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traceychen
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CPH specifically--Part 2
« on: Sep 22nd, 2003, 4:14pm » |
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message continued:
I would like to be able to target my message to people with CPH specifically because it does appear to be very different from CH--and I’m getting the sense that so few people have CPH that we’re still being treated as though it’s not as bad as it really is. I can see from the letters up there that I’m not the only one who feels I would rather kill myself (or be killed or just die somehow) than live with these headaches-- I HAVE to be able to stop them, they are life-altering. And not enough doctors even know what it is. I would be great if I could find all the people who have CPH and mobilize them some how--or at least keep them in contact--or find all the doctors who ARE trying to treat and/or do research on these headaches and make sure they stay informed in contact with all of us (the CPH patients), so that they can all hear all our personal stories/histories, and know where we are and who our doctors are so that they can contact us if they want to test a new treatment.
For example, I work for a consulting firm that services drug companies, and one of our current clients has an agent in development for CH, but I don’t know if it will also work on CPH. I don’t have direct client contact and don’t think it would be appropriate for me to ask the project manager who does to ask for me (because it’s for a personal reason, has nothing to do with their project), but it would be great to have a webpage just for CPH doctors and patients where I could tell them about news like this--telling the patients what company it is so that maybe they could volunteer to be trial participants and asking the doctors whether they think it would work on CPH, which my old headache doctor says is a subtype of CH. I was very happy to see that this company was also developing the same agent for overactive bladder--because I have THAT condition as well (I have to urinate no less than 25 times a day, and each time only a tiny bit will come out--but if I don’t the urge is so strong it feels like I’m going to wet my pants) and I wonder how many other CPH sufferers have it too. I would never use the agent for overactive bladder in the formulation they are considering for that condition though (intravesical installation--i.e., a catheter into the bladder--yow!); the reason I was happy to see that it was in development for both is that it shows that somebody is making the connection between CH and overactive bladder (that they are both probably nerve-based conditions). So maybe some day, we’ll understand whatever systemic nerve disorder is leading to both conditions. The formulation they’re considering for the agent in CH is a nasal spray. I would love to have a nasal spray that works for CPH--so I don’t have to continue risking putting a hole in my stomach taking indomethacin--but I don’t know if CH and CPH affect the same nerves in your head and if the nasal spray affects only the nerve that is affected in CH, but not the one affected in CPH (which, at least in my case, causes pain above/behind my ear rather than near my eye), then I guess it wouldn’t work for me. So I’d really like to find an expert on the nerves affected in each of these conditions to find that out.
Is there any way I can contact all the visitors to your site who have CPH specifically? Or maybe you could start a separate page on your site just for that subtype of CH. What do you think?
Thanks for reading all this if you’ve gotten this far. I really appreciate that you’re keeping this website up.
Sincerely,
Tracey Chen
tchen@plan-a.com
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BarbaraD
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Re: CPH specifically--Part 2
« Reply #1 on: Sep 22nd, 2003, 4:31pm » |
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CPH, as you said is a whole different ball game from CH. When DJ put this website up years ago he put it up because he suffered from CH and wanted to know if he was alone. Personally, I was sitting home and thought I was the only one in the world who had CH and typed in "clusterheadaches" on my search thingy and found DJ's site. I've been here ever since.
Maybe that's what you should do. Set up a website for CPH and see how many visitors you have that will come visit you. That's how we got our research for CH and got OUCH together to get something done. It's called numbers. It may take some time, but it's worth a try. This board has been going since 98. The research didn't come overnight - it's taken years to get it together to help.
I don't have a clue how many here suffer from both CH and CPH - probably a few,but not the numbers you're looking for. It's the same with migraines. Some of us suffer from migraines along with CH, but not enough of us to have a forum on migraines. This site is dedicated to CH and that's how we keep it uncluttered with other ailments. We all have them, but they're the minority so we don't go into them. We do however refer sufferers to other boards if they post here asking.
I wish you luck in finding help.
Hugs BD
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What don't kill ya, Makes ya stonger!
