Clusterheadaches.com Message Board


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

        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Caffiene - Cause or cure?
        
(Message started by: jenrob2006 on Jul 5^th, 2006, 1:48pm)

Title: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 5^th, 2006, 1:48pm

I have avoided caffiene all of my adult life because my neuro told me that it was a magor trigger for CH along with nuts, cheese and chocolate. After reading message after message here about coffee, red bull and other caffienated stuff helping, I have to ask the question. Should I be avoiding caffiene or seeking it in the midst of my pain? I am afraid that all of my doctors are just grasping at straws and I will soon not be able to eat or drink anything because it will be considered a trigger.

Title: Re: Caffiene - Cause or cure?
Post by georgej on Jul 5^th, 2006, 2:06pm

Caffeine is my friend. Oh yes, indeed. In cycle, I drink coffee by the pot, not the cup.

Nuts, cheese and chocolate never made any difference to me one way or the other. The only caveat I go by, in cycle or out, is to eat lots of fresh fruits, vegetables, and follow a good balanced diet. The more strength you have, the better you can deal.

.....and, oh yes, did I mention lots of caffeine?

Regards,

George

Title: Re: Caffiene - Cause or cure?
Post by Bob P on Jul 5^th, 2006, 2:25pm

I think you should be looking for another doctor. The list you were given is the typical migraine triggers. The doc obviously doesn't know clusters very well.

Title: Re: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 5^th, 2006, 2:33pm

He was my first and only doctor in Florida. We just moved to South Carolina last month and I have been seeing a physician's assistant in the neurologist's office. He seems to know a lot about CH. The problem is that it was so pounded into my head about all the avoids that it became second nature never to drink coffee or reg soda, etc. The only thing this new dr. told me to avoid was alcohol, which I knew was a trigger from personal experince.

So, caffiene is good? [smiley=huh.gif]

Title: Re: Caffiene - Cause or cure?
Post by georgej on Jul 5^th, 2006, 2:39pm

on 07/05/06 at 14:33:57, jenrob2006 wrote:

So, caffiene is good? [smiley=huh.gif]

Is water wet? Is the pope catholic? Do bears...umm...do doo-doo in the forest?

;;D ;;D

George

Title: Re: Caffiene - Cause or cure?
Post by Guiseppi on Jul 5^th, 2006, 2:50pm

I used to think coffee was a trigger because the headches hit about 8:30, after my morning coffee. Have since learned it's not only NOT a trigger but can be an abortive. My triggers when on cycle are alcohol, especially grain alcohol, sleep disruptions and heavy stress. Which is really funny because a lot of people stay stressed to AVOID getting hit!

Triggers seem to vary greatly from person to person, a lot of trial and error. I'm also seeing a physicians assistant thse days at neurology. She is somewhat knowledgeable but more importantly is open minded and listens to what I bring her from this site. Best of luck to you.

Guiseppi

Title: Re: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 5^th, 2006, 3:01pm

Is water wet? Is the pope catholic? Do bears...umm...do doo-doo in the forest?

I might be going out on a limb here, but I'm thinking that is a yes. I'm on my way to Dunkin' Donuts for a super-large coffee right now! [smiley=sayyes.gif]

Title: Re: Caffiene - Cause or cure?
Post by LeLimey on Jul 5^th, 2006, 3:03pm

Hi Jen
caffeine works because it is a vaso constrictor and in a hit, the blood vessels in our brain swell dramatically. It is different to other HA types in that our vaso constricting little friend may cause headaches for people with normal sized blood vessels. caffeine with taurine, ie red bull and its equivalents work even faster as taurine intensifies the effect of caffeine so be careful not to drink too many of them in a day. It gives me the jitters but it gets rid of the pain!
I hope that helps explain a bit as to WHY caffeine works for us.
Helen

Title: Re: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 5^th, 2006, 3:12pm

I am learning so much from you all. Is that why during an attack the left side of my forehead has a major protruding lump? I thought I knew so much about this condition, but I am learning something new everytime I get on here. Thank you.

Title: Re: Caffiene - Cause or cure?
Post by LeLimey on Jul 5^th, 2006, 3:20pm

Jen we will help all we can! Believe me when I say we all came here knowing big fat nothing ;;D It won't be long before you're sharing tips and info believe me!
Some people get lumps, stiff necks all sorts of things like that. I don't know why but I can reassure you on two things, you aren't alone in it and its not anything to worry about.
Helen.

