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        New Message Board Archives >> 2003 Posts >> New CH'er - please help!
        
(Message started by: paul_d on Jul 1^st, 2003, 9:20am)

Title: New CH'er - please help!
Post by paul_d on Jul 1^st, 2003, 9:20am

Hello,

I am a 25 year old South African male and I was diagnosed as a CH sufferer about 4 years ago, and would describe my headaches as episodic. I have chronic bouts, but not very often. I am trying to find out more information on how a person's lifestyle may affect his headaches. Is smoking related or not?? Has anyone noted an improvement from refraining/initiating an activity in his/her life?

I am so happy to have found this site! Any more information would be great. Thanks for your help.

Title: Re: New CH'er - please help!
Post by Ree on Jul 1^st, 2003, 9:35am

Hi Paul Thats what I like sign up and join right in... Nice to meet you. My husband is a sufferer for about 20ish years we stopped counting... He gets his bouts with CH every 2 1/2 to 3 years...
Some people are effected by lifestyle triggers such as alcohol... For instance when my husband Dave is in the peak of his cycle he cannot drink or the medication he is on wont work for him. Others here have said that drinking would bring on an attack... others say that alcohol aborts an attack. Though there are alot of text book cases of CH. Most cases are individualized... Welcome to the family and keep us posted on your progress, medications your taking etc... Good Luck Ree

Title: Re: New CH'er - please help!
Post by paul_d on Jul 1^st, 2003, 9:40am

Thanks for the vote of confidence Ree. I must say, it is fantastic to hear from people who know all about CH, as its quite hard to explain to everyone exactly whats going on in my head!

Thanks again, and I look forward to contributing in the future.

Paul

Title: Re: New CH'er - please help!
Post by echo on Jul 1^st, 2003, 10:49am

Welcome to the MB Paul. The is a wealth of information and support contained within the MB archieves and membership. Hopefully you will find your answers. CH cause and effect are different for everyone, the CH beast is a mutant thus making it difficult to find the cure all solution.

Title: Re: New CH'er - please help!
Post by Live4Fun on Jul 1^st, 2003, 11:22am

Paul,

Welcome aboard :D, but sorry you have to be here. :(

Current research shows that smoking has no effect on CH. You will find that MANY of us here at CH.com are smokers. However, they discover new things every day, so ya never know...

Keep asking questions and keep fighting the good fight!

PFDANs

Bryan

Title: Re: New CH'er - please help!
Post by paul_d on Jul 1^st, 2003, 1:02pm

Well, I will definitely be doing Research on the effects of smoking on CH, as I am a smoker and have commited myself to doing all that is possible to limit the impact that CH has on my life!! Quiting included if necessary.

Also, does anyone know of any dangers of Sumatriptan? I have found it most effective, even though I find it rather expensive. Are there any long term effects?

Thanks again for the big welcome. Much appreciated.

Regards,
Paul :)

Title: Re: New CH'er - please help!
Post by ave on Jul 1^st, 2003, 1:03pm

Hello Paul, sorry to welcome you.

Have you checked out all the info under the buttons to the left? There is tons of it!

Also visit clusterheadaches.org aka OUCH, with lots of practical information.

Smoking does not seem to have any influence on attacks, attack patterns or episodes. alcohol is a trigger for many, but no for all (for me it keeps attacks away for a space).

One little thing: chronic is when you have not had two weeks free of pain and attacks in one year.
I know it seems chronic when you are inside an episode, but if it stops and stays awy for weeks or months or even years, you are properly termed an episodic .

Lecture over...!

Title: Re: New CH'er - please help!
Post by Nick-Nova on Jul 1^st, 2003, 2:11pm

Hello Paul

My mother is a long time sufferer, and it isnt until very recently I have found this wonderful resource. She has as far as I am concerned had a very poor diet and lifestyle, although no (nonprescribed) drugs or drink. We are currently working on cutting sodium benzoate, MSG, and other food chemicals out of her diet, with a healthy amount of exercise. Seems to be working)

Title: Re: New CH'er - please help!
Post by Mark C on Jul 1^st, 2003, 3:19pm

Hello Paul and Nick,
My personal experience is that my environment has very little effect on my CH. In the last 30 years I have changed jobs, States of residence, brand of cars, women and just about everything else. The one constant has been pretty regular visits from the beast.

