Tapering off Topomax

Today is the seventh day of my eight week trial to taper off the generic form of the drug Topomax, called Topiramate.

The reason I am tapering off of Topiramate is because I want to get pregnant sometime next year. Topiramate (like most Epilepsy drugs) is a class C drug. “Class C” means there are not very good studies related to its ingestion and pregnancy. What studies are available show that Topiramate can lead to a greater incidence of Spinabifida and Cleft Palate (incidence increasing from 1% in general population to 2% to women taking anti-seizure medications). If a woman takes plenty of Folic Acid, she should be able to keep these birth defects at bay. However, there have been no studies done related to long term learning problems relative to Topiramate or any other Epilepsy drug. To be safe, I prefer to see whether I can face a pregnancy, at least my first trimester (when the baby's brain, nervous system and major organs are formed) without the assistance of Topiramate. Neurologists are split about this. Some believe that a woman should stay on her epilepsy drug no matter what because a seizure can lead to miscarriage and other complications (like horrible learning disabilities), while others believe that it is good to try to go through the first trimester off of drugs. Right now I am seeing whether a drug-free pregnancy is an option for me.

I am well regulated on Topiramate when I take 50MG twice a day (in the morning and at bedtime). When I first started taking Topiramate I experienced side-effects. I had terrible word recall and, in general, felt a little dumb. Also my hands and feet were often attacked by pins and needles throughout the day. These two side-effects went away over time (probably two months). One side effect that has stayed is a general creepy crawly feeling on my skin that subsides drastically with supplements of Potassium and Magnesium (if I am adamant about taking them). Also, when I started taking Topiramate my partial seizure symptoms all moved toward the "Alice in Wonderland" variety. These types of partial seizures are characterized, for me, by my hands feeling like "two big balloons" (to quote Pink Floyd). Actually, my hands feel, at times, GIGANTIC and extraordinarily heavy. I experience this feeling most commonly in the car, either when I am driving or as a passenger. One time, when I was very tired after staying up too late, this "big hands" feeling was accompanied by the feeling of time speeding up real fast and my head also feeling really large and heavy. There are several other times when time has sped up and/or my head has felt very large and heavy accompanied by big hands, but it hasn't lasted very long, maybe only a few seconds. Speaking when time speeds up is other-worldly and intense.

Another big reason I am tapering off Topiramate is because I don’t know my seizure disorder off of drugs. After my first big seizure I was put on drugs. I had not had a seizure that I recall before this first big seizure. Seizure medications all have terrible side effects; neurologists downplay these because the drugs are their greatest tools. One thing that I’ve heard my two neurologists say but not repeat, is that some of the potential side-effects are seizures. I’ve been on Oxcarbazepine, Kepra, Gabapentin and finally Topiramate. I developed terrible allergic rashes to Oxcarbazepine and Kepra on my throat and they did not control my seizures - or they caused seizures. Kepra made me suicidal one evening, when I was really happy otherwise! Gabapentin needs to be taken five times a day (impossible to maintain) and backs up my digestion terribly. Topiramate may not be perfect, but it works well for me. I welcomed the drugs willingly because, in order to drive again (and regain my independence) I had to prove to the state that I was well maintained and seizure free on the right drug. Now that I know that Topiramate works for this purpose, I am tapering off of it to see if no drugs work just as well. As I taper off, my husband will have to drive me around (because epilepsy and cars don’t dance together well). If I have a big seizure off the drug, I will have to go back on it. My neurologist is aware of my activity. He wrote a prescription to go off the Topiramate. He knows I will never be confident and will always be in denial of my disorder if I do not do this for myself.

So here it goes. My big experiment. If I remain seizure free:
• In eight weeks I will find out how I feel off the drug. I will finally know what kinds of seizures I actually have uninfluenced by drugs
• In three months I will find out whether I actually have an active partial seizure disorder-or not
• In six months, if I am still seizure free, I will be able to prove to the state that I can drive without being on drugs.
• In six months, if I am still seizure free, I may be able to plan a drug free pregnancy

My current taper, for the first two weeks, will be 50MG of Topiramate in the AM, and 25MG of Topiramate in the PM.

I couldn’t do this without help from my amazing husband, Terry.