Case Histories - October 1997 (3/5)

Rhonda,

I have been checking your page from time to time and I am offering the following advice for people who get migraines:

I have had migraines for 12 years and have been to many doctors. I also have about 20 books on migraine, including medical textbooks. I too have a family history of migraine.

HERE IS THE BEST ADVICE I CAN GIVE A MIGRAINEUR:

1. See a Neurologist who gets migraines himself/herself. They are the only people who really understand and to whom you can relate.

2. Find a Headache Clinic recognized by the National Headache Foundation (in Chicago, I think they have a web page.)

3. Go to a TEACHING HOSPITAL, the bigger the better. They usually have neurologists who specialize in migraine or pain management and who keep up with the medical literature on migraine.

4. Buy the book "100 Best Doctors in America" or its regional versions and look for a neurologist who specializes in migraine or pain management.

5. Be sure to have a brain scan (CT-Scan or MRI) to rule out anything growing in your brain that shouldn't be there.

6. Go to a good bookstore (or check Amazon.com or similar book seller on the Internet) and get a couple of books printed after 1995 on Migraine to help you better understand the current thinking in the medical community. THE CURRENT thinking about migraines is that they are caused by an imbalance of the brain chemical serotonin. This imbalance may be triggered by any number of things from stress to foods to smells and allergies. The trigger sets off the imbalance and you get a "brain storm" as one of my Doc's says that results in nausea, visual disturbances, extreme pain, sensitivity to light and sounds, inability to eat, and all sorts of things.

7. Regular doctors know and understand little about migraine. They still perscribe stuff given 20 years ago. Since 1993 several new drugs and treatments are out. These include:

a) Migraine mitigators - lessen the frequency and intensity of the headache. They include Serotonin Re-uptake Inhibitors (SSRI's) such as Zoloft and Paxil, and calcium channel blockers such as Verapamil. However, the doseage of these drugs must be right for YOU. You have to be taking enough for them to work.

b) Migraine relief - Imitrex (sumitriptan) is available by self-injection at 6 mg and by mouth at 25 or 50 mg. That is the best one now available but another ". . . .triptan" drug has been tested on 10,000 people in the U.S. and I hear it works great with far less side affects than Imitrex. It is supposed to be out by March, 1998.

Also DHE in nasal spray is available in some places and works if you take it at first onset. It's name is dihydroergotomine and is a far different drug than other ergotomine compounds that are 20-year-old drugs. Trouble is, you get it either by injection or by nasal spray and it has to be kept refrigerated.

As for pain killers, Stadol Nasal Spray, a synthetic opiad receptor pain blocker is the best, but it is so easy to overdose (and stop breathing) that few doctors will perscribe it. The next best is Hydrocodone in tablet form, usually indicated as 5/500 strength which is 5 mg hydrocodone and 500 mg Tylenol.

All the above are perscription meds, so you have to see a Doc. But try to find a Doc who gets migraines!

I have spent many hours reading and searching for solutions and relief and I can honestly say you MUST FIND THE RIGHT DOC!

I HAVE had two neurologists who got migraines themselves and they were the best. Trouble is, in the first case I moved two states away and then in the second case, my doc moved to Virginia.

Good luck.

If you get migraines you have to keep on top of new medicines and new developments in the field.

Take the steps above and do them in logical order.

Pete J. PJorgensen@quest-net.com

Rhonda,

Finding your site has been a godsend for me. I hear people say all of the time that they are getting a migrane, when they really don't know what one is. It makes me sick.

I am 25 and have been suffering from migranes since I was 4. Most people are very unsympathetic because they don't really know what a migrane is like. Even my husband of 1 year had no real understanding of what I was going through until we started living together 4 years ago. For the 4 years before this, I would hear take some aspirin. Now that he understands the actual pain that I am going through (I don't think he could count the number of times I have asked him to just cut my head off), I get much more help through these.

I don't know of a miracle cure but one thing I do believe is that no matter what pill or shot you take, eventually it will stop working. I have taken so much aspirin, tylenol, motrin, advil, aleeve, and ibuprofin, that nothing works for any type of pain now. I also have arthritis in my hands, so I'm doomed to suffer from that as well. I have exhausted codine, percaset, percadan, darvoset, and several other narcotic medications. Now if I do take any of these, the pain dulls for about 1 hour and then comes back like an angry tiger. I've used blood thinners, vaso-dialators, allergy medication, sinus medication, and most recently Imitrex. This worked for a while but it's starting to lose it's effectivness as well.

I'm getting ready to start using Feverfew, I've heard good things about it but I don't know what I'll do when that starts to wear off.

I do know that when I begin to get a headache, if I can get someone, usually my husband, to squeeze the pressure points in my thumbs, I can fall asleep before the pain sets in. As well, I've gotten used to putting wet washcloths in the microwave for 5+ minutes until they are so hot I can't touch them and that will also help me go to sleep.

I am at the point that I don't know what to do. I know all too well about the nausea and vomiting, the craving for silence, the attempts to quell the pain until death seems like the best alternative.

