The making of a Migraine advocate

I haven’t always been a Migraine advocate. My journey with migraine started out a lot like many of you. The first attack hit when I was 5 years old. My parents were advised not to make a big deal out of my “headaches.”  They encouraged me to rest, and learn how to “live with it.” I really wasn’t given a choice. Learning to live with Migraine was my only option. My strategy was to pretend like I didn’t have Migraine. I tried to be like the other kids. I hated my sensitivity to lights, sounds, and smells. It was embarrassing to have horrible mood swings right before an attack. I took way too many OTC pain pills in an effort to hide the truth.

It was like this until just before my 38th birthday. After years as a stay-at-home mom, I started a full-time job. Being a glutton for punishment, I also enrolled in graduate school. Now I just had to find a way to keep Migraine from interfering with my plans.

I googled migraine.

You’ll never guess who was at the top of that page.  The title drew me in as I read, “Help for Headaches” and clicked on that link, desperate for help. On an uncharacteristic impulse I ordered the book, Living Well with Migraine Disease and Headaches. After bookmarking the site, I resumed my search. Next I found a Yahoo discussion group dedicated to Migraine. I actually met Teri Robert on that discussion board, but it was her book that changed the way I think about Migraine. Before that day, I saw Migraine as a nuisance to be swatted away. It never occurred to me that not getting specialized treatment might actually be hurting me.

I surrendered to Topamax.

Despite my efforts at good headache hygiene, the attacks still came way too often. My family doctor didn’t have any other options for me. I knew I needed a specialist, but had no idea how to find one. It wasn’t long before Teri invited me to join a Facebook group. She was convinced that I would only get good treatment by seeing a true headache specialist. A lot of other group members agreed with her. She almost had me persuaded.

It was too good to be true.

Doctor #1 was a plastic surgeon who offered the hope of a cure through Trigger Site Release surgery. The temptation was too great. I signed up for the Botox diagnostic trial and waited to see if I was eligible for the surgery. Ultimately the doctor deemed that I was not a candidate and stopped providing the few Botox injections that had actually been helping more than any medicine. That’s when I nearly ended it all.

Recovered from Depression, I was ready to finally find a true headache specialist. The problem is that there is only one UCNS-certified headache specialist in Kansas and not anywhere near me. In order to find one that had the expertise of the certification, I would have to start interviewing doctors.

WANTED: a doctor who knows more about Migraine than I do.

Doctor #2 discovered I had sleep apnea. Getting that treated eliminated almost all early morning attacks. Unfortunately she was so booked up that appointments were six months apart. I was still trying to find the right preventive so that was just way too long. It’s too bad because I really liked her.

Even an advocate can choose the wrong doctor.

Doctor #3 was as part of a neurological group with specialties in MS, Headache Disorders, and Sleep Disorders.  I had read some publications by one of his colleagues and it sounded like he knew what he was doing. Unfortunately he was not available, so I was assigned to Doctor #3. I did see some improvement when he diagnosed me with Cervicogenic Headaches and prescribed 12 weeks of physical therapy. The Myofascial Release therapy plus exercises at home helped my neck and shoulders yet the Migraine attacks kept coming.

While under his care, I experienced strange symptoms that could have been the sign of Hemiplegic Migraine or Migraine with Brainstem Aura. The symptoms could have also been the early signs of a stroke. The ER determined it was a Migraine attack and encouraged me to tell my neurologist. When I reported it to Doctor #3, he replied, “Yeah, those are 'complicated migraines.' Now you know you can get those, too.” That was it. He didn’t look up from his notes or ask any follow-up questions. Alarm bells went off in my head. “Complicated migraine” wasn’t an accurate diagnosis. I knew I was in the wrong place. I could hear Teri Robert stewing, “You have got to be kidding! Honey, you need to fire that guy.” I moved on not long after that incident.

Doctor #3 also told me I wasn’t a candidate for Botox because I failed the Trigger Site Release surgery diagnostic trial. When his treatment didn’t totally fix the problem, I got blank stares and a referral to pain management. I did my research and still ended up at a headache clinic with a strong bias about the “cause” of migraine.

Coming home

Doctor #4 found me in the hospital with uncontrollable Cluster Headache attacks. After years of searching, I rediscovered my very first headache specialist during that hospital stay. It was very late at night when he stopped by my room. Instantly he recognized me and asked where I had been for so many years. It was like coming home after a long journey.

I am so grateful to all of these doctors. They are all good doctors, just not right for me.

  • Doctor #1 turned me down for surgery.
  • Doctor #2 was too busy to give me the care I needed.
  • Doctor #3 was too focused on the one solution his clinic was selling.
  • Doctor #4 was JUST RIGHT…especially because he referred me out to…
  • Doctor #5 who provides me with Botox injections.

Guess what’s keeping my headache disorders under control?
Botox reduced my attacks by 75%.

Any other time, I might have settled for one of them or stopped going altogether. I kept on trying because I had an advocate who kept reminding me that I deserved better. It took me 33 years to get serious about treating Migraine and another 6 years to find the right doctor. Please don’t wait that long to find the doctor who’s right for you.

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