Welcome to all new ClusterHeads!

Words of advice borrowed from CJohnson (Curtis), another poster:

1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.

One way to help others (as well of yourself) in the words of yet another poster, Elaine:

I am fighting the only way I know how. I back O.U.C.H. anyway I can. Through O.U.C.H. the word WILL get out that Clusters are more than a headache. More research WILL BE done.  More doctors and hospitals WILL know our needs. Insurance companies WILL know our needs. Along the way someone just may trip and fall over the cure!

There is a link to O.U.C.H. in yellow over to the left.

I shall bump this one, cause it is good......

And say hi to everyone while I am at it!!!!


Big Hugs....Little Deb ;;D

If I grind this to the top...

does it mean I can say me and deb are doin the bump and grind?

oh nevermind

bump

WELCOME TO ALL THAT FOUND THIS SITE. YOU ARE NOT ALONE ANYMORE WHILE YOUR HERE.

SENDING PF VIBES TO ALL.

Bump to THB's post. Check for Meet & Greet events. It's a wonderful thing to talk to fellow Clusterheads if you get the chance.

To all newcomers, WELCOME ABOARD!

A few thing I would like to tell all of you.  First and foremost, you need to read this link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
That link tells the history of this site, and about our illustrious DJ.  There is not a finer person on this earth!

Second, get to know the people here.  There are some wonderful people here.  One of the ways to get to know us better, is to go to the chat room that a sister site runs.  To get there, go here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  There is normally someone there after 10 pm east coast time.  If no one is there, log on, and wait.  Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.

Get to know people, as you will form close ties with people that should last to the rest of your life.  Exchange phone numbers.  Talk on line, and talk on the phone to them.  These people can be an unbreakable life line for you, and you can be for them.

Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever.  We are here to help you in any way that we can.  The one thing that we ask of you, is to give your support to others, also.  We are sufferers, and we are supporters.  As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.  

If you ever get a chance to meet another clusterhead or supporter, do so!  There is no better time than meeting them in person!  The bond is instantaneous!  And do not let the fact that you are in cycle stop you.  I have been to two of them, so far, and at both of them, I was getting hit.  All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group.  Everyone knew what was happening, yet no one freeked out over it.  They were there if I needed them, but knew enough not to force themselves on me.  You could see the love and vibes in the eyes of each and everyone of them.  This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache!  Deal with it!  Take a couple aspirins, and you will be fine."

Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here.  Many of us say, that if it was not for this site, I would be pushing up daiseys.  That is not just a phrase, it is the God's honest truth.  When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation!  Also, thank DJ directly.  He doesn't post much anymore, but he DOES read all posts.

Thank you DJ!

We are a family.  Welcome to the family, and welcome to my heart.

Chuck

Modified to update to new chat room

Well said Chuck.

Man there's a lot of new people lately!?

Steve G

Welcome home new people [smiley=hiya.gif]
Read all you can find and tell us a little about yourselves. There's a lot of good info and good people here so stick around.


stevegeebe wrote on Feb 11^th, 2004 at 8:02pm:

Man there's a lot of new people lately!? Steve G

There sure is Steve.
I wonder if there are times of the year when we see more newbies than at other times. I'm thinking Spring and Fall.

Jim

Must have been a cloudy day for Punxsutawney Clusterhead.

We're in for an early spring.

Oh boy!

Steve G

Saddled back up;
on the ship again,
no bailing
on this ship
The titanic was lost, but we got a good crew...
keepin in check, had one sent
the vents been cleared, you are all so dear
row row, toot toot.

thank you...Mr.YL

WOOT Thomas you have been stickied!!!!!!!!!!!!

xorn wrote on Mar 26^th, 2004 at 8:56pm:

mud(don't ask).

ok sorry I have to ask what is mud?  ;;D

MUD means Multi User Dimension.
It is a three dimensional world but it is all in text.
Most have fantasy themes.

So it is basically Dungeons and Dragons online.
And I've played for many years.

Thanx Chuck!

I am honoured and will happily claim my space in your heart. Preverably deep in2 1 of the corners 2 ensure U do not lose me.

tlc2U and everybody U luv

Hi!

I guess I'm the newest member.  This is the greatest website I've ever seen.  When I first started getting clusters I was 19.  There were no computers or web for that matter, it was 20 years ago.

I'm a dentist, and it took until I was in dental school to get a correct diagnosis.  We had a chronic pain instructer who was shocked that I was a young female with clusters! I'm so special!!

So here I am now, age 38. I have 4 kids, have never had a cluster during pregnancy (no, that's not why I have 4 kids!! LOL) My youngest is 3 now.  I would get a cluster after each delivery and this time I've gone over 3 years without any!  I prayed to God they were over in my life until March 9th at 2am they hit again!

I'm 20 days into it now and I think it's slowing down.  I was waking up every 30 min to suck O2.  Last night I only woke up twice! I try to avoid meds but  I'm dependent on Oxygen.

O2 works well in the beginning of the cluster, and in the last weeks.  NOTHING works in the middle days or weeks.  In the past I've used an Ergotamine inhaler.  That's like snorting alcohol (which of course, I'd do if it worked).  I tried the Imitex inhaler this time which just made me sick!!  So instead, I screamed, paced, cried, rocked like a crazy person and when it seemed to be coming down, I prayed the O2 would work next time!

This is like living in Hell!!

Hi my name is Scott and I sometimes feel like a new member, although I really first visited this site when I was diagnosed in the summer of 1999. The summer of complete utter Hell.

This site was of utmost importance than and still. I have not been proud of some of my postings lately, but I am past that.

I have spent more time reading lately, rather than posting, but feel it's ok to post now  :D

I also would like to know who DJ is, and if he/she is the creator of this website? If so, thanks. This site was my portal (especially in '99) into the world of CHs, and what they were, how they were treated, and of course the message boards where you realize other people have the same exact oddball condition.

Thanks to the creator of this website, whoever you are.

                         -Freddy (Scott)

Yes. DJ is the almighty creator. HE has posted in your other thread... Go say hi.

Hello Everyone, I am brand new to this site! I just stumbled onto it! My husband has had CH's for 20 of our 26 years of marriage. We have raised 2 kids. The youngest being 16. Both kids have always been so terrified during one of their Dads CH. My husband like all of you that I read about have tried many, many drugs. None of which didnt work, till about 7 years ago and we found a Dr. about 5 hours from our home and he put him on a drug called [sansert]. Maybe someone has heard of this, if so let me know. He only takes it during a cycle, it has been 2 weeks now and they seem to be getting better. Not as severe, but as often 1 to 2 a day. I know I myself do not have the Ch's but wish it was me instead of him. It is so hard to watch cannot imagine being the one in the horrible pain. Please if any one has any new things to offer or just a word of encouragement let me know. Desperate in a small town!!!

Hi bubbarube and welcome. Sorry you had a need to find this site, but glad you did. Like many of us, you "stumbled" onto it not realizing it has been around for awhile.

There is a supporters corner here you might check out. After 20 years, I would think you would be pretty good at support.

I have no experience with sansert, but it sounds like a preventative. Your husband should also seek out a good abortive. If you've done a little reading around here, especially in the "getting to know you" board you've seen a lot of references to Oxygen. You didn't mention whether this was something your husband had tried or not. It's not necessarily a new thing to offer, but it is something that seems to get overlooked, or used incorrectly. In my case, I had been using it incorrectly until I found this site. There is an oxygen info button to your left. Definitely check this out. Breathing high flow rate o2 with a non-rebreather mask at the onset of a cluster attack is very effective at aborting the attack for many of us. If it's not something your husband is currently doing, do it! It certainly can't hurt. I know in my case I was only getting some relief with o2 until I started using it correctly. I couldn't believe the difference.

There are many other ideas/strategy's available here. With the help of a good doctor, I'm confident you can find something here that works for your husband. Grab all the info you can here and share it with your doctor. No one thing seems to exist that works for everyone, which is one of the things that makes it so frustrating to treat.

If you can get him to, have your husband read up on this site. I'm willing to bet he will be absolutely amazed at what he reads and will several times utter the phrase, "my god, that's me!"

Good luck to you folks, after 20 years of battle I'm sure you have some interesting war stories. Don't hesitate to post them. Even the bad ones.

Glen

Fzfan, Thanks for the response. Not sure if Im doing this right or not? Yes, we have many HORROR stories! Yes my husband has tried o2. But I wiil check out the o2 info, as he may have been doing it wrong! He has been on so many drugs, as a matter of fact the Dr. we had before the one we have now he had him on so many drugs at the same time, when we switched DR.'s we took the bag of drugs with us and I remember taking them out of the bag and Dr. asking ok which ones are you currently taking and when my husband told him all of them, he said {MY GOD MAN WHATS HE TRYING TO DO KILL YA!} I will try to find the supporters corner you referred to as I would like to help anyone that I can and have the mutual support myself, as it is so hard to watch the one you love. more than life itself in such horrible pain. It is so nice to have some one that knows what your talking about! So glad I found this very informative and friendly site. We personally dont know any one that suffers with the beast! All our friends and family try to understand but they have no clue. I almost get mad when people say yes I know what hes going through as I have severe sinus headaches, or its just a headache whats the problem? You have to witness one or worse yet suffer through one. Again THANKS for all the info! Going to check out oxygen info hope to learn something!

Hey.  Myt name is Holden and I liev in Maine.  Way up in Caribou.  I am 28 years old.  I have had clusters fore a long time I think.  But I want to help.  what can I do to help out?  Do I need to give any moiney?  I do not have much money.

Visit the OUCH site if you haven't already.  Lots of fundraisers going on....check around.

Welcome to all of the new people!  So great to have you here.

Big hugs...Little Deb

my name is eddie im new but i will figure this message
board out one way are another i cant believe after 19
yrs i figured out what has been killing me CH but next
week i go to the neruo i went to the er the other night
i have been chronic for a long time just getting info what
was wrong so i went to the er they gave me some shots
of somthing did ct scan ask me  how i felt i told them it
was ch they gave me some o2 20 min later i started to
smile for a change that seem to make me feel better
but 3 days now its coming back hard i do feel bad now
so i cant wait to get to the doc next week o2 i believe
it helped alot i cant take to much more of CH i want the
doc to understand how bad it hurts 18 to 20 yrs
of this is enough! hope he will give me imitrex&o2
but keep in mind they had to look that info up but
i tried to be as nice as i could and that has been
hard for me lately see im irish and here lately it
seemed like i hated everybody but i dont i really
love life so thanks to this site & a sweet lady &
few people emailed me i got on the road to some
relief so THANKS ET

Welcome Eddie!!


Little Deb

Welcome to the board Eddie, the O2 works for lots of people here ... so keep on your doc and make him give you a script for it.  It's easy to use, check out the button on the left for all the info you need to use O2 properly for CH.  

Wishing you pain free times.

Excellent Welcome post!

I hope everyone new to clusterville reads all the replies.  The advice and support are great - as usual.  

If anyone needs a clusterbud, just email or send me an IM.  I've been gone so long, it's the least I can do.

It feels sooooo good to be back!

Kate

hey peeps**thumbs up to ye all**

this is my first message on this here n actually my first message on a message board so if i screw up, i apologise.

any how little bout me, am ginger:D, 17, from glasgow scotland n am god damn sexi:P. i was diagnosed with clusters when a was 15 and at the time it was just b4 my 4year prelims exams. due to tthe clusters a missed bout a month of school, which for any rock star in the making would find cool but.........alas**ye luving it yet, thats a gr8 word:P**eh....where was i, oh yeah....alas....there was one minor:P problem, i got these headaches which were just wow. i say wow coz a had never experienced nethin like them. hehe a joked with ma self sayin at any moment an alien would burst through ma head:P. so anyway went to the doctors and at first he put me on betablockers, hehe which didnt work then bout 2 weeks later he put me on to injections which did kinda make me nervous :-X. Bur anyhow they worked.

this is a thanks from the cav-cav for the peeps who created the site, awesome

cav-cav\m/

Hi everyone!  My husband currently is suffering from CH and I was on the supporters site and it was suggested that I come onto this site and introduce myself.  

I guess that my husband has been suffering from CH for well over a year.  He suddenly started having bad headaches and an MRI was done that showed a Pit Tumor.  They took that out and thought that everything would be fine.  Well after 4 neurologists he finally found a neuro that classified his headaches as CH, however he is not really famaliar with them so he is "doing it by the book".  He started that Vapermil (I think that is how you spell it and they got slighly better) also gave him o2 and that seemed to work.  Then the headaches came back and they upped the Vapermil.  That worked for a while and then stopped.  Started him on Prednisone and that did not work and so then they started him on lithium.  It has only been a few days so I am not sure if that will work.

I can say one thing as being a supporter it is hard to keep the faith.  As each day goes by I seem to be losing hope which is not good for him or our family.

Anyway I am new to the site and I know that he looks at the site but I do not think he posts.  

We live in Illinois and am soo glad that we discovered this site.

Hope to talk to you all soon as the agression needs to get out somehow.

im glad i found this site and no now that i am not alone pfd's are not impossible never give up hope :-*

Hi all,
Thank you so very much for all the responses; advice support, etc.
Knowing people are out there can put your mind at ease when you feel helpless.

Forever greatful,
Eric

Thanks, for all the welcomes! It is good to be back with you guys after so many years of reading the board but not saying anything! (Please forgive).
The reason I have decided to get involved is I want to be able to ask questions and of course get responses that are directed to me. We all have our little box's we live in. They may look like one another but each of us has something special to offer!
Anyhow thanks for allowing me back!
callie bro. :D :D

Haven't been back in a few years cause I been in remission.  Have had a few mild attacks the last few nights and have taken to the shower. Discoverd the shower treatment a few years back, during another episode period and it works well for me while    in "season" so to speak.  I am hoping this season the attacks stay mild.  
By mild, I mean, not vomiting this time.  I've had them off and on for over 20 years. My remissions can last 2-3 years, and my season, as I call it, runs aanywhere from 30-60 days. And the last  season -- ands so far, this one -- they don't seem to greatly intensify -- or maybe the water stimulation is just distracting me. Light sensitivity and sinus are still present, so I take the shower in the dark.
Glad you guys are here. I've notice that when they wake me up, they're not quite as intense, and if I stumble to the shower, and get going, I'm okay.

Does the shower treatment work for anyone else?
I just stand there, or sit, sometimes, and just keep warm water hitting the same side of  my head. more or less. I have to be careful though, cause I want to fall asleep.
Takes about 15-20 minutes and then I seem to be okay.
Exhausted, but okay. I've always thought that was weird, too, getting out of a shower, more tired than when you got in.

Only with clusters...

Hello everyone, I'm new to this site, and so thankful that I"m not crazy, and not alone!  I'm definately looking forward to meeting fellow clusterheads.  Thank you for being here.

Lisa  :)

You'll find tons of amazing info and tremendous support!!
Unfortunately ;).......Welcome aboard!

Eric

psycofemale0403 wrote on Jun 23^rd, 2004 at 7:24pm:

Hello everyone, I'm new to this site, and so thankful that I"m not crazy, and not alone!  I'm definately looking forward to meeting fellow clusterheads.  Thank you for being here. Lisa  :)

Just a BUMP!  

Welcome to everyone!  We are glad you found us.
Keep reading, and stick around.  Someone is always here 24/7.  You will never be alone in pain again.


Big Hugs...............Little Deb

Hey everybody... Not new to the site ,but never posted a message before. Been a cluster headache sufferer for thirteen years now, and after no headaches for a year and a half , their back.
Just so nice to be able to read others messages... know that I'm not alone. I'm feeling a little shell shocked right now after just getting through a bought so I'll sign off.
Karen

Hi, I'm new here, but not new to the clusters, been having them for over thirty years...man, a nurse told me about this site two weeks ago...very glad to know i'm not alone with this. I won't go into detail, but there has been many i've done to find relief thru the years, until a nero.doc at the v.a. figured it out about eight years ago.thanks

Hi, my name is Carla and my boyfriend of 3 years suffers from this horrible monster they call " headaches". The first year together was weird since I thought he was losing his mind when he would rock back and forth and cry like a baby. A dr. at the er told him to use claritan d. That seemed to help him for about a year and a half. About a month ago the demon came back full force to claim his sanity once again. I came across this site, thank god. We took the advice of using melatonin 3mg. Rick has had a decent night sleep so far, only on the 3rd day of trying this. I am new to this site and I am getting familiar with everything. Thanks for the insight and info. I will be visiting this site often for support if nothing else.
 
                  Thanks again for insight into a terrible hell,

                                      Carla

When I read the last posts, I realized that no one has said WELCOME on this thread lately...So consider it said...it gives a wonderful cross of new people and regular sufferers and supporters...OUCH is the organization formed to promote our cause by bringing attention to us to the medical field and research...they are doing well, money is always welcome, but joining with your support helps, spreading the word by educating your medical support, friends, and family, as well as supporting others by sharing, questions, and venting here...best thanks we can give DJ for all his talent and generosity... 143

OK,
Where to start!
Ah! at the beginning.  :)
April 1982, like a fairy tale, a long long time ago! Wierd headaches started, ate me alive. I spent 15 years taking toxic junk that didn't help. Only relief (and that may have been in my mind was Midrin {anybody remember that}) For that 15 years I had an average of 3 to 4 outbreaks a year, average time 1 to 3 months, on occasion up to 6 month at a time. Didn't find a good doctor until late 90's, he put me on verapamil and 02. Worked wonders. Have had a few major outbreaks since then, still run 3 or 4 months. Mostly just an occasionl breakthrough and lots of shadows. Keep the 02 handy and never miss the verapamil. Still live in fear, still do 02, always waiting for the next BIG ONE! Helluva way to live! Think I may have to put my wife up for saint hood ! Thats it in a nut shell.
Been There- Done That

Welcome, just sorry you need to be here...How much is your Verap dosage...since that is a key...and how do you take the O2? Hope you have read all the links to the left..Stop back in anytime...Oh, and I second that nomination for Sainthood for your wife...invite her to check out the Supporters Corner...Supporters are always welcome...PPP
143

This is my first posting. I did find your site in April, a mother of one of my students gave me the address.
I cried and laughed when I reads the words of fellow sufferers. Finally someone explained the same pain I have.
I went to a new neuro  in April, after 2 trips in the ambulance to hospital.  He said Cluster Headaches and gave me Imitrex injections and a prescription for O2.

The attacks were less and July16 was the last one.
I now believe that the 4 episodes in the last 17 years were all Clusters and not optic neuritis or severe sinus infection.

My daily meds are Verapamil 2x day; Daypro 2x day; o2 as needed, Imitrex nasal spray and injections.

I had lots of support from my family during the last episode from  JANUARY 6TH TO JULY 16TH.  But they do not understand the pain and panic that comes with a cluster attack.
Thank you for having this site. I hope I can give words of support to someone.
pj

Welcome pj,

So sorry that you have to be here, but this is a wonderful place with some fantastic people.  You'll learn quite a bit here (I sure did).

Best Wishes

John

Hello all,
sorry it took so long to get back. long days at work, etc.
Judy, i ony take 360 mg of verap a day. Just got off the 02 bottle, one of the wild stress/tired related ones tried.
As to being sorry for me having to be here, nope! Shuda been here long ago, 22 years alone is enuff! Thanks all, tis good to know i ain't alone! especially when i have these idjits that come up and say "i have clusters" yeah, if frogs had wings they wudn't bump their a** when they hopped to! But good to be among people that understand! Thanks,
work runs a bit strange so i  will disappear sometimes, but will check back as i can. Best to all.

Hi, am new to the board!  Have had CH's for approx 6 years.  This board, and website are woderful.  Am currently about 4 wks into a cycle.  Just started Zomig NS 5mg.  Hoping for the best.  Look forward to getting to know some of you.
Thanks
Andy
Chaska, Mn

Count me in.. I'm trying EVERYTHING... Since it's hard to find a doctor that will give you anything besides narcotics... Currently using acupuncture, vitamin injections, Excedrin Migrain (Has caffine in it) and experimenting with many others. Has anyone tried nitrous oxide w/or w/o O2 treatments? Ordered some White Powder Gold too, will let you know how it works!

This is such a great thread!  Just have to BUMP it again!

Welcome to ALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


Little Deb

I just found this site today.  I have had migraine headaches since I was a teenager.  I am now 44 years old.  Migraines run in the family and I have also passed them on to my children.  When I was younger I usually only had them around the time of my menstrual cycle then in 1995 I had a hysterectomy, they left one ovary.  Almost from the very day of the surgery I began having daily "migraines".  I would take my medication and I'd have relief for awhile and as soon as the meds wore off, the headache would be right back.  I spent a lot of time in the ER, doctors' offices, having tests and a lot of time and money at the pharmacy.  Not too long ago I had a doctor tell me that it is not possible to have a migraine every day.  I was really angry because it was like he was telling me that it was all in my head (no pun intended).  I finally went to a new doctor and he was asking me about my headaches and he said that it sounds like I have combination migraine/cluster headaches.  Does anyone else out there have the same thing?  Also, does anyone have blepharospasms (eyelid twitching)?  It drives me insane.  
 As far as pain relief goes, I got most of my relief from Stadol Nasal Spray.  Can't get it anymore, so I just have to suffer through.  I'd rather be addicted to it and live a fairly normal life than to miss out on all of the things that I've had to miss over the years.  That's not even close to being a normal life.  You can't plan anything because you have to say "Well, I have to wait and see how I feel that day".  And people act as if it is a crutch.  When my husband and I first got married he'd say, "Oh, you have a headache every day" or You never feel good", by the way, I have fibromyalgia too.  The fibro is better, becoming more active really does help with that.  
Jenny

wrote on Sep 1^st, 2004 at 3:07pm:

Also, does anyone have blepharospasms (eyelid twitching)?  It drives me insane.

All the time.  Yes it is annoying.

Hi, I,m new also. Age 60. Clusters started 10 years ago.
I treated them as sinus headaches until last year when
I couldn't handle it any more on a 4 month cycle and broke down and went to the Dr. He gave me triptans and they worked. I was ok until this spring and the cycle started, at the end of the 3rd month Dr. was concern about over use of triptans--so we tried innopranxl (beta bloker)--didn't work. Now I'm on my third week of Topamax which seems to work have had a couple break thrus and many wierd side effects. I know I am lucky to be getting relief but I am very anxious and concerned about long term damage from meds. I don't feel like myself---and feel housebound and antisocial--don't mean to whine--but would like to hear other opinions from Topamax users/ I'm on 100 mg.
Trying to keep this short---happy to find a place to find someunderstanding and it's not really all about me.

Welcome Sophie,

Sorry you have to be here.  You will find a lot of support though.  As for the Topamax, I don't use it so in don't really know.  You might want to use the search function to find out about this drug (the search doesn't always work for me), or post a question about it over on the medications board (in fact, I just looked and there is a thread that was started 9 September that is titled Topamax).  I hope this is helpful, and poke around the site a little, or a lot.  There is tons of great info, and a whole bunch of really great people.  PM me if you have any questions.

Casey

This is my second round with cluster headaches. The first time I went off work on disability, this time I have an 18 month old and I have recently started a new job. How do you manage?

Hello Kellie,

I'm glad you found the board- welcome- sorry you have to be here though.

There is some great info here- read all you can and try to be proactive about your condition- but there's also tons of support. Talking to people that understand your pain can offer some great relief and it's also a way some of us manage. It is also of great importance that you find a doctor that knows how to treat clusters and build with his help a defense line against these things.

I would suggest that you start a new thread where you could share some more information about yourself ( like how long you've been in this cycle, what medication have you tried, if something had worked in the past etc) so that you'll get more responses from more experienced sufferers than myself.

Again welcome to the board,
Perry.

Hi everyone,
I was happy to read your comments on this post, Im new as of today 9/26,0n my first post I was attacked verbally by member "Johnny" and then he was defended by others for his rude and bigot comments that came from no where other than his own sexual insecurities I have to assume
since it was my very first post I felt this is def not the site for me... I was under the impression it is was a friendly site and I found myself in defense on the first sentence I posted..
Sad that a few can change the impression for many others..
an apology would have been just fine, but I have to judge only by his comments, I would think that the moderator wouldnt allow that behavior....

Bodge wrote on Sep 26^th, 2004 at 1:39pm:

an apology would have been just fine, but I have to judge only by his comments, I would think that the moderator wouldnt allow that behavior....

If you look at your thread you will see there is an apology, savior in it cause it dont happen often my friend ;;D

.....................................jonny

im sorry i guess i posted my message in the wrong place  but this site seems like it will be helpfull  right now im just very unsure of everything and i am scared its a horrible think to watch your loved one go thru

Getting to know the site and marvel at all the support and information. It's truly amazing and of considerable help. Have a friend who lost his left arm in VN and has suffered with what sounds like CH for the last 32years.
Never really understood until now.  I see my MD again
this Friday morning loaded with knowledge gleened from this site. Thank you, Thank you, Thank you.

Phil

Seems I have found the site on the same day as a load of others. I have been up for hours (dreading going to sleep) and have just been rummaging about the site.
It is fantastic but really wierd to think that I am so happy to found loads of people who have the same pain experience as I have. It does feel like Aussie Brian said to me, welcome home, but I am seriously concerned about my work as I may end up spending too much time on this site!!!! Love to you all. jack.

TO "WELCOME," the woman who is trying to help her husband and asked about Sansert.

I took it for a while, and indeed it aborted the cluster attacks.  However, for me the side effects were too much to  keep on with it.  However, of course, everyone is different, and your husband may tolerate it well.

He should know, however, that periodic blood work is necessary when taking Sansert, because it can cause fibrosis of various organs.  The drug is a (very) close relative of LSD.

Sorry you and he have to be here, but welcome anyway, and many wishes for the pain to end.

Writer.  

I'm new to message boards, so I hope I'm doing this correctly.

I'm just glad to find a site where people understand what I've been going through for way too many years!

Hello...Finally! After reading some of these letters from the home page, I have have found home. My name is Toby. I'm from Hickory, NC. I'm going on my 5th week of attacks. I'm exhausted.

Welcome Toby- sorry you're here. Look around the site and post questions...there's lots of folks to support you here. Pain free wishes...

I've been a member since 2002.never relied much on this forum,even though I watch it intensly.But now I need help.I've been released from my position at my job for filing disality due to ch.I've been offered to stay with my company with a 2/3rd cut in pay.They didn't outright say it was because of my ch's but due to "lost time & lack of performance"Come on lets get real.I need legal advice.Is there any lawyers that you know of who can help me? I'm still under disability.But financiley I can't hang on much longer.Any help would be appreciated.
Thanks.
I wish I could find spell check on this message board.
Happy Holidays

Hi All,

I'm new to the site , and I'm in.


As for the time of year. yes I saw  my second nuero on the winter solstace. Based on my experience and readings. there is a problem with my clock....The good news is eventualy it will get reset.I would be interested in seeing the list of non cronics as a % by latitude...

Anyway..Hi All.

Welcome, bang your head, and I'm sorry you're here. I'm glad you found us. We're a nutty bunch that really understands your pain.  :)

Hey rob,
Maybe you can get some help from one of these sites and archives.

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           SS disability benefits site.

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                  Carl D (2-2-01, advice on disability benefits

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  Trip 6-30-01 document on current disability laws (from Migraine Awarness Network)

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                 Bob Johnson 9-4-01 ADA: job interviews and chronic illness. Your rights....

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              discussion string about disability and using a lawyer





rob wrote on Dec 8^th, 2004 at 12:10am:

I wish I could find spell check on this message board. Happy Holidays

LOL. We all do, rob.     (Wish we could find Spell Check, not that we wish you could find it)

Hey, WOW...glad to have found this site so far. I am a female CH sufferer...have been for about 25yrs. I had been CH free for 3 years until just a  few weeks ago....just on time for christmas!!! I thought I was over this hell. Has anyone else had long absences only for the monster to return? I am sooo depressed! Is there a chat group on this site?? I really need someone to chat with..........

thanks!!

Cece

Welcome Cece, sorry you're here. When I was episodic (oh how I miss those days) I often had very long remissions. It's terrible when you think you are finally rid of it and it returns. Look at the links to your left. On the headache links there is a mention of Elaine's support group for all types of headaches. Go there in the evening (usually after 7pm Eastern time or later) and there are usually a few clusterheads there. Use the message boards here to read and get info and also to ask questions. This is an awesome bunch of folks who are sincerely interested in helping other clusterheads. Pain free wishes to you.

Hi Everyone,

My name is Steve and my wife is Doreen.  My wife is the one with the curse of head pain.

My wife has had head pain since August this year.  Originally the pain started on her right side (she describes it as pain deep within her ear).  At first it came in the afternoon and got to lets say a 5.  We went to an oral surgeon specializing in head pain.  He gave her shots of Lidocain all the way in the back of her mouth which gave her temporary relief for a few hours.
It increased in its intensity and I admitted her to the hospital.  None of the pain meds that they gave her worked, morphine.  The only thing that at that time brought any relief was a shot by a dental resident in the mouth.  They released her after three days and after taking MRI's catscans, X-Rays etc. of the head and brain.  Everything showed negative.  
A week later we were back at the hospital.  Same result and this is now the 1st week in October and NO ONE has diagnosed what this damn pain is.  We went to ENT's, a  Pain Center  who prescribed fentanyl pops and duragesic patches etc. and neurologists one of which recommended a nurosurgeon in NY who specializes in head pain and is supposidly well known (Lawrence C. Newman M.D. ,St. Luke's-Roosevelt Hospital.  We saw him on 12/20/04 and within 15 to 30 minutes he said she had Cluster Headache. He prescribed a medicine Indocin which ripped up her stomach and made the pain worse and she vomitted for 36 hours ending up with Gastritis and in the hospital that night.  We called back and he then said she had to take it and to take sucralfate to keep it down.  That worked to keep it down but the pain within 35 mins got worse.  The latest script was for Verapamil -120mg.  Well this was taken this past Tuesday and 4 hrs later her head pain exploded to a level which left her screaming.
If this is Cluster it has to be a mutant form of it or something else or both.  I think from what I have read the next form of treatment should be the Oxygen.  I did get a prescrition for Imitrex spay but I'm hearing that it should be monitored while taking it....I don't know anymore.  Help us with any thoughts you may have if you can guys!!!
Thanks in advance for any help you can give.

