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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Blah
        
(Message started by: _L_ on Jan 25^th, 2005, 2:46am)

Title: Blah
Post by _L_ on Jan 25^th, 2005, 2:46am

Hey guys,

My name is Lawrence, and i'm 27. I live in Gary, Indiana, and i'm a student at Devry University over here in nearby Tinley Park, Il. I've been suffering from cluster headaches off an on, since I was in the 7th grade.

I was wondering, if you guys had any "tricks", or "methods of coping" with the pain of the cluster IN PUBLIC?......Sometimes these monsters attack while i'm at school, in the lab, or in the middle of lecture, and i'm forced to "pretend" nothing is wrong with me, because i'm in class, I can't do all the shouting and crying like I can at home. I have to sit there and bare with the pain.

I take Verapamil prescribed by my neuro, 240 mg a day. I have one cluster headache a day, lasts for about an hour.
During that hour, the pain is unbelievable. Its like something straight from hell. I have been practicing coping methods, for when they strike....I'm to the point now, where I can actually sit still in a chair while they attack.

I have some tinted glasses, that I wear for when they strike, my right eye becomes bloodshot red, and it tears. So the tinted glasses have hidden the visual signs of my illness. Plus it helps lessens the effects of "photophobia", or sensitivity to light.

When i'm in class, and I feel the cluster about to strike, I usually step outside from class, to get some fresh air, I don my glasses like some type of superhero, then i prepare myself for an hour of "rock n roll".
I try to concentrate on "other things", besides the pain. In the past, thinking about the pain as it was happening only made it worse, knowing that, I force myself to concentrate on hot chicks, or cars or something. Anything to help get my mind off of trying to "dance with the devil in the pale moonlight".

It isn't easy.

So I ask, what are some methods you guys use, when, you're out and about, and the cluster strikes?

L

Title: Re: Blah
Post by Mr. Happy on Jan 25^th, 2005, 2:57am

on 01/25/05 at 02:46:45, _L_ wrote:

So I ask, what are some methods you guys use, when, you're out and about, and the cluster strikes?L

Triptans, man, triptans. Never leave home w/o one. I always cart canned air with me, but some folks think it detracts from their apparel de jour.

I could care less.
RJ

Title: Re: Blah
Post by BobG on Jan 25^th, 2005, 4:20am

Mr. Happy is correct about the triptans. Talk to your doc about Imitrex or another triptan. Also you may want to talk to your doc about upping the Verapamil a little. Some folks here are taking 2 or 3 times more than you.

Title: Re: Blah
Post by E-Double on Jan 25^th, 2005, 12:39pm

Honestly....

You sound like you are doing a pretty kick a$$ job coping right now!!!

Aborting .......listen to the wise men above me.

If you can't get meds for some reason you might be able to alleviate some of the discomfort with MEGA caffiene...your a student so just increase usual dosage slightly ;) and...
you could by those disposable icepacks form a drucgstore...the kind which you "pop" and they instantly freeze up....place it discretely on your neck or your noggin....

Hang in there man and if this is something that does need to be explained to your professors you can print out "colleagues letter" from www.clusterheadaches.org It's been helpful on a few occasions for me.

Good luck and keep fighting the good one!

Eric

Title: Re: Blah
Post by Biker on Jan 25^th, 2005, 4:17pm

I tell others "I cannot talk right now---I need time." If they proceed , I enlighten them to the fact that I have a rare blood pressure related medical thing that results in a monsterous headache, and I need some time. If that doesnt work, I tell people I have brain herpes, and need time to function. And if that does not work, I tell them to get the fuck away and come back in an hour.
None of the above seem to help. I have lost employment, relationships, and respectibility from those I use to encounter with. I have found it better (for me personally) to just not talk, and move away from people whenever possible. Yea, be polite, tell them of your rare medical dis-function, and move on. I keep bottled oxygen handy (within a block) and have learned to deal with this delimia.

