People who have epilepsy AND have an abnormal EEG, did the AED meds make your EEG normal?
- Thread starter Adiroop
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Most times, even though I was on medication, I still had abnormalities.
There was only one time when I had a normal EEG while instructed to take my medication before the EEG. Since it was normal, I was able to come off of the medication. I did so successfully for 15 months. It was the best 15 months ever, but it didn't last...sadly. I felt so much better, a lot more energy, truly more alive inside, but then COVID.
Before this point, I was on medication for 10 years and was "seizure free". Hadn't had any issues.
After getting COVID and that flaring up and messing everything up along with the environmental issues of my previous living situation, I'm having issues all over again and they're harder to keep under control than before.
The most recent EEG I had (I think it was 2021), I was put back on medication first, and a month or so later when I went in, there were abnormalities again.
There was only one time when I had a normal EEG while instructed to take my medication before the EEG. Since it was normal, I was able to come off of the medication. I did so successfully for 15 months. It was the best 15 months ever, but it didn't last...sadly. I felt so much better, a lot more energy, truly more alive inside, but then COVID.
Before this point, I was on medication for 10 years and was "seizure free". Hadn't had any issues.
After getting COVID and that flaring up and messing everything up along with the environmental issues of my previous living situation, I'm having issues all over again and they're harder to keep under control than before.
The most recent EEG I had (I think it was 2021), I was put back on medication first, and a month or so later when I went in, there were abnormalities again.
I still had the seizures but it was because the EEG and other testing I had done didn't show all the areas of my brain
that was triggering the seizures because the damage was to deep in my brain for any of the tests to show. It wasn't
until I had surgery to reduce my seizures that the Dr. found damaging on both sides of my brain when all along they
thought it was just on the right temporal lobe. Wishing you only the best and May God Bless You!
Sue
that was triggering the seizures because the damage was to deep in my brain for any of the tests to show. It wasn't
until I had surgery to reduce my seizures that the Dr. found damaging on both sides of my brain when all along they
thought it was just on the right temporal lobe. Wishing you only the best and May God Bless You!
Sue
Thanks for the reply! So, even though you didnt have seizures, you still had abnormalities in EEG? How long was it like this?Most times, even though I was on medication, I still had abnormalities.
There was only one time when I had a normal EEG while instructed to take my medication before the EEG. Since it was normal, I was able to come off of the medication. I did so successfully for 15 months. It was the best 15 months ever, but it didn't last...sadly. I felt so much better, a lot more energy, truly more alive inside, but then COVID.
Before this point, I was on medication for 10 years and was "seizure free". Hadn't had any issues.
After getting COVID and that flaring up and messing everything up along with the environmental issues of my previous living situation, I'm having issues all over again and they're harder to keep under control than before.
The most recent EEG I had (I think it was 2021), I was put back on medication first, and a month or so later when I went in, there were abnormalities again.
I've had at last 4 or 5 EEGs & will be having a 48-hour ambulatory EEG starting 11/7. Despite taking almost every AED out there, my "regular" EEGs have usually shown epileptic activity. I'm currently on 500MG Zonisamide & 200MG Xcopri (which I began in June).
Everything was going well until a few weeks ago, when I suddenly had a complex partial--the first in about 3 months. Otherwise, I was averaging 1-3 complex partials/month. My neurologist has added 50MG of Xcopri for 2 weeks to see how I do (I didn't want to add a third medication).
Everything was going well until a few weeks ago, when I suddenly had a complex partial--the first in about 3 months. Otherwise, I was averaging 1-3 complex partials/month. My neurologist has added 50MG of Xcopri for 2 weeks to see how I do (I didn't want to add a third medication).
Thanks for the reply! If you dont mind, what sort of epilepsy do you have? Generalized, focal?
Trying to think on the EEG's I've had further back to better answer your question.
-Had one back in roughly 2005 (this was quite a few years after the one for the initial diagnosis, which was abnormal and I wasn't on medication for the initial one) that showed up abnormal, but also my medication I was taking was different than what I was taking now. I took it for 4 years, which was far too long for as many break through seizures as I was having, not sure why I was even kept on it. The abnormal result made sense here despite taking medication
-The next EEG was in 2019 (yes, a HUGE gap because there were points where I didn't have any health insurance and couldn't afford it so I'd decline the testing). I was on medication that worked from 2010 - 2019-ish. This EEG was normal so I was able to come off my medication because of my seizure free history for about 10 years at that time and a normal EEG. I was seizure free from that point in 2019 to almost the end of 2020. Then, I got COVID, seizures returned with a vengeance and it was the most awful thing ever. The wait for the neurologist is long and I only had a month's supply of medication from the hospital. Getting in to see a doctor during the pandemic was difficult.
-Because of the seizures coming up again and many more seizures happening in the following months before the appointment and another hospital stay, I had another EEG in 2021. I was put back on medication about 2-3 months before this appointment, but when I had the EEG, it was still abnormal, but I'm also still struggling to keep it under control.
Hope that answers your question.
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
I have generalized seizures.
In my case, I had complained of "weird feelings" in my head since I was 5, which nobody could understand. At 14 I had 3 or 4 tonic-clonics, & and when one of those feelings was caught on an EEG, they recognized them as simple partials. I suddenly started having complex partials about 25 years ago.
The Clinical Features and Long-Term Follow-Up of Vitamin B6-Responsive Infantile Spasms in a Chinese Cohort
Long-term follow-up of an individual with vitamin B6-dependent seizuresPyridoxine dependent epilepsy: a suggestive electroclinical pattern
I know it is not AEDs and it is extremely rare but above are some EEG findings for B6 Dependent Seizures.
**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**
My story: https://www.coping-with-epilepsy.com/threads/40-years-on-vitamin-b6.11674/ (I have now been using vitamin B6 for over 51 years)
I've never been truly "seizure -free" for more than a couple months--even since I began taking AEDs in 1987. I feel it's almost like my brain becomes "immune" to whatever AED I'm taking after a while, & the breakthroughs begin again. I wonder if it is due to the simple partials beginning in an area of my brain where the neurologists said there was scar tissue. (I was a forceps delivery--that's the only way I could have hurt my head--I never played sports)