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        New Message Board Archives >> Jul-Sep 2003 >> First Timer
        
(Message started by: jberensteinn on Aug 1^st, 2003, 2:33pm)

Title: First Timer
Post by jberensteinn on Aug 1^st, 2003, 2:33pm

First timer here on the web. Now 32 and been suffering since 22. First episode was light and occured in May, then got a visit every year, but one month later each time lasting 5 - 8 weeks. Excruciating. They seemed to settle in around Sept./Oct. Skipped the last 2 years (WOW) but its back now. 4 weeks into this cluster. Headaches twice every 24hrs (sometimes I get a bonus 3rd headache if I've been good).

Biggest problems: 1. running out of spots on my leg to inject the imitrex, 2. finding enough imitrex, 3. trying to convince pharmacists that I really have a problem and 4. Getting used to the new Glaxo injector - its much stronger than my old injector and leaves bruises from time to time.

Things that help - 1. Imitrex injectible - Without it I'd be a mess but I feel that it increases the number of ch's sometimes, 2. Oxygen - but only at the beginning and end of a cycle.

Things that don't help - water, excercise, deprivation of chocolate or caffeine.

New discovery - alcohol can prolong an episode or bring on a ch. :(

Neat Story: When I first graduated I worked for a guy who used to run out of the office now and then without warning. His secretary told me he had headaches and needed oxygen sometimes to rid them. Many years later, after I was diagnosed, I put 2&2 together and realized he had CH's and so I called him. He's now a live voice I can connect to. It's been really helpfull.

I think this site is great and am looking forward to researching new medication and therapy ideas. I'm sorry for everyone that has to go through this - just AWFUL!!

One last thing - I've read that there is a correlation between CH suffers and those with sleep disorders. I get sleep paralysis from time to time. That's where you are not quite asleep but you have some of the characteristics of REM sleep -- i.e. paralysis. Can be scarry if you don't know what's happening. Do any other CH's suffer from sleep disorders?

Title: Re: First Timer
Post by jonny on Aug 1^st, 2003, 2:49pm

Welcome aboard.

See Cootie for and oar, just dont give her no shit cause shes been known to bite ankles. ;D

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

Title: Re: First Timer
Post by miCHel on Aug 1^st, 2003, 3:00pm

Welcome TorontoPain!

Sorry you have to be here. But it's a cool place for all sorts of reason as you will soon find out. Hopefully this cycle will end soon and you will have another couple of pain free years.

By the way, that Stones concert in TO two days ago was something else. What a line-up! Blue Rodeo, Rush, AC/DC, The Guess Who, and a bunch of other great acts, to open up for Mick and the boys. 500 000 people and no major incidents. I think you can be proud of your City and hopefully, people from around the world will get the message that TO rocks.

Wish I could have been there...

miCHel

Title: Re: First Timer
Post by cathy on Aug 1^st, 2003, 3:03pm

Jeberen, Welcome to the clusterhead family, sorry your having to dance with the beast, hope we can help you kick his arse!!

on 08/01/03 at 14:33:03, jberensteinn wrote:

Biggest problems: 1. running out of spots on my leg to inject the imitrex

Do any other CH's suffer from sleep disorders?

As for a couple of your remarks, why not just inject where the spots arnt ;D

And as far as the sleep disorder goes, the only thing Wes suffers from while in cycle is Lack of it... :-/

Cathy

Title: Re: First Timer
Post by TorontoPain on Aug 1^st, 2003, 3:04pm

It was a great time. Didn't go myself but know a bunch of people who did. Consensus was that AC/DC rocked and the Stones were just OK. I saw the Stones "Steel Wheels" tour. Not bad. The Who was the best concert I ever saw though.

Title: Re: First Timer
Post by fubar on Aug 1^st, 2003, 3:09pm

Welcome aboard! As always, sorry you had to look for us, but happy as hell you found us.

Now, just don't say anything stupid for a while... ;D

After a while, you can say any stupid thing you like. Heh.

Balls.

See?

Yes, I said Balls. I still don't know why.

-Fu

Title: Re: First Timer
Post by Prense on Aug 1^st, 2003, 3:18pm

Can I get away with shortening TorontoPain to just TP? ;D Sounds like you have alot of the same gripes many of the folks around here do. At any rate, when I do manage to find a quack, errr, ummm, doc that will scribe trex for me, I'll bitch bout not have'n enough of it too. Until then, I'll keep disolvin' these cheesy lil pills that seem to do absolutely nuthin and repair drywall everyweekend. Hang in there. Alcohol has been a trigger for me for at least 5 years now and I have been having them for 9. It sucks, but I guess...we adjust or we don't. ;D There are consequences and I know that everytime I set sail with The Captain man, I really miss him!!! Can I get a Mogan vibe please? HAHAHA just kiddin. See ya around TP

Chris

Title: Re: First Timer
Post by River_Rat on Aug 1^st, 2003, 5:16pm

Welcome, TP, sorry for your pain you sound just like me, except I get 4 to 5 of these a day. Hang in there they will go away, but you kinda have to put your life on hold a bit.

I'm a Bud man myself, and I miss it but I've been down that road before and don't wanna go again, at least until this cycle is gone. week 4 here too.

Vibes to ya and sorry your here.

LEE

Title: Re: First Timer
Post by Charlie on Aug 1^st, 2003, 5:21pm

Welcome aboard and sorry you have to deal with this horror. Stick around. Ideas abound, good and strange. This one qualifies as both:

Dr. Wright’s Circulatory Technique

This technique significantly helped to shorten my cluster headache attacks.

It involves concentrating on trying to redirect a little more circulation to the arms, hands, or legs. It can described as a kind of internal “flexing” or “push.” Increased circulation will result in a reddening and warming of the hands. Try to think of it as “filling” your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. If you do, it never will. Every now and then it can work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use this method. The doctor, while holding his arm at his side, 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 the same day. 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 dealing with this horror, I always gave it a try as I had nothing to lose but pain. I am not sure what mechanism is triggered by this method but whatever it is, at least indirectly kills the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes real concentration.

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 beast. 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.

Give it your best shot and I wish you the best of luck fighting this demon.

Charlie Strand

Title: Re: First Timer
Post by eyes_afire on Aug 1^st, 2003, 6:08pm

Hi Toronto. Sorry you're in cycle. My sleep test revealed an abnormally early onset of REM sleep. I know of the sleep paralysis you're talking about. Very frightening, especially when accompanied by those hallucination-like images and sensations. Even when you do know what it happening, it is one of the most frightening things ever... especially when you slip back into the dream-world. It feels like suffocation. The pits of hell. My neurologist believes that there is a higher incidence of sleep abnormalities among clusterheads. Theoretically it wouldn't surprise me when you consider that sleep is regulated by the hypothalamus (that thing which is also hypothetically malfunctioning to cause CH).

Welcome aboard

--- Steve

Title: Re: First Timer
Post by SommelierCH on Aug 2^nd, 2003, 5:48am

As always a double edge welcome. Sorry you had to find us, but glad you are here. Put on a hard hat, mouth guard and thigh high boots and wade right in.

What works for me is a triptan tab, Maxalt MLT 10mg. or Zomig ZMT 5mg. (fast acting, quick dissolving tablets, that enter the body under the tongue, bypassing the digestive system. NOT the regular tablets) combined with oxygen.. My triggers are alcohol (even the smallest amount, like a non-alcoholic beer) and bright light in my right (cluster side) eye. If the injections are giving you a problem, you might think about the tabs.

David J.