I've lurked here for awhile and read a lot of posts. I finally broke down and went to see a doc, after I was one stop sign away from the ER.  (the beast lifted) My doc looked at me like i was nuts when i told him how  much coffee i drank, which was not that much; compared to the rest of the public.  Anyway, he put me on 25mg of topomax, bumped it to 50mg after a week and 2 more beasts.  told me to quit caffeine and alcohol.  i quit caffeine, slowed the beer and have never felt better.  Thing is.... i dont know if it is the "no caffeine" OR the "topomax" cause I started both at same time.  Been a cool non humid summer too.  Been about two months... and really have felt shadows almost daily, but no beast!!!  To my point and question though... What is it with the caffeine and energy drinks ?  could we actually be hurting ourselves with this?  Is it fuel on the fire ?  I was(am) a one attack eposodic person, usually late evening, or right when my head hits the pillow. BAM  Was/ is my body craving caffeine?
Really, i think my nerves were shot the last 6 years, i have never felt better.... just wish i knew which it was, no caffeine,  topomax, or both.
PFD for all.  good luck. god bless

Rather than the no caffeine I believe it was the no beer that made the difference along with the topomax.  Alchohol is a known trigger among episodics.  Many of us use caffeine as an abortive.  Light attacks and shadowsI can often abort with a couple of cups of strong coffee.  Those that I don't abort are at least lessened in intensity.  

Energy drinks don't contain all that much caffeine, usually about the same as one cup of coffee.  It is the Taurene in conjunction with the caffeine that seems to make the difference.  

Unfortunately, I can't tell you why any of this is true.  There are others on the board who can explain all of this.  I just have learned through experience wht works for me and what doesn't.  You will have to learn through your own experience wht is most effective for you.  We can advise, but none of us respond the same to any of the treatments.  Also, keep your options open as the beast morphs regularly and what works today may not during your next cycle, and vice versa.

Jerry

I guess what i should ask .. What is the science behind drinking caffeine to help with an attack, or abort an attack ?   I carry No doz in my pocket in case of emergency... cause we all know we will try anything.  Has anyone quit caffeine with any success?  Not trying to be a smart ace, just wanted to provide insight that maybe it could be possible ( I DUNNO), that caffeine might not be that good.  ???????
Just food for thought.   I am a cigar smoker also.

Caffeine acts as a vaso-constrictor (constricts your blood vessels), and it may even increase blood pressure.  This is why caffeine affects CH the way it does.   8-)

I also feel caffeine is a big trigger for CH. I was getting the attacks for last 4 weeks but 3 days back i quit Tea and i am completely pain free except some light shadows sometime. Let's see how long it goes. If it works out ,i will not touch caffeine for my whole life.
I am very happy  :D. Wish you all pain free day

Be really careful trying to establish cause and effect with the beast. I have ended cycles by not using q-tips on the affected sides ear......by giving up coffee.....only to discover the cycle had ended by itself.  The beast morphs so often, it can be really difficult to firmly establish what actually starts, ends, extends a cycle.

It's a good idea to keep a diary as they are useful for identifying triggers. I agree with Calico, alcohol is an almost universal trigger for most while on cycle. Off cycle I'm a social drinker and have no CH issues, on cycle I can't touch it without a hit.

On the other hand, any time a life style change appears to have a positive effect on yoiur CH, run with it!!

Joe

Agree with Callico and Joe on the beer.

Caffiene works as a stimulant increasing your heart rate and BP. Most stimulants help CH to some degree for many due to a rapid change in heart rate.

Only way to find out if its the topo, coffee, or Beer is to test each one individually. I think you have to ween off the Topomax if you try going without. Not sure, Ask your doc.

For migraines, it is pretty clear that caffeine is a two-edged sword. It helps in the short run, but in the long run, higher caffeine intakes contribute to the headaches.  Not much research on caffeine and clusters, but I suspect there is a similar pattern.


