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Topic: Ladies CPH? (Read 974 times) |
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TracyS.
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Ladies CPH?
« on: Sep 30th, 2003, 1:15pm » |
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Hi ladies I write this to you becasue it is really more for us then guys. I was given a newsletter that is put out by the Michigan Head/Pain & neuro. Inst. by a friend who suffers,www.MHNI.com. In the 2003, issue 30 on page 2 I found a article that is very interesting. It is titked Unique Conditions Chronic Paroxysmal Hemicrania strikes mostly women and kids as young as 6. It states that this is a condition that is more common in women then clusters yet presents like clusters except that most cluster meds don't really work well for this problem. These headaches are also called "Indomethacin responsive headaches" This is because if this is the problem the right med treatment is indomethacin! The article goes on to tell of common systoms of this form of headache very close to clusters. I started the med yesterday I have to say already I feel more like myself then I have in months maybe it's just a "good day" vs. a bad day time will tell. But it gives me hope. I wanted to share the hope with those ladies who might be suffering and praying for the right treatment. It's worth a talk with the doc. anyway. By the way for anyone who is interested you can get a copy of teh newsletter in your snail mail box each by calling 734-677-6000 you don't have to be seeing a doc to get on the list. It was a good read! 
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eyes_afire
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Re: Ladies CPH?
« Reply #1 on: Sep 30th, 2003, 4:41pm » |
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Excellent post Tracy. I'm a guy and I even tried Indomethacin. It should be tried early on because:
1. If you do have CPH, you probably will have found a very effective treatment.
2. Indomethacin is dirt cheap.
3. Side effects are less scary than other CH meds.
For me that put it in the 'I'll try it, I've got nothing to lose' category. Unfortunately it didn't help me much (maybe with shadows a little bit) but it was worth a try.
Good luck
--- Steve
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Bob P
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Re: Ladies CPH?
« Reply #2 on: Sep 30th, 2003, 5:30pm » |
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Said it before and I'll say it again:
Anybody on this board, especially women, who haven't tried indocin on the chance that they CPH is nuts!!!
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Prense
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Re: Ladies CPH?
« Reply #3 on: Sep 30th, 2003, 5:39pm » |
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Absolutely Bob! ;D
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TracyS.
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Re: Ladies CPH?
« Reply #4 on: Sep 30th, 2003, 6:30pm » |
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Guess I haven't been around long enough on the board to see the indomethacin and CPH stuff this article was the first I had heard of it! You are right dirt cheap esp. compared to all the other stuff. Tell me why Neuros. don't talk much about CPH? If it's that easy then why not try the fix? Yes I am on the lets try it because it's cheap route. Let's hope it lasts! ;D
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UAL_FlyGal
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Re: Ladies CPH?
« Reply #5 on: Oct 1st, 2003, 7:15pm » |
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Here's a very interesting article concerning indomethacin. I'm getting some tomorrow!!
[link]http://www.google.com/search?q=cache:IqpsNE7z7A8J:www.sbce.med.br/resumo ~2.doc+cluster+Headache+Secondary+to+Organic+Disease&hl=en&ie=UTF-8[/link]
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gwen
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Re: Ladies CPH?
« Reply #6 on: Oct 8th, 2003, 12:50pm » |
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hi tracey, nice to see your still on the board. been on indomethacin for 8 weks now, did try stoping the tablets for 5-6 days but the dam pain started to build up again,  so it looks like i i cant come of them. dont want to go back there. pain was unbearable.  at least with the tablets you get your life back.  I really do feel for cluster sufferers that try every med going. my heart goes out to them. I really do hope they find a bloody cure soon to end this terrible pain. I will check back when i can.
Take care all  
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TracyS.
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Re: Ladies CPH?
« Reply #7 on: Oct 9th, 2003, 4:22pm » |
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Hey all saw head doc. on Tuesday. She said when you get relief from indomethicain that it is a neuro. pathway swelling problem. Could be a result of chronic cluster or alleregies or both!!! I have a problem with dust and mold I have found out, although they egg the clusters on most likely they are not the cause. But it does add to the mix. The doc. gave me 2 new meds for me to try. although they will take a few weeks to see if they really work. One for sleep since I can't stay asleep and the other is not new to most of you I am sure it's Neuronetin or something along that line I don't have it in front of me. And have been on so much different stuff they all run together. Who knows maybe this will be the fix for me, I'll keep you all posted! Best wishes to you all!
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ckelly181
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Re: Ladies CPH?
« Reply #8 on: Oct 9th, 2003, 7:31pm » |
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hey - this is intriguing stuff...I haven't tried indomethacin and as yet have not found an effective preventative. Can anyone address any of these questions I have?
I'm wondering about CPH - I haven't heard of this before. This is some info I found from SUNY Upstate Medical University:
Quote:| No abortive treatment is known for chronic paroxysmal hemicrania (CPH) or its varient, episodic paroxysmal hemicrania. Since the attacks of these paroxysmal hemicranias last less than an hour, and generally about 10 to 15 minutes, any abortive therapy would have to act with dramatic swiftness to be of value. |
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But, does O2 work for CPH? Imitrex? (both work for me).