Steve  (Sorry to be so longwinded)

Welcome, Steve and so sorry you had to find us. The Indocin will not likely help CH, but it can be used to rule out Chronic Paroxysmal Hemicrania, which presents like CH. Oxygen is probably her best bet. The verapamil dose is kind of low, talk to her doc about increasing it and maybe adding lithium. Verap and lithium together have helped many of us. They both take awhile to get to the proper levels in our systems. If your wife does not have heart problems, I would get the Imitrex filled and she can use it to abort the really bad headaches while she waits for the verap combo to kick in. She needs to take it the moment she feels a bad one coming on. I find a cold pack helps me, too. Oxygen has to be 100% and breathed through a non-rebreather mask. Call her dr and ask for a prescription for it. Look around the boards here and look at the OUCH site (link at left) Feel free to ask us any other questions you may have. Have her come here too. This is an awesome bunch who will offer her much support. Good luck and pain free wishes to her.

Hello everyone this is my first time on this site and I am and happy that i found people that crawl on the floor and yell Like i do (a way to go!) On a more serious note I just came back from seeing my neurologist and he prescribed predisone, have that worked for anyone, i know i haven't had a bad one since i took them, maybe they do work, I not going to jump up and down yet, then i might be dissappointed. I need some feed back and for each one of you that are a clustie- God got your back. Keep prayer. write me someone!

Myke Myke -Philadelphia

Hi Myke,

Welcome, but so sorry you had to find us.

Prednisone can be a true miracle-worker, especially for those of us who are episodic sufferers.  Generally though, it only knocks out the HA's for a short while.  It's usually prescribed along with a preventative med like Verapamil (in fairly high doses).  By the time you're weaning off the Prednisone, the prevent is kicking in - that's the theory anyway.  It works for me, but I still have the fairly regular head-banger that requires Imitrex injections (a true miracle).

Take a look at this link.  It was a God send to me and my doc.  Best wishes and keep posting!

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Kris

Hi everybody!

Been checking out the site since last week - learned so much about my 'problem' - signed the guestbook- was surprised and moved when one of you wrote to me.
Today, I finally cruised this message board and learned so much about you!!
Although I don't feel very social right now - 'strong threatening shadows' when I thought it was over -  it's a relief to know that you great people are here!
I sure hope I can make somebody else feel this way someday.

Kitlulu (Kathy)

Welcome, Kathy. I'm glad you found us, sorry you had to. Stick around, learn a lot, ask questions...join in when you feel up to it...pain free wishes to you.  nani

Hi, i'm 39 and female from WV and new here, my CH's just started this past week. ( I think they are CH's) At first, it really freaked me out, after the 3rd CH hit, I thought i was having an aneurysm, after extensive research, i'm hoping it is CH.  I've had five espisodes in the last two days, and dreading the next one.  I tried to explain to my husband what the pain was like, but i couldn't put it into words.  Just that it hits out of nowhere.  My "episodes" only last 10 to 25 minutes, always over my right eye.  I'm nausous and I can actually feel it throbbing if i place my hand over the area.  Does this sound like CH?

Hi there - sorry you have to be here but you will at least get some helpful information.  Check out all the links to the left, please be sure to do the cluster quiz - that will help you to determine whether this is CH or not.  There's a lot of information there - print out what you think is pertinent and perhaps go over it with your physician.

I always hesitate to tell people what I think they have - I'd rather know you've sought medical attention.

Hope your find some answers soon.

Carol

;) hi, havent a clue what Im doing never been on anything like this before. Its now time I stop crying and get to know other people who are putting up with same things, and have a laugh along the way.  

Welcome, NZ...and sorry you had to find us. Now that you've found us, look around the site and the boards here. You'll find lots of info and understanding. Pain free wishes to you...nani

Just wanted to give this message a good healthy BUMP and welcome the newcomers.

Use the links, print out the various pieces of information, educate your physician if you have to, and most of all, know that you don't have to suffer this agony alone anymore.

Welcome. Although I'm sorry that ANY of us have reason to be here, I'm glad that you've found the single most informative place in the world on this hell known as cluster headaches.

My best to you, and wishes for days full of life and laughter, and nights of serene, peaceful rest.

-Frank

I am new to the board but a long time CH sufferer.  I have not had a bad cycle for at least 4 years, but they seem to be back.  Have there been any new medications on the market lately?  I am using imitrex spray 5mg because thats what we have for my wife' migraines.  I used to take the cafrigot supps as a profalaxis.
Kalach

Hi Kalach...welcome. You have found the place with a lot of info on meds and treatments. Look around the boards here and gather as much info as you can. Oxygen (see oxygen info link at left) is a very effective abortive treatment for many of us. There are preventative meds we use as well. Print out any info you find helpful and take it to your next dr visit. Pain free wishes, nani

Some Msg boards have a way of "pinning" the thread.  This way it always stays on the top.  This seems like a thread that should always be up there.


Garrett

Has anyone tried Botox injections for relief of CH.  My wife had relief from Migraines.
Kalach

There is a thread on this subject on the Medications board. Along with a lot of other treatment info. PF wishes, nani

Looks like last post was ten days ago....Well, I'm new here, have been in remission for almost five years and last week the shadows began showing up.  I've had cluster since the age of 20 and am now 57.  In the mid-seventies I wanted to set up a support group in New York but none of the neurologists I talked with would ever identify to me, or share the identity of, or even act as a middleman for, any of their other patients who had cluster, in an effort to get us communicating.  There was no way to connect with anyone who had this condition.  I am glad to see that the internet and some perservering individuals have finally made this a reality, it has been needed for so long.  The misunderstanding from non-sufferers that goes with cluster is perhaps second only to the mindless pain generation in its demoralizing effect upon the sufferer.  I don't take any medications.  I use ice packs and pacing during the strongest attacks.  I used to include coffee but I stopped caffeine years ago for other reasons.  I know this regimen sounds impossible but it has worked for me for many years in shortening the duration of each attack.  Once had a Johns Hopkins man tell me the headaches wouldnt kill me but the medications would.  I've seen literally dozens of neurologists over the years but I could not overcome my revulsion to drugs to try any of the therapies they offered.  However this past week I have been saddened to see that most medical discussions on the internet are still citing the same medications which were being used ten and fifteen years ago.  There really is a lack of awareness and funding regarding this terrible affliction.  Guess it just isn't widespread enough or glamorous enough or politically useful enough for big bucks to get behind it.  I still get the "deal with it" spiel from my wife of 20 years, who herself is a diabetic.  Ironically, I have attended many seminars on her illness so that I would be more in tune with her needs and what was going on with her illness, and have noted how much improved she is mentally about it because she gets so much support and acknowledgment from her doctor and all who are around her.  Diabetes gets so much publicity, imagine what that kind of clout would do for cluster?  I think the word among specialists is that there will be a cure for diabetes in a few years.  Fantastic what sustained effort and funding can do.  Not trying to feel sorry for myself---but in my fifty-seven years I have never met a single soul, male or female, who suffered from cluster.  So forgive me if I am initially skeptical about this website.... Hope to hear from some of you soon....

Hello cairn terrier!
Nice to meet you but I'm sorry you have to be here.
Have you considered trying O2? Thats not a drug but for me it is literally a life saver.  I couldn't believe the difference it made for me.
You are right.. there is little or no info and most doctors seem to have never even heard of CH.. thats why this website IS such a help. I'm no longer alone.. I have others who understand EXACTLY what is going on and believe me.. it makes an incredible difference!
There are meet and greets organised through out the year (see the meetings board a bit further down the main "menu"!) and there is a big convention in Dallas in July. Hopefully its not going to be too long until you meet your first clusterhead!
Let us know how you are getting on.. Have a look at the Oxygen Info on the left.. you never know it could just be your "silver bullet"  :)

And you're not alone anymore
Helen

Thank you, Helen, for your welcome.  I hope it's okay to address you by name here.  It does make a difference to know you can talk to others who know firsthand what we go through.  For many years I kept daily diaries and full descriptions of every attack, in the hopes of determining some pattern at work.  While there were some patterns, they didn't add up to much.  

Actually I did try 02 for awhile.  While I was still living in New York.   Probably not for long enough though, because I did not notice any difference in the attacks before vs. after.  I am glad you found something that helps you.  And I too  am sorry to have to meet anyone under these kinds of circumstances.

It's interesting to note that New York and the state where I now reside (and have for 20 years) both have the highest number of CH members.  Now what does that mean??      

It means birds of a feather flock together!  [smiley=laugh.gif]

When you tried the O2 did you try it at around 12-15 LPM and use a non rebreather mask? I only ask because if you don't have the right set up its just not going to be as effective. When I first started with it I took a bit of getting used to it and then BINGO! perfect!

Oh and its fine to call me Helen.. call me anything you like except for shortarse.. I'm not too keen on that one! [smiley=laugh.gif]

i wish i could determine how to use this site.  i picked you because you were under "wellcome".  i have been jumping around the site and have picked up a few tips.  i have been a clusterhead since around 1997.  i have had four cycles of 4 to 6 weeks each, 2 to 6 clusters a day.  i consider myself lucky to be able to go 2 to 3 years with pain free.  i am also lucky that i get relief from oxygen.  i suffered through the first cycle without getting a dx from several doctors.  my optometrist saw the horner's syndrome and lead to the dx.  i learned of oxygen on the internet.  my aches last for one hour so   it is difficult to determine if oral medication help.  does this demon ever stop returning?!!

Hi Kralicke its nice to meet you although I'm sorry it is here.
I'm not going to say you are "lucky" to get short cycles or to have them well spaced.. pain is pain how ever and whenever you get it.
You have O2 which is good as thats my "drug" of choice, imitrex injections are fast working, usually about five-10 minutes but there is alot of thought that these prolong cycles. Have a look at the meds available. Have a look at the kudzu and psilcybin threads on the meds board, both have been of very great interest to me.
There is a great wealth of information here so grab what you need. Don't be afraid to ask further questions and let us know how you are getting on.
Wishing you success in finding what will work for you
PFDANS
Helen

so this is home.  so be it!!  i consider the rath of the Demon a curse,for myself!! a 15yr marraige GONE!! The ability to function without  retribution from a Demon ,bent on getting me to live only in my house. GONE!! Who`s only sole purpose is to make sure that He arrises everytime i find a new Female friend, only to chase her off. And who can blame her/them, No Women  will knowingly allow herself to be the rearguard or a bystander as She watches Me, Hop and Pop with the Demon himself.
Believe it or not I`m not angry, i just see it as a form of Anti-Terrorism, to take the Beast ON,HEAD ON. For he is the Terrorist and i am the Operator,  Never Quitting,Never letting him win,ever again.
I have my Gear, my Daily pills, my OxY, and my Thermo-Nuclear Device (Imitrix-injectable) and i have 8yrs Combat Experience.
My Deadliest Weapon , MY MIND and WILL !!
But most importently, I WILL NOT FAIL !!
I will bring Democracy back to my head, and The
Terrorist, WILL FALL !!

This is the needed attitude of the suffer. I spent 3yrs in my house never leaveing, NEVER AGAIN !! Yes things are rough most of the time,I`m diagnost  as a Chronic Suffer, and by the lack of releif  i`ve gott`n , i`d say the Nurologist got that one, Right ON.
But this is my attitude ,as taught to me by a Special Friend. I`ve Won the Battles and I will WIN the WAR !!

And i sincerely Hope anyone that reads this, See`s the Humor i`m using, but also GETS THE MESSAGE.

DO NOT QUIT !! It is a Terrorist,  and YOU will Prevail !

Hello all: I just joined  this web site and now I feel a little better  knowing that i am not the only person living with this, what do you guys call it." The Beast", well its back again and being a stay at homedad of two young girls 2 yrs and 9 mths, the lack of sleep is killing me, i hope i can bring this topic up to my Dr. He informend i have nasel  polyps and i thought  that was causing all this pain, but after reading all this info, i belive i fall in this catagory. I am happy this site is here and will be a regular visitor here. stya safe all, bye. [smiley=laugh.gif]

good day everyone I hope. I have just found this wonderful site. See I am a sufferer also. I am episodic and currently waiting for my little friend to arrive. It`s been a little over a year now. I know I should be grateful for this time off but I also know what is coming.I am truly grateful for finding you all here. I like to think I will never get them again but I know the truth,the beast will return. So to all of us suffering now I say a prayer and to all those waiting like me try not to dwell to much on the beast for he will return. Try to just live ONE DAY AT A TIME.                                                                      
                                               Iggy

Hello Iggy, nice to meet you, have a good look around, I'm usre you will find tons of stuff that will interest you and be of use to you!
What abortives and preventatives are you using (or rather do you use when you are in cycle?) If you haven't found them of much use so far then keep reading you WILL find something that will help you!
Tell us a bit more about yourself and ask any questions you need to
Welcome!
Helen

I feel I should say hi to the welcome wagon.
I asked a few questions about Prednisone and got lots of answers and advise, the best I found is:

1. Find a neurologist you can rely on.
2. Formulate and employ a preventive strategy.
3. Formulate and employ an abortive strategy.
4. Use what you have learned to help others.  

I would like to thank E-Double and Gator for their  links and comments, also the great DJ for creating this site.

I have a Dr. appointment this Monday and because of this site I'll be going with loads of information.

If your new to this site, in my opinion this is the best place to be if you suffer from CH, better than the Dr. office.

Great to be ruff'n it out with all of you. :)

Hello everyone! My name is Curt.  I am very new to this site and so far I like the info I read and know that I am not alone out there.  I've been suffering from CH since 1982 when I was stationed in Panama.  I was diognosed with CH in 1996 and through out that time I thought it was just me with severe sinus problems. I know the truth and it still hurts.  I have tried different treatments and the best for me are imitrex injections.   The headaches came back about a month ago with a vengence. It had been three years since my last demons and I felt very good about it. But now they are back. This site helps with my attitude about them. I feel it "Always" on my left side of my head. It normally happens at night especially when I am asleep, but lately it's been happenning during the day and affecting my job. The one word I can describe about the whole ordeal is fraustrated. For all the people who feel my pain, keep your chin up! :D

I'm another newbie to the group.
I was headache free all my life - until my 39th birthday and that night I woke up with a pain that felt like someone had driven a red-hot spike into my left temple - I'm now 61 and that spike has gone from red-hot to white-hot and the longest I've gone without suffering from a cluster has been 1 week.  I should say the longest I had ever gone before was 1 week - I've now gone almost 2 weeks without a cluster (a new record for me!!!!!)  I've been scanned, doplered, wired with monitors, injected, probed, tried every medication in the books, monitored my diet, even went for the golden-needles, and my check-book emptied by the medical profession all with negative results.

Most of the clusters hit during the night but that's not always the rule - they can hit at any time and without warning.  There ain't nothing like being in rush hour traffic and having the cluster suddenly hit - find the shoulder of the road, squeeze your head and wait.

Now for the real reason I'm posting - not to whine or repeat the symptoms that everyone is experiencing but to offer up what MIGHT be a preventative -  This is the longest i've gone in 22 years without a cluster and so I'm hopeful that I've found something that just might work - and that is folic acid.  A friend recommended it and I got a daily multi-vitamin that contains folic acid - I know, it sounds too simple - but so far, so good.

To everyone, I'd like to say thanks for being here - support  and knowing we're not alone is wonderful.

Adonaset

Adonaset

I'm glad you found us, and glad you have found something that works for you. I don't think it is any miraculous silver bullet though, I took folic acid before trying to get pregnant and it had no effect on my headaches at all (had a lovely healthy baby though! ;;D)

Wendy

another day without the cluster - so something is working.

no clusters and no pregancy so far lol  - thank you for the welcome.

adonaset

I'm new to the board been dealing with the beast since 1988 only thing that will stop the pain is narcotics. Of course they raise the slobber and drool factor also.  I've tried numerous scripts and O2 therapy nothing seems to work.  I'm fairly accomplished in the martial arts and the mind control/relaxation therapy seems to help some but it take total concentration and the headaches destroy that.  I had a series of MRI's EEG's and CT scans in 1988' that ruled out everything but Clusters and that's when the Neuroguy diagnosed them but lately the really severe ones have been accompanied by short periods of, not really unconsciousness, but just not totally with it, til the headache subsides and I'm back to normal and able to regain my feet and surroundings.  My wife has stolen and hidden my drivers license and I'm scheduled for another round of the same tests again next week I guess it's okay to be scared.   They hurt worse than being shot, and least you know somebody's trying to do that and you can shoot back.

Sorry you're having such a hard time orso. I'm surprised that narcotics stop the pain for you. Have you been diagnosed with CH? If so and you can't find relief with CH drugs, try this...

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Read through all the threads even though some are long. Many of us have found kudzu helpful. Pay special attention to possible drug interactions.
Good luck and pain free wishes to you, nani

Just found the site and what a relief it is.  I'm 34 and if you can believe it I've been getting CH's since I was 4 years old.  I just started another cycle and found out that they no longer make the medication that I had been taking for the past 10 years (Sansert).  I'm getting by with Imitrex and have a Dr appointment tomorrow to try to find a new preventative medication.  Just glad to know that there are other people out there that know what I'm going through.

Hello judgie!
If you get time before your dr's appt, read read read! There is so much stuff here you will be able to discuss with him to get whats right for you. In particular look at the O2 info and also the kudzu threads.
Let us know how you get on okay?!
Helen

Judge_Smails wrote on Mar 28^th, 2005 at 11:21am:

Just found the site and what a relief it is.  I'm 34 and if you can believe it I've been getting CH's since I was 4 years old.  I just started another cycle and found out that they no longer make the medication that I had been taking for the past 10 years (Sansert).  I'm getting by with Imitrex and have a Dr appointment tomorrow to try to find a new preventative medication.  Just glad to know that there are other people out there that know what I'm going through.

I had luck with Sancert too.

Sean.........................

Thanks, I'm going to run to the health store after work to pick up some kudzu - even if it helps a little bit that's better than nothing!

Ummmm

There is another avenue you may want to read up on as well

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It's always up to the person, but the anicdotal evidence of effectiveness is at least worth the read.

Harvard Medical is very interested in this information as well.  

Well, picked up some kudzu yesterday so we'll see if that helps.  Also had a Dr's appointment today and got a perscription for Prednisone and O2 so with any luck that will help me ride out this cycle.  Thanks for all of the info!

Youre welcome, There is a kudzu survey going on.. will you enter your results after your first week please? Have you got anything to take AFTER the pred? That is usually used as a taper while you are building up on something else such as verapamil for instance. On its own the danger is the CH will come right back when you taper off. O2 is fantastic. Love it to bits. Have you got the non rebreather mask to go with it? Thats essential or it won't work for you. Let us know how you get on again please!
Regards
Helen

I guess I'm lucky, my cycle only lasts for 4-5 weeks (3-4 CH per day), then disappears for 1.5/2 years.  So I'm a week into the cycle and the Dr said the Pred was 3 weeks worth, so if all goes well I should just about make it to the end - that's if the Pred works.  

It's so hard going to a new med, it's the whole trial and error thing, and in the meantime you're suffering.  I've been trying Topamax for the past 4 days and it hasn't been helping so hopefully the Pred will do the trick.

I'll be more than happy to add to the kudzu survey, although I'm not sure if the kudzu or the Pred will be effecting my symptoms.

and there ARE pharmacists that will still make Sansert, but you have to look hard.

Well, just registered, so hello friends and fellow suffers.  It is good to be talking (typing) even if noone is hearing.  Just to know there are so many out there who can understand.  I guess there is nothing like CH to bring home the truth that misery loves company.  Here is my short history:

Started having CH about 12 years ago.  I just sweated it out and did not really get properlly diagnosed for about 4 years.  I finally got referred to a neruologist who positively identified me.  I was relieved and then shocked to hear him say, "we know how to label it - we know the symptoms, but we don't really know what causes it, what it is, or how to cure it."  I did not think there was such a thing in the modern medical world except rate diseases.  It is still strange to think they understand so little about the cause of CH and so little about the cure, though I have learned much from this site about possible treatments.  I am (please, God) just coming out of a cycle I think and I owe some peace to this site.  I read and tried the www one week into my cycle and it seems to have worked (I have a bottle of water right beside me now to make sure I am OK).  It was difficult being by the bathroom all the time for two days, but a small price to pay compared to meeting the Demon.

Question: anyone know how long I should keep drinking the water?  I still have a few shadows, but seem to be mostly free.  I am, of course, afraid to stop and have CH come back suddenly.

Question: I am struck reading the site about the wide use of 02 as an abortive.  I had not heard of that, nor had any doctors mentioned it to me.  What is the easiest way to get a set-up.  I would certainly like to have one handy when the Demon comes again.

Guess I will stop now.  This is probably a lot for anyone to read.  I am curious about how this group investigates potential causes or atributes that we may have in common that could lead to more understanding.  For example, for many years I thought that the CH might be related to a head injury I sustained about 1 year before they began.  I noticed that in the medical description of the site this connection has been explored but was not conclusive.  How many of us have had such injuries?

Welcome keith and I'm sorry you're here. You'll find oxygen info over there on the left. Print it and take it to your doctor. I don't know about WWW, never tried it. Look around the site here and gather info about other treatments also. There is one "study" that some of us are involved in that is proving to be rather promising. Here is a link to some threads about it. Read them all... there's a lot of info and it sometimes gets silly, but it's worth reading. Good luck and pain free wishes to you,
nani
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Thanks for the welcome Nani.  I thought I was coming out of the cycle, but just had a KIP 9+ yesterday.  Now I have started the Predisone and gotten some Imitrex injection medicine to abort if (when) the beast comes tonight.  Still hoping I am over the worse....

Hello everyone...

I was diagnosed with clusters over a year ago after suffering for years.  I won't go into the long story of getting to a diagnosis, but after I was diagnosed I did a ton of research and found this forum, joined but never posted.  I was perscribed prednisone to break the cycle I was in at the time I was diagnosed, and verapimil to keep the beast away, but dropped it all immediately when I found START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE as I am a huge advocate of treating the body with natures medicines.  And I have a funny little story about that, but I will share it another time.

I always found my headaches to be annoying, and sometimes even distressing but I have never had a debilitating one.  I always wondered if I was just lucky, had a high pain tolerance or if so many others were just whiners. (no offense intended)

Well, yesterday I had the mother of all clusters and I can say I have a new found respect for all of you.  

Historically my clusters have followed the typical pattern...  one around noon, and then if that one is bad I will start having them at about 8am and 8pm like clockwork.  I don't know what happened yesterday, but I woke up with a shadow and had a (for me) full blown cluster by ten am...  very annoying and distracting.  Well, it never started abating, and by noon I was in a whole new territory.  At one I realized this was far worse than my previous most painful experience of childbirth.  By 1:30 I was beyond myself, and my husband came to the rescue with .3g....  my pain dropped from a 9-10 to a 6-7 by 2:40, and then by 3:30 it was completely gone.  I cried I was so relieved, and I could not believe how simply wonderful it felt to feel nothing at all.  

Anyway, I have never posted here but I felt that after that experience I needed to share with you all my respect, understanding and comraderie.  I am almost moved to tears now just thinking about yesterday, and I am counting my blessings that the earth has given those of us who choose such a wonderful treatment option.  

To whoever started this forum... thank you, thank you, thank you!!

Hi samsara (my granddaughter's name's are Samantha and Sara   :)   )
DJ started this site and we are all very grateful to him for that. I'm sorry you're having a bad time. My CH has been kind of erratic like yours. Also a long story.
You have found a place with tons of info and support. Take advantage of it.  :)   Pain free wishes, nani

Thank you nani..  

one thing I have thought of today... is there a place where people post their histories/stories?  I would be interested to read about others with this disorder.  

You know, that sounds like a great thread to start on the General board. There is the getting to know you board, but not everyone posts there first. There really isn't anywhere else (except some of the guest book posts) specifically for our stories. Why don't you start one?  :)

I think I will do just that.. altho it may have to wait until tomorrow since I will be babysitting my three nephews in about 20 minutes... add that to my two and a neighbor friend hanging out and I have my hands full!  

Thanks for a great site !

Have suffered from what I have discovered (thanks to this site) to be the cluster headaches for around 15 years. It was so much of a relief to find what I had been suffering with.

Have been treated for various things, including sinus problems for years. As you can guess, with no luck ...

Soon as I found this site I printed out the the basic symtoms, made an appointment with Doc's, and presented him with the evidence, and he prescribed imigran injections, which work great.

Many thanks to all who make this site such a great reference for myself and fellow sufferers ...

I just wondered if if these headaches can be linked to any neck or upper spinal injury, as I have suffered more and more attacks since having such an injury, and the treatment of this injury mainly after physio on the affected area ?

Again many thanks, and keep up the good work !!!

da_massa out of Austin, TX-

yep, what they say is true, everything down here is bigger and I guess the headaches are no exception. I've "dealt" with this horror and have been successful until recently... seems like that's a story a lot of people are familiar with. It almost seems like the headaches are changing on me. At first they were the typical 90 minute helll on earth, but now the residual pain is lasting for hours and hours after the intense part. I thought I had a grip on these, or at least as much as one can, but it seems to slowly be taking over my life. I'm actually considering quitting my job as it is physical in nature and these headaches just leave me worthless. Has anybody experienced prolonged throbbing pain after the attacks? What can be done for them? I've tried valium and it doesn't seem to do anything. Is it possible to suffer from both cluster and regular migraines at once?

I wish this could be more positive being my first post but its been tough just hanging in here as of late.  

Hello, everyone!  My dad asked me to look at this site because he's been having these headaches for about a year now.  He says that everything that is talked about here fits him to a T.   I just wanted to say Thanks for all the great info and I hope he can get some better help now that he has more of an idea what this is.  Before he started getting these headaches a year ago, he had rarely, if ever, even had a little stress headache.  I have dealt with Migraines since I was about 16 and my youngest son gets them and can't go to school sometimes.  My sister gets them too, but Dad's are the worst.  He has the highest frequency and by far the worst pain.  He is a double above the knee amputee as well, so walking and such isn't really an option for him, but I have gone over there and watched him pull himself from his bed to his chair and back and moaning and crying and shoving his palm into his eye.  It's horrible and I really hope that by using the information he has found on this site and showing it to his doctor he can find some relief.  

*huggles*

Kikat

Hello Katya_moonchild.....interesting name.

*huggles* back to you for coming here for your father. Read all you can and print the best of it.

Can you get your father to come and introduce himself?

Hi Everyone,

  I am in week 3 of an attack.  Things are not going well at all.  The doc prescribed verapamil and RELPAX.  I have had these for 30 years and they never get easier to accept.  I got the above meds at week 5 of a cycle last fall and it seemed to zap them away,,, but now,,,,the verapamil is not doing anything that I can tell and I had to quit taking the RELPAX because it was causing my moderate to severe chest pains.  I am 47 yo and am HAPPY to have found you all.  It is about 3:00 AM here in AZ and last nite was the first nite without the RELPAX.  My headache has been bouncing between a 4 and a 6,,,, and at times going to 8 or 9.  I am so very tired of this.  I just don't have the fight in me anymore.  I normally only have a bout in the fall and on the left side.  This one is on the right side and the attacks are sudden and acute.  Thanks for listening to me.  The most succesful things I do are relaxation,,, oxygen and ice.
Larry

Hi, I am in the middle of a ch episode...have been pain free for five years.  Just saw a neurologist who tried to persuade me that my headaches weren't cluster headaches.  Help.  I need a good doctor in the Boston area.  Does anyone have a suggestion?

I just joined this site today. I wish I had known about it years ago. I'm an extreme chronic clusterhead. I'm in the 5th month of a 5 cluster a day cycle. I'm totally worn out. I feel the most sorry for my family. The docs are sending me to a surgeon, any info on that ?

Hi Larry what dose of verap are you on? there are alot of us here who take it and we are all on different doses.. you might need to talk to your doc about increasing. Check out the other meds available and read up on the o2 info to discuss that with your doc too. Personally I can't recommend it enough, its a life saver.
Let us know how you are getting on though and please please please ask as many questions as you like. There is a wealth of info here so use it!
Take care
Helen

dis wrote on May 10^th, 2005 at 8:52pm:

Hi, I am in the middle of a ch episode...have been pain free for five years.  Just saw a neurologist who tried to persuade me that my headaches weren't cluster headaches.  Help.  I need a good doctor in the Boston area.  Does anyone have a suggestion?

Hi Dis, nice to meet you and I'm sorry you are in pain. Take the cluster quiz on the left. There ARE other conditions which are very similar to CH but thankfully have meds which work better so you never know.. you might be lucky. Some like CPH are rarer than CH and so tend to get misdiagnosed as CH as they are so similar. Its worth doing. Read, read and read and print off anything that will help. I know Don recommended a doc for you on your other thread.
The rule is though that you have to let us know how you are getting on okay?!
PFDANS
Helen

alchemy wrote on May 11^th, 2005 at 6:04am:

I just joined this site today. I wish I had known about it years ago. I'm an extreme chronic clusterhead. I'm in the 5th month of a 5 cluster a day cycle. I'm totally worn out. I feel the most sorry for my family. The docs are sending me to a surgeon, any info on that ?

Hi alchemy nice to meet you even if it IS here!
a surgeon? yikes.. that sounds a bit extreme but obviously I don't know your full history. Maybe you could tell us a bit more about yourself and the other meds, threapies you have tried? Have you tried o2? I personally swear by it. Have a look at all the other info here and print off whatever you feel would be helpful to discuss with your doc. Its important you do that cos of potential reactions etc obviously.
Just remember, we all know exactly how you feel, we've all felt that desperation and the relief I felt when I found this site.. well I'm sure you know  ;)
Vent anytime, ask all the questions you want and be welcome,
I hope you get some PF time soon. I'm looking forward to hearing more from you
Regards
Helen

edited 'cos I can't spell and I talk too much!

Well, cool...   There is comfort knowing there are others out there.  Just joined.  First post.  Allow me to introduce myself.  I'm 37 and have had CH for as long as I can remember.  If I had to guess, it probably started late elementary/middle school.  Only got properly diagnosed about 7 years ago.  It's amazing how little doctors know about this.

I'm in the middle of a cluster.  After reading through the site I realize I'm lucky.  I will go about 18 months between clusters.  It's been 2 years since the last one.  They start off slow- CH- 5 days- CH- 4 days- CH-3 days, etc.  Then every day.  Then they taper off.  Total time about 6-8 weeks with 3-4 weeks of bad, daily CH's.    Used to be at the exact same time- I could set my watch by them.  This time it's different.  They're not at the same time and while I used to get no more than 1/day, I've had 2/day a few times.  

