Does This Ever End?
Well, here we go.
I am sufficiently anonymous now, so I’ll start venting.
I’m 41 years old, have a wonderful family with three young kids and a saint of a wife. I have a good, well paying job that is challenging (engineering). I’m intelligent, very funny, and love to drink beer and socialize (when I feel up to it).
When I was in 5th grade, I was having the time of my life. Best teacher ever, good friendships, everything going on was good. I remember sitting down and thinking, “It’s funny that you can feel so good, yet your head still hurts.”
Starting back in high school, I would get flashing lights in my vision followed by severe pain, and sometimes episodes where I was a bit confused (couldn’t think of numbers, seemed like I was floating, etc). I was taken to a doctor where they performed some tests, and determined that I was having migraines, and was depressed.
In high school and even college I was able to get on with my life with occasional bad headache days, but not too big of a deal. I had some medicine to take to abort them, so I was good.
Then I graduated from college. After a few months of working, I realized that my headaches were getting in the way. Why now? In school, you are limited in what you do by the assignments that are given to you. In real life, the sky is the limit: if you want to work harder, learn more, challenge yourself, you can (assuming the right career path). Well, my engineering job happens mainly in my brain, and I realized that I was being held back by pain.
The first doctor I saw said, “There’s nothing we can do for your migraines.”
I hunted around until I found who is supposed to be one of the best in this region. She has helped me try a lot of different medications, but to no resolution.
She sent me to MHNI for three weeks. I got too impatient. I felt a little better so asked to be discharged. Ugh. I should have stayed longer.
I tried everything you can think of, including occiptal nerve stims (totally regret due to the scars).
I have quite the gut going on and the jitters thanks to Depakote. Love that stuff. Well, love the benefits, hate side effects.
Then I found my current doctor who realized that my temporalis muscles are VERY large – the largest he’s seen. (People have postulated that it is because I talk to much, but it’s not; it’s because the words I say carry such great weight. I’m so deep!) He tried nerve blocks, and I had the best experience I’ve ever had. While injecting me, he found that the muscles are almost two inches thick!!! In comes Botox (actually Xeomin, but I’ll keep calling Botox to keep things simple) with the goal of getting the muscles to atrophy. He gives me more Botox in the temples than he has ever even attempted. He says he’s surprised that I can still eat. (My muscles are huge! Be impressed, women!) Yes, I do have a mouthguard that is meant to keep me from clenching.
Unfortunately nothing has been able to get rid of the constant pain I feel. The confused episodes are almost gone, but I still have multiple days in a row where things go to hell. Depending on the year, aura is gone, or aura happens daily. (Right now it’s daily.)
The latest Botox didn’t take for some reason. He said it looked like I didn’t have as much atrophy, and I did notice that crunchy foods weren’t making my jaw tired. I have had many bad days, and I’m so tired of it. Motivation at work is severely lacking. Ugh.
I ordered a Cefaly (I call it the Siphilis or Wonder Woman’s tiara) from Canada. Let’s see if that does any good.
I believe my headaches are not nearly as bad as those that others get. If I rate my pain on a real scale, I would say that a cold headache (ice cream) is much higher than even my worst migraines. But it’s not just the pain, there are multiple factors that make me decide how my migraine is:
2. Mood or current ability to cope with pain
3. Cognitive: how smart am I?
So, I don’t think my migraines are as painful as many of you out there, but if you put all those factors together for as many days straight as I have had, it’s pretty darn awful.