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Topic: get worse? (Read 558 times) |
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genss
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My CH started years ago with one every other day. This year for the first time I get them every day. Is it likely that through the years it will get worse and even come several times a day? And has anyone went from episodic to chronic over the years? If so, is it rare or often. For those of you who get several a day and/or chronic, was it always several a day and/or chronic, or did it eventually get worse. I guess I want to prepare for the worst if I have to.
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thomas
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THey could get worse or better. You can go from chronic to episodic or episodic to chronic. The possiblilties are endless, it seems. 
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aprilbee
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Re: get worse?
« Reply #2 on: Mar 8th, 2004, 12:41pm » |
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still episodic after 17 years, but some cyucles are REALLY bad and others are, for lack of a better word tollerable, after I had my daughter, I went through like a double cycle, about 6 months, but since then I have pretty much stayed regular, anything different going on in your life right now?
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genss
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Re: get worse?
« Reply #3 on: Mar 8th, 2004, 12:58pm » |
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These are some things that MAY have triggered this episode:
I began taking the birth control pill just about the same time. (plus the last episode was when I began taking the pill as well.) Although my CH first began long before I ever took birth control.
I was eating a LOT of sweets and chocolate(leftover from christmas and also some from valentines day.)
I was around cigarette smoke for a prolonged period of time for the first time since my last bout.
Also, I had tried to adust my sleeping habits by going to bed an hour earlier. Even though I didn't get a headache that night my biological clock was already affected. I woke up an hour earlier that night and couldn't go back to sleep. The next day I woke up an hour earlier and again couldn't get back to sleep. On the third day I woke up around 4a with my first CH of this episode. Luckily I had imitrex from my last episode, so it got rid of the CH and I went back to sleep. Then the next day I woke up at 3a. and couldn't get back to sleep. The next day it was 2am. That weekend I tried to take naps but still couldn't sleep. After that the CH came on strong every day. I am on prednisone (for the second time this episode) now, and headaches are gone and so is sleep. Also, it may sound crazy but I swear whenever I take the prednisone for the 18 days, I feel like my teeth or jaw are changing shape or positions.
Anyway it could have been of these things.
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thomas
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Cluster headaches are "caused" by a deformed hypothalamus, period. They may be "triggerd" any number of things, including lifestyle choices, however it is my belief that if you're gonna have ch, you're gonna have ch, it doesn't matter what you do. The best thing you can do is build and arsenol to battle the beast. 
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TxBasslady
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Re: get worse?
« Reply #5 on: Mar 8th, 2004, 11:29pm » |
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I have to agree with Thomas..........
CH is NOT predictable......The beast comes and goes whenever he pleases.
I am episodic and currently pf for 181 days, thanks to a Prednisone taper. However, I NEVER leave home without my meds. I will be prepared should the beast decide to knock on my door.
Best to prepare for the worse......but enjoy all the pf time you can get.
Since I found this site and this board, I don't really worry about the things you mentioned. I know that if the CH returns, I am among family here. They will support me when I'm hurting.......and while I'm pf.....I will support them.
Sorry you're hurting........stay, and you will find the best support and the best folks in the World.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
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t_h_b
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primary chronic since 1999
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Re: get worse?
« Reply #6 on: Mar 9th, 2004, 4:52am » |
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on Mar 8th, 2004, 12:58pm, genss wrote:
Also, I had tried to adust my sleeping habits by going to bed an hour earlier. Even though I didn't get a headache that night my biological clock was already affected. I woke up an hour earlier that night and couldn't go back to sleep. The next day I woke up an hour earlier and again couldn't get back to sleep. On the third day I woke up around 4a with my first CH of this episode. Luckily I had imitrex from my last episode, so it got rid of the CH and I went back to sleep. Then the next day I woke up at 3a. and couldn't get back to sleep. The next day it was 2am. That weekend I tried to take naps but still couldn't sleep.
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Sounds like you might benefit from melatonin. Talk to your MD about it. Successful doses range from 0.5mg to 12mg. It has pretty much eliminated my headaches, although drinking alcohol can still trigger an attack.
It may be that nothing external to your skull caused this to happen. CH is sneaky and tricky. If you can't figure out a trigger, then let that go and concentrate on fighting it.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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Bob_Johnson
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Re: get worse?
« Reply #7 on: Mar 9th, 2004, 11:04am » |
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"I guess I want to prepare for the worst if I have to. "
Whoa! Don't think you can do this without making your life a misery of fearful expectation, of waiting and watching for the worst.
We CAN learn about the disorder, learn how to treat it, keep up with new developments (without becoming obsessive!) but--primarily--learning how to cope with the disruption when it hits and then returning to a normal life afterward. Fortunately, only a few folks have their lives controlled by clusters.
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Bob Johnson
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Wifeofchman
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Re: get worse?
« Reply #8 on: Mar 10th, 2004, 10:15pm » |
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I agree with everyone, that there is no set trigger or pattern for CH. My cycles start with shadows for days and no real attacks. Then I start getting "real attacks" during the day and then It settles into a night thing with an average of 3 to 4 attacks every night for god only knows how long. Typical meds that work one time might not work the next which makes it very frustrating. I always prepare for the worse and hope for the best. The Man.
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TTYL,
Carrie
Wife of CH Sufferer
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Giovanni
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Re: get worse?
« Reply #9 on: Mar 11th, 2004, 10:04am » |
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My cycle usually starts out one a day; then advances to two (12 hours apart), during the apex anywhere from 5-8 a day. Everybody's different and these things change over the years to perhaps different times of year, etc. Episodic can change to chronic; chronic to episodic.
T_H_B gave you a good suggestion on trying melatonin. Some of us has good luck with this along with some B-Complex vitamins. I have taken 9mg one hour before bedtime in the past with good results.
Good luck,
John
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