Saturday, June 2, 2012

#NMAM Tea for Two

If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why? I would bring my first GP from University of Washington Physicians, Dr. Ramses. He completely doubted me, and when I finally brought my mother in, he explained he was trying to push me off with mostly harmless medications because he thought I was manifesting these migraines as a tactic to get attention from my multiple boyfriends. How disgustingly rude is that?

Turns out, if he had just run the tests I asked him to run, he would have seen that my immune system was attacking my pituitary, and that my migraines were a result of that furious attack! If he would have stuck around to see me go through the Occipital Nerve Stimulator study, he would have learned that I can hold a steady conversation with 20 milliamps of current directly to my nerves. Why? My migraines shot way past 20 milliamps of pain.

The Occipital Nerve Stimulator (ONS) was an implanted bionic device, used to treat chronic, recalcitrant migraines. Chronic means more than 15 days per month (mine were daily). Recalcitrant means difficult to treat (I had been on every medication known to man, and through every treatment short of cutting nerves). The ONS was surgically implanted. The device sat above my left hip (in the butt), and two wires led from it, up my spine, to the base of my skull, where the Occipital nerves are.

After they implanted the device, they had to program it. They would turn the machine on, and then I would tell them what I wanted the maximum setting to be. It felt like the same uncomfortable, buzzing sensation you get when you hit your funny bone. You'll notice that after you "hit your funny bone" it's difficult to feel your hand or get it to move. This was the same principle for stopping the migraines. Send enough static nerve noise down the line and then the migraines can't generate. It also helped stop a migraine in process, when used over time. I had a really bad migraine when they were programming the device, so I figured that was good fortune in a way. They sat me in a dark room and turned the device on.

"Now let me know when it's feeling liek too much and you want me to stop."

"Okay... Keep going... Keep going..."

"Are you sure that's okay?" she asked very nervously.

"Oh yeah, this migraine is killing me. Keep going... Keep going.... No I'm serious, you can go a lot higher than that..."

"I'm sorry," she whispered. "It doesn't go any higher."

I didn't understand why she was so impressed until later. Most of the people in the study used the device between 4 and 8. I was the only person to use it at 20. My migarines could go higher than that. And they couldn't legally go any higher than that because it starts to damage the nerves.

I am a freak of nature when it comes to pain tolerance, and a freak for the amount of pain I can generation in my own body. It's amazing. Inhuman. It is through ignorance alone, of exactly how bad it was going to be, that allowed me to suffer through it. Four and a half years of freaky levels of pain. And here I still stand.

I want to invite my first GP over for tea.... a big old heaping pile of crow, and a beautifully decorated slice of humble pie. I'll show him the videos of the study sessions, where they adjusted the device, to prove to him just how awesome my pain tolerance is. The napkins will be embroidered with: I TOLD YOU I WAS SICK!

(*lol* Dream big!)

I had the device in for a few years past the completion of the study. After it was able to stop my 4.5 year migraine, I was able to treat with pills again, and those were much more gentle than the device. Plus, I ran into some user difficulties because the device wasn't designed to run at 20. The way it worked was there was a battery that you charged, and then you held that battery up to the device, and it recharged the device. They included little sticky plates and an even a belt, because recharging the device took a long time. Then, recharging the recharging battery took a long time too. They had to give me two batteries, because I ran the device so high. I would have the device on, I would have it charging, and I would have a second recharging battery charging. The second one of the recharging devices was done, I would swap it out with the other battery. I had to keep a near constant flow of charge to the device to keep it running at a level where it worked. It was like I was plugged into a wall. That's no way to live! So when it finally got to the point where I could use medication safely and effectively again, I switched back to that.

The device also made it impossible for me to get MRIs, and with my pituitary disease, that wasn't a good combination. So a few years ago, I had it removed. And since moving to a higher elevation, the severity and frequency of my migraines has significantly decreased. You couldn't even call them chronic anymore.

Yes, I've been a bionic woman. Pretty cool, huh?


  1. I loved this post :D Gee, I wonder how long my list of potential invitees would be for CROW, lol. And which to choose...

    1. Heh... I'd love to be a fly on the wall for *that* conversation!