Journal of Migraine Sufferers

Dee, I know that you meant no harm, but that statement that "if Imitrex works, it is a migraine" is actually harmful for many migraine sufferers, because it implies that if imitrex DOESN'T work, then it is NOT a migraine (I know that is not what you said, so I stress that I am not criticizing you) Some doctors have this philosophy, that if imitrex doesn't help, then you must not have migraines... Actually, imitrex and the other sumatriptin meds only work for about 80% of migraineurs. This mindset is damaging to patients and irresponsible of doctors. Again, I know that is not what you meant, but I think it is important to point this out. Sometimes even other migraineurs have this attitude if imitrex works for them. I worked with a woman who would tell the others in the office how well imitrex worked and how migraines shouldn't cause anyone to miss work, etc. When this kind of info is spread to people who aren't educated about migraines, it can create many misconceptions and perpetuate the misunderstanding so many of us experience.
USA - Date: 12/01/98 (Tue) Time: 11:37:16 AM
For Dee. Thank you for your offer of the list of MSGs. I would like that very much. I got a pretty good list off the inter net but they certianly could have missed something. I also react to nitrates, odors of many things especially cigerattes. I'm looking forward to the added list. Thanks! Susan=)
Susan <>
MN USA - Date: 12/01/98 (Tue) Time: 09:48:14 AM
Hi all. Hope everyone's having a better day today. I'm a little nervous because my niece's birthday is tomorrow (oh, boy, a houseful of giggling, screamy 13 year old girls! whoopee.) I can hear it now: "Oh, isn't Leonardo cuuuuuuuute!" It's a migraine waiting to happen. Anyway, for those of you who don't already know, I'm writing a book on the human side of migraines. How they affect our lives, families, etc. etc. I plan on donating part of the proceeds for migraine research, but mostly, I'm trying to get the point across that we sufferers are not drug addicts, or whiners. We are people in pain, and deserve to be treated with respect and dignity, that this condition has a big effect on our lives, and is not "just a headache". The book is going really well, but I still need some more information. If anyone is interested in participating, all I'd ask is that you answer a list of 18 questions, and e-mail them back to me. That's all! I won't ask for names or addresses, or anything like that. Most of the questions are about your experiences with migraines. If you'd like to participate, send me a message, and I'll e-mail you the questions. To those of you who've already answered my questions, a great big thank you! You've been tremendously helpful, and the book is turning out to be really great. It's pretty powerful, if I do say so myself. :) People who've been reading the first draft have come away... well, stunned is the best word to describe it. As if they have to rethink everything they've ever thought about migraines and the people who suffer them. So, if you'd like to answer some questions, just let me know. THANKS!
Kristine <>
Brookfield, IL USA - Date: 12/01/98 (Tue) Time: 09:47:48 AM
For Susan and others who are experimenting with eliminating MSG I jsut got a comprehensive list from a friend of all the names for MSG and related substances. I dont have it here but will be happy to post it if it would help anyone. unfortunately for me, I dont think MSG is my trigger, but for others this is the key. Also, in response to a recent posting, I dont know what is the definition of a migraine. A friend who has identical headaches to mine was told hers were NOT migraines. How would her doctor come to this conclusion? I guess my working definition is the one my ENT doc uses: if imitrex stops it, it is a migraine!!?? Dee
USA - Date: 12/01/98 (Tue) Time: 08:00:25 AM
Is there anyone else out there who is awakened early in the morning (2 a.m.-6 a.m.) by throbbing pain that is only relieved by getting up? My neurlolgist says I have two kinds of migraines; the "regular" kind that come on during the day as constant pain (I can stop these with Excedrine), and then I have these early morning migraines that wake me up with the throbbing pain. Once I get out of bed, the pain subsides to a constant, but bearable pain that eventually goes away on its own over the next 2 to 4 hours. Prescription medication doesn't effect them, nor does Excedrine. I've not run into anybody who has this kind of migraine and haven't been able to find any information on it. I can go for several weeks with no headaches, but once I have one I can count on another one or two within a few days. My mother is a migraine sufferer, but I never had headaches at all until we moved to Virginia 8 years ago, when I was 35. If anybody else suffers this kind of migraine I'd love to hear from you.
Faye <>
Roanoke, VA USA - Date: 12/01/98 (Tue) Time: 05:06:13 AM
Hello, My name is Gwendolyn (Gwen) 26 and I suffer from severe headaches. I have not classified them as migraines at this point because I really do not understand the difference between a headache and a migraine. In reading the entries, I have identified with several of you. For the past two years I have had frequent headaches and the pain has been so unbearable at times that I have had to catch onto a wall or someone just to handle the sharp pains that are passing through my head at the time. The headaches usually stay with me for at least 12 hours and a maximum of 48. Headache medicine does not work and I am currently using Excedrin but I go thru them like they are mm's. My family does not have a history of headaches, but we do have history of allegeries. I do not have allegeries, but my noise is sensitive to smells and fragrances. I have eliminated food. I do however have a hormone inbalance, could my headaches stem from this lack of balance? If so, what do I do to correct it. I can not take birth control pills for they increase the headaches and make me sick. I do not have any children yet, so the removal of my ovaries is out of the question. Please help me find some answers, if you have any. I will pray for each and everyone of you who suffer as I do.
Gwendolyn Johnson <>
Greensboro, NC USA - Date: 12/01/98 (Tue) Time: 12:09:49 AM