Finding A Doctor Actually Qualified to Help You #MHAMSMC #MHAM

Over the years, I’ve written multiple articles about my personal struggle to find a doctor who could actually help manage my chronic migraine disease. With Alice-in-Wonderland syndrome, severe vertigo, a plethora of brainstem issues, and the intractable nature of my disease, my case is not an easy one to treat. For that reason, I’ve seen primary care doctors, pain specialists, neurologists, psychiatrists, massage therapists, holistic providers, and some of the best headache specialists in the nation since 2007. I know first hand that who you see, and how much that person knows about migraine disease, makes a huge difference in the variety and efficacy of treatments available to you.

If you’re having difficulty finding a doctor who can actually help treat and manage your disease, you aren’t alone. Thankfully, there are numerous resources available to assist you in finding that person or team. As part of the June 2017 #MHAMSMC, I figured I’d go ahead and share some of those sources here:

Migraine Specialists-3

Also worth reading:

Who Works with Migraine: The Healthcare Providers You Can Turn to For Help

What Is a Headache Specialist? Do I Need One? And How Do I Find One? 

Getting a proper diagnosis and the best treatment available is key to quality of life for those of us living with migraine disease. Hopefully, the above resources will help you find improvement if needed.

 

Expectations Too High?

Last Friday, I finally saw a headache specialist. Instead of the results, optimism, and high spirits I expected to carry out hand-in-hand with new advice, I left the office disappointed and discouraged. 

After driving three hours across Texas to meet with a $300/hr specialist, I had anticipated some treatment, some new information, something. Perhaps my expectations were too high.

Acting upon the advice of my specialist, I am now off Topamax and onto Bystolic: a blood pressure medication also used as a preventative. While I feel better mentally (no more Topamax personality takeovers,) my migraines have not changed in spite of the new preventative or the 6 bottles of Migranal I was told to use every 8 hours for 3 days in hopes of breaking the increasingly persistent Migraine cycle. In fact, the Migranal seemed to make things worse. After every administration, intense nausea set in and I almost blacked out – weaving to and fro, grasping desperately for something to cling to as my vision disappeared into black spots. 

Other than new medications, he did advise I see an Ear, Nose, and Throat doctor in order to have an inner-ear balance test as I have such extreme vertigo and lightheadedness. His last word of advice? A hospital stay for intensive IV treatment lasting an undetermined amount of time. As I was given no guarantee it would work, slim chances that even if it did work the relief would be temporary, and my insurance deductible of $5K is no where close to being met – I’m having to ponder this a bit.