I had my annual epilepsy appointment yesterday. I had two seizures back in 2014, and I have been on Keppra ever since. You can read about my first epileptic seizure and my second epileptic seizure if you’d like.
I’ve been seizure free about 3.5 years now. I’ve had people ask me when I can go off of seizure medications, or whether I have epilepsy anymore at all. One of the more frustrating things about having an epilepsy diagnosis is how it feels there is just so much that science and doctors just don’t know about epilepsy. Some people have several seizures but then have a long period of being seizure-free, go off of medication, and are fine for the rest of their lives. It technically is possible for epilepsy to go into remission. But why does it go into remission? As far as I can tell, it’s never well understood.
At my appointment, my neurologist said that with me being seizure free for over 2 years, I could try going off of my seizure medication if I wanted. Something I’ve been really confused about is how to make that decision. I explained to her how I wish I knew what my odds of having another seizure would be. For example, if I knew that I had a 90% chance of remaining seizure free while going off of medication I might try it. While if I had a 90% change of HAVING a seizure without medication, I wouldn’t. She said they just don’t have a great way to estimate because each person is so different. She said that if I decided I wanted to try going off of medication, she would set me up with an EEG to see if it was normal or not. I had an abnormal EEG about 3 years ago, but I also had 2 or 3 normal EEG’s prior to that. EEG tests only measure your brain waves during the test. It’s possible to have abnormal brain waves at 9am, and again at 9pm in the same day, but if your test ran from noon to 1pm, it would provide normal results.
Anyway, she said that if I had an abnormal test result then I wouldn’t be able to go off of medication because that would indicate a high risk of seizures. On the other hand, if I had normal EEG results then I could try it, and she would estimate my risk of having a seizure to be about 50/50. She said this wasn’t specific to me, but just in general, if someone with a seizure history has been seizure free for 2 years, and has a normal EEG then they have about a 50/50 shot of remaining seizure free.
A 50% chance of having a seizure just feels high to me. I ultimately decided to just remain on medication. I do wonder if I’m taking medication for no reason, but the idea of having another seizure really scares me. I don’t know what to think about my future. If I remain seizure free for a full decade, would I think be more willing to take that risk? I don’t know. One of the frustrating aspects of having epilepsy is just how much unknown there is.
I have been seizure free since I was 25years. I keep taking the tablets as they are free ! and I have the reassurance that I will be fit free.
Thanks for posting your experience, I am glad to hear you have been seizure free recently. Have you had any issues with side effects from Keppra? I had really bad experiences with it:
– Blurry vision
– Upset stomach
– Headaches, including migraines
– Ringing ears
– Sore throat
At the 4500 mg/day dosage I also had severe depression and violent thoughts. I am generally a really mellow person, so this was really concerning.
Apparently it is a common side effect of Keppra called Keppra rage. However another friend has been on it for seven years and never had an issue. When we adjusted the level to 3000 mg/day, the depression and violent thoughts went away, but the rest of the side effects remained. Reducing the level further made no difference and since then I have tried 3 other medications: Zonisamide, Vimpat and Lamotrigine, with only slight improvement.
My seizure was a result of a meningioma surgery which left slight thickening of the dura – the membrane that wraps the outside of the brain. Other than that, there are no changes to the brain tissue on all recent MRI’s.
The history of my seizures is one episode 8 months after surgery, I had general seizure(s). I was admitted to the hospital and intubated, just incase I had trouble clearing my windpipe. Once a month I have what I think might be a very minor focal seizure: spasms in the left hand small and ring finger. These last a minute or two and are not associated with any cognitive changes, I don’t get more dizzy or confused. These small events have reduced over the last 10 months and I haven’t had any in the last 5 months.
I see my Neurosurgeon every 6 months and he feels I no longer need the meds. My Neurologist is noncommittal at this time, but suggests I continue to take the meds. I have had two EEG’s, a 30 minute one and a 3 day test. Neither showed any epileptic activity. My Neurologist isn’t sure that my monthly episodes are seizures.
Here is where I am at today: The side effects of my medications significantly effect my quality of life, I really, really want to get off them. I am a very active person and the side effects limit what I can do and where I can do them. I have tried a variety of medications and have seen little improvement in the side effects. At this point, I don’t know if the meds are stopping seizures from happening, or if I no longer need them because I no longer have seizures. My Neurosurgeon thinks one thing and the Neurologist another, though the Neurologist seems particularly noncommittal. This is my second Neurologist, he just left the practice and I need to find a third doctor, the next one can’t see me for 3 months.
This is a very frustrating situation for me. I feel like going off the meds, spend for months avoiding any situations that could endanger myself or others – no driving, mountain biking, hiking in the back country – and see how things go. But I don’t feel comfortable doing this outside of the supervision of a Neurologist.
Trying to get useful information from Neurologists has been difficult, probably for the very reason you mention – everyone is different and it is difficult to know precisely what is going on in the brain to cause seizures and what is the likelihood it will happen again.
I just wanted to share my experience. I hope you continue to be well and your medications are effective and comfortable to you.
All the best,