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  New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › WELCOME!
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WELCOME! (Read 80102 times)
tdow
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Re: WELCOME!
Reply #225 - Jan 22nd, 2007 at 10:40am  
Quote:
Hello tdow, nice to meet you.
Have you tried verapamil?

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

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

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

Regards
Helen


Helen,

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

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

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

I will continue to log my treatments success and failure.

So far: Imitrex NI 1, Inderal 0
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« Last Edit: Jan 22nd, 2007 at 12:13pm by tdow »  
Tom
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brewcrew
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Re: WELCOME!
Reply #226 - Jan 22nd, 2007 at 10:45am  
tdow wrote on Jan 22nd, 2007 at 10:40am:
I have noticed red bull does help, but I cannot sleep after drinking a can.

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

If your pain is similar to most around here, there's not really a choice to be made.
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LeLimey
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Re: WELCOME!
Reply #227 - Jan 22nd, 2007 at 10:53am  
I have a very low BO so verap wasn't a successful option for me as I couldn't get to a high enough dose for it to be effective (kept fainting  Roll Eyes )
There ARE other options though, keep reading on the site, there are lots of other peoples experiences and you will definitely find other options which you can take to your doctor.
Do most of your attacks occur during the day or night? Melatonin is another option for night time hits that you may want to look for posts in regard to and ignore Lithium's more common useages, it has become an effective med for CH and is well worth considering too.
Personally I find red bull and its cheaper equivalents to be the most vile revolting stuff ever to have to drink - but given how it can stop a hit in its tracks for me I have learned to have a love/hate relationship with it! I prefer strong coffee but a can of red bull is more practical to dig out of the bottom of my handbag LOL
Have a read through the meds and ch specific boards and ask all the questions you want, we all remember what its like to be new and how it can seem like information overload. Take your time, remember there are NO stupid questions if you need to know something and keep your chin up.. we'll help you through this!
PFDANS
Helen
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tdow
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Re: WELCOME!
Reply #228 - Jan 22nd, 2007 at 3:05pm  
Quote:
I have a very low BO so verap wasn't a successful option for me as I couldn't get to a high enough dose for it to be effective (kept fainting  Roll Eyes )
There ARE other options though, keep reading on the site, there are lots of other peoples experiences and you will definitely find other options which you can take to your doctor.
Do most of your attacks occur during the day or night? Melatonin is another option for night time hits that you may want to look for posts in regard to and ignore Lithium's more common useages, it has become an effective med for CH and is well worth considering too.
Personally I find red bull and its cheaper equivalents to be the most vile revolting stuff ever to have to drink - but given how it can stop a hit in its tracks for me I have learned to have a love/hate relationship with it! I prefer strong coffee but a can of red bull is more practical to dig out of the bottom of my handbag LOL
Have a read through the meds and ch specific boards and ask all the questions you want, we all remember what its like to be new and how it can seem like information overload. Take your time, remember there are NO stupid questions if you need to know something and keep your chin up.. we'll help you through this!
PFDANS
Helen


Helen,

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

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

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

Brew,

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

Tom
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Tom
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LeLimey
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Re: WELCOME!
Reply #229 - Jan 22nd, 2007 at 3:20pm  
Tom alot of people find melatonin very effective for night time hits, you might want to look for posts on it on the meds board and consider whether its an option for you or not.
As you've found, excersize is a big trigger for a lot of people but then again, some people find it will abort a hit. For me thats one of the most aggravating things about CH, the way that it affects us all differently and often at opposite ends of a spectrum. It makes it harder to find options but by knowing our triggers and patterns we can put the pieces of our individual jigsaws together and aim to come up with a plan that works for us.
I don't want to pry into your life story but some basic questions will help with suggestions, just don't answer anything you don't want to!
Helen
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Chrispah
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Re: WELCOME!
Reply #230 - Feb 23rd, 2007 at 3:42pm  
HI,
I am new to this website and am searching for answers. I spent most of my day yesterday in the ER with horrific head pains. Starting close to the back of my neck on the right side and shooting up behind my ear. This isnt my first bout with them but it was bad enough to beg for someone to make them quit. I had these extremely bad about 10 years ago and sought a neurologist to help give me some answers. He instructed me to get rid of the stress in my life.  ;Grin( I kindly told him that was illegal and that I could go to jail for that) He gave me an anti - inflammatory and told me to take ibuprofen along with it. It didnt cure them it made them more bearable so that I didnt have the desire to die. I had them perodically on and off for the last 10 years.. but never having them come so often and so extreme as they did back in the 1990's and yesterday.  The doctor at the ER told me that they sounded like cluster headaches and gave me imitrex and some lortab. I have found that the imitrex works but it takes so long for it to kick in. That the hour or two that it takes to make them stop.. is hell. I just sit and hold the back of my head and cry. My husband feels horrible and so do my kids cause they want to help. I question if it is really cluster headaches. I am not male.. and i dont see them come in cycles like most of you talk about. I just want some answers.. I want to know if any of you can give me any advice .
Look forward to hearing from you..
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thebbz
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Re: WELCOME!
Reply #231 - Feb 23rd, 2007 at 6:11pm  
Hang tough do some reading here and
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
here
Check your pms...in the upper right of the screen
good luck
jb
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Linda_Howell
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Re: WELCOME!
Reply #232 - Feb 23rd, 2007 at 7:45pm  


Chris,  If it takes 2 hours for the Imitrex to take effect they must have given you the tablets.   They are useless.  Make them at least give you Imitrex nasel spray or better yet...the injectables.  You'll see results in less than 10 or mions.  Not 2 hours.
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Hurt people.....hurt people.   Think about it.
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Re: WELCOME!
Reply #233 - Mar 11th, 2007 at 2:24pm  
thanks t_h_b!






