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        Cluster Headache Help and Support >> Cluster Headache Specific >> Is caffeine contributing to my CH syndrome?
        
(Message started by: Dave on May 28^th, 2006, 8:30pm)

Title: Is caffeine contributing to my CH syndrome?
Post by Dave on May 28^th, 2006, 8:30pm

Faced with this evidence:

#1) Bunk or not, it has been suggested that CH sufferers are statistically more likely to be heavy users of alkaloid stimulants (caffeine and nicotine)
#2) Caffeine and nicotine are chemically similar and both could affect body rhythms, which can be related to CH syndrome.
#3) I don’t smoke, so nicotine is out as a factor.
#4) My first experience with a rogue CH attack was as a teenager during a summer when I was pounding down Dr. Pepper’s.
#5) My CH syndrome truly broke out at 21 when I first started drinking coffee.
#6) My second worst CH cycle came during a period when I was unemployed and at home in front of the kitchen computer all day in arms length of the coffee pot. I was drinking at least one full pot a day, which was much more than my normal habit.
#7) My very worst CH cycle came after I had found a job and had multiple Starbucks along my commute. At some point in the months preceding the cluster, I became addicted to Venti mocha lattes (“Venti” is Starbucks lingo for “supersize me”).
#8) During this bad cycle, I definitely noticed on at least one occasion where a cup of coffee triggered a day time cluster headache attack, which are much less typical for me.
#9) I quit caffeine, and my cycle ended abruptly (perhaps a coincidence; it was in its 3rd month).
#10) I have made an effort to remain off of caffeine and have subsequently not had anything above a kip 1 for the last year. This might be a record. During the times of the year when I normally get hit, some twinges and very low level shadows have come instead.
#11) I can directly link with certainty some low level kip 1 shadows to having strayed from my no caffeine diet by consuming something relatively low in caffeine (e.g., decaf coffee, a cup of hot chocolate, a few chocolate chip cookies, iced tea, white tea)

Bottom line is this: It really feels like the beast just can’t seem to take hold without caffeine in me. I am going to stay 100% caffeine free and keep you posted on the results.

It goes without saying that quitting caffeine is not going to work for everyone, but I certainly welcome others to join in my experiment of going 100% free of alkaloid stimulants.

And by the way, quitting coffee isn’t as bad as I though it would be. You get a withdrawal headache for a day or two, but heck, that type of headache is small potatoes to folks like us. I’ve replaced the morning hot drink with herbal tea. My favorite is vanilla red bush tea. Amazingly, the thought of coffee doesn’t interest me a bit.

Title: Re: Is caffeine contributing to my CH syndrome?
Post by E-Double on May 28^th, 2006, 8:37pm

Want to really be scientific?

Start drinking Caffiene.
If CH comes back then decrease caffiene.
If CH decreases again, you may have your answer.
If not, oh well.......it was coincidence however you enjoyed PF time.

Enjoy it!!!!!!!!

Title: Re: Is caffeine contributing to my CH syndrome?
Post by Dave on May 28^th, 2006, 8:52pm

on 05/28/06 at 20:37:46, E-Double wrote:

Or, I can just stay off caffeine, and if they come back, there's the answer. Or if they stay away, or perhaps come back weaker someday, then there's the answer too.

And by the way, I don't think "decreasing" caffeine is enough to have the impact I'm looking for, especially if decaf coffee has enough caffeine (about 2% of regular?) to cause a shadow.

I am going for zero alkaloid stimulant:
No coffee, no decaf coffee, no black tea, no green tea, no white tea, no decaf tea, no iced tea, no no chocolate, no caffeinated soft drinks...

Title: Re: Is caffeine contributing to my CH syndrome?
Post by MJ on May 28^th, 2006, 11:06pm

I was going to stay away from this thread untill you said no chocolate.
There is no point in denying the true goodness of life. We gotta live for gods sake. Without chocolate whats the point.

Caffeine for me is one of the great aides in the treatment of clusters. In fact I am a firm believer that anything that will provide stimulation will help in beating down the effects of CH.

But then I have never had a kip 1 either.

Title: Re: Is caffeine contributing to my CH syndrome?
Post by Guiseppi on May 29^th, 2006, 12:06am

It's funny how many people on the site use caffeine, either thru red bull or just coffee, to abort headaches. When I'm on cycle, caffeine is a trigger for me. Avoiding coffee won't guarantee I don't get hit, but drinking coffee will often trigger an attack, when on cycle.

I suspect the best you will find is stopping caffeine might reduce the intensity, or the frequency of the attacks. I do hope you find some relief from these things. And I hope you have some type of preventative and some type of abortive meds in your arsenal. Good luck!!!

Guiseppi

Title: Re: Is caffeine contributing to my CH syndrome?
Post by Jasmyn on May 29^th, 2006, 3:25am

Yes, we all differ. Caffeine helps to abort some shadows, a strong cuppa java makes the meds work faster and the Taurine and caffeine combination in some energy drinks, like RB, definitely helps me abort and sometimes prevent a full blown attack.

When in full cycle, it is always touch and go but like my trusty ice packs, I cannot afford to give up on my caffeine.

Good luck to you though, if it is your trigger but I do not think it is the cause of this condition.

