Case Histories - July 1996 (5/5)

First, thanks for taking the time to set up this site, it lends credence to the fact that migraine people are not insane. I am a 21 year old student and have had migraines since I was 16. At first they were misdiagnosed as sinus problems, but when I was about 18 I found a great Neurologist who has helped me out quite a bit.

I started out with an occasional migraine that could be stopped with a midrin or cafergot and maybe a vicodin or fiornal. When I started college at the UW, they became worse fast. My headaches are classic with the aura (often blindess in one eye), vomitting, complete numbness in one arm, diziness and of course pounding severe pain. My family doctor sent me to my current neurologist who is the best in the Seattle area. I have been to doctors who do not "believe in pain medication," and have become so frustrated that I told them "pain medication is not like the Easter Bunny, you don't choose to believe in it, it just is." This spring, my headaches became much worse and my doctor thought I had a tumor, (MRI's came out all clear). I have also been tested for optical aneurisms and such and this can be scary. I am willing to bet many of the case studies have experienced the same thing.

I now have a daily headache and end up in the emergency room for demoral shots (thank God almighty for Demoral and Phenergen shots) about once every six weeks. This provides excellent relief, but will put you to sleep for a good 6 hours. If you are not dressed well or are young, you probably will be asked if you are a junkie, etc. A formula I have found that works to get what I need is just to be honest, straight forward, and unyielding. Also tell the ER doctor that you are willing to try any other medication available. I have tried amitriptiline, depakote, cafergot, and several other preventative medications including the Imitrex shot, which I had a very bad reaction to including a very high blood pressure and increased pain. I have found that the Imitrex pills can help about 75% of my headaches when used in conjunction with a pain killer. I prefer Imitrex pills because they do not make me dopey but still make my heart pound.

I am currently taking doxipen (similar to amitryptiline) every day, occasional vicodin, and occasional percocet (which works quite well) I also take Stadol NS for the really bad headaches, and my doctor told me it is all right to water it down with some water and a few grains of salt (plain water doesn't work well). One of the histories noted that she felt compelled to take more Stadol NS. I have the same situation and also experience rebound headaches if I take it more than one time a day.

I have tried avoiding triggers and have gone off of the birth control pill, but still am getting daily headaches. I have also tried biofeedback. The only other treatments my doctor can suggest are the DHE 45. I wanted to know if anyone has been through DHE 45 and could provide more details. I also wanted to know more about lydocaine therapy.

I am going to law school next year and am frustrated because I do not know how I can possibly attend class every day. My employers are not sympathetic and take the "Oh, take an Advil," approach to pain. Professors are also not sympathetic. I usually do not tell them it is a migraine, but rather an ear infection or something more tangible so they can understand. I do not enjoy lying, but there are not many sympathetic ears. I have found that most people are not sympathetic and so I simply don't tell them. One major irritation of mine is when people say they have a migraine and it is just a piddly little headache and then think they understand the pain I feel. My fiancee is wonderful and the most understanding person about my headaches. My sister also has them and is very supportive. It frustrates my family and loved ones that there is little they can do. If any one knows of any new studies in the state of Washington, please keep me posted. Thanks again Ronda for putting this forum together.

If any one has more information please feel free to contact me at kitypooh@u.washington.edu

Thank you so much Ronda for your homepage. I was talking to my doctor the other day about my migraines, wondering if he knew if it was possible to collect disability because of chronic migraines - he kind of chuckled, and said he didn't think so!!! He told me that it is quite unusual to not be able to at least modify the migraines, maybe not get rid of them altogether, but at least reduce the number. After reading your page and realizing that I am not the only one that is unable to reduce/prevent migraines, I really feel so much better. Not quite so freakish anymore!

I really would like to know if there is anyone out there collecting disability because of migraines. I am working now, but finding it harder and harder to hold down my full-time job. My boss is very understanding - he lets me make up hours on weekends, evenings, etc. It's just so difficult sometimes, I'm not sure how much longer I can take it. I find myself unable to enjoy life because when I don't have a migraine and feeling pretty darned good, I end up having to spend all my time at work to make up hours!!! I've heard that you have to not be working for 6 months before getting disability payments. Without my income, my husband and I cannot survive - not even for 6 months. What do people do when faced with this situation?? PLEASE HELP!

I have tryed everything out there for my migraines. Imitrex injections work sometimes, but the side effects are awful. Occasionally I can beat a small migraine with my Fioricet, but not very often. I have absolutely no pattern to my migraines, except I know for sure that I will get lots before, during, and after my period. All others are "whenever the feel like it". I know this gets frustrating for my husband, but he is so wonderful about it. He would do anything to get me out of pain.

Any help, advice, etc. would be GREATLY appreciated. Thanks for listening to me ramble, I finally can communicate with people that truly do understand what I go through.

---Bridget O'Brate bobrate@ksu.ksu.edu

First, let me thank you for the marvelous site!!!!! I found it this am and intend to read every single word of it, having had a 15 hour headache yesterday!

Just thought I would tell you that my migraines are virtually always traceable to excessive neck movement. I have had all the usual tests, MRI, CIT, etcetcetc and nothing turns up. But an observant MD asked me if my neck ever bothers me. I said yes, and a neck x-ray showed arthritus so I began to think about what I did the day/night before a migraine hits and lo and behold! I can always trace it to the neck thing. For example, on Sunday I was on a car trip for 4 hours. I was a passenger in the front seat which involved my turning my head to talk to the driver and a back seat passenger. I usually try to avoid/minimize these situations but could not for various reasons this time. I never gave it a thought until the headache hit with a vengence. Invariably I can trace a headache to a similar situation and I VERY RARELY ever get one without having been in such a situation the day/evening before. Now I am NOT talking about normal day-to-day living using one's neck. I am talking about excessive use. Another example is being at a meeting a work, or out to dinner: if I watch where I sit so that I don't have to do a lot of turning/twisting etc., then I am just fine. I really think this is what causes my problem because I have looked into everything else - foods, chemicals, etcetc and there is no consistency anywhere.

Hope this helps someone! If you have a similar story, please let me know!!!! ---Gayle ghardy@acsu.buffalo.edu