I went to the doctor last Thursday to see if my headaches are from a medicine I'm on to control the cysts. The doctor said that is very possible, but we aren't sure. I went from 10 micrograms to 35 while I was in Nevada and couldn't get the cysts under control. She said for most people 20 is high and I was on 35. So we took the medicine down to 30 because we aren't comfortable going lower because of the cysts coming back. It will take 3-4 weeks to know if it was the medicine causing the headaches.
As we were talking, we were reminded about how much my body went through leading up to the stay in ICU. For at least 5 days, my body was all tensed and I had dystonia.
The Dystonia Medical Research Foundation says "Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures."
I went to the ER for 3 days in a row because it kept coming back. Then I started having the seizures and they couldn't get them stopped for 6 hours in the ER and ICU. They got them mostly under control in the ICU but there were still little breakthrough ones. So for almost a week, my body was tensed up really badly. My jaw was clenched too.
Since then, we have done nothing to help relax any of the muscles. This could also be contributing to the headaches that won't go away. All my muscles are so tight and knotted that I'm surprised that we haven't thought of this earlier! When muscles go through that much trauma and pain, they aren't just going to fix themselves.
Tuesday I went for a massage and they worked on my neck, jaw, back, and head. Oh my. It hurt so bad! Whoever said massages are relaxing are wrong! They said that it's going to take 4-5 months to fix everything. The scoliosis doesn't help the problem. We are having to completely retrain my muscles so they know that it's not okay to tense up. That's why it will take 4-5 months is because we have to reprogram them. When we told them what kind of reaction I had that landed me in the ER and ICU, the massage therapist knew exactly what we need to do. He explained about retraining the muscles.
So, it could be a combination of medicine and muscle problems causing the headaches. It's going to take a while to know. Hopefully they will start to get better as we release the tension and lower the dose of medicine.