Week Two — Chronic Migraine and Botox Diary
The next Monday — the first day of week number two — brought even bigger changes.
Unexpected side effects
I got up from bed in the morning as usual, going straight to my office and the computer to write until breakfast time. In the morning I felt normal except for the amused and occasional prodding of my motionless forehead just to see if it was still affected.
At about 1:30 in the afternoon I begin to feel fatigued around the base of my neck and my left shoulder. The side of my head began to burn, just a little as did a spot between my shoulder blade and the base of my neck. I recognized the feeling as the same one I used to feel when lifting weights as an athlete. When lifting weights, I always wanted that last rep to be the last one my body could physically push out, so I would continue until I physically failed. When that happens, the muscles are fatigued to the point that they scream at you for relief. They quiver and burn and pull. It’s a feeling you don’t forget, and I was feeling it that afternoon.
I ignored my body, as a good athlete learns to do early on in their lives. I thought, *oops* I’m going to have some issues with that left shoulder I guess. It’s weaker than we thought. No worries. I’ll push through it. My muscles will strengthen over a little time and I’ll be okay. It’s just a bump in the road.
I know Botox injection placement and response is a process that can take several cycles to perfect. Each patient is an individual with individual needs and idiosyncrasies. Apparently I was no different.
I forgot something very important however. My dystonia.
Dystonia is a neurological movement disorder in which the basal ganglia of the brain doesn’t do a very good job of controlling or turning off movement. My basal ganglia was damaged by medicine I took to try to abort a case of status Migrainosus several years ago.
For me, dystonia results in spasms, twisting and posturing of body parts which is beyond my control. I’m lucky. My dystonia isn’t serious once we learned how to deal with it. I keep diazepam on hand for days when spasms get out of control, and have learned to read my body and not push it beyond what is comfortable. Exercise, or pushing my body physically is when I will have problems with my dystonia the most, because I’m using muscles that eventually my brain forgets to turn off.
When that happens, my muscles began to spasm. Not a charlie horse kind of muscle cramp most people have had at one time or other. A severe dystonic spasm can be strong enough to tear tissue, break bone, and is immensely painful. It doesn’t respond to heat or massage or anything typical muscle spasms respond to because the dysfunction isn’t in the muscles itself, but the brain. And worse, it tends to spread, beginning in one area of the body and spreading to others, sometimes becoming a body-wide fight between muscle groups, pulling and twisting my body into positions it was never meant to go.
Thankfully we got the diazepam going, little bit by little bit until we found the right dosage and the spasms became tolerable. They didn’t spread past my shoulder, neck and back.
Unfortunately, the spasms triggered a monster Migraine, complete with trigeminal and glossopharyngeal neuralgia, which is doctor-speak for shooting pains across my face, eyeballs, in my ear and down the inside of my throat. I do not recommend this type of pain for anyone.
I was foolish. I ignored the signs my body was giving me, telling me to rest. This is all new territory for me, and I don’t know anyone else with the same experiences from which I can learn, so I suppose I’ll be making mistakes along the way. This one was a simple lesson, yet big one, and made an impression.
Today, I have gotten control over my shoulder for the most part. I recognize that it is weak right now, and am working to strengthen it, v-e-r-y slowly. My posture on the left side has changed and is now something I have to consciously pay attention to and fix throughout the day. When I feel fatigued, I go lie down. This interrupts my ability to work like I am accustomed to, but is necessary for a while and seems to be much better even after this short a period. I don’t wait for spasms to get bad. If they occur, I take my diazepam in tiny doses so I don’t end up needing them in large doses again. Right now, I am happy with my progress and seem to be doing well.
Post script: This is a diary. You can’t skip to the end and see what happens until it’s written. Yet. I do want patients who may be frightened by my experience so far to stop and think about it carefully. I am writing about this so you can see how I deal with MY experience, and you’ll see as we go along how I work to fix the issues I have that might make others who don’t know their options, consider quitting treatment. My goal is to empower you so that you not only know some of the possibilities from a patient’s perspective, but have a chance to prepare yourself for potential side effects and other issues before beginning treatment. Knowledge is power! I will not stop the treatment before I have trialed it all the way to the end. For better, or for worse. I have extenuating circumstances and a set of unusual comorbidities. Your experience will be different. If you have questions or concerns, please comment below so we can talk about them. Let’s use this space to get good discussion going that will be helpful to others considering this important and potentially life changing treatment!