Dealing with epilepsy

My medicine so far

Since I had my first seizure on January 1st 1999 (at 5am), I’ve been through a number of medicine. Each time the problem was that my body got used to them real quickly and doses increased, medicine changed.

I started of with Phenobarbital in 2000 and reached the maximum dose of 400 mg/day in 2002 in a single dose per day. I had quite a few adverse effects: dizziness, vertigo, fatigue, continuous headaches among others.

In 2004, when I started my Bachelor studies (in another city), I changed my neurologist and, of course, she changed my treatment. I started Carbamazepine and reached 1600 mg/day (in two doses) in 2008. Among the side effects were: dizziness, headaches, trouble sleeping, sudden mood swings, ataxia and I could go on.

In 2008, I started Topamax (topiramate) with a two-doses per day routine. By 2012, I reached the maximum dose of 400 mg/day. That year, I also moved to another country (from Romania to Belgium) and started visiting another neurologist with different views and ideas. He’s considered one of the best epilepsy specialists in Belgium.

Up to 2012, all medicine I took were in monotherapy.

Because I still had (a few) seizures when I first went to him and I was already on the maximum daily dose of Topamax, he proposed to ease out the Topamax and introduce Lamictal (lamotrigine).

It took about 6 months to get off Topamax and reach the proposed dose of Lamictal. During this 6 months, I had two more seizures.

My next appointment (in 2014) with him led to an increase in the amount of Lamictal and to the introduction of Vimpat (lacosamide).

The period it took my body to adjust to these changes in medicine and dosage was the worst ever. I had 11 more seizures before reaching the current level.

Currently, I am on Vimpat 100 mg (twice per day) and Lamictal 250 mg (twice per day). Since I reached this level, I had two more seizures which were caused by stress or fatigue (as usual).

I look forward for the next appointment (in November) to see what will happen next. He already proposed surgical options (Vagus nerve stimulation), but nobody will ever touch my brain while I am alive. My brain is my best asset.