Welcome to our home. Your new home

Im writing this to you to give you some encouragement.

I started my "official" journey with ch in Oct 1985 and for the first few years it was an unpredictable hell..........9 years of misdiagnosis, many years of fearing the night, afraid to sleep, afraid of the hammer bashing into my skull shortly after I went to bed and waking screaming, "WTF??"  and wondering what I had done to deserve the beating I was getting.

The night hits stopped for me, for whatever blessed reason, 11 years ago, and my ch settled into an annual routine of October thru January's end.

What I have learned is that, once you think you have your ch figured out, it morphs (thanks for the explanation Guiseppi). So now I face ch in July instead of October. I think I have about  3  weeks before the beast attacks with full force.

What I want you to KNOW WITHOUT A SHADOW OF A DOUBT, is that after all these years, I no longer fear it. I used to sob into my pillow and wonder, 'why?" and beg God to give me a reason I had to face this hell.

Thru ch.com, I have learned in so many ways how to not only deal with ch, but to FIGHT BACK,  How I can prepare myself for what is coming, with information, with meds, alternatives, o2, and whachagotonhand weapons such as caffeine, ice, Red Bull, all the things you'll read about on here. Trust me, my sweet new friends, they work. You just need to find what works for you. You will find it.

Don't give up to dispair. Dont fear. Strengthen yourselves with information and the knowledge of those who have fought this fight for many years. We CAN and WILL beat this bitch.

I see so many new faces and I am so glad you are here, that you have researched your ch and found us, and in that you have found many who truly understand what you are now dealing with: the uncertainty, the realization that you are not alone,  the many questions, the feeling that once your ch is gone, then you will just "disappear and forget you have this" till the next time the beast comes calling. Those of you who will leave,  you will come back again and want/need us to comfort and be here for you. We will be. To those who leave, Godspeed and pf time to you.

To those who stay, grow strong, learn, and know that life will never be the same. Here you are understood, here you are famly and will never have to explain again. Life may never be the same as before ch, but by God, YOU will never be the same: YOU WILL BE STRONGER. . And that is the blessing I wish for you.

PFDAN to you, our newest family members. Welcome, be comforted, feel safe again, BE empowered and know that you CAN live your life again..

With all that I have,
Jen

Great post, Jen.   :)

Just another voice to let those of you new to CH, or new to CH.com know that we're here for you--and we'll do all that we can to make your journey less difficult, even if it's simply a listening ear from someone who truly does understand what you are dealing with.  You're no longer alone.  

You CAN get through this.  Clusterheads are the toughest people in the world.  You'll see.  

All the best to all of you,

George  

Thank you!

Great post Jen!  I prefer the term cluster warriors ,myself. 8-)

PFDAN y'all
and welcome home new folks!

kathy

ninja mom wrote on Jul 5^th, 2008 at 1:00am:

I prefer the term cluster warriors ,myself. 8-)

I think that would make a great T-shirt!!

Great post Jenn!!  Welcome newbies!!  Read all the info, ask questions, and make yourself at home.   :)

Beth

wrote on Jul 7^th, 2008 at 11:04am:

ninja mom wrote on Jul 5th, 2008 at 1:00am: I prefer the term cluster warriors ,myself. 8-) I think that would make a great T-shirt!! Great post Jenn!!  Welcome newbies!!  Read all the info, ask questions, and make yourself at home.   :) Beth

Welcome home! We are here to help you, so let us know what you need!

Hey there. This post is more towards the teens who suffer/support on the site. I'm Felicia and my dad has been suffering since I was about 7. I'm now 16. It's been a long hard road for both of us and it's one we're still on. Anyways, I just want to tell the teens that if they want some one to talk to their own age (which is some times easier) then I'm your girl. I'm here if you want to cry, rant, bitch, or just talk. Feel free to PM me any time. I don't know much about the meds but if you listen to the people here I'm sure you can find what you're looking for. I've said many times before and I will say it undoubtedly again: Hang tough, smile at death, fight hell, and refuse to go down anything other than hitting hard and still swingin'. Much love and vibes to you all.

Broken(aka Felicia)

Great post, Jen! Thank you. :)

PF days to all,
Sanna

This thread needs a bump.

gizmo wrote on Jul 28^th, 2008 at 3:36pm:

This thread needs a bump.

This thread needs a sticky  8-)

Yup, that would be the ultimate solution.

gizmo wrote on Jul 28^th, 2008 at 3:36pm:

This thread needs a bump.

What's a bump?

Replying to a thread to get it back to the top.

Great post Jen!

Many newly diagnosed folks will be reading this and feeling a great amount of hope and joy that someone else is going through the same thing and that there is hope that the silver bullet/coping mechanisms can be found so that life can go on.

Welcome to all newbies.

Em
x

O okay, didn't know that.
Thanx for explaining.

[smiley=thumb.gif] NICE!!!!

i am not only new to this site . i have never written on=line ever. i use the internet to read and learn. so you have to excuse me if i don't understand how to use this or if i don't understand abbreviations.since my wife found this site about a week ago i have read through it and most of it's links and feel compelled to write and become part of your family( you have already read my mind or have been in the room with me all these years). i am so excited to have found that i am not alone anymore. i have had CH for 27 years and have tried just about every treatment i have read here (ergotamines,indocin,imitrex,painkillers,ice packs,and much more)usually with not very satisfactory results.i just ordered oxygen and pray that it will provide some relief. i know from all my years of experience that nothing will  completely cure or fix this curse as it continually evolves and what slightly works one cycle/episode does not always help the next. what is very exciting is that i now have a place to come to where i am understood( doctors are just practising).i have not found a doctor in all these years that i would recommend.i have tried prescription drugs and have suffered their side effects i now try and control my CH with food supplements and proper eating habits. it has been through trial and error that i have learned many of the insights that are contained on this and other sites, but i did not have the benifit of the web.what i want to say is that if i can help any of you through my experiences please let me.if i can help raise awareness or help raise monies please contact me. i do have many contacts and have raised money for many charities and organisations over the years. it certanly would be pleasing to help with something that i am so familiar with and i know would provide relief for so many. it's amazing that i did not realize all these years that i am not alone. thank you. my name is christopher wallace and my e-mail is achille062@aol.com

Chris
Welcome brother. 29 years of clusterwars here.  :P Stick around and dont be afraid to jump in. ;)
all the best
thebb

Hey there, I'm absolutely delighted to find this site. I don't really want to go over everything that's been said already but it's fantastic to have others to chat to that have the same shite going on in their poor wee heads. I'm fairly lucky to have found you all so soon after being hit by CH. I've only had them for about a year. My boyfriend tries his best to get out of my way when it gets bad but sometimes I want him to stay with me. Not typical I understand, but ya know....just sometimes. I've also had the list of rubbish, stop drinking coffee, stop smoking, just lie down and have a sleep, why don't you stop walking around the garden at 3 in the morning, if you wrap up warm it'll help etc.

My doc is wonderful, she understood what I was trying to tell her straight off. I was sent for a CAT scan to rule out a tumor etc but she was the one who said CH. I never even heard of them before. So far it's been cronic, I'm hoping for episodic, that way I might even be able to go back to work. I had to leave the job I loved because of my stupid head. I was a bar tender, and a damn good one. Low paid but it was a great laugh!! My boss was great too, he said that the job was there for me when I wanted it, but since then I haven't even been able to go out for the night without wanting to kill the entire drinking population I can't see that happening too soon :'(

Anyway, that's all for now. Again, great to find you lot. Chin up lads!!

davi_doyle wrote on Sep 28^th, 2008 at 11:08am:

Again, great to find you lot. Chin up lads!!

Atta girl, Davi. Come in swinging, take no prisoners, full steam ahead and damn the torpedoes. Only way to beat this monster is take it head on and smile sweetly while kicking it to death.

It's all in your head, you know.

Yeah, cheers mate! Thanks for the great welcome! [smiley=beer.gif]

please let me extend a welcome to you also.  Sounds like you have a great attitude and THAT is at least 50% of the battle.

Don't hesitate to go to one or more of the boards here and ask questions.  Since you are new to CH..you just may have one or two.. ;)  This is a great family that you are now a part of.!


Linda

I am so new to all of this.  My husband has just been diagnosed after 5 1/2 weeks of mind numbing pain.  I am coming to grips with this as much as he is being his caretaker and all.  It is so hard to watch a healthy man go from being happy and full of fire to crying and begging to me to help him end the pain in his head.  I am so glad to see there is a support website for me (us) and yes, you were right - this IS my new home...

Hi Helpless.  I wish we could have a first name to address you by,  as "helpless" denotes that there is absolutely nothing you can do and that is not correct.

Start a new thread under the 'supporters section below and tell us something about your husband and yourself.  What treatments his Dr. gave you to try, etc.  Did he precribe oxygen?  THAT is our number one aborticve around here for most of us.

The reason I say start a new thread is because your post may get lost right here and not enough folks will see it.

Welcome to the family.  We will try to help you as much as we can.  As a supporter you are not alone anymore..and neither is your husband.

Linda

Hi helpless.  Welcome to the family.  We're glad you found us, but sorry that you had too.  I am a proud supporter too.  I've had that helpless feeling many times.  It's not easy to watch the one you love suffer so.    

Ditto what Linda said.  Get on supporters corner.  More people will see your post and we can get to know you and your hubby better.  Also, get him on the boards too.  It took me a while to get my husband on the boards and he is so happy that he is.

Your not in the fight alone.  There are many CH sufferers and supporters here.  We will all try to help you as much as possible.

Hugs,

Jen

Thank you for this.  It's so validating and comforting to read posts like this and know I am not alone.

I've been away from here for 6 years.  I guess I'm fortunate since I was CH free during that time.  

I just got back (to VT) from AZ after achieving a dream of mine and hiking the Grand Canyon from North Rim to South Rim.  However, my joy was stopped short when I emerged from the canyon and within a couple of hours experienced the most horrific CH ever.

Took an ambulance to the ER 80 miles away in Flagstaff and was treated with Oxygen and prednisone.  Prednisone seemed to lick this in the past but now it seems different and less willing to go away.  I just started coming off of Pred. and my does is 1/2 and I had another two CH attacks during the early morning hours (1-3) pain.  I'm so scared.  I'm not strong enough to handle this I think.  The pain is so intense.  I'm 43 and find I'm sobbing like a baby when I think of this occurring and having to go through this again.  It's hard to make people and coworkers understand.  

I'm rambling a bit now - I think I just need to get this off my chest.  I want to try anything and everything to make this stop and to help halt attacks so I am open to anyone who can offer insights and hope for me.  Thanks for reading/listening.  - Ray

Ray,

Hang in there.  Lot's of god support here on the boards.  Are you seeing a neuro? Get some oxygen with a good non-rebreather.  Don't let the beast get you down.  You will survive and be stronger for it.   Wishing you pain free time.

Regards,

Malcom

the whole support group thing is verey new for me but Iv had ch now for 15 years. i just found this site this morning. I was starting to think i was alone or insane. I'v broken an arm a leg, several fingers,and had at least 12 major surgerys for things other than ch and ch is the most intense pain Iv ever felt. I havent shed a tear in 20 years for anything. when I found this site this morning I cried allday, Im so glad i found this place because i need help. I should go, the beast as you call it will be here sometime tonight.                                                                                                                                                                                                             sincerly J.S                p.s.God bless you all                            

Hello to all.  My name is Doug and i started getting CH around the age of 20-21 while I was a roofer.  They started off as not being so bad, just thought I was starting to get headaches because of being out in the sun so much.  The years past i found a new job but my episodes got worse.  They got to the point where they where so bad that I would just leave my job and drive home to cry and pace around my house.

I have become a coffee addict.  When i was 24 i finally got diagnosed with a migraine and was given Imitrex to help kill the migraines.

After 4 years of shelling out hundreds of dollars over the course of an attack I went to see a new doctor.  Now, finally at 28 years old I have been diagnosed with CH.  My doctor brought up CH on the internet and everything fit... the stabbing pain, the pacing,  the tears, the snot, the attack periods,  everything.  It feels good to finally know what is really going on.

I am entering week 4 of my episode (it usually strikes around September-October and lasts around two months).  I am so glad I found a place with other people that know the hell that I am going through.  I have felt for so long like I have no one who understands the severity of this condition.  

I have my first Neurologist appointment in 2 weeks.  i feel lucky, i live around Hershey PA and the Hershey medical Center has a Severe headache Clinic.  I hope to start getting the help that I so desperately need and want.  Thanks for listening.  I hope to get to know you all.  Here is to my first 7 years of fighting the Beast.  Cheers,
-Doug

Hello all you happy people,
     First off, this is the most amazing site ever, and yes, I might have even shed a tear right here at work the first day reading through it. Its the first time i have ever in my 9 years of being a Clusterhead to have the pleasure of knowing I'm not alone with my nightly beast.
    At first, much like most of you, I was told it was a migraine, then sinus headaches. Then, of all people, my kids Ped doctor suggested CH. Since then I have  pretty much just dealt with the beast on my own. Well, cant say that, my loving wife has been more than supportive. Untill this year's clusters. Wifey dragged me kicking and screaming to the Doc's office for treatment. Never been much of a lets go to the doctors office kind of person since all the doctor's I've seen in the past really didnt know what I was going through. Well, that brings me here to this wonderful community. Its a pleasure to be here amongst understanding friends. I'm not much of a poster, but I will be here in the shadows.
                                                       Chris

Jen,

I'm a newbie and you are the first post I read.  I hate to say this but it brought a tear to my eye knowing that there are people that understand.  You put everything so perfect, thanks. I hope to find out what works for me.  I've had them for 7-8 years but it has been the worst ever.  Going to see a neurologist tomorrow, hoping to try something new like oxygen.  Talk to you soon hopefully...

Mike

I am new to this board and happy to have found a place for support and information.  I have had ch for 40 years...certainly thought I would have outgrown them by now.  I am on week 3 of this cluster after being free of ch for over 3 years.  Three years ago acupuncture did the trick for me, but I'm having no success this time.  Do you find that there is a benefit in seeing a neurologist over a family doc?
Nancy

I've gotten alot of iformation from this site in the past but never really took the time to talk to anyone about my "condition". I'm not so afraid to talk about it anymore, instead of feeling sorry for myself I'm more pissed at the fact that I have to suffer but more informed then before. I am on my 5th round of this crap about 2 weeks in.I finally know what works for me but still fun dealing with the insurance companies to get my med's..I've noticed alot of family and friends are very supportive and although I wouldn't wish this on my worst enemy it's nice to know that there are other people out there that actually do understand..I'm Shannon by the way I'm 31 and live in Pennsylvania and I think you are all God sent

I have suffered from CH for 18 years (at least) and was diagnosed for CH only 6 years ago.  I have had terrible headaches since elementary school. Not knowing is the greatest pain. CH.com has taught me, what my disease is, how to cope with it and, how to find treatment. For years, doctors treated me for migraines but, I don't suffer from migraines therefore, I found no relief. Finally, I started my own research and found CH.com.

Now I know more about my situation than my neurologist does. Find a good neurologist with an ample sample closest. Imitrex, Frova, Maxalt, Oxygen, can be obtained for free or discount prices. Asking your doctor to submit a standing order to the hospital for Imitrex injections will be a less expensive alternative to costly ER visits. Make sure that your neurologist sends a letter to your insurance company explaining your dosage/usage needs. Get prescriptions for more than one "drug".

Keep in mind, they don't last forever. As I get older. the headaches become less frequent. The more headaches I have, the more I learn about them. They will not kill you, it only feels that way. People love you and will hold your hand through it (even if you don't want them to). Everyone around you feels your pain (sort of). No matter how much you cuss, who you cuss or, what you cuss about... your family, friends, and God love you.

