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emaraldeyes4joel
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New here with CPH
« on: Nov 26th, 2006, 2:53am » |
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Hi Everyone,
I just wanted to let everyone know how glad I am to have found this site and to become a member and a part of it. I was recently diagnosed with Chronic Paroxysmal Hemicrania. It is a rare variant form of cluster headaches. CPH is only responsive to one medicine and that is Indomethacin. I don't know how long I have really had CPH because I have been telling the Neuros about the severe stabbing/ ice pick pain for awhile and they said they thought it was just part of my migraines. I have had horrible migraines since I was a small child. I started seeing Neuros when I was 10 yrs old for my migraines and head pains. I'm just glad I finally got a Neuro to look past the Migraine and listen to me when I said there is another type of headache going on here!! Anyway that's my story. I have looked up alot of info. on Chronic Paroxysmal Hemicrania but I would really love to find other sufferers out there to talk to about their personal experiences with this condition. So if anybody out there has this or knows somebody that has CPH have them write me PLEASE???? I would really truly appreciate it and any other information you guys and gals can give me. Thanks in advance for everything.
Emarald  
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Bless you all, wishing pain free days and nights to all.
Remember ........... This to shall pass.
One day, one hour, one minute, one second at a time.
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BB
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Re: New here with CPH
« Reply #1 on: Nov 26th, 2006, 4:29am » |
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Hello Emarald,
Welcome to the Board and thank you for posting your story.
Sorry to hear that you have migraine as well as CPH, must be hard to cope. Are you on Indomethacin now? is it working for you? What dose are you taking?
My husband has Cluster headache and Hemicrania Continua which is similar to CPH. He has been on Indomethacin 75 mgs twice a day for a few months now and it pretty much settled that headache, but he still has CH though.
Indomethacin in a way is the diagnostic test for HC and CPH as it works almost completely for the symptoms. For my husband, it worked well after 3 days starting it, twice, so it pretty much confirmed the diagnosis for him.
Indomethacin can be harsh on the stomach so you need to make sure you eat first before taking it and may need to consider taking something to protect your stomach if your doctor has not already prescribed it for you.
Best wishes, I hope you will be painfree.
Annette
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E-Double
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Re: New here with CPH
« Reply #2 on: Nov 26th, 2006, 8:30am » |
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Glad you found a doctor to look deeper.
Indomethacin can be a wonder med for many different HA types. Unfortunately it tends to do squat for CH with exception to the rare few who seem to have gotten some relief while using HIGH doses of a suppository.
There are no doubt some people here who have this in addition to CH or instead of.
Some who appear to have it go out and get releif once they figure it out and others seem to sometimes be defiant in a weird way and continue along a path of inappropriate treatment for Clusters when relief could be found. Weird but apparently true (at least over the internet)
Anyway, happy you have found relief and happy you don't have clusters.
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kcopelin
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Re: New here with CPH
« Reply #3 on: Nov 26th, 2006, 10:40am » |
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Emarald,
why are you mooning us on your first post? Is that a sign of commanraderie where you come from?
kathy
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Words count, chose carefully.
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emaraldeyes4joel
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Re: New here with CPH
« Reply #4 on: Nov 26th, 2006, 8:48pm » |
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I'm sorry Kathy. Please forgive me but it was such a cute smilie I couldn't pass it up! I had never seen a smilie doing that before! Sorry 
Em  
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Bless you all, wishing pain free days and nights to all.
Remember ........... This to shall pass.
One day, one hour, one minute, one second at a time.
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emaraldeyes4joel
New Board Newbie
I love YaBB 1G - SP1!
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Re: New here with CPH
« Reply #5 on: Nov 26th, 2006, 9:16pm » |
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Annette,
Yes, I'm on Indomethacin. They started me out on 75mg in the hospital along with me being on an IV drip of DHE after 48 hrs I didn't feel the severe pain anymore, but I could still feel the pressure of the headache. They sent me home and the doc increased it to 100mg. After 2 days of being home and on that dose the pain came back and increasingly got worse. Doc upped it again just last Monday to 150mg. He says and I have found in the research some people don't respond except to high doses as much as 300mg. I have had GERD and had a procedure that had pretty much taken care of all of my reflux problems. Since being put on Topamax in October and Indomethacin in November (especially the last 2 weeks) the Reflux and stomach pain has come back with a vengence!!!! I do take all of my medicines with a full meal and Prilosec 30 minutes before eating. No help still in horrible stomach pain and bad reflux all the time. I don't know what to do. One hand I don't want to tear up my stomach and my esophagus (my mom has those problems and I don't want them) and if I stop the Indomethacin and Topamax then I will still have to live with the same debilitating headaches that I have been for so long. I don't know what to do. It seems like a catch 22. Anybody out there got some advice for me?  
Thanx! Emarald
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Bless you all, wishing pain free days and nights to all.
Remember ........... This to shall pass.
One day, one hour, one minute, one second at a time.
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BB
CH.com Alumnus
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I love YaBB 1G - SP1!
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Re: New here with CPH
« Reply #6 on: Nov 26th, 2006, 9:41pm » |
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Have you talked to your doc about Indomethacin suppositories? These can be put up your bottom which can be a bit tricky but will save your stomach, plus it will make that mooning smilie appropriate 
Good luck with it all.
Annette
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