Blog · Dealing with epilepsy

Death to epileptics

Suicidal thoughts are one of the side effects you can find for every type of AED. Criminal thoughts are less likely, but it appears on boxes from time to time (see Fycompa).

Although I think about (not suicide, nor murder) death sometimes, I never had such thoughts.

And I was wondering: what does death mean to epileptics? A relief? Something to be afraid of? Continue reading “Death to epileptics”

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Blog · Dealing with epilepsy

Video-EEG, refractory epilepsy and more seizures than usual

I haven’t written a post in quite a while here, but that’s because strange things have happened.

While before, I was having 3-4 seizures per year, 2017 started with a blast. I have 4 on January 9th, followed by seizures March -> one on March 4th and 5 more on March 26th. It was a game changer.

I was on Lamictal and Vimpat at the time and my neurologist, after my the 4th of March seizures decided to increase my dose of Vimpat (via phone and email). He considered that the balance between the two drugs was off. That really didn’t work as a couple of week later, I had 5 more seizures. Continue reading “Video-EEG, refractory epilepsy and more seizures than usual”

Misconceptions · Not too personal · Old blog

#GettingPersonal The epilepsy in me

I wrote a couple of months ago a post regarding what people with chronic illnesses hate most (see HERE). To the pity looks I mentioned there, I have to add the annoyance of medication.

When you tried X number of treatments, having to take pills several times a day is really annoying, especially if you take several types of drug. On a scale from 1 to 10 of annoyance levels, medication would probably be around 7 or 8.

The horror of medication begins with going through several types of drugs, indeed. I went through 4 or 5 of them up till now. For all, I developed a resistance after reaching the maximum dose allowed for adults. Fenobarbital was the first.

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My neurologist recently told me that we need to change treatment (he added a new drug) and see how that will go. He’ll see me again in six months if no effects appear. He mentioned side effects like double vision, suicidal tendencies and a few others. If this doesn’t work either, we’ll have to check surgical options.

But one thing I know: No one will ever touch my brain!! It`s my best asset and it will stay the way it is.