I am of the school of thought that something is wrong with our Hypothalamus (http://www.clusterheadaches.org/library/hypothalamus/index.htm) which is the root of our disease. Don't get me wrong, I have plenty of rituials to go along with a CH attack...but I doubt anything short of Imitrex or Oxygen really helps, but this is just me.

Here (http://www.clusterheadaches.org/library/general/index.htm) is another favorite link of mine...study up.

PFDAN's
Mark

Title: Re: New CH'er - please help!
Post by Charlie on Jul 1^st, 2003, 5:52pm

Welcome aboard. You're right. It was great finding a place where clusters aren't something misunderstood. It's why I stick around.

We really can't say if tobacco is significant. A hell of a lot of board members are smokers but we don't know the percentage of CHers. It's too easy to say yes. I quit 23 years ago but my CH has been gone for only half that. Beats me. So far as I know I have no triggers.

Good luck and stick around

Charlie

Title: Re: New CH'er - please help!
Post by cathy on Jul 1^st, 2003, 5:55pm

Welcome Nick and Paul...

Cathy :)

Title: Re: New CH'er - please help!
Post by jonny on Jul 1^st, 2003, 6:41pm

on 07/01/03 at 17:55:58, cathy wrote:

Welcome Nick and Paul...

Cathy :)

You complete and total bollocking suck up.
;D

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

Title: Re: New CH'er - please help!
Post by paul_d on Jul 2^nd, 2003, 6:28am

hey everyone,

Sounds like a mixed opinion on smoking, which is interesting. I dont think it affects me, but am going to quit anyways for other reasons. Ave, thanks for the lecture!! I am definitely not a chronic by those measures, but would definitely describe some of my episopdes as "chronic" by my own standards!! Had a horrible night last night, so feeling chronically p*ssed off today as well!

Anyways, if anyone has any information on Sumatriptan as well, I would be grateful. I guess that'll only be when you guys in the US start your days!!

Thanks,
Paul

Title: Re: New CH'er - please help!
Post by BarbaraD on Jul 2^nd, 2003, 6:59am

I couldn't take sumatriptin - didn't like the side effects. I take cafagot. It seems to work longer without the side effects. Might try it.

Smoking doesn't seem to trigger mine (beer does - not other alcohol - just beer). Barometer triggers mine or seems to. Go figure. Everyone is different and so far we haven't found a "common" trigger for them although we've looked hard enough over the years.

Trust me - YOU don't want to be chronic. Been there and right now I'm in remission and hope to stay there forever. I found a drug called Topamax and it's been my lifesaver. The demon comes through periodically and I have to up my dosage, but for the most part I stay fairly pain free (at about a 2 or so). It's wonderful having a life again.

Hope you find your miracle drug soon.

Hugs BD

Title: Re: New CH'er - please help!
Post by Jayne on Jul 2^nd, 2003, 8:28am

Hi Paul

The drug of choice for most CH is VERAPAMIL!!!!!
This is very affective for most clusterheads. Are you on anything at all to prevent your headaches? Please tell us what you are taking?
Verapamil is a preventative drug. You have to take it everyday, and might have to "play" with the dosage to see how it helps you. Anywhere from 180mg per day to sometimes 960 mg....somewhere inbetween that usually helps people. It saved my life let me tell you.

Title: Re: New CH'er - please help!
Post by Bob P on Jul 2^nd, 2003, 8:34am

Courtesy of the OUCH Library:
http://www.clusterheadaches.org/library/general/lifestyle.htm

My personal opinion is that it's not the lifestyle that causes the headaches but the messed up hypothalamus that causes the addictive personality.