My story (or is it really that of the whole family?)
I say it’s “our” family story, ’cause while I’m the Migraineur, my DH is the partner, ice pack supplier, ER driver, disappointed in the failure of another med, elated by small changes, and overall person I know I have in my corner.
My parents are my supporters, emotional, financial at times, and willing to do anything for me. My Mother is my teammate and support when I go see my Migraine specialist in Texas.
With all that said. I suppose, it’s MY story. How it started, I don’t really know. But… I’ll presume that I know the story- as far as it impacting my life, anyway.
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In January of 2005, I had 2 ER visits within 2 days of each other. The first one? I was one of the earliest victims of a bad batch of contact lens solution which caused fungal infections or other problems, some leading to blindness.
The second trip- I had pain in the OTHER eye… BUT with POUNDING around my eye socket. I was scared that it was more of the contact lens thing.
No. That night, I was diagnosed with Migraines. Given little-to- no information, and sent home from the ER with a referral to the Neurology clinic.
I wish I could have skipped ahead in history, as I now have the prerogative to do as the author of this story.
One night, I was scared. Really scared. And in pain. There was, at the time, a Migraine helpline. I called it at 4am. It’s not there anymore, as it wasn’t used much. However, I think that saved my life.
I joined a Migraine forum and found others like me- others struggling with the same issues, meds, and learned about Status Migrainous. Thus I became a regular at the ER, as my Migraines rarely (at the time) broke within 72 hours.
Skipping far ahead, and being affected by the results of car accidents, having bulging disc and herniated disks, knowing that my neck was a major problem, and adding to the Migraine issue, I started getting Occipital blocks, trigger points and other treatments done to the neck. This was helping, and is still a VERY important part of my story.
But I had gone through doctor after doctor here in my native NC. And I knew that I deserved better than the care I was getting. Finally, I threw in the towel.
Unfortunately, by that point, I was also out of work. Layoff. It wasn’t going to be easy to pay to go to a doctor out of network, and out of state. My parents INSISTED- after watching me suffer for WAY too long, and in August of 2008, I boarded my first plane down to Texas to start treatment with my current specialist. My dad met me in Texas, so I wouldn’t have to be alone.
Not going to say it was all roses since then. However, I have stayed out of the ER! I have a preventive regimen that works pretty well. I’m out of bed, I get weeks without pain. I picked up a SMART, wonderful local headache specialist to work with my Texas doctor, and I’m lucky to have two such providers who are totally on my side.
Last year, we started botox for my cervical dystonia. I can’t believe how much of a change it made in my life. Having my neck not creating spasms is amazing. I’ve gone since June since the last botox injections, and while I suspect that it’s slowly wearing off, as I’m feeling the neck kick up every once and a while, I can certainly get through the holidays before having to worry about having to make an appointment in early January.
I’ve come far. I have information, a Migraine family, my “toolbox” to knock out the worst of the Migraines- haven’t gotten past 24hrs in a LONG time. Still, I say this with cautious optimism. Who knows what tomorrow brings. Still, I’m happy to wake up tomorrow and see!
My DH and I have our lives back, most of the time. My parents have financially made this possible, and we laugh, and I can’t thank them enough for all they’ve done.
And as for the friends I’ve made along the way? I’m genuinely proud to call them some of the most amazing people in my live. Much love to them- also my family.
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