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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> caffeine-Am I eligible?
        
(Message started by: inyoureye on Apr 15^th, 2007, 8:34am)

Title: caffeine-Am I eligible?
Post by inyoureye on Apr 15^th, 2007, 8:34am

I am in a cycle now that (as long as I don't drink or puff weed) I get 2-4 hits/night, 40mins to an hour in duration.

My buddy works for pepsi and has brought me 2 cases of starbucks iced coffee (cans) and a case of 20 oz. mountain dew bottles. Should I be pounding these during the day as a prevent or do I start slamming them when I am awakened by the bitch (I know, you guys call it "the beast", but man it's "a bitch",lol)

My company screwed up my bennies last cluster and I am now in debt to the oxygen comp for $2400 so my o2 supply ain't happening. I do have 4mg trex shots that work great but can't afford to use them with every attack.

What to do, any advice?

Title: Re: caffeine-Am I eligible?
Post by darkwalker on Apr 15^th, 2007, 9:08am

I'm new here, and this is only my second episode but I'll put in my 2 cents for ya'.

I'd sip one of those right before bed, but don't down it all day. I've found that your body gets used to the caffeine if you drink it all day (unless the "bitch" is hittin' all day).

I usually wait until it wakes me, then I nail it with DEW/Red Bull.

Also, Excedrin Migraine has caffeine so sometimes I'll pop one of those too.

8)

Title: Re: caffeine-Am I eligible??
Post by inyoureye on Apr 15^th, 2007, 9:45am

Thanks DW.

When you hit it after it wakes you, does it lessen the pain or shorten the duration?

Title: Re: caffeine-Am I eligible?
Post by E-Double on Apr 15^th, 2007, 10:05am

Caffiene can be a bud however like anything else BE CAREFUL.

You can also wind up with withdrawl or rebound from caffiene.

Look into Welding O2 which can be a cheap, safe and helpful way for you to deal.

You can check http://www.med-owl.com/clusterheadaches/tiki-index.php?page=HomePage for many natural treatments.
This is an awesome "book" created by a CHer from here.

In addition look at the pinned thread about Tips for CHers which we have shared many strategies as well as info that will help with insurance and getting assistance from companies like Glaxo

Title: Re: caffeine-Am I eligible?
Post by darkwalker on Apr 15^th, 2007, 10:55am

The caffeine shortens it a LOT! I had a CH one night and I didn't have any DEW or Red Bull. My coffee was too weak and the CH lasted for 3 hours. Starbucks coffee works best.

Usually DEW or a Starbucks will kill it in about ten minutes or less. It's weird because the change is very sudden. I'll go from intense pain to nothing at all.

Title: Re: caffeine-Am I eligible?
Post by inyoureye on Apr 15^th, 2007, 11:34am

great to know, thanks guys, one more thing to try tonight. I'll let you know how it went tomorrow.

Thanks again folks.

Title: Re: caffeine-Am I eligible?
Post by Linda_Howell on Apr 15^th, 2007, 1:11pm

Quote:

I am now in debt to the oxygen comp for $2400

JEEZE :o :o :o I am very curious as to how much 02 did you go through last cycle?

Oh....and who was your supplier. If you used Apria or Lincare, 2 of the biggest nationwide, you'd have to be going through one hell of a lot of e-tanks to spend THAT kind of money.

Also, If you go to Lincare and want to do w/o the Insurance, they will make a cash arrangement with you that surely be less than what you're talking about.

Title: Re: caffeine-Am I eligible?
Post by inyoureye on Apr 15^th, 2007, 1:40pm

What happened is this. When I went on disability, UPS never sent the teamsters (who handle the coverage) the form saying I was on disability. Soooo,..they thought I was fired and cancelled my bennies. They realized their mistake when I pointed out that I had a $300 bill from Vanguard Medical supply.

The woman was very apologetic and promised she would fix it.

I never checked.

