Seizures with no medical answers
I have been having seizure episodes for a little over 2 years now. Some times they mimic gran mal seizures and other times it will mimic absence seizures. I have seen multiple neurologists over the course of the last 2 years, I have had every test that I know of (MRI, CT Scans, and EEG). To date I have yet to receive any answers from what is causing these episodes to occur. I did have multiple seizures during the EEG in which the doctors have said that there was no activity recorded from the brain to indicate what causes the episodes. Basically, they gave up trying to find the answers and the neurologists told me that I still can’t drive and the normal medicines won’t work for me so they told me there was nothing further that they could do to help me. I am desperate at this point. I need to find a doctor that won’t give up on finding an answer for me. Has anyone else ever experienced this that can give me some ideas on how to advocate for myself better?
Wow. Never met someone else with the same type of seizures as me. And all the same Drs visits and results. Although I’ve only been battling for 2.5 years, it’s been a very long difficult journey.
Never had seizures my entire life until Feb 5, 2023. I don’t know what caused it but it was so bad I stopped breathing on the way to the hospital, that my husband called 911. And they told him to pull over at a gas station to wait for Ambo/EMS to come get me. They had him pull me from the car to lay on the ground in the rain doing chest compressions.
Almost any Dr that sees it happen says I have epileptic seizures. The Drs did all the tests, including the mobile EEG for 72 hours. Even though I had seizures while wearing it, nothing showed on the report.
So my neuro says these are NON-EPILEPSY seizures and cannot be controlled. She’s basically washing her hands of me. She told me not to drive, which I strictly didn’t. And told me group therapy would be my best option. I’m sorry but I’ve done CBT, private therapy, ECT and everything else under the sun but it doesn’t work.
Then she says well since they are non epileptic I suppose you can start driving again.
My first solo drive was to Costco to pick up my meds. While there, I got really stressed and overwhelmed and had a Grand Mal on the floor of Costco and my hubby had to come get me.
So now my father in law says I cannot drive at all. That is the most frustrating thing yet. Besides the humiliation.
I have severe back issues and can barely walk or even get out of bed. And I just recently had my 4th major reconstructive surgery on my hand so I’m basically one handed at this point and it hurts so bad.
It is so difficult to do my ADL in so grateful for my terrific husband and his parents who have become my parents bc I don’t have any.
Sorry I think I rambled. Just having someone out there who understands is amazing!
So pls respond or text with any questions or suggestions as much as possible!
Thank you all for reading my story.
thank you for sharing so openly and honestly. You have been through so much. Our community is hear to listen, you don't ever need to apologize for sharing. I am so glad you can get some comfort knowing you are not alone in this. Jill (Team Member)
My husband's the same, about 5 years now. Tests give no results but tonic-clonic seizures still occur. First, he went to a neurologist who thought that something's wrong with his blood vessels and gave him medications that didn't help. Then he went to an epileptologist who diagnosed him with epilepsy, and her medications do reduce frequency of seizures, though we still fight for answers.
Every story is different but here what I think helped our current doctor:
1) A seizure diary. I write down the day and approximate time of a seizure and mark it as "seen by [someone]" or "suspected to have happened based on [husband's feelings, sensations]". This also hepled us to discover some patterns, e.g. that the episodes occur mostly during sleep or some hours after awakening and that they can be provoked by long journeys
2) I managed to catch one seizure on camera to show his doctor
3) We tried to describe as precisely as we could what happens before, during, and after seizures
If there's no one around to help you gather info, I think you can do such research on your own as well. Also, do you know or can you ask if some of your blood relatives had similar/other strange symptoms? Even if they hadn't, it also can provide clearness to your story.
Try to remember when and probably why your first seizure had happened. Dig up your childhood/teenagehood memories (there can be some events you didn't think of as strange at the time but which are worth to be analyzed now).
This is all I can say for now. Hope it helps, sorry if it doesn't. I wish you luck and strength on your way.I’m in ur same boat. 3rd now in a little over a year. No answers just questions and meds