Title: Re: Caffiene - Cause or cure?
Post by georgej on Jul 5^th, 2006, 4:23pm

on 07/05/06 at 15:20:41, LeLimey wrote:

Some people get lumps, stiff necks all sorts of things like that. I don't know why but I can reassure you on two things, you aren't alone in it and its not anything to worry about.
Helen.

Couldn't agree more. I know it's unbelievable, but as intense as the pain is and as weird and upsetting as the physical effects are, no permanent damage seems to be done. It's not fatal.

Title: Re: Caffiene - Cause or cure?
Post by chewy on Jul 5^th, 2006, 4:56pm

Quote:

I have avoided caffiene all of my adult life because my neuro told me that it was a magor trigger for CH along with nuts, cheese and chocolate

Tell your Doc to throw away the AMA Journal dated 1968.

Those are migraine triggers.

Title: Re: Caffiene - Cause or cure?
Post by brewcrew on Jul 5^th, 2006, 5:35pm

Smoking also constricts blood vessels. Hmmmm......

You should start smoking if you don't already. ;)

Title: Re: Caffiene - Cause or cure?
Post by doug1923 on Jul 5^th, 2006, 5:41pm

Caffeine good....This board very good! Years ago, at age 37, I met the beast. I was prescribed fiorinal, then switched docs and got imitrex nasal. I would thrash in agony at 2:00 a.m. while they took their time working. The clusters usually came at night, waking me from sleep. Sometimes during the day but not often. Imitrex was faster at knocking them out, but left a bad taste in my mouth and a weird feeling in my head the next day. The attacks went away for a few years, came back, went away again, and just when I thought they were finally gone, recently came back. I think some viral thing triggered them, but I'm not sure. Not as bad as the first rounds, but still annoying, depressing, disruptive etc. I found this board, and stumbled on the threads regarding energy drinks. Stuff I'd usually never be caught dead drinking. I'm wired/anxious enough without caffeine. But I bought some Sobe Adrenalin Rush from Walmart to try. Not brand conscious, just all they had in the 8oz. To make a short story long, when I've been hit the past week or so, I head for the fridge and chase an excedrin with an 8oz can of that. Within a few minutes (5-10 or so), I'm OK and actually go back to sleep. Normally caffeine in the middle of the night (or anytime) would keep me up, but for some reason that jolt doesn't. Maybe it's the relief...I'm not perfect the next morning (a bit tired), but I'm thankful I made it through the night without bashing my head into the wall. It works fast for me and I almost enjoy winning the war so quickly. Hope it keeps up its effect....I'm not sure the excedrin is necessary, but I look at as a short-kick-longer-lasting kind of thing.
OT a bit: now I'm experimenting with Melatonin. Took 3g's last night before bed and did not get a headache. First night in about 7 without one. So go for the caffeine-taurine combo and you might be glad you did. YMMV...good luck!

Title: Re: Caffiene - Cause or cure?
Post by floridian on Jul 5^th, 2006, 6:26pm

Short term when you are getting hit - beneficial. Long term heavy caffeine consumption and overall cluster activity? No one knows for sure, but I think it may make things worse for some.

Title: Re: Caffiene - Cause or cure?
Post by jon019 on Jul 5^th, 2006, 7:06pm

Hi Jen,

If it is any help at all, in cycle, my particular triggers are numerous including alcohol, strong smells, cheese, certain fruits, barometric changes, changes in routine, changes in sleep, and on and on...

What I do find, is that OUT of cycle, NONE of these are a trigger (possible exception of MSG) and I can eat, drink and be merry. My advice, experiment when out out cycle and see what may be a problem. It is bad enough going thru life fearing the beast without denying yourself some of lifes pleasures when he is away.

BTW, in cycle, I use caffeine (in the form of double strength coffee, scalding hot) as an abortive. Somewhat effective, but timing is critical, at the wrong time or too much and it becomes a trigger.

Regards

Jon

Title: Re: Caffiene - Cause or cure?
Post by Racer1_NC on Jul 5^th, 2006, 7:18pm

on 07/05/06 at 18:26:20, floridian wrote:

Short term when you are getting hit - beneficial. Long term heavy caffeine consumption and overall cluster activity? No one knows for sure, but I think it may make things worse for some.