Hi All,
I have been a member for awhile. I've read every article on here, and smile at most and shook my head yes many times. I am not the only one. I am a 32 year old male, married 2kids, one boy, one girl. When I was about 13 years old I started having headaches, they were so bad I would hit walls, bang my head on tables and finally pass out in a seizure like attack. I had many ambulance rides to hospitals. I was given spinal taps. Ofcourse nothing was wrong. At the age of 18 I joined the military(Navy) I had to lie about my headaches. Something happened at bootcamp no more headaches. I should probably mention both my parents smoked cigarettes at the time. I beleive they are one of my triggers. I made it through 3 years where I don't recall having migraines. I was also very fit and in great physical shape. When around certain smells, cigarettes, strong perfumes, antfreeze, I can almost feel them coming on. I suffered many years not knowing what was going on. I learned to cope by going outside in extremely cold weather, I also like to put a hairdryer to my head. About 6 months I changed my primary care, I explained to the new doctor my symptons, She immediatly knew it was CH. She gave me forms to read, I literally cried. That night I found this website. I now have Imitrex in a 50mg pill form. My insurance allows me 6 pills a month, last months I needed 7. I had a massive headache that lasted for 24hours but did not become a CH until taking some over the counter medicines. I ended up passing out and having a seizurelike attach, all this in front of my 3 year old son, if they would have only allowed me one more pill I would have made it through the day. I did end up going to the hospital, I was giving a 50mg pill on Imitrex, 2 hours later gone. I pay over $600 a month in health ins and my co pays another $900 a month. I was giving today 9 pills of sumatriptan. I took one tonight. I believe my headaches are some how related to my eyesite, if I watch too much tv or if I am on the internet too long, I can't go to a movie theatre. In all these cases my head hurts but does not turn CH until I go to bed.
I know this is alot of info I should have put in multiple post but this feels good somehow.
Good night
Chris

I want to thank you and all the members because you guys have got me through the last couple of weeks. ;D

This site is a real respite for anyone fighting CH. I have to to thank all of the members here myself. AGAIN. :-* :-* :-* :-* Glad you made it here Clusterhead.
the bb

Hello All
just wanted to say hello and I also am so glad to have found this site.
Reading EVERYTHING at the moment, I am trying to understand what a shadow feels like as I think thats where I am at the moment. Can anyone tell me does a shadow come before an episode or after, Ive had some niggling stuff over xmas and am feeling Im going in for full throttle.

Brief History
Diagnosed with CH March 2008, 47 years old, Prescribed Indo which I dont think is helping, want to ask for Topomax as have read good things about it also as am also a Migraine sufferer, but there really is not comparison to CH's.

Still seeking the answers and off to buy some strong coffee and red bull this pm as this was the first I had heard about this.

Great site and hope to get to know you all over 2009 x

Hi all,

I, too, am a cluster headache sufferer  :'(.   Mine started at the age of 19, were episodic, and at this point, at the age of 34, they have become chronic.  I've been in a cycle, off and on, for two years.  Whenever I'd decrease the Verapamil, the beast would return.  

Unfortunately, xmas-eve turned out to be the beginning of the next full-blown cycle. Thankfully, I was home visiting my family when they started; they have been a god-send.  My doc called in a prednisone pack,, which ended Wednesday.  By Wed. night they kicked in heavily, 5 within 30 hours, so I ended up at the ER yesterday.  The doc there gave me another pack so hopefully, this will be enough to get me to my neuro. appt. Jan. 7th.  My neuro. also called in Lithium today but not sure what other preventative to use, since verapamil stopped working.  Any suggestions from fellow clusterheades would be helpful.

I used to have them timed and knew that they would end at least 3 months after they started.  The "not-knowing" of when they will end is driving me bananas.  Has anyone gone from episodic, to chronic and back again?  Or, has anyone had a chronic cycle finally end?  Any advice you can give would be great.

Thanks for this site.  My mom is able to sit by me and attempt to rub my neck when my headaches hit but no dad can handle watching their little girl bang their head and scream.  So yesterday, my dad spent all day researching, looking for ways to "fix" this problem and came across your website(thanks dj for facilitating this).   I think he now knows more solutions to these horrifying headaches than I do.  He's read so many posts, articles, links, etc. that have been extremely helpful.  So, thank you to those who share themselves, their experiences and their treatments.  You have brought a wealth of knowledge into our home.    

God bless,
Gail  

Thank you for this sight but I am concerned that this is going to continue to be a very long road.  I suffered years ago without any treatment and they just went away.  Now it is back...almost daily, several times a day.  I take Topamax, Verapamil for preventing which is not working.  Then when it begins Axert and phenergan.  I see my PCP tomorrow.. I hope for a referral to a neuro...

Hi all - I'm a supporter and not only do I support my hubby of 26 years in his fight with the beast, I try my hardest to support all of you.

Whether you're brand new to the war or an old vet, we're here for you.  There is a huge wealth of knowledge amongst the sufferers here.  Pick their brains and please please please, if there's a meet & greet in your area, summon the courage to attend.  You'll truly feel like you've found a family you never knew you had.

Great post Jen! (She's the BEST, for those of you who haven't met her.  A boatload of wallup packed into a lovely little package)

Deb B wrote on Jan 3^rd, 2009 at 9:36pm:

Thank you for this sight but I am concerned that this is going to continue to be a very long road.  I suffered years ago without any treatment and they just went away.  Now it is back...almost daily, several times a day.  I take Topamax, Verapamil for preventing which is not working.  Then when it begins Axert and phenergan.  I see my PCP tomorrow.. I hope for a referral to a neuro...

Deb - start a thread all it's own on the "getting to know ya" board and include all the above information.  I'd not want your post to get ignored in this thread.  You'll be thrilled with the arsenal of help that will arrive!

OMG! I AM HOME!!!

Hi All,
I thought the brutal headaches i was having were just REALLY bad migranes. The earliest memory i have of getting these headaches was about 10 years ago....they would come on real fast and drop me to my knees everyday for a few months and then would disapear for a couple of years. I thought it humorous that people here call them "the beast" since that is how I used to refer to them. I haven't been receiveing any treatment as of yet but I have my first appointment with my neurologist next week. Hopefully he will be understanding. There seems to be a TON of info available here. If this cycle doesn't end soon i may go insane. Are there any over the counter drugs that even remotely knock a dent in these things? So far nothing I do works....all I can do is wait them out.

Welcome Nimrodson,

there aren't any OTC pain killers that really help but there are other things you can try.
An energy drink at the first sign of a hit can abort the hit or at least lessen the intensity. Strong coffee helps too.
Then there's cold or hot showers and ice packs.
If your hits occur mostly during the night you can try melatonin, ~9mg before going to bed.

Oliver

Well i know i used to get really bad migranes when i was a kid (nothing compared to this pain though) and hot showers were really the only thing that helped. Maybe i will try that while drinking a monster with an expresso chaser. What is melatonin? Vitamin...herbal? Sorry i'm not a big pill person so i don't know what that is. I hate taking meds.

Melatonin is a hormone. You can get it as an OTC supply / addon in the US.

When you are having a cycle do you feel run down all day long. Not really tired but just out of energy? I know that i can tell when one is about to come on, usually at night, but this is different. Call it the shadow i guess, but it seems to "shadow" me all day long. does that make sense?

Yes, that makes sense.
Shadows lasting all day long (when not treated with O2 or other abortives) are pretty "normal" (let's try and define normal with CH ;) ).

Oliver

yeah no kidding. Nothing normal in our world. I think my CH's are morphing into somthing new. i don't recall ever having a cycle this long or painful. They have been switching sides and some days i don't get them adn some days i get two or three. I hope that's not a bad sign.

annakomda wrote on Jan 15^th, 2009 at 9:36am:

OMG! I AM HOME!!!

[smiley=hug.gif]   yes you are :)   Welcome.

Hi All

Well im new to this so please be gentle...diagnosed with ch in June 07 and had my last attack in August 08 which involved been rushed to hospital at midnight. Im now on 75mg of amitriptyline a day and to be honest some days dont know if im on this planet or the next planet.

Im single and in yorkshire and im pleased to have found this site and know that im not alone. :) Would love to hear from other people as this is all new what else do i have to look forward to with having ch.

Hey Lynn welcome to the board. IThere's quite a few of us from your side of the pond, hopefully they'll be alonmg to chime in. The best approach to CH is a 2 pronged one.

1: a decent preventative med. This is  a med you take daily, while on cycle, to reduce the number and the intensity of your attacks. I use lithium at 1200 mg a day. Other popular preventatives are verapamil, at doses higher then it's normally used, and topomax. Many others to read about and discuss with your neuro.

2: a decent abortive. Oxygen should be your first line abortive. Read the 02 link on the left. For 02 to be effective, it MUST be used correctly. Your lungs must get ONLY pure 02, no outside air, no exhaled air. This is best accomplished using a non re breather mask and a high flow regulator, at least 15 LPM.

You will find most doctors are clueless about CH. No fault on their part, there are just very few of us and most docs will never encounter a patient with CH. It's incumbent on YOU to educate yourself, form a partnership with your doc and develop a long term plan to deal with it.

Glad you found us, you'll never be alone with this crap again!

Joe

Thanks for being here for us... I was just diagnosed...  This is all pretty new for me.  It's really great knowing y'all are here.  I'm sure I'll have tons of questions.  Not to repeat myself, but it's hugely comforting having a place to turn where everyone understands this beast... Thank you.

Welcome to the board, you'll never be alone with this ailment again! You've got a ton of people who'll do anythng they can to help you. When you get a chance, please post what you're treatment plan is, maybe we can help tweak it a bit!

Welcome home.

Joe

I just discovered this site yesterday and it was like a weight had been lifted from my shoulders.  It is so hard to suffer and not be able to explain what is really going on and how I really feel.  People give you "the look" like it can't be that bad but you know better.  I actually suffer with the ch along with migraine headaches so I feel like I have been cursed twice.  As I type this I am having an alright moment, but as well all know each good moment must be cherished because it can change in an instant.  I have suffering with this bought since the beginning of the year (what a way to start the new year).  I guess I shouldn't have been surprised but I was.  It had been a year since I had an episodes so this threw me for a loop.  

It is so nice to have someone to talk to who know what I am going through.  I find it hard to explain to someone who says they care about you but runs in the opposite direction when the pain starts.  At least now someone can listen to me.

The fear of going to sleep for fear of waking up with pain is my reality.  Because of the migraine nature of my ch I now have been really dealing with the nausea.  I mean what does a 110 lb 5'2" woman need to throw up daily?  I really can't afford to lose any weight but when you can't keep anything down what do you do?  

Funny how I rock when the pain is at it height along with squeezing my head knowing that hasn't worked in the past and that no relief will come of it.  But I guess it makes me feel like I am doing something.  I think God has heard my voice so much lately he is tired of hearing it, but I can't stop asking "Why me?"

I am going to try the "water treatment" and see if that helps.  The bathroom has been my friend today ::) and will probably be my friend for days to come until this episode is over.

Thank you so much for this website.  I now have a family I can talk to and who will understand.

Welcome to the board...wow..one of the "lucky" dual diagnosis people, cluster AND migrains. Ouch. :-/

What kind of meds have you been on? What has worked and what has not? Do you take anything daily as a preventative medication? Do you have oxygen or imitrex as an abortive? Let us know what your treatment regimen has been, maybe we can toss a suggestion or two to take back to your doc.

Hoping you catch a break soon.

Joe

People don't understand unless they have one.  They think you just want to be babied. My sister get's them too and still goes to work. I work too but fortunately not full time at the moment so I have some days off.  

It feels like the Grim Reaper is coming to get you.  My sister says its like a Pirates of the Carribean movie where you are a pirate with a knife in your eye looking around  ;D

We are both fighters, my sister and I.  I refuse using steriods or lithium as one doctor quickly wanted me on.  I use varying tricks of both health products and medication that often knock it away for me.  So far, we work through them.
Sometimes we feel like this  :o  and doing a lot of this  :'(   but I just refuse to let it stop me living life or to cater to it so that its the center of my life.

I think women have it harder though? My sisters seem to get them more with their cycles.  

Thanks for this site. Its good to be understood.

Larry, don't be too hesitant to try lithium. I know it's got bad visuals from Hollywood, you'll be a drooling, mouth breathing moron incapable of not wetting yourself!

The doseage we take it at for CH is far below it's psyche uses. I can barely tell I'm on it and it blocks 70-80% of my attacks. Oxygen pretty much kills the rest.

And everyone knows women don't get CH, they just have mild migrains they exxagerate! ;) (Running and hiding from Linda!) ;)

Glad you found us, hope we can put you in a good direction.

Joe

Be very very careful with new meds.  I had a script filled once and it said take 1-2 tablets at bedtime.  I took 2 and it almost killed me.  I have never been so affected by a medicine in my life... I should have gone to the ER.  I called the doctor and he said I had to get used to the medicine so only take 1 tablet.  It almost did the same thing. Finally I called the doctor and asked if he was sure 100 mg of amitriptalyne was not too much. He siad 100???? I prescribed 10mg. Turns out the pharmacy filled 100 mg by mistake. So be very careful.

Gary

I am sitting here reading these post in tears.  I have found someone that understand this is not a migraine!!!!!!  I'm giong on 18 days in my 2nd cycle, the last was about 4 years ago.  I wasn't diagnosed until this time.  I'm really glad to be here.

Tough call about which is the best part about this site.....the incredible wealth of info??? or NEVER having to explain what a CH is and that NO it's NOT a tension headache we CAN'T just relax and no it's NOT just a migrain! Welcome home. ;)

Joe

Well hello fsister and brother headbangers.

I just signed on, via OUCH.

CHs every Jan-Feb  from 1975 (the very day I met my second husband) to 1990, just before we broke up. Go figure.  ;)

Then, NOTHING for 19 blessed years. I thought that was it.

Last month, mid-February, 4 a.m.,  I am dreaming about holding some very tough and frustrating negotiations and I start banging my head against the table. WHAM. I wake up and I know the beast is back.

19 years later.

I jam 3 extra strength Tylenols down my throat and start taking deep deep breaths saying this is not it, this is not it, this is not it.

But it is.

The next morning I check Dr. Google because I figure, after two decades, there are cures, explanations, treatments ... But no.

Now I run through an entire oxygen tank a night, at $30/each. Three headaches, at 2, 4, 6. I have nasal Imitrex which works great but they don't want me to use it more than twice a week because I am on prozac.

I started beta-blockers last week and had two headache free nights but I think it was just a coincidence. I am also on 750 mg. Epival every night.

I quit my wine, smoking, cheese, chocolate, beans, eggplant, onions, tomatoes -- all the potential triggers.

Today I had an MRI to rule out an aneurysm and a tumour and last week tests to rule out glaucoma.

Waste of time because we know what this is, don't we?

I just don't want to go to bed. Last night I had 5 headaches.

So here I am. :'(

Ouch....I thought it was bad enough coming back after an 18 month remission......damn....19 year remission!!!!!..........have you ever tried melatonin? It's an otc supplement you can find at vitamin and health food stores. Many can avoid or reduce the night time terrors by taking 9-15 mg 30 minutes before bed time.

Glad you found us, start educating yourself and working with your doc. Glad you already have 02, 30 plus years it's still my first line abortive! Welcome home you devil you! ;)

Joe

Thanks, or should I say tante grazie?

I read about melatonin on Dr. Google and tried it (I had been taking it on and off over the years for jet lag, etc.) It just made things worse because it seemed to make my REM sleep more frequent.

One of the things I find fascinating about CHs is their connection to dreams, at least for me. My very very first attack, first headache, was unforgettable because of the dream from which I woke up. My ex and I were shopping in a supermarket and came around the end of the aisle where there was this huge display pyramid of giant quart-size bottles of a strong aspirin-codeine analgesic then-available OTC in Canada called 222. They were on special. I started grabbing bottles and throwing them into the shopping cart and told my husband, let's get a lot because I have a helluva headache! next thing I knew, i was sitting up in the dark, rocking back and forth, clutching the right side of my throbbing head.

You know the rest.

Anyway, melatonin makes me dream more. So I think I will pass.  :(

I always incorpoarte my attacks into my dreams too! I dream an attack is starting, I dream I'm rigging up my 02...I dream the 02 isn't working!!!! By the time I really wake up I'm usually pretty deep into an attack!!!

Joe

Joe,

I bet most of us do.

I rarely remember my dreams under normal circumstances but when the beast has me, I dream in cast-of-thousands, 3-d, Imax, THX spectaculars.

