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my migraine, my HMO and me
As I’ve indicated in a previous post, I’ve had migraines for 34 years. During that time I’ve been treated by internists, family practice physicians, neurologists, chiropractors, homeopaths, acupuncturists, biofeedback therapists, and a multitude of body work practitioners employing a variety of techniques – acupressure, shiatsu, rolfing, etc. I have practiced yoga, Pilates, and an assortment of aerobic exercises promising that the oxygen intake would diminish my pain. I’ve also been injected with Botox, which, as mentioned in my last post, did not work. I’ve ingested feverfew, fish oil capsules and St. Johns Wart and because some migraine sufferers have been helped by anti-depressants, I have been prescribed Prosac, Paxil, Wellbutrin and Nardil (this is a scary one: if you eat aged cheese, pickled herring or drink red wine, your blood pressure can spike to the point of death…but hey, if the drug eliminated my migraines, it would be more than worth that kind of vigilance). I have also been given a series of drugs that are prescribed for people with seizure disorders — Verapamil (a calcium channel blocker), Topamax and Neurontin. Not only did none of the above eliminate migraines, many of them triggered terrible head pain – the most severe migraine was produced by Nardil.Another category of drugs is vasoconstrictors. Cafregot, a medication consisting of ergotamine tartrate and caffeine, has been around for a long time and, if taken early enough, can be effective in aborting a migraine. But it’s systemic, it doesn’t target only the vasculature in the brain but the whole body, and my mother, after a lifetime of use, lost the feeling in her toes. Because of this, I resisted taking it for several years but, finally, toe numbness seemed like a small price to pay for relief from unrelenting pain. So I agreed to try Cafregot suppositories. If I took them early enough, they did seem to lessen the pain but then they stopped working no matter how early in the episode I took them.
In the early ‘90s I heard that there was a new vasoconstrictor – Imitrex – that targeted the blood vessels in the brain so was expected to have fewer long term side effects than ergotamine. At the time, however, it was only available in Holland. Through a friend of a friend I made contact with a Dutch doctor who commuted between Holland and Palo Alto on a regular basis. He got the drug for me until I learned that I could get it in Canada. My husband is Canadian so we have many friends there who helped me find a doctor to prescribe it for me, which she did, until the FDA approved it in the U.S. I still inject myself with Imitrex but the shot only gives me one to two hours of relief and it’s only safe to have two shots in a 24-hour period. If you do the math, you will see that it isn’t the total solution since the average length of my migraines is three days.
A bigger gun in the vasoconstrictor arsenal: Dihydroergotamine (DHE). I had been given injections a few times, along with Compazine I.V. when my family brought me to the emergency room because I couldn’t stop vomiting. Both drugs made feel terrible. Compazine not only made me feel terrible, it didn’t stop the vomiting. DHE also made me feel bad – it heightened the nausea and the pain before it lessened both – but sometimes it was the only thing that could break the back of the pain and reduce a three-day siege to a one or two-day. So my husband learned to give me the intramuscular injections in my butt thus liberating me from ER visits. During the summer between my daughter’s first and second year of college, she and I were camping in the Grand Canyon and I woke up in the middle of the night with a migraine. In high school she had learned how to do injections in preparation for a summer rabies vaccination campaign in South America with Amigos, a high school version of a mini Peace Corps. As it turned out, her group dug latrines instead so her injection experience had been limited to oranges but that night in the tent I was in too much pain to care what she did or did not remember. A bigger problem: we didn’t have a lantern. I was vomiting too much to hold the flashlight and she couldn’t hold the flashlight while preparing the injection, which required breaking the glass vial, filtering the drug to make sure no glass fragments were in the syringe. As a result, we had to walk to the nearest public bathroom where there was light. That walk in the black of night was one of the longest of my migraine career.
There are two problems with DHE – well, at least two. It’s systemic and it can’t be combined with Imitrex. So if I woke up with a migraine, I had to determine if it was a DHE migraine or an Imitrex migraine because if I gave myself a shot of Imitrex and it didn’t work because the migraine proved to be a “10” on the Richter scale, I had to wait 12 hours before I could give myself a shot of DHE.
Before I leave the topic of injections I want to relate one more incident. I had read a study in which a small number of migraine patients, responded well to diets extremely low in fat. I thought it would be easier to kick-start such a diet at a spa so I found a low fee spa in Palm Springs that not only served low fat food, the chef taught you how to cook tasty low fat meals. The first day was wonderful. The food was delicious, the air was fresh and the pool was a shimmering blue. I woke up the second day with a migraine. Vomiting and pain ensued. There was a nurse on staff who I enlisted to give me the shot. In spite of her crisp white nurse’s uniform, complete with the nurse’s cap, I’m pretty sure it had been decades since she’d given anyone an injection. Maybe it was my blurred vision but she appeared to me to be on the shady side of 90. When she broke the glass vial, she cut herself, and bled all over me before plunging the needle into my butt. I did not care. My only thought: if I contract a blood disease from this woman and die, please let it happen fast. After that, however, I learned to give myself injections.