The article http://www.upstate.edu/neurology/haas/hpcldx.htm also states that CPH attacks with a frequency above 5 per day for more than half of the time. Is that absolute? (I usually have 2- 3 a day, consistently).
I, thankfully am about a week out of my cycle (1.5 years of freedom now, I hope!!), but I don't want to let go of my search for some possible preventatives next time.
You know how it is when a cycle starts - you go through a toxic waste dump trying to find a med that works.
Thanks to the women here - (the guys, too, but it's SO nice to have the female take on this stuff.)
Chris
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ckelly181
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Re: Ladies CPH?
« Reply #9 on: Oct 9th, 2003, 8:41pm » |
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Spoke too soon. Shouldn't have assumed it was over - just started a shadow on the side of my nose into my eye...gah. I'm just weary about this stuff...
Chris
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TracyS.
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Re: Ladies CPH?
« Reply #10 on: Oct 10th, 2003, 9:43am » |
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Hey Chris you have good questions. From what little I understand CPH is a swelling of the vessels in the head. I learned of this from a newsletter a friend sent me that came from the Neuro. clinic in Ann Arbor MI. I posted the web address in my first post of this topic. They just put out a newsletter the article was on page 2. You can get on the mailing list for free and receive newsletters to get the latest info. out of their clinic. I understand they are among the leading clinics in neuro. stuff, both headaches and injury. From what I have read is no O2 and imitrex don't work on this too well. The indomethacin should take care of it if this is the problem. My GP put me on it at my request a week before I saw my neuro. He put me on 25mg 3 times a day. I have seen some relief. My neruo said my GP is VERY carefule and docs. go nuts about kidney problems with people on this stuff so it makes sense that he put me on the smallest does. But she said it takes 50mg 3 times a day to really lick the problem. So if you try it keep that in mind, 50mg if you can handle it and your doc will. Also it is cheap compared to the other meds! One final note, my neruo said I have gone from cluster cycle to this, a result of most likely not getting the clusters handled, inflammed my neruo pathways so you get this! Lovely. Best of luck hope it helps. Oh the head clinic is www.MHNI.com must be caps that way or you get something else not related! P.S not having a great day so please excuse the typeo's for those who look at that stuff!
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gwen
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Re: Ladies CPH?
« Reply #11 on: Oct 10th, 2003, 5:24pm » |
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very interesting website you posted there tracey. do keep us up to date with any more new updates. really apreciate it. Hope you dont mind me asking you a question. when you first started having these headaches did it start at the back of your head like bad pressure pain? and then worked its way around the side and front of your head, then starts effecting your neck. just wondered if anybody else started off like that.
take care
gwen
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TracyS.
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Re: Ladies CPH?
« Reply #12 on: Oct 11th, 2003, 12:10pm » |
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No I can't say I have that problem. But I do see a chiropractor sometimes, helps with my balance. I get a hot flash then shakes then head pain face right side and eye area then if I do nothing about it, goes to top middle right side of my head. My neuro wasn't surprised. If I can't get any relief from anything during the day by the evening I am worthless and in major pain. I have found too that allergies are playing a role in this Claritin D has helped with the headache from going full blown. My neuro. says yes that is part of it, but not all of it. The list of meds I take is enough to kill a liver! Oh well hopefully it won't be forever. I have to say I am waiting for it to freeze here and see just how much that plays in all this. In the meantime I must admit I do feel better then I have in many weeks. I guess the drugs help! Best wishes to you all and I'll let you know if I find anything else of news worth reporting! Later...
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juvy
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Re: Ladies CPH?
« Reply #13 on: Oct 14th, 2003, 12:58pm » |
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Tracey,
Thanks for the heads up on the website and newsletter.
I have been diagnosed with CPH unfortunately I'm in the rare 5% which does not respond to Indometh. It does take the edge off but does not stop the attacks completely.
If anyone else has any links for CPH please let me know as I'm trying to get enough information to update my website.
Thanks,
~Juvy
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TracyS.
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Re: Ladies CPH?
« Reply #14 on: Oct 15th, 2003, 4:09pm » |
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How did they figure it was CPH and not something else? Takes the edge off? I can relate I think maybe I am not on a high enough dose only taking 25mg. Plus other meds. But I thought one of the things about CPH was that it always responds to Indomethacin? Do you have other info. or sites to look at about this? If so please forward them to me, or post here I would like to do more reading!!! Thanks..
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juvy
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Re: Ladies CPH?
« Reply #15 on: Oct 17th, 2003, 4:15am » |
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Tracey,
I'm on Indomethacin Retard-75mg. For 95% of the cases Indometh works unfortunately for 5% of us it doesn't.
Check out the post
Informative Website on CH and related Conditions, there is also some information in there for CPH. I've been doing a lot of research on it lately, if i find anything interesting, I'll post it.
cheers,
April
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juvy
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Re: Ladies CPH?
« Reply #16 on: Oct 17th, 2003, 4:22am » |
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on Oct 9th, 2003, 7:31pm, ckelly181 wrote:hey - this is intriguing stuff...I haven't tried indomethacin and as yet have not found an effective preventative. Can anyone address any of these questions I have?