I am a chocolate addict and I decided to forego all possible food triggers (the only one for sure is booze) just in case. Last night I dreamed I was eating chocolate covered almonds when I suddenly realized that this was the wrong thing to do. I started to spit them out into the sink  but it was too late. Pound pound pound wake up.

Maybe we should have a thread?

There have been several dream threads in the past, they get hysterical after a while! ;D It is fairly common!

Joe

hello i'm a newbie here but have suffered from episodic clusters for about 15 years.  and yeah i'm lucky enough to have MS too on top of it..  funny thing is i can deal with the MS..  these cluster cycles put that to shame.  i've mostly used prednisone to prevent them once the cluster cycle starts and recently my doc wants me to use more verapamil and i hate that stuff it doesn't seem to work that great.  maybe i'll get a cluster every other day as it seems to just reduce the frequency while prednisone totally prevents them.  

it's good to see a post of people who can understand this ferocious pain instead of normal headache and migraine sufferers telling me to try alleve or some special tylenol.  or they tell me how they understand bad headaches and that just annoys me more than anything.  

my cycles seem to happen once a year and last for about 8 weeks.  sux because i do love beer and spend so much time tasting different beers it's such a habit i love that i have to sideline when my clusters start.  many days i am rubbing my temples saying thanx god for givin me MS and cluster headaches i really appreciate that.  so this board makes me feel good cuz it's nice to see there are other people out there that know what it's like and yeah a little misery loves company right???  but hey i swear i'm normally in a good mood!  come see me in like 6 more weeks!

Welcome to the board! yeah prednisone will provide 100% relief for me too, but long term use can cause some nasty side effects. I use prednisone for the 2 weeks I'm waiting for my prevent, lithium, to kick in. Like you, I love my micro brew beers, but on cycle it's just not worth it! It's like a guaranteed hit if I try a beer.

You haven't mentioned oxygen. Still my first line and most effective abortive. Read the oxygen link on the left, used correctly it's been a very effective abortive for many!

Glad you found us, hoping you catch a short cycle and can get back to your beer tasting!

Joe

found ch.com two years ago as I was trying to learn about ch. rediscovered this community yesterday and am happy to become part of this network of individuals. i am 58 years old and am experiencing my third cycle of ch. the past two cycles have lasted almost exactly six months, even though they started at different times, jan and march. this cycle started in jan and i hope it ends in june. i find that sumatriptan injections work the best and relieve the symptoms within a reasonable amount of time. i also use the sumatriptan 100mg pills when i feel a ch coming on. i just talked to my doc about O2 and are going to give it a try. in addition to having to deal with the horrific and fearful experience of ch is having to deal with the insurance companies that just don't get it, or they do get it and just don't give a damn.  thanks for letting me be a part of your community.

Danged glad you've joined us! If you have not already done so, read the 02 link on the left. HOW you use it is critical to its success. The key is to get 100% 02 to the lungs, no exhaled air, no outside air. That's why we recommend the high flow regulator and the non re breather mask.

You haven't mentioned any preventative strategy. With cycles lasting as long as yours do, you may want to read up on the options on the med page and discuss with your doc. I use lithium at 1200 mg a day while on cycle. reduces 70-80% of my attacks, which really cuts down on the abortives, imitrex etc.

Glad you're here, hoping we can help you out!

Joe

great response Joe.

How 'bout Verapamil too as a preventative.  Seems to work really well for a lot of sufferers with long-term cycles.  

And DEFINITELY look into the o2!!!  Kicks some serious beasty ass if used right!

You do not have to be afraid of what's coming after a long remission. Use that time in between cycles to school yerself - prepare for what could be coming and be ready. Being ready gives YOU more control.

Hugs,
Jen

Hi!  I am a new CH member/sufferer (6mos) & have been a migraneur for the last 5 years.  I have been on preventative Topamax 75mg/day for the last two years, Norvasc 5mg/day also for the last year (calcium channel blocker - supposed to be prophylactic for migraine not sure about CH) and have taken a bunch of the triptans to try to abort - Relpax, Imitrex, Maxalt MLT (worked best as it dissolved on tongue & worked fast when I was sick vomiting and couldn't take pills.)  In Oct I started getting the clusters in 3-week periods with migraines in between - thought I was going to die!  My GP prescribed Fioricet as a rescue drug and told me not to stop the Topamax when I tried telling her it Obviously wasn't working!  :o
So I decided to find another neurologist hoping he'd try another preventative.  He asked me if I was having clusters still, and when I told him not at the moment he seemed to wave them off.  They started a few days after I saw him.  >:(  here I am amidst my third cluster episode cycle and all he had to tell me was that Topamax was the best that there is for me - take 2 Aleve in the am, take all Topamax at night instead of splitting it up am & pm, and try Treximet (just 85 mgs of Imitrex with 500mg Naproxen - did Nothing for migraines or clusters!!) and Imitrex Injections to abort.  Wow - that 6-mg shot kicked my butt - but in about 30 mins, my eyeball wasn't going to fly out of the socket any more, and the sharp stabbing pain in it subsided.    
SO - I am going back to see this new neuro in a couple of weeks and was wanting to know if there are any people out there who have used good preventatives for migraines And CHs?  Thanks for any ideas.  
Val

As my screen name suggests I have had clusters for a long time.  I had them for 30 years and then had a remission for about 18 years.  I am in the middle of my first attack in a long time and am having a hard time dealing with the reality of their return.  I have had all of everything anyone has described; the pain, the pacing, the fear of going to sleep.  The problem I think we face is getting the medical and insurance worlds to recognize our affliction as something different from migraine.  My current doctor had a bout of clusters 25 years ago and he still treats mine like migraine.  One would think that of the tens of thousands of doctors in the country one would lock in on this problem and become the expert who could advise us on the best treatments and not leave us to find them on our own.  Blood vessels don't just swell.  Something makes it happen.  How can it be such a mystery?  Anyway, I am glad to find this site and find people who don't have to have the pain described to them.  I'm not sure why we use secret names on the internet.  My real name is Joe.

I was going to write you a message, but my nose is starting to run.  Maybe in an hour or so I will come back to the forum.  I'm going on little sleep now, and I'm starting to be an ass to my wife even when I'm not having a headache.  She tells me she understands, but I don't think anyone does.  Believe me when I say I have been in horrible situations in the military (combat) and i fear this enemy more than any other I have fought.  I don't know what I want to gain from this forum, I'm not the type to talk about my problems, but i guess i just want someone to tell me that I will be ok.

Thank you Jennifer  (tears)   :'(
I am so glad to have found this site, 20 plus years of ch and just finding some answers.

:-*Greetings to u all. I found this site and read how familiar all of this is.  Sometimes thinking of the pain makes my jaw ache. Ok so I am 38. I had regular migraines from age 6. When I was 19 I began the wonderland of pain in which we live. Because I'm female it took over a year of regular meds including antidepressants and me slicing my wrist from pain as I tried to put my head through a wall, that a doctor took the leap and said you have clusters and migraines. I have been through ergotimines, anticonvulsants, several triptians, channel blockers and steroids. Not to mention the stay in the hospital during a 3 day attack every 2 hrs, where I was pumped full of dhe... god that burns!  I gained weight and got thrush from the prednisone which used to stop the cycles. I am taking lithium as a prophylactic and dhe, migrinol currently. The side that my clusters are on never feels normal anymore and I have begun to experience spasams and paralysis on that side. Dr. Tells me that's some other rare migraine symptom. The trigger point injection used to help, but this last one seemed to blow it all up. Well, I'm not sure how much of. 19 years to cover now.... I've never had a year of remission.. god i'd love a break.  Bless you all.  Nice to see I'm not alone. I'm kinda crying.  But I can feel an attack isn' far off right now. I pray something works for us all.

new to this site but old to the pain. i think ch is the uninvited guest who leaves last but comes right back to annoy us.
since finding this site not even a wk ago i have been looking back and realizing that my CH's have certain triggers some times. the most prominant being cigarette smoke (AND I MARRIED A SMOKER...!)
this past wk i had to work with a "chatter box" who ultimately thought i was mad at her until i explained to her what was wrong with me...my point??? i am glad to have found this site because now i no i am not alone at being "missunderstood"     :D

There is a great "letter to friends and employers" you can print out that gives them CH in a nut shell! It's awesome to find a group you can talk about CH with out the 10 minute explanation, aint it?

By the way, watch out for alcohol also, an almost universal trigger for most while on cycle!

Joe

Just wanted to say Hi and thank you soooo much for your comforting words!! I'm sitting here in tears trying to figure out what the heck's happening to me!  :'(

Long story short, my cycles came and went every 18 months like clockwork for many yrs. Then all of a sudden nothing for 2-1/2 yrs!! Hallelujah!! I seriously thought I had beaten the beast!! Then out of the blue, 4 weeks ago, it started again. Three very long weeks. Sucked but I thanked God for helping get thru it and got back to being me again.  :)

Then last night they came back with a vengeance! NOOOO!!! [smiley=bigcry.gif] It can't be happening again! My cycle is over!!  >:(  WHY?!?!? All morning I've been racking my poor, tired and aching brain trying to figure out what's happening... what's wrong with me... did I do something to make them come back?!?!  :-/  But after reading your message I've come to realize that it's not me... change just happens.

I won't pretend I'm not sad or upset, but I know I'll be ok. Just need a day to cry, breath, stop asking why and build up my strength for the days to come.  :-[

Thank you for being there and letting me vent! I feel better already!  ;)
Pray for me... I'll pray for all of you!

Welcome back to the board....don't you just HATE the unscheduled suprise cycles? :'( Do you have a decent regimen for dealing with them? A good preventative medication? A good abortive? Do you have oxygen yet?

Joe

Hi Guiseppi,
Was this question for me? If so, yes, I've ordered refills for my tanks and have asked my Dr. for a non-rebreather mask, but don't know if I'll get it. If not, I'll order one from CH tonight.

Other than 02 I don't use meds. I did at the beginning, when I was diagnosed years ago, but nothing really worked and I hated the side effects.

I'll be ok, it's just the uncertainty of what's to come and for how long that's frustrating me! I have lots of events and trips planned starting next week... too many things to do to be going thru this now... or ever!!  :-[

I know I'll work it out. Have to... just sucks!! I'm sick and tired of being sick and tired!!  [smiley=frown.gif] LOL!!!

Thanks for the concern.  :) I really am thankful that this site is here. It's comforting to know I'm not a lone alien.  ;)

Many use just the oxygen, glad to hear you've got it, it's still my silver bullet! But I hear you, when I'm in cycle...I'm just ready for it to be done! :(

Joe

Hello all...Newbie to this site; 25+ yrs of Eposodic headaches.
It's comforting to see that I am not the only person in the world that has had to suffer thru these headaches. Learning and researching about these CH's has helped a great deal. A sincere Thank You to those who have developed and cared for this site. It has changed my point of view and provided me with some real ammunition to show my doctor and others who have written me off as crazy. It's difficult, as I'm sure you all know, to speak to somebody who has never heard of a CH.....nobody knows what we go thru and they seem to think we are either crazy or needy. Once again, thanks so much!
 

I have a few questions regarding how my cycles have been occuring recently. For most of the time, it has been severe episodes once a night for about 4 weeks. Typically, they lasted about 90 to 120 mins, with some shadow time on each side of that. For the most part, I would be completely free of episodes for about 18 months between cycles. Prior to the current cycle I am in, it had been 3 years since the last cycle.
This cycle has been different..I started to get the shadow headaches about 2 months ago....a dizzy, disorienting feeling with some minor head pain. I was chasing this with my doctor as a sinus type issue- I had never had just the shadow type headaches without the full blown CH's. It became clear about 3 weeks ago that the beast had returned - after a 3 year vacation. After I finished crying, I went back to the Doc and got a script for Sumatriptan, 100mg. He also got me an O2 machine. The Sumitriptan works, it has limited some of the worst attacks to 30-40 mins rather than 2 hours....however, I am concerned about taking that much medication (the package info on the script even says that there have not been any studies regarding taking this medication longer than one week). I still have the meds, but have been relying on the O2 and only using the Sumatriptan in dire emergencies. My plan of attack lately has been the O2 and a bag of frozen vegtables on my head.
So this brings me to my question....for whatever reason, the attacks have become less severe but more frequent....forever, they were always very severe and only once in a 24 hr period. Now, there can be as many as 4 or five in a day, 2-3 hrs apart. The shadow headaches are also different; they have been almost constant - dizzy, disorienting, buzzing/ringing in the head- and a real pain in the ass.
I understand that the O2 machine I have is insufficient - I am currently getting the paperwork for a tank of O2, the non-rebreather mask and a higher LPM flow rate - and I hope that that will work better. I should also mention that while the attacks are more frequent, they are also less severe (maybe a 5 or 6 KIP rather than the normal 9 or 10) - prehaps from the O2. I am hoping that an O2 setup as described in this site will yeild better results, but I am greatly concerned about how things have changed this cycle...anybody have any thoughts on this? I dread to think that I could be looking at another month or two of shadows and attacks, but ANYTHING is better than the way they were before.
Thanks

Hello everyone.  I have been dealing with CH since I was about 18 but didnt seek medical help until my early - mid 20's (been a long time!!).  I have tried a lot of different treatments which may have worked for one episode then didnt work for the next.  I get my ch's around Sept and Oct then June or July every year and they last 1-2months(seems like more) I just started getting my ch's again the other day after 3 1/2 years.  I went on Lithium for them and it worked GREAT! However, my dumb doctor never check my Lithium levels after I reached my theraputic dose(suppose to be checked ever 3-6months at least) and I ended up in the hospital this March with Renal Failure due to Lithium Intoxication.  Now, I have been nothing but a downward circle with my health.  I can no long have lithium which was the only long term medication that has ever worked for me.  All I can take now is Imitrex injections which helps get rid of the headache within 15 minutes, but i can only take no more than 3 per day.  I get anywhere from 4-6 in one day.  So I have to suffer out the rest. My new neurologist just started me on Verapamil to take the place of the Lithium. I really hope it works.  I cant take this!!!  I am older now and just not able to handle it like I use to (which was not good then).  I have many health conditions now (5 new since the OD) and many meds.  So interactions is always a concern.  My husband tries to be simpathetic and give me my space when I need it, but I also have a 6yr old daughter who tries her hardest to help me, but also needs constant attention (the energizer bunny!!) and I feel bad that when I get these ch's I am so completely wiped out or in horrifying pain, I cant give her the attention she needs.  I guess I am looking to see how other people help deal with the ch's when they come on so I can try new ideas when I cant take my imitrex injections anymore in that 24hr period.  I don't log on every day, but I will try to log on at least 2-3 times per week.  Or you can email me, just put that your from ch in the subject.  Thank you for having this site and giving me the opportunity to join.  

Sorry to hear about the lithium issues. It's been my silver bullet as a prevent for many years now. You didn't mention oxygen. Read the oxygen info on the left side of the board. It's been a highly effective abortive for many, with none of the medical side effects we worry so much about.

My kids got to where they could help me rig up the regulators and get the bottle running for me. Made them feel a little less helpless towards the beast!

Joe

I am so happy to finally find a site like this! I started with CH two years ago now and have been treated for about a year and a half. So far nothing has really worked but it is really nice to have a place like this as a resource. :) I look forward to chatting with everyone and finding out as much as I can about treatment options and all of your stories. Glad I'm not alone in this...

