“I’m so sorry to read on your blog about the setbacks… It sounds like you’re in survival mode,” my friend J. texted after I posted Gastroenterologist, Adderall, and Migraine Status on Nov. 2.
I wonder how she got that. I’m doing pretty well right now, I thought. A week later: J. was totally right. I’m barely hanging on.
I’d written about how great I felt on Adderall and was hoping the effects of were not dwindling. They were. After a three-week energy boost, I returned to about 75% of where I was before the June infusions. This might seem disappointing, but it was a huge improvement. (The fatigue was so severe in August and September that I almost bought a walker to get around the house. Walking to the dining table took so much energy that I ate on the kitchen floor. I tripped over the slight ridge in a slate floor tile because couldn’t lift my foot high enough to clear it. I was living with crippling fatigue, yet the severity was still nearly unfathomable. So, even though I was no longer super-charged, I was pretty happy with the result.)
The Adderall also keeps my pain from getting above a 4 most of the time, even during a migraine attack. I’m grateful for this, but the pain has been the least of my migraine woes for the last couple years. (I never thought I’d say that!) Even with Adderall, I am severely fatigued during an attack. The fatigue continues to be even more disabling for me than pain at a 6 or below.
This up-and-down cycle of fatigue (plus cognitive dysfunction) has been going on since early November. I can’t predict how severe the migraine attack that follows eating will be, even when it’s a food I eat frequently. I never know how much energy I’ll have when I wake up or how long it will last. If a few good days follow tweaking something in my regimen (like increasing my magnesium or Adderall), I’ll think I’ve figured it out… then the benefits will dissipate.
I was eager to start a ketogenic diet January 3. It’s a high-fat, low-carb diet that’s used to treat epilepsy in children. (It’s also a trendy diet for body builders and people wanting to lose weight, but the version for epilepsy is a lot higher fat and lower carbohydrate.) The ketogenic diet seemed like a drastic change that could really make a difference. I saw no improvement. As January wore on, the migraine attacks seemed to get even worse. I was demoralized and panicked. The ketogenic diet was my trump card; I had no idea what to try next.
Ten days ago, the dietitian changed my meal plan to increase the fat and decrease the carbs. It’s brought some remarkable, but sporadic, improvement. I still have to take an Amerge and two Midrin every time I eat, but some days I barely notice the migraine at all. Then I’ll do something reckless, like try a vitamin D supplement(!), and have a downturn for several days. I’ve felt really good on about half of the past 10 days. Yet the progress feels substantial enough to have restored my hope.
I’m back to feeling like maybe the ketogenic diet will make a difference. The dietitian said it can take three months for the metabolism to fully shift, so I am hopeful more progress is ahead. Also, there’s room to increase the fat and decrease the carbs in my diet, which could mean even greater improvement. The fatigue is a drag and I wish I could think more clearly, but I’m optimistic that I’m on the right track.
The last year has frayed my optimism, leaving me with tatters that I feared could not be rewoven. Slowly, slowly I’m finding the threads and knitting them back together. I can’t say I’m out of survival mode, but I no longer feel like I’m in constant crisis. With my hope and optimism returning, I feel more able to cope with the setbacks that are sure to come.