Migraine, not just a headache.
Try Complex Neurological Disease!
I was first diagnosed at a very young age after continuously coming home home from elementary school not feeling well and not wanting to go to my afterschool activities at the time. I would lean my head on the cool vibrating school bus window on the ride home and then hide out in the coolest bedroom in the house until one of my parents got home and found me asleep or crying alone in pain. I was 5 maybe 6. Fast forward many many moons and lifetimes later and I’ve experienced the “every once in a while migraine” symptom, to the “oh shit! I’m chronic now” symptoms. I’ve heard all the friends and family words of encouragement offers of “have you tried this or that or I saw this person on Facebook or this thing on Google…yada yada yada”. I appreciate their sincerity but my chronic illness is not something soaking my feet in warm water will cure. I’ve tried the Tylenols, the ibuprofens, and the opioids, hell I tried just about ALL of the pain meds before it was realized that Migraine was a nerve problem and not a pain problem, hence, pain meds just dont tend to work. Thankfully, I found an amazing set of people at an awesome Headache & Pain Clinic that kept on top of the latest research for Migraine, all types, causes, symptoms, etc. I was a lucky patient. Seven years ago I underwent a clinic that taught me how to treat myself and my body for my symptoms before, during and after having them. I learned how to read my body and I learned when I was most likely to have aggravated symptoms of Migraine. I was able to distinguish between knowing when it would be a good chronic day and a bad chronic day. I learned how much I could do throughout the day and when to rest to save myself from overdoing it and shutting down for the rest of the week. Yes I was also on several meds, Botox, and keeping headache journals. At some point my husband and I decided we wanted to have a baby. That meant weening off certain meds and going without Botox. I ended up switching them out for nerve blocks instead. When we finally became pregnant, I’ll admit, the migraine symptoms lessened during pregnancy but I would still have nerve blocks every so often, as that was the only safe thing I could take or have during pregnancy. The moment my son was born the Migraine symptoms came back with a vengeance. It was multitudes worse then it was before, I didn’t even think worse was possible. I was so wrong. Again, my amazing team of doctors and clinicians got to work and put me on a good course of Migraine meds and I felt better after about 2 years of trial and error. I cannot begin to thank them.
It was a relief to not try and walk around with an ice pick twisting through my brain while my heart tried to escape through my eyeballs and pretend I was ok so the rest of the world wouldn’t feel uncomfortable. Ultimately, many lost jobs later and other reasons, I decided becoming a stay at home mom was best for me. It suited the hermit status living with Migraine disease called for.
Eventually, my chronic status became intermittent. I’m not saying everyday was sunshine and rainbows but I was living a life without Migraine symptoms everyday, which was a major improvement.
Unfortunately, it was a bit too good to be true because one day I lay down and I started spinning, not the room, me, and I couldn’t stop. I wanted off this demented rollercoaster, but it didn’t stop for 48 hours. Apparently, women in their early 40s, with a history of Migraine symptoms most of their life are commonly diagnosed with Vestibular Migraine as well. So now, I walk on a boat most days and it may appear that I’m drunk because I have trouble with my balance, but trust me I’m not. I can conjure the rollercoaster stomach twist just by explaining it to others, or writing here, now. I live with constant nausea and fear that I never know if and when I might get so dizzy I can’t function enough to pick my kid up from school. Thankfully, again, I have an amazing team of people who knew exactly what I was going through the moment I explained it the first time, the week it happened, and we began immediately trying all the meds to see what works. They are my saving grace! I can walk semi straight today because of them and I have the tools in my toolbox to care for myself when things begin to make a turn for the worse.
This team is part of the USF Tampa Headache Center and the funds that are raised through the Miles for Migraine Event will benefit them to support local Migraine research and fellowship training programs as well as Miles for Migraine programs and services.