Hello there - my name is stephanie i am 44years old i have CH.....its took over 20yrs to be diagnosed correctly - I found you now and thats all that matters.....i'm not alone x ;D :'( :P


24yrs i have been misdiagnosed - from the age of 20 i was treated for Chronic Sinusitis, gave up on all dr's & all medications age 26yrs & just put up with it. I have episodes 3 or 4 times a year,lasting 4-6wks before i get a final attack then they just disappear again but knowing they will come back. This year as been the worst i have ever had - i have had a attack every month & have only had 10days free before it all starts again - at times i'v wondered how i'v found the strength to carry on.....but its forced me to seek medical help again & at last i'v seen a specialist who as confirmed i have Cluster Headaches & i now will be trying the sumatriptan injections & other medications. Its a massive relief to know i'm not alone & there are other who understand the absolute agony these Clusters bring.....much worse than migraine,much worse than giving birth...the only way for anybody else to know is to have these Cluster headaches themselves & i wouldnt wish that on anyone. There is no cure...but i feel like a massive weight as been lifted off my shoulders - to be able to give my Russ, my children, my family a better understanding/knowledge ...not have to hide it no more.....i will never let russ or anyone be with me when i have the worst attack..... couldnt bear it, dont want to be seen - if anyone was with me i would feel i have to protect them from seeing me like this ....i couldnt cope
Deviated Septum - posh name for broken nose. My nose was broken when i was 14yrs old by my dear sister susan...never bothered me that i had and still do have wonky nose - no one's perfect Lol. This is what i'v blamed all these years for my Chronic Sinusitis (thats what i was diagnosed with) cant hardly breath on that side, always bunged up, have sleep apnoea - just put up with it....one of those things.Knew it wasnt migraines because as a little girl i used to have them & the pain is different and far far worse!!!l This year i have had so many infections that i agreed at last to a Septoplasty - was hanging in there praying that having my nose straightened would put a end to my agony. But i now know its not my bent nose causng this torture - i have Cluster Headaches & there's no cure.
I have long known painkillers DONT WORK - none of them....over the years i have looked into every alternative therapy you can imagine - i know all about herbals/essential oils/massage/hypnotherapy/meditation/exercise ect etc i could go - my last hope was having a Septoplasty. Though i am disappointed at least now at long last i know what it is - i can put a name to it - that i'm not alone. I will still be having my septum straightened some time next year which will sort the breathing on the left side & fingers crossed the sleep apnoea.
This is how it feels for me when i am having my worst attack....its like having three pneumatic drills all on full blast at the same time....one through my left eye - one coming through my neck & jaw going upwards and the third drill going through the top of my head at the back drilling down.....for three hours.....cant think, cant cry, just rock back wards & forwards holding a cold wet tea towel with one hand over my left side of my face, pressing onto my eye & cheek area - the other hand holds a tea towel over my mouth to cover the sounds of my agony....i pace up & down, roll on the floor in absolute agony, i go into the kitchen and pick up a knife, i roll the knife handle around & around in my hand wanting so badly just to cut the pain out...the tiny bit of sense i have left makes me put it back down and go back to rocking back wards & forwards. I repeat the above over & over again through out the 3hours - Times passes...3hours later the agony stops.
I have learnt NEVER to have many paracetamol or ibuprofen in the house because when its like above in my state of mind - even though i know they dont work i would take them all. I take a mega dose of Melatonin 30mg - i have to import it from America because its illegal over here & can only be got on prescription - its not a pain relieve - its a supplement to help you go into a deeper sleep, it helps me eventually by making me feel a little drowsy, a little out of it - but the agony never subsides that stays until the attack is over.
The one good thing about me finally going back to see a specialist is that now Russ knows - so do my children....it was nearly the end of me & russ 2wks ago, i was having a cluster starting on friday evening, ending on a sunday ...all day saturday i was on pain scale 7/8 in absolute agony - to russ i just had another sinus/cold but i was in extreme agony...didnt want sympathy, didnt want 2b mother cuddled, just wanted him to have a understanding to acknowledge - but he didnt see/didnt understand/didnt believe i guess the amount of pain i was in but then i guess i cant totally blame him because over the years i have become good at brushing it over....that night i had a 10+ attack....up all nite till 6.40am & i made the mistake of having painkillers in the cupboard (as i said above, i usually DONT but my kirst had been ill with throat infect so i brought them in for her) i took 10 paracetamol 10 ibuprofen 10 melatonin - why 10 i dont know, i guess subconsciously i knew 10 wouldnt kill me but i also knew they wouldnt touch the pain - just wanted not to there & away from the agony but it made no difference.
I have had many attacks like this,usually lasting 4-6wks before peaking then i would have 3/4 months free before the cycle starts again. Buit this year its been so much worse, being only 10 days free before another cycle begins - i'm just totally worn out. Usually i somehow find away to cope but this year as been so bad i'v nothing left, no strength left to hide from it no more - having my nose done was for me my final hope.....but it as helped knowing at long last what i have & now being able to talk about it to be able to show russ some videos of other cluster headache sufferers to give him knowledge/understanding a little to how very very very painful it is for me - i'm not a mardy person - i can take pain but there's only so much anyone can bare. My heart goes out to the Chronic suffers who get no painfree days....
So begins another chapter in my life....where my family now know...where fingers cross my episode as passed for now and i will be free of it for a few months but knowing it will return - and knowing this time i will have Sumatriptan injections to try & fingers crossed will help.
It will be difficult for me knowing that Russ & Kirsty will now know what i'm going through when i go down stairs at 1 -2 am in the morning and knowing that i dont want them there but we'l cross that bridge when we come to it!!!!

Hi Steph. It's good to meet you but I'm sorry it's related to this horror.

Before I go further, I truly hope you will try oxygen as an abortive. It's what has been so effective for so many. Others will give you some advice on this as no one was using it when I had my CH hits. I had my episodics for 23 years but when I reached 45, they began to disappear and have not come back. I'm now 63 and know just how fortunate I am. There is some evidence that age can be a factor but it's not proven.

Here is my posting of a technique that a neurologist showed me decades ago that made my life bearable most of the time. I hope it might work for you too:

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. 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 hand with redirected blood. The important part is that it has to be done without interruption until it has some effect. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately but it almost always worked after a time. 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 this 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.

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.

I hope this technique is helpful and I wish you the best of luck.

Charlie      

We are new today to this site.  My husband has been diagnosed with ch in the last few months.  He had this two years ago without diagnosis but it subsided.  He has now had ch since Sept. 17.  He has been hospitalized twice, given narcotics, had injections, took medications.  He has been unable to work since then.  It has taken such a toll on our life.  He has been bed ridden and lost 30 pounds.  ER more times than I can count.  I just had breast surgery in July and emergency laminectomy in August.  We are having a very hard time.  We have seen many drs without success.  Now on Depakote 2000 mg daily.  Also, blood work revealed low B12 and low folic acid.  Now on supplements for these.  How do people keep a job and deal with this?  Help!

Quote:

He has been bed ridden

Trucker, just for our benefit, could you please explain what you mean by he is bedridden and lost 30 pounds? 

I have been chronic for 22 years.  I have never been bed-ridden, nor lost any weight due to CH.  Has he got other medical problems that would account for this?  I know personally and have talked to hundreds of us with this condition.  No one takes to their bed because of CH.

We want to help.  That is why this site exists.  Please come back and add more to the story.  O.K.?

Linda

Sorry you needed to find us but welcome home!  All that post are going to want to know exactly what your husband is using in the way of prevents and abortives.  I see you just posted and are still on line so if you would like to PM me I will be glad to share all I know.

Wishing for some pain free time for ya'll

Dallas Denny

Since this cluster headache began on Sept 17 he has been hospitalized twice and due to the pain he cannot eat.  He eats only between headaches.  He is weak and pale and has been tested for everything this is the only thing that they can come up with to diagnose him with.  One doctor admitted that no one really new what it was or what caused it.  He has had EEG's, MRI's, MRA's.  The only relief that he has had is when they use the lidocaine for his steroid injections to his head.  He has had almost 40 injections in the time.  Many being Kenalog and lidocaine as soon as the lidocaine wears off the headache continues. It's like he is very very ill and in severe pain both day and night.

Thanks for the sweet welcome. This has been a scary road to haul. It started in July and has been almost constant since then. I have missed work, lost money, missed out on time with friends and family and because of eye drooping am starting to look a bit like Sandy Duncan doing a Wheat Thins add. It's great to know that there are people out there and hope to make some local friends that I can talk to about this and also get to know otherwise. Hope that everyone has a pain free night and that "the beast" can be kept at bay on Friday the 13th :D

Hi guys! I am so glad to have found this site! I first had the 'thing' in late August 2006. Like most, at first I had no idea what it was, it started waking me up, first once every other day in the first two weeks, and then, every day, two attacks minimum... It was hell... I thought it was something related to my jaw or teeth, since I used to wear braces... But I figured it couldn't be, since I kept wanting to pluck my right eye out...

My mom was devasted seeing me banging my head against the wall... I saw 4 different neurologists, and each one kept saying that it was a migraine, and kept prescribing me different drugs that had no effect whatsoever on the pain From what I saw here, the 'getting to know every neuro from you city' rounds are something that most of us have been through. The 5th neuro was the one that said Clusters, and gave me Prednisone, and then Verapamil...

The attacks stoped in November of that year, and when the Dr. said I could expect them to come back next year I coudn't believe it, this was insane! August of '07 came, and I was terrified, but nothing THANK GOD happened! Neither it did on '08. So I thought 'Hey, he must've been wrong! Maybe I had something else, and it's never coming back!!!'
August this year was also fine, no pain, I thought I was on the clear....

Until last sunday, I woke up with a jump from my bed, stopped in the hallway looking at my dad like I had seen a ghost. I couldn't freaking believe it!! The nail in my eye had return, next thing I knew, my head was banging against the wall again, why the hell did this had to happen again??? I hoped for an isolated incident, but wednesday it happened again, and today again...  >:(

In the time of my first attacks I used to think I was alone, like many have said it here, finding this site was amazing, getting all the tips, knowing that someone else understands and doesn't think that punching myself in the head whenever this 'thing' comes is crazy, and that I can't just calm down when it happens! Thanks for being here :'(

I am so happy to finally have someone to talk to about ch that actually understands. I have been suffering for 10 years and it morphs every year. The only constant i have is that I wake up with an attack at 2 am always!!! It usually lasts about an hour and it is unbearable. My only savior is prednisone. I have been using it for about 6 years now and it has done wonders.

I just want to say I understand what Trucker was saying about her husband, Because this last attack I had lasted 6 weeks and I was in bed or sofa for that time and could not eat because of the pain, I also had very bad jaw pain with this attack unlike the times before. I to spent two months in the hospital I thought I was having a stroke the day I went to the hospital it started on Friday just didn't feel good nothing like I had ever felt before didn't want to do anything by Friday night my head hurt so bad by Saturday I thought I was going to die but hung in there on Sunday I late after noon I told my husband to take me to the hospital the hole right side of my face was numb all I could think of was a stroke got to the hospital and the doc said I was not having a stroke and they kept me there 5 weeks running every test known to the doctor world cat scans, MRI's, X Rays, Electro shock, blood test, they left no stone unturned Thats when the Nero doc told me I had chronic cluster's. When I have a full on attack I can't even think about eating and I just want to be left alone no light no sound and my heating pad around my head I to lose wait when I have my full on attacks so I understand what trucker is saying.

Greetings, All!!

I'm Tim. Apparently, I've been a Cluster-Head since I was 15 or 16, or 20 years. I had seen a couple of doctors, and was prescribed Motrin. Obviously, that didn't work.

Finally, in June of 2006, my wife (Bless this woman!!) insisted I see another doctor, and was diagnosed with Episodic Clusters. He prescribed O2 and Imitrex. The Imitrex works VERY well, but was quite expensive.

So, after that episode with the Demon, I went until December of 2009 without any hint of a headache. Then, out of nowhere, they're back. I'm on the tail-end of my cycle, and for the most part, it's been pretty routine. Keeping my fingers crossed, and popping Imitrex like a mad-man.

So, I'm glad to have found you folks, and thankful that, as severe as my cycles are, it seems they could be even worse. Hard to imagine them being worse.

Anyway, pleased to meet you all, and I'll be around.

Tim

I'm new to this site.  Lots of good info.  I have suffered from cluster headaches since 1993, and get them every 2 years twice a day.  I keep hoping that once they end they will never come back. But once again I just started getting them again last week. Grrrrr.  Maybe one day I will out grow them.  Wishful thinking on my part. One thing that gets ride of my headaches is exercise.  When I feel a headache coming on I get my heart pumping fast, and im breathing heavy. (sometimes real heavy almost gasping)  for about 5-10 minutes, and then its almost like a pop, and the pain goes just as fast as it came.  This seems to work for me, and I find it better than all the crappy medicine I have tried. The only problem is it doesn't shorten the 1-2 months that they last and sometimes I sure don't feel like exercising in the middle of the night!

Hello
I am not sure if I am in the right place or not the doc seems so unsure of what to diagnois me with. This week it is cluster headaches last week tension headaches, I am so tired of having a this blasted headache. I am on wk 9 they have tried little drugs I suppose like anti depressents and sleep aid and oxycodone.
The last time in the emergancy room they tried the oxygene and i throw up on the nurse and boy did I feel childish. So they went to Morphine and an tummy settler thing (sorry cant think especially clear). I just want to know what is going on inside of my head so I can function day to day. How can I work when I have a constant headache and at night the pain get so intense always behind my left eye.
I just need relieve. :-/

my name is hayven williams and iam new to all this i have just began having theses headaches about 2 months ago and it has been  terrible i just would like to speak to some folks who have the same problems i have it is starting to wear me down already the e.r visits the not a very nice person doctors that dont believe me and the different meds its been quite a scary ride

Just a quick note to say I've been looking for a site like this for quite some time.  I was diagnosed apparently around June of 2009.  My wife (whom I have only the highest regard and love for) has been helping me with this situation.  I also have problems remembering things older than a few days and completely forget them after about a week or so.  Not sure if that's related or something else.  Anyway, I have 5 different doctors treating me for various things, but the major issue is the cluster migraines.  I'm still trying to find that miracle cure or preventative for it (which from everything I've read so far doesn't exist).  I'm on Depakote and Aricept to name a few, but I keep thinking there has to be something out there that would at least lessen the attacks when they happen.  The last time I felt like so many others, I just wanted to rip my head off my body and use a steam roller on it to stop the pain.  In any event, I try to deal as best I can, and hope I am not too much of a burden on my wife.  I think it hurts me more to know she has to see the outside of it when it happens than it does to actually be going through it.

Just glad to finally find some useful information.  I will be reading as much as I can in my spare time to "get caught up."   ;)

Thanks for being here.

Larry

wow.
first of all hi my name is rick i am 28 years old male and  ilive in australia. i and my father both have CH, i have had them since i was 17. my father since he was 23 he is now 52 we are both self diagnosed chronic sufferers.
I am repying to you, as this is my fisrt time on the message board, i wish to speak and communicate with other sufferers other than my father. i have been in need of some comfort knowing there are others out there with the same or even worse pain levels than me. i would also love to for this message to be replied to as i am in a current cylcle at its peak... sounds weird but i am writing this with a shadow of one that hit me last night for over 6 hours constant.
My wonderful caring and understanding partner doesnt like me to go on the computer when im in a currnt cycle as she believes anything makes me get them..computer screens, smoking, alcahol. but i just had to to it and sign up and register as a 'Custerhead' and just speaking to someone i know will help me understand that i have more inner strength inside me to deal with the 'whoppers' i have like last night. also just before i finish my post i have tried sumatriptan 25 and it does not work, i currently take no meds for my CH. thanks for your time in reading this
rick.

Hi. My name is Xavier. I'm a 31 year old forklift driver from Allentown Pa. My first bout with CH's was about 8 months ago. I had never heard of CH's prior to being diagnosed. The first time I had one I truly thought I was dieing. My wife called an ambulance and before they arrived it was gone. I get to he hospital and the nurses thought I just had a bad migraine and sent me on my way. They didn't even bother sending in a doctor to see me. Several hours later it hit me again. This time I called a neurologist. After two MRI's and a week of CH's twice a day I was finally diagnosed. They first tried oxygen therapy and that did absolutely nothing for me. Then I tried treximet 85mg tablets. It seemed to keep the headaches down to about 20-30 mins.

Anyway, the reason I found this website is b/c I just had my first CH in 8 months. I knew their was a good chance that it would return. But I had fooled myself into believing they wouldn't. I don't know if I can go through it again.  :'(...

The only thing that is giving me hope is that I just found out about the sumatriptan injections. I'm trying to get a hold of my neurologist through his answering service and I'm not having any luck.

I'm so scared.

Hi Xavier - welcome to the board. There's a TON of good information here, you'll be hard-pressed to find anything better than information from the experiences of other CH sufferers!