Pain is unbearable, but short.  Total time around 60 minutes.  But completely debilitating.  Always right side.  I honestly don't know why there aren't more people who off themselves.  I have truly been tempted during really bad CH's.  I feel for you chronic sufferers out there.  

Imitrex helps, but only within a very short window.  If I don't take it as soon as I feel it coming on, I may as well not take it at all.  Haven't tried injection (didn't know there was such a thing 'til I read about it here.)  I have the 100mg tabs.  Imitrex will take a 10 to an 8 or so.  Will still get breakthrough 10's from time to time.

My secretary says, "yeah, I get migraines too."  "No, it's not a migraine,"  I say.  Nobody understands how bad the pain is.  I read where CH's can be 100 times more painful than migraines.  Yup, that's about right.  You never read about a migraine sufferer trying to stick their thumb through their temple.

Wife is very supportive.  I have a very high pain threshhold.  I once played two innings of baseball with a broken tibia, then drove a stick-shift home.  Sure, my leg hurt like hell, and I couldn't put weight on it, but I had no idea it was broken til I couldn't walk the next morning and finally went to the doctor.  

Wife has seen that and then me writhing on the ground crying, moaning, praying, asking why me (I thought I was the only one who did that), trying to push my thumb through my temple thinking that will make it go away, seeing my face totally disfigured because the right eye is shut and droops and waters so profusely that I swear it has exploded.  She then figures the pain must be pretty bad.

I can't touch alcohol while I'm going through this.  Red wine is death.  And I love red wine.  I got a CH after a few sips of red wine one time that was so bad, just the thought of red wine when I know I could have a CH makes me sick.  I can normally have a single, vodka drink after a CH, but abstaining this time because I'm having more than 1/day.

Long post, I know, but it's very cathartic to be able to write this knowing that there is a community that truly understands.

Thanks for listening.

Welcome Mark, its nice to meet you even while I'm sorry you have to be here. You've already learnt something I see! Imitrex injections work extremely fast compared to the tabs, 5-10 minutes and there are nasal sprays too which take slightly longer for me but which some people swear by. One thing we all learn fairly early on is that works for one of us will not work for another which makes CH a pretty tricky little blighter! Have a good look around and read up as much as you can. There are some fantastic treatments available and some alternative type treatments which alot of people have had alot of success with. I'd strongly recommend you discuss any options with your doctor. None of us are doctors and we don't know your medical history so you do need to discuss combinations with your doc.
I'd recommend O2 as an abortive highly. It works fantastically for me and I swear by it (and while taking it but thats another story!)
Get your wife to come and have a look around too. We have a fantastic section especially for supporters to get some support from and to learn more from but she IS welcome on every part of the board.. we all know how much we need our supporters and I'm very glad you have one.
Take care, let us know how you are getting on (that bit is obligatory ;) and remember, you aren't alone okay?!
Regards
Helen

Thanks for the kind words. I've had clusters about six years now. at first they treated with lithium and pain pills I can't remember the names of. I moved from Phoenix to Maine and the nueros up here have tried verapomil I'm taking about 960 mg a day nuerontin, imitrex injections stadol oxy's nothing will break the cycle. I can't sleep can't work and obviously can't spell sorry about the grammar. my memory is gone. I get lost in my own neighborhood. trying to hang in, but it gets harder everyday. tried suicide in nov. obviouysly didn't work

[quote author=LeLimey link=board=knowya;num=1076441006;start=125#128 date=05/12/05 at 18:38:23]Welcome Mark, its nice to meet you even while I'm sorry you have to be here. You've already learnt something I see! Imitrex injections work extremely fast compared to the tabs, 5-10 minutes and there are nasal sprays too which take slightly longer for me but which some people swear by.........

Thanks for the words.  The imitrex nasal didn't seem to do much for me.  I'll see if I can try the O2.  I'm also really wanting to try the injections.

The Beast has not visited in a little over 24 hours, so I believe I'm on the downside now.  We'll see...

I sent my wife the link to this site and she's lurked around a bit.  It has helped her understand a bit.

Thanks again!

Hi again Mark, I'm pleased to see you are ready to try new treatments and I really, really hope your cycle is on the end now too. The imitrex injections will be a great help to you and as for the o2.. well.. I'm really pleased you are going to give it a go as I can't praise it enough.
Hello Mrs Mark! Its nice to meet you too. Come along and say hello, we don't bite even if we seem like a bunch of nutters!
Take care of yourselfs, PFDANS and don't forget to keep us updated okay?!
Best wishes
Helen

:-/

Hello everyone,

I'm sure glad I discovered this website--thought I was suffering alone for what has seemed an eternity!

I am a 26-year-old female with a history of migraine headaches, but this January when I had my first episode of cluster headaches I discovered what REAL pain is!  

Reading some of these posts gives me real hope for overcoming this Madness--

When I read messages from some of you who have suffered for 20 years i am in total awe!!  I have been diagnosed by 2 family practice md's a neurologist and and internal medicine doctor--I have tried SO many medications and really have found no relief.  I am now taking narcotic medication and feel extremely guilty because i am only masking my pain--I feel like I am not strong enough to handle it--I am waiting to see a different neurologist but must wait 2 months to get in.  I am going to see my family doc tomorrow  I am worried that he will not refill my narcotic medicine--my worry is not that I will not have narcotics but that I will not be able to handle the pain.  I am right in the middle of a cycle.  Any ideas on how to cope with pain?

Hi Jillian, I'm sorry you are suffering - we know how it feels  :'(
Narcotics are not the best way to go for CH. From what I understand of others expereiences they might at best mask the pain but they won't get rid of it and its just left there lurking waiting to come back. Have a look on the meds board for recent posts on this.. there are quite a few!
Read up on what is here for better CH meds. You want to be looking at abortives and preventatives. Abortives work on individual hits and prevents on the cycle.
As a "for instance" I'm taking verapamil as a prevent and using o2 (which I can't recommend enough!!) for an abortive. Imitrex injections are a good abortive too but they aren't suitable for everyone. One thing you will learn about this beastie is that no two people get it in the same way and so no two people take the same combo/dosage of meds. Its a bit of trial and error but I know you will find your silver bullet!
Check out the kudzu thread as well under the meds and therapies board. ALOT of people have been having outstanding success with that and also psilocybin and LSA seeds. I would strongly urge you to discuss any of these with your doctors as they know your full medical history and we don't. None of us here are doctors.. but we are knowledgable about this buggering affliction and we do care and we WILL help and support you!
Ask all the questions you want, there is always someone around. Oh and it is COMPULSORY that you come back and let us know how you get on okay?!
PFDANS (pain free days and nights)
Helen

Hello fellow suffers,

I have had head aches for all my life and they have probably been cluster head aches. It has been refreshing to find others with the same symptoms. Mine are behind my left eye, although for the last two years or so, I have had them behind my right eye too. I have not found a trigger or a good preventative treatment. The neurologist had me taking Inderol but I found that it made no difference. It had the side effect of lowering my heart rate to below 40! For treatment, I find that the same medication does not work every time. At the moment I am taking Relpax, but it knocks me out terribly. Last night I had a 7+ episode and I did not get relief for several hours after taking the medication.

My episodes seem to be occuring weekly. Very often I will wake up with a 2, and it will go away as I shower.

I also suffer from depression and I cannot help wondering if the demons are linked. I am intrigued to find out if anyone else shares this.

I also happen to be a devoted Christian so if there are fellow suffers who share my faith, I would be glad to hear from them too.

Hi Gavilan,
Sorry to hear you're on a bumpy ride right now.  A couple of things you say in your post make me wonder if you've got an accurate diagnosis of cluster, though.  You say they're hitting weekly?  And that they are lasting for hours and hours?  I'm wondering if you're maybe having migraine as opposed to cluster.  Those two attributes really are more indicative of migraines, which also suck really bad (I'm a migrainer, my hubby is a clusterhead).  
I see you're in Delta - we also have a Canadian cluster headache website and we have a lot of sufferers in your area.  One of them might be able to direct you to a cluster knowledgeable neuro that can help you make a plan for pain management.  Please feel free to come on over and introduce yourself!!

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We have a message board just like this one as well:

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Depression and headaches are quite often companions - you're sure not alone with that.  Both cluster and migraine are semi-manageable with different treatment plans, but there is no cure for either yet.  That's why these support groups are so vital to everyone's survival.

Hang in there, friend - my prayers are with you. ;)
Margi

Hey,  I think God lead me to this site,  I have been battlin the beast since I was 18,  now 42. I just started up after 18-20 months pain free,  nothing like that 1 am wake-up call and a shot of imitrex.  I found lots of new ideas here.  Keep up the fight

Hello allnight and welcome! I'm sorry you have to be here but I'm very glad you have found us. Tell us a bit more about yourself and your cycles.. how long they last, do you use any prevents etc? There is loads of advice here which you can read up on and my personal recommendation to you is that you consider O2.. its been a lifesaver for me and I love it. Have a good old read, ask all the questions you want and (this is VERY important!!) Let us know how you are doing okay?
Take care
PFDANS
Helen

Thanks for the welcome,  I have 3-4 CH a day at the peak of my cycle with what I call 2-3 transient headaches (small ones I can handle without meds).  Then I end up with about 2-3 real screamers that take me to the ER for a shot of Demirol or something that knocks me out cold. I have used O2 but my Dr. is unwilling to prescribe it and I not sure how else to get it.  I've been to 4-6 nuerologists I don't remember the number. 2 retired,  2 could not do anything for me and 1 thought I was an addict.  Althought I do use Fiorinal with codiene for my daytime ch's and it works well enough after 30-45 minutes.  I have had only 1 CH today and I am hoping that my cycle is over, its been almost 2 months. pray for me as I will for everyone that suffers from the beast.  Keep up the fight and never ever let it beat you...Phil

Welcome to Clusterville, Allnight.  There is a great deal to learn on this site, and you should research the O2 info (link on the left side of the page).  Many members of this board use O2 very successfully, and there is good information which you can print out and take to your doctors in order to get the rx you need.  It is also important to use the correct LPM and the non-rebreather mask.  Stick around and keep posting, because there are many headache gurus here who can give you a lot of help regarding meds as well as the proper use of the O2.  Here is one very good link that can help get you started with info--one good source to print out. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Good luck with your research and stick around to let us know how things go.  PFDANS to you.  Pat

Hey everyone,

I'm 30 years old and I've been getting episodic cluster headaches since I was approx 21. My episodes generally last approx 3-4 weeks. I get maybe 2-3 attacks during the day (kip 3,4,5) and 1-2 attacks at night after falling asleep (kip 7,8,9).  I fear the nighttime attacks so much that I try to avoid sleeping, and when I do sleep I try and do it sitting up in bed.  As you all probably know, it doesn't work.  

My father also suffers from this monster, though since he hit his mid-fifties he's only gotten it once.  Still, he's been a great source for me to talk to as he has 30+ years of experience with this under his belt.

I generally get my episodes at the start of the second week of November. One thing that worries me is that over the last couple of years it's been jumping around quite a bit.  A few of years ago, I had my episode in August.  The year after I had it in November as per norm. Then last year I had nothing at all.  I personally think I missed it because of the stress of planning my wedding.  Anyway, This year is the first time I've gotten it in May.  This is worse than the anticipation of November because now I never know when I'm gonna get hit and if I'm going to start getting them more than once a year as I do now.  My dad can't remember this happening to him.

Speaking of my dad.  I remember as a little boy, waking up and seeing my dad sitting on the edge of the couch in the dark holding his head and rocking back and forth.  It's kinda traumatic for little kids, or it was for me anyways.

One really frustrating aspect of cluster headaches is the fact that there are very few physical symptoms other than my really red, watery, and droopy right eye.  For the amount of pain that I'm feeling, I should have something more pronounced, like an alien head popping out or something, just so people will really understand what I'm going through.  

For treatment, I have the following:

1. Hot showers (I don't know why, but it sometimes aborts kip 2,3 and 4's)

2. Long walks (for the kip 7,8,9's and generally at night time thank god, because I look like i'm drunk)

3. Rocking back/forth in dark, holding area near right eye and making misc noises (when they get bad)

4. Music. (In conjunction with walking, or rocking back/forth)

5.  Every year there is a different "tripan" that my doctor want me to try... none work, not even those fast acting under the tongue things... though to be fair, none of the above I've mentioned really does anything for a kip 7+

6. There is another medication my doctor prescribes to assist in reducing the frequency of my attacks, I've not used it this year because I don't really think it works.

7. I've been reading about Kudzu and Meltonin on the message boards so I went out today and bought some of each.  I figure I'll take x2 tablets of Kudzu (nature's way) three times a day as recommended on the bottle and 2-3 tablets of Melatonin (wisdom of nature) 30-45 minutes before going to bed.  I really hope this helps me.

A couple of things I DON'T do that I've seen some people post about are:

1. Bang my head or hit myself.

2. Consider suicide.

I'll assume that the reason I've not considered the above is because my cycles tend not to last more than a month.  It may be different if I were suffering for month's on end or if I were chronic.

Has anyone else gotten really superstitious about thier headaches?  For example, if I see any mention of an episodic switching over to chronic in any message board, I immediately blur my eyes and skip down the page.  Also, when I'm not in cycle I try not to think about it at all, for fear of bringing it back.  It's silly but I can't help it.

I'm sure there is more to say, but I feel like I'm going to get one in a minute...  Can I get an episode from staring at the screen too long?..

Thank you for this site,

bye.

HELLO I AM NEW TO THE SITE AND MY CH ARE A LITTLE DIFFERENT. I GET HEADACHES THAT LAST AT THE MOST 45 SECONDS BUT THE COME AND GO ALMOST EVERY 2 MINS. THEY WAKE ME UP AT NIGHT, MY NOSE AND EYES RUN, I FEEL AS IF I AM ON THE VERG OF AN ANNYREISUM. I HAVE HAD THESE HEADACHES FOR ALMOST 4 YEARS AND IT AFFECTS MY WORK, PERSONAL LIFE EVERYTHING I DO I CANT EVEN DRIVE BECAUSE MY SIGHT LEAVES ME WHEN I AN HAVING THE HEADACHES. WHAT I JUST CANNOT UNDERSTAND IS THAT EVERYONE ON THIS SIGHT HAS HEADACHES THAT LAST FOR ABOUT 30 MINS OR SO MY HEADACHES LIKE I SAID LAST 30 - 45 SECONDS EVERY 2 MINS. ALL DAY. I CANNOT FIGURE OUT WHY. I HAVE TRIED EVERYTHING AS A REMEDY EXCEPT INJECTIONS AND O2 ANY SUGGESTIONS?

wrote on May 25^th, 2005 at 2:30pm:

HELLO I AM NEW TO THE SITE AND MY CH ARE A LITTLE DIFFERENT. I GET HEADACHES THAT LAST AT THE MOST 45 SECONDS BUT THE COME AND GO ALMOST EVERY 2 MINS. THEY WAKE ME UP AT NIGHT, MY NOSE AND EYES RUN, I FEEL AS IF I AM ON THE VERG OF AN ANNYREISUM. I HAVE HAD THESE HEADACHES FOR ALMOST 4 YEARS AND IT AFFECTS MY WORK, PERSONAL LIFE EVERYTHING I DO I CANT EVEN DRIVE BECAUSE MY SIGHT LEAVES ME WHEN I AN HAVING THE HEADACHES. WHAT I JUST CANNOT UNDERSTAND IS THAT EVERYONE ON THIS SIGHT HAS HEADACHES THAT LAST FOR ABOUT 30 MINS OR SO MY HEADACHES LIKE I SAID LAST 30 - 45 SECONDS EVERY 2 MINS. ALL DAY. I CANNOT FIGURE OUT WHY. I HAVE TRIED EVERYTHING AS A REMEDY EXCEPT INJECTIONS AND O2 ANY SUGGESTIONS?

Sounds like CPH or SUNCT.  Have you tried indomethicine?

thomas wrote on May 25^th, 2005 at 6:17pm:

Sounds like CPH or SUNCT.  Have you tried indomethicine?

Ditto....do a google search on what Thomas posted.

SUNCT:
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Hi, brand new to this site. Just trying to post my first message. Spent the last six hours trying to learn about my beast and ended up here after 4 hours of research. I am positive that my condition is connected to the trigeminal nerve. I believe I am currently a chronic cluster headache sufferer of 5 years. I was just a come again gone again cluster sufferer for the 7 years before that. The only symptom that I have never had is that leaky sinus problem. Otherwise, it all sounds extremely similar to what I experience.  So if anybody is out there, HI.

Hello everyone.  Sorry to see that there are so many people that go through clusters.  I've been dancing with the beast for 29 years worth of episodes.  Woke me up 3 times last night.  I'm going to spend some time going through this website and see what I can find or if I can help anyone.  As much as I hate to see so many going through these it should at last be good to be able to talk to people who really understand.  

Rickf

Welcome,  sorry that you had to seek us out and are a sufferer yourself, but very glad you found us.

This place is loaded with information.  I still consider my self new even after a month and a half just cause I am still learning a lot.  

Be a sponge and soak it up.
PF wishes......Kim

Brainpain101

Welcome to the family.  

You don't have to have all the symptoms to be considered a CHer but you end up having a majority.  

Take a look at the left for meds and treatments and take it to your doctor.  Get what you need.  Arm yourself and knock the beast out.

We all are here for you.  Ask anything you want someone is sure to be able to help and that goes for all newbees.

PF wishes.......
Kim

I'm new too. Signed up this morning, after reading all night.

I thought I had migraines, but now I know better. I guess I'm luck I'm not chronic. I thought my condition was about as horrible as it gets, so I can't imagine going through this stuff all year long. I was PF for 2 years, and 6 weeks ago started a new bout.

I hope to learn and share, and pray that someone somewhere finds a cure to save us all.

I live in Hollywood, FLA. If anyone knows a good neuro, please let me know. Mine retired 3 years ago, and the new one assigned to me just continued what the old one was doing. I'm going to see him tomorrow, coincidentally, and plan to talk to him about CH.

GOOD DAYS AND PEACEFUL NIGHTS TO EVERYONE.
Jose
;;D

welcome here and im sorry you are here cause we all know what brought you here and its not a nice thing but for the day i found this site was the day thing started to get better, as they say knowing is half the battle , for me i went years not knowing what i did to deserve such a horrible punishment, i thought all kinds of scary things , is it a tumor, do i have brain cancer, did i do to many drugs when i was younger,did i get this from a bad bang to my head, hell mabey im possesd , .
i cant even count how many times i sat in the er at the hospital in tears begging to be knocked out, while everyone kept saying im over reacting , its just a headache it will go away, ect ect.
today thanks to a click of my mouse on a link on a news web site i foung this site ,when i read the discription of a ch i started to cry and this feeling of relief came over me and for the first time after years a sheer hell i know what it is , i know its workable , im not dying from some strange brain disorder , and single most important thing IM NOT ALONE, today im still a ch head , but i have an arsonal of things to battle this evil heartless beast, and i can help others with what ive learned , in the last yuear ive met two other people that have this and didnt know what it was today they know and we share and talk on the phone when things get bad.
welcome to everyone that is just getting stay aroung the people here my be the only true people youll meet that truly understand what it means to live in hell and they will help you anyway they can to teach you how to fight back and get some sorta piece of mind hang in there and just know your not alone god bless you all and my you have a pf day

hi all hows your heads,mine is bad just injected imigran again brilliant stuff,i usually get 3 a day,they came back may 16 without warning.still anouther 2 to go today oh well. keep your chins up there is light at the end of the tunnel i hope  cu later carolyn05

Hi Carolyn nice to meet you!
Did I read that right? Are you using 3 imigran injections a day? The maximum recommended dose is two. I know how easy and tempting it is to go overboard though  :'( Have you ever tried O2? It is a brilliant abortive and works really quickly.. and no side effects either! Are you on any preventatives such as verapamil either? Take a look at OUCH UK.. specifically under the Treatments button at CD Oxygen and ask your doctor about it. I promise you it will make things alot better for you! You could also give the OUCH UK helpline a ring. Its manned by sufferers (ansaphone, leave your details and they will call you back)
Let us know how you are doing okay?!
Take care
Helen
OUCH UK website
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OUCH UK helpline no 0161 2721702

Hi to all

This site has brought about the first pain relief I have had for these headaches in 14 years. All the doctors I saw could not help. They gave me all sorts of stuff. I found this site, got info on oxygen, and after going to a couple of doctors finally got the script for O2. Have used it successfully 4 times so far in 2 days. I have never felt so empowered and happy. I know I will keep on getting the HAs, but now I can at least fight them.

The guys here are so helping and caring. If you are new to this site I suggest you read and read and print up the info that is available and go to your doctor and demand Oxygen.

Paul

Hi, all...

New to the board.  Unhappily, headaches have returned after a 5-year hiatus.  During that hiatus, I took verapamil 240 mg SR every day, and exercised regularly.   Perhaps this kept them away (I used to get 1-2 month cycles every 6 months or so).  Now I've increased verap to 480 mg/day.  I don't think its abortive effects have kicked in yet.  

Last cycle I did acupuncture and don't think it did any good.

This cycle I'm using injectible Imitrex for the first time.  It's a godsend.  Headaches disappear within 1-2 minutes after shooting myself up.  Normally I get 2 HAs a day (4 a.m. and noontime), so I'm at the Imitrex limit, although my internist said I could take 3-4 injections a day if I really had to.  I'd prefer not to.

When I was headache-free, I would run 6 miles a few times a week.  When the HAs first came back a few weeks ago, it was always at the end of a run.  Needless to say, I have stopped the 6-mile runs.  I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on.   Weird.  Does anyone else experience this?

This board is great because most people I know don't know a thing about this strange malady.  Thanks for running it.

Hugh

HughB wrote on Aug 11^th, 2005 at 1:45pm:

When I was headache-free, I would run 6 miles a few times a week.  When the HAs first came back a few weeks ago, it was always at the end of a run.  Needless to say, I have stopped the 6-mile runs.  I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on.   Weird.  Does anyone else experience this? Hugh

In the past I've been able to narrow it down to activity with prolonged increase in heart rate, over 35 minutes in length when in cycle. Tends to take me a lot of nerve to get out running when in cycle to test further. This time of year, I think that changes somewhat to include exercise of any type that gets you up to that point of feeling red-hot flushed in the face. Simple answer, yes I do. Some others however find exercise helps them abort. Go figure, that's CH for you.

Scott

HughB wrote on Aug 11^th, 2005 at 1:45pm:

This cycle I'm using injectible Imitrex for the first time.  It's a godsend.  Headaches disappear within 1-2 minutes after shooting myself up.  Normally I get 2 HAs a day (4 a.m. and noontime), so I'm at the Imitrex limit, although my internist said I could take 3-4 injections a day if I really had to.  I'd prefer not to.

Hi Hugh..

Nice to meet you, sorry it has to be here, but glad you found us, Welcome aboard....

Have you looked at the TREX inj tip to the left... and the other tips there... They are all pretty good.

Be careful with how much TREX you do take in a 24hr period... The tip might help you cut down that 24hr amount, I can abort a HA with 1/3 of 1 shot..

I use the O2 to abort about 90% of my HA's now, but everyone is different...

Wishing You Pain Free Days & Nights
Charlie

HughB wrote on Aug 11^th, 2005 at 1:45pm:

Hi, all... When I was headache-free, I would run 6 miles a few times a week.  When the HAs first came back a few weeks ago, it was always at the end of a run.  Needless to say, I have stopped the 6-mile runs.  I find, however, that if I do a lesser duration of cardio exercise at a lesser intensity, the headache doesn't come on.   Weird.  Does anyone else experience this?

Welcome Hugh.  Sorry you have to be here but glad you found us.  I've been episodic since 1999, with one cycle every year but not all cycles were really bad ones(which is lucky compared to others on this board).  It never made any difference during my earlier cycles whether I exercised or not - until this last one.  Just getting to the point of sweating and I would get hit -big time.  But I also found out that just sitting down to watch a little TV after dinner in the evening, I would also get hit - big time.  So, I had to keep busy and active all day (and most nights) without ever really getting enough exercise to get my body heated up, and without being able to relax even just a little at night.  Wierdest cycle I have ever had!  Can't explain it - just the beast doing his darndest to keep me off balance.  
:-/   Hang here.  There is a wealth of knowledge and experience with the people on this board.  Sending you vibes and hugs  [smiley=hug.gif] for PFDAN.

PS  without the exercise, I've also gained a pound or two

Sandy :(

Hi to all the new people and the old!

This is the best site in the world for everyone around the world with CH and CH families.

ALL FOR ONE AND ONE FOR ALL!

Against the BEAST we ALL stand TALL!

PFDAN's to everyone! [smiley=wave.gif]

Hi all,  New here, will post more later but wanted to introduce myself.  I get headaches about 2-3 times a month, Dr. say's they are clusters... I use Imitrex when I get them... This looks like a very supportive group... can't wait to read more but since I'm at work I better get back to work b4 they catch me ;)

Jim in Phoenix

Welcome Jim,

Head pain sucks like no other!!
There is plenty to learn here so please do so. There are a few HA that present themselves similar to CH but differ in location, duration and sometimes intensity.
You mentioned 2-3 per month. Do you mean MAJOR BAD ONES and the rest are under contol with preventative meds or really 2-3?
I ask this because Most of us are lucky to get that per day for a certain amount of time if episodic and for those of us who are chronic may get that daily without break for yrs.
I am not a doctor yet here you will find over a milenia worth of CLUSTER and other HA expertise that can help.

Take the cluster quiz located on the menu and see what comes up.
MAny go yrs. misdiagnosed or undiagnosed as something other than Cluster and there are several people we have met that get diagnosed with CH but do not have.

We just want to guide you regardless.

So take the quiz and ceck in again!

Warmest wishes,

Eric

TY Eric,
Well, I've had 2 different Docs tell me 2 different things.  One said I have Migraines, the other said they sound more like Clusters??  I go through cycles, sometimes I get 2-3 headaches every day (usually in the afternoon) sometimes I can live thru these without taking imitrex (usually take Excedrin or Naproxen sodium followed by Tylenol followed by another dose of Naproxen), they are what I call low-grade headaches... they don't go away but they don't become unbearable during these periods.  at other times, they become unbearable and I can usually tell when they are going to get to that point.  When they get bad (if the naproxen/tylenol/naproxen doesn't help) I then take Imitrex.  They don't go away on imitrex, I just weather them out so to speak.   I guess I'd say it this way; I rarely go thru a day without headaches but I only have the bad ones a couple of times a month.  My headaches are always behind my eyes and I always get a bad one when cloudy weather rolls in which is one of the reasons the one doc says they are clusters.  So, let me know what you think?  Thanks again for the welcome and warm wishes!

It sounds like it could be a number of different HA types.


If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset:

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We are definitely a rare breed and I sure as hell hope it is not what you have.
Pain sucks regardless!!

Hello all,


You guys are all awsome and great people. You all have made my life and my wifes a little easier to deal with.



Big Hugs

PS

any conventions or get togethers planned?

   Hello to you all.  My name is Scott, 35 years young.  I am new to this site, but all to familiar with the monster.  Been fighting them since I was 18.  Sitting here late on Friday night, afraid to lay the head on the pillow.  I figure I get them when I'm awake, but much worse at sleep hours.  Anyway I guess you all know that, which is a relief, because that way I don't have to explain it to you like I do to everyone else. (they probably think I am a faker or a whiner)  So just a little info for you all.  Married, two boys 5 & 8, work as a Case Manager for the department of corrections. ( lately I'm the case, due to the cycle starting again)  But I'll quit rambling on about that.  I look forward to getting to know you and I amhere to help or listen if I can.  Talk to you soon.

Welcome Baked and niteowl. Sorry you had to find us, but this site has tons of info and support to offer. Read all you can, and ask questions.
Baked, there is a meetings board on the index, look there for local gatherings. There is also our bif OUCH convention every summer. Next years will be held in Milwaukee.
Pain free wishes, nani

Hi! I'm Kim and my hubby Todd  has suffered from ch for 14 yrs. We are both so grateful to find your website and all of the info on clusters! I've been reading EVERYTHING on here for five days now. Thanks to this site, I went with Todd today to the doctor's office and was armed with printouts. He now has oxygen and new meds. I wrote quite a bit about it on the top  ch thread under "O2 question" topic.

Thanks to your site, Todd's parents, my family, and some of our friends now know more about ch and have a small glimpse of what he's going through. No one, other than myself, has ever seen him during an attack.

We've been married for over 16 yrs, have a 14 yr old son and an 11 yr old daughter. Todd is an adult probabtion officer and I'm a teacher.

Thanks again for all of the info and the support!

Kim

Hi Kim, what a lovely story! I'm so pleased you were able to arm yourselves with info to get better meds for Todd.
O2 sometimes takes a while to get a handle on, don't be afraid to ask for tips on how to use it if you don't feel you are getting the best results okay? The mask is the key issue and you need a non rebreather mask (the one with a resevoir bag) at least.
Let us know how you are both getting on okay?
Regards
Helen

hi kim nice letter glad the info you found here helped, the people here are great and they're support is wonderful. keep posting and let us know how you're making out.

Hello all, my name is Neal. I wanted to introduce myself, say thanks for the info, and chime in on my CH experiences.

I began having CH nine years ago at age 21. And have experienced roughly 4 cycles since then. Presently I am enduring a quite intense battle that prompted me to seek out more information on this beast!

My main medication is Maxalt. It does the job if taken before my HA starts, but that doesn't help me much at night.  I spoke to a Nuerologist friend of mine who says that the Maxalt may not even be helping me at all. Who knows...My own father is a Internist, and even he claims no cure at this point!

Anyhow, I had a legitimate KIP 9 last night and made it, I am sure they'll get worse, but it is true "misery loves company"

Thanks all!  

Hi, Neal.  Welcome to our funny farm.  Sorry you have to be here, but glad you found us.  This website has probably the most in-depth, comprehensive information on CH than anywhere else in the world.  Be sure to read everything you can here because there is so much information that will be helpful to you.  Start with the buttons on the left.  Take the cluster quiz, check out the Kudzu threads under medications, ask questions.  There is no such thing as a dumb question on this site, believe me!  I've asked just about all of them.

