Journal of Migraine Sufferers

To whom it may concern: (this is copied from a letter I wrote on here): I have been having steady migraines (almost daily) since I was around 29-32 years old (I am now 48)(also, some childhood migraines and extreme vertigo/car sickness/auras; but didn't know what that was all about, as a child); and, possess another neurological, undiagnosed glitch that goes with it, though that might just be extreme migraine equivalency (loss of balance, parethesias, mood swings, numbness, weakness,vision problems, etc.) The pain has been excruciating, and the only thing that helps is codeine and/or Fioricet, and Tigan (for nausea);(I am addicted to both codeine and to Fioricet, by now). Inderal, Verapamil, did nothing (plus, Inderal is now out because of my asthma); Imitrex, I cannot take too often, Amytriptaline made me sick, as did DHE, and Midrin...Feverfew made them worse...Davocet helps a little, but not much; Torodol does nothing, and neither does Compazine. Demerol makes me even more nauseated. Calcium, Magnesium, and Zinc seem to help a little, too (mixed together in one OTC pill). The only thing they could suggest to me in the past, was either Lithium, or Depacoate (I refuse to take either, because of the extreme side effects, and the alopecia/gum disease/liver problems, which I already have). But now, I hear they are trying out Klonopin (a long acting Benzodiazapine-- somewhat habituating, but still, the lesser of some of the other addictine meds). I have just taken a dose yesterday and today, and I think that I feel a difference, already! (It is also used for anxiety, and as an anticonvulsant). It also makes one drowsy, which is great at night! I'm a A bit "hung-over" during the day, but hopefully, I can get used to that. I wish that I could also try STADOL, but with my drug abuse background, I don't think any doctor would give it to me. It also makes me angry, the way we are sometimes treated in ER's! On the other hand, I have seen some hospitals-- Lankenau in Wynnewood, PA, for example-- where they went out of their way to respect migraineurs, and even to keep the environment dark and quiet!!! (Unfortunately, I don't live near there anymore). Most of the time, I have been taken seriously and respected, but occasionally, I've not been and they thought I was just "drug seeking". It is difficult for me too, because I really DO have a drug abuse history and yet, the excruciating pain is very real, and I cannot handle that, either! So in my case, I have both problems! I sort of "fall between the cracks". I go to the 12-STEP groups and they tell me one thing (Like, "If you're willing, you can detox and stay off drugs"), and when I cannot bear it any longer, I go to an understanding doctor, and the entire vicious cycle begins all over again. I have tried addiction doctors, neurologists, headache specialists, GP's/Internists, etc; and curiously, they all have different approaches! Well, I hope that the Klonopin helps; other wise, the only other thing I can think of doing, is to beg my new pain doctor for either methodone or heroin . Thank you for running this support site! Linette :-}
Linette <>
Lansdowne, PA USA -

I had my first head ache ever on 7/25/95. I was at work and a large shimmering letter "C" appeared in the air about 4 feet in front of me. I thought I was having a stroke and went to the Dr. pronto. I didn't have a headache, but the Dr. told me I'd get a migraine as soon as the big C went away. He shot some demerol in my kiester and sent me home. I tried the migraine pills (I forget what...) he gave me, but they didn't really work. I wasn't stressed out or anything, it was lunchtime and I wasn't doing anything. I found that large doses of narcotics help sometimes; vicodin or codeine, but the thing that has helped me is elavil. The narcotics kill some of the hammer-in-the-skull pain after it starts, but the elavil seems to prevent lots of them. A strange thing about mine is that they come on when I'm having the time of my life! I don't do drugs beyond my RX's, don't smoke and drink about a 6-pack a week. I do eat a chocolate bar almost every day about 10am... Is this a bad idea??? They come and go and Fioricet and Soma is what I take now when the vise begins crushing my head. I'm thinking about going to the Dr. for Fioricet #3 (the ones with codeine, since I saw something on the Medscape page about a list of the RX's in order of analgesic effect, and it seems to be the next step in getting a grip on life) but I'm not totally encouraged by you guys saying you get treated like dope-fiends when you plead for something to make the torture stop. I don't see things anymore, but light, noise and fumes of gas/perfume/smoke make me crazy sometimes! I have a feeling like someone drove a sword into my eye and it came out behind my ear. My head pounds so hard sometimes that I really expect blood to gush out of my scalp, but then you all already know about all this... I guess my advice is to aviod the stuff that makes it hurt, find an understanding Dr. to get the right RX's, and KILL STRESS IN YOUR LIFE! I'VE FOUND THAT I DON'T HAVE TO DO EVERYTHING! If I take time to relax, lie down, whatever, it helps. Even if you enjoy doing something, you may want to cool it until you can do it without the headaches. I just can't get over how I could feel so bad when I'm having such fun... LOVE AND PEACE FROM THE BEACH! Robert

