Non-epileptic seizures (MRI, pain, arms, doctor)

[jeepin4us]

Two years ago at 48 years old I had 2 seizures within a few hrs. No prior seizures and no family history of seizures. Went into A-fib and was rushed to the ER and they did an EEG, MRI & CT scan. Found no problems, no epileptic problems except I did break both my arms in the fall. Was put on 3000mg of Keppra daily and tolerated it well. Was seizure free for 2+ years until last week I was sitting at the table and suddenly felt faint and fell backwards out of a chair and had another seizure. Didn’t break any bones on this fall but got one nasty concussion and pain associated with this (and no a-fib this time). I’m scheduled for an EEG again next week but I want to look into this further.

Can anyone point me to any forums out there? The ones I’ve found don’t seem to be too heavily trafficked. Thanks!

[mm_mary73]

Originally Posted by jeepin4us

Two years ago at 48 years old I had 2 seizures within a few hrs. No prior seizures and no family history of seizures. Went into A-fib and was rushed to the ER and they did an EEG, MRI & CT scan. Found no problems, no epileptic problems except I did break both my arms in the fall. Was put on 3000mg of Keppra daily and tolerated it well. Was seizure free for 2+ years until last week I was sitting at the table and suddenly felt faint and fell backwards out of a chair and had another seizure. Didn’t break any bones on this fall but got one nasty concussion and pain associated with this (and no a-fib this time). I’m scheduled for an EEG again next week but I want to look into this further.

Can anyone point me to any forums out there? The ones I’ve found don’t seem to be too heavily trafficked. Thanks!

Your healthcare provider or the neurologist who prescribed Keppra and (I assume) has been following you while you're on it.

[jeepin4us]

Originally Posted by mm_mary73

Your healthcare provider or the neurologist who prescribed Keppra and (I assume) has been following you while you're on it.

??? Hi Mary. I'm looking for forums with people with similiar problems discuss the various treatments, options, etc.

[AnonChick]

If you look at the FDA's patient information on Keppra, you'll see that it's prescribed specifically for epilepsy, to treat epileptic seizures. Maybe your doctor prescribed it off-label for your situation, but it isn't intended to treat non-epileptic seizures. In other words, if you don't have epilepsy, then whatever is causing your seizures, needs something -other- than Keppra. It's possible that your seizure was a fluke, and you wouldn't be getting seizures the last two years even if you weren't taking Keppra. But no one on any forum, anywhere, would be able to tell you why you were prescribed Keppra for non-epileptic seizures, or why you are suddenly having a seizure after two years of not having any.

If you want to know more about epilepsy and participate in forum support, you can go to Community Forum | epilepsy.com

But you didn't really say what you want help with - with understanding Keppra? With understanding seizures? Epilepsy? Brain function in general? Non-epilepsy seizures? Non-epilepsy seizures isn't an actual diagnosis. It's an explanation of symptom. You are having seizures that aren't related to epilepsy, from what you've stated. But that doesn't say what your seizures ARE related to. Someone could say "oh take 4 of those every day" and those - whatever they are, might treat something you don't have, and therefore, you wouldn't benefit from it at all and it'd be a total waste of money, and possibly create risk.

If you just want a support community, try that epilepsy site I linked you to. But bear in mind, most of the people posting on it have epilepsy - which you state you don't have. But they do have experience with seizures - so you might find help there.

[Pikantari]

I am not sure how it was proven to be non-epileptic seizures, and furthermore, why a dr would then put you on an anti-convulsant.

You've taken the Keppra for 2 years and now have had another seizure? Were you on the Keppra all this time? If so, it sounds like a break through seizure to me.

I have epilepsy. What they used to call Grand Mal but are now calling it Tonic Clonic. No one in my family had it and thus no family history. I was diagnosed when I was 11 years old and am now 39.

I have been seizure-free since October of 2008.

There are places online that have forums for epilepsy. I don't really use them as I have been dealing with it forever.

Non-epileptic seizures

[jeepin4us]

Thanks for the infomation. I had an EEG, MRI & CT scan back in 2011 and was told I had no signs of epilepsy. My doc said over half of seizures are not attributed to epilepsy and put me on 3000mg/day of Keppra to see if it controls my seizures. After having 2 seizures within a few hrs back in 2011 and then being put on Keppra I was seizure free for over 2 years, until a couple of weeks ago. Just had another EEG & CT scan this week and we'll try to see what's up. No family history of epilepsy and no seizures until I hit 47, and when I had my first seizures back in 2011 I injured myself pretty badly. Very frustrating.

[AZgarden]

Non epileptic seizures are usually associated with psychological/psychiatric conditions and may look like a real true epileptic seizure, but they are not. Usually a psychiatrist is needed to assist with this diagnosis and psychiatric meds may be used to eliminate the condition. They are known as psychogenic seizures and do not respond to anti epileptic meds like Keppra. You really need to get a full, complete eval to see what's going on and to delve a little deeper into your psyche. Good luck. I wish you the best.

[Pikantari]

Originally Posted by PhxBarb

Non epileptic seizures are usually associated with psychological/psychiatric conditions and may look like a real true epileptic seizure, but they are not. Usually a psychiatrist is needed to assist with this diagnosis and psychiatric meds may be used to eliminate the condition. They are known as psychogenic seizures and do not respond to anti epileptic meds like Keppra. You really need to get a full, complete eval to see what's going on and to delve a little deeper into your psyche. Good luck. I wish you the best.

I read that as well. It makes me wonder if they actually were epileptic seizures since he has responded for the last 2 years on the Keppra and may have had a break through seizure.....

[jeepin4us]

Originally Posted by Pikantari

I read that as well. It makes me wonder if they actually were epileptic seizures since he has responded for the last 2 years on the Keppra and may have had a break through seizure.....

Yea I thought that was puzzling as well. I find it odd they said the seizures were not epileptic seizures but then put me on Keppra? Hopefully I'll hear back about the CT scan & EEG soon.

It's very frustrating to just me going along all fine & dandy, taking the meds and then BLAM! ....another seizure!! I'm very lucky I didn't get hurt badly like last time. Now I feel like I din't truly have a handle on this, like a ticking timebomb, just waiting for the next one.

[Pikantari]

Originally Posted by jeepin4us

Yea I thought that was puzzling as well. I find it odd they said the seizures were not epileptic seizures but then put me on Keppra? Hopefully I'll hear back about the CT scan & EEG soon.

It's very frustrating to just me going along all fine & dandy, taking the meds and then BLAM! ....another seizure!! I'm very lucky I didn't get hurt badly like last time. Now I feel like I din't truly have a handle on this, like a ticking timebomb, just waiting for the next one.

Just so you know, after having Epilepsy for 28 years, some of my MRIs and EEGs come out absolutely normal.

I just wonder if you don't have some kind of adult onset epilepsy and the Keppra has been working for you.

Do you see a Neurologist regularly? It is hard. I had one year which was actually the last time I had a seizure where I was having them left and right. No driving for me, of course. One day the last thing I remember is that I was walking to the drug store. Then next thing I knew I woke up in an ambulance. I had a seizure in the parking lot and the guys from the garage across the street saw me and called 911.

It was a bad year seizure-wise. I didn't know which way was up. Stress and lack of sleep are my big things that cause seizures. That was nothing but stress that year.

Since then I have been much more stress free. Not completely without, but so much less. I do have sleep problems so I have to try and keep that in check.

Sorry you are going through this.