If you are getting hit at night, try a little cocktail that seems to be helping a lot of us.  9 - 12 mg of Melatonin, plus a Benedryl.  Melatonin is OTC, and can be found in the health supplement sections of your drug store (I found mine at my grocery store.)

Jump right in.  Someone is here 24/7/365 so you will never be alone.

Sandy

Thanks Sandy! I will try that combo!

I am such a dunder head.  I sent a comment and after the comment was sent I find out how to register.  Okay I am a fellow sufferer for many years now...too many to count anymore.  I am Kathryn but most people call me kyt.   I never considered the water treatment but I do drink almost 2 gallons a day so I might float away if I drank anymore.  I was on Imitrex injetions for 2 years and one day I clipped a nerve and that was enough for me.  They didn't help much but instead of the pain being 200% blinding itdropped it down to about 175% blinding.  Well, I am glad I found a group who suffers as well.  One thing I would like to share with you is my bboss is a nit wit when it comes to these things.  All she tells me is take an aspirin and get over it.  Well.... I braved it all this week I actually went to work with a booger of a cluster and she actually told me her sister in law who works there too braved work with a migraine the day before.  I yelled at her to look at my face..so she said I could have smeone do my run (i am a bus driver) with me riding along....oh how swell of her... well we all know the outcome  i don't want to ramble

oh well once agan I am Kyt and thanks for being here

Hi everyone! What a great place. I am in the first round of CH, but going on week 5. I had no idea what was happening to me and why everynight I woke in excrutiating pain. Took a week of these before I went to the Dr. He diagnosed migraines. Then I ended up in the ER, and that Dr. said CH. When I asked my Dr. on a followup he said, "Dr's used to seperate migraines and CH, but basically they are the same. Just different symptoms!!
I have watched my husband and daughter suffer from migraines for years, but they were always able to function. I felt like such a weenie that this "migraine" was totally devistating me. Now I know!! There is a difference.
My Dr. prescribed Maxalt.  Any responses to that med? I appreciate any advise. Are they going to get continually worse every bout that I have? Will they stop all of the sudden or do they start tapering off? I have 1 and sometimes 2 per night. What are the shadows that I hear people talking about?
Sorry for being so long winded, but I have alot of questions and fears.
[smiley=huh.gif]
Looking forward to getting to know all of you. Just wish it wasn't because of these CH's.

hi Tanyae!!
welcome aboard ;;D sorry you had to find us but be glad as hell you did ;;D
best place for you to find out about CH
if your doc say that CH and meegranes are not seperable i would say to stick a hot poker in his eye whilst asking ' got a meegrane?'
i've never taken maxalt so cant say about  effectiveness.
try getting him to prescribe oxygen with a non rebreather mask and then get yourself a clustermasx from clustermasx.com
the best thing to do now is read read read ,ask questions read some more then go to the doc armed with an armful of printouts!!
Yours
Ian

Hello. I am new here. Just found the site yesterday. I am in the middle or hopefully the end of my first CH.
I am a 45 yo female, and totally confused. I had never even heard of CH, and now I don't know how to handle everything that has come my way and will be coming in the future. This is scary stuff.
I am relieved to know that the excrutiating pain is as bad as I thought. My husband and daughter both have migraines, but they are generally able to function while having one. I was beginning to feel like a weenie with these headaches of mine because they would totally take over.
My Dr. has put me on Maxalt and Tylox. Any input on those two drugs?
Will the CH bouts continue to worsen each time I have one? What does everyone mean by shadows?
What advise do you have for someone recently diagnosed?
I am afraid to go anywhere in the evening because I don't kow when they will hit. Sometimes they hit me before even going to bed, while watching TV...
Looking forward to hearing from you all.
Thanks for the great info that everyone puts out.
TanyaE [smiley=huh.gif]

tanyae wrote on Nov 26^th, 2005 at 9:38am:

Hello. Hello yourself. How you doin’? I don't know how to handle everything that has come my way and will be coming in the future. One way is to read all you can at this site. There is more info on CH here than anywhere in the world. I am relieved to know that the excrutiating pain is as bad as I thought. Huh? LOL! I was beginning to feel like a weenie with these headaches of mine because they would totally take over. You are not a weenie. You are experiencing the most painful condition known to man (and women).My Dr. has put me on Maxalt and Tylox. Any input on those two drugs? Tylox: This medication is a combination of a narcotic (oxycodone) and a non-narcotic (acetaminophen) used to relieve moderate to severe pain. Oxycodone works by binding to opioid receptors in the brain and spinal cord, and acetaminophen decreases the formation of prostaglandins, therefore relieving pain. Warning, Use this medication exactly as prescribed. Do not increase your dose, take it more frequently or use it for a longer period of time than prescribed because this drug can be habit-forming. Also, if used for an extended period of time, do not suddenly stop using this drug without your doctor's approval. For most CH sufferers pain killers do not help and may make things worse. Maxalt: aka Rizatriptan is used to treat migraines. It helps to relieve headaches, pain and other symptoms of migraines, including sensitivity to light/sound, nausea, and vomiting. Prompt treatment allows you to get back to your normal routine and may decrease your need for other pain medications. Rizatriptan does not prevent future migraines or reduce how often you may get a headache. Rizatriptan belongs to a group of drugs called triptans. It affects a certain natural chemical (serotonin) that constricts blood vessels in the brain. It may also block other pain pathways in the brain. Warning: DO NOT take Maxalt if you are taking Imitrex or any other triptan. Will the CH bouts continue to worsen each time I have one? Not necessarily but maybe yes. What does everyone mean by shadows? That is a feeling you get behind your eye or maybe a tender spot in the temple. It’s a very minor CH attack. Irritating as heck but not real pain, yet. It’s just the devil letting you know that she is not through with you.What advise do you have for someone recently diagnosed? Read this site. Learn all you can.I am afraid to go anywhere in the evening because I don't kow when they will hit. Take your Maxalt with you. And try to get a small tank of oxygen you can carry in your car. Or, try to get Imitrex injectors (if you can tolorate it). It can stop an attack in just a few minutes, quicker than the Maxalt pills. Sometimes they hit me before even going to bed, while watching TV... That’s something many of us try to avoid by staying active and/or stressed. “Stay stressed. Never relax. Never sleep. Ever.”

Thanks Bob for the write back. Scar stuff we're dealing with here.
I will keep reading, and reading like you suggest.
Looking forward to getting to know more of you.

HI Tanyae and welcome.

I am sorry that you have CH but the best way to deal with it is to know it.  Like Bob said read and read more.

Nobody can promise that it will become less severe but know this...

You will never be alone with this, we are here.
You are not a weenie, you must be strong to handle this and you will get stronger every time and when you wanna give up, we are here, we understand and we fight this battle with you.
It will be tough on your family and your normal life but you will find ways to work around it and cope and always remember we are here.
You are now part of our family and we are here for each other.
We, including you, are survivors, never forget.
Try to get your hubby to join the supporter group, he and you will benefit from knowing how to deal with CH and both get the support you'll need.

And like Bob said stay stressed, it is the best, relaxation is not for us CHers.

Jas

Hi,

I am new the site!  I am 32 and have had attacks since college.  I have been lucky and NOT had an attack in 3 years.  That all ended about a week ago.  I thought I was feeling better.  I was wrong.  I am having a bad morning.  An attack at 1:15 am and an other at 7:30 am.  2 Imitrex injections later and my head is dancing around another one.  

My doc has me on the Imitrex (Thank God) and Midrin.  All while waiting for the Verapamil to build up.  

Any tips to help with the anxiety?  I am also afraid I could become chronic.

I am sooo glad you are here!

Thank you

PF for 3 years.

In cycle for 1 week.

In my years here on Ch.com you are the winner of the "Farthest Thing From Chronic" award.

I am feeling much better than earlier today.  I have been doing a lot of reading on this site today.  Thanks again, to all the postings and information.

ClusterChuck wrote on Feb 11^th, 2004 at 12:35am:

To all newcomers, WELCOME ABOARD! A few thing I would like to tell all of you.  First and foremost, you need to read this link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE That link tells the history of this site, and about our illustrious DJ.  There is not a finer person on this earth! Second, get to know the people here.  There are some wonderful people here.  One of the ways to get to know us better, is to go to the chat room that a sister site runs.  To get there, go here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  There is normally someone there after 10 pm east coast time.  If no one is there, log on, and wait.  Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in. Get to know people, as you will form close ties with people that should last to the rest of your life.  Exchange phone numbers.  Talk on line, and talk on the phone to them.  These people can be an unbreakable life line for you, and you can be for them. Use this site to air your problems, questions, complaints, cry, whine, scream, shout, or whatever.  We are here to help you in any way that we can.  The one thing that we ask of you, is to give your support to others, also.  We are sufferers, and we are supporters.  As DJ said, this site is a help to us, in that we can get information and support, but we also get tremendous satisfaction from helping our brothers and sisters.   If you ever get a chance to meet another clusterhead or supporter, do so!  There is no better time than meeting them in person!  The bond is instantaneous!  And do not let the fact that you are in cycle stop you.  I have been to two of them, so far, and at both of them, I was getting hit.  All I did, was go to another room (I am the type that wants to be alone), suck on my oxygen, and when done, go back to the group.  Everyone knew what was happening, yet no one freeked out over it.  They were there if I needed them, but knew enough not to force themselves on me.  You could see the love and vibes in the eyes of each and everyone of them.  This is the only place where you can get hit, and everyone will know what you are going thru, and no one will tell you "Oh, it's just a head ache!  Deal with it!  Take a couple aspirins, and you will be fine." Sorry for being so long winded, but the above are things that have been such a life line for me, and almost every other clusterhead here.  Many of us say, that if it was not for this site, I would be pushing up daiseys.  That is not just a phrase, it is the God's honest truth.  When you are praying for your fellow clusterheads, and their families, give a special thanks to God, or who ever you pray to, for DJ and his amazing creation!  Also, thank DJ directly.  He doesn't post much anymore, but he DOES read all posts. Thank you DJ! We are a family.  Welcome to the family, and welcome to my heart. Chuck

Getty, thanks for posting this one from Chuck, it stays a GREAT Welcome and still is true!

Welcome to you!

I'm new to the site. My name is Thomas. My brother turned me on to this site, because he was just diagnosed with ch.   I've had ch for only a year.  diagnosed first with migraines then ch, then the mri showed a cyst in the maxillary sinus cavity. However after reading symptoms of ch I'm convinced that I have ch. One of my clints insisted that she drive me to the hospital when she saw the tears running down my face.   She kept telling me to lie down, and I kept stadding up. Kind of hummorous; if I wasn't on a deadline. I can not afford a  neurologist that  I can rely on. IC in colorado will help with a general practicioner, but not specialists, and I'm still paying off the $900.00 for the guy to read the #@%@ MRI.  I've gone back to school too get a better job with benifits, but with this episode hitting the first 4 weeks of the class. She (the teacher) just posted extra credit, bt it is not avialable to anyone who has missed more then 2 class periods. I'm still getting a high C, but figure to get into the school that I want to I need a B or higher. Any way back to the DR. he has prescribed verapamil 180mg once/day, and for that "instant" relief he told me top take over the counter Migraine meds. (we will be having a talk)
WOW I was just going to write a short note about myself, I guess I needed to vent alittle.  Thanks for listening. [smiley=confused2.gif]

Colorado_Loki wrote on Mar 8^th, 2006 at 5:50pm:

Any way back to the DR. he has prescribed verapamil 180mg once/day, and for that "instant" relief he told me top take over the counter Migraine meds. (we will be having a talk)

How can I say this in a nice way?

Your Doctor is a fucking idiot and knows nothing about CH pain if thats what he told you!!

Plus, your Verapamil dose is way to fucking low, talk to his ass about that!

Keep reading, you have alot of that to do if you have only been in this game for a year!

Arm yourself with Knowledge!

I agree- Jonny, and nobody could have said it better!!!

This is the only place where you can get good info.

PF now for almost 1 &1/2 weeks...yea finally after 35 + days. Now, I sound like a weenie.

Thanks to everyone here!!

Sheila

shenke wrote on Mar 8^th, 2006 at 8:15pm:

PF now for almost 1 &1/2 weeks...yea finally after 35 + days.

Congrats Kid, PF talk is always welcome here....it gives folks hope.

Weenie?.........I dont think so!...Nuff said!

I hope you sleep well, its one thing we all need.

Thanks Jonny- sure wish I could meet everyone someday.  This place has been the greatest gift.  Told my husband about the gathering - he thought I was crazy.  But everyone here at this site feels like family.

Guess I was crazy for a while, just glad to be PF now.  Need a break!!!  

Ready for a drink too, just scared.  Think I might give it a try in a few weeks...time to celebrate!!!

Sheila

Hello all,

I am so glad that I found this board.  I haven't had a CH since 1999 until last week.  I woke up with the worst feeling, not only in my head but just thinking that this was beginning again.  Last time it took me 6 months to get over the cycle.  It was pure hell.  Now 7 years later I have three children all under the age of 4 so I am really scared.  The last time I had them blood pressure meds and beta blockers did not work.  The only thing that did was periactin (antihistamine).  I loved it because I felt better but I hated it because it made me sleep about 13 hours a day.  With three kids I am really between a rock and a hard place on that one.  I am so happy there is a med that helped me but I don't know if I can function taking it now.  

My doctors had a hard time even figuring out what was wrong with me years ago because I am a woman and women apparently don't get them as much as men.  I told them that I had done the research and I knew they were not migraines but clusters.  I feel the burning starting in my head now and I am so scared to go to sleep because I know I will wake up again with one.  Last night I had one at 2 a.m. that was the worst I have ever had.  Childbirth for me was no where near to that in comparison.  I thought I was going to die.  I was screaming, rocking, banging my head.  This one took 60 minutes to go away which never happened before.

So I am going to try Allegra (non-drowsy antihistamine) that I am sure won't work as good (or if at all) as the Periactin did.  My doctor thought it would be more safe than falling asleep on my three kids apparently.  

Anyone else had luck with Periactin or any other antihistamine (sp?).  I am so glad I found you all.  I am sure it will make this cycle more bearable to have people to talk to!

Hello Ai, sorry that you had to have a reason to find us but glad you did. Read all you can, there is a wealth of information here if you take the time to look it up. Start a new thread here and introduce yourself, more people will respond. They kinda get lost in these longer threads. Reading your post it looks like your Dr isn't that informed on CH. Post what you have taken before and what your takeing now so that the more experianced people here can have a look. Anti histamines have never done much for me, nothing over the counter has. Anyhow hate that you had to find us but glad you did.
Matt

Welcome, ai. Sorry you have to be here, but I'm glad you are. There is lots of info and support here.
I've never had luck with antihistimines, and they are not a standard CH treatment. Look over on the left at the oxygen info link. It's very effective when used properly. Here is a link for standard CH treatments. Most people use a preventative and an abortive. Print these and take them to your dr. You should be able to get a prescription for oxygen and some meds as well.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Read, read and then read some more...information is your best weapon.
pain free wishes, nani

Thank you both so much!  I want to post a new thread but I haven't figured out how to do it.  I'm not used to this type of board yet I guess  :)  I really appreciate all the advice!  I will check it all out.  This site is great.  I will try and post a new thread tomorrow to introduce myself.  I'm about to try and get some sleep (until the monster wakes me up).  Unfortunately, I feel so much pressure building in the right side of my head that I know I'll be back up again soon!  Thanks again!

After a 3 year absense, I am back.   Remission is bliss, but the support here is incredible.

I am more frustrated than anything.  Feeling like a walking science experiment of Imitrex, Topomax and Stadol.  

Challenging this prick of a beast each time I feel a tingle in my nostril or a twitch of my eyelid.     I'd rather fight than be drugged.   Has anyone had success with O2 or water treatment ?   thanks,

I'm not quite sure how these message board things work but its worth a try.  I have been suffering from clusters for 7 years now and I'm about three months in this time around. and hoping for some relief soon!!!

Welcome everybody but sorry you are here because of having to deal with this horror. We all do or have done so. I've been free of it for about 15 years but I feel at home here. I don't know why the beast is afraid of me. There are some stories about an age factor. I'm 59 but for some, CH started in middle age. It drives me batty.  

Anyway, these goons know of what they speak. Lots of good stuff here.

Here is something that worked for me most of the time. It ain't easy but it's worth the effort:

         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Hi people

First of all, excuse me for my awful English.

My name is Daniel and I'm suffering CH since 2001. I'm male, 38 years old and got what I call myself the "standard" CH (mean, 20-30 days cicles once a year -usualy December, but this year... MAY!!!, grrrr-, waking up 2 hours after going to bed with the headeache, oneside insane pain, left eye burning, etc.). I must confess I smoke (and too much) and the only known trigger is alcohol when the beast is working. I'm also diabetic. Well. That's just the start. I wanted to introduce myself. Hope to keep on touch.

Thanks

Daniel

Daniel,

Welcome! :)
You'll find lots of information about ch right here at this site. And lots of people who know what you're going through. We come from around the world and we're here to help when you need advices/vent.

Best wishes & PF time,
Sanna

My name is Larry and I've been a CH since 2004. I'm a 57 year old male in Illinois.  I have epilepsy and sleep apnea...not that those are related.  I've only had one seizure in 1981 and been on dilantin ever since.  I use a CPAP for apnea.  The neurologist diagnosed me as CH almost immediately and put me on 10 lpm 100% Oxygen(thank goodness)  and found almost immediate relief.  In my first episodes I had tanks of O2 (2004).  Then I got an oxygen concentrator which filters out the gases out of the air except oxygen.  This way I can use it anytime I need it when I'm home...although I cant take it with me.  I'm going to the neurologist on Friday to see if there are any meds I can take with me to work and out away from the house.  I searched the site and found some I might ask the MD. about.  The episodes have been getting worse each year...that is more intensity and more headaches per day.  



Today is the worst day ever...I had 8 episodes.  With the O2 it doesn't get past 10-15 minutes.  How will I go to work???

Then I had 24 hours free...but...the demon is baaaack!!!

Larry

hi...my name is kaz and last friday i had my first headache...Ive never been one to get a headache but have had INCREDIBLY painful headaches above my right eye at 9.00am every day since. It goes from 0-painful in about 30 seconds! my eyelid goes droopy too. I sometimes feel like I'm going to pass out. About 12ish I'm feeling better. No painkiller as yet has touched it. The doctor says I have cluster headaches. I'd never heard of them so feel a little bit afraid. I'm a teacher and am worried because I dont know how long this will last, how long a break I'll get before the next 'lot'... It was great to find this site! I don't think I'm suffering anywhere near as much as many of you, but it's reassuring to know there are other's I can 'talk' to. I have 2 little ones to look after so this all seems a bit daunting at the moment. I'm looking forward to 'meeting' you all.  :)

Hello Kazzie its nice to meet you!
Has the doctor given you any meds yet or has he referred you to a neuro? Don't worry, we're going to do all we can to help you.  :)
Helen

Hi Helen,
I've been given 3 different things! I was on holiday when they started so saw a different doctor to my usual one. The first was maltex melt which I was to use when I got a headache...that did nothing so was then given something beginning with v (not much help I know but my own doc kept them as didn't think suitable) they were more for heart conditions so not sure why I was given them. My own doctor yesterday gave me Amitriptyline which apparantly is a low dosage of anti-depressant which he says can be effective in preventing the headaches. I took 1 last night but did get a headache this morning. It wasnt as intense though so maybe helped? I do however feel spaced out and weak which I guess is due to the tablet. I'd really appreciate any advice!!  :)

kazzie wrote on Aug 19^th, 2006 at 7:20am:

Hi Helen, I've been given 3 different things! I was on holiday when they started so saw a different doctor to my usual one. The first was maltex melt which I was to use when I got a headache...that did nothing so was then given something beginning with v (not much help I know but my own doc kept them as didn't think suitable) they were more for heart conditions so not sure why I was given them. My own doctor yesterday gave me Amitriptyline which apparantly is a low dosage of anti-depressant which he says can be effective in preventing the headaches. I took 1 last night but did get a headache this morning. It wasnt as intense though so maybe helped? I do however feel spaced out and weak which I guess is due to the tablet. I'd really appreciate any advice!!  :)

Sorry to meet you here, but welcome aboard.

The maxalt melt is an abortive.  It doesn't work for everyone, but if you use it at the very beginning it does work better.

The v is probably Verapamil.  It is a preventative which works for many people, but not all.  It takes a while to get into your system.

The antidepressant also works for some people and takes time to get in your system.

Since ch and related headaches are rare (in the medical community but not here), most of these medications were found to help as a side effect to the original purpose.  Many vascular and anti seizure medications may help.  Finding a treatment plan may take awhile. Sometimes the cycle is actually over before you have a working plan.

Did anything give you relief?  

If not, ask the doc about 02 and injectable imitrex, next.

Charlotte

Hello everyone, I'm back again after a few years departed.

I'm Jen, the wife of  CH Doug.  We have been married for 13 years, and have 3 kids...Doug has been a cluster headache sufferer for 8 years.

I guess that's all for now.  I'm just looking for a way to network with some people who understand what he and I go through.  He is in a long cycle right now, as this is the absolute worst time of year for him.

I was wondering, is it typical for the peaks to happen seasonally?  August and September are always really bad for him.

Thanks everybody!  I'm glad to be back.
JenH

wrote on Sep 3^rd, 2006 at 10:09pm:

I was wondering, is it typical for the peaks to happen seasonally?  August and September are always really bad for him. JenH

Seasonal attacks are very common for episodic sufferers.  For fifteen years my attacks have always occurred in the fall (Sep-Nov).  I did have one rogue cycle in the sumer of 2005 following an injury to my neck. Unfortuntely, my typical fall cycle still occurred although a little later than normal.

Hi Jen,

There's an area on this board where you can interact with other supporters, it's the "Supporter's Corner".

There's some great posts there...and lots of supporter's who give their idea and thoughts on how they support their significant other.

Welcome back...

Jean

Hello, I am the newest of Newbies.

But I am not new to Clusters.  I am in my 6th cycle since 1993.   From onset they had generally recurred every 24 to 28 months, with cycles lasting 5-8 weeks.  This past time, I had a 36-moth reprieve.  I thought I was in the clear.  Then about 3 weeks ago I started getting (non cluster) headaches every other day for about a week.   And finally, the tell-tale red-eye, sinus-drain, cluster.  

The doctors have been great so far.  I got in to GP and the Neuro within a few days.  That was all about 8 days ago.  They started me on 60mg prednisone per day.  I start tapering by 5mg per day today.  They also started me on 50mg Topamax per day then.  I start ramping up on it today.  Within the first few days of the Clusters return, I successfully aborted a few onsets with Imatrex shots (full 6ml, perhaps overkill), and even with 25ml Imitrex pills.  For the past 5 or 6 days, the prednisone and topamax have kept CH in complete check.  I have had a few minor tinges in my temple, but have not needed imetrex at all.

Of course, as I taper off prednisone, I am concerned that CH will sneak back in.  And as I ramp up on Topamax, well, I am concerned about the side-affects.  But that is my boat for the moment.  I just wanted to say hello, let folks know that I am managing ok, and that perhaps Topamax is doing some good for someone.  We'll have to see.  Hang in there.  

I'm glad I found this area; Previously, I thought I was suffering from migraines, but now firmly believe they are CH.  Been a sufferer since early adulthood (I am now 49). The symptoms match anyway.  It is truly amazing after reading so many letters that so little is known about this condition and treatment.  
So, if I have a method of treatment that works for me, should I run it past Dr. Greg first or should I post a new topic in "what works" area?

Hiya Bill,
Hope you're not still bleeding ;)
To be honest, I do not think that Doc Greg is still around.
Please feel free to post anything on what seems to be the appropriate board.
Good luck on your journey and please share your experiences and why you may now believe that you have CH.
Start with the Cluster Quiz though it is not a true diagnostic tool it is pretty damn close for us.
You may also want/need to find a Headache Specialist who is CH knowledgeable.
There are several HA types that present similarly yet differ in duration and responsiveness to medication so it is important that you receive the proper diagnosis so that you will get the appropriate treatment.

Good luck!

Ex2

Hello everyone.   I am a 37 year old female.  I have been pf for about 7 months.  the ch is coming back again.  I pray that it will stay away, but the tinge i feel is all so familiar.   I don't know what to do, since i got a new job working at night.  That's when the ch starts.  There is no way i can get through this.  I am raising 5 children and a grandaughter on my own.  Any sugguestions would be helpfull.  oh and my younger brother is also a ch sufferer.   Wishing everyone a pf day.

Thanks, karen

Hi all, I've been suffering CH since 1985. The first 10 years were misdiagnosed and untreated(I lived 500km from doctor), followed by 5 yearly cycles successfully aborted with cafergot, and 5 years of complete remission.
I wasn't too concerned this year when I felt the familiar signs return. Cafergot will do it's job. But it didnt have any effect at all.
Thats when I started studying this site, and learning more about CH because from my past experiences, our doctors are clueless.
I had a short course of prednisone, which made my CH worse, and irregular during the taper.
Last doc visit, I was given Voltarin. I just shook my head and vowed never to return.
So I am again unmedicated and waiting for the cycle to finish. (been 7 weeks now)
I make a strong coffee as soon as the CH wakes me, and I find that the pain subsides a lot quicker. Most of my CH are Kip 7-9, but mostly only last 20-30 minutes.
I know I should seek better medical advice, but my nearest clueless doc is 100km away, and the nearest neuro of any description is 500km away.
Anyway that's my story.

G'day Ed, and welcome aboard.  Your story is just so familiar there's any number of us here could have written it.  Glad you're getting some relief at least with coffee and there's lots of others attacking Red Bull with great results.  Seems to be the caffiene and some other stuff called taurine that Barry in WA knows much more about than I do.

Either way, stay well and we look forward to hearing more from you.

Cheers and beers,

Brian up north.

G'day Brian, Thanks for your reply. I have tried RedBull a bit, when I was away from home and had no access to coffee. Maybe I wasn't catching the CH early enough, but the RedBull would ease the CH back to a shadow but it would quickly rebound bigger than before.
I find the frustrating thing about CH is the variability of the success of treatments. Sometimes a massage of my temple, or the knot in the back of my neck, seems to relieve it immediately, and next time it makes the CH worse. I got 2 PF days/nights with prednisone, but the next week was the worst of this cycle.
One thing I am pretty certain of is the frequency and severity of my CH episodes is directly related to how idle I am during the day. This directly affects how much I smoke. Luckily I have a pretty physical job, and smoke about 20/day. On these days, I usually only get 1 episode during the night. If I'm office-bound, i tend to smoke more, and then I will get at least 1 or 2 before bedtime, and 2 during the night, and wake in the morning with another brewing.
So I tend not to complain too much about my CH because I know I can make the biggest difference myself, if I would just give up smoking.

edbeek wrote on Dec 8^th, 2006 at 4:06am:

I find the frustrating thing about CH is the variability of the success of treatments.

Oh don't we know about that!  Finally find the wonder-drug and complete cure and next time round not a sausage.

The upside is that treatments that have failed in the past might work this time.

Hi Ed
Barry from Karratha here, welcome to the best little nut house around.
There’s an absolute shit load of info here, what the people here don’t know about CH probably isn’t worth knowing.
I see you have tried the Red Bull, it’s a goer for me with the little hits when I get them now, the trick is to belt it down the throat as quick as you can & be icy cold.
Oxygen is my best abortive and works a treat for me, I have found a way around getting oxygen without having a prescription & the cost is comparable, if you want more info just PM me & I will pass the info on.
I’m chronic so I treat myself differently to what you may need but the principles are the same.

Cheers for now.
Barry

PS if you click on the Mushy's.com link at the bottom of this post it will take you to Mr Happy's site that holds the info on o2.
Cheers

Hi Barry, Thanks for the welcome and the info.
You are right about this place. I've learnt so much in the last week or so. I think one of the most valuable thing I've learnt is how fortunate I am compared to others here, and I tell myself this during every CH attack.
I'm hoping my cycle may have ended as I've just had 2 PFdans, and  it's been a 9 week cycle.

I am new here. I recently have been diagnosed with Cluster Headaches. I have been suffering from episodic types for the past 6 or seven years (Or longer). but was finally diagnosed by the ER doctor on the 11th.

I get them every year at this time, but this year takes the cake (The most pain I have ever felt).

I have been put on hydrocodone for the pain, but that does not usually take it away, but it does dull it and helps my left eye from watering. My cat scans I had recently came back negative so my brain is clean.

I have not started any drug therapies, but I know I don't want to be hooked on narcotics for pain.

Does anyone have a suggestion or recommendation?

This scares me, because some docs are just idiots.  Codine is not the way to treat CH.

Let us try to help get you sorted out, and make sure we know what we are dealing with.

Please take the cluster quiz on the left side there and let us know how you come out, and then please let us know how this particular beast effects you.  How long are your cycles, how long is each attack, what behavior do you have when getting an attack, whats worked in the past for you to help east the pain?

We want to help you, and knowing this gives us a good starting point.

Thanks. I did, and failed. I get a pressure on my lower neck. This pressure with a dull ache on my left side. The ache starts to move up my neck and into my left ear, then starts to get sharp. It then moves behind my left eyeball, and the stabbing sensation starts. Sometimes it does not get that far and lingers around the orbital bone. Sometimes I get tinea when I experience these headaches. Sometimes it gets real painful bad. Nothing takes the pain away when it gets like this. It woke me up during my sleep a couple of weeks ago. That is why I had went to the ER. The searing pain. I tried every homeo pathic remedy and nothing seems to work.

It has been suggested to use Riddiln, lythium, Oxygen, Immetrix injectable and other things.  

Deep breathing has seemed to help in the past, but usually it takes about 15 minutes or longer for this to work. Also my left nostril flares up like I have allergies. This happens when the pain has moved into and behind my eyeball (Optic nerve?).

It seems that I have a lingering sense I am not out of this cycle activity yet, but I feel I am getting close.

I am satisfied with the diagnosis, but I am seeing my GP next week for further evaluations any suggestions when I see him?

Hi Tdow. Over on the left, click on the Oxygen info link. Print that out and take it to the dr.
Also, print this page:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

These should help get you the treatment you need.
pain free wishes, nani

Nani and Redd,

I went to my primary care doctor yesterday.

