My 20-year Migraine Journey
For years, I’ve wanted to write about my personal experiences with my 20 year battle with migraines.
It will all be in my book, a chapter, as I never want it to be what defines the whole me. Writing is my passion. For now, I will share my story with you. In hopes that others can relate and perhaps benefit in some way from reading of my experiences.
They started after high school. Once in a while and just for a day or two. As their frequency increased, I started to seek help by traditional means. Cat scans were done, X-rays, EEG, sleep study, blood tests, allergy testing, visits with my primary care physician, neurologist, ENT specialist, gynecologist, psychiatrist, chiropractor, acupuncture physician; I’ve seen them all. All of my tests were normal.
Initially, I was diagnosed with fibromyalgia, generalized anxiety disorder and menstrual migraines. The barrage of prescriptions followed. For years I was on Xanax. They put me on numerous meds (at different times) to try: Lyrica, Elavil, Soma, Flexeril, Paxil, Wellbutrin, Cymbalta, Zomig, Maxalt, Imitrex, Relpax, Axert, Vioxx, Frova, Treximet, Ambien, Topomax, birth control hormones, patches, injections, progesterone, testosterone, and many others I can’t recall. For pain, when nothing else would work, my doctor simply gave me painkillers like Darvocet, Percocet, Norco, Tramadol, etc.
For 15 years I was on Xanax solid. I (proudly) weaned myself off just last year. I believe my dependence on that chemical worsened the frequency of both the migraines and headaches. I don’t recommend that drug to anyone. For me, it should have been a short-term go-to amidst a panic attack. But I became dependent. Having ceased the Xanax altogether, I could initially tell a huge difference in my headache frequency. I figured out the constant ups and downs of that med were triggering the pain in order for me to continue the need to take it so I wouldn’t feel. It’s been a whole new journey learning simply how to feel again.
As for my experiences with all of the other medications, they didn’t work so I had to remain true in my belief that these chemicals do not belong in our bodies and quickly stopped taking them when I felt it was time.
Ten car accidents later (none were my fault), they determined I have three bulging cervical discs in my spine. I went through extensive therapy with weekly routine adjustments and massage. I continued to have migraines sometimes lasting two weeks with constant headaches on most other days.
I have been so lucky to have understanding and compassionate people surrounding me throughout this journey- both personally and professionally. I always let everyone know up front that I suffer from chronic migraines. And anyone who couldn’t at least try to care enough to learn about what I deal with, I felt they weren’t beneficial to have in my life.
It’s been difficult to hold steady work because of the pain I go through. My last solid job lasted 5 years. My boss understood that once in a while I needed to crawl under my desk and curl up with my eyes covered and ear plugs for an hour or so until I could find the strength to be productive again.
I left that job 2 years ago because the ever-increasing stress became an exacerbater of my pain. I’ve spent these last two years staying with family, doing whatever freelance work I could find to help get by, while extensively researching anything and everything I could to try and beat these migraines.
I decided to try diet changes, exercise, yoga, meditation, hypnosis, acupuncture, reiki, other alternative therapies and herbal supplements that claimed to be beneficial in headache / migraine prevention. With no health insurance to fall back on, I knew I needed to utilize my research capabilities to leave no stone unturned.
As of today, the only prescription medication I take is Maxalt. It’s my security blanket. And with their gigantic price tag and limited allowance of tablets per month by law, I have to use them sparingly. I know that when I am going to reach the point of incapacitation, I will at least be able to somewhat function 3 hours after I melt that Maxalt sublingually. My daily regimen consists of magnesium supplements, a daily multi-vitamin, and Piracetam capsules for cognitive function.
Acupuncture and massage do help. But regular sessions can become costly very quickly. The only things in diet that I noticed triggered a migraine were aspartame and alcohol. Caffeine is actually something that helps alleviate some of the head pain and I will never give up my blessed coffee.
I write this as I go into day ten of solid migraine mode. It hurts to suffer so greatly and can often make you feel worthless, hopeless, helpless, and downright insane.
There are times that my brain feels like it’s on fire, that my eyeballs are going to pop out of my head or that there are bugs crawling around in my skull. That’s hard for people to grasp unless they’ve felt it themselves. I can easily understand why we must appear crazy in the eyes of people who’ve never experienced what we do. Another reason it is so vital that we spread awareness and never let our ailments keep us from speaking out.
On the positive, I do know that I am overall a very positive soul. It’s what has carried me this far. The love and support I receive from people in my life is remarkable and encouraging. I’m a fighter. And I’m strong. I just need to keep reminding myself and that’s what carries me through the tough times. The support from people I don’t even know also give me a feeling that I’m not alone in how I’m feeling and what I go through. The stories I read on this site could often have been written by me, they’re so similar. And I’m grateful for those fellow migraineurs who have had the courage to share and paved way with strength to get their stories out there. It is you all that have motivated me to share my own. Thank you!
I continue my quest to find what knocks out these migraines once and for all. I wish the same for you all.
Disclaimer: Each of us is beautifully and uniquely different so please use caution when trying any new treatments. What works for one does not work for all.