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February 2012 Migraine & Headache Blog Carnival

The Twisted Road to Help for My Migraines

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One thing I can't say about my Migraines is that I haven't learned from them. One of the biggest lessons I learned is that many doctors know little to nothing about Migraine disease, starting with the fact that Migraine IS a disease.

Doctors have fed me so much nonsense about Migraines that I could fill a long blog post with that alone, including:

  • "It's a woman thing."
  • "They're just headaches. Take your meds."
  • "Have a baby."
  • "Have a hysterectomy."
  • "Take these birth control pills"
  • "Congratulations. You're an intellectual. You have Migraines."

About 17 years ago, my Migraines became frequent enough that I needed help. My family doctor didn't know what to do to help me. The neurologists where I live had given me some of the advice above, so I wasn't going back to them. My family doc suggested a neurologist about 90 miles away, so my husband took a day off work, and off we went.

Dr. Heck was a kindly gentleman who made me think of someone's loving grandfather. He was wonderful. He suggested propranolol (Inderal) for prevention and prescribed a starting dose and scheduled a follow-up appointment three months later. The propranolol helped, and over a few appointments, he adjusted the dosage. It was great. I also had high blood pressure, so it addressed that as well. Best of all to my way of thinking, it reduced my Migraine to only about half a dozen a year.

Unfortunately, as often happens, the propranolol stopped working for Migraine prevention after a few years. About 12 years ago, I was in bed all day five or six days a week with the Migraine from hell. Doctors in my area were still no help, and Dr. Heck had retired. My family doctor told me there was a new doctor in the same city Dr. Heck had been in, and she was supposed to be a Migraine specialists. I'll just call her Dr. R.

Dr. R. prescribed Topamax - 100 mg twice a day - and told me to come back in three months. Topamax didn't help with my Migraines at all, but I had horrid cognitive side effects from it. I'd walk across the room to do somthing, then forget what it was. No way did I trust myself to drive alone. At my follow-up appointment three months later, Dr. R. insisted that I hadn't given it enough time, and told me to come back in another three months. This went on for nine months during which she refused to see me any more frequently than every three months, depsite the horrid pain I was in, my other debilitating symptoms, and the fact that Topamx was doing nothing but causing side effects that were as debilitating as the Migraines.

Thankfully, all of this made me angry. I say, "thankfully," because when I'm angry, I'm very unlikely to give up or give in. I hit the Internet looking for information. Of all the information I found, the most practical and immediately helpful was learning that there are doctors who specialize specifically in the treatment of Migraine and other headache disorders and that neurologists aren't, by default, Migraine specialists.

I met a woman online who had been in a situation very similar to mine and had found help with Dr. Willam Young at the Jefferson Headache Center in Philadelphia. That's an eight-hour drive from my home, but I was desperate. Being in bed five or six days a week meant I had no life. I couldn't do anything for or with my family, certainly couldn't work, didn't dare make plans for anything. I told my family doctor I wanted to go see Dr. Young. He put through the insurance referral, and I called for an appointment. That turned out to be the next hurdle. At that time, there were only two doctors at the Jefferson, so I had to wait nine months for my first appointment.

When that day finally arrived, one of the first things Dr. Young said to me was,

"I won't give up on you if you don't give up on me."

That one sentence gave me hope. It also turned out to be very characteristic of working with Dr. Young. He never gave up on me. He always reviewed the options with me, and we made treatment decisions together. We started making progress with my Migraines in the first six months and kept going. Eventually, the treatment regimen we perfected reduced my Migraine frequency to the point where it was "normal" for me to get eight weeks between Migraines. There's no cure for Migraine disease at this time, but that's the next best thing.

Today, because of some other health issues and having to reduce some of the medications in my preventive regimen, my Migraines are more frequent again. I now have access to a good Migraine specialists just two hours from my home, so I'm working with him to adjust my treatment regimen and regain better control over the Migraines. This time, I'm not all that worried about it because along that long twisted road to help, I learned a great deal about Migraines and about Migraine specialists. It may take some time, but I'm confident that we'll get my regimen adjusted and my Migraines fairly well controlled again.

The biggest reason I wanted to share all of this was to let others who may be in a situation similar to mine know that there ARE good doctors who know about Migraine and want to help us. There aren't enough of them, and sometimes we have to travel a bit to get to them. For me, it was worth every second, every mile, every dollar spent to get my life back. I'll always be glad I hit the Internet looking for help, and I'll always be grateful to Dr. Young and the Jefferson Headache Center.

Live well,


 

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© Teri Robert, 2012
Last updated February 10, 2012.

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