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Topic: Periodic to Chronic ? (Read 325 times) |
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Egham
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Periodic to Chronic ?
« on: Mar 30th, 2005, 5:12am » |
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Hi everyone,
This is my first post to the message board, so please excuse the boring preamble!
I've been having CH for just over 30 years (since I was 12). In the early days they didn't really conform to the pattern of being at one time of year only, but in the last few years I've been getting them for a period of up to about 6 weeks somewhere between the middle of Nov and middle of Feb. During the cycle they come nearly every night, but then at the end of the cycle they normally stop pretty abruptly and I have the wonderful feeling of knowing I'm going to be clear at least until the next November!
This time things are a bit different. The first one was on Jan 31st, then after the attack on 8th Mar I had nothing (thought I was clear) until 17th Mar, and I've had 6 since then.
The odd thing is, I've always had a 'normal' headache in between the CHs during a cycle if you see what I mean! Well, I've had the normal headache constantly since 31st Jan and still have it now.
What I like to know is, could this possibly be periodic changing to chronic? I've seen references from people here saying things like "when I became chronic" but is that very common?
I should say, this time the CHs have been very short (no more than 1.5 hours usually) and especially so since this is the first year I've tried Imigran tablets. I think they're fantastic! The first medication in 30 years that's really effective.
Apologies again for the long first message. I'll keep them short in future!
Ian
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| « Last Edit: Mar 30th, 2005, 7:08am by Egham » |
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Gator
CH.com Alumnus
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Re: Periodic to Chronic ?
« Reply #1 on: Mar 30th, 2005, 9:50am » |
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Ian, welcome to the board. Sounds like you have a full bag there. I started out Chronic, so I don't personally know about the feelings as the CH mutates. I do know that at first I had near constant "Shadows" in between the 8 hits per day. It was a Prednisone taper that broke the shadows and brought me down to 5 hits per day.
Depending on the literature you read, you will find that approximately 10% to 20% of CH sufferers are chronic. It is much more common for an Episodic to turn Chronic than the other way around, though that does happen. I'm not sure on the percentage of Primary Chronics.
There is lots of information available in the links to the left as well as in the various message boards.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.brightok.net/~mnjday/chtherapy.pdf
Also, in the Medications Board, there is a thread called "5HT activity in Kudzu"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1107368408
This is a discussion on the use of a natural plant extract that seems to be giving many people great relief. It is quite long, but read the entire thread as there is information and updates all throughout the thread.
You might also check out www.clusterbusters.com. This is a website concerning the use of the psilocybin mushroom in the treatment of CH. This is another treatment that has a very high success rate.
Check out http://www.clusterheadaches.org.uk. This is an excellent website which has information about resources closer to home for you. They also have a hotline you can call to get help and information.
Again, welcome to our little corner of the web.
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Egham
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Posts: 3
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Re: Periodic to Chronic ?
« Reply #2 on: Mar 30th, 2005, 3:00pm » |
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Hi,
Many thanks for the reply. I'm still getting to grips with the terminology used on the board (e.g. I meant episodic when I said periodic) but can I ask something. I often have a dull pain (on the CH side) accompanied by a slightly sick feeling which I know will either turn into a full CH or just fade away. Is this what you all refer to as the 'shadows'?
The more I read of other people's experiences the more I think I'm lucky with what I have to put up with. I just don't know how you could cope with 5 per day let alone 8. I'm absolutely sure I would have "fallen" over a very high cliff by now!
Thanks for all the links and info. It's much appreciated. I'll take a look at it all in detail tomorrow.
Ian
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Gator
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Re: Periodic to Chronic ?
« Reply #3 on: Mar 30th, 2005, 11:09pm » |
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We kind of have our own terminology for the various aspects of these monsters. Helps us all to be on the same page. You'll catch on and if there's anything you're not sure about, please ask anyone here.
Shadows are a kind of low grade pain or pressure on the ch side. Sometimes they come just before an attack and sometimes they hang on after one. Sometimes they just show up and annoy you for a while and make you think you're fixing to get hit, but never fully mature.
As far as "falling" over a high cliff, I've been there - figuratively - standing on the edge more than once. IT's real easy to convinve yourself a .44 Magnum inter-cranial injection will solve all your problems. This website is a life saver for me and the people here are my family. For information and support, it doesn't get any better than this.
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Egham
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Re: Periodic to Chronic ?
« Reply #4 on: Mar 31st, 2005, 5:52am » |
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Thanks for that.
Sounds like I was on the right lines with the interpretation of the 'shadows'. It's so difficult to describe to non-CH sufferers though isn't it. My wife and I have a numerical scale to describe the severity so she can say to me "what's level's it at?" and I can say "up to an 8 now" .... as I bang my head against something.....not her! It's similar to your K scale.
You're right about this website. It's excellent. There's a strange and perverse comfort from knowing that a lot of other people are going through the same excruciating pain as I am. I hope that doesn't sound wrong. I don't wish this sort of pain on anybody....I'm sure you know what I mean!
Anyway, I'm off to get a repeat prescription of the Imigran tablets now.......
Thanks for all your help.
Ian
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jokrs2
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Eventually He will make us pain free!
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Re: Periodic to Chronic ?
« Reply #5 on: Apr 1st, 2005, 12:44am » |
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Welcome aboard, Ian.
Ditto what Gator said. You can't find wisdom like that in a doctors office. Of course, they don't usually have Gators in there either, as he would chase them around their office until they get it right and help us all out. 
Regards, Joe
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kimmeesue
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Re: Periodic to Chronic ?
« Reply #6 on: Apr 1st, 2005, 12:58pm » |
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Hi Ian, I'm new here, too and it is wonderful to find people who just "know". Even my doctor sometimes gets this glazed look in his eyes and I know he doesn't "get it". Even though everyone here has somewhat diferent experiences (it's amazing how the monster can morph) it all boils down to the same thing. And this is a lifeline that won't break.
Welcome
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If I wasn't doing this I'd probably be doing something else.
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