Minding The Gap
My migraine disease is cyclical. It’s been awhile since I’ve had a run this good, pain wise, and I always hesitate to talk about it, because of the whole jinxing thing. I bet a lot of you know what I mean; as soon as you breathe a word of “Wow, I’ve been doing really well lately,” you wake up with a killer migraine the next morning. I’ve had migraines, but they are easily treated. Some days, I have no pain at all or just very mild pain… and a few times, I’ve been treated to this reprieve several days in a row. The cumulative trigger stacking that was going on at the beginning of the month seems to have dissolved, allowing me to be less vigilant about my food and sleep patterns. In fact, right now it’s 1:15 am and I’m re-watching season five of LOST with John and eating Toffifay chocolate and hazelnut candy.
Not holding my breath
This easing of my symptoms has been going on for about two weeks. I do know whether I talk about it or not, in time, either tomorrow or next week, my typical near daily migraine attacks will return with a vengeance, and having gotten used to a real life again, I will have a particularly hard time accepting the impact of their return. But there’s something else. Every time this happens, when I have what I think of as a migraine gap, my brain seems to compensate by emptying of serotonin, or something, so that I end up getting horribly depressed. I’m not in pain, so you’d think I would be up and doing fun stuff, and organizing and cleaning my house, and catching up on time with John and the girls. But no. I’m in bed ANYWAY, because I’m depressed.
Recalling the first migraine gap
The first time I can remember this phenomenon occurring was around 2002, after my first Botox treatment, when it was still being studied for migraine and not yet FDA approved for it. I was thirty years old and the only way I could get the treatment was for my parents to pay for it, out of pocket. And it worked. At the time, I was on the verge of being chronic; very heavy episodic is what I would call it. I was still working full time at the coffee shop, but missing a lot of shifts. Married before kids, with migraine attacks hitting constantly two to three days per week. Every six to nine months I was hospitalized to clear my system and reset myself; several other times per year I needed IV fluids and meds in the ER.
The short-lived reprieve
After the Botox, it was like I could finally breathe. Like I had been living underground, and could finally walk in the sunlight. I laughed at the frozen nature of my forehead, at how my eyebrows couldn’t raise anymore. I spent more time with friends, rediscovered my husband as a partner rather than a caregiver. I was free. And then, soon, darkness descended again, because some sort of dirty trick of my migraine brain had to cause suffering. I became very, very anxious and sad. I was unmotivated and lost, and became as paralyzed by the depression as I had been by the pain.
We had theories. I thought maybe after living for 20 years with a constant companion of migraine symptoms, in their absence I didn’t know what to do with myself. Time that had been spent in bed, in multiple dark rooms, sedated and sleeping or wracked with pain and crying, vomiting or meditating, was suddenly wide open and empty. I didn’t know how to live that kind of life, a real life, but yet to me, “real” was migraine disease. In its absence I was confused. I went back to bed, the comfortable refuge where I’d spent half my life. And on top of the confusion and depression I felt guilt, because my head and eyes felt clear. Why couldn’t I enjoy the reprieve?
Trained to wait for the other shoe to drop
Another theory was the fact that I knew it would only be a reprieve, temporary, and didn’t want to learn to enjoy it. Maybe I could get Botox every three months for the rest of my life, and be essentially “cured,” but every previous treatment that had given me this much relief had stopped working. Two come to mind, both of them medications now removed from the market. The first, when I was in high school, was the odd combination medication called Bellergal-S, which contained, of all things, the poisonous in large doses belladonna (which has become so controversial recently in Hyland’s teething tablets), ergotamine, and a barbiturate. My neurologist at the time had me take that for three weeks, preventatively, and Anaprox, a prescription NSAID, for three weeks and keep rotating that way. It worked for six months and then didn’t anymore. The other was Sansert, or methysergide, which was extremely controversial in that it was an ergot similar to the formula of LSD and also could cause heart problems severe enough that I had to take a break from it every few months and have tests done. In fact I had to find a new neurologist who would consent to allow me to continue on it long term. But Sansert stopped working too. I thought of this as the migraine finding a way. The migraine was smarter than the medicine. It would find a new route. And I knew it was very likely to find a way around the Botox too.
Or, maybe it’s all chemical
The last theory I had was that migraine disease (not that we called it that at the time) never goes away. If the pain mechanism, the nerves or proteins which prompted attacks, was stopped, then the illness would manifest itself in another way, attack my brain not with physical pain but emotional pain. The activity in my brain which had been so oversensitive and reactive for twenty years suddenly lay dormant, and it wasn’t happy being quiet and still. Whether it is serotonin, or dopamine, or just electrical impulses, they wanted to be doing something. And so they did, and the result was depression.
After several weeks, back in 2002, the depression faded and I enjoyed some relatively pain and depression free time. My next Botox treatment worked less well, though I tried to remain optimistic. The third one left me with bruises in my forehead and no relief at all. Ten years later, with insurance covering it this time, I still would not get any relief. I tried three Botox treatments, three months apart, and nothing. The third time, I had side effects and ended up needing physical therapy for my neck to return to normal.
Enjoying the small victories
And now, involved in my second CGRP trial, I am enjoying my third week of the absence of attacks. And though there are circumstances going on which would cause depression in the anyone even slightly prone to it, this feels like “migraine gap” depression. And, in fact, the day after writing most of this article and fighting the pull of the bed to stay up late to watch TV with John, I did get a severe migraine. I lost two days to the dark room and used all of my new 3 mg sumatriptan injections, but did not have to go to the ER even though it’s been a month and it felt like the same type of migraine that proved so hard to break last time. A small victory, but let this serve as an impetus for me, in the future, to mind the gap. And when that depression eases up, a migraine may be imminent. And I guess I need to continue to mind the jinx as well. And sugar and sleep patterns.
Have any of you noticed this phenomenon when your migraines lessen? Feel free to let us know in the comments.