But, does O2 work for CPH? Imitrex? (both work for me).
Chris |
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As far as I know O2 and Imitrex have no effect on CPH, I have tried both and zilch, zich, nada on effect.
Cheers,
April
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juvy
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Re: Ladies CPH?
« Reply #17 on: Oct 17th, 2003, 4:29am » |
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on Oct 15th, 2003, 4:09pm, TracyS. wrote:| How did they figure it was CPH and not something else? |
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Well first with the symptoms being so much like CH they gave me just about every drug in the world to cure that. Did not even make a dent in the pain. Veramapil (sp?) made every part of my body go numb but my head.
Finally I was sent to the medical university in Leiden, I sent them a diary I had made of the pain, when it hit, where the pain was located in my skull, how long it would last, other side effects like scalp tenderness, tension in the neck. Everything I could think of, what I ate that day, what i was doing when the pain hit. They read the diary and immediately said I had CPH. they tried Indomethacin Retard 75 and this helps on most days, but on the rough days (1-2 times a month) it just takes the edge off. But all in all it has helped.
Bad part is the side effects, nausea for 30 minutes after i take it and anal irritation and bleeding. I hear over a long period of time it may cause ulcers in the stomach lining, so If i'm having a few good days, I'll go off the meds until I can't handle it on my own, then I continue.
cheers,
Juvy
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Marijke
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Re: Ladies CPH?
« Reply #18 on: Oct 22nd, 2003, 1:26pm » |
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I don't know if they're available in the US, but here (Belgium, Europe) there are 50 and 100mg suppo's of indomethacin. Bit easier on the stomach.
Guess I have CH and not CPH (attacks 45 mins and very responsive to verapamil), but use it for shadows.
And dirt cheap indeed: around $1.50 per 12.
pfdan
Marijke
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Yos
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Re: Ladies CPH?
« Reply #19 on: Oct 22nd, 2003, 1:50pm » |
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My wife has been diagnosed with CPH, although she too is non-responsive to Indomethacin. It does nothing at all for her.
She has been given a long string of things that did nothing but provide various side effects and is now on Lamictal, which gave her total relief at first, but now seems to not be working any more - at least not very well. She wonders if she may not have SUNCT syndrome instead of CPH, but her neuro insists it is CPH.
I guess we won the lottery on headaches - me with episodic clusters, and her with a yet to be determined, or at least treated, chronic headache.
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ClstrHeadSupport
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Re: Ladies CPH?
« Reply #20 on: Oct 23rd, 2003, 3:10pm » |
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Can men try this also? Looking for a cure for my honey, willing to try anything.
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Sara Pope
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TracyS.
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Re: Ladies CPH?
« Reply #21 on: Oct 23rd, 2003, 5:29pm » |
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My understanding is yes. It's just it more often strikes women then men so I directed the post to women! But it is worth a try if nothing else has worked. My nuero. said 50mg 3 times a day if the stomache can handle it. My GP put m eon 25mg 3 times a day becasue he is so timid when it comes to meds. I haven't uped m y dose becasue I am building on 2 other meds in the mean time and still taking the indomethicain. Getting to where i can kind of function on a daily schedule and not have such a head problem. but if I slide on my meds. I have trouble!
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gwen
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Re: Ladies CPH?
« Reply #22 on: Oct 27th, 2003, 5:15pm » |
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hi tracey, i came across some information on other types of drugs when indomethacin is not tolerated (or effective). one case reported stated that patients with cph unresponsive to indomethacin had her headaches suppressed by acetazolamide (diamox) in a dosage of 250mg three times daily. more recently a woman with cph who had to discontinue indomethacin for intolerable gastric symtoms due to multiple ulcers. she was then treated with celecoxib (celebrex), a drug in a new class of NSAIDs which decrease prostaglandin synthesis by inhibiting the enzyme cyclo-oxygenase-2 COX-2) without affecting cyclo-oxygenase-1, as does indomethacin and older NSAIDs such as aspirin, ibuprofen, etc. hope this information will help, juvy, yos and tracey, and anyone else.
take care
gwen.
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juvy
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Re: Ladies CPH?
« Reply #23 on: Oct 28th, 2003, 2:08am » |
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on Oct 22nd, 2003, 1:50pm, Yos wrote:My wife has been diagnosed with CPH, although she too is non-responsive to Indomethacin. It does nothing at all for her.
She wonders if she may not have SUNCT syndrome instead of CPH, but her neuro insists it is CPH.
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Yos,
some sufferers of CPH experience SUNCT symptoms as well. I consider them my shadows since they occur everyday and get even worse right before a CPH attack.
~juvy
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TracyS.
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Re: Ladies CPH?
« Reply #24 on: Oct 29th, 2003, 9:33pm » |
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Hey what is SUNCT? Haven't heard of that one. Also tell me about having a cold and clusters and CPH please. I have found my head is normal but the rest of me has a rotten head cold. In a way it's a God send, it's the first time since May19, 2003 I haven't had head pain! But tell me will it come back onc ethe cold gets better? I guess it's answered prayers but I didn't know what I was in for, a cold to get my head to stop! later...
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