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Topic: CH with CPH !??? (Read 445 times) |
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MarkV
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CH with CPH !???
« on: Mar 7th, 2004, 5:35pm » |
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I just saw a post from Toader and Renee that mentions they have CPH symptoms in addition to CHs. Outside of myself, this is the first time I've heard someone post this.
I have CPH symptoms (that are actually more like SUNCT traits even, to some degree if you want to really get picky). When I get breakthroughs of meds or bad cycles, I start getting <20 second stabs, 30 to 60 a day. As the cycle gets worse, the stabs spread out, and they intensify to the point I start full blown cluster headaches. At that point they are intense (kip 9-10 level).
Is there anyone out there that has been diagnosed by a neuro with both or been told they have symptoms of both?
Thanks!
MarkV
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don't have a cow
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Renee
CH.com Alumnus
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May we all find some pf time! Is it summer yet?
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Re: CH with CPH !???
« Reply #1 on: Mar 7th, 2004, 10:23pm » |
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MarkV,
I have been diagnosed with both CH and CPH. The best treatment that I know of for CPH is indomethacin. It will kill most of the stabs or make them minimal but you will still get the warning stab before the CH hits at a 9-10, or at least I do. This is not to be confused with shadows of CH as it IS different.
Good luck and pfvibes to ya
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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J.ten_Dam
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Re: CH with CPH !???
« Reply #2 on: Mar 8th, 2004, 5:48pm » |
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I also have been dignosed with both
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wish you PFDAN
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MarkV2
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Re: CH with CPH !???
« Reply #3 on: Mar 8th, 2004, 6:29pm » |
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Renee,
I had asked my previous neuro for Indo and he didn't think it would help. So I got my primary doc to give me some samples. It ended my CPH HAs right away. Problem was it felt like I drank gasoline after the 2nd day on it - I just can't tolerate it. I stopped the Indo immediately and ended up on ulcer meds for 8 weeks. Lost weight too because my stomach was pretty damaged and had to limit what I ate.
After 2 years, I just switched neuros. I'm going the lithium + verapamil route now starting today.
Thanks for both of the posts J.ten_Dam and Renee
- makes me feel better knowing I'm not the only one that has both symptoms (and Renee's right - the CPH traits can't be confused with shadows - they're distinctly different).
Mark
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fubar
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Re: CH with CPH !???
« Reply #4 on: Mar 8th, 2004, 6:42pm » |
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Same here. I can't handle the Indocin (indomethacin) as it produced near instant stomach ulcers for me. The very short, very painful stabbing pains are actually still with me even though CH is completely gone for the moment.
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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toader
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Re: CH with CPH !???
« Reply #5 on: Mar 8th, 2004, 11:36pm » |
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I've been taking indomethacin for a week and I don't think it's doing much so I'm going to stop taking it.
Honestly, I feel like I'm chasing my damn tail. Lions, tigers, bears, oh my! And Shadows and CPH too! By golly, is that a burning sensasation you have today? Why, yes, my eye has gone and caught fire again. Any type 2 extinguishers in the the house? <Later that evening> Lassie, Lassie, run for help! I have a Kip 9 drilling a hole in my temple. And little Billy has fallen into the well too!!
I don't know what to believe anymore. Do I really have CPH? Hell I don't know. My head hurts almost all the time even with the meds. So why take the meds?
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AlienSpaceGuy
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Re: CH with CPH !???
« Reply #6 on: Mar 9th, 2004, 12:00am » |
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Fubar,
You're not alone with the unbearable sides of indomethacin. 
However, there is another NSAID, Celebrex (celecoxib), although a bit less effective against CPH, but much friendlier to the stomach, that has some success for other CPH-heads.
You might give this a try.
ASG
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fubar
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Re: CH with CPH !???
« Reply #7 on: Mar 9th, 2004, 7:42pm » |
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ASG,
I'm actually quite happy with the reletively miniscule pain (as compared to CH) and NO MEDS. You heard me, no meds at all. I feel 1000% better these days, even if there is a demon in my head plucking out a note here and again. No big deal.
But, THANKS for the heads-up.
-Fu
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Renee
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Re: CH with CPH !???
« Reply #8 on: Mar 9th, 2004, 9:50pm » |
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Gang,
Are you taking the indomethacin ONLY on a full stomach?
I've taken Celebrex at 400mg per day, no problem but not much help for CPH so I changed to 200mg per day of Indomethacin ON A FULL STOMACH split into morning and evening doses.
I've had ulcers in the past but the Indomethacin didn't bother me if I ate first. The stabs don't disappear totally but come alot less often and with less steam.
I hope y'all find something that will help!
pf24/7
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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