Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Posts >> Caffeine - good news!
        
(Message started by: brain_cramps on Jul 15^th, 2004, 8:00am)

Title: Caffeine - good news!
Post by brain_cramps on Jul 15^th, 2004, 8:00am

More than 20 yrs ago when I was first diagnosed, the doc told me to quit drinking coffee while in cycle. Until a couple years ago, I had never talked to anyone besides doctors about CH so I always quit coffee completely while in cycle.

When i got here, i was surprised to see that quite a few people had listed coffee as a 'non-med abortive'.

In March, I thought I was going into cycle so I quit once again. Since I had been drinking more coffee since quitting drinking last summer, I was immediately hit with caffeine-withdrawal headaches. While they had similar symptoms to CH (one-sided, temple/eye/jaw) they were nowhere near as painful.

Since March, I've been drinking decaf most of the time (kinda tastes like coffee :P).

Last Friday night, I got hit. Saturday, I got my o2 at home for the first time even though the o2-store was closed! So far, I have had limited success with the o2 (1 out of 8 HAs aborted) but am gonna keep trying since it has worked in the past in ER.

I have had a LOT of luck drinking HOT STRONG coffee as soon as I get hit. I've started putting a pot on when I'm crashing. (i only sleep 2 hrs at most while in cycle. 4 hrs while out of cycle since quitting drinking). As soon as I wake up, I grab a big mug and start chugging regardless of if I'm getting hit or not. It seems to be working everytime.

I realize that this probably won't work for most. I'm not sure if its because I haven't had any caffeine for months but I realize it could quit working tomorrow. As long as it keeps working, I'll keep chugging. ;D

grant

P.S. On Tuesday, I was at the hospital visiting dad (he's back in again) and got hit. After trying to hide it for a few minutes, I eventually headed downstairs to ER hoping that I'd be able to get some o2. Absolute waste of time! When I finally got o2, it was at 3Lpm and through a nasal cannula (sp?) and didn't work at all. After about an hour of waiting for a non-rebreather mask (or anyone to talk to!), I gave up and left since the pain was beginning to subside. I was told the following:

"NOBODY would ever use o2 at more than 10Lpm." (would have laughed if I could)

"A non-rebreather mask would do nothing more that a cannula." (again - would have laughed if I could)

"EVERYBODY knows that imitrex only comes in pill form." (actually managed to laugh!)

"There are only a few sick people left in line in front of you so we might be able to get to you in a while." (was speechless! I got out of there quickly before my temper got the best of me!)

Title: Re: Caffeine - good news!
Post by Redd715 on Jul 15^th, 2004, 8:33am

I swear by caffine as well Grant!! Not as an abort....but to chase the shadows....and that f*cking imitrex hangover. The stronger the better. Tuesday all day at work I was sucking down as much as I could drink. had been hit every two hours all night long...and then once again just as I was to punch in at work....should have seen the co-workers faces go white as I run to my desk to grab my kit and hightail it to the storage room. No body messed with me the rest of the day...guess I looked pretty rough....

Title: Re: Caffeine - good news!
Post by alleyoop on Jul 15^th, 2004, 8:39am

Hey Grant,

Very interesting post, buddy! I guess that's why I never evern tried an ER (though I've come close a couple of times). After all the horror stories like your's Ive heard, I figured, why bother! Sorry to hear about your dad. Hope he gets better.

Keep doing the coffee thing as long as it works! You got the right o2 set-up? 1 out of 8 sucks!

Good to hear from you.

With a prayer for your dad and wishing you PFNAD,

........................................................alley

Title: Re: Caffeine - good news!
Post by vig on Jul 15^th, 2004, 11:40am

My neuro told me to drink at least 3 caffeinated drinks a day. My ex could abort a migraine with a shot of espresso, if taken quickly enough.

