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Topic: chronic paroxysmal hemicrania (CPH) (Read 500 times) |
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pepsi
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chronic paroxysmal hemicrania (CPH)
« on: Jul 25th, 2005, 12:26am » |
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DOES ANYONE OUT THERE UNDERSTAND ME? I have what is called Chronic Paroxysmal Hemicrania. It is a subgroup of the Chronic Form of Cluster Headaches. I have headaches w/o meds, 365 days a yr. 8-12 a day. My headaches are on the right side of my head and go down into my neck, to my right arm and also down both of my shoulder blades. The older I get the further south they travel. I have had them since I was 11 yrs. old, and now I am 24. I have been on 50 differnt meds. I was diagnosed at the Cleveland Clinic in Ohio when I was 19. It was a Blessing. I currently take 75 mg of indocin twice a day. It does keep them away, but I still get cycles every once in awhile. I am still learning about CPH, so if you have things to share please e-mail me.
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| « Last Edit: Aug 2nd, 2005, 6:40pm by pepsi » |
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Topical
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #1 on: Jul 25th, 2005, 4:55am » |
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Hi Pepsi,
I've read about CPH. We are just in hell, you are in the throne room of the devil. It's brutal. You should check out the Treatment forum. People are trying Kudzu an herbal supplement.
It seems to help some. Right now, it's still somewhat up in the air. If you are willing to give it a try ask your doctor first just to be safe. If I was you I would join one of the threads after reading it and ask some questions.
I would also take the caps lock off when posting as that is considered to be SHOUTING and is not liked by many and some people will ignore your posts.
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LeLimey
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #2 on: Jul 25th, 2005, 5:02am » |
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Hello Pepsi,
one of my very good friends here in the UK has PH too. I know they take something to couter the effects of the indocin on the stomach but I can't remember what it is. I'm not sure there is another treatment as effective as indocin for it but I will check and get back to you as soon as I can. I know my friend has tried O2 as well and whilst it doesn't take the pain away completely it DOES take the edge off it for her. It might well be worth your while trying that. The biggest problem with PH I know is that the attacks are so short as well as so frequent so getting to either a fire station or a emergency department while you get hit is damn nigh impossible.
Try asking your doctor about it to see if he would prescribe you a small tank to try. You will need a non rebreather mask too and it does need to be at 12-15LPM. I know some people can get by on a lower flow rate but its best to have the facility to go as high as you can in my opinion!
Let us know how you are doing, don't lose faith. We will help you and we WILL support you.
You aren't alone with this okay
I hope you get some PF time soon
Helen
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The mad viking
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #3 on: Jul 25th, 2005, 5:11am » |
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Hi there pepsi
First of all cph cronic or episodic must not be mistaken to be some rare form of cluster.
CPH is 1 spesific headache of its own.
Most peps do get good relief of indocid
stomackproblems is well known sideeffect on indo
Some do also respond very good on relpax.Perhaps you can ask your doc to try that
O2 or other clustermeds usually do not work on CPH
Please keep us informed
Svenn
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| « Last Edit: Jul 25th, 2005, 5:12am by The mad viking » |
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E-Double
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #4 on: Jul 25th, 2005, 8:27am » |
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http://jnnp.bmjjournals.com/cgi/content/full/72/suppl_2/ii19
Quote:Gastrointestinal side effects secondary to indomethacin may be treated with antacids, misoprostol, histamine H2 receptor antagonists, or proton pump inhibitors and should always be considered for patients who require long term treatment.
The mechanism behind the absolute responsiveness to indomethacin is unknown. It appears to be independent of indomethacin’s effect on prostaglandin synthesis, since other NSAIDs have little or no effect on PH.
For patients who cannot tolerate indomethacin one faces a difficult challenge. No other treatment is as consistently effective. We, and others, have tried COX-2 inhibitors and verapamil with limited success. |
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gMike
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #5 on: Jul 26th, 2005, 9:11pm » |
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I have Hemicrania Continua and take Indomethacin (75mg X 3 / day). I have found that Prevacid helps with the stomach problems but there are several other things you can do to minimize the stomach effects. Always (every time) take it on top of food and follow with a glass of water. Do not lie down for at least 30 min after taking the Indo.
You might want to talk to your Doc about a lower dose of Indo taken 3 times a day. IIRC, Indo's half-life in the bloodstream is about 4 hours.
Mike
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shannonfrommt
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #6 on: Jul 27th, 2005, 2:18am » |
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Hi there. My name is Shannon and I'm 35, well almost 36, year old. I have been getting migraines since I was little. I remember missing school for 1 or 2 weeks at a time because they were so bad. I was used as a guinea pig by dr's then. They would give my mom a prescription and tell her that if it didn't work, to bring me back and they'd give her another prescription. It wasn't until I was in 5th grade that we found out about chiropractors. It was a great help then. They eased up until the last few years. I get them every day for a month or so, then they go away for a couple weeks, just to come back again. I've had MRI's and EEG's and other tests done but the dr can't find out what's causing them. She said I'm getting cluster headaches because of the way another headache hits as soon as I get rid of one. A shot of Imitrex in the butt (ouch! the pain of that makes me forget about the migraine for a minuter or two) works but then it knocks me out for a day or two and I'm so out of it for almost a week from the shot. I've been checking the internet about migraines and was wondering how can I tell if it's really a migraine, a cluster headache, or CPH? I can't handle the pain anymore, this is the first time in years that I've had the vomiting with them, and I've been getting them 24/7 for the last month. HELP!
signed, Getting Desperate 
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E-Double
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #7 on: Jul 27th, 2005, 6:55am » |
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If you want to learn about any and all identified HA read through this......the International Headache Societies Frameset:
http://216.25.100.131/ihscommon/guidelines/pdfs/full_form_watermarked.pd f
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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thomas
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #8 on: Jul 27th, 2005, 2:02pm » |
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CPH has some similarities to CH, so does migraine, but they are not the same thing, try indomethicin, if you haven't already.
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Kris_in_SJ
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #9 on: Jul 27th, 2005, 8:38pm » |
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I've never heard of Imitrex knocking anyone out for a day, let alone several days! Are you sure that's what you got?
Plus, Trex (which should be given under the skin (not in the muscle) should do little more than make you feel a whole lot better, though just a little sleepy for an hour or so. And the injections don't hurt at all - certainly not compaired to the pain of a CHA!
Kris
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TCSmiley
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Re: chronic paroxysmal hemicrania (CPH)
« Reply #10 on: Sep 15th, 2005, 7:50pm » |
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 Hi Pepsi
Im a newbie and just read your message. I have been told I have CPH also. I have only had this for the last three months or so. I was also put on Indocid but was given the suppositry form as its milder on the stomach. I was also put on Nexium which is a treatment that helps prevent stomach problems like ulcers. I take one of these (suppositry) as late as I can at night and helps me sleep through to a reasonable time in the morning.(11pm till 7am) I take 100g suppositry at night and then 50g capsule 2 times during the day when needed. It doesnt leave me totally pain free but it aloughs me to cope with my day to day life. Good luck with your CPH. I hope you find some relief as your so young and have so much I life to experience. Take care and hang in there. TCSmiley
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