In some ways I'm lucky. I go through periods of time where I won't have a headache for several months but when they start to return, I usually have one every few days. I have had to leave work, beg people to take my son, force my husband to stay home. I know it's pretty bad when my 3 year old knows that when Mommy has a headache, he can't make any noise and it's best that he just leaves me alone. I don't want him to grow up under these circumstances.

I, unfortunately, have no specific triggers. These things come on when they want to usually with very little warning. I see the spots or feel dizzy and then I feel like someone has slammed my head between two semi trucks.

I am definately one of the more severe migrane suffers but it helps just to know that there are actually people (other than my mother), who know what I'm going through and have suffered as I have.

Also, any ideas or suggestions would be greatly appreciated. I'll try almost anything to stop the suffering. I honestly wish the medical community was trying to do more about these things. There has to be some common thread between migranes and something that can be done about it. Until then, all we can do is keep trying different treatments, try not to feel guilty, and realize that only those who suffer or suffer with us, can ever really understand the full impact that these things have on our lives.

---Kelsey Vetter kjayvet@gte.net

Dear Ronda,

I am a 35 year old American male living and working in Thailand. I have been getting migraines since I was a child. I hate going to doctors in America who tell me my headaches are stress related, and want to put me on something like Prozac. Midrin worked for me, but Inderal was a disaster leaving me too lethargic to do anything. If I requested Tylenol with Codeine in the USA, I get treated llike a drug addict.

I have known for about 10 years that MSG is my primary trigger, after noticing that my most severe attacks occurred after eating at Chinese restaurants. I recently encountered the Migraines and MSG web page listed on Yahoo under migraines (sorry I don't have the address to give you ). I was suprised to find that almost all the food I thought was MSG free was full of MSG--I stopped eating all sauces, Diet Coke and Pepsi, and all yogurt products. Since I am a vegetarian this leaves my diet to basically raw fruit and vegetables, and stir fried vegetables with either tofu and/or eggs. Since cutting out all processed foods, and eating this natural diet, with nothing packaged,canned or bottled, I have had about a 90% reduction in my headaches. I have also had to give up bread and baked goods.

In Thailand I purchase my medication ove rthe counter, and don't have to deal with the degrading procedure of having an ill-informed doctor tell me that my headaxhes are caused by stress, or look at me scandalously for requesting codeine for pain relief.

I find it extremely ironic that the FDA allows food companies to pur poisons, like MSG, into our foods, but a doctor cannot prescribe a pain medication for genuine pain.

I experience zig-zag visual disturbances on occasion but they are not timed procisely with the onset of a migraine. My migraines are behind my eyes, but the pain is generally so severe that I cannot say which side thaey occur on. I have cold sweats, go pale, yawn, and have racing thoughts. Generally, I arrange myself in a sort of upright fetal position with my head sort of screwed onto the bed or wrapped in pillows. It seems that if I can find just the right position I can temporarily forestall the pain.

I am currently experimenting with Hydergine and gingko for the prophylactic effect. This chemical and herb are supposed to improve circulation in the brain. Hydergine is a so called "smart drug". Gingko is an herb and available over the counter.

What works for me is as follows: A completely natural diet, fruits and vegetables, raw or cooked. I also eat eggs and fish, so lon as I know no sauvces or MSG has been used. I must avoid MSG in all its forms. No caffeine. Vigorous exercise, at least every other day. Don't miss meals.

When I have a headache: Cafergot and Tyelnol with codeine

Current experiments: Feverfew, Hydergine and gingko as prophylactic (so far, no significant effect)

---chatree@ram1.ru.ac.th

I am 33 years old I have had migraines since 12. I have been all over for my headaches, I also suffer from daily headaches- I currently go to Stamford Headache Clinic which in the last 9 years has helped me the most. I am currently taking 500 mg of depakote a day and 50 mg of pamelor a day. I have put on close to 30 lbs. from these medications. I have tried everything! Accupuncture, TMJ Specialist, chiropractor, massage therapists, medical doctors, pain killers, and numerous medications. These medications are keeping the headaches at bay. I only have to do 2-3 injections of imitrex a month. Does anyone out there have something that worked for them that doesn't have the awful side affects such as weight gain, tired all the time etc,etc, I have 3 small children and I want to enjoy them- I have also tried homeopathic remedies such as fewerfew, niacin, chromium, also have tried taking everything out of my diet and slowly adding things back.

Thanks,

---Tracy TMBogner@aol.com

Hello to all on the journey ... I won't go into a lengthy case history because mine is, of course, so much like all the rest. I am 53 yrs old; started having migraines in my early 20's. During the worst phase (mid 20's to early 40's) they were several a week. Have done 'the drill' (as most of you have) with the same meds, dr's, etc. Using biofeedback, some lifestyle restructuring, relaxation techniques, I have 'managed' my condition to only an average of 2x/mo. Big improvement for me. When headaches do come, fiorinal w/codeine and/or Immitrex take care of most. When that doesn't work, it's the ER (and all the attendant 'garbage' we must endure there!!) Most times, I'd trade all the Demerol in the world just to be able to inflict my headache on the 'physician-of-the-hour' for one day!

