I’ve still been chasing a return to normal health and a normal life for the last 5 years. What started out as debilitating flu symptoms, which after much testing, led to a diagnosis of Vestibular Migraines (migraines, near-constant dizziness, fatigue, memory and comprehension/cognitive problems and HIGHLY entertaining neurological problems). I want nothing more to be useful again, both in income and employment satisfaction, running and exercise, parenting up to my standards, podcasting and public speaking, putting creations into the world, and just living more fully.
It was a shock, especially as swiftly as onset incapacitated me, but in hindsight, I’d been battling my headaches and other symptoms while minimizing their importance for years. They were nothing compared to what my ex-husband’s family experienced with their hereditary migraine issues, so who was I to complain? The frequency even triggered a halt to using Tylenol products because of their liver damaging potential, and I’m still not allowed to take them.
Five years later, I have a mixed bag of chronic illnesses, having added fibromyalgia, tmj, etc., and have been chasing pain relief since November of 2009. Onset was a spectrum of symptoms from what was diagnosed as vestibular migraines and as I learned to adapt to them, symptoms of tmj and fibromyalgia became the focus of attention. When nearly all of of my 18 tender points, if not trigger points, are firing off pain, it’s easy to understand why I was chasing it as opposed to the migraines I’d been receiving treatment for almost 3 years for from my respected Neurologist, Dr. P.
I’d been juggling both, with nothing more from my neurologist at one point than break-through migraine pain management continuing, until last year. Dr. P. told me he couldn’t help me with my migraines until my Rheumatologist and I had my Fibro under control without opiods, which are migraine triggers.
He was concerned about possible interactions and took away my final tier of pain management – a pill that lets me sleep, no matter how intense the pain. That pill kept me sane for many years, just by being in my possession. It was reassuring because if the pain became unbearable, I would still be able to relieve it through deep sleep.
Many times, I would awake rested without the migraine. I rarely took it, as it could be risky for me to use otherwise, since I would have taken other medications up to that point. Again, just a reassuring pat would lower my anxiety and panic response, and at times, was calming as a valium.
And then, just, gone. It was a scary adjustment, but not earth-shattering as other life issues have been pressing in as well. I focused all my efforts on finding something with her that would work, trying a variety of medications and having some gnarly reactions to all of them.
Then, end of last year, I reported to my Rheumatologist the results of the latest pain cocktail, and she told me that she doesn’t have any other options to try on me.
Now I’ve redoubled my efforts with my Neurologist, with only a handful of options left.
I realize these health issues are nothing compared to health issues of others that I know or don’t know. But I grant myself the same kindness I do everyone else — a person’s pain shouldn’t be compared from one person to the next because we are all traveling with our own sadness, regardless of the reason.
It’s not a competition, this is me speaking about me, in a place I feel safe to speak, humbly, before I forget it.