He reviewed my cat scan, did a full check up, and went through a similar checklist. He gave a me a sample of Imitrex nasal spray 20mg which I ended up using last night. It completely killed the headache. So far so good.

Thanks so much for your advice. Talk to you later....

Tom :)

Hi I am Paul. I have been a CH suffer for many years but only got diagnosed 2 weeks ago, brill now I can do somthing about it. Like many I stumbled on this ace site when searching for answers about CH.
Previously I have had cocaine sprayed up my nose and my sinuses drilled and 20 months ago on my last encounter with CH I was diagnosed with Neuralgia, prescribed tegratol and nearly died from Stephen Johnsons Syndrome, "greeeeeeeeat" but having seen so many doctors and surgeons over the past 20 or so years funnily enough it took a phone call from accident and emergency to a ward doctor who made this final doagnosis over the phone, again "greeeeeeeat", no more needles in the spine to take spinal fluid, no more crap drugs etc, it may seem silly that you can be in so much pain but feel better for the simple fact that you know what it is you are dealing with.
Thanks to all of you for welcoming all us new members to this site, its great to know that there is someone out there with more knowledge than the flipping doctors. I just need to get my wife to visit this site too, she may understand better and not get too worried when my next attack of the clusters appears.
I am in my 3rd week of the present cycle and I think the worst is over (fingers crossed), but again thanks for the welcome and for keeping a good and friendly site going.
Paul

Hello Paul

It sounds like you are on the right road now, after an all too familiar story of misdiagnosis and mistreatment.

Make sure you get the correct treatment this time (the only licensed treatments in the UK are subcutaneous sumatriptan - Imigran injections, and high flow rate 02) so you can insist on these now you have your diagnosis.

Also, we have an OUCH in the UK which is very active and has many hundreds of members (sufferers and their supporters) and a Helpline manned by knowledgeable, trained sufferers.
There is a Support Board at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE from where you can become a member and talk to and even meet other sufferers in the UK. Helpline number is 01646 651 979.

Hope to see you both over there?

Wendy the Brit

So 20mg Immetrex Nasal Injector seems to have solved the onset of the attack and has totally killed the attack after about ten to 15 minutes while it is full bore.

The bad news is, my insurance will not fill more than 12 in a 30 day period. I am in the process of getting it waved, and can only pray it gets approval.

Prevent: My MD prescirbed a beta blocker (Inderal) as I was skeptical of the effects of Topamax. It did not work of course, had about a 5 on the kip a couple days after trying it. Is there something else that works better than Topamax? I have spoken to several people who have tried Topamax and said it made them stupid.

I am three months into this cycle and have only had two days repreive.

Hello tdow, nice to meet you.
Have you tried verapamil? Its considered as front line defence against CH and is frequently started with a prednisone taper which holds attacks at bay whilst the verap kicks in. It is a blood pressure med so you will need regular ECG's whilst increasing the dose.

Pred tapers are commonly around 80mg for a week then reducing by 5mg every 3-5 days. Your doctor or neuro would obviously decide on a regime for you based on your medical history.

Verap doses vary, some people get relief at as little as 360mg, 480mg is a common dose whilst some again need to go to 960 mg per day in order to get relief. Its completely personal, we all differ and you just have to persevere until you find the dose that works for you.

Verap used in conjunction with Lithium is also an effective treatment combination.

Obviously your doctor knows your history and what options would be best suited to you but these are options which it would be well worth you discussing with him/her.

Let us know how you get on or if you have any further questions, we're always happy to help.

Have you looked into some of our self help options here such as use of ice or heat, coffee or red bull? There is a wealth of information on this site to fight CH so think of it as a treasure trove and wade right in! As I said, we'll help you all we can

Regards
Helen

wrote on Jan 22^nd, 2007 at 10:12am:

Hello tdow, nice to meet you. Have you tried verapamil? Pred tapers are commonly around 80mg for a week then reducing by 5mg every 3-5 days. Your doctor or neuro would obviously decide on a regime for you based on your medical history. Verap doses vary, some people get relief at as little as 360mg, 480mg is a common dose whilst some again need to go to 960 mg per day in order to get relief. Its completely personal, we all differ and you just have to persevere until you find the dose that works for you. Verap used in conjunction with Lithium is also an effective treatment combination. Regards Helen

Helen,

Thanks for the information. I have not gotten that far yet. I most certainly do not like these headaches. I have been misdiagnosed for the past 4-5 years and would love an immediate and permanent fix to this cluster headache problem.

The doctor does not want to treat me with BP meds for this. I have tried Ice. It does seem to calm it down during an episode but I only am able to use it during the day. When I wake up with one, I am usually full bore.

I have been two days without a epsiode, and I just got the first one prior to posting this morning. It is unusual that I would get one this early in the day. I will be wore out the rest of the day because of this.

I will continue to log my treatments success and failure.

So far: Imitrex NI 1, Inderal 0

tdow wrote on Jan 22^nd, 2007 at 10:40am:

I have noticed red bull does help, but I cannot sleep after drinking a can.

Hmmmm....let me see. Lose a couple of hours of sleep or slam my head into a wall repeatedly.....which should I choose?

If your pain is similar to most around here, there's not really a choice to be made.

I have a very low BO so verap wasn't a successful option for me as I couldn't get to a high enough dose for it to be effective (kept fainting  ::) )
There ARE other options though, keep reading on the site, there are lots of other peoples experiences and you will definitely find other options which you can take to your doctor.
Do most of your attacks occur during the day or night? Melatonin is another option for night time hits that you may want to look for posts in regard to and ignore Lithium's more common useages, it has become an effective med for CH and is well worth considering too.
Personally I find red bull and its cheaper equivalents to be the most vile revolting stuff ever to have to drink - but given how it can stop a hit in its tracks for me I have learned to have a love/hate relationship with it! I prefer strong coffee but a can of red bull is more practical to dig out of the bottom of my handbag LOL
Have a read through the meds and ch specific boards and ask all the questions you want, we all remember what its like to be new and how it can seem like information overload. Take your time, remember there are NO stupid questions if you need to know something and keep your chin up.. we'll help you through this!
PFDANS
Helen

wrote on Jan 22^nd, 2007 at 10:53am:

I have a very low BO so verap wasn't a successful option for me as I couldn't get to a high enough dose for it to be effective (kept fainting  ::) ) There ARE other options though, keep reading on the site, there are lots of other peoples experiences and you will definitely find other options which you can take to your doctor. Do most of your attacks occur during the day or night? Melatonin is another option for night time hits that you may want to look for posts in regard to and ignore Lithium's more common useages, it has become an effective med for CH and is well worth considering too. Personally I find red bull and its cheaper equivalents to be the most vile revolting stuff ever to have to drink - but given how it can stop a hit in its tracks for me I have learned to have a love/hate relationship with it! I prefer strong coffee but a can of red bull is more practical to dig out of the bottom of my handbag LOL Have a read through the meds and ch specific boards and ask all the questions you want, we all remember what its like to be new and how it can seem like information overload. Take your time, remember there are NO stupid questions if you need to know something and keep your chin up.. we'll help you through this! PFDANS Helen

Helen,

The worst is at night between 1-2 AM. I will wake up in intense pain behind my left eyeball. It completely dibilitates me.

I get them usually in the morning and in the afternoon. Usually get them after I work out. Working out reasolves the shadow, but the shadowing  always comes back.

I am not here to spill my life story, just to seek peer advice and learn more about my disorder.

Brew,

I appreciate your feedback. I will try it and let you know how it goes.

Tom

Tom alot of people find melatonin very effective for night time hits, you might want to look for posts on it on the meds board and consider whether its an option for you or not.
As you've found, excersize is a big trigger for a lot of people but then again, some people find it will abort a hit. For me thats one of the most aggravating things about CH, the way that it affects us all differently and often at opposite ends of a spectrum. It makes it harder to find options but by knowing our triggers and patterns we can put the pieces of our individual jigsaws together and aim to come up with a plan that works for us.
I don't want to pry into your life story but some basic questions will help with suggestions, just don't answer anything you don't want to!
Helen

HI,
I am new to this website and am searching for answers. I spent most of my day yesterday in the ER with horrific head pains. Starting close to the back of my neck on the right side and shooting up behind my ear. This isnt my first bout with them but it was bad enough to beg for someone to make them quit. I had these extremely bad about 10 years ago and sought a neurologist to help give me some answers. He instructed me to get rid of the stress in my life.  ;;D( I kindly told him that was illegal and that I could go to jail for that) He gave me an anti - inflammatory and told me to take ibuprofen along with it. It didnt cure them it made them more bearable so that I didnt have the desire to die. I had them perodically on and off for the last 10 years.. but never having them come so often and so extreme as they did back in the 1990's and yesterday.  The doctor at the ER told me that they sounded like cluster headaches and gave me imitrex and some lortab. I have found that the imitrex works but it takes so long for it to kick in. That the hour or two that it takes to make them stop.. is hell. I just sit and hold the back of my head and cry. My husband feels horrible and so do my kids cause they want to help. I question if it is really cluster headaches. I am not male.. and i dont see them come in cycles like most of you talk about. I just want some answers.. I want to know if any of you can give me any advice .
Look forward to hearing from you..

Hang tough do some reading here and
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
here
Check your pms...in the upper right of the screen
good luck
jb

Chris,  If it takes 2 hours for the Imitrex to take effect they must have given you the tablets.   They are useless.  Make them at least give you Imitrex nasel spray or better yet...the injectables.  You'll see results in less than 10 or mions.  Not 2 hours.

thanks t_h_b!






   Santa ;;D

djsdds wrote on Mar 29^th, 2004 at 10:20pm:

Hi! I guess I'm the newest member.  This is the greatest website I've ever seen.  When I first started getting clusters I was 19.  There were no computers or web for that matter, it was 20 years ago. I'm a dentist, and it took until I was in dental school to get a correct diagnosis.  We had a chronic pain instructer who was shocked that I was a young female with clusters! I'm so special!! So here I am now, age 38. I have 4 kids, have never had a cluster during pregnancy (no, that's not why I have 4 kids!! LOL) My youngest is 3 now.  I would get a cluster after each delivery and this time I've gone over 3 years without any!  I prayed to God they were over in my life until March 9th at 2am they hit again! I'm 20 days into it now and I think it's slowing down.  I was waking up every 30 min to suck O2.  Last night I only woke up twice! I try to avoid meds but  I'm dependent on Oxygen. O2 works well in the beginning of the cluster, and in the last weeks.  NOTHING works in the middle days or weeks.  In the past I've used an Ergotamine inhaler.  That's like snorting alcohol (which of course, I'd do if it worked).  I tried the Imitex inhaler this time which just made me sick!!  So instead, I screamed, paced, cried, rocked like a crazy person and when it seemed to be coming down, I prayed the O2 would work next time! This is like living in Hell!!

  Only IMITREX INJECTIONS work on us.    The pills and sprays are a frigging waste.   IS your doc telling you that Imitrex injections Are not for clusters?   If so, He is in the dark ages.---Danny V

And then lovingly, but FIRMLY,  tell him that women DO get cluster headaches. They used to classify everything about womens heads as migrains. As many of our beautiful ladies here will attest, CH is not an exclusively male club! (don't tell that Howell lady I admitted that)Sounds like you have a lot of reading to do, and then you have to educate your doc! Good luck and welcome.

Guiseppi

Hi nab I'm from IL also I was wondering if your husband has tried Diamond Headache Clinic I've had great sucsess with them.I'm also on Verapamil (Calan) for 14 years .it works great for me tell hubby good luck and stay pain free [smiley=laugh.gif]

DannyV wrote on Apr 18^th, 2007 at 10:28am:

Only IMITREX INJECTIONS work on us.    The pills and sprays are a frigging waste.

Speak for yourself. Lots of folks around here get relief from the nasal spray. Not quite as fast, but helpful nonetheless.

W E L C O M E ALL!!!

If you have been fortunate enough to find this board early into your diagnosis...you stumbled into a gold mine.

If it has been years of feeling crazy, isolated...(I didn't get here until thirteen years of being chronic and not knowing a soul like me...)  Those days are officially over right now.

We KNOW.  We BELIEVE you...what you have IS REAL and VERY, VERY PAINFUL and effects your entire life.

Im so glad you all made it.  It's ok.     Sherri

Hello there!!  

I am 32 years old, married w/ 3 wonderful teenagers.  My headaches began 6 years ago and I just recently got diagnosed w/ ch.  I am taking medrol, frova and limictal.  Of course, this crap isn't working.  

My boss is the one that referred me to this site, since her husband has been suffering from ch for years.  
I feel she really does understand my pain, although, I wonder how much time I really can be off of work before I get the boot.  That stresses me out as much as the headaches.  

I have taken so many medications I have forgotten half of their names.  I have had depo infusions and been placed on antidepressants.  I hate taking pills and shots suck.  Many trips to the er, make them treat you like a freaking junkie and dr's that seem to really not have a clue and use you as a test pilot for their new ideas.  

My dr has now told me to stop taking my hormone pills and wants to send me for a sleep study.  Ok fine, now am looking at making myself and my family even more miserable.  Which scares me thinking these headaches could possibly cause me to loose my job and my husband from being a menopausal, head pounding psycho bitch from hell.  I don't want that.  I just want to be normal and not stay awake for 2 days at a time to fight away the waking up w/ a pounding headache.  But as I have learned no sleep brings them on as well.

Please shed some light my way!!!!  

Hello, everyone!  Just wanted to introduce myself without creating a new thread.  I have not been diagnosed with CH yet, but am certain I will soon, as once I started doing some research on the "migraines" the doc said I have, it turns out they are not migraines at all...  I am currently seeking a doc with some CH experience, but they are hard to find...

In late November, I began getting daily headaches in the morning, usually as soon as I woke up.  They are usually on the left side of my head behind my eye, like someone is stabbing me there and twisting the knife.  My eye was also read, and I had and unusual amount of tearing and drainage from that eye/nostril.  I was treated for allergies and migraines.  (despite the lack of nausea, sensitivity to light/sound, auras, etc.  but I trust the doc, so who am I to judge?)  The treatments did not really work, and then in late January, the headaches stopped.  I was the happiest woman on earth!  

A week ago, the headaches started again.  Same symptoms.  Early in the morning, usually upon waking, though fortunately have not woken me up.  I will get about 4-5 a day, every day.  Several times I've asked my poor husband to shoot me.  Fortunately, he's not that kind of guy.  Yesterday, I began reading as much as possible about different types of headaches, and was in SHOCK after reading about CHs.  I could not believe that they existed and described my pain almost exactly.  

I would like to know if there are any sites or places where I can look for a doctor that specializes in CHs so I can avoid misdiagnosis again?  (Or, if I have misdiagnosed myself, who will be competent enough to eliminate CHs as an option if that is not really it)...  I've had the requisite MRI, etc.

Sorry to hear you had to find us.

Here is a link to a list of "sufferer recommended doctors"

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Maybe this will help.

Whether you use one of these or not it is a good idea to familiarize yuorself with the common treatments that are used for cluster headache prior to seeing the doctor. Bop around on the site and print as much as you can to toake with you to the doctor no matter what.

Scott

Thanks so much Scott!  That is so helpful!  I don't want to insult the neurologist by switching, but at the same time, I want a higher quality of care than what I got.  :(

Hi ochreluna,

Welcome to the Family!  I'm sorry you had to find us but you are in the right place.

There are some here from your area.  I'm sure one of them will be along to give you an idea of who is good in NC.  You can also use these links.

OUCH: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
The American Headache Society START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck and I hope you find some relief soon.

-Dennis-

Thanks!  (kind of)

Everything I have seen here has been very useful!  I really appreciate all the sites to find a doctor.  I'm going to talk with my doctor on Friday to discuss this and try to get a referral to one of the doctors listed on these sites to avoid the previous neurologist, if possible...   ;;D

I meant the (kind of) as in, "Thanks, but I wish none of us was here discussing this kind of horrid pain!"  :)

Hi, Ochre - I'm sorry I got to this thread a little late.

I live just outside of Greensboro - we're almost next door neighbors.  I don't know that I can be of any help to you in finding a neuro in your area, but I do know that I've got a shoulder, should you need one.

I'm here daily (at least I try), but you can PM me any time.

Sandy

Sandy,

Thanks!  That is close!  

I just went to the family doctor today, who agreed with me that my symptoms were much more like CHs than Migraines...  so I have a referral back to the same Neurologist, but with another doctor's note on my symptoms and their diagnosis.  Hopefully this will help in talking with the Neurologist.  We'll see how long it takes for them to call me for the appointment.  I had the Dr. call, because the first time I tried to make an appointment, it took 3 days for them to get back to me...  They book about 1 month out or more...  How unhelpful is that???  

I have a dilemma, and was considering starting a thread...  The hubby and I want to start trying to have children soon, but most of the meds I could take cannot be taken while pregnant.  

Are there any therapies available that are safe for pregnant women???   [smiley=huh.gif]

Hi All
New to this site and my first post, I am Episodic and the cycles were tapering off. But last winter I had my longest session yet, (had just started a new job and it wasn't working out so the CH were just icing on an already bad cake.)
I had my first cycle when I was 20 and used Tylenol till I was 40 then discovered Imitrex. But the last cycle seemed to be Imitrex resistant, so I have started the search for something that will work now.
I will be researching this site alot in the next while, it seems to be a gold mine of info...

Hey Turf, welcome to the nuthouse!!! Another one that had to wait forever to get a correct diagnosis, a little frustratiing isn't it? ;;D You haven't mentioned oxygen, it should be your FIRST line of abort. For me it will  abort most attacks in less then 10 minutes, usually closer to 6.

You also didn't mention any preventative meds. That's something you take, while you're on cycle, that will reduce both the frequency and the intensity of your attacks. I use lithium at 1200 mg a day, others use verapamil, topomax, there are many to research. Lithium was my miracle prevent as it allowed me to lead a "relatively!!! ;;D) normal life when on cycle. Welcome agaian to the board, I do hope you find some relief here.

Guiseppi

I have a script for sansert (sp?) but haven't used it before so don't know...... I am curious about the Oxygen thing, it seems to be high on many peoples list.

Yeah the diagnosis took a long time but the health care system up here does leave a bit to be desired. It took over six months to get a neurologist referral.

Hi turfman, sorry you are here. There is a ton of help and info here to help deal with the beast. Check out the o2 info to your left. IT WORKS!! :)

   Barry

Hi Turfman,

If you are willing to travel and can ask your family doctor for a referal, Dr Shapero in Markham is a very helpful doctor. The office is called: the Markham Headache and Pain Treatment Centre.
I use verapamil as a preventative and so far it is going well. I also use O2.
Good luck, from a fellow Canadian,

Leanne

I am back with a new cycle. I had the worst one ever last Friday...Felt like a electric transformer was in my head right behind my left eye.....

I had tried the riddlin factor and it broke the last cycle...

I had to stop taking it because of how much weight I lost...

So I just ate a imitrex and am ready for phaze 2 of finding a cure...

Welcome to the board, the bad news is there is still no cure. The good news is there are many options that'll help you manage these things.

You need a preventative, something you take that reduces the frequency and the intensity of the attacks, some of the more common options, verapamil, lithium and topomax. By themselves or in combo they provide relief for many.

Then an abortive strategy. DEMAND OXYGEN! It should be your first line abortive, no side effects, cheap and for me will abort in less then 10 minutes. I save imkitrex for only the rare occasion when 02 doesn't stop it.

Welcome to the board, hoping your cycle is a short one.

Guiseppi

Hi All,

This is my first post.

I first remember getting clusters around the age of 28 (about 7 years ago).  The pain usually presents itself with severe sensitivity to all external senses, particularly light and noise.  Likewise, I seem to get nausea, but still tend to attribute that to the significant mucus flow into my stomach during a cluster.  The pains usually start in late afternoon and turn on and off through the night, however todays started about 10am, signaling a particularly bad day... I went home at noon.

Of course, in my early days with this condition I kept asking doctors about it and they kept telling me it was sinus (because of the congestion and seasonality of it).  The allergy drugs never seemed to work, but was usually able to get a little relief with sudafed and laying on my side with the effected side pointing up.  This certainly was no fix, but had lessened severity.

Finally, a few months ago, I came across an article about headaches and first read about clusters.  I went to my doctor and demanded that I see a headache specialist.  After he argued that it was just a sinus headache for another 5 minutes, he ceded and gave me the referral.  Last month, I finally saw my neurologist which diagnosed cluster, and gave me imitrex 100MG tabs (samples) for arrestors and verapamil for preventative.  I have just started my last cycle a couple of days ago (just after equinox) and am very impressed with the imitrex.  I haven't seen any relief with the verapamil, but I understand that takes a little time.

I have heard a lot about O2, but am reluctant because I travel a lot and cannot imagine lugging such an item onto planes  (is this even allowed)?

A couple of questions for the crowd:

1) Do people ever go into complete remission?  Or is this likely an issue I will deal with for life?

2) I have read through many of the boards, but haven't seen anything substantive about episodic becoming chronic from prescription drug use.  If there is sound evidence, can you please share?


Here is hoping for relief for us all! :)

Howdy AVN! A couple of things.......it is hard to travel with oxygen but not impossible. And even if you just keep the 02 at home for the at home hits it's well worth the investment. Going on 30 years battling these things and it's still my first line abortive.

Verapamil takes about 2 weeks to ramp up and most people require a dose higher then docs are comfortable with. 480 a day tends to be midline with some going into the 960 mg a day range. Work with your doc as this isn't a dosage change you would undertake without his monitoring you.

I haven't seen anything posted by our resident docs and researchers that indicate prescription meds cause people to got from episodic to chronic, but many have posted that they feel imitrex injectables have extended the length of their cycles. There haven't been any studies done on that just the opinion of some who have tried it and thought their cycles went longer.

Yes sometimes they just go away. Jonny was chronic forever and woke up one day they were gone. Sailpappy is pushing a hundred years old......well maybe not but danged close...and they still haven't left him.

Welcome to the board, jump in with both feet, read everything and let us know how you progress.

Guiseppi

Thanks for the information Guiseppi.

I tried a Maxalt today since I ran out of samples on the imitrex, and to my surprise it worked as well.

I will see how my first properly medicated cycle ends out and see about what is truly necessary for me.   In the past, my cycles have only lasted 1-2 weeks, so I may not need the verapimil anyway.

-Andy (AVN)

Hi Andy,

Another trick for travel is Frovatriptan.  Helen suggested this to me.  While I haven't had the chance to try it yet it is supposed to keep the beast at bay for 12 to 20 hours while you get where your going.  You can't use it within 24 hours of another triptan (like Imitrex).

She suggested it after I posted that I ALWAYS get hit when traveling when in cycle about an hour after stepping off the plane.  You can take it twice in 24 hours.

You can work with your O2 supplier to have an e-tank or two waiting at your hotel.  Traveling with Oxygen isn't simple but can be done with a little planning.

Hope this helps and your cycle is a short one...

-Dennis-

Hello. . .

I'm new to this board and would like to introduce myself.  My name is Shannon.

I don't get all the abbreviations so please don't expect me to post them.

I have had cluster headaches for about 6 years now.  At first I thought I had an abcessed tooth but the dentist told me to see a doctor.  Saw a doctor, had an MRI ( I already have an arachnoid cyst on my brain so am used to the MRI routine). They found polyps in my nose and sinus cavities so they put me on Vicodin for the pain.

When I moved to Las Vegas I found a new doctor who told me I have Trigeminal Neuralgia.  He, too, put me on Vicodin.

It doesn't hurt to brush my teeth, or any of the other symptoms of TN (wow, I used an abbreviation!).  It wasn't until I switched doctors, and he asked the RIGHT questions, that I found out I have cluster headaches.  And have for SIX FREAKING YEARS!  I did have a "remission," as I didn't have any for over a year.  Last week, however, they came back with a vengeance, which is why I'm here.

What in the hell helps this pain??????????????????

I don't have insurance so can't go to a neuro. . .

Hello my mother-in-law told me about this site.
 My name is Chris I've had CH for over 16 years now been to doctors, used oxygen, lithium and Imitrex among others. No relief, my longest remission has been 5 months. And it has just ended. again I'm afraid to go to sleep, I finally just do it just to get it over with I know i'm just hold off the inevitable.
I like this site and I beleive you'll be hearing more of me.

                         Christopher  

How did your mother in law hear about it???? It's awesome that the word is getting out to people like yourself. Welcome to the board, here's hoping we can help. Have you read the oxygen link on the left yet? Many find oxygen failed them because of HOW it was used. Might be worth a second shot.

When you get a chance tell us what your current preventative routine is, what, if anything, you take to reduce the frequency and intensity of your attacks, and what you take when a headache starts. Maybe you can teach us something, maybe we can point you in another direction. It's what this board is really all about.

Welcome, so glad someone pointed you to us, like it or not you're family now!!! ;;D

Guiseppi

Well I try to drink alot of water, to prevent. I try not to eat peppers bell peppers those sort of vegitibles they seem to be a trigger for me. I dont have a great preventative stradigy.

 When one comes on some times i can stop it with my breathing. I take deep slow breaths in and out. I start pounding coffee if that doesnt work sometimes that well shorten them. IF one wakes me up I'm screwed I'm left pacing crawling on all fours cussing moaning trying not to slam my head into things I've done a lot of that in the early day and it does no good.

 i'll talk to my Dr. about trying O2 again, It's worth a shot. i wont let them give me narcotics they dont work anyway.

  Christopher  8)

You're 100% correct on narcotics, they are useless for the pain and pack waaaayyy  too many problems.

For 02 to really be effective, you must breathe 100% oxygen, no otside air, no re brethed air, you must use a NON RE BREATHER MASK or a DEMAND VALVE. You need a regulator that can provide up to 15 LPM or greater air flow. Most can abort in under 10 minutes using oxygen this way. I so hope it works for you.

You also might wanna look into verapamil as a prevent, either alone or in combo with lithium many have found success. If coffee helps definitely try the energy drinks that combine caffene with the taurine, many can abort using only that.

Guiseppi

I've been drinking energy drinks all day in fact I've had the shadow most of the day. And I'm just hoping it dosen't explode I'm going to the Dr. Tuesday or wed. those are my days off. i'll talk to him about the verapamil but the lithium has had adverce affects with me. oh. also I'm gonna take your advice and try the O2 again last time it was more irritating than anything but I was givin the nose tubes to use by the Dr.

         Christopher

Hi Christopher,

You should read through the Oxygen info on the OUCH-US site, print the info out and take it with you to the Dr.  If he perscribed nasal canula to you last time he'll probably need to see the research posted there to get the perscription right.  Good luck...

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-Dennis-

No one who has tried the nasal canulas has had any luck with them. They are worthless as you get too much outside air...........Please read the link on oxygen, the right rig might make all of the difference in the world. ;;D

Guiseppi

Hello my name is Christine, I am 39 years old and I live in the South of England. I was diagnosed with cluster headaches last wednesday.

On christmas day I accidentally sprayed myself in the face with perfume and a few hours later I was just sitting watching TV when I began to experience really severe pain in the roof of my mouth followed by burning in my right nostril then such severe pain behind my right eye it just crippled me.

Although the pain had taken me by surprise it was not unfamiliar to me, just this time I had no explaination for it apart from the perfume.The pain subsided after 20 /30 mins but during this time I thought my face was going to explode or at the very least I had been shot in the temple!

When the pain had gone I began to ask myself all the usual questions was it my teeth? It couldn't be I have no top teeth left! Maybe it was a blockage in my sinuses but my nose was running like a tap.

Over the next few days I experienced this maybe 5/6 times daily and by the time the New Year had arrived I knew that I needed to get to a doctor. I saw a doctor I had not seen before, and once I had explained what had happened to me I had 3 pages of paper put into my hand explaining all about cluster headaches.

Even then I could not see what had been staring me in the face for the last 21 years! An appointment was made for me on 16th January to see a specialist and I sat explaining to this guy what awful pain I have suffered with my sinuses over the years to which he responded he doubted i had ever suffered sinus pain and told me all about cluster headaches. He went on to tell me I was lucky by the time some people are diagnosed they have had all of their top teeth taken out, it was at this point I realized what had been happening to me.

I was 19 when i had my first tooth drilled, incidentally the tooth directly under my right temple and in November last year I had a orthodontic plate fitted to replace the teeth that I have had removed over the years whilst suffering such severe pain.

Once i had run out of teeth to blame the pain on, I went through every decongestant and sinus remedy I could buy although, I could never understand why nobody seemed to suffer sinus pain as badly as I did.

I have been told that I need an oxygen tank and also a nasal spray of which I don't remember the name but I am waiting for the doctor to hear from the specialist before I can have this medication.

As you can imagine I am very scared and just waiting for the pain to start, it seemed to have lessened to one bout of pain per day which has occurred late afternoon for the past 3 days but without any form of pain relief I would be interested in any suggestions.

Little Deb wrote on Feb 10^th, 2004 at 7:08pm:

I shall bump this one, cause it is good...... And say hi to everyone while I am at it!!!! Big Hugs....Little Deb ;;D

hello

not sure what i am meant to do here but trying to get someone to talk to me?
husband today been diagnosed with ch and want to know if anyone else on oramorph? :'(

Go to the "getting to know you board." Start a new post and title it, husband has CH, questions?? I have no experience with the med you listed. But many many people will respond to your post, including many who live in England! We don't tolerate anyone suffering this stuff alone. Bless your heart for being a supporter!

Guiseppi

doddy7 wrote on Feb 7^th, 2008 at 10:05am:

hello not sure what i am meant to do here but trying to get someone to talk to me? husband today been diagnosed with ch and want to know if anyone else on oramorph? :'(

   It's morphine. Make ya loads of fun at parties but not good for ch.

                           potter

                       

Thanks for the warm welcome to all newbies. I have only been a member of this site about a month and have posted a few times. Interestingly, I stumbled across this page several years ago when I was suffering from my last bout of ch, but I was at the end of my cycle and didn't join. In restrospect I wish I had, as I am a big believer in supporting others.

I suppose I have more to contribute than I realized initially, since I have been a sufferer for 32 years. I have tried most meds out there and have never been successful finding any to stop my cycles. I'm just thankful that my ch are episodic, so knowing they will ultimately end is what mostly gets me through a bout. The thought of becoming a chronic sufferer is terrifying to say the least and for those of you who fit in this category, I can only say that my prayers contintually go out for you.

