Doctors and Migraineurs: Improving Communication When I am Not Satisfied

This post is in response to the topic posed by this month’s Migraine Blog Carnival: Your best tips on improving communication with doctors. My first reaction, mostly because I have had more than my share of neurologists and headache specialists, is that I have no ideas. If I really had an answer, I would not be on neurologist number 4. Wait a minute, given I have seen several different specialists, I must have learned something along the way. For me, the hardest time for me to communicate with a doctor is when I am dissatisfied. This is what I have learned.

1. Know what you want: this can be harder than it looks. I usually knew what I didn’t want, but not what I wanted. I learned by trial and error, but I suggest that you take the time to become well-informed about Migraine Disease and to ask yourself, “What exactly do I want from this doctor?” What is most important? Expertise? Time? Compassion? Knowing what you want will make it easier to notice when you are not getting it.
2. Talk first, bail later: Bailing (switching doctors without a word) has been my MO from the beginning. I don’t say anything; I just leave. I may have avoided the pain of expressing dissatisfaction, but I didn’t give the physician the chance to change. I suppose that if I had expressed my concerns first, I may have seen fewer doctors. But, I have to admit I was afraid. Afraid of standing up for myself? Afraid of expressing dissatisfaction? How could I be dissatisfied; he’s a doctor! Yep, strange, but true.
3. Ask for a second opinion. Bite the bullet, just ask. I agonized for months before I asked. I had every excuse in the book. He is so nice, so caring. He gives me all the time I need. He is so persistent. In the long run, being nice, caring, and persistent were poor substitutes for progress. I had been seeing him for 2 years and not much had changed. Well, I finally asked. Boy, was I relieved when he said sure. He even made the referral.
4. Leave, if you must, but on good terms. After meeting with the new doctor and asking several pertinent questions about her approach and what her goals were, I decided to make the switch. Before I left his practice, I thanked the doctor for all he had done and that I admired his persistence. He shook my hand and told me he wanted to know what happens. How’s that for a happy ending?

Read Full Post »

Migraine and Other Headaches: Book Review

Dr. William Young and Dr. Stephen Silberstein are two of the many headache specialists who have furthered our understanding of migraine disease. I would classify their book, Migraines and Other Headaches (2004), as one of the “must haves” for migraine sufferers. It is a perfect introduction to the topic of migraine disease so it could easily be a “first read” for migraineurs. There is enough new material so even well read migraineurs will benefit from reading this book. Eucation about migraine disease and the necessity in having a strong patient-doctor team are two threads that are carried throughout the book.

“It is important to realize the difference between a headache cause and a headache trigger. Among other things, stress and weather changes can trigger a [migraine] headache….A brain tumor, a high fever or head trauma can cause a headache” (p. 19).

Usually well-meaning friends and family pinpoint certain foods as causing migraines. I am sure most of you have heard something along this line, “My husband’s second cousin’s wife had migraines and ever since she stopped eating chicken (beef, pork, chocoloate, brocolli, seafood) her headaches have stopped.” The authors make it clear that foods are NOT a cause of migraine, but they can be triggers. However, they were not as clear about other factors.

The scenario they chose to illustrate the difference between causes and triggers was less than helpful. They introduced a migraineur with easily treatable migraines who developed a change in her migraine pattern and a new headache. The change was caused by a herniated disk that, when corrected, reverted her to the previous migraine pattern. The authors did not make it clear that the herniated disk triggered more severe migraines and caused the new head and neck pain. They failed to emphasize that even after the herniation was corrected that the woman still had migraines and that, it could not be the cause of her migraine attacks. A less than careful reader may decided that migraines are caused by herniated disks. While that may be obviously not the case (not all migraineurs have herniated disks), I have had more than one person tell me that my migraines are caused by the problems in my neck.

Some readers may consider this to be a minor point, but my biggest battle is in explaning the difference and that, because there is no one discernable cause, migraine has no cure. There is no silver bullet.

“Headache treatment should be a two-way street, with the patient contributing a goal and desires about his headache mangagement, the physician contributing her knowledge and values, and the final plan incorporating both perspectives.” (p. 45)

Balance, give and take, progress and regress are all a part of living with migraine. Nowhere is this more evident that in the doctor-patient relationship. The authors encourage open communication about goals and expected outcomes. Migraineurs are encouraged to share their experiences, expectations, and goals with their caregivers. Physicians have the responsibility of educating their patients, letting them know what is known and not known about migraine. They need to let their patients know what is a reasonable treatment outcome. Young and Silberstein equally encourage patients to have reasonable and acheivable goals. Migraine is complex and treatment is often individualized. It takes time to acheive proper migraine managementPatients have the responsibility in making some lifestlye changes.

I found this book to be a useful resource, but I also have one more concern. There are no citations or references. I was disappointed not to have a reference for “… an important study conducted to help doctors determine what strategy to use in selecting treatments…compared two strategies of care: sequential care and stratified care” (p. 89). I would like to read the study and its outcome. It may become helpful in determining which would be most helpful for me.

Read Full Post »