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        New Message Board Archives >> Jul-Sep 2003 >> CPH specifically--but new CH drug Part 1
        
(Message started by: traceychen on Sep 22^nd, 2003, 4:13pm)

Title: CPH specifically--but new CH drug Part 1
Post by traceychen on Sep 22^nd, 2003, 4:13pm

Dear DJ,

Hi [I just realized that the way to send this to you is in a little box that I’m not sure can hold a message as long as what I’ve written here --12,01 words--so I will post this to the message board as well just in case all of it doesn’t come through for you.], OOPS now I’m told it’s too long for the message board too--so I’m going to break it up into parts. Here’s Part I:

I first found your website a couple of years ago. I posted a long letter on it, which I couldn’t find anymore, but that’s not why I’m writing. I just checked the website again because my CPH has stopped responding to indomethacin again. I searched for CPH, hoping to see if anyone had heard of anything new for CPH, but all of what came up was at least 3 years old and was more along the lines of "I’m new, tell me about this headache."

What I would love to be able to do is to find a way to reach all of the people who have CPH (not the traditional CH):

-- to ask them what success they’ve had with various treatments (assuming they’ve tried things other than indomethacin) that they can be sure was attributable to the treatment rather than to just a normal decrease in the frequency of the attacks (because the frequency does vary naturally without treatment)

--to post a checklist of other symptoms doctors have been unable to explain (so that we can see if we have any in common that might be associated with whatever the cause of the headache is so that we can inform researchers); I especially want to do this because in some of the letters on your site I do see people describing weird symptoms that I have too (like having the same intense, sharp, stabbing pain in different parts of my body off and on--but so far never for as long as the pain lasts on my head).

--to let them know things like the fact that when doctors insisted I take a drug to lower my cholesterol (Lipitor), the headaches came on with a vengeance and could no longer be quieted by indomethacin, but that they started responding to indomethacin again as soon as I stopped taking the Lipitor--and of interest: their frequency increased (and responsiveness to indomethacin decreased) when I lowered my cholesterol on my own by eating oatmeal with flaxseed meal mixed in every morning for a few months. I also recall that they were bad years ago when I was drinking more red wine that normal and that my doctor at the time had been very impressed that my cholesterol dropped (saying "oh, you must be keeping up with exercise") when in fact it dropped only because I had increased the amount of red wine I was drinking (I wasn’t exercising at all and the wine was the only difference in my life between the cholesterol tests then). So I’m wondering if cholesterol levels are mixed up in the pathophysiology of CPH (and wish researchers would look into that), and wondering if anybody else with CPH has noticed this or would be willing to pay attention to it to see if it is happening with them.