Final thanks go out to DJ, the creator and webmaster of this website. You have done a wonderful thing by bringing fellow sufferers together to provide both information and support to one another. YOU ROCK!  [smiley=bow.gif]

KatzPurr wrote on Mar 25^th, 2008 at 8:08pm:

Final thanks go out to DJ, the creator and webmaster of this website. You have done a wonderful thing by bringing fellow sufferers together to provide both information and support to one another. YOU ROCK!  [smiley=bow.gif]

Excellent post KatzPurr, and well, welcome. No truer words than above.

Regards

Jon

Well the devil came back after 10yrs. I decided to quit smoking so i started taking chantix within one week the first one hit about a 6 on the kip scale. Thought maybe it would pass quickly stuck it out for 2 weeks about 3 a night all in the 5 to 6 range. I gave up went to the neurologist he gave me the script for the steroids and said to stop taking the chantix. 24 hours after stopping the chantix  and without starting the steroids the beast went away. Thought I had dodged the bullet but at 2:30am and 5:30am got smacked with a 6 and a 7 ten days since the last one. Now the dam shadow is hanging around. I guess its time to start the steroids last time i gained 20 lbs and slept an average of 4 hrs a night. Sorry this is a bit of a rant but just had to tell someone who understands.

And understand we do John!  Sorry the beast has returned to haunt your nights.  10 years was a good break.

That pred taper should be given along with a preventive like Verapamil or Lithium or ...  The idea is to arrest the beast with the steroid while the prevent gets up to a theraputic level.  That can take 10-14 days.

I'm using verapamil immediate release @ 400mg/day right now.  I'm still getting occasional hits and shadows but the frequency and intensity is way down.

Oxygen aborts fast.  Has to be 100% O2 @ 15lpm using a non-rebreather mask.  No med side effect.  It is my main abortive.  But you have to get on it fast.

If I don't get to the O2 Imitrex injections are my savior.  They've never let me down yet.

The latest in treatment strategy can be found here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here's wishing you another 10 years of PF time.  In the mean time let's see if we can't make this cycle short and as easy as possible.

-Dennis-

Hi there I just want to say hi  :)

Well Hi! back.
:D :D :D :D :D

And dang glad you found us! Start a new thread under the getting to know you thread. Let us know what you've used in the past and what's working or not working for you now. And get oxygen!!!!!

Guiseppi

Im new to this and Iv had ch for 15 years i thought i was alone or insane. Iv broke sevaral bones in my youth and had several surgerys and nothing comes close to the kind of pain from a ch I havent shed a tear in 20 years for anything when i found this site this morning I cried allday. i told my wife i would trade a broken arm for a ch any day. im so glad i found this place I need help, please forgive my grammer the beast is on his way he has been showdowing me allday, Im going to kick him in the nuts and run like hell.                                                                                                                                                                                                                        sincerly J.S.     p.s. god bless you all

wrote on Feb 10^th, 2004 at 8:10pm:

If I grind this to the top... does it mean I can say me and deb are doin the bump and grind? oh nevermind bump

*LOL!!!*

ClusterChuck wrote on Feb 11^th, 2004 at 12:35am:

Second START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  There is normally someone there after 10 pm east coast time.  If no one is there, log on, and wait.  Many of us will check there and, if no one is there we just go away, but if someone is there, we jump on in.

Um...this link doesn't work for me? Can you please email it? That would be great...it's lonely when the world is asleep except for the beast in it's cage. Thanks.

Try it with
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE should work as well
Oliver

Hey all!  I cannot TELL you how much finding your website has brought hope to me.  I plan to take the info I found here to my doctor because it explains how I feel more than I can.  Keep me in mind, I go for an MRI on Wed. :)

Hi, everybody. I'm not exactly new to this site, but it's been a long while.

I've had CH for about 23 years, long misdiagnosed like most until about 10 years ago. I'm left sided this time (as with most, with a few exceptions some years), watering eye, congested nose, weird raging diarrhea (especially because I'm almost chronically constipated), and episodic. Cycles are usually about 1 1/2 to 3 months. Last year, I had two cycles with about a month and a half break in between, ending around September. They don't follow an exact month pattern at all. They usually start with the wake up fun, and then settle out into the same time every day. This cycle (past two weeks) has been odd because I've had 1-3 in a 24 hour period, times changing...

I have a few major obstacles to work out. I don't have insurance, and won't be able to afford it right away. Even still, I live in New Orleans, so even when I was in cycle last year and had insurance, I literally could not find a neurologist who could take my appointment in under a two month time frame (that's the way it is in New Orleans post Katrina, still). I just gave up and got what I could in meds from old ER visits and GPs (general practice docs) who would listen to what I asked them for. This time, having no insurance means ER docs who are becoming more and more afraid to give you anything, especially going as far as prescribing preventatives or abortives to someone just because that's what they say is wrong. So they want to do a bunch of tests that come up clear, racking up med bills that I will never be able to pay, only to send me home with an "I'm sorry, hope you feel better."

In being diagnosed before, I at least have found one abortive med that works about 85% of the time - Zomig - but I have also learned that I can't take it as often as I have CH because it will make it and the shadows worse. All of the narcs that a few ER docs will give knock the edge off, but the last thing I want to become is a dope head. I actually had an oxygen tank last year (I requested it after giving info to a GP doc), but I didn't know I needed to use it at 15 or above and  he gave me the nose attachment...I didn't know I had to use the face mask. So oxygen only distracted me, calmed me a bit, but didn't stop anything. Now, without insurance, I'm not sure if I'll get the chance to try it the correct way now. I have no idea how much it might cost out of pocket if I can get a prescription next week, from a GP at a free clinic. I'm not very optimistic about it, because they've already mentioned a referral to a neurologist with one of those two month waiting lists.

Other than that, I've been given Prednisone and Verapamil in the past, and taken a long list of other stuff before that. To be honest, I'm not sure if I've gotten to try some of this so late in the game that the cycle just ended on its own, if any of it was prescribed correctly...I feel like in preventatives, I'm still at square one with knowing what actually might work. It's just trying to get to a doctor now, I feel so exhausted emotionally and physically it's hard to have the patience to work through the guessing game, especially when my resources and options are so limited - at least to my knowledge.

I'm trying not to get to that "hopeless place". I actually have good people in my life, but they are all new to what I'm dealing with. I am trying to begin that communication and get better at asking for help and support. Even when the darkest part of that place looms for me, it tells me just how serious CH is, because I actually have some pretty wonderful sh*t to live for. So, I'm trying to find a plan, some optimism, and open that one eye just a bit to see the light at the tunnel. I could use some friends that "get it". I'd love to get-to-know, take my mind off the gloom, get ideas, and just share. For now, I'm just waiting. Peace.

---

Hello All,

This is a 31 year old (32 in Jan) man from Egypt. I have been suffering since I was 13, but I was diagnosed properly with CH when I was 22.

I am one of the rarest sufferers I guess. Hereby I mean that the bout lasts for 3 months normally, but now it's lasting for over 4 months, making me truly afraid it might've became chronic.

Anyway, the reason I believe I am rare is that CH's bout takes its time, then switches to the correspondent side. No meds can help really, except Imigran injection, and however, dear Egypt has apparently stopped importing it since it cannot be found any where, so I am getting it from England at the moment, while resorting to the oxygen high-flow regulator I got at home, in addition to Zomig, which has proven to be not bad at all, given that it shall be taken at the very onset, 10 mgms / attack.

CH is affecting my life. I am an international lawyer famous in my field, but now my clients started to post on the internet forums about my CH to justify why do I fail to respond to many clients for a few months now. It is not only that pain that prevents me from doing so, but also the severe depression coming along with the bout, not knowing when when would this nightmare end, even temporarily. My attacks are SEVERE, they wake me up whenever I go to sleep, so I can honestly say that CH has became my Freddy Kreuger. DON'T SLEEP!!!

I live alone with my Dalmatian dog after being divorced 1 year ago, so loneliness doesn't really help with frequent and repetitive bouts of CH.

I know this place for YEARS, but I was always lurking around, reading and stuff, and I learned useful things from the old board i.e. manually injecting myself with half of the Imigran ampule, and guess what? It Works!!!

I am here just because I am GLAD to know I am not alone, and that others in the world know and understand the hell I am going through. My close friends really sympathize with me, but I do not need / want sympathy. Talking to someone who truly understands is much better for me.

For the abovementioned reasons I have taken the decision to finally register here.

Well...hi!!!

Hi my name is Nancy. This is my first post and if I sound a little desperate I'm sure you'll understand. It's 2am here, just finished my first ache of the night. Just waiting for the next one to hit. Don't have O2, hell just learned about it the last couple of days reading posts here. Have had clusters for the last 20 years, I'm 43 now. Have a Dr. appointment with a spine Doc tomorrow ( I have a bulging disc in my neck and lower back ) to o.k. me for a nerve block, but I need to make it untill then. Tried everything I know to do. Been taking aleve every 6 hours, powered down a 5 hour energy drink, used ice, even tried imagining a big hammer banging down pointy spikes with every rock, and still I'm at a 7 with a 10 coming like an out of controll steam engine.I'm one week into a 12-14 week cycle and ramping up fast. Any ideas? Thanks!
:'(

Good Morning Nancy

So sorry you found the need to join our little club but Welcome Home!!!  Also sorry there weren't other board members online to post an immediate response to your questions.

I have been dancin with the beast for over 25 years and it wasn't until I found this site about 5 years ago that found out about O2 as well.  It has been an absolute Godsend for me and has completely changed attitude towards CH.  What was once almost unbearable is now just a inconvenience in comparison!!

My immediate advice to you would be to approach that spine doc today about an O2 script while you're talkin to him bout the disc problem.  May be a long shot but all he can do is say no so I would "grovel til the cows come home".  If that doesn't work then try to get to whatever doc gave you the CH diagnosis ASAP with a printout of the O2 therapy info on the oxygen tab on the left of the page

Do you have a script for Imitrex injections?  I only use it as a last ditch effort since finding O2 but it is a great abortive for me...just expensive as hell when you have no insurance.  If you have a script but can't afford it, Glaxo-Cline has a program on their website that will allow you to get some directly from them at a drastically reduced price!!  Its call "bridge to access" if I remember correctly.

Also, if you are open to it, you might want to explore one of the "alternative meds" treatments on the clusterbusters.com site (link is at the bottom of the navigation bar on the left side of this page) as many have reported great success via that route.

Again, Wecome Home Nancy, you have arrived at a community of folks with 100's of years of collective  "clusterhead" experience who will share their experience, strength and hope with you!!

Sending our positive vibes and thoughts, and wishing for some PF time for you soon!!

Dallas Denny

Thanks for the reply Denny. Problem with getting to the Doc who first diagnosed me. Lived in Plano Tx then- now I live in the wilds of Wyoming and even trying to get into see a GP can be problematic. Most specialist are only in town once or twice a week and the next nearest town that could offer anything is well over 2 hours away. Will ask for an O2 script though and hope that works. The problem with imitrex was that it worked for the headache I had at the time, but I'd have another half an hour later, and than another one an hour after that one ended, and so on. Used the inhaler though so is the injection any better?

Hi all
From a small country town in South Australia--and yes a CH lady!  Note I did not say girl!  Have gleaned a lot of great information from your site; thank you.  Also a forum member from an Australian site. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Not a big membership as there is very little known about CH is Australia where we struggle to find a local doctor with any great depth of knowledge in this area.  My first inroad with a neurologist was not particularly satisfactory either.  I was only diagnosed about 2 years' ago and have been on a bit of a roller coaster since.  One of the biggest problems I have had is explaining the severity of the pain (I refuse to call it headache) to ER staff when requesting oxygen.  Whilst trying to maintain some composure when one wants to grind ones head into the wall does not go down well I am afraid.  At least now my local ER people have some knowledge now after a recent week's hospitalisation where they saw me in full unmedicated state.  Then their response was a little different, but they felt unable to assist as medication "not ordered".  I feel more confident now of my ability to handle myself during attacks (like clockwork on wakening, 4pm and 7pm) after receiving a bit more attention from another neurologist.  His simple message was--feel an attack coming--take Imigran/Sumatriptan, dont hesitate.  Repeat in 2 hours and take up to 6 a day.  If not managing "call me" immediately to be commenced on IV Cortisone.  So far this has not been necessary--coping on the Imigran.  There are so many differing treatments and messages; the key obviously is to find what works for you--and when it stops--to go back and get further help.  Look forward to roaming your site.
Cheers
Dusker

My first time on CH.com but not a stranger to CH.  I was diagnosed back in 2004 after I had colon surgery.  That cycle lasted 43 days with the beast kicking my but 2-3 times a day.  I was very un-educated about CH along with my doc (who is excellent and helping me now in every way).  Not knowing about CH I was taking imitrex 100mg pills 4 times a day.  That lead to the famous reboud headaches. To make a long story short, I read about using O2 and that saved me.

Now, 6 years later I am in another cycle. My CH is episodic with remission lasting unsally 18 months.  This one is bad and I am in the 23rd day with 1-2 a day and many shadows.  I did learn to stock up on imitrex statdose.  I started this cycle with 18 injections and a couple of 100mg pills (which I still have).  I have 8 left and getting worried.  My problem is I work outside of the country and in Rosario Argentina right now so getting oxygen is tough.  On March 31 I'm outta hear but you all know that is a long way away.

I am very loyal keeping my log which is an important tool for me to gauge what is coming up next. Also being a part of this family is an important step for me. I have never spoke to anyone that had CH before.  No longer alone...... My wife reads web sites relating to CH and she is getting stronger by the cycle.

So I'm going to enjoy my day and wait for the night  >:(

CD   

CD wrote on Mar 7^th, 2010 at 9:36am:

..... imitrex statdose.  ..... I have 8 left and getting worried.

Please tell me you are doubling to 16 or even tripling to 24 the amount of attack aborts you can get with those 8 stat doses...?

Here's the link just in case you haven't seen the imitrex tip that outlines how to do this:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

March 31 does sound a long way away, I'm sure, so your concern is understood.

I don't suppose they have any dive shops around there or welding supply places where could you get O2 without prescription?

Would they have any psilocybin (sub hallucinogenic doses of which are showing real promise for CH) around there or Rivea Corymbosa Seeds? You could look into that angle at clusterbusters.com if so inclined.

I've heard others here report that the mostly useless imitrex pills can have some value when taken shortly before bed - in order to be in effect when the guaranteed wake ya up night hits wanna  come along.

Others have reported that around 9 mg melatonin before bed can actually enable them to sleep thru the night (????!!!). Can't say it worked for me though.

Hang in there man - and here's very much hoping this episode will just freekin end already for you soon.

Thanks for the reply and it is great to hear from a from a friend.  I will be checking out the site you sent to stretch out the statdos.  I did find out last night that I don't need a prescription for O2.  How did this happen! Went to a local doc and he was totally against this saying it doen't work.  Instead he had a nurse give me a shot of a painkiller that barley scratched the surface, but I did sleep which is gold nowadays.  Anyhow my wife asked the nurse and she said just go to a drug store for about $50 bucks and get a supply for a month.  Sweet.

The other meds you talked about are new to me but wil look into it.  Today was shadow free and it is 9:30 PM getting close to the beast attack.  Thanks again and love this site

CD

Cool about the oxygen!!

You are probably well aware, but in case not, the psilocybin (AKA "magic mushrooms"), and even the RC seeds are illegal to ingest in many countries due to their potential for recreational abuse, so of course be careful when looking into them.

Melatonin is considered a sleeping aid nutritional supplement in the US and is sold over the counter w/out prescription at drugstores in the US, but of course I don't have a clue about Argentina.

Hey if ya got any more questions or comments, please start a new Topic in Getting to Know Ya or one of the other message board areas so we can get the max number of clusterheads responding.  8-)

I don't know if I'm doing this right but I want to let some one know I'm here.  Bless coach_bill for getting me here. My first I can remember was only about 5 years ago. Since then the longest I've gone without a hit is 3 months.  I cannot go on with much more right now but I'll be back tomorrow.  I did not not get diagnosed until Jan. 2009.  I've spent a lot of time by myself.  I only hope for acceptance to this sight, I'll be back soon.

Hi Buzz Hog
I am only new to the site as well.  Australian, and currently in the middle of a cycle causing me quite a bit of discomfort--BUT-a damn sight better than I was a couple of months ago.  It seems managing these attacks is the answer, but there seem to be so many people who are struggling to get any sort of help; especially here in Australia.  Hang in there.  Dusker

Hey Dusker and Buzz Hog (or is that Buzzer and Dusk Hog?),

It would be very cool if you could create new topics introducing yourselves here in the Getting To Know Ya forum.

If you could use some input from some folks who have compared a lot of notes and found some good solutions, that's where they'll likely see your posts, whereas this topic is a bit obscure and your posts can be easily missed. I only noticed them by chance myself.

Thank you for your advice.  I was a bit bewildered when it came to deciding where to add my "bit".  Cheers

Hi to all !  I'm also new to this sight and I can't tell you how grateful I am to all who have responded with help to my questions and offered advice.The information that is shared is here is tremendous. This curse affects us in so many ways, and only we  CH's can understand that. It takes time to sort it all out. I'm one of the lucky ones who got a quick diagnosis, 1 month into my 1st cycle. My heart goes out to all of you who have suffered with this for years, no knowing.
This week I finally got an appointment to see a nuero, next month and  I'm hopeful I will get the needed prescriptions and quickly find what will work best for me. Things are looking up. Still dealing with daily shadows, eye droop, tearing, annoying head pressure that never goes away, but I'm dealing and not crying any more and that's a "good thing". :)
God Bless
Donna Mae

I'm here for the first time and I've had CH since the age of 14 and I'm 54 now. I was diagnosed rightly in 1983 by a neurologist in Tacoma, WA who said, after I told him what I was going through, "You've got Cluster Headaches" just like that. First of all I was relieved that I wasn't dying of a brain tumor but then went through pretty much the same trials of ineffective medications that were available at the time. When Sumatriptan came along I felt some hope but it soon proved ineffective. The best response I got was from Imitrex injectables and oxygen. I loved it when they prescribed the vials of Imitrex instead of those penlets. At 3am one morning I was in the usual amount of pain and barely able to function, I ended up shooting my last injection in the air. I have to admit I felt pretty isolated and this site has offered me more comfort than I have known for a long time. After a 7 year period of remission, another cycle started last Thursday.

Hey there Randall,

Sux that ya got another cycle ramping up, but at least you're getting some nice 7 year stretches between episodes now. I can relate to that because my episodes have gradually gotten further apart as the years have rolled by.

Please check out these 3 very important updates about CH treatment (if you haven't seen them yet, I'll bet at least one of them could significantly improve you're beast killing powers):

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (this covers the NEW IMPROVED method for administering o2)


START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hello to all on the site.
First of my name is Paul from the uk, and have been suffering with ch for about 8 years now and always had this sence that i was all alone going through this 3 or 4 times a day ritual of going thru hell and although no way glad others go thru what i go thru am slightly comforted by knowledge that there are people who can relate to my problem.
  After about a year of remission there again back with a vengence with the last fortnight sleep disturbed twice a night with this beast and one in the early evening.
Im totally at a real low ebb right now especially reading stories of 20-40 year sufferers.
Im not to sure what i expect to happen thru posting this but i guess i just needed to tell someone who will understand, thanks for reading

Hi Paul and welcome to our family.  We certainly all understand what you go through.

Can you tell us what treatments you have used for the last 8 yrs?   Pure oxygen is a must.  (link to the left)

Linda

Hey Paul,

Keep reading, and I think you may be encouraged - a good number of us long time sufferers have found ways  to quash most (and for some of us luckier ones, pretty much all) of our CH attacks.

It sounds like you may be suffering un-relieved attacks and of course that is the ultimate nightmare. Starting a new topic in the Getting to Know ya forum, and posting more of your CH treatment details would be a good next step.

I predict that armed with a lot of research here, along with asking any questions, you will join the ranks of the successful beast fighters.  8-)

Thanks for your support it really is comforting as for the treatment i have received for the first 7 years i was mearly being given pill after pill which were co-codamol 500mg and diclofenac sodium enteric coated tablets 50mg.
These pills although if taken at the first signs of an attack will work maybe 1 in every 5 trys but when i awake in the night will rarely have any effect if any at all,
  Last december when i felt the shadows beginning i visited the doctors who recommended acupuncture as he believed it may have been pressure on my neck that was causing the pain i followed this thru and had some brief rest bite up until 3 weeks ago when the nightmare started again.
I'm currently awaiting for an appointment with my GP who in the past has never suggested the oxygen or somatripan methods, ill defo be inquiring about these,
sorry for going ON bit but i thought id give all the info i could

Hi everyone!
I had been suffering from cluster headaches, (not knowing that the headaches were actually called cluster headaches,) for 10 years before I finally got a diagnosis and a miracle treatment.

This could be one of the worst pain that any individual could ever suffer and I truly sympathize with all cluster sufferers as I would not wish this pain on even the worst of my enemies.

I truly hope that each and every one of you finds relief from your brain pain and I am here to answer any questions hat any of you may have.

mister.

Hi, I'm Mike and I live on the south coast in the UK, my Beasts are episodic and I am only on my second cycle with just over a year since the last one so I guess I am lucky there. My CHs didn't get diagnosed till this batch so I managed the first lot myself with mega doses of 30/500 codydramol; which did little to help. My doctor has now put me on prednisolone(2nd day today) so not sure if it will help. I didn't know this kind of site existed but my god I'm glad it does!!!!!!!

Hi to everyone! I am actually an oldy, but a newbie once again. I wasnt on the site for many years because, well its a long story. I  have had cluster headaches since 2004. Been on many many medications. I have had other diagnosis that go  along with the clusters. Right now i am here to look for any new ch medications or tricks since they are back in full force. There were many years I had them under control with lithium and lamictal and long acting opiods. I am looking for new information before I go to my new neuro next week. I live outside the atlanta, ga area. anyone feel free to pm me on any good docs.The one im going to i dont know much about.I have seen many other neuros who were supposed to be at the top of their
game, they helped some but in the end he wanted us to go our seperate ways.Any positive feedback is always welcomed!

Oxygen is taking the board by storm! Read the oxygen info link on the left, as HOW we used it has changed quite a bit. As a result, the effectiveness has gone thru the roof.

Then there are energy drinks, Rock Star, Monster, any containing caffeine and taurine. Chug one at the first sign of an attack. Many can reduce or even abort an attack that way.

If lithium starts to fail you....(Hate the sound of that STILL my prevent after a hundred years or so.. ;))...Verapamil is a very popular prevent as is topomax.

For abortives, imitrex injectables and nasal sprays seem to help many.

Sorry the beast still finds ya....he's a real butthead that way :-/

Joe

Thanks Joe. I started a prednisone pack yesterday and this morning I woke up feeling 90% better. The constant shadows and stabbing pain has already started to diminish. I have used o2 in the past. It may be time to get another tank. I will be reading through the site for any new tips.

How has the pred worked for you? Did they start any other prevent with the pred? The pred either breaks the cycle altogether, or it just keeps the beast at bay while you're on it. I'll use it occasionally on a long cycle when I'm getting my butt kicked and just need a few days to rest and regroup.

Joe

The pred pack helped through the week then they came back a few days after it ended. I went to a new neuro mainly for having a seizure with no known cause and was going to see if he would work with my pain management dr for some preventative meds. I told him that in the past I had seen this neuro that specializes in headache treatment. His name is Dr. leslie kelman. After a year with him and little help Dr Kelman told me to go to a psych doc. So when i told the new neuro that I use to see him he said "if Dr. Kelman couldn't help you neither can I" . Sucks, but I did find a neuropsychiatrist who also treats chronic pain. He started me back on Lithium, Lamictal, Cymbalta, Sumavel (is that right its the new imitrex with naproxen injections) and the duragesic patch.
Joe- aren't you on Lithium? and how much works for you. I have been up to 900mgs in the past.

Welcome Nicknack.....I see you are from the Atlanta area. We have a convention every year where a bunch of clusterheads meet called the OUCH Convention. This year it just so happens that it is in Atlanta in July.  Here is the link....check it out.

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Thanks! I will look into that.

Sorry for the delay in getting back to you I was out of town.

I'm 50, weigh about 190 pounds. I take 1200 mg a day of lithium while on cycle. It has been a Godsend for me. Unmedicated I get hit 2-3 times a day while on cycle. On lithium, I go a couple of days at a time between hits. Oxygen with a can of Red Bull beats down most of the break thru's, with an occasional imitrex shot when it  gets outta hand.

That being said there are periods of "high Cycle" where for days at a time I'll get a couple slams a day and not much works. Those are fortunately rare.

Lithium takes about 10-14 days to become effective for me. At that dose no one can tell I'm on it. You pee a lot the first week or 2, so pay attention when they tell you to increase fluid intake.

Any chance they'll give you oxygen to try?

Hope it works out as well for you.

Joe

Hi clusterhead sufferers and carers,  I am a 46yr old UK sufferer and have had this since the mid 90's but only diagnosed last year (didnt know of 'cluster headaches') My very first attack , after enduring a lumbar puncture, was mis-diagnosed as a viral infection mimicking meningitus so later attacks i'd just try as hard as it was just to 'put-up' with the pain and take painkillers with little if no effect and wait for them to disappear. Another cycle is on its way and i'm starting to feel the 'phantom-menace' as its that time of year that i start to suffer. I now take injections which eleviates the pain but i wish there were a cure.. Not looking forward to the next 6-7 weeks of pure torture. I cant believe that there are some of us that suffer this chronically how do you cope?!!!

Hullie wrote on Aug 19^th, 2010 at 2:00pm:

Hi clusterhead sufferers and carers,  I am a 46yr old UK sufferer and have had this since the mid 90's but only diagnosed last year (didnt know of 'cluster headaches') My very first attack , after enduring a lumbar puncture, was mis-diagnosed as a viral infection mimicking meningitus so later attacks i'd just try as hard as it was just to 'put-up' with the pain and take painkillers with little if no effect and wait for them to disappear. Another cycle is on its way and i'm starting to feel the 'phantom-menace' as its that time of year that i start to suffer. I now take injections which eleviates the pain but i wish there were a cure.. Not looking forward to the next 6-7 weeks of pure torture. I cant believe that there are some of us that suffer this chronically how do you cope?!!!

Oxygen will be a big part of aborting the problem.  Read the oxygen info.

                Potter

Welcome to the board, yeah, oxygen will become your new best friend. It has all but eliminated my dependence on the imtrex shots.

Also, look into preventative medications, a med you take daily while in cycle, to reduce the number and intensity of your attacks. I use lithium, verapamil and topomax are also popular prevents.

Glad you found us, you have much reading to do to get yourself educated on how to beat the beast. We haven't found a cure yet, but with  a little effort, it's manageable. ;)

Joe

Thanks for the welcome, Oxygen i'll look into that and i'll mention it to my doctor when i see him soon for more Imigran injections. You guys across the pond seem to be light years ahead of us here in the UK in combating this debilitating condition even though its estimated over 60,000 people suffer with it here in the UK.

You guys have a Doctor Matharu, in London, who is one of the trailblazers in treating CH. He spoke at our conference in Atlanta this year, a great man!

Check out   OUCH UK     Will help you a little with specifics for getting 02 etc. on your side of the pond!

Joe

Hi Everyone:) My fiance suffers from Cluster Headaches - he has done so for the last 8 years! and was only diagnosed properly last week with the 2nd neurosurgeon that he has seen. He used to get them once a year around April / May and for a few weeks - all of sudden he has them now again in August and has had them every day for the last 2 weeks which we know know means he is chronic!

We have been so frustrated and the 'Beast' is starting to take it's toll on our relationship, finances and outlook on life - we are getting married next month and this is supposed to be a happy time for us - but it's a nightmare! Poor Ash is suffering so badly and I am so frustrated that nothing seems to help him - I feel so helpless and he feels like a burden - it's terrible!

He has been on Medrol (we are in South Africa) which is the cortisone based med - it helps but he can't take it indefinitely, he has also tried Sibelium - calcium channel blocker which hasn't helped AT ALL! The only thing that does help are the Imigran injections which he has learnt to divide one injection into two to save money - problem is is that he's now getting at least 2 or three headaches a day and his poor arm is bruised and sore from injecting plus it's not good for him. The doc is now going to give him a higher dose of Medrol 16mg which he says should help wit this chronic period.

He also went to a chiro today who put those deep tissue masaage machines on him and we are going back on Mon & Fri next week for more treatments and to test over a 2 week period if it helps at all. Ash being a fireman does put alot of strain on his spine and back and the chiro will help to alleviate some pain for him we hope!!!

In any case it is wonderful to know  (and he is relieved) to know that he is not the only one and that others understand his crippling pain. Thank you all for your advice and good luck to you all - my heart bleeds for you  :-[

Will keep you posted! Gaylene & Ash - KZN - South Africa

Welcome to the board! 2 suggestions. First, and most important, read the oxygen info tab on the left. Used correctly most can quickly abort CH with no other meds. Has almost eliminated imitrex injections for me. Do read the link as if you don't use it correctly it's worthless!

The second is to look into some of the prevent meds we've been seeing success with on the board. This is a med you take daily to reduce the number and intensity of your hits. I use Lithgium at 1200 mg a day, blocks 60-70% of my hits. Verapamil is a very common prevent as is topomax.

Thanks for doing the leg work for your partner, we're damned fond of our supporters around here!

