When you have a significant life change in your health you try to find the right people to help you get answers. Well let me tell ya something, that is easier said then done.
When we started out in the hospital I was assigned a neurologist. You think at a hospital they would have the best of the best….well that wasn’t the case for me. He ordered me to be on 3000mg of Keppra a day. Seizure medicine is made to slow your brain down, and being on 3000mg a day my brain was going about as fast as a turtle runs. When I went to my first appointment at his office we noticed that everyone had this look on their face of not being able to register what was going on and people were falling asleep – a true sign of being on way too much medication. After that first visit I never went back.
I was referred to a primary care dr (the one that ran the entire blood panel on me), and he referred me to a new neurologist to see if he could help get things going in the right direction. When I met with Chris (the neurologist) he was in shock I was on as much Keppra as I was. He quickly knocked me down to 300mg a day. This was a game changer. I could carry on a conversation with someone instead of it being a one sided conversation where I just stared at them. Chris was able to give some insight to my seizures, but there is so little research that there wasn’t much more he could give me.
Last year I became a regular with the hospital. I ended up having a seizure in February, March, May, and October. In April I ended up with a kidney stone which is also something that is common with someone that has epilepsy. The seizure that was in October actually happened on a cruise ship. (Side note: if you ever get sick on a cruise ship those people treat you like you are royalty.) When I went into the hospital for the seizure in May the people in the ER actually said “oh I remember you”. Not what you really want to be known for. When all of these were happening that is when the drs started to believe that I had catamenial seizures. It was a fantastic day to know we were all on the same page…finally!
There had also been talk about my thyroid being out of whack, and helping wreck havoc on my health. My sister had told me about a dr that her mother-in-law was going to for her thyroid, and how much she enjoyed going to him. So I went to see him to see if my thyroid was also another cause of the seizures. Come to find out I only had a few nodules, but it wasn’t anything to worry about. We ended up talking a little bit longer, and he referred me to a new gynecologist.
Let me tell you, I hit the lottery when it came to this gynecologist. I got to meet her in January, and when I told her I had catamenial seizures she said the magical words I had longed to hear, “I know all about those. I have 5 or 6 patients that have those same types of seizures.” I could have hugged her (and I’m not a hugger). She was the one that told me that everyone has a seizure threshold, and when my hormones decide to go a little haywire I slip under that threshold and it produces a seizure. Due to her knowing the side of hormones she has been very helpful, and has answered every crazy question I have had when it comes to pregnancy and seizures. She has been a true blessing.
I have been to countless doctors to get answers, and I have finally gotten to my core group of doctors that I trust. I still don’t have a primary care doctor, but the doctors that I do have take really good care of me.