Case Histories - March 1997 (2/5)

My personal history is around here somewhere. I know that because I still get letters from people who have problems similar to mine. In short, I am a 50 year old woman, post-menopausal (so much for "they'll go away after menopause!") with chronic daily migraine, which is not not not caused by taking too many analgesics. My neurologist and I argued about this for months last year and I finally agreed to a three day stay in the hospital for sudden withdrawal from vicodin and DHE treatment. It was lovely, but did nothing to improve my migraines. We started me on Sansert again because it had always worked before and we had previously stopped using it only because we were afraid of the side-effects and I was getting too many break-through headaches. Finally, in October 1996 I saw Dr Raskin at UC Med Center in San Francisco. By that time the migraines were actually under moderate control on a regimen of Sansert, Inderol (propranolol), Elavil (amitryptalene), and Advil (ibuprofen). Dr Raskin told me to change from taking estrogen by mouth to the patch, which did help very subtly and he suggested I increase my dosage of Sansert from 3 per day to 4 per day. My own neurologist was shocked at this suggestion, but Dr Raskin is the head honcho of migraine on the west coast, so we went along with the plan and my headaches were gone!!!

Just my luck, I thought, when almost immediately my arms started to hurt. They were so weak that the situation was actually affecting my ability to work (I am a sign language interpreter). First I thought it might be from the Inderol because I already have limits on how far I can walk due to Inderol. Inderol puts like a governor on my heart, so that when the large muscles in my legs scream for more oxygen, my heart simply can't speed up to deliver more. So naturally I thought that might be what was wrong with my arms. I also came down with Carpel Tunnel Syndrome in my left hand (I am right-handed) at about this same time. I'll skip all the other things we thought might be wrong with my arms and skip directly to the angiogram, which revealed that the only thing wrong with me was "itsy-bitsy, teeny-weeny arteries" to my arms. While the vascular surgeon was trying to figure out what would cause this, I called my neurologist and told him what was going on. We agreed I needed to go off Sansert as quickly as possible. And, like magic, my arm function was restored!

It seems that I had come down with ergotism, not only from Sansert (an ergot compound), but also from all those DHE shots last summer. DHE is dihydroergotamine, another ergot compound. Ergot is a rye mold which has been known to help migraine sufferers since the Middle Ages; it's also been known to cause ergotism that long. Ergotism usually causes a kind of palsy, but it can cause problems with shrunken arteries, which is what happened to me. In fact, in the course of trying to figure this whole thing out, several doctors had suggested that it was the result of my smoking for many years. I kept responding that if nicotine were a really effective vasoconstrictor, I wouldn't be having migraines, would I? They thought I was in denial because I am unable to stop smoking. Maybe so, but my problem was, in fact, not caused by smoking or drinking coffee (caffeine being a vasoconstrictor), but by taking large quanitites of ergot compounds in a futile hope to control my migraines.

So, it wasn't a case of "just my luck" after all. There was a real reason why my headaches came under control at the exact same time that my arms started getting painful and weak.

The moral to the story is: Sansert is a fabulous drug for control of migraine, but it has some serious side effects. If you take Sansert, watch for blood flow problems in the various parts of your body. Lesson #2: when a new medical problem comes up, first go back and re-read the side effects for the drugs you are already on. If I had not done that, I would now be on a new set of drugs to help the blood flow into my arms easier, whereas the actual cure was to stop taking the drug which was causing the problem.

I now have my headache back and my neurologist has agreed with me that sometimes narcotics are less dangerous than the alternatives and will allow me to decide what "too much" is.

---Nancy Flack nanflack@metro.net

Hi Again,

I was wondering how many other people out there who are migraine sufferers are noticing that their children are also sufferers. I have had migraines for 23 years, I am 35, and both my 13 year old son and 8 year old daughter have migraines. My son has had an occasional migraine (2 or 3) a year for about 3 years. My daughter on the other hand, since the age of 7, has 2 or 3 a month, more often if her blood sugar drops (not eating regularly). Both are lactose intolerant and have a sensitivity to chemicals.