Joe

ok

Ok well it has finally come to this,hanging out on a website with other poor bastards who feel like me!(just kidding)So here"s my story and questions...
I am a 47 year old male who has been suffering from these mind killers off and on since i was 23.In my twenty's they lasted about 3 years(about 2 times a week) then around age 37 they returned(almost everyday) for about 9 months.Now they have returned about 2 months ago,they are far more painful(starts in right eye then temple,jaw,head and then into the base of my neck) and last longer and happen more then ever some times 2 a day and lasting from 1/2 an hour to 5 hours.I am currently on Midrin which doesn't help,when they happen i will take one every hour and 5 to 7 extra strength Tylenol,although no relief i guess it is better then just wishing for death and freaking the hell out of my 11 year old son.In the past i have tried oxygen(a little relief),cafergot(no relief),water therapy(no relief),stadol(some relief).*Question #1* What helps you?
When these were happening in my 30's i was also going through some bad back problems because of a bad car wreck(since then,5 spacers and a 7 inch cage)has for the most part solved the back problems).I was on 6 10mg percocets(breakthrough pain) and 2 40mg oxycontin,i would never take any extra meds when the headaches happened,mainly because i needed them for day to day relief from the back pain.*Question #2*Has anybody gotten relief from narcotics? I ask this because with a little complaining i could easily get them again because of the past back problems.There was one time(after suffering 3 hours into a ch)after probably 10 tylenol and 4 sniffs of stadol i figured i had nothing to lose.I had 3 percocets and 1 oxycotin left till the next day when i could get them refilled.Knowing i would be alright the next day with 1 percocet left,i chewed up the rest,i remember getting a little relief and falling to sleep for an hour when i awoke the pain lasted for another 2 hours!Last but not least,i don't drink alcohol(any more)little to no caffeine,i do wear glasses to read and eat the normal type of food most people eat*Question #3*anybody here ever try the diet that is modeled to your blood type(i here it could help with ch)?
Here is the weird thing,i do smoke cigarettes and i have noticed a increased desire to smoke when under attack,i can't because i am to busy holding on for dear life till the mind killer has stopped.Anybody else who smokes ever experience this feeling?

Any and all help will be greatly appreciated!
-Mark

Mark,as far as painkillersnot much help BUT \, I am a night hitter 10:30 Pm give or take 15mins,at 9:30 I would take one Vicodin and one Butal and that would help. After I found this family I have not taken a single painkiller.Melatonin has saved my ass.10mg before bed.As for the smoking,I smoke 2 packs a WEEK (light smoker) unless during an attack then I smoke one after another,heres my gig when I get an attack. Wake up 10:30 grab a Red Bull 3 smokes put on my shoes and go for a walk 45mins later back to bed sleeping like a baby till morning.I think I have it much better than most here my longest HA was 2 hours and only happened a few times in ten years.My dr told me that smoking constrics your blood vessels and for CH thats a good thing.But he does not condon smoking outside my attacks.

Welcome to the board! Very few have had success with narcotics as the mechanism of CH is just not receptive to painkillers, absent being put out with anesthesia.

Time to look at a more comprehensive approach rather then rocking back on your heels trying to fend off the hits, that sucks!

First you need to find a headache specialist neuro....even most neuros are clueless about CH. Absent that, a doctor who will work with you.

1: You need to investigate a good prevent med, a med you take daily to reduce the number and intensity of your hits. Verapamil is a common first line prevent, although we take it at higher doses then most docs are used to, some go as high as 960 mg a day to get relief. I use lithium while on cycle, 1200 mg a day, blocks about 60-70% of my hits. Topomax also has a loyal following.

Most prevents take about 10-14 days to build up in your system. Many of us do a prednisone taper, I do a 10-14 day regimen, 80 mg to zero, as a temporary block until my prevent builds up, often referred to as a transition med.

2: A decent abortive regimen. You mentioned using 02 in the past, read the oxygen info link on the left as many who have used it in the past with little or no success, have found relief when they changed HOW they used it. I can abort an attack in 6-8 minutes using 02.

Imitrex shots and nasal sprays work for many. If I'm caught away from 02 I'll do the trex injectables, but 02 is still my first line abort. Imitrex pills tend to take too long to be absorbed and don't work for most.

Energy drinks...any containing the combo of caffiene and taurine, I prefer sugar free red bull for taste. Chug one down at the first sign of a hit, many can abort or at least reduce a hit that way.

That's enough to flood your brain for now, welcome to the board, hoping we can show you some ways to relief.

Joe

New to this group/board, thanks. I have read some good stuff and have leaned a lot in the last 10 years of suffering. Caffeine is a new one to me though. I actually cut most caffeine out a year or so ago, will have to rethink that!

It has been about 2 years since my last cluster, thank goodness, but last night I woke up with a burning in my eye, took me a few minuets to realize that it could be the start... the weather has been changing here and that usually is when they start for me. I actually fear it starting so much...... blah!

I have noticed that since I first started getting CH, my head is sensitive to weather changes.... rain or temp differences can give me a regular headache starting about a day before the change???? Is that normal or something else going on?

The last few clusters I used prednisone since it seemed to help shorted the cluster. I use melatonin at night and it seems to help. Dr. prescribed Relpax, which works for relief but managing the supply is tough. Water of course and trying to stay relaxed helps.

I will do some more research on the site an read what others have posted. I just felt the need to post right away so I don't feel so alone. Talking to other I always get "oh, I get bad headaches too" which means they have no clue what a CH is about..... Thanks for listening.

Welcome to the board, glad you've checked in! Two suggestions, look into a home oxygen set up, it's cheap, convenient, FAST, has all but eliminated my use of imitrex. Then read up on Verapamil, has worked for many as an effective prevent.

And yeah, we'll never tell you to shut up, it's just a headache! ;)

Joe

Thank you for this article. That’s all I can say. You most definitely have made this post into something special. You clearly know what you are doing, you’ve covered so many bases.Thanks!

Hello everyone
                  I am new to this posting thing stuff so you'll have to forgive me if my typings off a bit. i've been reading some of the stories about CH and i was hesitant about writing this cause i've only had mine for 2 months.
       It's really nice to know that there are are people like yourselves that come together and tackle an issue such as this. A few months ago about an hour after i woke up i started getting a bad pain behind my right eye, i took some ex st tylenol and in about 2 hours it went away. Then within a week it was the same everyday only lasting longer. Now its got to the point where it wakes me up at night....everynight. Went to the hospital twice, to the optomologist twice and finally to the eurologist yesterday who told me i'm having CH. I chose HumptyDumpty because this time it doesn't seem like the kings horsemen can put me back together again...
                     Truly not meaning to sound so negative :(

Welcome to the board Humpty!

Has the neuro started you on any kind of a treatment program? Abortives like oxygen or imitrex injectables? A prevent med like Verapamil, Topomax or Lithium? Is the neuro you're working for a headache specialist neurologist? We find most garden variety neuros do not have the education or experience to effectively assist a CH'er.

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For now, read this link. Oxygen should be your first line abortive as it's fast, effective, cheap and no side effects. Glad you found us, hope we can help you.

Joe

           Hi Joe
                  the Dr has prescribed me prednisone and verapamil hydro to start. My next apt isn't for another month. Hope this works!
                  Thank you for your input

Sounds like he has a good idea of CH. It's common to start a prevent like Verapamil, along with a transitional med such as prednisone. Prednisone is fact acting where verapamil can take up to two weeks to really become effective as a prevent.

Prednisone typically provides complete relief for me, but shouldn't be taken long term. Hopefully the verapamil will kick in before the prednisone is done. What's your starting dose on the verapamil? Do consider oxygen as an abortive as no matter which med you go with, the chances of 100% relief are pretty slim. It's nice to know you always have oxygen on hand as your "ace in the hole" to smash the beast with.

joe

Hi to all here, I've been suffering from CH for the last 6 years. For the first 4 years i was getting cycles of attacks that lasted up to 3 months with attacks every nights starting about 45 minutes to an hour after a fell asleep at night, and milder attacks during the day. After many many visits to my doctor, she sent me to see a neurologist. By that time I had diagnosed myself as suffering from CH by searching through the internet. The neurologist tried a few preventatives that didn't work but eventually 2 years ago he started me on a drug for people who suffer from Epilepsy called Epilim Chrono 500 (not sure if the name of this drug is the same all over the world), this worked for a time at a dosage of 500mg/day but after 1 year the CH came back as regularly as before. He then put up the dose to 1000mg/day. Since then the cycles of attacks are more distanced and last for a maximum of 3 weeks to a month (instead of up to 3 months). The neurologist also prescribed ZOMIG for when an attack starts, this works at stopping the attack. However my doctor is quite alarmed at the fact that I NEED to take ZOMIG every night as it is not supposed to be taken for more than 1 week at a time due to the fact that it can trigger heart attacks.
I am so happy to have found this site and especially I have found the thread about the Vit D3 regimen as a preventative. I will be starting this regimen as soon as i receive the goods from U.S.A (they are half the price than in Ireland.
I wish to say a big big thank you to all the people who post on here and wish everybody well
Thierry  ;)  :)

Hey Thierry,

Éirinn go Brách...  Please let me know if you have any questions about the anti-inflammatory regimen with vitamin D3...

Take care and please keep us posted.

V/R, Batch

Hi Batch, thank you for your reply. I hope you are well.
In one of your posts somewhere in the forums (i am not allowed to put the link to it in this message for some reason)
you speak of taking Vit D3, calcium citrate and omega 3 fishoil,
then further down you give a list that includes: Magnesium, Vit K2, Vit A, Zinc and Boron.
I am wondering if you take all the supplements in the list (vit D3, calcium citrate, Fish oil, Magnesium, Vit K2, Vit A, Zinc and Boron) or do you take just the 3 supplements on the photo in your hand (vit D3, fish oil, calcium citrate?) It would make sense to me to take the Vit K2 as it breaks down the calcium build-up in the blood vessels for use in bones.
Also does either of these regimens need to be taken continuously or just for a few months?
Thanks, All the best
Thierry (I know it is not a very Irish name, I am actually French, I moved to Ireland 23 years ago)

Welcome to the board Thiery. After you have 10 posts under your belt you can start posting links. It's a defense we built in to help limit the amount of internet SPAM we get from the computer advertising!

I stay on Batch's Regimen permananently. I started it to end my longest ever cycle....8 months!!...about 3 years ago. I have been pain free for 3 years. I am NEVER going off of it! 5 pills a day....pennies a day and beasty is whupped for now.

Joe

Hi Joe, thank you for the explanation as to why I wasn't able to post the link.
May I ask you another question please, : you say you take 5 tablets/day. I presume that you don't take the Vit A, Vit K, magnesium, boron and zinc then?
Which ones do you take?
Sorry for the questions again, i'm just so curious about this as it seems to have the potential to finally deal with the beast that is ruining many aspects of my life.
Thank you

No problem keep firing the questions

Fish Oil 1200
Calcium Citrate 500
Magnesium 250 mg.
D-3 5000mg
And Kirklands Mature Vite daily vitamin(Costco Store Brand) which contains the A, Zinc, Boron, K and another 50 mg magnesium.

I take them all with dinner. Taking it with the biggest meal of the day is supposed to eb the best method, per Batch, and taking it with food negates any stomach issues for me.

joe

Hi Joe, I hope you are well. Thank you for your further info and breakdown of what you are taking as a preventative. Unfortunately i can't get the kirkland product that you are taking so i will order the supplements separately from Iherb, that's fine too. It's a pity that costco does not send their products to europe though, i'm sure they'd get a lot of business that way.
All the best and Happy St Patrick's day from Ireland  :)
God I'm glad i don't drink. The country will be covered in puke today  :o

Hey Thierry,

Citracal Plus™ has nearly the same formulation as the Kirkland brand of calcium citrate. 

I've also found that Centrum Silver, a mineral-vitamin formula for old geezers like me has most of the vitamin D3 cofactors in the right amounts but it doesn't have enough magnesium or calcium...  As magnesium is an essential cofactor, I add magnesium citrate. 

The University of Maryland Medical Center states that the three most easily absorbed magnesium forms are magnesium citrate, magnesium gluconate and magnesium lactate.

Take care,

V/R, Batch

Hello all,
I am a 41 y.o. male that has suffered with CH for 21 years.  My headaches have followed the same pattern for those 21 years. They are always on the left side.  The pain starts,  what seems like, in the middle of my eyeball.  It is slight (about a 3) but has soon as I feel the pain "move" to behind my eyeball, it increases in pain to somewhere around 7 to 9 (I have only had a "10" a few times, which is always accompanied by vomiting).  My left eye tears, my left nostril runs and a vein at my temple on the left side becomes very pronounced and palpable. About a half hour into it I start to flop sweat.  Eventually the pain spreads into my cheek and sometimes to my molars.  The pain seems to then move to the back of my head.  When the pain "moves" to the back of my head I know that I only have around 20 to 30 minutes left of the episode.  Most often they wake me up after about 2 to 3 hours after I have gone to bed, but sometimes they occur in the afternoon and early evening.  The cycle usually lasts for 2 weeks nowadays, but 20 years ago it would last for months. Some of the headaches when I started getting them would last for 6 to 8 hours. I recently had my longest pain-free spell...I went from May 2011 to March of 2013 without any headaches. I am now in the 2nd week of a cycle.  I have tried many medications, but none have eliminated the pain completely (except for a crazy experiment I tried by snorting some veterinarian grade
Torburtol, which made the pain go away completely within 5 minutes. But I do not want to do this often as it is an opiate and i do not want to cultivate a dependence), but most medications dull the pain to tolerable levels.  I am thinking I need to keep some O2 at the house, as luckily, my headaches very rarely occur at work (Thank goodness as I work in a facility that treats children for behavioral disorders, I do want to think what a CH would be like in that mayhem). I am open to any suggestions. Unfortunately I have never been able to nail down any triggers except for alcohol.
I am glad I found this site and I look forward to the dialogue.

Hi Cisco Pikes,
Welcome to the site. Sorry that you are here and to hear that you are going through a bad patch after such a long break, you must have been in heaven for all the CH free time.
I am also new the the site. I have only tried O2 at very low level when i was given it in hospital during a very bad few attacks. The neurologist would not up the O2 levels despite my asking for it. I currently use a prescribed Zolmitriptan called Zomig when an attack starts, the sooner in the attack i take it, the sooner the pain goes away, it works but does have side effects, including a very rare chance of getting a heart attack!!!. You might have seen on this site a post by someone called Batch, he has come up with a regimen of Vit D3, Calcium citrate and fish oil + other supplements that helps the absorption of Vit D3. there has been a survey done of people on this regimen and the results show that 80% of people taking these supplments got pain free and remain free as long as they take it (some for as long as the last 3 years. I have not started this regimen yet but intend doing so very soon (I am just waiting for the supplements to be delivered from a site called iherb.com to me in Ireland, they are half the price on i herb). I today talked to my doctor about this regimen and brought her a print out of Batch's post. She gave it the green light and admired Batch' s ideas and research.
Below is the link to batch's regimen on this site, i highly recommend that you read through it. it has been recommended to me by many members of this site that I get on to the regimen as soon as possible.

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Wishing you all the best.
Thierry   :)

Hello Everyone, I am new to this site. I can't believe there are so many of you guys out there! I have always felt on my own! Wherever I try to explain my clusters to anyone else they always say "yeah I get really bad headaches sometimes too" but I know from reading other posts you guys really do know what I go through. I have been suffering from CH for about 12 yrs. I was misdiagnosed for the first 10 yrs with sinus headaches, migraines, stress etc... I was 16 when they started and I thought I was literally going to die from the pain, I still do sometimes. then I thought I was just insane bc they went away and I was fine. I was put on a lot of different meds that did not help the headaches at all. Every time they went away I thought they were gone for good, but they always come back at some point! Luckily during my last cycle I found my savior, a neurologist who diagnosed me with CH. He put me on verapamil and oxygen. The oxygen has been very effective for me if I can get to it fast enough. I honestly don't know how I made it without it before! I didn't have any CH for a 18 months, completely back to normal, then one hit me 2 weeks ago. I couldn't even believe it was happening and prayed it was just a fluke. Then a few days later 3 in one night, then 6 in a night and a few in the morning and before I went to bed. Now I am back in the hell that I hoped was gone forever. I am currently getting 2-3 while I am awake and 3-6 that wake me in my sleep. Thank God I had oxygen leftover from my last cycle, but sometimes I wake up too far in and it doesn't help. I am only getting a hr or so of actual sleep at night and now feel like I am going insane from fear of attacks and not sleeping. I am so glad I found this site. I can definitely relate to a lot of the stories I've read so far and they make me cry bc I know exactly what you are going through!      

Hello everyone.  I'm new to the site and thought I'd introduce myself. 

I would like to say I used to have cluster headaches all the time.  So bad, in fact, they'd knock me off my feet at times. 

However, I found getting a divorse really helped.  A lot less stress (I found mine increased with stress). 

Then, I also had 2 neck fusions of my c4-c5 and c6-c7.  After the fusions they all but vanished.  I still get them all the time.  However, now they no longer feel like a spike rammed through my eye to the back of my skull.  Instead they feel like little needle.  Almost enjoyable to be honest with you.....compared to the previous.

I also found the more Garlic I had in my diet the less frequesnt the headaches.  Maybe that was it.  Mt ex hated me cooking with Garlic.  Hmmmmmmm.....

Anyhow, just thought I'd share.  Nice to be here.

Hi Everyone!  Thought it was about time I came over here to introduce myself.  These headaches are making it hard to process at times so excuse my slowness and lack of words at times, my brain processes are different lately.

Anyways, I've recently just started getting my cluster headaches.  Starting around 4 weeks ago and only really remembering my 10+ pain episodes; 3 that have woken me up and 4 during the day, 2 in the afternoon and 2 in the morning.  I am not sure what is going on and if I am having multiple headaches.  But, I am getting them checked out with my doctor and she WILL be sending me to a headache specialist.  Currently the abortive TRIPTAN family tablets don't work for me and I have not tried the spray or injects but Dilaudids work as a last resort abortive.  And, my preventive is Topamax 25mg taken nightly.  Yesterday, May 31 I started 10,000 IU D3 regiment although 4+ years I've taken 5,000 IU D3 as I have Celiac Disease as well.  So hoping to get some relief soon.

Not sure if my Tuesday morning trip to the ER where I got a tablet of Prednisone helped or not but I have not had a 10+ pain Ice pick episode since then.  Thank god.  Although, with my daily headaches it feels like one of them could change at any time to the dreaded Ice Pick, they haven't yet and one hasn't woken me up since last Monday.  Hoping it stays that way!

Take care all.  And hope we all find our relief ;)

Hello to all my CH friends. This is my first time to post on this site. I live in Nashville, Tn. I've been dealing with Cluster Headaches since 2007. They started that year in July and lasted about 8-9 weeks. I took loads of Advil, my headaches would usually last 45 minutes. Went to emergency room 2 or 3 times, mri's, you name it, everyone was clueless. I really thought I must have had a tumor or something that was going to end my life simply because the pain was just that bad. The beast leaves me until 2010 in August. The very same horrific headaches. Now I'm not just dealing with pain, I'm completely depressed. Family gets really involved this time, I visit a Neurologist, and he described everything that I've been dealing with to a tee. He gave me just loads of prednisone, verapamil & a nose spray called Migranol-(mostly ineffective). Just knowing what was causing the pain was unbelievably relieving.
Fast forward to 2013, and this round started the second week of June. This time, after being prescribed all of the prednisone and verapamil, he gave me Imitrex too and that has helped a little more than the migranol. I'm in my 8th week of CH and am expecting them to end soon. Having 2 or 3 a day now and it's getting very old. My wife showed me this web site and I instantly loved it. I look forward to getting some advice from my new friends. Sorry for the long post, just excited to know there are other people that know what this feels like.

Welcome to the board Colin. Your story is all too familiar, over the counter meds that never help, sleepless nights, desperation, the good news is you're home now! You need an organized approach to managing CH so it don’t manage your life. I use a 3 pronged approach, many use a similar approach.

But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

[i]As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days[/i]

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, looks like that's what your neuro is starting with. We use it at doses much higher then  most docs are comfy with, some go as high as 960 mg a day to get relief. Topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. I assume that's how he has you taking the pred, as a short taper while the verapamil works up in your system?

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


Have you tried energy drinks yet? Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Hello all.first timer here.recently been diagnosed after being treated for sinusitis for five years.taking imitrex oral with prednisone.might start verapimil tommorow hopefully pending my blood test.was all excited about it on Friday when doc said my ECG was a little off.its been a relief to finally find a place where I can research,compare war wounds and learn how to cope with this.i plan on showing my doc the d-3 info on Thursday but my potassium levels are already high so I don't know what he will say.this is my first cluster period in the summer.always came in the early winter.2 years of that,year and a half of remission and then for my daughters 4th birthday this June she got a bike and I got a new cycle too! Is it common for them to change times of year like that?anyway been almost 2 months now.when I first started getting them the doctor would give me antibiotics and Vicodin and in a month they would be gone.i could see why she thought sinusitis.the next year it didn't work.she gave me amytriptoline(sp?)which didnt work and gave me dreams that would make a clockwork orange a kids cartoon and referred me to the only neuro in the area here(which is extremely rural and densely populated.)well he is a fine doctor,very renown throughout the state and stays booked up about three months behind all the time.he also makes Hugh Laurie's House like a kid from the Mickey Mouse club.by the time my appointment rolled around I had been in remission for three months.not knowing what I was dealing with he simply called in some nasal spray for migraines and sent me on my way.do not pass go,I'll collect your 200 hundred dollars.gave that stuff a shot in June.just made my nose on fire to go along with the gunshot to the head I was having.my wife diagnosed my clusters,made me an appointment with a new young PA who concurred with her and here I sit.hope this cycle ends soon.anyway,thanks for letting me vent.

Looks like I've found the spot. Very grateful for this site. At risk of being fng, here's my story. toothache, tmj syndrome, nerve damage? None of these things fit as complete as CH. I'm on my way to becoming a massage therapist, finished school and just have to take test....But how, not like this. It's only been three months. first once a night four times a week. got tooth pulled been doing stretches and massage ... no absolute help, some relief and preventative maintenance, but I'm up to 2-4 "flare-up's" a night. (sometimes days too). I do not  have money for doctors, have been to the er twice.(lot of good they did). Just glad I'm not alone.  my heart goes out to all that suffer, my gratitude for all the poor souls that have been stuck in this hell, thank you for that gental dim light of hope. 

Hello all, newbie to the forum, oldie to the beast relationship.
What a great forum, don't believe this was around back in the day. Can not express how thankful I and everyone should be to whom ever started this.

Quick history. 53 years old, first headaches age 20 lasted until 48, reappeared last month after 5 year relief. Diagnosed around age 25 with classic clusters from Joel Saper at the Michigan Head and Neurological Institute in Ann Arbor. Currently on same meds as before, Prednisone and Verapamil. Hoping to get O2 soon.

Couple observations from my experience before.
Around age 30 had a max level episode, wanting to die at home, drove down dirt roads with one eye partially open. Saw stop sign at last second, went through intersection, huge adrenaline rush, level went from max to zero immediately. To bad medical field can't put that together to figure out the chemical imbalance.
Prednisone seems to be a pause button for me, after the burst the beast is still there. Burst is low now (10 mg), I wake up throughout the night with aches.

Questions,
The other night took sudafed and no aches. Anyone else do this? Still feel pressure but not coming through. Excedren did not allow this.

Has anyone had an absence for years then return?
Is this just a one time fond farewell or another long term relationship?
I'm to old to go through this again, don't know if I can make it or put my wife through it again.

My heart bleeds for all of us that need this site.
But love to all that are participating.
Thank you

Hi and welcome

For your meds, verapamil can be pretty effective as a preventive, however what dose are you on? A dose of 360-480mg a day will help many, but some people go to around 1000 to get relief. It is common for many doctors to be reluctant to prescribe higher doses.

For prednisione this is normally used as a short term preventive whilst something like verapamil is started and it takes about a week or so to build up to an effective dose. This is a taper dose, so it starts high, around 80mg for a few days and then tapers off to nothing over 7-10 days. Staying on prednisione long term can be pretty bad for your health, doing damage to various parts of your body, hence the short term use only.

Sudafed isn't something that is normally associated with helping with CH, so it is likely to be just a coincidence that you had not CH pain that night.

Pain killers don't tend to touch the pain of any CH other than possibly really mild ones, which is why people don't suggest things like exedrin or even narcotic pain killers.

Have you got anything to abort a CH when it arrives? This makes a huge difference to the impact of CH.

Oxygen is one amazing way to kill CHs. Read up about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE plus START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Keep reading and ask all the questions you can think of.

Thanks Mike
I am on 360 of Verapamil. Is there side effects with high doses long term. Am willing to try if it works, seemed to get constipated when increasing it from180 to 360.
Pred burst only started at 40mg, decreasing 10 every 5 days. Went thru 3 bursts already. Long cycle this time, already 2 months in. Again seems like pred is a pause button.
Going to try to get O2, used it years ago. Do you find this helps break the cycle quicker?

Hey Bigbird,

Welcome to the message board....I am also pretty new to the board (not new to the headaches though).  Everyone on this board has been very helpful to me.  I see you asked if oxygen will break your cycle quicker?  It may not break the cycle but it does abort the Attacks like no other thing.  Oxygen has been the best thing for me to help with the painful attacks.  Normally within ten minutes you can abort a headache with oxygen.  The only problem I have with oxygen is keeping enough of it on hand.  When you get the your oxygen it is a good idea to get the M tanks for your home and some smaller e tanks for travel.  I personally like to have a full tank on hand at all times.  I guess what I am saying is take as many tanks as the oxygen company will allow you to have. Hope you feel better soon and I hope this oxygen advise helps.  I think once you get your oxygen life will be a lot better.

Thanks Metro
Really gotta get some O2, I agree, it worked well with my prior episodes.
Have you or anyone had any luck in finding a way to sleep through the night without an episode?

Big Bird,
To answer your question about sleep...I have not slept in nine weeks.  I get hit about every hour that I try to sleep.  The Oxygen allows me to abort the hits in 10 to 15 minutes,  then back to sleep for another hour. These headaches do not want us to sleep.  I wish I had better news for you.

No miracles yet, shoot.
How do we all make it. My heart really aches for all of us. It's torture.
I feel for my wife, she will wake when they get to level 7's and above to message my neck. Gone as far as to tell her to find someone else, but God knows, I wouldn't be here without her.

Hoping everyone has someone to get through these.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - this has some good info about using verapamil.

The constipation is a very common side effect (I joke the tablets are made from concrete dust), make sure you have a good diet and enough fluids. I found that after a few months my body got used to it and adjusted.

The 40mg starting dose it a bit low for a prednisione taper which frequently starts at 60 or 80mg for 3 days, then drops by 10mg a day. Just make sure that you don't use prednisione too often over short periods of time as it can be pretty brutal on your body (Google will find lots on this).

O2 doesn't break a cycle, but it does kill off individual CHs pretty quick.

Hi all, I'm 40 and on week 18 after being diagnosed. My CH presents like a stroke and after spending a few days in hospital suspected of having a stoke ...CT and MRI's later I was told By my neurologist i had CH. Knowing nothing about this condition both my wife and I have had a steep learning curve. I have an almost constant pain in my left temple and 'Mr Pushy' behind my left eye. The left side of my face, eye and mouth is in an almost constant state of drop and looks worse when the pain increases.. My left arm also becomes numb and lazy. I'm on amitriptyline at night although I've just been switched to verapamil and I use sumatriptan injections and O2. The injections are a god send and I carry one everywhere. What I am finding hard is the almost constant headache which switches into a full attack mostly at night during late evening or at 2 am. I'm hoping my remission comes soon but at the moment it looks slim. My constant headache was not a feature until about 2 months ago. I've since been told that I may be a chronic and neuro is exploring a longer term plan for me....My wife is a big support and understands and gets me... I'm a very lucky man... Recently I am getting bad nausea with the pain... However I've just spent the last 3 days relatively pain free even in my temple...felling great until last night when it returned with a vengeance... Rocking like a crazy man rubbing my left temple and crying from one eye until the release and feeling of exhaustion when it ends only to repeat itself a few hours later....I hate this thing with a vengeance ....the beast is officially off my Christmas card list...I'm comforted to see so many on this site who replicate what we are all going through and I'm glad I found this site and as my wife has said " at least your not alone" Well that's me and I wish you all well PF
Dave
UK

Hi Dave and welcome

You're not alone by a long way with over 11,000 people on the forum and no doubt many more who just read without posting. And since everyone here either had CH or supports someone with it, we all very much understand what you're going through.

Since you're in the UK, there is a UK based forum that you can also look into - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It will have some UK specialist knowledge that we don't have here plus there is a phone helpline too.

Verapamil for most people will be a much better preventive than amitriptyline. What dose are you on? We find most people get relief at 360-480mg a day although some need to go to around 1000mg.

Do read up about how many of us are using vitamin D3 to go pain free. I've been CH free for well over a year and it has helped over 80% of people who have tried it.

The background headache sounds like what we refer to as shadows. These are "just" low level CHs that will normally respond to CH abortives, like oxygen or even caffeine / energy drinks.

And you're lucky to have a wondeful supporter. They really can make a huge difference in how we handle things. Ask her to also look in here as there are many supporters here who can share tips on how to deal with us.

How are you using oxygen? There is a lot of info at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Start reading like mad and you'll be a CH expert in no time. Plus ask all the questions you can think of.

Welcome to the board! I'll echo what Mike said, you'll learn that knowledge is your best ally against the beast. The D-3 regimen he speaks of has had me pain free for over 3 years after 30 plus years of episodic:

Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

Also take a look at our sister board:

Clusterbusters.com

Alternative, non mainstream treatments to address cluster headaches. They turn out some pretty impressive success stories there. The best new is you're not alone anymore.

Joe

Mike, joe
Thanks so much for the tips. The 'shadow' CH make sense and at least I have a name for them now. I'm on a very low dose of the verapamil 120 a day until I see my doc this week who wants to check my ECG before he cranks it up and tapers me of the amitriptyline. I have two O2 tanks at home being monitored by the O2 clinical team at my local hospital. I find the taking it when I have a bad episode will abort it after 20 minutes but it is by no means enough to keep it at bay for a long period.
I will certainly be getting some vitamins as I will try anything at the moment to get my life back on track.
Thanks again guys
Dave uk

Dave, if you have trouble with the headaches coming back quickly after you stop the oxygen:

1: Try drinking an energy drink while you abort with the oxygen. I use a Sugar Free Red Bull, they all taste like piss to me but the red bull seem the least offensive! Any containing caffeine and taurine will do the trick. It pushes the come back attack several hours down the road for me.

2: It didn't work for me, but some people have had luck with staying on the oxygen another 5-10 minutes after the attack is aborted to prevent the come backer.

Joe

Dave - read up how we use oxygen at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

This approach should help get the time to abort down from 20 minutes. Using 25lpm and a non-rebreather mask I can kill mine off in less than 5 minutes.

When I get a high kipp CH, I'll grab a Red Bull once  I've killed off the CH. This helps prevent it returning plus I'm sure I also benefit from it in recovering from a nasty CH. Still no real idea what it tastes like as I just gulp it down and my mind is pretty much not remotely concentrating on the taste.