Quote:

Curr Pain Headache Rep. 2009 Aug;13(4):301-7.Links    Overuse of acute migraine medications and migraine chronification.    Bigal ME, Lipton RB.    Merck Research Laboratories, Whitehouse Station, NJ 08889, USA. marcelo_bigal@merck.com    Among individuals with episodic migraine, the influence of excessive acute medication use on the development of chronic migraine depends upon within-person characteristics (eg, headache frequency), class of drug, and frequency of medication use. Available data suggest that opioids induce migraine chronification (progression), and the effect is dose dependent (critical dose around 8 days of exposure per month) and more pronounced in men. Barbiturates also induce migraine progression, and the effect is dose dependent (critical dose around 5 days of exposure per month) and more pronounced in women. Triptans induce migraine progression only in those with high migraine frequency at baseline (10-14 days per month), but not overall. NSAIDs protect against migraine progression unless individuals have 10 or more headache days per month (when they become inducers, rather than protective). Finally, caffeine-containing over-the-counter products increase risk of progression. While we await randomized trials, these findings should inform the choice of acute migraine treatments with the goal of reducing the risk of migraine progression to chronic migraine.

I never had a problem with caffeine....just the reverse. No one drinks stronger coffee than I do. I add a little espresso to my Folgers.

When I was getting hit, I felt that caffeine did some good. I have no proof of course. Alcohol was never a trigger for me but I drink only on religious holidays.......when the family gets together.  8-)

Charlie

i was in a cycle a few years ago and found coffee to be a good preventative. a few cups before i went to work and a cup or 2 at work would suppress them and would help abort attacks if i cought them early enough. after a while i was drinking 2 gallons a night and getting hit frequent and hard. so i quit the coffee and the ibuprofen cold turkey. that seemed to shock my system and the cycle ended.

ok, im starting to get my CH's back i think. so im going to try the energy thing once. one weird thing is that when i touch my head it feels all tingly. weird stuff right. was wondering if any of you went through this. also the upper part of my back has a knot in it right in the upper middle part.  had the wife masage it but still there and neck still hurts!!!  my cycle was from june 24th until august 2nd. and now since friday its been like this. im totally sick of it and want it to stop NOW!!! its about a 5 outta 10 right now, i slept earlier for a while because im just so exhausted. i have no imitrex, all i got is this crappy migranel stuff that dont work! any info would be greatly appreciated. im sitting by the window right now with a nice breeze comming through which gives me the chills and makes me feel so much better. i dont know how but it works. and a fan on high at night is always a plus.

Ryan - Have you tried melatonin at night? Go down to Walgreens and pick up a bottle of the 3mg tabs. I'd start with 2 tabs (6mg) about half an hour before bed. It has eliminated all nighttime hits for me, and they used to be the worst.

When I'm in cycle I take 9mg before bed, but others around here take more. You'll find it with the dietary supplements and vitamins and such.

Well for what its worth....I never ever drink Cafeine.

BUT...I broke down this time, and tried it, because of the alllllll day H.A.  It works for me..the energy drinks make me pf all day.! 
   Just hope I don't get too used to it. :o

Since I am not used to Cafeine,,,,Boy can I work fast!

just my two cents.......    lorac

MORPH...is the right word !  Nothing is set in stone with this bad beast eh!

never heard of it, maybe ill pick some up tomorrow, but the NOS drink is taking away some of my neck, back and head pain. i just dont want them to fully start back up again  >:(

is it ok to take with my lithium and verapmil?????????

Hallo friends! I suffer 22 years episodically (1 month every 1 year). I had first attacks at the age of 25, when I was student of medicine (now I am ICU doctor). For many years my only drug was just coffee (1 double espresso or 1 double greek coffee at the beginning of pain). It is very effective for daytime attacks, less useful for the night (during the night the pain wakes me up when it reaches the peak level, so it's too late). 8 years ago I tried 100% Oxygen which was very effective. Now I use coffee for daytime attacks and oxygen for the night. I can't find medical bibliography about coffee and CH. My personal experience is: drink coffee only during attacks

ryan_wi wrote on Aug 16^th, 2009 at 11:21pm:

is it ok to take with my lithium and verapmil?????????

