New to seizures

[stlcathy]

September 1 2024 I was in the hospital for 2 months, ICU , on ventilator for grand mal seizures, since then I have been in the hospital at least once to twice a day , not fun , all due to seizures, every time an EEG was done and it showed abnormal activity in the brain , finally an EMU was done and it showed left and right temporal seizures . I’m on 3 different medications and I’m still having 2-3 seizures a week but now they only last under 5 minutes, the doctor is having difficulty with my meds. I keep telling my neurologist that the sunlight, snow , inside house light and retail store lights can make me have a seizure. He doesn’t know why those things bother me , also I see multiple times during the week red/blu flashing lights if the light gets intense I have a seizure, my doctor has no clue why I see those lights . Also I have not had a menstrual cycle in 7 months and my labs say I should , I ask my doctor if my hormones could cause me to have increased seizure activity and he says no . I’m totally confused because I do google search and I read that some people have commented on these aura . Does anyone else have any experience with this? I’m lost I just want to function in the world

 

[Sabbo]

Hello, stlcathy. Welcome to CWE. Hopefully, you will get a lot of help here. One thing that will help you AND your neurologist is to make a journal of your seizures--when they occur, what happened during them, etc. You should note & tell your neurologist about your menstrual cycle disruption. I often feel the AEDS sent me into menopause early.
I have simple & complex partial seizures. I've had the simple partials since I was a kid--I'd complain of a "weird feeling" in my head, which wasn't recognized as a seizure until it occurred during an EEG they did AFTER I had 3 or 4 grand mal seizures when I was 14 (none since). Unfortunately, about 26 years ago, I began to have complex partials as well, which have been VERY dangerous for me. I take 500MG Zonisamide and 250MG Xcopri, but still have around 1-3 breakthrough complex partials /month

 

[stlcathy]

Thank you for your response, I hope that I can get information that will help me understand but at times I feel like the neurologist doesn’t listen, the one I have been seeing is at her wilt so now I saw a specialist on seizures last Thursday but I’m wondering bc he doesn’t understand why I see flashing lights

 

[Porkette]

Hi stlcathy,

Welcome to CWE! You and I have a lot in common. I have right temporal lobe epilepsy but over the yrs. it spread to the left
temporal lobe from many yrs. of seizures. I have absence and complex parital seizures along with aura seizures also called simple
partial seizures.
You mentioned that when you are around certain color lights that will trigger a seizure this tell me you are photosensitive meaning
certain color lights will trigger seizures. I had the same problem until I had surgery. Your neurologist needs to do a e.e.g. on you
where they flash different color lights one at a time and by doing that they can find out what colors are causing the seizures. I found
out the colors florescent green, bright white like when the sun is shining on the snow, and amber were the 3 colors that were triggering
seizures for me. The red and blue light you are seeing sounds like a aura, simple partial seizure that leads into a main seizure. I've had
this happen for many yrs. only I see colors of the rainbow flashing back and forth in my eyes. This happens when the optical lobe gets
to much electricity and in turn triggers a seizure.
When it comes to hormones changing that can cause seizures for many people. I would have them every month about 5 days
before my cycle and that is because the estrogen level is increasing in my body and that causes excitement while the progesterone
level goes down and that's what help calm the nerves.
To find the correct med tell your neurologist to do a DNA test on you they will draw blood and get some salvia from the inside of
your mouth, all of that goes to the lab where they can see the amount of enzymes in your liver and your body chemistry and then
the Dr. can match that up to the best seizure med for you with the least side effect or the test will show if you are drug resistant
like me.
I saw many neurologist over the yrs. but I got the most help from a Epileptologist who is a Dr. that specializes in epilepsy and
you can find them at big hospitals or university hospitals. You may want to consider seeing an Epileptologist instead.
Start keeping track of your seizures what time they happen and the type of seizure and write it down on a calendar. Also write
down when you start and stop your monthly cycle. By doing this your neurologist may see a pattern in your seizures.
Here's wishing you the best of luck and May God Bless You!

Sue