Headache Journal

Series: Migraine's Vicious Circle, article 2 - a new circle

Scott Haines Tuesday March 14, 2017

Continuing my series on migraine's vicious circle, I will discuss the continuing saga of living with chronic migraine.

A new circle

As I said earlier, it becomes a never-ending circle. The migraines have taken some of my memories away—I am very fuzzy for about 10 years. 11 years ago, I met and then married Sara. Just a few months after we married, she realized that I had "changed". I was always irritable, never wanted to be in the light, wore my sunglasses everywhere (even outside in the dark) among other things. It was at this time, that we looked up a local neurologist. He tested everything it seemed—CT scans, brain MRIs, bloodwork, sleep study, etc. The only thing that ever turned up was sleep apnea. In all other regards, he judged that I was completely healthy and could not find a cause. I got my first CPAP machine. (LUKE, I am your FAAAATHER—still funny...to me. ;))

I had been taking Imitrex for several years at 50mg a dose, and it seemed to help. However, insurance would only fill 9 pills a month and 9 pills cost $180 at that time. Nine doses got me through most months, but the frequency increased. Some months I needed 12, 18, 24 or more doses. Other months, I didn't need any. To deal with it, I rationed my pills (and still do today). I ALWAYS fill the prescription and stockpile them or the "bad" months. I also apply my "rating" system to the headaches. Is this worthy of a migraine? How many have I had this month? How many pills do I have left?

Treatment Reboot

We're in an age where everything is getting "rebooted"—Star Trek, Indiana Jones, etc. The same happens with migraine treatment. There comes a time when a treatment loses its effectiveness. That's when you move on—search for something else. However, as you're looking for a new treatment, the only option is to continuing increasing doses of the current treatment.

When the 2nd "neurologist" didn't "solve" the problem, Sara found another one—in Indy. I've been with Dr. Zdobylak for nearly 10 years now. His immediate reaction to my case was to find a preventative to try to control the headaches. This was by no means a cure or final solution to the problem, but he offered a way to regain my life while we looked for a cure. This "miracle" was Topamax. For 6 years, Topamax saved me from the pain. Nearly immediately, the Topamax reduced my migraines by 90% (from 150 a year to 15). However, it did take 150mg a day of Topamax—which at the time was the maximum FDA recommended dosage. Every two years, I increased my dose by about 50mg, within 4 years I was up to 250 mg. 2 years later, I jumped from 250mg to 400 mg and then to 450--the "cure" was done.

In the 7th year on Topamax (at 450mg), I anguished through 340 migraine days (yes--only 2 and a half days of comfort each month).

Treatment Reboot #2

Topamax had stopped working so we had several more options. As I've stated in earlier articles, there are 4 classes of drugs used for treating migraines—blood, seizure, memory, anti-psychotics. It was time to move from the seizure drug (Topamax) to memory drugs. We tried an Alzheimer's drug for 6 weeks—I started having seizures. We switched to a different memory drug and the seizures stopped--but it didn't work at all!

After another 6 weeks we tried an anti-psychotic. It didn't help at all, but it sure was fun to mess with the family on that one. ;) After the anti-psychotic failed, we tried another seizure drug to no avail. So, at this time, Dr. Zdobylak recommended Botox—which had been recently approved for migraines. The first year on Botox, my migraines decreased from 340 to about 100—not ideal, but tolerable.

At this time, I decided that rather than decreasing (as most migraneurs find) with age, mine would increase and I better accept that fact. So, I began doing my best to accept and live through it.

Contact Info

Marion, IN 46953
‪(765) 997-6017‬

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