I stood in tree pose at yoga, my arms raised in a V above my head, and nearly cried tears of joy. “I am strong,” I thought. “I am alive.”
No words suffice as I try to describe that moment. I keep typing and deleting, typing and deleting. My thinking is huge, philosophical, emotional.
“When you’re going through hell, keep going.” That Winston Churchill quotation has gotten me through many years and countless migraine attacks. I haven’t had to apply it to my life in a year. I call that remission from hell and officially declare that I am no longer engulfed in flames.
I still have constant head pain and migraine attacks more days than not. Fatigue, brain fog and depression still nag at me. I may one day return to symptoms as severe as during The Worst Year of My Life. I may, in fact, return to hell. But I’m not there right now.
Acute medications are working. The diet is irritatingly restrictive, but combined with DAO, it means I no longer get a migraine every time I eat. I can even occasionally choose to eat foods that will trigger a migraine, then stop it with a triptan and naproxen.
It’s not perfect. I’m not cured. But I can breathe.
My life feels wide open.
Despite my terrible experience last week, most of my experiences with doctors have been excellent. After such a negative post, I want to highlight some of the great doctors I’ve encountered.
There’s the doctor who held my hand, looked me in the eye and told me she’d never give up on me. That was nearly five years ago and I still tear up when I think of it. Her kindness and sincere desire to help were a beacon of hope when I was at rock bottom.
When I moved back to Phoenix, I saw a new headache specialist who spent two hours listening to my migraine history. Two. Hours. He seemed genuinely interested and didn’t talk about a treatment plan until he knew my entire story. He helped me piece together my history and see that my childhood illnesses were very likely migraine attacks with little or no head pain. The treatment plan he came up with was comprehensive and addressed all of my needs.
For a while I was seeing my current headache specialist and another concurrently. The secondary specialist started me on Lyrica and it caused me to have suicidal thoughts. That was the last straw for anticonvulsants for me, but that doctor still pushed me to try Topamax. My current specialist understood my reluctance and has never again suggested I try an anticonvulsant.
When I told my headache specialist how helpful DAO has been for me, he was thrilled for me. He didn’t care that it’s not a scientifically proven treatment, nor did he care that he wasn’t the one to tell me about the treatment, he was just happy that I’ve finally found some relief.
Those are the some of the biggest moments, but there are so many little things that add up to feeling like I’m well cared for:
- Being listened to
- Acknowledgement that my symptoms are both real and debilitating
- Being honest when they’ve reached the limits of their knowledge
- Not telling me they know exactly the treatment that will do the trick
- Not encouraging me to retry medications that I’ve had severe side effects from
- Asking if I want to have children (I don’t, but if I did, it would affect my treatment in numerous ways)
- Having respect for my writing about migraine (they don’t have to read it, but I do want them to acknowledge there’s value in it)
Last week’s doctor failed on every one of those counts (and I actually wrote the list months ago), but most of the doctors I’ve seen shine on all points. I’m tremendously thankful for the incredible care I’ve received from headache specialists.
Worried emails come in whenever I’m quiet for long, so here’s a brief update. My mood is pretty good and my migraines have been a bit better (though I have an ugly one right now). Wellbutrin is still making me dizzy when I work on the computer, so I’m not writing much. I’ve chugged a Tolerex with breakfast the last two days, which seems to have kept the dizziness at bay. My fingers are crossed that I’ll be fully functional again soon.
I’m now 38 and had a lovely, low-migraine birthday (though Hart had a migraine that day!). I decided to indulge in dinner out and homemade yellow cake with buttercream frosting. A migraine followed, but it was mild and worth it.
If you’re looking for new writing from me, Migraine.com is a good place to check. They have a backlog of articles from me that they publish as needed and usually post one new one from me each week. Here are some recently published posts:
I apologize for letting your comments languish; I hope to reply this week. And I hope to get at least one new post up this week. I hope you’re doing as well as possible!
After posting Food and Migraine Frustrations: I’m All Out of Cope, I finally looked at all the pieces that were frustrating me (and how I was overreacting to everything and felt helpless) and realized they added up to depression. I was still waffling until the day I woke up and didn’t want to get out of bed. Then I knew it was time to increase my Wellbutrin.
I started feeling better almost immediately. It’s highly unlikely that the Wellbutrin made such a difference so fast, but recognizing what was happening and taking steps to change it was a big relief. I’m also seeing some improvement in my diet and pinpointing the foods (and possibly a supplement) that have been problematic. And one day out of every four is (usually) trigger-free.
Unfortunately, I’m not getting enough calories to support 300 mg of Wellbutrin without side effects. Like happened when I was on Tolerex in December, I get dizzy looking down or working at the computer. Once again, it’s keeping me from working much.
I’m still frustrated, but no longer feel helpless or overwhelmed. I’m taking each hour as it comes and trusting I’ll figure this out eventually. (That sounds so trite, but it’s totally true.) I’m not sure what “this” looks like, how long it will take or how many migraines a week (or day) it will mean. And that’s OK.
I’m glad I published Full of Hope About the Future of Migraine Treatment Wednesday because my hope has been stretched thin every day since then. The DAO is still working great, but I keep developing reactions (read: migraines) to foods that were once OK. If I could still take DAO eat the same 10 foods I ate this spring, I have no doubt I’d still be feeling great. But now over half of those are migraine triggers.
I’m definitely doing better than I was pre-DAO, especially on days 3 and 4 of the rotation diet, but I’m still having at least one migraine, usually two or three, every day. Beyond frustration with having more migraines, I want to know why in the world my body thinks a migraine is the appropriate reaction to most foods I consume — and why something can be OK for months, then becomes a migraine trigger every single time i eat it after that.
I’m not looking suggestions in writing this post, I just need to vent. I’m in the process of scheduling with my dietician, though I expect more speculation and dietary experiments rather than answers. I’m frustrated and exhausted and so sick of not being able to eat normal food. And really not happy to once again be considering Tolerex for some portion of my calories/nutrition because I know I’d feel great if I just didn’t eat.
I’m trying to cope and not doing so very successfully. I apologize for still not getting to blog comments following my time off. I will as soon as I have a little cope to spare.
(“All out of cope” is a phrase I stole from Hart. Isn’t it great?)