Breaking the Migraine Cycle, Both Medically and Emotionally

There’s a state that migraineurs know that’s an in-between of being functional and non-functional, where you’re alive, but not completely there. You’re able to complete small tasks and make small talk, but still are forgetful and can’t fully focus. It’s almost like there’s a haze of brain fog surrounding you and no matter how much you rest and sleep and do everything you’re supposed to do, you don’t get better.

For the past couple of weeks, I’ve been in between this half-functional state and full-blown migraine episodes. My to-do lists became an ever-growing mountain of tasks that no matter how hard I tried I couldn’t do. My meds weren’t fully stopping the migraines, and when they did stop, I’m not sure I actually recovered. I ended up having to make a choice this past week: do I get hospitalized or do I get an infusion and do the DHE 45 protocol of three shots a day for five days to break the cycle? It was a choice I haven’t had to make in almost two years. The last time I went to an ER for a migraine was the beginning of my freshman year in fall of 2015, and a couple months after that I had to do the DHE 45 protocol so I wouldn’t be hospitalized. But this time was different. This time was terrifying because it reminded me of what I had gone through in high school. I was reminded of how helpless I actually was in dealing with my illness. I can be doing everything “right” and taking care of myself, but to a certain extent, that doesn’t matter. I have a debilitating illness that affects my life and no matter what happens or how healthy I’ve been, episodes like this are a harsh reminder that there will always be times in my life where I can’t control what my body is doing.

I ultimately decided to go in for the infusion and continue the DHE protocol at home. Infusions are never easy, and this was no exception. For the first time in my life, I was alone when I received the treatment. My parents were at home across the country, waiting to hear if I was being hospitalized and whether they should just get on a plane to be with me anyway. I always had someone be there with me to talk to me when the IV was placed, to reassure me when the pain of the medication hit my veins, telling me that everything would be OK and alright, even if it didn’t feel like it now. I realized it had been two years since I had an IV placed, my last one was in February of 2016 for my blood clot. When I got back from the infusion, I slept for six and a half hours straight, not knowing if I would have to come back in a day for a nerve block if the infusion didn’t work, and if that didn’t work I would definitely have to be hospitalized. Luckily, I didn’t. I opted for the DHE 45 protocol instead, because I’d much rather be giving myself shots than staying in the hospital for multiple days.

It’s gotten easier to give myself the DHE shots over the years, but it’s a special type of hell to have to do them three times a day. DHE is nothing short of a miracle drug for me, it has been the only abortive that has broken cycles for me. But it leaves bruises, the only physical element of my illness. It leaves tender spots so that by the end of the five days, I may be clear from migraines but my legs are left sore and bruised. In a way, they are my battle scars. They are the only things I have to prove that what I go through is real to the outside world, the only physical reminder. Yet bruises fade, just as these episodes do. At the end of the day, I will be OK. At least, that’s what I’ve been telling myself. I’m finally clear but I am still very much dealing with the aftermath of this, both emotionally and physically.

Throughout this whole ordeal I’ve been praying that I’ll be able to access the new CRGP antibody drugs once they’re released (hopefully in May and more on that in another post), so that maybe one day, I could have a healthy life. It’s hard because I once again realized that I “looked” functional. I was taking a test when I got a full blown migraine and my proctor struggled to figure out what was wrong with me because I looked fine but was having trouble putting sentences together. I looked fine, but I wasn’t. And that’s just the thing, I’m fine until I’m not. But those cycles of not being OK have been some of the most terrifying experiences of my life. When I am in those cycles, there is no foreseeable end. It is all pain, anxiety and fear. When I’m out of these cycles, I can have some more clarity about what’s going on, but it doesn’t make the heightened emotions that I feel much better. These pangs of loneliness, shame and fear come back when I am feeling OK, a lingering reminder of the times I am not doing well.

I’ve been in love with songs that make feel like everything is OK when it feels like everything isn’t. The song “Happiness Is Not a Place” by The Wind and the Wave really highlighted that for me. The chorus goes:

“And don’t you happiness is not a place—It’s the road you take—And who you choose to walk it with—And the grass ain’t always greener on the other side—It’s OK—But I wish it was easy like it sounds—Just believe one day—And your walls start coming down—Trust me things are gonna be alright.”

To me, it’s a reminder of how our struggle does not define us, but it shapes our lives. That no matter how difficult, frustrating or painful things get, things will turn out OK. I say this for all of you as much as I do for myself. As for myself, I’m going to breathe during these next couple of weeks. I am grateful for the resilience of my body and my support systems. I’m going to breathe and start chipping away at my mountainous to-do list. Most importantly, I’m not going to give into those feelings that have been wearing down on me. I’m going to be looking towards the light at the end of the tunnel, because trust me, things are going to be alright.