How Being My Own Medical Advocate Helped Me Move Forward
I knew myself the best
I recently had a visit with my current neurologist. When I left, my frustration was infuriating. She hadn’t been unkind in any way. She simply answered my questions like most medical doctors have in the past, by steering me to another department of care. My attempt to be examined holistically had failed.
However, regarding her field of expertise, the solution for me was to try the latest medication on the market for my condition. Looking at my records, she reiterated that I had been given nearly every treatment out there. Why not give the newest development in migraine prevention a try?
With a slight nudge, her suggestion was for a CGRP inhibitor, particularly Aimovig. She explained one shot would last a month and was willing to give it to me right then and there. Lasting an entire month, she repeated, CGRP inhibitors have been available for four years.
I calmly reminded her of my high sensitivity to prescription medications. If she administered the shot and there was a negative effect, it would remain in my body for weeks. I opted to first go home and research CGRP inhibitors.
Once I did my homework, I discovered, “Another potential side effect to be aware of is Raynaud’s syndrome, a condition in which parts of your body (often fingers and toes) can get cold and numb easily in cold weather or stressful situations. Raynaud’s makes the blood vessels spasm, making you more susceptible to numbness, pain, or even frostbite. Because CGRP helps blood vessels open wide, blocking CGRP can trigger or worsen Raynaud’s syndrome.”
I ALREADY HAVE RAYNAUD’S SYNDROME!
A decade ago, I was prescribed Inderal for a year as a migraine preventative. It ceased to halt my migraines. Consequently, I developed Raynaud’s.
Normally, I was very intimidated by doctors. Face to face with the experts, my confidence and boundaries come down. Yet after reading the article on CGRP inhibitors, boy, was I glad I hadn’t caved into getting the Aimovig injection. Gold star for me for having said, “no thanks.”
Ultimately, I wasn’t angry with my doctor. Yes, she missed that part of my chart. But, doctors are human. They can’t possibly keep up with all the side effects of every new medication on the market. She was doing what she was taught, prevent and treat with medication.
This message is so simple, yet it is forgotten. The people living with the condition are the experts. — Michael J. Fox
One neurologist was my favorite, even though I left his office crying. He had read the images from my MRI scan, he comforted my fear of an aneurysm. I was in the clear. But what he told me next, I never forgot.
I had a neurological disease. There was no cure. He, himself, had suffered from the same disease for decades. All the medications on the market only masked the illness. Judging from my history, my best bet would be to reduce stress and triggers that agitate the condition to which he included moving to another part of the country. As far as treating a bad migraine, Benadryl. It wouldn’t fix it, but would help me tolerate the worst of them. The derivative diphenhydramine and antihistamines like it had been around for almost a hundred years.
He was brutally honest, and that was why I liked him. Unfortunately, unless I wanted to camouflage or trick my neurological illness with prescription pharmaceuticals, there was nothing more he could do for me. He commended my attempt to prevent migraines naturally and I was on my way.
So, here I was, realizing my favorite MD was again correct. There was no point avoiding the real issue by covering it up with a mainstream medical approach that continually led me into a vicious cycle. The near run-in with Aimovig was the confirmation I needed to step forward toward my next journey.
Along with other significant factors, I’d finally hit a turning point. I made the decision to dive in and get professional help retraining my brain with Life Coach, Phil de la Hayes. For the last few years, I’d been exploring the subject of brain plasticity. I believed the underlying cause of my migraine condition was actually TMS, an acronym coined by the late Dr. John Sarno for Tension Myositis Syndrome. The whole body and mind approach wouldn’t be quick. It wouldn’t be easy. But I had faith, the results would be worth it.
- My preference was to use a more natural approach. By establishing what I wanted ahead of time, it was easier to set boundaries for my own medical care.
- Allowing myself time to research the doctor’s suggestion, gave me the confidence to make the right decision for myself.
- Doctors are wonderful and valuable people. Yet, there was nothing wrong with second-guessing my doctor’s plan for me.
- Every previous prescription, procedure, test, surgery, result and side effect was a timeline etched into my brain. I knew myself the best.
- Best of all, I was behind the steering wheel.
