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?
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