For the most part, my pattern of migraines is mysterious though there are some surefire triggers: Alcohol. I haven’t had a drink in over 25 years — not wine, (neither red nor white, sulfites or not…it makes no difference) not beer, not spirits. I say this with regret because I could use an altered state now and then. I’ve often said that I might still be tempted to drink if it triggered a migraine the next day but it arrives so quickly I can’t even enjoy an immediate high. Even marijuana, which helps ease the pain for some migraine sufferers, actually gives me a headache. Other triggers: motion sickness, high altitudes, air travel, intense lights, wood smoke, hot and humid weather.
In addition to all of the above, I have read countless articles, in both scientific journals and in the popular press and have devoured a library of books on both pain and migraines. I say with all humility, I, more often than not, know more about migraines than the majority of clinicians I have seen. Many of them have their pet theories, most of which do not apply to me. One doctor was convinced, for example, that my only problem was the analgesics I was taking. “Anyone who has a headache for more than three days in a row is suffering from rebound headaches.” I listened and listened and listened to his lecture. When he finally took a breath I mentioned that while it was true that I could have a migraine ten days straight, it was also true than I could have a two-week and occasionally even a three-week stretch without a migraine. “Is it possible for me to have a rebound migraine 21 days after the last one?” I asked. He looked at his watch.
I fear, dear reader, that I have tried your patience with such a detailed and, I assume, tedious account of my journey. There is, however, an explanation. It isn’t a plea for sympathy or even a self-indulgent wallowing in self-pity, though, I fear, I am capable of both. It is an attempt to establish my bonafides in the pain/migraine department.
And this is why: I learned recently that my HMO has a pain clinic. For some reason, no doctor I’d seen there had ever informed me of this fact. After I saw it mentioned on the HMO’s website, I asked my new primary care doc about it. I told her I had been attending a pain clinic for more than five years but it was costing me a fortune. In addition to the cost of the clinic, which was actually nominal, I have to fly to southern California every three months and pay out of pocket for my medication. It’s prohibitive. She said she would be glad to refer me to the clinic but warned me that most of the people would be in worse shape than I. About a week later I got a call from the pain clinic. The woman on the phone told me that before in order to qualify as a patient at the pain clinic, I would be required to attend a one-evening-a-week session on pain for 12 weeks. I asked if she could send me information on the content of those sessions as well as research that would support such an enormous commitment of time – my time. “Well,” she said, “we don’t really have anything like that to send.”
“Could you,” I said, “possibly come up with something like that? Or refer me to someone else who has something like that? I lose many precious days to migraine,” I explained. “Before I subject myself to losing a whole lot more, I’d like to know why it’s necessary.”
She promised to send me something. That was six months ago. I’m still waiting.
This may sound paranoid but I think this requirement is punitive. Either that, or it’s a way of making sure they have very few attendees at their pain clinic. I wouldn’t harbor these suspicions if they first evaluated each patient and then, based on his or her history, awareness of his or her medical condition and the factors that affect it, life circumstances, etc. decided the best course of action. I’m sure there are people who could benefit from a 12-week course on pain management but I’m not one of them. (When I told my husband about this conversation he said, “You could teach that course.”)
As far as I know, when people are diagnosed with diabetes they are medically cared for as well as being invited to attend a course on managing their disease. My HMO offers a course on cognitive-behavior therapy for people with depression but they don’t withhold individual evaluations, psychotherapy and/or medication before attending the course.
I remembered what my primary care physician said about the other people at the pain clinic being in such bad shape. Are they in such desperately bad shape that they’re willing to submit to any requirement, no matter how onerous?
Serious pain is woefully undertreated (see my previous blog post “Painkiller Paranoia is Over Prescribed” ) and though migraines afflict 10 percent of the world’s population, migraine research has historically been underfunded. Perhaps that’s why it took centuries for researchers to discover that migraines are primarily a neurological disorder, not a vascular one. (No wonder Imitrex and other vasoconstrictors have been of limited value. Perhaps all of them are placebos. ) This discovery promises to be helpful in designing effective migraine prevention but it’s probably too late for me. According to David Dodick, MD, professor of neurology at the Mayo Clinic in Phoenix, prevention is critical because frequent attacks over a period of time, actually alter the structure of the brain. I assume 34 years of frequent episodes has thusly remodeled my brain.
Nonetheless, I will continue to read books, scour journals, and bookmark the articles my friends and family kindly send me about the latest research on migraines and pain. I will eat healthy food, avoid all triggers, exercise, and meditate (I’m trying!). I will continue to accept, if not always cheerfully but occasionally with humor, that I have a condition that steals both time and money from my life. What I will not do is sacrifice even a minute more to this malady than is absolutely necessary. I will not give up one night a week for three months to attend a course on pain – a course that, as my husband attests, I could teach.