---Robert <>
roanoke island, nc USA -

After being diagnosed with a cryptic arteriovenous malformation in the brain stem area two years ago, migraines (which I've had since childhood) increased from 1 every one or two months to about 12 per month. Before the AVM, since the headaches were relatively infrrequent, I took aspirin and went to bed. I would also get occular migraines at times that did not turn into full blown h/a, only the "aura". For the last two years I've been taking Imitrex with 99% success and no side effects. However, about two months ago, I developed vertigo. After tests ruled out any inner-ear problems, my nearulogist concluded that it's a migraine-related phenomenon and has put me on Neurontin (3 x 400 mg per day) I still have the vertigo and have experienced mood swings, ("emotional lability" is listed as a side-effect), irritibility and drowsiness. Anyone else had experience with vertigo and/or neurontin? Anyone else had a cryptic AVM? (I get the sense that mine was pretty low-level. The only symptom was 6 months of double vision, due to pressure on nerve that controlled eye-movement). I join the the rest of you in feelings of gratitude for this site, though I was not able to find any "home" page that gives its history. To whomever is responsible, many thanks!

---Corey <>

What a fantastic discovery. I don't feel alone anymore! Maureen from Canada, please contact me about your migraines during pregnancy. I'm having the same problem.

---Jennifer Casper <>
Gulfport, MS USA -

To Marie who emailed me on 03/27/98 AM Don't Give UP!! Remember we Migrainers have our up and down cycles and when we are down it does all seem so hopeless so hang in there and remember you are not alone !!! Janet

---Janet <>
Cottonwood, Az. USA -

I'm so glad I found this page...I'm a 40 years old male originally from south-america (so forgive me my grammar). I've been the healthiest person in the world, up until 47 days ago. Suddenly one day I started to feel this pressure in my head and ringing in my ears, at the beginning I neglected to follow doctor's instruccions (tests, analysis, etc), but then I ended up in ER, now I've been through ct-scan, lumber-punction, blood test and the whole nine yards, doctor said it was high blood pressure and gave me TENORETIC (atenolol), you know what...blood pressure went down.....but simptons stayed there. The only thing that I do not understand is that ...I can not actually define this pressure in my head as always there...but is not pain. Anybody out there who can relate to this? Bless you all..

---Olger <>
Calgary, AB CANADA -

Like Sharon in Eagle River, Wisconsin, I too started having migraines & pains at the back of my head & neck after brain/head injuries. Along with them I get sensitivity to light, sensitive hearing that can sometimes get extremely painful to my ears (it feels like a knife is stabbing them), waves of nausea (without throwing up, so far), ringing in my ears, & I used to get missing patches in my vision. Fortunately, these aren't debilitating. I can still manage to work 15-30 hours per week & lead a relatively normal life. I, too, find that sleeping relieves alot of these symptoms. A doctor recommended that I take 1 baby aspirin every morning, & that works relatively okay. At least it makes the missing patches in my vision go away.

---Faith Shives <>
Walled Lake, MI USA -