Case Histories - October 1996 (1/5)

i am so glad i found you! i also suffer from horrible migraines that last usually three full days!!! i've been having them for quite some time now and i now have been able to somewhat control them. i used to get them twice a week but now i've controlled them with inderal, exercise and proper eating but i still get one or two a month usually around my period.

i hope you guys have some help for me out there!!!! i don't use any aspirin or anything 'cause they don't work so i usually take the !@#$%^&*()_+ pain!!! FOR THREE DAYS!!!

hope to hear from you soon,

---j jax00@ix.netcom.com

Ronda, your column is a lifesaver. I have had common migraines for thirty years. Get worse as I get older. Thought menopause would stop them. No way. Took all the typical medications with no real relief. Now I use Imitrex tablets (hate the injection) with firoinol. Up to 100 fiorinal per month. This is not good. I moved and also got new coverage. I am using a new doctor who is telling me that I am addicted. How can that be addicted if I can go without it for a day or two, and if I am lucky, even three days, if I do not have a headache??? I know my prior doctor was quite liberal and suggested I take something immediately before the headache sets in. I went from 30 to 50 to 100 per month. I lost a career which was very lucrative and worked very hard to develop, and now I am a computer operator and do telephone service. It is torture to work some days, but I never let my headaches allow me to miss a day of work or else I would be in trouble psychologically. I have daily headaches most of the time, but am being told they are mostly rebound. So....what do you do???? If anyone knows, maybe some meds out there, I would appreciate your help. Somehow, although I like my new doctor and he does "listen" I can tell he does not quite "get it."

However, I know I am taking too may fiorinol and I am trying to cut down. Believe it or not, other than the above, I am in good physical condition. Very active when I fell good, and have kept myself in good shape. Just want to be happy. HELP????

---BADO89@aol.com

Migraine Headaches run in both sides of my family, my grandmother on my dad's side had headaches until she went through menopause. My mother, brother, sister and myself all suffer with headaches. I am currently taking imitrex and tylenon 3 for pain relief. I have had side effects from the imitrex and would like to know if anyone else has had the same symptoms. When I get a migraine I'll take an imitrex and the pain will usually go away, however when I wake up the next morning the headache will be back, this may go on for 3 or 4 days. When I take the medication I often feel disoriented, a 'fuzzy' brain (eg. like I have had a couple of drinks and everything is out of focus.) My eyes feel puffy and the area under my eyes is tender. I often wonder if this medication also effects your short term memory, often simple things that I do everyday take a minute to register. Please tell me I'm not crazy.

---Deb dgraves@city.nanaimo.bc.ca

Hi Ronda. Wonderful page and a nice place to visit when you feel so alone. I have suffered migraines all my life (I am 39 now). When I was 2 years old I was in a bad car accident and fractured my skull in seven places. I guess that was the starting point. I too have been treated like a "drugie" through the years. I am a Judicial Law Clerk and raise and train horses. I live on a large ranch in Oregon. I tell you this so you don't think I am living on the streets, stealing for drugs since that is how I am treated half the time my doctors and nurses.

I have tried most medications. The ones that have worked the best for me are Fiorinal #3 (pretty strong stuff), Ultram (new stuff) and a demerol shot as last resort. The imitrex makes me feel like I am going to explode and sometimes works, sometimes doesn't. It is very difficult for me to have a doctor or nurse, who do not personnaly themselves suffer from migraines, talk to me in a demeaning tone about, "now what you need to do is quit depending on those pills...what you need to do is find a hobby...what you need to do is try over the counter tylenol...get the extra strength!" Oh please I think as they ramble on. I try not to go to the doctor or emergency room because the whole fiasco of telling the doctor what is wrong, listening to the lecture and then waiting for them to decide what they are and are not going to do is almost worse than the headache! I understand the professions concern about addiction, but when you are suffering you just can't worry about that, you just want it to stop! I have a great family who understands and a husband who sticks up for me. Recently I was given the drug ULTRAM then abruptly the doctor decided I shouldn't take it because it may cause weightloss (I am little). I couldn't believe it! Here was something that was finally helping me and instead of taking it away because it was bad for me, he thought maybe it would cause me to lose weight, etc. Well, I set up a conference call with him, my main doctor. I did this when I wasn't suffering from a headache so I could speak with them without being sick.

We discussed everything and I told them how I felt. It really helped us all understand my migraine illness and hopefully has made them more sensitive to those who truly DO suffer. Who knows....but hang in there everyone.....

---Susie flennike@empnet.com

I have suffered from "classic migraine syndrome" since I was about 12, 20 years ago. I am fortunate that my attacks are not frequent, rarely occurring more that about once per year. My headaches usually last four to six hours and I vomit about every half hour for the first two to three hours. I have had a number of different pain relievers prescribed, but because my migraines are so infrequent I rarely have any medications with me when the attacks come, and I seem to have a lot of trouble getting urgent care facility doctors to take me seriously when the attacks do come. Those are my gripes - but I also have a suggestion I would like to offer:

I have heard that increased physical activity can aggrivate the condition. However, I believe that consistent regular physical activity can help avoid migraines. About six years ago I started an exercise program - nothing too intense, just aerobics and light weight training three or four times a week, no more than a half hour to an hour each time - and I noticed that the migraines stopped coming. Completely. I thought maybe I was through with them. Then about sixteen months ago I had a baby. I kept up my exercise program through my pregnancy, but after my daughter was born I suddenly had a lot less time on my hands and I stopped exercising. Suddenly the migraines are back. Two in the last six weeks in fact. I'm working now to get back into an exercise routine and I'm hopeful that I will again be migraine free. I hope that someone else will find this helpful.