Title: Re: Blah
Post by thebbz on Jan 25^th, 2005, 4:31pm

IMITREX or plan ahead and have some alternative such as a predetermined place to run. Or maybe take the mini cam and record a lecture during the five minites it takes for the trex to kick in. If the school has a counsler check with them for accomidations.???? Maybe slam a couple of Dews, to delay the beast for a while? Different strokes for different folks. My point is many work through episodes and there are many things you can do. Don't panic sitting there and not addressing the pain is not an option. Find a nice place in the back where you can inject the trex without leaving.
Hope you find something that works for you.
Personally I have plan B, hide to avoid hurting someone, inject asap, return to the work of the day.
Dont care what others think, they wouldn't understand anyway.
BB

Title: Re: Blah
Post by BobG on Jan 26^th, 2005, 2:58am

on 01/25/05 at 16:17:10, Biker wrote:

If that doesnt work, I tell people I have brain herpes

That's a good one! :D
And tell them it is very contagious. The vapors from your sinus carry the virus and it would be in their best interest to just go-the-hell-away.

Title: Re: Blah
Post by taraann on Jan 26^th, 2005, 2:57pm

Nice title! ;;D Welcome to the board L. It sure does sound like you're doing a kick ass job of dealing with your CH! You've got some great suggestions from everyone and I don't have anything to add just wanted to say hi and welcome!

Title: Re: Blah
Post by sandie99 on Jan 26^th, 2005, 3:59pm

Hi Lawrence!

Welcome to CH family. :)
My advice: never go anywhere without your painkillers (maxalt in my case). That always helps.

In the beginning when I did have any meds I was forced to just stand the hell without any relief...never wanna go through that one again. I study at a university, too. I used to walk out of classes when CH hits... these days I just take my med and pretend like there's nothing wrong. ;;D

Good luck with the dance! :)

Best wishes & PFdays,
Sandie99

Title: Re: Blah
Post by _L_ on Jan 26^th, 2005, 6:25pm

thanks guys for all of you're responses.....its tough sometimes, but it makes me smile knowing that i'm not alone.....thanks for welcoming me.

Title: Re: Blah
Post by MOMO3 on Jan 26^th, 2005, 7:39pm

I live in Tinley Park, near the Tweeter Ctr. My brother has Clusters and has for 11 years or so. Welcome to the site and glad you found us. Hope you can find the info here you need to help with your pain.

Michelle

Title: Re: Blah
Post by Kris_in_SJ on Jan 26^th, 2005, 8:34pm

Just a thought .... Personally I'd avoid the word "herpes" in any conversation about your condition. Next thing you know, they'll be making you sit in an isolation room watching a video of some kind, instead of taking a class.

Sounds like you're doing a great job of coping as best you can. From a woman who understands both the first (CH) and the second (labor) worst pains known to woman/man, I personally use Lamaze breathing and mantras when I'm in the throes.

I also highly recommend Imitrex auto-injects. A 5-minute trip to the bathroom and your pain is gone. Ask your doc.

Good vibes and PF wishes, my friend,

Kris

Title: Re: Blah
Post by marcelonyc on Jan 27^th, 2005, 1:59am

Hey There,

Courage my man, courage. And it sounds like you got plenty of it.I am also a student and my attacks started during the mid of last semester. Like everyone has posted, immitrex works to abort for me. my insurance will not pay for 02, but i don't think it would be practical for me to take o2 w/ me to school since i live in NYC and there is no school campus.

But what helped me tremendously was to reach out to the school, and the chair of the dept. and explain the situation so that when i needed to miss class or take a break, they knew why. the result for me was one in which not only were the teachers understanding, but they were (and are as i received a couple of incompletes without penalty) willing to work something out.

If there is someone you trust in school, like a friend or mentor or someone, i suggest to reach out so you don't feel so alone. i know it's a very vulnerable thing and NO ONE seems to understand, but it may help with the feelings of isolation. And for those who you may not be that close to you, just walk away and take care of yourself. Sufferring in silence is better than pretending to not feel pain amongst loud and boisterous people.

good luck with your studies and hang in there.

Marcelo