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Topic: veteran CH guy -- new to this site (Read 333 times) |
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lylestevens
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veteran CH guy -- new to this site
« on: Feb 12th, 2004, 10:20am » |
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I recently did a big internet search of CH sites -- motivated by the worst patch of CH I've had for several years. Didn't find much information out there that's new since the last time I talked to my neurologist, but I did find this site and after reading around in it for a couple of days I'm pretty impressed.
I'm 44 and started getting CH shortly after my 30th birthday. I'm episodic, not chronic, and what has always set off episodes has been the change of seasons -- the onset of really cold, dry weather in my part of the country (Iowa). I guess I've had a dozen episodes over the last 14 years (typical duration four to eight weeks) and all but two of those episodes have started in December or late November (the two exceptions were episodes that started when the dry weather turned back moist again in the spring -- I gather from what I read here that that kind of occasional unpredictability is a very typical experience for CHers). During an episode I'll average 4 or 5 headaches a week and typically early afternoon (noon to 2 pm or so) has been my most common time to get them. I'm lucky in that getting a CH more than once in a day has been a very very rare experience for me.
My episodes were worst in my early to mid thirties and have not been as frequent or prolonged in recent years. And my headaches have been much more manageable than most sufferers' because fairly early on I stumbled onto a remedy that works for me. At the first telltale signs of CH I slam down a bottle of Coke -- anywhere from 16 to 24 ounces. Don't ask me why it works -- it just does. (I know the literature indicates dilation of blood vessels is a CH trigger and caffeine constricts blood vessels.) Caffeinated drinks alone (like Diet Coke or cold coffee) don't work, sugary non-caffeinated drinks (like Sprite) don't work, but something about the caffeine-suger combination in Coke works (I've never tried stuff like Mountain Dew or Jolt, but it's possible that if it is a caffeine-suger combo that's doing it that they might work). And drinking it down fast enough (less than ten minutes) to provide a shock to my system is essential (instead of nursing the drink).
Now some of you who regularly consume several cups of coffee a day, or other caffeinated drinks, will find it laughable that one 20 ounce Coke would provide a big "jolt" to my system, but it does for me because normally I consume no, or virtually no, caffeine in my day to day life. And believe me since I discovered that this works for me I cut off virtually all caffeine from my diet during the times between episodes just to preserve the possibility for this "jolt" effect during the CH times when I need it. Once, I let myself get in the habit of drinking Coke during a normal time and when the next CH episode came I really paid for it -- it took a good 40 ounces just to get the effect I used to get with 16 to 20.
Anyway, what prompted me to do the updated CH research and to post this message now is that in this episode the patterns have changed -- suddenly instead of getting CH in the middle of the day I'm having the more typical CH experience of waking up with them a couple hours after I go to sleep at night (I know from reading this message board lot of you know what this is like) and since the pain is more advanced in these night incidents when I wake up it's proving much harder to shake them. I'm having to experience 30 to 60 minutes of typical CH torture even with my Coke remedy instead of being able to avert them almost altogether like I usually can when I can recognize the signs earlier in the CH and get on it right away.
I'm not looking for an outpouring of sympathy because I know many of you have it a lot worse than I do. But the act of writing this feels like good therapy. And if the cola remedy I stumbled onto years ago helps any of you, more the better.
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eyhavhedaches
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Re: veteran CH guy -- new to this site
« Reply #1 on: Feb 12th, 2004, 10:34am » |
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I know what you are going through, waking up with a ch is normally 10 times worse than being awake and getting a ch. First off when you awake with them they are normally already into full swing, these are my worst ones! I am not sure what to offer to you for advice, however I find that when I awake with a ch I often have to use Imitrex Injection to abort a full strength ch. I am new to this board as well, so we can learn together. I hope someone can anserw your question and I hope pain free days come your way soon!
ADAM
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TxBasslady
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Re: veteran CH guy -- new to this site
« Reply #2 on: Feb 12th, 2004, 10:46am » |
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Welcome to the board, lyles
Wow......we just had a fantastic Meet & Greet in Davenport, Iowa, in January.
Too bad you were not already here. It was a great meeting. We have 2 or 3 sufferers here on the board that live in your home State.
The night attacks seem to be the worse to manage. My hits were always around 2:30 - 3:00 a.m. Mine were already at a kip 7 or 8 by the time I could get to the meds. For alot of us here, really hot coffee seems to soothe the pain of the CH if we drink it during the headache. Bad thing is that we are all so different. Nothing seems to work the same for all of us. Anything that you find that helps to manage the pain is great.
You didn't mention if you do or have taken any type of meds for the ha's. 02 works wonders for alot of folks here. Also, melatonin has been found to work for the ha's for some here. Dramamine taken at night for some will keep them out of the REM phase. I slept on the sofa for almost 4 weeks...propped on pillows. Not lying flat seemed to help me. I had a fear of lying flat in the bed. I also think by being in a reclined position, I didn't enter the REM phase of sleep. Just my opinion.
Hope you enjoy your stay here. Lots of great folks and the best support you'll ever find.
Stay with us....keep posting, and let us know how you are doing.
Sending you lots of PF vibes,
Jean
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lylestevens
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Re: veteran CH guy -- new to this site
« Reply #3 on: Feb 12th, 2004, 12:05pm » |
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No, I've never taken any medications (other than my Coca Cola remedy) for CH other than in the very early days when I took OTC sinus headache medications (they didn't do anything). My neurologist has made a couple suggestions over the years but my CH would have to get a lot worse, and my home remedy of cola would have to stop working before I would even consider getting a prescription for anything. I just don't want to start down that road -- having to take something (or multiple somethings) just to feel normal. I have that luxury because my CH problem appears to not be as bad as most others' who post on this site.
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Callico
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Re: veteran CH guy -- new to this site
« Reply #4 on: Feb 12th, 2004, 11:41pm » |
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Welcome aboard Lyle,
Glad you found this site, but sorry it is getting worse for you. I would second Jean's suggestions of O2. It is inexpensive, is not a drug, has no side effects, and when you are through with the HAs you just turn it back in and you are done with it till the next time around.
I know what you mean about the Coke. It used to work for me till I got diabetes.  Diet Coke or Diet anything else does nothing for me at all. Sorry you didn't find us befor the get together in Davenport. Stick around though, we're gonna do it again.
Jerry
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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