Posts Tagged ‘migraineurs’

Our Migraine Journeys

We all have a journey related to Migraine Disease. Most of my posts have no comments, but I want this one to be different.

I know you are out there. Tell me your story.

When did it begin? What have you found helpful and frustrating along the way? What would you have done differently? What do you want others to know? Where would you like to be physically, emotionally and spiritually? Who is travelling with you? How is the journey going for you?

I will start…

My journey with Migraine Disease began when I was 10 years old. My mother (also a Migraineur) thought I sat too close to the TV. I didn’t have many Migraine attacks until I was in my mid-20s. The attacks were episodic (a few a year), but gradually increased until they became nearly daily in 2001.

I found several things helpful: ice, dark room, really good sunglasses, compassionate doctors, understanding and loving husband and children, a loving God, triptans, the Migraine Community, and this blog.

I have found fewer hindrances: people who think Migraine is just a bad headache, insensitive ER docs who make judgments and under-treat my pain, my own ignorance about Migraine Disease, and sometimes my bad attitude.

What would I have done differently? 2 things: I would not have chosen a neurologist solely on the knowledge that he was Irish. (I really did!). I would have requested a second opinion a year sooner.

Where would I like to be? Physically I would like to reduce my Migraine attacks to 2 or 3 a month. Emotionally, I would like to be joyful most of the time. I want to be content with my circumstances whether they are good or bad. Spiritually, I want to be able to thank God for my life regardless of my circumstances.

Who is travelling with me? A loving husband, Dave, a knowledgeable and skilled doctor, faithful friends, my Lord Jesus Christ, and the Migraine community.

How is it going for me? Right now times are tough. I have fibromyalgia, too, so my life is complicated and I don’t have the energy to do many things I could do last year.

Now it is your turn.

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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.

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