Title: Re: Is caffeine contributing to my CH syndrome?
Post by sailpappy on May 29^th, 2006, 9:55am

;;D I went on the strict Migraine diet that excludes all of the substances you mentioned, as well as many more.
there was no, and I mean absolutely no difference in the frequency or Kip Level of my attacks, so after 5 years of following my every Culinary intake by documenting everything I did and ate I decided that it was not for Clusterheads!
I actually had more results when I eliminated Lactose products, not to say that there were any signifigant results from that either, concerning CH any how! John

Title: Re: Is caffeine contributing to my CH syndrome?
Post by vze2n4nj on May 29^th, 2006, 5:18pm

I don't have caffeine of any sort and I still get my cycles. No cola, coffee, and very rarely chocolate...

wait, come to think of it....I just started a new job, moved, and then a cycle started in a month that I never get them-May! I've always got them in September/October and January/February. I began drinking coffee at the job and tea at home! this is inconclusive evidence, becuase it could be any one of those factors that started this cycle. however, I stopped last week because I read caffeine may worsen the CHs, and the cycle has progressed in its normal agonizing way. doesn't caffeine constrict blood vessels? if it does, it may help rather than hurt. I dunno.

Title: Re: Is caffeine contributing to my CH syndrome?
Post by BMoneeTheMoneeMan on May 29^th, 2006, 10:42pm

Well, I am not a doctor, but people dont even call me Dr MoneeMan.
I have noticed that as long as I use the same amount of caffeine every day, it makes no difference. I used to only drink coffee during the week, and on the weekend I wouldnt drink any. I think that change in caffeine intake definately stirred the beast.
I think whether you use a little, a medium amount or a lot of caffeine it doesnt matter, as long as you keep the intake regular.

Also, a little trick that quite a few people here do is drink caffeine immediately at the onset of an attack......some feel this helps.
I know that when I awaken with nagging shadows in the morning, the caffeine helps it go away.

But, thats just me
PF wishes
BMonee

Title: Re: Is caffeine contributing to my CH syndrome?
Post by BlueMeanie on May 29^th, 2006, 11:03pm

So strange how things affect us all so differently.

Coffee doesn't do anything for actual CH attacks, but it is the best remedy to assist in those annoying shadows. A pot a day keeps the shadows away :o

Title: Re: Is caffeine contributing to my CH syndrome?
Post by sailpappy on May 30^th, 2006, 9:53am

;;D ;;D I still haven't seen mentioned that Caffeine is actually an Old Standard abortive, Caffergot?? Never helped me but I do recall some of the episodics got releif from using it and many use to swear that drinking a pop or a few cups of Java would abort their attacks??
Pappy

Title: Re: Is caffeine contributing to my CH syndrome?
Post by Charlotte on May 30^th, 2006, 3:35pm

I don't smoke but sometimes I do ask people to exhale in my direction. I love coffee.

I'm pretty extreme, so at one time or another I have eliminated for a period of time anything that I ever consumed while getting hit - to no avail. I have given up meds and cold turkeyed it and had similar variations in patterns that I have when taking meds. Mine usually hit at an intensity and time frame and stick to that pattern for between 1 day to 12 weeks. Sometimes I get a day where the timing is different between every hit.

Right now, i feel very lucky because i haven't used any meds for several days. I have trouble gauging things to the KIP scale, but I gauge more like the earthquake scale.

Sometimes the ones that don't hurt as much cause as much damage to my memory and mind. It's sort of like watching someone you love get alzheimers, only it's you.

Charlotte

Title: Re: Is caffeine contributing to my CH syndrome?
Post by Katherinecm on Jun 1^st, 2006, 9:37am

The first thing I tried was cutting out caffeine. It made no difference for prevention. Red bull does help abort shadows.

Title: Re: Is caffeine contributing to my CH syndrome?
Post by Bob P on Jun 1^st, 2006, 9:47am

I drink the same amount of coffee every day. My cycles come every 3+ years. If caffine is a factor, why do I go 3+ years with caffine and without CH?

Many people look for a life style reason for our condition. We were born with a fucked up hypothalamus, plain and simple.

Title: Re: Is caffeine contributing to my CH syndrome?
Post by kcopelin on Jun 1^st, 2006, 12:11pm

Bob, you have such an elegant command of the language ;;D "Fucked up hypothalamus" is the absolutely most concise phsyiological description of CH that there is. Good job.
I also have messed around with deleting and adding things to my diet and routine. It accomplished nothing, but it did keep my "wittle hands busy and out of twouble." I've noticed that the vast majority of us CHers are pretty smart, analytical and willing to experiment on ourselves.
My dos centavos, caffeine is good. In the form of Rock Star (energy drink, lots of caffeine and taurene that tastes way better than Red Bull) it chases away shadows totally. It also prevents me from getting relaxed, which is a trigger for me.
PFDAN to y'all,
kathy

Title: Re: Is caffeine contributing to my CH syndrome?
Post by aprilbee on Jun 1^st, 2006, 5:22pm

on 05/29/06 at 09:55:38, sailpappy wrote:

me too, not a bit of difference....maybe it just for works migraine sufferers???

Title: Re: Is caffeine contributing to my CH syndrome?
Post by BarbaraD on Jun 1^st, 2006, 6:57pm

Caffeine is the best thing I've found for aborting headaches at the very beginning. Cafergot for when they go from 0-10 without notice.

Relaxation is a trigger for me (and the barometer) so the caffeine keeps me rived up.

Hugs BD