Melatonin is fine with lithium and verapamil. But you should limit your intake of taurine (one of the ingredients in most energy drinks) while taking verapamil. Studies have shown taking too much of both can mess with heart rhythms. How much is too much? I'm not sure - you'd want to talk to your doc about that one.

I used to be on 480mg of verapamil daily and would average 1000mg of taurine per day and never had a problem, but like I said, talk to your doc.

Guiseppi wrote on Aug 14^th, 2009 at 8:27am:

Be really careful trying to establish cause and effect with the beast. I have ended cycles by not using q-tips on the affected sides ear......by giving up coffee.....only to discover the cycle had ended by itself.  The beast morphs so often, it can be really difficult to firmly establish what actually starts, ends, extends a cycle. It's a good idea to keep a diary as they are useful for identifying triggers. Joe

This is so very true. I have some personal beliefs about this when it comes to some labeled food triggers. I've had CH since age 11. I'm episodic, and when I got grown i've kept a journal log of my headaches for certain cycles ....not all of them of course. But I've noticed that sometimes I deducted that a certain food was a trigger for cluster because it came right after I ate that food. When actually I was gonna get hit regardless.
Reminds me of the many times I could be doing NOTHING, and a hit comes out of NOWHERE.

All my life I have always had a very low tolerance to caffeine.  My limit is two cups of plain old regular coffee in the morning, then not another drop until the next morning or I have the heebie-jeebies all night long.

But, when IN cycle, I keep a fridge full of Red Bull, or a similar energy drink with both caffeine and taurine in it to help abort hits, but usually take it to abort the shadows (I rely on my O2 for immediate aborting of a hit).  Interestingly enough, when in cycle, the extra caffeine I drink does not give me the shakes????

Interesting question - I wonder why?

Sandy

I'm starting to believe caffeine is the trigger for mine.  It's been everyday for a week now and it's always after I've had my first morning cuppa.  But this is all new to me too.

Coffee has always been a help to me when I'm in cycle. 

After the morning cup or three, I'll often have an energy drink in the afternoon.  It helps to keep me functional and shadow-free during the day, leaving me to face something nasty during the hours of midnight to six AM...and let's face it--if it's going to happen, it's better that I don't deal with civilization at the same time.    :-?

Melatonin (taken an hour before bedtime) has been effective at stopping most of the late-night attacks--less so during mid-cycle.

O2 to abort these hits, of course.  Sometimes several times, if I get multiple hits. 

For some reason, I've had to increase my usual 9 mg of melatonin to 15 mg during this current cycle, in order to achieve some less-than-perfect results. 

I've also continued taking my usual 500 mg magnesium, vitamin B2, B6, and a calcium supplement with vitamin D.  Not sure what this has accomplished--although the cycle I expected in May of this year didn't begin until August.  That, of course, could be due to any number of things, including the fact that I seem to be getting older.   ;)

What's been said previously about alcohol and episodics is true of me as well.  After a cycle begins, I'd rather hit my big toe with a three-pound hammer than drink a beer.  Negative reinforcement, you know...stuff doesn't even look good to me anymore during a cycle.   :P

After years of futile grasping for the magic bullet, I've settled for going with what I know will help me get through the blasted thing with a. the fewest hits, b. the mildest hits, and c. the least harm.  I can't kill it, but I can at least make it endurable.   

YMMV.

Sorry for the long, rambling post, BTW.

Best wishes,

George

Alcohol bad, caffeine good. You really got to watch them schnitzen grubbens too. :D
Caffeine has aborted many headaches for me. You have to stay away from too much caffeine as well, get over 2000mgs a day and it will become a trigger.
the bb

wrote on Sep 6^th, 2009 at 10:38am:

Alcohol bad, caffeine good. You really got to watch them schnitzen grubbens too. :D

Fifteen is my limit on schnitzengruben.