Imitrex is definately a great tool to abort. So is oxygen used effectively. You mentioned that you had tried that last cycle to no avail. Please review the info we have on this site specific to oxygen relative to high flow, non-rebreather mask. Most people also continue to breath for maybe 5 minutes or so past the abort.

There is a gathering planned in July in Atlanta of fellow CH sufferers and supporters. If you have interest in that please check the info listed under the Meetings & Gatherings page. My husband Guiseppi is a sufferer and meeting other people with CH was life-changing for him in how he could manage and cope with CH. The same is true of me as his supporter.

You've found friends here.

Christy

Hey Xavier,

The terror of this condition is well known 'round these parts, but with any luck, that will will be dissipating significantly for you and soon, because we'll be sharing very effective ways to beat or minimize the impact of this beast.

QueenHeart already set you on some good paths, I'll just add a bit here.

O2. It has to be administered right at onset, hence it's failure whenever anyone arrives at the ER with a full blown attack. There are guidelines in the oxygen info link to the left of this webpage that will greatly increase the effectiveness of your O2 use. You won't get this info from any doctor. With the exception of the occasional headache specialist, doctors (includiing rank and file neurologists) are unfortunately completely untrained, blithering, ignorant idiots when it comes to CH, and often do as much harm as good.

So a good strategy when taking the conventional med route is to use O2 as your first line abortive, and reserve the very powerful (and expensive) sumatriptan injections for your ace in the hole back up abortive if necessary. This imitrex tip is CRITCAL: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Preventatives. There are all manner of toxic drugs with real side effect risks that most of us here have used, many of us still do, but get this: lately it's become much too hard to ignore the fact that there is a non toxic, but illegal mushroom (psylocibyn) that when eaten in a small sub hallucinogenic dose, CH folks have been having tremendous success with, even to the point of knocking out entire cycles.

So promising in fact that this CH treatment has been covered recently in Newsweek, a National Geographic special, etc., and clinical trials are under way at Harvard Medical, etc.

I advise you to go directly to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE without passing go or collecting $200 to ask about it and research it there.

Here's a long but informative video on the subject:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

One more thing: Unfortunately very few of us responders will see this first post of yours in it's current location - I advise posting your topics directly in the "Getting To Know Ya" or other board topics sections.

Hang in there man - you're gonna get this under control.  8-)

this is fuk'd I'm trying to talk to somebody and i can't figure out how.  I'm having CH right now help me

So excited to find this site. :)

I don't know that what I have is cluster headaches or not. My dr also doesn't know. LOL- Story of my last 17 yrs as a person with this problem.. "no answer- never seen this before. Don't know what it could be. Your a medical mystery. " For today anyway- it's a cluster. Last week they determined that it was "atypical migraine with anomolies". The week before that they thought it possible it was an anyrusem.

Just left yet another neurologist appointment extremely disappointed. Today it's "cluster". Tomorrow they might decide it's something else. For now I'll go with cluster and figure out as much as I can like I do every time they peg me something.

For 17 yrs, at least 1 day a week, my left eye gets stuck, up and out, causing such intense pain that I will sometimes blackout/ pass out. This will happen at least 1 day a week and will cycle. I'll have it happen for about 1-2 hrs at a time, off and on, through out a 24 hr period. My vision will become double, I will barely be able to stand, walking is a rollercoaster nightmare and forget driving. My pupil in that eye also dilates. At times, this will actually wake me out of my sleep (usually a couple times a month). If I lay flat, I literally think I'm going to die. As a matter of fact I become convinced that this is it, my head will bust. I've tried all the traditional migraine meds as at first they thought it was migraine. I've tried oxygen and that didn't work (although after reading this site I realize that it was done incorrectly and that could be why it didn't work). I've been on antiseizures. Stupamax, depadope etc. I've tried massage, pain meds (do nothing at all no matter how strong), hypnosis, meditation, herbs, vitamins, diet, exercise. I've been to Johns Hopkin Bayview Headache center, a headache center in Northern VA and last but not least, Jefferson Headache Center in Philly. Probably at least 7 neurologists over the years, ENTs, Opthmologists, NeuroOpthamologists- All of them shake their head and say "you know I don't know- never seen anything like this".

At this point, I'm not sure that I'll ever get an answer. One day perhaps my head will explode and then maybe they can finally figure out exactly what it was that caused it. Either way, I'm thinking maybe some support is in order. It looks obvious from reading the other posts that whatever my problem is and whatever everyone has on this board the one thing in common is that its a pain to get it diagnosised properly.

If anyone is interested in seeing a picture of my problem, please message me or email me and I'll be happy to provide.

:D

First off you might want to repost this under the getting to know you tab as it's likely many more will see it. A bunch of us just got back fro the convention in Atlanta so we haven't been around!

02 might be worth revisiting. Doctors do not understand how we use 02, assuming we're trying to raise our 02 levels...we're not....so they use re breather masks, nasal canulas, low flow rates, all about guarantee failure.

The keys are a Non Re Breather Mask...the optimask by life gas is one of the better ones......a high flow regulator of at LEAST 15 lpm, preferably one that can go to 25. And you must get on it as soon as you feel the attack building.

And I couldn't agree more, headache pain sucks. Hoping you can get relief soon.

Joe

I am a 30 year old male and this is my first day on the site.  I found this site while searching for information.  I started my headaches 2 1/2 years ago.  They were full force for 6 months and just as suddenly as they had come, were gone.  I still remember the pain so vividly that here I am searching for knowledge all this time later.  I can't imagine the people I'm reading about on here that suffer with these for many years.  I dread the thought that these are going to come back, which I know they can.  I think this community is a great place and am thankful that it's here.

Big Mike wrote on Jul 22^nd, 2010 at 8:10pm:

I think this community is a great place and am thankful that it's here.

That's why we're here, Mike, and we'll help you every inch of the way. Welcome aboard.

Mike welcome to the board. Statistically speaking....yes...they'll come back. Do you have oxygen prescribed yet? Imitrex injectables? A good prevent set up like verapamil, lithium or topomax?

Now is the time to do your footwork and find a good headache neuro or a GP who will listen to you. Once the cycle starts you're too damned busy head banging to help yourself.

Danged glad you found us, welcome to the club no one wants to belong to! ;D

Joe

I guess you could say that I am an Old Newbie.. Husband has clusters, and has been in remission for 10 years.  It was wonderful.  Then, the beast showed up again in the past week, right now every two days early in the morning.  Imitrex works for him, but all that we have right now is out of date. Still works! I only give a small amt to achieve results. So good to have this family for support. You guys are awesome.

Yeah, I've used expired imitrex and it's always worked for me too. Have you guys tried the oxygen route yet? It's all but eliminated the imitrex for me. Just as fast and no "imitrex hangover!" Just finished an 8  month cycle and only had to resort to the trex about 4 times. Read the oxygen info link on the left for the nuts and bolts of it.

Thanks for being a kick a$$ supporter and doing the footwork for him. My wifey found the old CH site many years ago and saved my sanity! We're awfully fond of our supporters around here! [smiley=hug.gif]

Joe

hello everyone,

i am new to this site, my name is Kini. I have had CH for about five years. im 23 years old and looking foward to having many conversitations with all of you.

Hey Kini,

Glad you made it here.  :)

Hey Joe...Looks like KINI is in S.D.    ;) 

On it!!!

Joe

Hello! My name is ryan i must be mildly retarded cause i cant figure this site out. how to post messages and talk with others?

Hi Ryan, look for a little button on the right above the posts on the message board that says "start new topic"

Good luck!

Hi everyone,
This is my first post and I've got so much to tell I'll probably need to do it over several posts as I'll forget a lot to include in this post.

I've had CH for 28 years. I didn't have it diagnosed correctly until around 10 years ago. After trying several combination's of drugs/therapies I finally got onto the one that works for me. I am very lucky that I am a veteran and get my meds cheap. I had no idea that Imitrex was so expensive!

It was 4 years ago when I finally got this treatment:
Oxygen, Imitrex and lots of water. (4 years ago I only needed to do this twice as I was towards the end of my cycle - more on this later).

Typically, before my current routine, as soon as a headache would come on (wake me out of a deep sleep) I would be one of the small percent who would get nauseous. I'd run to the toilet and vomit. I'd leave all lights off as it would shoot lasers through my brain. Next step, get into the bath tub and put my head under the faucet with as cold as it would get and writhe in pain. If it came during the day I would get a towel drenched and grab a few bags of vegetables out of the freezer. One bag at the base of my skull where it meets the neck and the other over my eye. Then wrap the towel around my head and cry and trash like an epileptic baby. I had a technique that could calm the savage beast but as soon as I stopped it would be back with a vengeance. I would grab the back of my neck and squeeze as tight as I could. Right below the lump that we all know about. If I squeezed it hard enough it would work somewhat, never fully but ANY relief is a god send. Another thing that I would do that I have never heard of anyone do but for some reason it helped me - I would drink two or three shot glasses full of Balsamic vinegar. I don't remember who told me about it or if I just came upon this on my own but it seemed to help. Maybe it was just coincidental but I still did it.

I did the above for many years until I got the Imitrex and only needed to do it twice during that cycle (4 years ago) and I was fine again. I travel a lot and luckily I had not had any episodes while traveling. Then I hit the most horrible time of my life. I was in Bangladesh and got food poisoning. After about 2 weeks of feeling like I was on my deathbed I could feel the telltale signs that the beast was going to attack soon. I only had 2 Imitrex inhalers with me and I was scheduled to be traveling for at least another month, in Pakistan. I recovered from the food poisoning and the CH had not hit yet and I was hoping that the change of weather might keep my CH away. Nope. It hit with such ferocity I prayed for the sweet kiss of death in my sleep, when I could sleep. I had some very slight relief from Valium, hashish and Ritilin. There was no place to buy Imitrex anywhere that I could find. I was getting two massages a day that gave me some very slight relief. Finally my month in Pakistan was over and on a few days of leave in Dubai I was able to find Imitrex inhalers. At this point my headaches were so severe the inhalers did nothing to help. As I travel in so many countries I am blessed with many friends of many professions. I called a friend in Slovakia who is a brain and spine specialist. She called her friends to get advice and they found a clinic that specialized in CH.

At this point money was no object. I'd cut off a foot for some relief. I got on the next series of planes to Slovakia and had an appointment for the same day. What a blessing to have specialists that knew the pain I was in and how to treat me.

First, I got a series of either lidocaine or novocaine shots in several places in the face and neck. Then I got a morphine and herbal infusion. This is where you sit in a chair and have a catheter shoved into your arm with the bag in the air. It took about 20 minutes for the whole bad to get into me. Then I got a 20 minute massage of the shoulders, neck, head and face. I felt a bit dazed from the meds and massage but my dear friend helped me through every step.

I was scheduled for two more visits, one day on and one day off so that the treatment actually took 5 days. The first day after my treatment, I got another CH but it was not nearly as severe. The second day I got two that were horrible and I was losing faith. The third day I got another treatment. Day 4 I got another two CH but very mild. Day 5 I got my last treatment and some meds to take home. I still have one of them but can't find it. The meds were Tramadol 100mg slow release, which was to be taken twice a day, 12 hours apart. The other medicine I don't remember but I have the vial somewhere. It was liquid drops of some sort and I really can't remember what it tasted like. But,,,, I was cured. I mean REALLY CURED! I had 3 full years of ZERO CH! The quality of my life had greatly improved and I thought that this would go on forever.

Sadly, about 1 month ago I felt it creeping up. I thought it was impossible for it to happen again, prayed that it could not happen. Well, I'm finding this forum now so you can guess that it did happen. It's been about two weeks now of 2 or 3 per night. I'm back on the Imitrix, Oxygen and lots of water treatment. I also do the frozen veggies to the head too. It seems that this bout with them is much worse than ever before. Suicidally worse. I'll be seeing my neurologist next week who has agreed to try the novocain/lidocaine shots to my face and neck but won't give me any infusions. I am really hoping this will work. If it doesn't, I am flying to Slovakia. I can in no way afford this but, as anyone of you know, money has absolutely no meaning when you hurt this bad. I will cash in a CD at a loss to come up with the money. I am so exhausted and depressed and hurting that I can barely function through a day. I don't feel I have any other options. I don't think I'm as strong as many of the people I've read about on this forum. I simply CAN NOT go through this again.

There is a lot more to tell but that's probably enough for my introduction. Theories on why this started, illegal drug use (probably not appropriate for this forum), acupuncture, massage, herbs, chiropractic etc.

I'm glad I found this group. I hope I haven't turned anyone off with my rambling on.

Peace

welcome!

I sure hope you get some relief, keep us posted, but start it on a new thread, more folks are apt to notice it that way!

Welcome to the board Ow, a couple of things. I don't understand the treatment that helped you but there are a boatload of things I do not understand. ;) And be careful with the word CURE! Means you'll never have another CH. If you truly have CH, only the pearly gates are a complete CURE! :) Let me add some weapons to your arsenal while you're in the states.

1: A decent prevent medication. A med you take daily, while in cycle, to reduce the number and intensity of your hits. I use Lithium at 1200 mg a day. You can't tell I'm taking it and after about 10-14 days on it it'll block 60-70% of my attacks. Verapamil is the typical first round prevent, used at levels higher then most docs are used to, as high as 960 mg  a day, many use Topomax. There are some who combine the verapamil and lithium to get relief.

2: Visit   clusterbusters.com    alternative treatments outside of mainstream medicine that are showing some incredible results.

3: Read the oxygen info tab on the left. HOW you use oxygen is critical to how fast you abort the attacks. My aborts are running 6-8 minutes. The keys, high flow rate, at least 15 LPM, Non Re Breather Mask, get on it at the first sign of an attack.

When you get a chance, post an intro post on the getting to know you page, more people will see you down there!

Joe

Welcome OW! 
There is a ton of info. here, read all you can and you may learn something that will help you help your Doc treat your CH!

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I started with CH in June of this year.  The worst of the headaches seem to have past, but I have daily headaches that just won't go away.  They are still one sided, I usually end up rocking in my recliner for hours.  Maxalt doesn't seem to help.  I like packing my head in ice and that seems to help, but I feel like I am freezing my hair and it sticks to the ice bag and then I notice that it seems to break off at the scalp.  Losing hair I guess is a small price to pay for a brief relief of the nagging pain.  I have a couple of questions. 
Do all CH suffers smoke?
Can I fly?
I think I might be having shadows but at times the pain is more like a 3 or 4 on the kip.  Are they still called shadows at that level of pain?
I have many daytime headaches, is that normal for CH?

Looking forward to reading your responses.
God Bless
Pinogranny

pinogranny wrote on Nov 8^th, 2010 at 8:19am:

I started with CH in June of this year.  The worst of the headaches seem to have past, but I have daily headaches that just won't go away.  They are still one sided, I usually end up rocking in my recliner for hours.  Maxalt doesn't seem to help.  I like packing my head in ice and that seems to help, but I feel like I am freezing my hair and it sticks to the ice bag and then I notice that it seems to break off at the scalp.  Losing hair I guess is a small price to pay for a brief relief of the nagging pain.  I have a couple of questions.  Do all CH suffers smoke? Can I fly? I think I might be having shadows but at times the pain is more like a 3 or 4 on the kip.  Are they still called shadows at that level of pain? I have many daytime headaches, is that normal for CH? Looking forward to reading your responses. God Bless Pinogranny

You really need to see a headache specialist and get a diagnosis.

                Potter

Hi Pinogranny, so glad you found us! Sorry to hear you are still having trouble with shadows. Can you start a new post and run through your symptoms, when you were diagnosed, and what meds you are on so we can all weigh in to try to help? There are so many things to try for this, and so much support out there for you, hang in there!

Really quick, many here have been helped by drinking a Red Bull at the start of a headache. The taurine in it specifically is what seems to do the trick. Also O2 O2 O2, my goodness what a difference high flow rate O2 can have! Lots of good info to be had on that, I'd suggest starting at the yellow Oxygen Info tab on the left of the screen.

Hi, pinogranny.

At that level, I'd call them pretty fair shadows.  Especially if they're nagging and persistent.  Do you use oxygen to abort your headaches?  If so, you might try killing the shadows that way.  An energy drink with at least 1000 mg of taurine may be helpful.  I find that 8 mg. of the over-the-counter antihistamine, chlorpheneramine maleate along with regular aspirin can kill a persistent shadow--although in fairness, I have to say I haven't run into anyone else that this is helpful for.

