I finally saw an epileptologist in Toronto who wants me to spend 10 to 14 days inside a hospital room with electrodes on my head and cameras on me as they take me off my meds until I have a seizure, which may be 'worse than usual.' Then they figure out what causes my seizures and put me on the right meds and turf me out to make room for the person.
Has anyone else been through this? I am so thrilled someone is trying to help and not just blaming me for all my symptoms.
I’ve been through this experience more than once. I never bothered me , having wires clued to my head and being watched through the video camera.
The hospital I was at, had a Seizure Unit . The floor was carpeted throughout the Unit. We had a long cable cord connected to an electronic box that was also connected to the Electrodes. Then if we wanted to leave our room and visit others in the leisure room, play games and watch tv..
While they were reducing my meds during the VEEG , notice my brain 🧠 was fighting back. I did have seizures during the testing, but they weren’t big or strong enough to satisfy them. I was even down to zero meds and my brain was still fighting.
every one of my VEEG’ s with med reduction , My Epileptologist would finally come to me and ask if there is any type of Alcohol drink that I would like to have , so it would hopefully make me have a strong seizure. One of those times I was craving Regular Dr. Pepper. I can drink Diet sodas but , if I drank regular sodas, it would make me seizure. They brung me two cans Of Regular Dr. Pepper. I finished my first can and started on my second one. By this time my mom was visiting and and not too long I exploded a really big seizure. I scared my mom half to death. My Dr. Was finally excited for that seizure. They gradually started upping my doses of meds , until I was back up to my original dosage. Then I got to go home. Before I left I asked one of the staff if I could have a copy of my big seizure. They gave me a recording of it. When I got home I watched it and I thought to myself , ‘ THAT’s NOT ME ‘ .
When I did it, It found out valueable info. It helped find my tumor. It found out it was rare. It led to a GAMMA KNIFE surgery. I also had to do it a few other times One other time led to my last 2 seizures, to find that my seizures are coming from only one side of my brain!! It led to my other 2 surgeries. I am real close to 100% right now!!!
It is well worth doing! I had a lots of test over a whole year - Two times in hospital as an in-patient - once for 13 days under video-telemetry. Another time for about ten days while they put me on EEG 24/7 and reduced and changed medications. Only then did they truly discover what sort of seizures I had and where they were coming from! - Bi-temporal lobe! I supprised them! If they give you an option to go in for any tests - always take it!
Just got back from Calgary’s SMU, spent two weeks there but learned a lot about what kind of seizures I have. It’s worth it. Good luck🙂
Me too. They had to keep me in the hospital longer than expected to get their results. It seemed like it took forever!!!