Much has happened these past two weeks. I have not been able to write because my body has had a reaction to a medication we decided to try for seizures. I have never felt good on seizure medication and for many years, over 20 at least, I had about 1 or 2 seizures each month. But for the past two years, they have been getting stronger and more often, so we talked to my neurologist again who wanted us to try Carbatrol. It seemed fine at first. I felt pretty normal. She had us start on a really small dose and increased it. Even then I felt pretty good until about week 5. It was the worst I have felt in many months.
I got so afraid and had so much breath holding and hyperventilating that I could hardly breathe all day. I became so angry that I couldn’t be around people. I was so agitated that I couldn’t sit still. I felt like I wanted to leave my body, but I couldn’t! I only peace I had was when I was sleeping. I couldn’t even urinate. It stopped that too. I was afraid to be around people because my arms were swinging and I couldn’t stop chewing or grabbing. I even remember throwing myself backwards. It has been horrible for me, my Mom and Gregg. My Mom tried everything thinking that I was just having some bad Rett days, but then over last weekend, she did some more research on Carbatrol and found out that what was happening to me was all of the side effects of Carbatrol!! With Rett Syndrome, all the weaknesses I already had were made so much worse by that seizure medication.
I’m being weaned off of it now and the anti-anxiety medication the Dr gave me to overcome the side effects of Carbatrol. I have never felt so bad on a medication in my life as I did the past two weeks. I’m so glad to know that I was not going crazy and that my thoughts about suicide were not me, but another side effect of that drug. I have always been open about my personal struggles with Rett Syndrome on my blog, and I hope this helps others who are wondering if their daughters are affected by the medications they are on. My body is very sensitive and I feel overwhelmed that the alternatives to seizure medications is seizures for me. We have tried everything we have ever been told to do to stop them without drugs, and so far, no luck. But I am praying along with some other friends, that we will find the answers, because a life feeling like I did, is no life at all.