It's difficult to justify dragging out the big guns to execute a lingering shadow, so I understand your frustration. 

The ice is a good trick, all right, but I have to say the tinkling fall of deciduous, frozen hair would distract me.   ;)


pinogranny wrote on Nov 8^th, 2010 at 8:19am:

I have a couple of questions.  Do all CH suffers smoke? Can I fly?

A high proportion of CH'rs smoke, but by no means all of them.  Some have never smoked.  Some started with CH long before they began smoking.

I'm relatively sure you can still fly if you could fly before the CH began.  CH has no known effect on the ability to fly.

Hope you'll consider posting in the "Getting to Know Ya" section below.  Most of us tend to monitor that area more closely, and you're liable to hear from more people.

Welcome, and all the best,

George

Hey Pino, welcome to the board! A LOT of CH'ers smoke, but many of us, myself included, do not. Some get only night time attacks, some only daytime, most have both. Flying is a trigger for some while in cycle.

Have you been to a headache specialist neuro? Headaches are complicated affairs, CH is rare, so a headche specialist is critical to an accurate diagnosis, and an effective treatment regimen.

For now, start a diary, when the attacks begin, how fast they build, how high they build, how long they stay at peak, how fast they go away. Describe the pain itself, any side symptoms that come with the attacks, any triggers you have identified, what meds have and haven't worked for you. The more details the better.

Praying you get relief soon, headaches suck, :'(

Joe

wrote on Jul 7^th, 2008 at 11:04am:

ninja mom wrote on Jul 5th, 2008 at 1:00am:  I prefer the term cluster warriors ,myself. 8-) I think that would make a great T-shirt!! Great post Jenn!!  Welcome newbies!!  Read all the info, ask questions, and make yourself at home.   :) Beth

Hey everyone! Umm I was diagnosed with Clusters when I was 10 or 11, and over the years I have discovered that sitting in the shower with the water scorching hot helps make the pain a little more tolerable until it goes away. I've taken everything from Prednizone to Maxalt (which is just a really gross breath mint in my opinion) and nothing works for me. I HATE these stupid things.. they seem to have gotten worse over the years too, I don't remember feeling like my skull was breaking open when I was a kid...
I'm glad there is a place like this where I can talk to someone else with the same experience. Most people just don't understand how much pain I'm really in and it gets extreamly frustrating!

Welcome to the board Cayce, have you had a chance to work with a headache specialist neurologist? There are a lot of effective treatments available, but HOW you use the meds is as important as what meds you use. Most of the prevents we use, lithium, verapamil, etc., take a couple of weeks to show a benefit, which is why it's critical to work with a headache specialist who understands how important it is to move slowly with the treatment plans. Imitrex injectables and nasal sprays are a fast, effective abort for many, the pills generally work too slowly for CH'ers.

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You didn't mention oxygen. 33 year sufferer here and NOTHING touches oxygen for speed, effectiveness, cost and lack of side effects. I feel the familiar tension and tingle start in my neck, ear and right eye, the pain starts, I start huffing oxygen, 6-8 minutes later I'm pain free. Please read the link and discuss it with your doc. Glad you found us, let's help you hurt a little bit less.

Joe

Hey Joe!
Thank you for the info, I have had an MRI and been given a lot of medications but never tried Lithium or O2. My guess is because most of my doctor visits were when I was a kid and I have just given up since then because I've convinced myself, at some point, that going to the doctor for it is just a waste of time and money because nothing is working. I really can't say I've taken anything long enough for it to work, I guess it's just one of those things where if it's not working right away I don't see a point in getting all drugged up for nothing ya know!? How much does the O2 cost and where can I get it?? I would LOVE to try it during my next cycle! As soon as my insurance kicks in, I planned on talking to my doctor about more options available and it is SOOO awesome that you guys are here cause I never would have known about anything other than what they have tried for me.
I did want to share something though. My grandfather had these his whole life and once he had a heart attack and they put him on blood pressure meds he said the clusters stopped completely! I dunno if that information can do anyone here justice, but ya never know!   

I suspect the blood pressure med your grandpa used was Verapamil, the most common first line preventative med used for CH. 02 requires a prescription from your doc, another reason to read the link as it has the wording the doc will need to use to get you the right set up. Some insurances cover it, some do not. If you have to cover all the costs, it's still dirt cheap. An E-Tank will cost you less then $5 a month to rent, the regulators can be rented for a couple bucks a month, or bought off of E-Bay for $20 or so. Refills on the E-Tanks run less then $15. I get 4-6 aborts per E-Tank so you can see it's not expensive. Its all available thru a med supply store, APRIA, LINDECARE, are just a couple of commonly used services.

Joe

  I went into the hospital last month . I had some serious  health concerns unrelated to him(beast) .They admit me, send me upstairs and I start getting shadows. I'm thinking this isn't happening. I figure I'm pushing to try my first true O2 therapy . Being a 20 plus year prisoner I'm now somewhat surprised at the improved knowledge among the medical staff about our nightmare. When the shadows persisted I told them I needed my Imetrex. Most had no clue what it was! I spent over an hour explaining to a very attentive nurse one fact that we all know. We know  more about our affliction then most of the Dr's we are sitting in front of. I have a lap top and come back to our site.
A banana is pictured it says don't take a bite
I ate my first 2 bananas in 20 years In the hospital.

The nurse I talked to who was so concerned , I asked him If I bored him and he told me that it was very enlightening. He also had some knowledge of o2 therapy for us. He knew pressures and masks. O2 was incredible!!! 6 Mins and pain free. And so is the cost why don't they give it to me!

I wrote this poem about 6 years ago but I wanted to share it again. I lost it in my PC file. I hope you can relate.

               THE BAD UNCLE

He let me know he was coming, many days before
And when he showed up, he slipped in the door
He visits at night, by the side of my bed
He's cunning and sly, he gets into my head

The wife and the kids, they run for the hills
Others feel sorry, and offer me pills
I know they mean well, but pills are no good
By the time they kick in, he's gone from the hood

He likes chocolate, nuts, and beer they all say
I avoid like the plague, but he comes anyway
O2, caffeine, it's said they all work
But I'll try something new, just on a quirk

My son asks me "Daddy, why do you cry?"
It's not so bad really, it's only one eye
Besides who has two colors, right on his head
One side is white, the other all red

But I found something here, on these pages within
It seems I have many, new next of kin
Who suffer like I do, and share what they know
And wish that the beast, would just get up and go

So scared like a child, that he's under the bed
We creep under the covers, it's sleep that we dread
We must rise up and fight, with all the strength we can muster
And rid from our lives, this bad Uncle Cluster

Here is wishing ya all PAIN FREE DAYS,its been great to load up with knowledge,and to meet ya all.So i find i am not the only alien on this planet.
Take Care

I have just been diagnosed with CH. They have been going on this time since June 28th. Had them 4 years ago and was tolled then it was a sinus infection. Got a good Nero doc all test clear Just have CH. Found this form looking fo advice. And glad to find it.

But lost info on ButterBur.  Looking not to take so many meds. Thanks for any help.

Should have told ya. I get three to four attacks per day. Four years ago was not as bad as this go around. I am open to anything that will help. I am on Verapamil and Imatrek 100mg Have found that taking Imatrex and 600mg of ibuprofin with a energy drink knocks it out quick. Thought just energy drink was going to break cycle as I went two and half days with out headache, but came back last night.   I am taking one fever few tablet each morning with verapamil.  The energy drink did or does seem to help. But hoping that I am getting to the end of this cycle.
But still hoping to learn as much as I can.. Thanks

Hi Rustystp

It sounds like you are using imitrex 100mg tablets to abort your CHs. These normally take about 20 minutes to take effect, which is too long for a CH. The injectable form works a lot quicker, taking perhaps 5 minutes, however oxygen is equally as quick and has no side effect plus it's cheaper too.

I'd skip taking the ibuprofen as this will not touch the pain of a CH and it could be giving you rebound headaches.

What dose of verapamil are you taking?

Are you working with a headache specialist?

Hello to all the cluster warriors out there.  I have been suffering from these for the last 7 years and have been thrown every pain drug in the book at me to no avail (as we all know), and just got an attack while on vacation in Europe. Let me tell you, CH+youth hostels in Amsterdam is a HORRIBLE experience. I saw two dutch doctors and was prescribed imigran pills. These did not act quickly enough to do any good. When I got to Berlin, by some miracle (and a very good friends help) I managed to find a pain specialist.  For the first time in 7 years I felt like I was talking to someone who truly understood this condition thoroughly.  He immediately prescribed me imigran nasal spray as well as prescribed some injections in case of emergency.  I was switched from propranylol to verapamil, and he was horrified when I told him about the meds I had been prescribed in the past 7 years.  He said that here in Germany doctors can be taken to court for prescribing sumatriptan pills to CH sufferers, because they are not fast acting enough to cause any relief, and thus cause unnecessary pain and suffering to the patient. Here they consider CH as a medical emergency as serious as a patient having a heart attack. I have been researching this condition more and more and I had never realized how rare it was, which is why so few doctors know how to treat it properly.  I feel like I have gained much more knowledge about this condition now and am equipped with the correct meds to battle it in the future. 
That said, I am concerned about going to back home to Toronto in a few weeks and trying to find a specialist who will take this condition seriously and prescribe me the correct medication. I had never even heard mention of sumatriptan, or verapamil until I came on this trip, and I have been to several GPs, and had never even been referred to a neurologist.  I thought I would join this forum today because I think that having the support of people that really and truly understand what it is like to live with CH will be very important to me in the long term. 

question. Because this condition can and is often taken as drug seeking behaviour or misdiagnosed, are there medic alert bracelets or some kind of documentation that we are able to get to identify ourselves as having this very rare condition?

Welcome to the board, Ignorance of our condition is sadly way too common. Here's a link to a listing of doctors in Canada who have treated CH'ers. Any of these close to you?

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JOe

im so thankful to find this tonight, i havent been thinking properly for a long time. iv gotten strength from reading all your stuff. today has been by far the worst day of my life. CH non stop...they never fully went away only for them to come back...im scared to go to bed tonight and bad thoughts are always creeping ...i feel very claustophobic at the moment and im tired...iv slept like 20 hours this week...i literally feel like iv hit rock bottom...im in my fourth year now with CH, but only got diagnosed this year...they always used to tell me migraine, im getting panic attacks just thinking a bad spell will hit me again...i generally have like 2 a day, but today one just didnt go away...i feel lifeless and pathetic.
everything irritates me...noise, light, thinking, speaking, friends trying to support me...and i feel bad.

but reading your stuff made feel a bit stronger, like "I can do it".... and i need to find patience

the only thing that sometimes works for me, as non of the meds do...is an extrememly hot shower to the point i feel like passing out...which generally happens when i get out and lie on the bed. is this good or bad?

zane wrote on Feb 15^th, 2013 at 8:24pm:

the only thing that sometimes works for me, as non of the meds do...is an extrememly hot shower to the point i feel like passing out...which generally happens when i get out and lie on the bed. is this good or bad?

Hi Zane, I regret to read of your cluster headache and the frustration you are feeling. You mentioned reading the pages here and feeling a new level of support, and that could be your first step but you have many more to take. But let me comment about hot showers. I do them, not always, but I do find that hot showers can be just one more trick in my bag at dealing with a stubborn attack. I could not say that a hot shower alone aborts a headache, but it seems to help tolerate them better and I have a friend who swears they are a vital part of his routine to abort the headache. So, no, it isn't bad. Of course, just be careful not to scald yourself or to slip and fall. On the occasion my headaches ramp up to a higher level of pain (KIP scale) I sometimes feel disoriented and slightly out of balance. If I decide to get into a hot shower I'll call my wife to ask that she be close in case I should have a fall. If she isn't there, I'll opt for a hot towel which I hold over that side of my head like a compress. I simply toss it into a microwave for 15 seconds to reheat it. (Be careful, even at 15 secs it can be very hot and require a wave or two of the towel in the air before I can refold and apply it (like a compress).

I want to urge you to provide the board with more information about your headaches. You said that the hot showers were the only thing that seemed to help. Can you share with us what other meds or methods you have used? Have you found the wealth of information here that discusses various therapies? I am certain that you will find excellent advice and ideas for  an actionable plan to begin taking your life back. Work with the board a bit.

Welcome to the board Zane. What part of the world do you hail from? WE need to get you to a doc who knows how to treat these things. Just riding them out with hot showers is unacceptable! :'(

Joe

Hey!
After reading a lot of stories here and understanding more about cluster headaches I feel much better. I've actually had a coworker say that my pain threshold must be very low if I cry from o simple migraine...
Last fall I woke up screaming in more agony than I had ever been in before. So I was rushed to the hospital where they thought I was having a stroke. (I'm 19) That turned out to not be it but they kept me for observation and the next day I woke up screaming again. They had no idea what they were dealing with.
So they sent me to the neurologist. He suspected cluster headaches but he didn't want to diagnose me until i had had it for a while so I was sent home with Citodon(I in Sweden so I'm not sure you have the same medication there but it's 500mg paracetamol and 30mg codeine) And verapramil (not sure how to spell it  :P)
   

Welcome to the board Eric. The paion killers tell me your doc is NOT up to date on the treatment of CH. Short of knocking you out, pain killers just won't help with CH.

FIRST and MOST IMPORTANTLY

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

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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 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

So all that follows will be worthless I hope……….but still…treating CH is a bit more complex then taking a pill to get rid of your headache. It takes an organized approach, I used a 3 prong approach in the past, haven't needed it since starting the D-3 regimen above.....many have had success using a similar approach.

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, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief. You mentioned verapamil, we tend to take it at doses much higher then most docs are used to. Some have to go as high as 960 mg a day 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.

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

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

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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.


For now, get some energy drinks. 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

Ok, that sucks..
As i understand it I should take the pills every day to prevent the attacks or?
I've tried 02 but it didn't help me while i had an attack and I'm allergic to triptanes. So painkillers isn't an option, what else is?

Start the D-3 regimen right away. If it works...and for most of us it does, it'll be a daily regimen for the rest of your life. Compared to everything I had to do to fight the beast for the 30 years before this regimen came along...it's a walk in the park! ;)

Joe

Sounds great! I'll start tomorrow :)

Erikpvb wrote on Feb 21^st, 2013 at 2:19pm:

As i understand it I should take the pills every day to prevent the attacks or? I've tried 02 but it didn't help me while i had an attack and I'm allergic to triptanes. So painkillers isn't an option, what else is?

Yes, taking a preventive every day can stop you getting a lot of your CHs.

Whilst you've tried oxygen, did you use a non-rebreather mask? Did you use a high flow rate, at least 15 lpm, preferably higher?

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Yes its was a non rebreather mask. Started at 15 and it didn't work so the doctor raised it (not sure how high) and that didn't help either so he stopped.

Hello All,
I was just diagnosed yesterday with CH which is the first hope I've had in months.  I got to the point that I called a suicide prevention line in between attacks.  I'm a 47 yr old  former 47 Marine and Law Enforcement type and I'm supposed to be tough. But I would end up in the fetal position praying for death and begging my wife in tears to do something...anything.  I just wanted to introduce myself and thank the owners and mods of this site for having it here.  I have sooooo many questions but as I said between being diagnosed and finding this site I now have HOPE!  I'm sure most of you understand how amazing that is!  From the bottom of my heart, THANK YOU ALL!  Now I'm off to get educated.

Hi Semper Fi and welcome!

Getting through the time between when CHs start and when you first get diagnosed and treated effectively is really, really tough. But with a good headache specialist and the right treatment the results can be amazing.

What I'd do is to make a new topic in this area and post more about yourself, where you're located and what treatment you're getting. Then we'll be able to make some suggestions on how to improve things even more.

And also use it to ask lots and lots of questions. Everyone here knows CH firsthand, so we've a perfect understanding of what you're going through. There are also military, ex-military and ex-law enforcement people here too, so they will perfectly understand those areas too.

Do keep reading too, this place is a gold mine for learning about CH.

