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        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> My 2 cent approach
        
(Message started by: gobby on Dec 15^th, 2005, 12:51am)

Title: My 2 cent approach
Post by gobby on Dec 15^th, 2005, 12:51am

I've been kinda' worried about posting this because as we all know, everyone has his/her own personal treatment for these damn things. My first cycle 4 years ago was brutal!! 2 trips to the ER, shots, pills and everything else under the sun. I made it through with a lot of trex and a prayre or two. That was before I knew alchohol was a trigger, or anything was a trigger for that matter. Well this is my third trip around the dance floor and I've come up with a few things that seem to work for me. First of all, NO ALCHOHOL!!!, this seems to be the most important one for me. I don't think that is truley just a trigger with me, but also an amplifier. I still get 3-7 hits a day, but 85% of them are in the 1-3 range (very managable) Secondly, I pack in the caffine.........all day long, from the moment I get up to the time I go to bed in the form of Coke or Pepsi,not slugging it, but slow and steady sipping unless I feel a shaddow then a few good slugs. I don't seem to get "wired" like I would when not in cycle, maybe it counter acts the fact that I'm not getting a lot of sleep, since the ch's I get at night still wake me up every 2 hrs. Then when I feel that a real hit is comming, I "slam" a red bull and 2 regular aspirin. Now add in 2000mg of Kudzu every 6 hrs and 9mg of Melatonin before I hit the sack (both recent additions) on the kip scale my life seems to be about a 3.
Since Nov 9th I've had 117 headaches (yes, I keep a log) and only 2 have been 8's. And with the addition of the Kudzu I've dropped from 7 a day to 3. So I may have just gotten' lucky and had an easy cycle, or maybe something I'm doing is working. But this was just my 2 cents.........hope it helps someone. (And yes, you read it correctly, so far no prescription meds or imitrex injections) :)

Title: Re: My 2 cent approach
Post by jon019 on Dec 15^th, 2005, 1:19am

Hi Gobby,

OK, my 2 1/2 cent worth. I swear by caffeine, BUT at the right time and the right amount. Too much, wrong time, and the effect is just the opposite (rebound or tolerance or dependence, I don't know). Just consider cutting down on the constant and using at onset-see what happens.

Regards

Jon

Title: Re: My 2 cent approach
Post by gobby on Dec 15^th, 2005, 1:29am

hey Jon

Thank's for the advise, but I have played with that idea. It seemed that an hour or so without the caffine, the shaddows would set in. Maybe I worded it it wrong, but I tend to "sip" cokes all day, so one can lasts an hour and a half or two hours. I don't want to put too much in my system because then the shock of the red bull wouldn't be as strong, but just enough to do whatever it does to thwart these things. It's a real balancing act. And I know that when this cycle finally comes to an end, I'll have to slowly ween myself off this stuff for fear of the rebound.

Title: Re: My 2 cent approach
Post by zwibbs/Scott on Dec 15^th, 2005, 1:45am

Hi Gobby---Thanks for the information. I appear to be ending my cycle, which started in mid-october. I am 51 years old and began the horror when I was 23. Believe it or not I was at an afternoon Yankee game when my first ever episode started. I became frantic because I didn't know what was happening.28 years later they come back to haunt me every 2 years......The reason I state this is because every cycle brought me new surprises. What worked in one cycle didn't necessarily work in the next cycle. In my 30's ( I remember those days) the cycles were positively the worst.Around that time Imitrex was introduced, and I injected myself with a vicious attack. It was enough for me to get to sleep, but 1 hour later it was back.Alcohol never bothered me, BUT this present cycle it was a killer. 10 minutes after my first gulp and BAM I had a top of the scale attack. Through the years I found a cup of coffee, then ice cold water helped......Also I would take a slightly dampened towel, roll it up , then lean my head on it ----obove my left eye.I would have to be standing upright--so a dresser or something high would be the piece of furniture that I would use.............I don't know hoe old you are but as you get older the cycles, while still bad, lessen abit. Hang in there and continue searching for pain-free perios during your cycle.

Title: Re: My 2 cent approach
Post by cardogman on Dec 17^th, 2005, 11:15pm

Went to this well known headache Doctor in NYC the other day and said absolutely no caffeine. Although caffeine works as a pain killer of sorts headache is aggravated by it especially CH. He said I will initially withdraw and CH may get worse but eventually it will help. He also said Decaf is fine and ween off slowly over a few days from regular. Go half and half and then drop caffeinated.

Title: Re: My 2 cent approach
Post by Demeter on Dec 21^st, 2005, 6:53am

Sipping hot stronger coffee works for me, you would have serious issues if you tried taking either the cigarette or the coffee out of my hands during the worst of it ;;D

Title: Re: My 2 cent approach
Post by cardogman on Dec 21^st, 2005, 10:19am

I wouldn't have serious issues if you decided to smoke and drink coffee until the cows came home. If you did you would be doing the same thing I do. I smake and drink coffee. The Doctor told me that I should stop smoking and stop the caffeine. I do agree with other person regarding whento caffeine your self and when not. There are times that I will drink the coffee and the headache goes away and others it gets worse. What I have done is I now go hal decaf nd half regulare and have dropped the consumption. The cigarretes that's real hard to quit. I had an episode yeasterday and the headache spntaneously went away in 45 minutes. What I still don't get is this feeling above my eye, arounf =d the tremple and up on my scalp. a combination of feeling that I banged my head on something and burning but with out a true headache. hat is reall bizarre and doesn't seem to go away any thoughts?

Title: Re: My 2 cent approach
Post by seasonalboomer on Dec 21^st, 2005, 10:57am

throw a little O2 into that mix and you may be able to ramp your "lifestyle" scale up another few notches also. if you're not using it, it is truly worth a go to add to the arsenal of non-pharma solutions. also if you're not using it you are ignoring what might be many people here's best weapon.

scott

Title: Re: My 2 cent approach
Post by jon019 on Dec 21^st, 2005, 12:07pm

Hi gobby,

What Scott said.

Also, your comment that "it is a real balancing act" is absolutely true and applies to way more than just caffeine. Over the years I have had to learn what, when, how, how much, when to, when not to, why, why not, why me, WTF...for almost every aspect of my life
from sleep to travel to diet to physical activity ad nauseum. One of cruelties of the beast.

Used to control me and I was resentful that this condition was making me do this. Until I figured, hey wait a minute, this is MY method to control IT. Subtle difference maybe, and difficult to explain. Mind over mind? See it explained way better by others here. You've gotta follow lots of threads. Great and good stuff
is to be found sometimes hidden away under unlikely topics.

One example that risks really annoying some but has greatly benefited me. When I am getting hit at night(once an hour, 6-7 times a night) I don't get pissed, I don't get aggitated, I TRY not to fully wake up, I slap on the O2 mask, send the beast away and think to myself-now I get another hour of sleep. Not I ONLY get another hour, but I GET another hour. Again, a subtle thing, but turning a negative into a positive. Doesn't always work, and God forbid I am away from my O2 (like my last camping trip) but it can make a big difference in life.

One other comment to cardogman (if he had the patience to wade through the above). Decaff coffee was as much a trigger for me (in cycle) as regular. Same goes for de alcoholized wine. There are all kinds of ingredients in both, it's not just the caffeine and alcohol that can cause problems.

Regards,

Jon