Tuesday, November 22, 2016

I Disappeared - A Story of Thankfulness

I disappeared again. This time for a good reason. It's been a heck of a year.

And now that it's Thanksgiving week, it's time that I told you what's been going on. Three big things happened to me in the last year, and I will cover them over the next several blog entries. Today's entry tells the the story of the biggest event.

Ever since high school, I have suffered migraines. These aren't your garden-variety headaches, and they aren't the migraines that people go on Facebook to complain about. These are the crippling, debilitating, wishing God would just kill you right there so you don't have to feel that way any more kinds of headaches.

Mine have been categorized in the cluster migraine category. That means I get two or three really intense migraines a day. The best way I can describe them is that they feel like an ice cream headache that just won't let up. It feels like someone is trying to pry my eye out of my face with a spoon.

They each last for about two hours each, and it goes on every day for 2-3 weeks. For those keeping count, that's 21 migraines a week, or 63 migraines in a 3-week period. And it drains me. I call it my migraine hangover. They leave me exhausted and unable to focus. When I get them, I am typically reduced to lying in bed with the curtains pulled and my body temperature fluctuating wildly. I try to sleep it off. Sometimes I get warning signs and I can prepare. Sometimes, they come swiftly and strongly, and I have to call someone to pick me up from work or wherever I am to take me home.

The fluctuating body temperature and and swiftness is what drove me to get to the bottom of it around this time last year. One evening in November, my wife was working and I was home alone. I had just put my son to bed and was getting ready for a quiet night of reading. My wife called and said she was on her way home. When she called, I felt great. In the 15 minutes it took her to get home, a migraine had destroyed my evening. She found me in my underwear standing outside in the cold November wind leaning up against the house, unable to talk or open my eyes, trying to regulate my body temperature. She walked me inside, got me dressed, and took me to the emergency room.

That was the moment I decided that I had had enough. After talking to some fellow sufferers, I made an appointment with a neurologist at University of Toledo Medical Center. He spent an hour and a half with me on my first visit, and he ordered an MRI.

My brain with holes.
My brain with holes and really creepy eyes.
The MRI raised some red flags; namely, holes. My doctor thought they were indicative of Multiple Sclerosis. Awesome. The problem is that there is no single test for MS. You have to take multiple tests that will either point to "possible" or "not likely" MS. So my doctor ordered those extra tests.

One of those tests was a spinal tap. That sucked. And then they sent me home and my spinal column refused to heal/plug back up, so I was leaking spinal fluid for several days. Spinal fluid is the same stuff that your brain soaks in and protects it. So my brain was dried out and banging around in my head giving me a non-stop headache. It required another trip to the doctor and BACK onto the spinal tap table so they could take blood from my arm and use it to plug the hole. That also sucked. My spinal tap came out showing no problems or signs of MS.

In the emergency room when my spinal tap didn't heal.
They also ordered a vision test called evoked potential. I don't understand it, but they hooked me to wires and made me watch patterns on a TV screen for 20 minutes. That test showed possible issues related to MS. Then they called me and said they found a problem with the machine's calibration and needed to re-test. I went back and the second test also showed possible MS.

Evoked potential test.
My next meeting at the neurologist's office was with a doctor who specialized in MS. He ordered another MRI, but this time, of my neck. That test showed a bulged disc that was a hair's breadth from my spinal cord. So I was sent to a pain clinic, which gave me three injections of cortisone over a 3-month period.

Bulged disc.
Now, I wait. I have to have another MRI sometime this winter in order to see if the holes have grown larger. If they have grown, then we will start treatment as if I have MS. What does that mean? I don't know for sure. All of the doctors who have seen me say that my symptoms have not manifested the way MS usually appears, so I'm optimistic. The only things that have impacted my life are the headaches, and with the help of the pain clinic and the neurologist, I almost have that under control. I went about 10 months without a major outbreak. They started again last week, but with my new regimen of medication and increased awareness of my warning signals, I can usually stop a headache before it starts. So far, I haven't had one send me home or put me in bed in a dark room yet.

And for that reason, this Thanksgiving season, I am grateful for my team of 5 doctors, and my wife and parents who took turns hauling me to countless emergency room visits and procedures that prevented me from driving in the last year. I am so grateful.

In my next entry, I will share the second life change that was positive and has kept us busy for the last several months.