Welcome to the board Semper! Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for  over 35years, they haven’t killed me yet! You need an organized approach to managing them so they 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 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

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, 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.

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. I just retired as a patrol sergeant after a 30 year career in law enforcement. I kept an E-tank in my cruiser on cycle. I'd sign off for a break, huff 02 for 10 minutes, and be 10-8 again. It works that well.  Read this link as it must be used correctly or it will not work

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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.


For now, get some energy drinks. 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

OORAH !!!

Welcome aboard Marine and thank you for your service !!!  You've come to the right place...  Lots of old Salts, Marines, Black-shoes, Brown-shoes, Tail Hookers, USAF Zoomies, BUF drivers Grunts and Coast Toasties here at CH.com.   We know what you're going through and we also know it doesn't need to be that way...  We're here to help.

There's a lot of good gouge on this site on how to frag the mother of all headaches over the side for a float-check... and some effective methods to keep it clear of the freeboard, out of the welldeck and out of your head...

There's no such thing as a dumb question when it comes to cluster headaches...  so when you have a question...  just ask.

Take care,

V/R, Batch

Hello to everyone from a newbie -

I'm a 59 year old male in Conover NC (north of Charlotte) who was diagnosed two weeks ago with CH. The problem is, I'm not sure the diagnosis is correct.

I've had a long history of daily/weekly headaches that are tolerable and have had a headache since Jan 24, with three severe episodes in that time. Two were triggered by a glass of wine, the other occurred during the night - early morning hours. This has never occurred before.

The neurologist doc put me on vitramil three times a day as a preventive, and imitrex tablets and injections in the event of an attack. I haven't had another attack, but the tolerable headache doesn't go away either, so I'm questioning if I have CH. It's all localized on one side, tender scalp, pain in temple and behind eye and top of head. But I can, and have lived with it. The doc even suggested I take an imitrex for my daily headache, which while it reduces it, does not make it go away. The next day it's another minimal to moderate headache.

Does this sound normal for CH, or did the doc miss this one? My wife is reading about other conditions that are confused like Hemicrania Continua, which seems more like the symptoms I have. Bottom line is, since I'm staying away from wine I have not had an attack, but my headache never goes away either -- but it's manageable and doesn't limit my activities. Reading what everyone else in this forum group is suffering with (and God bless you!) I don't suffer at all except for those three attacks, which were tough.

Thanks for any input, suggestions or guidance.

It's impossible for us to give you a diagnosis. You really need to be working with a headache specialist as this is a very complex area with a large number of headache types and people can have multiple headache types too.

For medication it sounds like you've got verapamil as a preventive which is a good start. Imitrex tablets aren't too good for a CH but the injections work well. Have you asked about oxygen as that is good for killing CHs off quick.

The background pain could be what we call shadows, which are like low level CHs.

But do work with a headache specialist to ensure you have the correct diagnosis and treatments.

rsilber wrote on Mar 2^nd, 2013 at 5:03pm:

Hello to everyone from a newbie - I'm a 59 year old male in Conover NC (north of Charlotte) who was diagnosed two weeks ago with CH. The problem is, I'm not sure the diagnosis is correct. I've had a long history of daily/weekly headaches that are tolerable and have had a headache since Jan 24, with three severe episodes in that time. Two were triggered by a glass of wine, the other occurred during the night - early morning hours. This has never occurred before. The neurologist doc put me on vitramil three times a day as a preventive, and imitrex tablets and injections in the event of an attack. I haven't had another attack, but the tolerable headache doesn't go away either, so I'm questioning if I have CH. It's all localized on one side, tender scalp, pain in temple and behind eye and top of head. But I can, and have lived with it. The doc even suggested I take an imitrex for my daily headache, which while it reduces it, does not make it go away. The next day it's another minimal to moderate headache. Does this sound normal for CH, or did the doc miss this one? My wife is reading about other conditions that are confused like Hemicrania Continua, which seems more like the symptoms I have. Bottom line is, since I'm staying away from wine I have not had an attack, but my headache never goes away either -- but it's manageable and doesn't limit my activities. Reading what everyone else in this forum group is suffering with (and God bless you!) I don't suffer at all except for those three attacks, which were tough. Thanks for any input, suggestions or guidance.

You may not have the right quantity or combination of drugs yet.  I went through 3 months a bunch of meds and combo's/dosages before finding my Depakote/Verapamil combo.

Look through these message boards and you'll see that very few found a preventative on their first try.

I also recommend Batch's immune system regimine of Fish oil/magnesium/calcium/vit K/etc as well.

Investigate O2 for when you get the CH as well.  Lots of info on that on the board as well.

Most important thing is to not give up hope.  This was all new to me 5 months ago, too. 

Mike NZ wrote on Mar 2^nd, 2013 at 7:39pm:

The background pain could be what we call shadows, which are like low level CHs.

Thanks for the great responses! I guess I'm discovering what everyone here has already learned in the elusive pursuit of answers.

Do other suffers have shadows/constant low-grade pain between attacks? I can tolerate mine, varying between a 1 - 3 on a scale of 10 where my attacks are a 15 or so. I've read some material that suggests ALL pain disappears between attacks. I'm just trying to determine what "normal" is and what to expect and anticipate. Yikes.

Cheers
Robert

Part of the fun of CH is that some of the meds cause side effects (one I took gave me migraines but took away the CH!).  Verapamil is working well for me along with Depakote, but one of the lesser side effects can be headaches.  Probably a good topic to discuss with your neurologist.  A good idea is to keep a daily diary with any issues you have (type, duration, intensity, etc) so you can accurately discuss it.

FYI, Depakote alone actually got rid of my clusters but I still had headache issues which is why we added the Verapamil to the mix.  Even now, I still sometimes get very minor pain around my left eye - about 2 on the kip scale when they happen (my CH were all on the right eye).

My guess is that there really is no "normal" for CH.  It is different for everyone, while a drug may work for one person, it may do nothing for another.  The best bet is to gather all the info you can and keep working with your neurologist to find what works for you.

Be patient, it may take some time.  There were times, honestly, I thought we'd never find anything that works, but we did, thanks in part to the things I learned on this board.

My guess is that there really is no "normal" for CH.

Truer words were never spoken sir! ;)

Joe

Hello to you all
i have been suffering from CH for around 15 yrs now but this is the first time i have looked on the internet for this. after being in and out of hospitals er's neuro's with them all tellin me the same we dont know what is wrong with you and have a few tell me to quit tryin to get drugs (wow i wanted to freak out when that came out of a dr's mouth) i have never been a computer person but my gf is around 3yrs ago when we met i went in to a 14month cycle she was scared to say the least but after countless er visits with her she googles my symptoms and bam there it was a youtube video of exactly what i go thru i couldnt believ it my pain now has a name CH and there are other people with this    i just now had a son on april 19th and im now going thru another cycle around 12 a day and im glad to have found this forum so thank you for your time and efforts

Welcome to the board Tim! I have my wife to thank for finding the poriginal streaming board many many years ago.  Are you working with a headache specialist neuro yet? We have seen the best results from doing so. GP's get about 4 hours total training in doctors school, garden variety neuros don't get much more. A headache specialist neuro is really your best shot. I’ve had CH over 35years, they haven’t killed me yet! You need an organized approach to managing them so they 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 30 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

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, 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.

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.


For now, get some energy drinks. 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

And Tim, these are some sufferer recommended docs in Michigan......Docs that won't tell you to take 2 aspirin, lose 10 pounds and reduce the stress in your life!.....they get it....any near you?

Ann Arbor:
Dr. Joel R. Saper
Michigan Headache & Neurological Institute

Dr. James Gramprie
Greater Ann Arbor Neurology

Kentwood:
Dr. Michael Bolan (PCP)
South Kent Family Care

Lansing:
Dr. Richard S. Ferro (Pain Medicine)

Portage:
Dr. Michael T. Ku (PCP)
Promed Family Practice

Pontiac:
Dr. Lionel Glass
St. Joseph Mercy Oakland

Joe

Hi,
I have just been diagnosed after 8 days of suffering one attack every day. I first went to a and e where i was diagnosed with sinusitis. I then had an emergency doctors appointment the following day as my eyelid doubled in size with the pain and was told it was a migraine and today at an appointment with a lovely newly trained doctor I was given cluster headaches as a diagnosis.
At first this was a big relief for me as I have spent the last week wondering if something is seriously wrong in my brain and if I am going to come out the other side of the next attack.
However now the information is all sinking in I am realising that my life may never be the same again and as a mother of a 2 and a 4 year old whose soon to be husband works abroad I am a little petrified.
To have found your site I feel is an absolute blessing and I am sure I will find comfort reassurance and a family of people who understand far more than even I do yet ut in reality a group who understand the pain.
Any early advice greatly received, thank you :-)

Welcome to the board. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they 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 30 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

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, 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.

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.


For now, get some energy drinks. 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

Many thanks I will take all this info onboard. I haven't been referred anywhere just given a tablet called sumatriptan which is supposed to stop an attack but didn't work today.
The diagnosis seemed accurate to me due to the severity of pain, the fact it's the same time every day and the eye swelling and constant tearing during an attack.
The doc is calling me back after the weekend so until then it's just two days of managing the pain and exploring your sight when pf (learning the lingo)
Many thanks again
Frags

Hi Frags and welcome

Joe has given you some great advice, especially about seeing a headache specialist as this is a pretty complex area of medicine and most doctors get little training around headaches. So this should set you up with a good treatment regime which works well for you.

The sumatriptan tablet is better for migraines than CH as it takes about 20 minutes or so to take effect. With a CH that is a lot of pain to go through. The injectable form is much quicker, but more expensive (depends where you are in the world).

Since it seems like the first thing you need to do is to get through the weekend I'd follow up on the energy drinks. Just drink one rapidly at the start of a CH and it can help reduce the intensity and duration.

Let us know what your doctor comes back with. Do ask how much experience they do have with CH as many doctors, even neurologists have little experience in this area.

Thank you so so much. I drank two cans of redbull and took the tablet yesterday and came down from my room an hour and a half earlier than previous days, although I had still been in pain it was much more manageable and I didn't have the 'body shock' after effect which I liken To how I felt after giving birth to my children. This weekend has been a different experience thanks to advice from your members and another group too.
I cannot thank you enough and will keep you posted how I get on with the doctor tomorrow :-)

Hey all, My name is joe. 35 yrs old. Married to the most understanding woman on the planet. I have four boys twin 17 yr olds, a 3 yr and a 2 yr old. had ch for about ten years now. I read the first post I came to and almost cried. I truly thought nobody went through what I do. I get them bout 3 to 4 times a day for about 4 months then maybe 2 months off. They are truly the only thing in my life that scares the s--t outta me.

Hello all. I'm Kat and I've been having CH since I was 14. It took almost twenty years for me to come across a neurologist that said maybe, just maybe my migraines aren't migraines. I'm a month in my new diagnosis, so far oxygen and coffee have been the best help. I've been on Verapamil but no relief. Zomig Nasal works but leaves me incoherent for the rest of the day. I am currently on week 8 of my current cycle and it's seriously kicking my ass. It has never been this bad before. I have 3-4 attacks a day currently.

The more I read posts here, the more I recognise symptoms from my past. First I got really angry, thinking shouldn't someone know by now? But snotty er docs aside, I hope I have finally found a neuro that won't laugh at me.

Keeping up the hope and faith in docs seems a little hard right now. Currently my attack begins with me falling asleep practically standing and waking up 15mins later feeling like a reject-zombie from Walking Dead. Then the pain kicks in. I have no idea why I fall asleep, but if I try to stay awake the pain and disorientation becomes so bad, I loose all ability to function in any way.

I am also on Lyrica and I have no idea if my current cycle is due to yet another upping of it's dosage or not. My back is basicly gone to s**t, and on top of this I have nervepain (hence the Lyrica) and severe muscle/bonepain, to which I am popping codeine like candy. It seems to me that opiods trigger cycles and escalate them to, well, h*** on earth. So everyday is a choice between fighting the beast in my head or fighting to get around in my home. And the doctors refuse to give me oxycodone. They gave me some in the hospital when I was diagnosed with CH and it felt great! First opiod without the usual side effects of dizziness, nausea and seeing things electric blue??!! (that was fun...)

I have no idea how my husband can live with me, but I take comfort in the fact that he still sticks around. Can't be easy.

Wow -I sound really whiny! Sorry about that, I'm not usually quite this depressed sounding, but I guess this cycle is wearing me thin. But to whoever suggested making icecoffee, so it's always ready in the fridge? THANK YOU!! It's saved me from going nuts several times.

But then again, I think being bonkers helps? Anyway, happy to be here and hopefully I can post more coherently in the future.

Hi Kat and welcome

Good work on finding a neuro that finally understands what is happening to you. Far too many people have to go years before they find a good one but now you've found one you can work with them to really get things working well for you.

I'm really intrigued by your CH description where you fall asleep and then get woken up by the CH 15 minutes later as I've not read about anything like that before. I'd love to hear what explanation your neuro has given you for this.

You also seem to have a real balancing act between your back and your CH. Whilst popping codeine for the back might help, it really isn't good for CH as it rarely deals with the intense pain, there is the risk of addiction (far too easy and it happens to many) and the risk of rebound CHs from overuse of pain killer medication.

Whilst you've tried verapamil, what dose was this? Typically people need 360-480mg a day and some over 1000mg! However people are often given much lower doses or not enough time for it to become effective (at least 10 days).

Have you tried any other preventive like topomax or lithium? Where one might not work another may do.

You didn't mention using oxygen to kill CHs. I can kill mine off in about 5 minutes using a high flow rate (25lpm) and a non-rebreather mask. It is a great way to get rid of one as it is side effect free and you can use it multiple times a day / night.

Keep reading and asking questions, you'll learn a huge amount.

Hello Mike NZ.

I'm talking to my neuro in a few weeks - so far it's just me getting any info on this as I can. It seems to me that I'm in the position that I have to become the expert on my condition, since I'm the only one who likes to see the whole picture. Right now I'm being juggled between a neuro, neurosurgeon, orthopedic surgeon, physiatrist and my own GP of ten years, who so far seems to be the best source for help.

I have tried oxygen, but I don't have it at home, and I have to into the health clinic for it, and "driving under the influence of head splitting pain" isn't the best course, even if it is only three miles. Oxygen does help, but I'm still trying to find the correct dosage with the nurses. But since none at the clininc even knew about CH, I'm the one giving the instructions on my treatment. I hope my neuro can get me oxygen so I can treat it at home. So far, it's coffee, and more coffee...

My Verapamil is currently at 240mg a day, but they said I need to get my blood pressure checked before they can up the dosage. I've had problems with betablockers before, with my BP dropping below the point, where docs were asking how am I still upright.

About my going to sleep attacks? They are extremely weird. My hands feel like they were injected with mercury while I sleep and hurt like I've been chopping wood sans the axe. They get a little swollen too. Then the pain starts and last for about 90-120 mins.

I have more "regular" attacks too, when it begins with just a little dizziness and then it's hello beast -time. Oddly, I can usually cope better with these attacks, since headache has been my bff for too long.

But I will keep reading on, see what I can dig up. But I will report back if the neuro has any idea why I go to sleep. I once though that it might not be sleep, but actual loss of consciousness, but I have no way of knowing.

And I absolutely love the Kip scale. It's not only for CH but all chronic pain sufferers. Currently mine is at about 6, but it was at 8 before the coffee kicked in. It's not going to be a pretty day.

Trying to drive whilst having a CH isn't a great idea, be careful!

Also oxygen is most effective when you start on it as soon as possible after the CH starts, so the delay in driving to hospital and then getting to the point where you get the oxygen will be enough to make it a lot less effective than it can be.

Do everything you can to get your own oxygen so you can get on it quickly. You'll just love the difference it makes.

Instead of coffee do try using energy drinks with caffeine and taurine, like Red Bull or Monster. They can be even more effective than just coffee. I've cans stashed in various places like the car, by the bed, in the lounge just in case...

Verapamil at 240mg is a very low dose for CH with many needing 360-480mg and some over 1000mg. However there is the balance between the impact on blood pressure, possible side effect on the PR interval (why you'll get ECGs done when using it) and the benefits on your CHs.

