The Moment I Realized I Wasn't Getting Better
The first Headache specialist I saw was convinced botox was the answer to all of my problems. I had already found a lot of relief for the pain with some of my other treatments with other doctors, but the stroke-like symptoms were still extremely debilitating and she believed it was the final thing I needed to treat the rest of my symptoms and help me get my life back. But before insurance will cover botox you have to prove that you have failed 2 other treatments. So I spent the summer of 2012 taking meds I had already taken before even if I had had bad side effects, like with Topamax.
The first time I took it was back in 2010 when I saw my first neurologist. She thought I had epilepsy and that my hemiplegic migraine attacks were seizures. I was given the generic brand topiramate, which I had a bad reaction to and the side effects looked more like seizures than my actual symptoms. Plus it made me gain a shit ton of weight, made my cognitive symptoms worse, and caused my hair to fall out.So when I found out I had to try it again before getting botox I was pissed. This time I was prescribed Topamax. Within 30 minutes I lost my vision for over 2 hours. We called my doctor who said to keep trying and track my symptoms. After a few days I refused to keep putting myself through this and swore I would never take it again. I don’t think some doctors or insurance companies understand how traumatizing it is to be forced to take meds you know are going to hurt you more just to prove to someone who doesn’t even know you or your pain that the treatment your doctor prescribed is necessary.
After this we kept appealing the denials for botox and eventually got it approved much faster than we thought. Typically there are 31 injections sites in 7 areas along the head and neck. I got way more than 31 and had Botox injected all over my forehead, sides of my head, top and back of my scalp and down my neck and shoulders. She would push two areas and ask which hurt worse, then put multiple injections in both of those areas. She told me if it works I’ll have flu-like symptoms for a few days, then I should start having relief in about 2 weeks.
The first few days my head was so sore it hurt to brush my hair. But then I got my flu-like symptoms. I don’t think I’ve ever been so happy to feel so shitty. I spent the next two weeks while I was waiting for the relief planning my future (stupid, I know), and applying to go to acting school in New York in January.
Then, one day I was sitting on the couch and this pain hit the back, right side of my head, almost as if I had been shot. Immediately the stroke symptoms started, but for the first time ever I was getting them on the right side. The next 3 months were a blur. I started having new symptoms and triggers. I couldn’t be around heavy scents, perfumes, or certain foods while they were being cooked. Sounds and smells never bothered me before and now every little sound triggered me. It was so severe one of my doctors thought I had developed a sensory processing disorder. I had horrible facial pain that I had never had before & ended up being diagnosed with trigeminal neuralgia a few months later. My hemiplegic migraines were now happening on the right side and have been right sided ever since. Even the treatments I had been doing with other doctors weren’t working like they used to. I told my Headache specialist and she told me to give it time to work properly.
I don’t remember much from those 3 months other than horrible pain. I had an appointment with my Headache specialist and told her I felt better now that the botox was wearing off and asked if there was anything else we could try because I didn’t think another round would be good. She agreed and fired me as her patient, saying botox was her specialty and if it didn’t work there was nothing else she could do to help me. I asked her what I was supposed to do, because even though it had worn off everything was different. We were basically back at the beginning. She said she didn’t know but would give me a referral to UWMC’s Headache Center. They unfortunately had a 6-8 month wait list.
I felt like all the progress I had made over the last three years was gone. I had so many new symptoms and triggers, as well as new conditions as a result of the horrible reaction I had to the Botox. This was probably the first time my pain ever made me suicidal. This was also the first time I was hit with the realization that I might never get better and would spend the rest of my life sick and in pain.