My main reason for posting is that I've been reading through all the other postings...and want to say THANK YOU, THANK YOU, THANK YOU.. to all out there. Your experiences and support and your just 'being out there' brings more comfort than 99% of the dr's and ER's I've dealt with in my migraine history!!! Keep the faith! We are strong!!

and..again, Thank you all !!

---chium@best.com

I am 47, I have had migraines since I was in high school, about 32 years. Of course, back then I didn't know what they were. Over the years I have seen many doctors to no avail. I decided to try and get help again in 1991 when my daughter was 12 and started getting migraines. I also took her, I didn't want her to suffer like I had for so many years. I think it was a combination of good luck and perserverance that helped me. I found a neurologist who was willling to try many different medications for varying periods of time, and with persistance, finally something helped. In 1993, I began using Stadol NS. I have read all the bad things about it being addictive, and I'm very careful in using it. I have used it since 1993, and it is a great pain killer for me. In 1994, I started using Imitrex injectable. I am very lucky. Between the two drugs, I can lead a normal life. I used to spend two to three days in bed extremely sick. I would get up to go to the bathroom and throw up. I couldn't sleep. My doctor had given me percocet prior to the Stadol NS and Imitrex and it didn't work, it only made me sicker. I can wake up with a migraine now, use a shot of Imitrex, and within about an hour, I feel almost normal. I do use a lot of Imitrex, often up to sixteen shots a month, but I have very few side effects, some tightening of the jaw, sometimes prickly fingers, heat sensitivity, some tightening of the muscles in my neck. They are all very mild. I know several people who have tried Imitrex and it does not work for them. For me, it is a miracle. I never held a steady job until 1989, mainly because of the headaches. Also, I have three children, and I stayed home with them while they were little. I also spent mamy days a month sick in bed with headaches, I only wish I had had the Imitrex and Stadol NS when they were younger. I have a wonderful doctor and the nurse who works with him is excellent. They are both very compassionate and caring. I had seen many doctors over the years who were no help at all. My life has changed because of these drugs. I also know that they are very expensive, and it helps extremely that my husband has an excellent health care plan with very good prescription coverage. I also take 120 mg of Inderal twice a day and 50 mg of Nortryptilene at night. I have taken these for about two and a half years. I thought maybe they weren't that big a deal, and they have caused me to gain at least 20 pounds, probably 25, but who's counting!?! I went off of them gradually and completely for a couple months this summer, and I really did notice a difference. Imitrex and Stadol NS still worked, but not as quickly, and it took more of both to knock out the headache. Needless to say, I decided the extra pounds were going to have to stay and went back on both meds. I also don't like to exercise, so that really doesn't help with the weight, but I have decided it is an okay tradeoff. I consider myself to be very lucky. I have a good doctor and nurse, and Imitrex and Stadol NS happened to come out at an opportune time for me and I was lucky that my doctor prescribed them for me. I know how frustrating migraines can be, it is only the last four years that I have been able to cope. Sometimes I would just lay in bed awake, I could rarely sleep, in a dark room and cry, I was so frustrated. My best advice is to hang in there, if you don't like your doctor, try another one, and if you find one that you like and is sympathetic to your pain, don't be afraid to try different drugs and different combinations. That is what helped me. I know many people don't think drugs are the way to go, but I strongly disagree. As long as a person is careful and aware of what they are taking, and it helps the headache go away, I tend to think it is worth it. I have read the sheets that come with both the Imitrex and Stadol, and I continue to take them, they have changed my life. I know this is rather long, and I apologise if I have rambled. I have been reading the letters for a long time without responding, but finally decided I had something to say that might help someone. E mail me if you like. Thanks for all the great advice and support.

---celliott@wtp.com

I have been a migraine sufferer since the age of 15. Weekly incapaciting migraines were keeping me from enjoying my life as a mother, teacher or simply a living, breathing individual. I tried to "tough it out" but found that the more medication I tried, the worse I became. Finally, thanks to The New England Center for Headache in Stamford, Connecticut, I have found significant help. A strict migraine diet, biofeedback training for stress and maybe most importantly neck stretches and work with a neuromuscular therapist have helped me. I still get migraines with my menses and when the atmospheric pressure drops. I think those are just going to be a part of my life, and I hate it, but I am better and the daily headaches that were so much a part of my life are better. Oh. . I also attribute the change to 250 mg of magnesium per day, 400 Units of E, and 125 mg of B-6. The doctors in Connecticut believe that the brains of migrainers often don't or can't use magnesium correctly. . In the end...I've gotten some peace through the notion that my chemistry is just migraine prone. I hate the bouts, but thanks too to Imitrex, I rarely have a 12 hour one anymore. I think there are doctors who understand we are not simply uptight, weak individuals, in fact, as the doctors in Connecticut told me, Migrainers are often strong, determined people who have lived through a great deal of pain as well as misunderstanding.

---WHHANN@HAWKS.BPS.MONTANA.EDU