Thanks for the update on the "falling asleep". That really sounds quite different to what most people have so do try to get an update on it from your neuro.

Glad to hear the D-3 seems to be working for you. And I hear you on the wife and kids, I hated how it affected the little ones growing up. On the bright side, by the time they were 12 they could rig a regulator on an E-Tank in nothing flat! Hoping beasty is gone for good.

Joe

Hi Jen and the CH family.  I am not new to CH's (25 years now), but I am new to your site.  Since I am in my 50's and haven't had a bout in 12 years, I thought I was out of the woods.  Well, 9 weeks ago I had a rude awakening when they returned.  This time they're different.  In the past 25 years, they have always been on the right side, this time they're on the left.  Only thing I can figure is that I had surgery on the left side 3 years ago opening up that side of my sinuses.  This is now my sixth round with CH, with the last round lasting 13 weeks.  Last night I had two CH's back to back, with only a 1/2 hour of relief between them.  That is if you want to call the immediate time after a CH relief......  Anyway, I just wanted to say hello to everyone and I will be checking in regularly to see how everyone is coping.  Maybe pick up on some pointers and share some of the things that help me.  Although, not that much, other than time.   :D

I am your age also, suffering about 30 years, I also had sinus and ear surgery and mine are way worse now, also closer together.  May we all be painfree soon. URGGGGG

My doctor finally put me on O2 and Sumatriptan.  The O2 is great, if I catch the CH early.  If not, the Suma works in about 15 minutes.  Beats the heck out of having to ride it out for 1-3 hours.  I do have a question about the Suma.  My doctor put me on a prescription of only one shot a day.  Does me no good if I get 3 bad ones in a day.  He said Suma can cause heart attacks.  I haven't found anything that backs up that statement.  I'm sure he rights, but was wondering what other CH sufferers knew about Suma and just how safe it is to take more than once a day?  Just seems odd that now that I found something that works, I can only use it on one headache a day.  I get 3 regularly.  Thanks!!!  Cheesy

Hi,
CH is caused by dilated blood vessels. Suma works by constricting them again. So if you already had blocked or narrowed arteries then blood supply to your heart could be compromised.

I have 6 - 8 attacks a day when I am in cycle. I am allowed 2 injections of 6mg each. One injection usually lasts 4 or 5 hours for me, so will cover 2 headaches - sometimes 3 if I'm lucky. I try to save one for the headache that always comes in the night.

Have a look at "imitrex tip" link on the left of your screen. It's not that easy to understand, but I have seen a similar thing on you tube. Sorry, I don't know how to post a link (computer dunce) but if you search around I'm sure you can find it.

Hope this helps
Maz

Hello
I'm a newbie.Where and how do I go about making a post to introduce myself to the gang?
ES

            Go to gettin to know you

          Potter

Go back to the getting to know you board, on the upper right you'll see a box that says "start new topic" click that and let us know a bit about you. Welcome to the board!

joe

Hi All,

i was diagnosed yesterday with CH's and after years of misdiagnosis i am relieved. i am not a panicy person but these headaches did test my strengh........i am so glad i am not alone with this....lets see how it goes

Gemma

So glad you found us Gemma, start reading everything on this board, ask any questions you might have. Did the doc set you up with a decent prevent med like Verapamil, Topomax or Lithium? Some decent abortives, hopefully oxygen and imitrex injectables? Let us know a bit about your treatment regimen maybe we can make some suggestions to take back to the doc.

JOe

Hey everybody,

I'm new here, and wish that I'd looked for a forum before now as I can see you're a good bunch and CH have often been very isolating throughout my life.

Here's where I'm coming from - it sounds like a sob story, but I do have confidence now that I can work through and around these issues in future:

I was diagnosed earlier this year when I got insurance through my school and could finally afford to see a Neurologist. He said I suffer from menstrual migraines AND CH, and have been misdiagnosed for years (I've had attacks for as long as I can remember) as having simply "severe migraines" or "perennial sinusitis".

I've been fired from past employment, been forced out of jobs I was really good at and worked really hard to make sure I didn't fall behind in. My school attendance records have been riddled with absence and I feel like I'm still playing catch up on a lot of things, even at the age of 30 years old.

I don't blame all of my problems on CH, but I do feel like it has made a lot of things much harder. Going back to school to finish up my degree has kind of been a struggle as there are incredibly strict attendance guidelines. Although I pulled a 3.25 GPA last semester, I was threatened with course failure from every class due to poor attendance, even with the student disabilities lenience supporting me.

I started keeping my CH a secret from even the closest people around me because I felt angry at myself for not being able to control my own body. It was unwise to hide it, especially from people I live with because their introduction to it was an attack that scared them. They didn't know what was happening and were asking if I'd taken any drugs, worried I had overdosed. Now they understand, and I wish I had been open from the start, instead of hiding it in shame.

My doctors, medication, and self-acceptance have been such huge factors in dealing with and avoiding further instances of those most terrifying and isolating times.

So now you know where I'm coming from, I want to learn more about you guys, and hopefully (as I think I've seen so far) we can talk each other through any difficult cycles.

Thank you!

We're damned glad you found us, here's your basic crash course on surviving CH!:

Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they 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

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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. The regimen also seems to help migrainers so it might help with BOTH of your issues.

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, 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.

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

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

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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.


For now, get some energy drinks. 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

Hi Kids, it was a real hard ride, but its been over for 2-3 years now. They started when I was 25, I'm 57 now. I'm hoping they never return. So much to tell, I learned to live with em even though I knew I couldn't. I think to myself I must have a titanium or rebar backbone to have made it through that GD thing. It truly was "The Valley of The Shadow of Death". For me nothing worked. I tried oxygen, peppers, Cafergot, lidocaine nose drops, lots of coffee and cigarettes, sun lamps, lots of sunshine, vitamins, eating right, eating wrong, booze, and finally no booze. Yet still the shadow would howl my name from some distant star to tell me it would arrive right on time. They could have set Greenwich Mean Time by that mean S.O.B. I’m here , I lived to tell about it! I feel like a GD’d hero. I’d like to share what I learned with you!

It will steer your life. So if you can get help from anywhere please do so.
The only 2 good things about having CH’s is how fast the pain subsides, when it does.
And you will find out who your loved ones are!

When one would hit, I got the (1) eye and nose thing, the tearing, the stuffy (one) nostril, the monster riding me hard banging on me to tap out. My body temp. would go from 98.6 to 101 deg. just as fast as the world spiraled into the smoke colored pit. I believe in hell but it aint somewhere else. I lived in a real nice house there. So I'm not scared of whats gonna happen when me and the devil size each other up. I watched this happen time after time, day after day, year after year. Then one day I tried something. When the shadow hit I jumped in the shower with the hot water turning my skin red, the hotter the better, for as long as I could stand it. Sucking in the steam, breathing it as deep as my lungs could. Then always looking for a cool, quiet, dark spot to lie down, in loose shirt and shorts or sweats I would place an ice pack on my forehead, at the back of my neck and sometimes all over my head. When the ice melted and it still hurt I'd do the whole damn routine agin, from the top. And if I had to, I’d do it until finally peace would come. Looking back now, I’d have to say those times when the pain abruptly dropped off were the best times of my life. Now I’m 57 I’m almost done. What a bitch. I do know, to have the pain leave you, is to know true peace.
.......ptc......aurl

aurl wrote,
I would place an ice pack on my forehead, at the back of my neck and sometimes all over my head. When the ice melted and it still hurt I'd do the whole damn routine agin, from the top. And if I had to, I’d do it until finally peace would come.

Hi aurl,
Worked for me, 15-20min  [smiley=evil.gif] was on his way.

Hoppy.

Hi Hoppy, yep, I didn't mention sometimes I could get ahead of my old friend, by using this method or parts of it and sometimes I might go 6-8 months without freaking out around bedtime. Also as stated above by Guiseppi wholesale bombardment of the immune system by proper nutrition /organic hopefully, vitamins, fish oil, and everything else you can afford never killed anyone.

I just wanted to say hello to everyone on this site and than you for being here. Hope I'm making sense cause I am going on my 5th or 6 th week of clusters. Anyway, thanks for bein here. Catch ya later.
Kathy

kathy sue wrote on Apr 3^rd, 2014 at 4:39pm:

I just wanted to say hello to everyone on this site and than you for being here. Hope I'm making sense cause I am going on my 5th or 6 th week of clusters. Anyway, thanks for bein here. Catch ya later. Kathy

    Gonna need a leetle more information.

               Potter

G'day Kathy Sue, and welcome. Sing out if we can help at all but we're ever here for you anyway.

Cheers always,

Brian.

Hello all,
I assume this is the place for newbies first posts, so here goes.

I am Not CH - I am posting for my husband.
He (Sam) is Not neuro diagnosed - just GP and research.

This is Sams second year, similar timing and this time round is 2 to 3 weeks old.
Neither of us are fans of "conventional" meds, though we do take them. We both prefer the benefits of complex compounds over simple compounds and so are unwilling to consider the more poisonous/dangerous medicines on offer.
We believe that most medicines originated in plant life and thus will  always prefer the herbal option.
We have had a measure of success, last year, when considering the headaches might be connected with small vein disease (still being investigated, though MRI shows signs). This limited success was treated with a concoction of herbal tinctures designed to relax the body and nerves, increase blood oxygen transmission of the small veins in the brain and to mitigate the pain.
Question: Has anyone (or group) investigated herbal mixtures and, if so, what were the various outcomes?
Jennifer.

Jennifer,

Welcome to CH.com, you've come to the right place.  We know what your husband and you are going through...  The good news is it doesn't need to be that way.

Have your husband see his GP and ask for the lab test for 25(OH)D.  This is the serum level metabolite of vitamin D3 that's used to measure its status. 

The normal reference range for 25(OH)D is 30 to 100 ng/mL, (75 to 250 nmol/L). Nearly all cluster headache sufferers (CH'ers) are vitamin D3 deficient, <30 ng/mL).

80% of the CH'ers deficient in vitamin D3 who have started the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3 have experienced a significant reduction in the frequency, severity and duration of their CH.  75% of them experience 24 hour pain free days and 60% remain pain free.

You can read about this regimen at the following link.  It contains the list of supplements in this regimen and dosing.

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This is a healthy and natural way of treating CH with many other health benefits.

You can find additional information about this regimen and user comments at the following links:

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Take care and please keep us posted.

V/R, Batch

Many thanks for the reply, Batch.
I will certainly follow this up as my husband Egyptian by birth and as such I have been concerned about his Vit D levels.
LJ

I am a newbie. This is my first post. I found this site 4 days ago and it has changed my world. My CH started 5 years ago and are progressively getting worse. My first was a hangover from red wine. A year later the 3 am beast headaches started if I drank bourbon. All alchohol induced. Now if I get no triggerat all I still get 3 am headaches twice a week. Pain on right base of nose and above right eyebrow. An almost continual background headache. I waited 3 months for my neurologist appointment and she put me on cymbolta and I take oxycodine for the midnight rides. She told me I had nerve damage in face from having my nasal turbulates removed 10 years ago for chronic sinusitis (yellow drainage- not CH) so I believe I have been misdiagnosed. I have terrible headaches that have a tenuious grip at first. If I drink lot so water I can abort a beast. I found I had headaches if i got dehydrated and if I felt one coming on like a flickering light bulb and that guzzling a huge glass of water stopped it. If I chew anything the pain instantly goes away, I have only seen one instance of this I your forum but it is an incredible godsend. During midnight attacks I chew 10 packs of gum until the pain pill kicks in and dulls but nots stops the pain. I get over heated like my chest is a heating element so I put a separate air conditioner In my man cave where I set the AC to 67 degrees. My wife ran me out of the bedroom and  banned me to the man cave for freezing the house and wanting my pitiful face messaged every night. Here is one symptom I have not seen on any other patient ( maybe it's is nerve damage?..) Since the symptoms got real bad this year I have had super smell capability. This doesn't seem to fit CH. I meet a person and can smell what they ate. I can walk into a room and smell the carpet and a persons aftershave at the same time. My wife flops in the bed and I can smell if she had a glass of wine. And food tastes incredible and I want to got to French restaurants for their complex sauces. I used to walk in the room smelling like gasoline and not know it. This is a new thing for me and very odd. Yesterday, I went deep sea fishing out of nags head and had a headache coming on. It was raining with black skies and high seas.  I had just read on this website that monster drinks with taurine stopped the beast (thank you, thank you, thank you! ) so I guzzled two 16 ounce monster drinks. Instantly I went from a flickering 5 to a almost gone 1 so I was ecstatic. But the big waves with the full stomach of caffeine food crap soon made me throw up but I didn't care. As I sat back down in my seat wiping my face and smiling to have aborted a headache, the old timer on the boat taps my shoulder and goes "you know, you drinking those caffeine drinks are what are making you throw up." And I said "me drinking those caffeine drink are what stopped my headache!" and I grinned at him happy to the core, but he only cocked his head sideways stared at me in puzzlement. Only a CH suffered could understand this story.

Hi and welcome

As you've found, alcohol is a very common trigger for people with CH often bringing a CH within minutes, so the only option is to avoid alcohol for the duration of your CH cycle.

I'm a little confused by the medication that your neurologist gave you. Oxycodone is an opiate pain killer however even the strongest pain killers don't really touch the pain from a CH, they tend to need ever increasing doses and there are addiction related problems, plus you can get medication rebound headaches from taking pain killers too often. So for virtually anybody with CH pain killers are not a good option. Similarly Cymbalta (Duloxetine) is not a mainstream CH medication, instead it is normally given for depression and anxiety.

I suspect that she has little experience or practical knowledge of working with CH. This is why we normally strongly suggest that people see a headache specialist with CH experience. They will be able to confirm your CH diagnosis and give you much better medication to deal with your CH.

Ideally this should include a preventive, something like verapamil or lithium, which will cut down how many CHs you get. Plus abortives to kill off any CH you get. Injectable imitrex (sumatriptan / imigran) will kill off a CH in about 5 minutes. Also oxygen at a high flow rate (15lpm+) and using a non-rebreather mask will also kill off a CH in a similar time.

Until you get these sorted out, use things like energy drinks, either hot or cold (shower / ice packs or similar), exercise, etc. Some may help and others might do the opposite.

Also check out how we're using vitamin D3 as a very effective preventive too.

The extra sensitive sense of smell caught my attention. I used to have a useless one too, however I had a concussion (which triggered my CHs starting) and after that I've now got a pretty good one, especially for burnt toast.

I agree that I don't think I am taking the right medication. I live in Richmond Virginia and have no idea how to find a doctor who both knows cluster headaches and also will be responsive. Or should I find a General practitioner who is sympathetic and will simply write scripts for the techniques if find on this site. One who will allow me to cycle through all possible solutions until I find the combination that works for me. 

I can't help you with finding one (I live in New Zealand) but you really need to find a headache specialist to get a confirmed diagnosis. Once that is done and you've been set up with the right medication for you then you may be able to work with a GP.

There are links on this site to help find a doctor in your area.  You should also call the local medical center or hospital and ask for their headache specialist.  Get an appointment right away, and call for cancellations every day if the appointment is months away.  I had to do this and it paid off big time.  Saved myself months of suffering. 

Weum! Sorry you are suffering!

There used to be a list on O.U.C.H (a UK cluster site) but I don't see it anymore. What I did here in NC was email everyone near my area that's listed on the "Where we live" link to the left. I introduced myself and asked who they used and what their experience was with that Dr.  I did get a couple of responses that led me to my neurologist in Winston-Salem. He leaves appts open each week for those that are in cycle and is very open to anything that works. Give that a try!

Best of luck!
Judy

Good Luck

Hi Barry here..i posted somewhere else but why not say hey here too..it does say home away from home..and im telling ya,i thought I was alone in this world.i had no idea there were so many Cluster sufferers..it's amazing...
anyways,i been a Chronic Sufferer since 88 and I cant believe I survived it all this time..all glory to The Man up stairs..well take care God Bless everyone..Bear R.-

---

I am here, as well.  I suffered with the beast for 25 years...but am here to tell you that it can 'go away' for whatever reason.  I will tell you what worked for me when I had to deal with it and what my research told me. I hope I can help someone dealing with this horrific problem!