She didn't.
Sooooo,...they billed me for all the equipment ( 2 big tanks, 2 small tanks and 2 regulators. Masks, hoses,etc), o2 used (about $400 worth), and some nasty delinquency charges.

I can't get to the union till Monday to tear someones head off.

My bad for not making sure she resolved the issue though.

Title: Re: caffeine-Am I eligible?
Post by pieface_49 on Apr 15^th, 2007, 1:44pm

Hello Inyoureye and Darkwalker,

There is conflicting information concerning caffeine. If it works for you, that is great! I am not so sure that during cycles it is good for me? I often get hits between 10-11am during my cycles. This coincides with my morning coffee drinking, which starts at 8am. Coincidence or not, I wonder? There is such a headache called a "caffeine headache". I drink coffee daily and after the cycle is on the down cycle, I think the caffeine adds to duration and strength of the rebound headache. After my last cycle I continued drinking coffee as usual. It took over 2 weeks for the neck/shoulder pain to subside. It has taken close to 3 weeks for the rebound headache to leave. I am not sure it is gone now, over 3 weeks later.

Scroll down to "Recommendations and Treatments"
http://www.diagnose-me.com/cond/C145685.html

Close to the same info E-double posted.

Donnie

Title: Re: caffeine-Am I eligible?
Post by inyoureye on Apr 15^th, 2007, 1:48pm

yes, from previous reading, I am aware it can be hit or miss, even detrimental to some but I figure what do I have to lose. I'm out of meds till at least tomorrow night and I'm sure the bitch will pay a visit tonight so.....I'll give a starbucks Iced coffee a go.

I appreciate the concern wholeheartedly.

This place is great. ;;D

Title: Re: caffeine-Am I eligible?
Post by Linda_Howell on Apr 15^th, 2007, 2:17pm

Quote:

I can't get to the union till Monday to tear someones head off.

Rip something for me while you're at it, will ya? That kind of ineptitude frosts my balls. (don't say it Chuck)

Quote:

My bad for not making sure she resolved the issue though.

YUP. Do better next time. ;)

Title: Re: caffeine-Am I eligible?
Post by Gator on Apr 15^th, 2007, 10:52pm

Nothing works for everyone. If caffeine triggers you, obviously you shouldn't drink it.

From everything I've read here and experienced personally, caffeine seems to work best when taken at the early onset of a shadow or a hit. I really doubt drinking coffee at 10:00pm will have much effect on an attack that comes at 1:00 or 2:00am. It might keep you from getting into a good deep sleep where it is easier to wake up when an attack comes on, but then your sleep suffers and we need all the sleep we can get to deal with the attacks.

All the insomnia treatment tips say that drinking caffeine before bedtime will affect your sleep even if you think it doesn't. It might be best not to drink caffeinated beverages just before bedtime. Unless you're drinking it to kill a shadow/hit, that is in progress. Then, you gotta do what you gotta do to kill the hit.

This is another area where oxygen shines. It doesn't keep you awake after you're done with it. If there is no medical reason why you can't use 100% oxygen, you really should try it. If you did, but didn't try it at 15lpm via a non-rebreather mask (and a clustermasx is even better) then try it again.

Just my dos centavos.

Title: Re: caffeine-Am I eligible?
Post by TxBasslady on Apr 16^th, 2007, 12:33am

Too much caffeine, like what's in Mountain Dew, may not be good for some folks.

Not sure a steady diet of such drinks is worthwhile.

I've known several who suffered heart attack like symptoms from the excess caffeine. I didn't say they had a heart attack, but they damn sure suffered the symptoms.

Just be cautious....just as in any meds you take.

Jean

Title: Re: caffeine-Am I eligible? (report back)
Post by inyoureye on Apr 19^th, 2007, 5:46pm

Well, I tried what worked for darkwalker and here are my findings.