I am not too surprised that they inherited migraines, but the young age does surprise me. It appears from what their doctor has said, that childhood migraines are being diagnosed more often. Are there any studies being done in the U.S., preferably in the San Francisco Bay Area to study this possible trend? I saw on your web page a study in Finland which seems to suggest childhood stress as a factor. What are we doing here in the U.S. to address this issue?

Does anybody have any good ideas or strategies to help? We are currently using Midrin for my daughter. It appears to be effective about 75% of the time. Rest, icepacks and massage help in conjunction with the Midrin. Obviously, I make sure she eats regularly to cut down on unneccessary headaches. I don't want to start her at the age of eight on a round of drug strategies, as this would probably cause reaction problems at this age. If anybody has any suggestions, please let me know. Thanks much and good luck to all fellow sufferers.

---Alli@harrisonpromo.com

Ronda....Your web site has alternately blown me away and depressed me. Its a relief to know that what I have experienced is so common, and depressing to see how little long term relief has been found. Here's my story.... I had the first migraine I can remenber when I was in kindergarden. I ended up in the nurse's room with the lights off because the lights hurt so very badly, as did any noise. I remember laying there in the dark, nauseated, crying, terrified, not knowing what was wrong and why I hurt so badly. I was five. The second one that I remember was when I was eight or nine. I had been laying in bed, in pain. I remember getting up and feeling better and looking outside. A thunderstorm was moving in (this was in Michigan), and as the front came through and the storm broke, so did the migraine. I didn't know it at the time, but this was my first clue that weather could have anything to do with it.

I'm 46 now, so I've been having migraines for over 40 years. The best thing that can be said about them is that they suck. Period. I too have had so many of the common experinces I've read about here; trips to the ER, more different meds than I can count, doctors that ran the range from wonderful, compassionate healers to incredible. insensitive jerks. At this point in my life I won't even tolerate a doctor who insults my intelligence, belittles me or the pain I feel, or who isn't going to try to help me. It's really hard to feel strong when you're going to someone for help and they kick you when you're down. I think that this is an important part of this whole miserable experience. Having the migraine is bad enough, DO NOT put up with someone, doctor, friend, spouse, whatever, who puts you down or doesn't acknowledge what you're going through. To me the best thing about Imitrex is that now the medical field is looking at migraine as a biological, chemical, brain disorder, NOT the whining of a disfunctional, hysterical, psycho hypochondriac with low pain tolerence. Anyone who has had migraines for several decades knows how the medical community has changed its tune as to the causes and cures for this and how easy it is to blame the patient when they don't get well, (If I can't heal you, it must be your fault). I've tried a lot, read everthing I could find, taken all kinds of stuff and tried to connect the dots in my own life and medical history and this is what I've figured out so far:

Its important to find a health care professional who is sympathetic and willing to work with you. Screen by phone if possible, save time and money. Do this when you're not in the middle of an attack. You want to be focused and sharp while finding a doctor so that you can feel confident seeing them when you are hurting.

As I've gotten older my migraines have changed, gotten worse. Mine seem to be triggered by my monthly cycle mostly, also by sinus problems...a weather related sinus headache will set me off easily..also by cigarette smoke, some perfumes, red wine, chocolate, stuff like that. If I am in a pre-migraine state I try to avoid rapid flickering lights - movies, tv, etc. Even driving on a tree lined road where light and shadow alternate quickly will send me into a full-blown pain fest.

I'm on a hormone suppressent drug for endometriosis (Synarel), and I have noticed that while on this drug and period free, my migraines decrease dramatically.

I have been diagnosed with Fibromyalgia (a chronic pain disorder) and Depression as well as Migraines. Migraines are very common in people with Fibromyalgia. Depression is VERY common in anyone with a chronic, life-changing painful condition. You are not depressed because you are a weak whiner, you're depressed because you hurt.

All three of these conditions have in common an imbalance in the body's Seratonin levels. Seratonin is a chemical that affects mood, pain tolerence, healing, sleep, immune system function. It also works as a neurotransmitter, helping send messages between body and brain and vice-versa. Imitrex is effective because it works on the Seratonin levels. I believe that the cascade effect during the onset of an attack, the distorted visions,etc., are part of the effect of misfiring of neurotransmitters, similar to the bioelectrical misfirings that trigger epilepsy attacks. Mostly because it feels so odd at the onset of the attack, like suddenly everything is sensory overload, sights, sounds, smells. What to do????? Beats me, I've tried the same things you all seem to have tried. I've learned that this is a life altering affliction, deal with it. Shop around until you find the right meds and the right health care pro. Never give up. Adapt your life where necessary to have the best quality of life you can. Simplify and reduce stress. Find the combination of techniques that works best for you, be prepared to adapt as necessary.