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traceychen
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Re: CPH specifically--Part 2
« Reply #2 on: Sep 22nd, 2003, 4:46pm » |
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Dear BarbaraD,
Thanks for responding. I wish I knew how to start I site for CPH (I know very little about internet and computer stuff), but since it is a form of CH I was hoping maybe I could find some way to connect with the others with this specific form of CH on this site without clogging up the messages back and forth to those who have the traditional more common CH.
Oh well.
Thanks anyway
Love Tracey
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Ueli
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Re: CPH specifically--Part 2
« Reply #3 on: Sep 22nd, 2003, 8:54pm » |
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I beg to differ,
CH, CPH, SUNCT syndrome and hemnicrania continua are just some areas on a more or less continuous spectrum of related headaches. There are border cases where even the top notch specialists have difficulties to decide which is which.
We are rather protective if some meegrainer wants to discuss his/her malady here, and that for a good reason: meegrainer outnumber us by a hundred to one, and we must ward off the danger that this gets just another migraine board. In fact, that was the very reason that DJ created this site, he got weary to dig through hundreds of meegraine posts to find something about CH.
On the other hand, the number of CPH sufferers is so small that we can easily accommodate them on this board, and it makes sense since CH and CPH are so similar. (Maybe one day a CPH sufferer gets so tired to wade through lots of CH posts that he creates his own site.  )
I at least would rather see posts about CPH than the constant football and hookey shit. ;D
PFNADs
Ueli
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traceychen
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Re: CPH specifically--Part 2
« Reply #4 on: Sep 23rd, 2003, 12:25pm » |
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Thanks Ueli,
I'll check back here every now and again to see if there's anything new on the horizon for the handful of CPH sufferers, and promise not to clog up the board much; I will rarely have time to any way (lack of time is another reason I'm not out trying to learn how to start my own site--where do people find the time to do such amazing things! I can barely find the time to do the things necessary to stay alive!)
Love Tracey
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don
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Re: CPH specifically--Part 2
« Reply #5 on: Sep 23rd, 2003, 12:45pm » |
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The new diagnosis criteria that will be published next month were given to me in Rome. (Another little advantage of going to Rome, early news)
They are at home and I will post them tommorow.
I do know this , Cluster, CPH, and SUNCT are all under the same classification so there should be no mix up with migraine
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| « Last Edit: Sep 23rd, 2003, 12:47pm by don » |
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gwen
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Re: CPH specifically--Part 2
« Reply #7 on: Sep 23rd, 2003, 1:03pm » |
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Hi tracey, A very interesting discussion i read. My neurologist once said to me, i think your suffering cluster headaches. But through talking to alison on the OUCH chatroom. I found out i was suffering CPH. Found that indomethacin worked. But i have been seeing a cranial osteopath, had 5 treatments and i am now down to 1 tablet a day. Been on the indomethacin tablets for 7 weeks now. Nice to meet someone else who has CPH.
But talking to valerie hobbs one of the members from OUCH uk, when I phoned her back up to tell her i was suffering from hemicrania she was shocked because my symptoms were like ch. So you see i was a bit confused my self. ???. But at the time when i was suffering this excruciating pain, all i now is that i felt suicidal. but thank god am pf at the moment. Question is will it last.
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don
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Re: CPH specifically--Part 2
« Reply #8 on: Sep 23rd, 2003, 1:14pm » |
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Thanks Bob
Now I dont have to go home. I can stay here at work and play on the computer.
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traceychen
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Re: CPH specifically--Part 2
« Reply #9 on: Sep 23rd, 2003, 1:15pm » |
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Hi Gwen,
Good to meet you. The bad news is that I've had this darn thing for 21 years already (and it wasn't properly diagnosed for years). The other bad news is that indomethacin does NOT always work for me (despite the fact that doctors claim 100% effectiveness against this headache). When it does work, it works completely (not decreasing its severity, but eliminating the headache entirely), but it doesn't always work. It didn't work when I first tried it many years ago, and it doesn't work when I'm on Lipitor.
I wish I had some good news to balance that out, but at least we haven't killed ourselves yet.
E-mail me any time you feel like it; maybe some day there will be a cure.
Love Tracey at tchen@plan-a.com
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| « Last Edit: Sep 23rd, 2003, 1:15pm by traceychen » |
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