7 daytime hits-- I would wait till it hits k3 or so and then slam a starbucks, 11oz iced coffee (cans) Worked for 5 of the hits, completely aborted. The ones it didn't, required a trex shot, they hit k7 in no time and by k8, the shot was administered. all better.

9 nighttime hits- same remedy, aborted 5.

BUT

I had no problem passing back out as the shadows and minor pains dwindled but the dreams,...oh man. I had some of the most upsetting dreams I've had in a while.
so, .......for me.....

I will continue to try the caffeine slam when the shadows creep but won't rely on it as an end all. I will continue to use it as an abortive at night for now also because those dreams were only on 1 night. I did this last night, it worked, and I didn't have bad dreams. This is now another tool in my bag regarding work also. I cannot carry an oxy tank on my UPS truck, against D.O.T. rules, so having a can of starbucks in my day bag, can't hurt.

Again, only my findings and I'm not making any statement here, take from this what you will.

And a big thank you to DarkWalker ;)

Title: Re: caffeine-Am I eligible?
Post by Guiseppi on Apr 19^th, 2007, 6:03pm

I'm not one the caffeine or energy drinks worked for. I do remember several of the people posting it was important to find the energy or caffeinated drinks that also contained Taurine, as this was an important part of why it worked to abort. Any of you red bullers/ monster drinkers up on this?

Guiseppi

Title: Re: caffeine-Am I eligible? (report back)
Post by TonyG1 on Apr 19^th, 2007, 7:38pm

on 04/19/07 at 17:46:00, inyoureye wrote:

I had no problem passing back out as the shadows and minor pains dwindled but the dreams,...oh man. I had some of the most upsetting dreams I've had in a while.
so, .......for me.....

For nighttime hits, caffeine is ok IF and ONLY IF you catch it in time... as you all know, everything is timing with this thing....

Dreams.... when I'm in cycle I dream so of the wildest stuff ... and remember them; whereas, when I'm out of cycle generally don't remember what I dream. I'm pretty much strictly a night hit person... 99.9999% of the time.

Title: Re: caffeine-Am I eligible?
Post by inyoureye on Apr 19^th, 2007, 10:23pm

Guisseppi- My buddy works for pepsi and when I told him of the success, he brought me a 6 pack of No fear gold. 16 oz, 200 mg caff. also has Tuarine, creatine, blah blah blah

Didn't work. I don't know if anything would have, that may have been one that wasn't stoppable. No where near enough to consider conclusive, again, just my findings.

Tony- The remembering part was dead on but that's not a good thing. The dream I was in before I woke was of someone torturing my MOM!!

She's one of those "amazing" moms,....a saint. Not stuff I wanted to remember so vividly,....oh man

Title: Re: caffeine-Am I eligible?
Post by sandie99 on Apr 20^th, 2007, 11:30am

As it has been said, nothing works for everyone.

I'm one of those, who use energy drinks with caffeine and taurine and swear by it.

I have noticed that IN MY CASE it does not help if:
the drink is not ice cold (and I have ice cubes etc with it)
if I do not drink it as soon as I feel the first signs of the hit

I have tried Jolt Cola, which has just caffeine. Sure, it tasted better than energy drinks, but it did nothing to my ch.

PF days to us all,
Sanna

Title: Re: caffeine-Am I eligible?
Post by JeffB on Apr 20^th, 2007, 12:06pm

Red Bull?

Title: Re: caffeine-Am I eligible?
Post by inyoureye on Apr 22^nd, 2007, 5:44pm

2 more aborted. I have found that the "no fear gold" doesn't cut it but hard coffee, ice cold is doing the trick.

Good luck all.

Title: Re: caffeine-Am I eligible?
Post by GrandPotentate on Apr 30^th, 2007, 9:15pm

I'm not sure if caffiene aborts for me or postpones. It can help me though a day at work, but it seems that I get hit all the harder at night when the caffiene winds down - call it a rebound. But at night, I can take a walk and get some O2. My boss is fortunate that I only get sick on my own time. (_!_)