---Ruth Lopez alopez@netwide.net

Ronda, thanks for this chance to find out we are not alone! I'm a 42 yr old Migraineur (sounds like someone at a convention wearing a fez yippeee) I've been through the same things so many people have written about. I'm fortunate enough to have insurance right now because Imitrex and Lorcet have them under control for once. I still get a killer about every other day, but not each and every one is a 4 day marathon now. The bad news is that I've just moved to the Tacoma - Seattle area and I need to find a doctor NOW! You wouldn't believe some of the things I've been told.... "go home and put cold and hot compresses on, it's better than medication" "Elavil will work for you even if it didn't in the past, and it WON't make you gain weight" "I'm the doctor here, and no one needs narcotics for a headache".

I would really appreciate it if anyone in this area who has a good doctor would e-mail with his or her name, and/or to share support.

---ML prudez19@mail.idt.net

Ronda,

I've already entered a case history back in January, but I have a question that I hope some others can answer for me. Has anyone ever tried DESIPRAMINE? My doctor put me on it yesterday in order to try to prevent Migraines and I'm just curious if anyone experienced any relief or side effects. I DONT want to gain weight on this medication, and I don't want to start acting weird. Any input would be appreciated.

Thanks,

---Jodi jnelson@grossmont.k12.ca.us

p.s. I really appreciate your page. I've made some good E-mail friends through it (and weeded out some that wanted to sell me their "remedies").

***I don't want to hear from people selling products or promoting cures.***

Dear fellow sufferers. I am desperate and on the verge of I dont know what. My migraines have become unbearble and are thretatening my job and my amriage. My GP and Neurologiist will give me nothing stronger than Tylenol#3 and Stadol.

Please is there anyone in the Lower Mainland area of British Columbia, Canada, who knows of a compassionate Doctor who will give me something to end my misery, please email me at katie@uniserve.com

Please anyone do what you can to get me something to rid me of this life ending pain. Ibeg for your help. Please help me Please

Hi Ronda:

I first was diagnosed with migraines when I was about 22, but found out from the neurologist that what I had previously called sinus headaches were probably migraines. I had had these headaches since I was about 11. In all my years of migraine suffering, the best thing that ever happened to me was when I referred to that neurologist. He was great. When he retired, his partner took over my care and he was even more wonderful.

Each time I visit him, he spends at least 45 minutes with me. He listens, educates me, discusses my options... etc. I truly feel involved in my healthcare. This is not to say that my years of migraines have been easy. It takes ongoing treatment and experimentation. Since I've been seeing the neurologist, I've tried cafergots (only made me vomit--did nothing for the pain), Midrin, Inderal LA (worked for nearly 8 years), Depakote, Amitryptiline, and now Paxil. I've had all of the tests others have mentioned and I've been on Fiorinal with Codeine, large Advil doses, Imitrex shots, and now Imitrex pills.

At the worst, I would get migraines nearly every day with frequent vomiting. I don't get an aura per se, but my nose usually gets very cold before I get a migraine (does this happen to anyone else?). The Paxil is working pretty well now, but it didn't seem to help my peri-menstrual migraines. Just this last month, my doctor started me on Alleve twice a day peri-menstrually. So far, it's worked great through one cycle. I haven't had a migraine in about five weeks now. If I do get a migraine I take 50 mg Imitrex if it's not peri-menstrual and 100 mg Imitrex if it is.

The best advice I can give is for migraine sufferers to search for a neurologist who gives you the care you need. I know a lot of people with migraines (my sister included) who see their family doctor and they always seem to be about three steps behind the cutting edge of migraine treatment. Only a year ago, my sister finally talked her doctor into trying her on Inderal. The dose she is on is so low (40 mg) it isn't doing much.

It's great to hear other's stories.

---Donna S. roger1@home.com