Title: Re: Caffeine - good news!
Post by marfanoidus on Jul 15^th, 2004, 3:01pm

Very interesting!!!! Here's another anecdotal addition to this thread:
It had been about 3 years since the last CH cycle. Starting in February, I began taking antidepressants, and took them for about 4 months, until I told my doc I wasn't going to take them anymore, whether he approved or not.
I had been a heavy coffee drinker for 14 years, but woke up one day in June, just before I started weaning off the Effexor, and couldn't stand coffee, not even the smell. "How odd," thought I.
As the Effexor got out of my system, the CH cycle slowly grew. I say slowly, because it started out with minor headaches once or twice a day and grew in frequency and severity for almost 2 weeks until I was in the full-blown demon death grip.
My doc, Dr. Laurie Meadors, in Austin, Texas, is truly an angel. And she was quick to tell me that I had probably been in the CH cycle for some time, but that antidepressants can sometimes be effective in controlling them. And, she said that caffeine can sometimes help with headaches, even clusters, but that the benefit is usually only in reducing the frequency of CHs, not their severity, and even then only in some people. If I remember correctly, her words were "As you probably well know, cluster headaches are a demon who answers only to its own calls". (If you're reading this and don't have CHs, don't worry if you don't understand).
Caffergot, an ergotamine, ges part of its name from the fact that it contains caffeine.
Anyway, I'm drinking coffee again. Hell, I'd eat horse shit if it would stop these damned headaches.

Title: Re: Caffeine - good news!
Post by writer on Jul 15^th, 2004, 3:59pm

Grant,

In my 40-plus years dealing with clusters, when the only help was Sansert, I made it a point during a cycle to brew up a strong, hot pot of coffee every night before going to bed.

Then, when awakened by a vicious headache I would stagger to the kitchen and heat up some coffee, practically to a boil. No instant--it has to be brewed coffee. I would drink cup after cup after cup during the height of the pain. When it subsided and I could go back to bed, I was, of course, exhausted.

But it was interesting: that huge amount of caffeine in the middle of the night never so much as bothered my sleep (when the pain ended) for a second. I slept fine. So don't fear that--

I drank it during a "hit" in the daytime, too. With all the meds I read about today, people probably think it's silly to load up on coffee during a cycle, but in my case, it did help. Also, when you're drinking hot coffee with one eye shut and weeping in the middle of the night, you're probably too busy to think about suicide, right?

(Just kidding.) Thank God, I don't have the headaches since five years ago. What a blessing! Clusters merely left me with sudden hair loss and an off-and-on eye twitch, particularly in times of stress. (Never had such before I had clusters.)

In any event, this brings every good wish for more pain-free days and nights for you and a remission SOON. Meantime, brew that coffee. . .

Writer

Title: Re: Caffeine - good news!
Post by Opus on Jul 15^th, 2004, 4:56pm

Grant,
I found out that Nasal Imitrex would only work for me if I had a cup of coffee right after. If you could quite during your remission and only drink coffee during your cycle you would be better off. It is hard but I have aborted a 10 by drinking coffee and chain smoking. Don't forget to up your stress level during a cycle. I once got Imitrex at the ER and they injected it into a muscle, they don't have a clue.

Opus/Paul

Title: Re: Caffeine - good news!
Post by ExplodingEyeBall on Jul 16^th, 2004, 10:41am

on 07/15/04 at 16:56:16, Opus wrote:

It is hard but I have aborted a 10 by drinking coffee and chain smoking. Opus/Paul

This is exactly what I do to knock down my CHs when I get woke up by one.

I thought I was nuts to be up at 2:00 A.M. sucking down coffee and chain smoking, but it shortens the duration of my night time HAs from 2+ hours (Yes, I said 2+ hours of pure hell.) to about 30 minutes.

Title: Re: Caffeine - good news!
Post by Charlie on Jul 20^th, 2004, 1:05am

This may or may not mean anything but in 1988, I was finally able to control the kind of coffee I guzzled all day long and it is very very strong. Caffeine became my life. My CH began get scarce about this time and finally left entirely in 1991.

It's likely a coincidence but I've been trying to find a reason why they ended. Just something that I think of now and then. Certainly didn't hurt.

Charlie

Title: Re: Caffeine - good news!
Post by Mr. Happy on Jul 20^th, 2004, 1:16am

on 07/20/04 at 01:05:05, Charlie wrote:

This may or may not mean anything but in 1988, I was finally able to control the kind of coffee I guzzled all day long and it is very very strong. Caffeine became my life.

See. The Swede's are faulted as well. We''re all junkies of one ilk or another. Svenn doesn't get a vote in this one.

Only users lose drugs,
RJ