As you mentioned, 120mg of verapamil is a pretty low dose. When you increase it, working with your doctor, expect to wait 7-10 days before a dose change is effective, so don't change it too rapidly as you'll have no idea what dose really is effective. Lots get relief at 360-480mg a day, but some go to 1000mg a day.

Guys

Once again thanks for the great tips. For reasons unknown my episodes seem to have settled into shadows during the day to almost clockwork attacks In the evening. The 1-2am attacks are waking me up more and more over the past few months. I know that the pattern can take some months to settle.. But I am truly tired now...and the night attacks are just leaving me feeling abit crappy during the day as a result ( I say abit...understatement) and this just is not fair on my poor wife.

So I have a question ...

I'm on week 19 and was wondering what the chances are that I may slip into remission, what are your experiences regarding this? I am new to this so please excuse the questions if I've missed the obvious answer.

Sadly that's very personal from CH'er to Ch'er. While you may eventually slip into easily identifiable cycles, you may also stay all over the map with it. Only time will tell. Sorry, I'm sure that's not very helpful :-/

For the night time terrors, have you tried melatonin yet? It's an over the counter sleep aid. There was a thread awhile back that went into the differences between types of melatonin. Read the side of the box to make sure you get the good stuff.

It was generally agreed that the "good stuff" is

n-Acetyl-5-Methoxytryptamine.

Start with 9 mg. about 30 minutes before bedtime, some eventually go as high as 18 to get relief. It takes some trial and error.

Some people take a combo of both the immediate release (to get to sleep right away) and the time-release (to stay asleep). So you'd split whatever dose you end up with in half, take half standard, half extended release.

Joe

Thanks Joe... IM seeing my doc tomorrow re an ECG and upping my verapamil ... I appreciate the advice and help you guys put in

Cheers

Dave
UK

Well hello there! I'm 26th, originally from Venezuela, I got diagnosed cluster headaches roughly by the age of 19 and since then it has been a living hell twice a year. I get them right between the time changes of daylight saving time, and as most of you can imagine, right now I'm going through it. I've been lurking this website for a while, but I thought it was time already for me to join. Aditional info would be that I'm an engineer student. EE, love history, geopolitics, math (really?) and my girlfriend. Hope you all feel better.

Nothing wrong with lurking and learning warrior. ;) glad you decided to jump in. Spring and fall episodic here too. Used to just dread the changing of the seasons. This board changed all of that for me, hoping it does the same for you.

Joe

Hello, my name is Jaymie. I haven't been suffering from clusters too long though it feels like a lifetime already. They started last spring, I had been 5 years seizure free and was working a construction day job, standing on a ladder sanding a pergola above my head. Out of nowhere I had a tonic clonic right there. I droped the running power sander on my face and fell of the second step of the ladder on my head, sucsessfully damaging my hypothalamus. This both caused cluster headaches and utterly screwed up my internal thermostat.
Living in the northern capital of British Colombia we only have 2 neurologists. One isn't accepting patients and the other yelled at me when I suggested all of the symptoms match clusters and are exponentially worse than a migrain. "GIRLS DON'T GET CLUSTERS!" so I printed off a few custom boble head action figures for some metal heads and bought a ticket to Vancouver. Got a diagnosis what felt like instantly.
Finding treatment that does not trigger tonic clonic convulsions is overwhelming. I'll be asking for oxygen Monday and I'm about halfway through soldering a bunch of red LED's into a mask.
The following trigger seizures:
-pain killers
-muscle relaxants
-sedatives
-most of the contents of energy drinks
-fast food
-hormones
-steroids
-Alcohol
-many chemicals
I also have a cyborg bladder so water treatment is a no go.
Not even a year ago I was a construction worker,  a band manager & an alternative model.  Now I'm just rugburn and facial scars.

---

Hi Jaymie and welcome

It looks like you've found a neuro to avoid with his (or her) diagnostic skills being hindered by a total lack of understanding that women get CH too even though guys get them more often. At least you found a good one in Vancouver and well done in taking the initiative in doing that too.

You'll love oxygen. I can kill off mine in about 5 minutes using 25lpm and a non-rebreather mask. You can read up how we use it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

I'm a bit confused as to how you can make a mask out of LEDs. Care you enlighten us with your handiwork?

With your other medical issues it looks like many of the standard CH medications might cause issues, but do ask your neuro about verapamil or lithium as a preventive. Also do look at how many of us are finding success with vitamin D3. Again check it out with your neuro too.

Thanks for getting back to me so quickly.  Ill ask about those options too.:)
As luck would have it soldering an LED is one of the easiest electronic skillets I've picked up.
sew the outer surface of the mask, followed by an appropriate insulation layer and then your wiring. I'm particularly fond of arduio I used them on both the 3D printers we built and nearly used one of their new micro-processors but chose a raspberry pi to run it as it's really quite ideal for clothing based electronics.  After soldering all the red LED's on measure out your placement for them on the inner fabric, punch out the holes and sew it in place.
...at least this is the plan for the first attempt.  I'm only about 65% done now. Designs generally change through trial and error.

Welcome to the board Jaymie, sounds like you have one hell of a full plate there. :-/ Do talk to the neuro about the D-3 regimen, it's had me pain free 3.5 years after well over 30 years of episodic CH. This is the link with the info:

Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck!

Joe

I tried to get a prescription to O2 but was thwarted by the common stupidity of my province.  In British Columbia the one and only way you can get an in home O2 prescription is if your blood tests positive for COPD. I had been so amped for relief for the first time I decided to the hospital,  if every option other than O2 triggers seizures my only other option is just spend 20min every 12h between a 7&10 on the kip scale.
Just before they finished reading thIs sites lliterature on the cluster headache O2 package it hit full force for everyone in the er to witness in all it's banchie like headbanging glory. They got oxygen on me in about a minute and in about 5 I was seeing the final traces of the shadow behind my eye. The doctors didn't fully understand but they seem committed to finding a way to getting me oxygen despite not having copd. Theres several doctors meeting right now trying to find a loophole for me. ♡

That's great news Jaymie, I hope they work very very hard at getting O2 for you.
All the best
:)

Hey Jaymie,

Good on you for learning the ER docs about the use of oxygen therapy as an abortive for cluster headache...

Print out the attached file and take it to your doctors or email it to them.

It's the NHS Home Oxygen Order Form (HOOF) used in the UK and it has the rationale for using oxygen therapy at 15 liters/minute as a cluster headache abortive.

You can also print out the following link and take it to your docs... or email it to them...

This is the European Federation of Neurological Society's standard of care recommended treatments for cluster headache and other trigeminal autonomic chephalalgias.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I realize Canada isn't in the EU and it's no longer under the rule of the UK...  That said, oxygen therapy is recognized all over the world as an effective abortive of choice in aborting CH...

Take care and please keep us posted.

V/R, Batch

---

thierry wrote on Feb 4^th, 2014 at 4:14pm:

That's great news Jaymie, I hope they work very very hard at getting O2 for you.

Totally agree about oxygen being a great option to get.

What quite a few people have done if they are unable to get oxygen via the medical system is to use welding oxygen instead to successfully abort their CHs.

After a great deal of red tape, confusion between healthcare professionals and an out of pocket cost that was sick.... I got the O2 and I can refill it with welding O2 now that I'm set up with the right to buy oxygen related medical supplies like non rebreather masks and regulators in bc. :)
I've used it for 3 of my ch's now and they peaked around 3 or 4 on the kips scale and only took about 4min to get rid of. Down from the last week's ch's mostly over 40min and all 9'. The happy meter is bubbling over.

Jaymie wrote on Feb 8^th, 2014 at 12:46pm:

After a great deal of red tape, confusion between healthcare professionals and an out of pocket cost that was sick.... I got the O2 and I can refill it with welding O2 now that I'm set up with the right to buy oxygen related medical supplies like non rebreather masks and regulators in bc. :) I've used it for 3 of my ch's now and they peaked around 3 or 4 on the kips scale and only took about 4min to get rid of. Down from the last week's ch's mostly over 40min and all 9'. The happy meter is bubbling over.

  No you can't refill a medical grade cylinder with welders oxygen.

                       Potter

Jaymie wrote on Feb 8^th, 2014 at 12:46pm:

After a great deal of red tape, confusion between healthcare professionals and an out of pocket cost that was sick.... I got the O2 and I can refill it with welding O2 now that I'm set up with the right to buy oxygen related medical supplies like non rebreather masks and regulators in bc. :) I've used it for 3 of my ch's now and they peaked around 3 or 4 on the kips scale and only took about 4min to get rid of. Down from the last week's ch's mostly over 40min and all 9'. The happy meter is bubbling over.

Wonderful news that you've now got oxygen. It is a real life changing step.

Now here is to hoping that you can get a good preventive sorted out that works for you with the result that your oxygen kits gathers dust.

Potter, I would love to know the science behind why I can't use welding O2. I'm happy to learn new things and accept new ways of thinking.  I'm a maker and "can't" is a dirty word so to acept a can't I need logic and science to to explain why. I have been given a good deal of data to explain the opposition of "can't" if you can disprove it I'm sure many of us would be in your debt.
-Mike, thank you. I got more sound information and support from you than my GP. You rock!

I misunderstood your original post and thought you had a script for o2.
   Welding o2 rocks.

               Potter

Misunderstandings are one of those hidden treasures that can inspire and motivate.  No hard feelings?

Jaymie that's great news, oxygen was a real game changer for me too. Several members, myself included, find that drinking an energy drink WHILE aborting with the 02 both speeds the abort and helps push off the come backer attacks. And good for you, being your own best advocate and pushing until you got what you needed! [smiley=thumb.gif]

Joe

Thanks for all the encouragement. I'm glad the energy drinks help so many of you. It's going to be another one of those things much like most of the prevention methods or nasal spray or pain killers,  muscle relaxant, sedetives, fast food, hormonal influxes, half the prescriptions I've tried... unfortunately anything my body doesn't like -> seizure.
I've got to be rather cautious about what I take in. In the long run though I think it's more beneficial than not. Keeps me eating healthy,  has prevented a few prescriptions that later turned out to be dangerous...and I'm babbling. ..sorry been a shut in afraid of a client whitenessing a ch. No more thogh

Hi everyone,
1st post so please be gentle !
My story is very similar to many others on the site.I am from Perth Western Australia and I have wandered around in the wilderness for many years having no idea what was going on. Headaches that come at the same every day and the same time every year ! must be going crazy.
My low point or (hall of fame moment) came a couple of years ago as I knelt before my wife begging her to help to stop the pain. She was at the time dealing with the horrendous side effects of aggressive chemotherapy and her own nightmare journey for breast cancer. It was not a high point in my life and shows how much this condition can strip your self respect, any semblance of logic and leaves your ego decimated.
But believe or not I decided to post because I am one of those rare good luck stories (don't worry I'm not getting cocky as this is an ongoing journey)
i am the other side of 50 and have suffered from tension headaches, migraines and so now I've found out cluster headaches for most of my life. It was only January this year I put all the pieces together (with the help of my wife) and was subsequently diagnosed with episodic clusters. The reason it took so long to pick it up was the cycles were quite irregular in timing and length. My last cycle was 2 years ago and was mostly night time visits and late afternoon, highest was kip 7-8. This year however they were, at the beginning late afternoon and evening with no wake ups - go figure. As soon as I got used to the routine they went haywire in frequency and intensity kip 9 were frequent and I'm sure there was a 10 in there somewhere.
Being a typical male I toughed it out until my adorable wife and rock googled different headache types and bingo cluster headaches become a frequently used word. If it wasn't for her I would still be suffering so now I owe her two lifetimes. Clusters ticked every box in what was happening but unfortunately I was not hopeful of treatment as I had read many threads about the difficulty of diagnosis by well meaning but ignorant medical professionals. I made the appointment with the GP purely with the view of getting a referral to neurologist. 10 minutes before my appointment I got a kip 6 which turned out to be the best thing that ever happened. My GP (who also incidentally saved my wife's life) diagnosed with 30 seconds and had me on oxygen (bye bye beast). He then put me on a Prednisone taper starting at 75mg/day along with indomethican. He was an older doctor who had fortunately worked for a neurologist and had seen clusters first hand. The attacks stopped immediately except for the 4th day. I was late taking the meds and got hit at 7 in the morning out of nowhere with kip 5. It also happened to be my beautiful wives 50th birthday and she was having her 6 monthly ct scan at 8.30. This beast can be inconvenient at times. She drove, I sat in the drivers side with icepacks and fortunately it was gone by the time we arrived (all went well).
That was my last attack ( 3 weeks ago) I came off the prednisone and indo and went on verapamil (180mg/day) I thought was low but so far so good. A bit of a rough tapering and waiting for the verapamil to kick in but all good now. Suffered from some very heavy shadowing and about 10 icepicks a day but no attacks and these have diminished where as I am in that limbo time of "is it the drugs or is my cycle finished ?" Time will tell.
I like many can't thank the community of cluster heads enough. I was one of those people you helped without you even knowing. I was able to go to the Docs armed with all the information he needed and actually understood him due to the high quality of information here. I have read so many horror stories and consider myself to be extremely lucky as I would say I am a mild sufferer (bad enough !) but I have a doctor on the same side who actually understands, an awesome wife who had the strength not to break down when she saw me in pain, a boss and workplace who don't really understand whats going on but are willing to take me on face value and of course this message boards which can just about answer any question you have.
I know my journey is not over but I feel confident going forward that I will face the beast again and spit in his eye knowing I'm surrounded by caring and understanding people.
I hope this wasn't too long winded but this is probably the only place I could tell this story and be understood. Although I'm probably going out of cycle I want to be an active participant in discussions and also help to raise awareness without scaring people away. I'll start with a T shirt and see what happens.
Thank you to everyone here (I feel as if I know a lot of you already) and hope to speak to you soon
Alan :)

G'day Alan, welcome, and all of us here at ch.com love your missus. She's known locally as a CH Supporter, and we reckon they're a bit special.

Glad we can help in any way,

Brian in Cairns

Welcome Alan,   [smiley=wave.gif]
Sorry it was necessary for you to find us, but now you have you can be sure you have a whole host of new friends. We all understand what you are going through and we are all here to help and share in any way we can. Feel free to come back with any ideas, questions, or just to rant if you feel like it. We're always here.
Maz.

G'day and welcome

Great to see that you've an amazing supporter and a good GP lined up on your side. The combination is just what you need.

Since your headaches respond well to indomethican there is a chance that you may have Hemicrania continua or paroxysmal hemicrania, both of which respond very well to indomethican (much better than CH normally does).

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Diagnosing CH or similar is something that we normally recomend that people go to see a headache specialist as this is a very complex field of medicine with multiple different headache types all resulting in very similar symptoms.

The 180mg a day of verapamil is a pretty low dose. Most people need 360-480mg and some go to around 1000mg. These are huge doses for the normal use of verapamil which is in controlling blood pressure so many doctors are cautious about using them. There may also be something in your medical history which means that you can't take a higher dose, so work with your doctor on this.

When a headache starts have you got anything to abort it with? Or do you just need to ride it out?

What works very well is using high flow oxygen via a non-rebreather mask. This is how I kill mine off in about 5 minutes, which sure beats riding out a 75 minute CH. Another good option is injectable imitrex (sumitriptan).

Keep reading and asking questions, you'll soon be an expert on this.

I knew I would forget some vital bits of info.
I'm sure they are clusters as some of my hits have been up to 3 hrs long  (they were fun!) with the shortest being about 20 min. The ice picks I mentioned tended to be with the shadows and although irritating, were manageable and only resulted in me pulling a face if I was talking to someone.
I too thought the dose for verapamil was low but from reading here the idea was to start at the lowest dose and work your way up which was what I was expecting. i have an appointment this week which I gather was to discuss changes but because it appears to be working, I'll maintain it. I suspect it was the Prednisone that did the job rather than the indo but from my extensive reading of the message boards you don't discount anything and some very strange things seem to be very effective for some people
The doc seems to be very knowledgable on meds as he discussed sumatriptan etc as an abortive and decided on Maxalt which I am yet to put to the test (hoping my luck holds out)
I did want to ask more about the shadows. When I started with Prednisone and then the verapamil, I got very strong shadows which almost seemed like all the symptoms of an attack without the searing pain. Some days they would be continuous and other days they would appear around the same time I would normally get a hit. It initially made me nervous as I was waiting to "dance with the devil" but they never developed past a kip 1. For a little while it seemed like I was continually walking a tight rope.
As I said I am one of the very lucky ones where everything I've done seems to have worked but I will never drop my guard  EVER ! because clusters seem to have a degree a schizophrenia about them and can through you a curve ball at any time.
It's funny how things work out sometimes. Clusters have helped me rationalize the other pains I get. I used to think my tension headaches and migraines were bad (and some were) but now having had some kip 9"s,I tend to handle these other headaches much better now, not a walk in the park but relatively speaking easier to handle.
I did read the fascinating letter from (i think Bob Johnston, sorry if mis quoted) about Cognitive therapy and the difference between pain and suffering. It gives me the strength to not be a victim but more of an adversary when dealing with the beast. i also understand that clusters are generally not life threatening and I have just to look back on what my wife went through and it helps me keep things in perspective.
I think because my cycle appears to be finishing (fingers crossed) most of what I'm learning now is so I'm prepared as well as I can for next time so I can start treatment straight away. I think I was well into my cycle this time before treatment started  :but every day I'm getting more educated thanks to you guys
Thank you for your replies as I was not sure if my post came across as gloating as it was not my intention. I just wanted to let other sufferers know that just sometimes things can go right and with the right support around you, the sun can shine again.
Thanks again everyone :)

Hi Alan,

I've read your story thoroughly and understand it well.
You've got a wonderful supporter there in your wife, for sure. I'm in Oz too and I've lived in the West before, about 20 years ago, with chronic CH. Out in the boondocks there was not much knowledge and even less acceptance of CH there. Remoteness of the location does not help in treatment. You're lucky to have the GP you have got!
I hope things have improved since I was last there.

Cheers, Ben.

edit: PMs sent and received, thanks and good luck Alan, Mike NZ.

Hi!
I was diagnosed 2 years ago & have just been 'upgraded' to  chronic. I am struggling to find a doctor who really understands CH, although my own GP is brilliant i am fast losing hope of ever being pain free.
Oxygen doesn't work for me & pain killers seem pointless.

As much as this condition just plain sucks, I'm grateful to have found people who may understand just how bad the pain is & how it affectes every aspect of your life! Ive felt so alone, like no one is ever going to 'get it'...

Hi Jen
Most people who say oxygen doesn't work are not taking it correctly. Doctors will generally prescribe 7 or 8 litres per minute and usually with a nose canula, or the wrong mask. Fine for people with respitory disorders, but not for us. The doctors don't know any better (bless 'em) and prescibe what they see as standard treatment.

You need at least 15 lts per minute (25 is better) and a non rebreather mask. If you get either of those wrong then it won't work.

CH is caused by a blood vessel in your head which dilates and presses on the trigeminal nerve. High flow, pure oxygen is a vasoconstrictor - making the blood vessel shrink again, thus taking the pressure off the nerve. The non rebreather mask is to ensure the oxygen is pure and no ordinary air gets in.

If this is the method you've already tried, then I'm sorry for jumping in. It's just that so many people continue to suffer because their doctor gets it wrong. If you haven't tried it this way, then I urge you to give it another go and see what happens. It's practically infallible.

You are right about the painkillers being pointless. Not even morphine works for CH so to continue taking them ( as I did at first, in huge doses) will just make you ill in other areas,and be of no benefit for your CH. Ask your doctor for sumatriptan auto injections. They are a vasoconstrictor (as is oxygen) and will abort the worst CH in a few minutes for most people.There are also preventatives that your doctor could look into.

Another thing you are right about, is you have now found a whole new family of folks who do "get it" and understand only too well what you go through. You'll never be alone here.

Good luck with the oxygen
Maz.

Hi and welcome Jen

Have you got a preventive, something like verapamil, lithium or topomax, that will cut down how many CHs you get? This can make a massive difference to the impact on CH on you.

Also have a look at the vitamin D3 option that many of us use. I've got well over 2 years CH pain free using D3.

Keep reading and you'll learn lots. Ask all the questions you can think of.

Hi everyone, so I'm new to cluster-headaches and saw this group so I thought I would reach-out and see what I can learn and whatnot.

It all started on May 31st, that dreadful day. I was having a smoke and talking with my Mom and bam. I looked in the mirror and my right pupil was super small, meanwhile my left was normal size. I had a feeling of extreme anxiety that something terrible was happening and I had an atrocious pain.

My Mom was freaking out really bad, and so was I. I ended up driving myself to the ER with her in the passenger seat freaking out (didn't help at all). I was confused about what was going on, and thought I had some type of aneurysm happening.

When I walked into the ER I couldn't even scan my own ID and was very confused. They ended up giving me some type of IV with codeine in it and I left the ER feeling like a rock-star. And I had Ozzy's Crazy-Train playing on the radio so it was quite the time.

Anyways, I came home and I fell asleep till the next day when I then again panicked with another headache on the right side of my head and an immense pain behind my right eye. I explained all the symptoms again to the nurse and she thought I was on drugs and wanted to give me a UA.

A couple more ER trips and a trip down to the Veterans hospital, I got a two good CT scans and a bunch of weird looks like I was on PCP or acid or something, cause I kept coming back into the ER with headache pain.

The after-effects of my CH have been a dull throbbing pain on the right side of my head and my right eye twitches at the bottom. I also get very confused over the simplest shit, and it frustrates me like no other. I spent the first week on Web MD researching EVERYTHING and I convinced myself that I had fibromyalgia  :o.

I'm sure I'm forgetting to add some stuff here. But the first couple of days with the pain meds ( butal-acet-caff) made me feel NUTS! The VA wanted me to see a psychologist and at that point I was willing to do anything, so I just went and they said I had anxiety ( no wonder, because I was afraid that this pain would come back) I still am getting anxiety just about everyday so far since my headache and not just about my headache, about other stuff also.

I have looked on Youtube and also around the internet, and I'm just grateful that mine aren't as bad as others. Maybe the magnesium IV that the neurologist gave me worked? I don't know, but so far I've only had bad anxiety, eye twitching, confusion, and a dull pain on the right side of my head and ill take that any day over those first couple of days.


PHEW! that was a lot of typing but I had to vent. I'm hoping this thing doesn't come back with a vengeance and that I can get a couple good nights of sleep. Maybe I don't have cluster-headaches? But I mean that's what the doctor told me and from everything I've read all of the symptoms are spot on.

 

And I also wanted to add the medications that they prescribed me at first and everything I took in order.

Butal-Acet- Caff * Stopped that after the first few days because it made me feel nuts

Naproxen- Took that for three days and made me feel fine but gave me tremors ( probably prescribed because I said I had anxiety)- Stopped that

Clonzapan- Took that for one day and F that. It made me feel like a zombie the first day and the next day I was feeling like euphoric.

Indomethacin- Have never taken it yet

Imitrex (generic version, Sumatriptan? -took that once and it seemed to make me trip out, no pun intended

Stopped all medications for five days and all I have now is a dull pain on the side of my head with moments of really sharp pain. Along with right eye twitching and anxiety.

Should I be grateful that all I have is eye twitching and confusion now? The first couple of days while on pain meds were nuts but I'm glad it has passed. Do some people only experience really bad cluster headaches for a couple days at a time? And then some type of after-effects? Anyways I'll check back tomorrow and I hope yall are doing good. 

Hello Clusterheadachers. I found this board about 1.5 yrs ago about 2 months into a particularly severe round with the headaches. Like a fly on the wall I started listening and learning. The D3 solution seemed too good to be true and as I was cycling out of the headaches at the time I shelved the notion of trying to start the protocol, though I did download and print Batches pdf and showed it to my neurologist (who was skeptical to say the least). 
     Fast forward a year and a new cycle started kicking in. This time I tried the Prednisone/ Verapamil route following my Neuro's advice (I've only had him for 3 yrs though I've been having the headaches for 15). After about 3 weeks I got proactive and ordered all I needed online to start the D3 regimen. I also got bloodwork done. At week 5 I started the protocol.  Intensity and duration depreciated right away (I did the quick 2 week upload). After 2 weeks I was pain free. That was a month ago!  Thank you thank you thank you thank you!!!!!!!  :) :) :)
      I just had my ACL rebuilt so I haven't been moving around in the past few weeks very much, but I will get bloodwork done in the next week and participate in the study. I have all sorts of D3 questions for you folks, maybe I'll ask them in Batchs anti inflammatory D3 thread, I don't know the best way to communicate around here.
 

Hey Nich,

You're doing just fine communicating around here and thanks for the back brief on your experience with the anti-inflammatory regimen... When you get the opportunity, share that experience with your neurologist...  That's about the only way we can get some of them on board suggesting this regimen to their patients with CH and migraines.

If you've got questions and don't mind sharing them... fire away.  That way other's with the same question will get the best answers...

Your ACL surgery will also med much faster with the anti-inflammatory regimen...  Make sure you're getting the vitamin K2 complex...  Adding vitamin C at 2 to 4 grams a day is also a great idea as it aids in building collagen. 

Take care and thanks again for the great back brief...

V/R, Batch

Thanks Batch! And thank you so much for putting together such a concise game plan wrt the D3 regimen. It must have taken a very long time to figure that all out. Speaking for myself  I can't even imagine doing all that was needed while trying to raise a family, keep the paychecks coming in and all the while dealing with the damn headaches. My hat is off to you sir.
  Well your right the knee is healing very fast, though in general I'm a fast healer. This helps in my line of work (General contractor/ carpenter). I am taking the K2. The only part of the regimen I haven't been able to find so far is the Kirkland multi vitamins, Costco doesn't sell them in Canada. If you know of another source that give you all the needed vitamins in one package I'd be grateful to know it's name.
  My first question wrt the D3 relates to the nature of the headaches I get: they are seasonal and generally tie into my hay fever cycle, though often they start before the hay fever really gets going. Start date is usually early June. This year I started taking Verapamil at 200 mg in May as a pre emptive move. It worked! No summer plagued by headaches for the first time in years. So come September I tried tapering off the Verapamil and bamm! turns out they'd been lurking in the shadows all along. I have issues with Verapamil...but that's another story.
   So to get back on track... Cyclic cluster headaches that are triggered in early summer, potentially tied into my allergic reactions to pollen (I've been tested it's mostly grass pollen related). So, do I stay on the D3 Regimen through the winter or do I go off the regime and ramp up again in May knowing that if I went off I probably would be fine as I've never had a headache in the winter. 
     The next question: I stand 6'3" and weigh 250lbs, I'm taking 10000 iu D3 a day and it seems to be doing the trick, though I haven't had my levels checked yet, which will happen next week. If I'm on the regimen through the winter would you up the D3 dose come May in order to prevent the cycle from starting, or would you wait until the headaches started before trying to stamp them out by upping the dose.  If you recommend upping the dose what serum level would you consider effective and how many IU's/ day would be needed.
  This leads to my next D3 question : you are using a different way of measuring D3 blood level content (imperial?) then my GP is using. What conversion factor do I need to translate between the two?
   That's it for now, it's Friday night and I'm going to crack a beer for the first time in a long while. Again, thank you

Nick

Just a note to say I tapered of the Verapamil completely as of a week ago... nice to be off.

Found the Multi Vitamens on line, ordered.
Looks like I found the conversion ratio I need though I'm not allowed to post the link because I have less than 10 posts on the site....Peter510 posted it in the D3 Question thread.
I think I'll stay on the D3 regimen through the winter.

The only question that remains is how to deal with allergy season, and it looks like adding Benadryl to the regimen at that point might be what's needed. A lot of you guys have more experience than me and I would greatly appreciate any of your input.

Nick

Nick,

Firstly allergy season.

Bear in mind that allergy season can be spring and autumn. People don’t generally realise that leaf mould in autumn can be as bad as pollen.

The recommendation is 50mg Benadryl (or the generic version: Diphenhydramine) daily. This can be taken at 2 X 25mg, morning and evening, or 1 X 50mg after your evening meal.

It is important to note that 50mg will make you drowsy, so if you choose that option, don’t drive after you have taken it.

Secondly, staying on the D3 Regemin all Winter:

I cannot say this strongly enough...Take it all year round, year after year...permanently. It should become part of your daily routine.

If you have to restart it when each bout hits, you will lose vital weeks getting you 25(OH) level back up.

Peter.

Thanks for the response Peter,

I gotta say it's pretty incredible to be talking to people who know and have experienced CH's. It's been a long long haul by myself dealing with the headaches and all the crap that goes along with them. I guess it's a good thing they are so rare...but it sure makes you feel alone.

Nick,

You’re never alone.

This is a great place to get information, but it is also a great place to get support and understanding.

If ever you need to just vent, don’t hesitate.

Let us know how you’re getting on with the D3.

Peter.

Hey Nick,

A belated welcome to CH.com.  Peter has addressed your questions with excellent answers and given you the best advice to stay on this regimen year-round.  There are so many health benefits made possible by taking this regimen, I've had my entire family taking it since 2012 and none of them are CHers.

Be sure to start the accelerated vitamin D3 loading schedule by taking 50,000 IU/day for 12 days.  This is the fastest way of elevating your serum 25(OH)D concentration up into the therapeutic range where most CHers experience a significant drop in the frequency, severity and duration of their CH from an average of 3 CH/day down to 3 CH/week... or they experience a complete and lasting cessation of CH symptoms.

If you've not experienced a significant reduction in the frequency of your CH by day-4 of this loading schedule, several CHers have found starting a week to 10 day course of Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day and at bedtime has worked wonders in helping vitamin D3 to prevent their CH. 

Again as Peter pointed out, Benadryl will make you drowsy so don't drive.  If you need to drive, take the Benadryl as Peter suggested once you're home for the day.  If there's no response to the Benadryl after 5 days, discontinue as an allergic reaction may not be the problem.  In this case, I increase my vitamin C intake from 2000 mg/day to a 1000 mg every four hours throughout the day and before bed.  Rationale, an infection could be the culprit and vitamin C has excellent antibiotic and antiviral properties.

Be sure to drink at least 2.5 liters of water a day and to see your PCP for the 25(OH)D lab test once you've been on this regimen for 30 days.  You can find additional information in the anti-inflammatory regimen treatment protocol at the following VitaminDWiki link:

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Take care and please keep us posted.

V/R, Batch