I rarely drink caffeine unless I am shadowing or taking hits. During my last round of hell I tried mucho caffeine...while it worked for the first couple of days like a charm...then it seemed to make the hits come more often. I stopped the caffeine and they still came, just less often.

YMMV

Bill

Title: Re: Caffiene - Cause or cure?
Post by vig on Jul 5^th, 2006, 7:55pm

on 07/05/06 at 13:48:05, jenrob2006 wrote:

My Neuro told me to drink at least 3 cups of coffee a day.

I think the lesson is that doctors don't know.
Since most of us have to function as guinea pigs, I suggest you try it for a while and find out for yourself.
my $.02

I drink one large cup per day.

Title: Re: Caffiene - Cause or cure?
Post by Charlotte on Jul 5^th, 2006, 8:09pm

we are all different. I think most of us think of caffeine as our friend.

Click on the OUCH website to your left and see if that picture matches where you swell up.

I haven't tried red bull yet, just coffee.

Charlotte

Title: Re: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 6^th, 2006, 9:16am

I am learning more and more that these doctors are just trying trial and error and it is cheaper for me to do that myself. I am def going to try caffiene, maybe those supplements Barry was talking about. I am at my wits end with all these meds and now I have an excuse to drink coffee. ;;D

Title: Re: Caffiene - Cause or cure?
Post by BMoneeTheMoneeMan on Jul 6^th, 2006, 9:42pm

well, I think caffeine helps too. In the morning when I wake up shadowing or with a CH, I try to run downstairs to make coffee before I take O2. Sometimes I need to get on the O2 stat though.

One thing I have noticed, the variations in your caffeine intake can matter more than just getting caffeine. However much you use daily, try to keep it regular......i.e. dont drink 10 shots of esspresso one day and none the next day. That change KILLS me.

Even an excedrin pill has 65mg of caffeine, that is more than cola. Some people cant take the pain killers though.

PF wishes to you
BMonee

Title: Re: Caffiene - Cause or cure?
Post by CHvsTN on Jul 7^th, 2006, 9:23am

I hope it's okay 'cos I eat coffee straight from the jar. :o

Title: Re: Caffiene - Cause or cure?
Post by Katherinecm on Jul 7^th, 2006, 11:12am

At my neuro appt yesterday I told her that drinking a redbull with my Lortab seems to make it work much faster. She said that didn't suprise her at all, that for little kids with bad headaches she often prescribes 4 advil with a can of mountain dew as what to take during the schoolday when they need to be alert. She said the caffeine is a potent vasoconstrictor and makes any painkiller work faster.

Title: Re: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 7^th, 2006, 11:33am

That is def good info. Thanks.

Title: Re: Caffiene - Cause or cure?
Post by MorePower on Jul 9^th, 2006, 8:54am

I keep a pot ready to go 24 hrs a day. I will drink coffee when I have an attack unless I am sleeping and use imitrex and want to go back to sleep unless its like 4am and then I am screwed and up for the day. But if I get an attack I will drink 2 to 3 cups as fast as I can. I have done this by the advice of the board. If I am out of home, I hit a Tim Hortins as fast as I can....( in Canada).
I dont like Red Bull(makes me wanna vomit) because I take oxycocet for my back and makes me to hyper, or I will down a Coke. Anything to help the pain disapate faster. Doesnt always help but its worth a shot. I do anything to help.

Title: Re: Caffiene - Cause or cure?
Post by sandie99 on Jul 10^th, 2006, 3:39pm

I keep couple cans of Red Bull/other energy drinks(with the same amount of caffeine and taurine) in my fridge, so when I get hit, I have treatment always closeby. With my head cold energy drinks work quicker than any other med I have tried so far. :)

Otherwise I don't use caffeine. I gave up drinking fizzy drinks and I have never liked drinking coffee. But energy drinks with caffeine is my best aid with ch.

Best wishes & PF days,
Sanna

Title: Re: Caffiene - Cause or cure?
Post by jenrob2006 on Jul 11^th, 2006, 2:49pm

OK - do they make any of these drinks that dont taste disgusting. I tried Rumba, which is an energy drink that is suppossed to taste like citrus juice, yuck! I guess in the scheme of things, bad taste is better than the pain, but where are the chocolate energy drinks?