---Casademas@aol.com

I just finished reading several case histories on migraines. My son, who is 12, is at Walter Reed Hospital in Washington D.C. with his father. He started have nausea and headaches in February of this year. After weeks of tests, CAT scans of head and stomach, MRI, various trials on medications we were just lost as to what could be his problem. After all tests came back normal, they started to think this was psycological. This really angered me and my husband since we knew our son better than anyone. Jimmy (my son) was hospitalized in Denver Childrens with more tests coming back negative. He was seen be a GI specialist and Neurologist. Jimmy not only was having severe headaches but was vomiting from 4 to 11 times a day. He was out of school and just could not function properly for months. I requested a second opinion from another neurologist. The first test they ran was an EEG. They told me that Jimmy's EEG came back positive and was diagnoised with a rare form of epilepsy. BENIGN BILATERAL OCCIPITAL EPILEPSY. He was put on Depakote and told it could take months to work. Well we went through months of waiting (the medicine was started on 4/1/96). Finally on July 3, Jimmy had his first day of not vomiting. That continued until the middle of September. When the headaches and vomiting returned, we immediately had his Depakote level checked. It was very low. His neurologist increased his medication over the course of two weeks (meantime he is still our of school).

The headaches had worsened (24 hours of dull aches and several times a day of severe sharp pains) and the vomiting continued 2-4 times a day. Jimmy's pediatrician spoke with another neurologist at Walter Reed Hospital (the best military hospital in the world) and he wanted to see Jimmy. So off my husband and son went. Now they are leading more towards Migraines. They are going to do another EEG and compare it with the original EEG done in April.

My son has been seeing a bio-feedback doctor on a weekly basis and this does help him. He thinks the world of this Doctor. I suffer from Migraines as well and thought that it was not a continuous problem. That it came and went. My son has no refief from the headaches and vomiting is a daily thing.

They have started him on a beta-blocker for the headaches and have now started him on Zofran for the vomiting.

I would love to hear from anyone who's child or themselves have similar symptons. Having this happen to your child makes you feel so defenseless. He is a brilliant child who has exceeded in school and sports. He is a well rounded child.

---Cleooko@aol.com

This is my third attempt to write this case history tonight. It keeps disappearing mid-thought (hope this is not too repetitive!) I'm not sure where messages go when they disappear, but . . . After having migraines for the last thirty two or more years, I'm definitely an "expert" about some things having to do with migraines. I've taken prescription drugs for the fifteen years or so, and have seen countless doctors and specialists. I have taken many abortive medications in all strengths and forms, and have tried beta blockers, callcium blockers, anti - seizure medication, and antidepressants as preventatives. I have had some short term success with some things, no success with others (like the beta and channel blockers), but no long term success. Imitrex was a wonderful addition to the drugs available for this condition, but I now suffer from very high blood pressure, and so am unable to use it safely. At this time, the only pain relief comes fron Stadol NS. I've heard that it is not good to use, but when there is nothing else that works, what can you do?

At this time in my life, I have at least one severe migraine per day. Some last only a few hours, others last all day (and then some). The pain at times is so overwhelming, I don't know what to do with myself. I have tried self hypnosis and biofeedback without success. Exercise only makes the pounding worse. My senses are all out of whack during an attack; I'm bothered by lights, sounds, and smells. Flashing lights (strobe type effect) can set off an attack any time. Even the beautiful sunlight filtering through the leaves of the trees as you ride along in the car can trigger an attack. I have identified certain foods which may act as a trigger, such as too much orange juice, raw onions, or excessive chocolate. Strong perfumes or other odors also have triggered episodes. The local hospital treats migraine sufferers as nuisancesand use demerol for the pain. Demoral does nothing to stop the pain - it only numbs the rest of you for awhile. Personally, I am hyper for days after such injections. A hospital about an hour from here will use toradol and decadron, usually more effective, but spending hours in an emergency room on a regular basis is no way to live.

I have been hospitalized four different times to brak particulary severe cycles of migraines. I used to go to the New England Center for Headache Treatment in Connecticut and had some success there. However, the distance is now too great, my insurance will not pay even a portion of their charges, and the doctor I saw egularly is no longer there. I have been considering contacting Montefiore Hospital in NYC or a headace center in the Philadelphia area for help. Is anyone familiar with either place? I am desparate for help.

In addition to the migraines, I suffer from a connective tissue disease and chronic fatigue syndrom. With all the physical problems, I have a problem with depression as well. Some days are very difficult to face, knowing that for most of the day, I will probably be in pain. My family has been wonderful and very supportive, but I'm tired of my physical state controlling our lives (no pun intended!). Please write if you are familiar with either of the two headache centers I mentioned or if you have some suggestions for something I haven't tried. I look forward to connecting with others who understand the pain that defies description. My e-mail address is GGIB2757@WARWICK.NET.

PS My name is Bev Giblin and I teach first grade.