    Santa ;Grin
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DannyV
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Re: WELCOME!
Reply #234 - Apr 18th, 2007 at 10:28am  
djsdds wrote on Mar 29th, 2004 at 10:20pm:
Hi!

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

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

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

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

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

This is like living in Hell!!
   Only IMITREX INJECTIONS work on us.    The pills and sprays are a frigging waste.   IS your doc telling you that Imitrex injections Are not for clusters?   If so, He is in the dark ages.---Danny V
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My life is like water, swirrling down the drain.&&Gonna get me a shotgun, and disconnect my brain.
 
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Guiseppi
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Re: WELCOME!
Reply #235 - Apr 18th, 2007 at 10:45am  
And then lovingly, but FIRMLY,  tell him that women DO get cluster headaches. They used to classify everything about womens heads as migrains. As many of our beautiful ladies here will attest, CH is not an exclusively male club! (don't tell that Howell lady I admitted that)Sounds like you have a lot of reading to do, and then you have to educate your doc! Good luck and welcome.

Guiseppi
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Re: WELCOME!
Reply #236 - May 13th, 2007 at 11:44am  
Hi nab I'm from IL also I was wondering if your husband has tried Diamond Headache Clinic I've had great sucsess with them.I'm also on Verapamil (Calan) for 14 years .it works great for me tell hubby good luck and stay pain free Smiley
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Brewcrew
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Re: WELCOME!
Reply #237 - Jul 1st, 2007 at 2:53pm  
DannyV wrote on Apr 18th, 2007 at 10:28am:
Only IMITREX INJECTIONS work on us.    The pills and sprays are a frigging waste.

Speak for yourself. Lots of folks around here get relief from the nasal spray. Not quite as fast, but helpful nonetheless.
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sldrswyfe
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Re: WELCOME!
Reply #238 - Jul 13th, 2007 at 1:50pm  
W E L C O M E ALL!!!

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

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

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

Im so glad you all made it.  It's ok.     Sherri
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"Great spirits have always found violent && opposition from the mediocrities." -Einstein&&&&"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot&&&&"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
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Re: WELCOME!
Reply #239 - Jul 23rd, 2007 at 10:19am  
Hello there!! 

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

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

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

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

Please shed some light my way!!!! 
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ochreluna13
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Re: WELCOME!
Reply #240 - Jul 24th, 2007 at 2:13pm  
Hello, everyone!  Just wanted to introduce myself without creating a new thread.  I have not been diagnosed with CH yet, but am certain I will soon, as once I started doing some research on the "migraines" the doc said I have, it turns out they are not migraines at all...  I am currently seeking a doc with some CH experience, but they are hard to find...

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

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

I would like to know if there are any sites or places where I can look for a doctor that specializes in CHs so I can avoid misdiagnosis again?  (Or, if I have misdiagnosed myself, who will be competent enough to eliminate CHs as an option if that is not really it)...  I've had the requisite MRI, etc.
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seasonalboomer
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Re: WELCOME!
Reply #241 - Jul 24th, 2007 at 2:39pm  
Sorry to hear you had to find us.

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

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Maybe this will help.

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

Scott
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Scott
 
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ochreluna13
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Re: WELCOME!
Reply #242 - Jul 24th, 2007 at 2:43pm  
Thanks so much Scott!  That is so helpful!  I don't want to insult the neurologist by switching, but at the same time, I want a higher quality of care than what I got.  Sad
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DennisM1045
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Re: WELCOME!
Reply #243 - Jul 24th, 2007 at 2:46pm  
Hi ochreluna,

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

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

OUCH: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
The American Headache Society Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Good luck and I hope you find some relief soon.

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
dennism1045 dennism1045 524417261 DennisM1045 DennisM1045  
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ochreluna13
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Re: WELCOME!
Reply #244 - Jul 24th, 2007 at 3:28pm  
Thanks!  (kind of)

Everything I have seen here has been very useful!  I really appreciate all the sites to find a doctor.  I'm going to talk with my doctor on Friday to discuss this and try to get a referral to one of the doctors listed on these sites to avoid the previous neurologist, if possible...   ;Grin
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ochreluna13
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Re: WELCOME!
Reply #245 - Jul 24th, 2007 at 3:38pm  
I meant the (kind of) as in, "Thanks, but I wish none of us was here discussing this kind of horrid pain!"  Smiley
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Re: WELCOME!
Reply #246 - Jul 24th, 2007 at 4:28pm  
Hi, Ochre - I'm sorry I got to this thread a little late.

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

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

Sandy
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Lean on me, when you're not strong, cause we all need somebody to lean on.
 
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ochreluna13
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Re: WELCOME!
Reply #247 - Jul 27th, 2007 at 12:53pm  
Sandy,

Thanks!  That is close! 

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

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

Are there any therapies available that are safe for pregnant women???   Smiley
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Re: WELCOME!
Reply #248 - Aug 13th, 2007 at 12:04am  
Hi All
New to this site and my first post, I am Episodic and the cycles were tapering off. But last winter I had my longest session yet, (had just started a new job and it wasn't working out so the CH were just icing on an already bad cake.)
I had my first cycle when I was 20 and used Tylenol till I was 40 then discovered Imitrex. But the last cycle seemed to be Imitrex resistant, so I have started the search for something that will work now.
I will be researching this site alot in the next while, it seems to be a gold mine of info...
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Re: WELCOME!
Reply #249 - Aug 13th, 2007 at 11:26am  
Hey Turf, welcome to the nuthouse!!! Another one that had to wait forever to get a correct diagnosis, a little frustratiing isn't it? ;Grin You haven't mentioned oxygen, it should be your FIRST line of abort. For me it will  abort most attacks in less then 10 minutes, usually closer to 6.

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

Guiseppi
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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