@baa
Of course I agree with @santosha about you and your daughter seeing the Neurologist regarding safety issues. The problem is many Neurologists don’t openly discuss the problems associated with Epilepsy, some doctors have admitted they don’t mention certain rare conditions because they don’t want to scare or feel the patient may not understand.
Ask about the possibility of Status Epilepticus and S.U.D.E.P. (Sudden Unexplained Death in Epilepsy.) These are both rare conditions. Ask what would happen if Status were to strike and you were alone. It likely wouldn't matter with SUDEP but who knows. Admittedly, none of this will probably ever happen.
I mention asking about S.U.D.E.P. because your seizures are generalized tonic clonic seizures, and they are also nocturnal. Depending on how many you have in a given period of time your risk is either increased or decreased. I’m not trying to scare you by telling you any of this. I just believe every epilepsy patient has a right to know. However regardless of what patients are told it’s not a guarantee. I was told I would have seizures until the day I die and my parents were called to the hospital many many times saying if you want to see your son again you need to come now. Well at age 59 my seizures for whatever reason stopped unless I didn’t take my medicine, of course and obviously, I never died any of the times my parents were called to the hospital. So basically all I’m saying is whatever your doctor says doesn’t mean they’re right especially with the unpredictability of a seizure disorder.
Because of the severity of my epilepsy, I lived with my parents, my entire life until they both passed. I have been living on my own since November 2019. A roommate should be moving in with me shortly. I have a long history of status epilepticas, and if I were to have an episode of Status and I was alone, well sayonara to me.
The problem with seizures is the longer they last the less likely they will stop on their own. My first episode of status epilepticus I was in a coma for eight months. When I came out, I had no memory and couldn’t do or recognize the most basic of things. They say it’s rare but I have had many. Known people who have had it, others who have died. just because something is rare doesn’t mean it doesn’t happen. No doctor ever told us it was a possibility.
My own personal opinion is that people with Epilepsy may face many dangers depending on various factors. As far as your daughter, moving in with you, where it me, I would feel safer.
I’m sure you already know about not taking a bath at least not alone. Countless people have drowned in the bathtub during a seizure and so it’s recommended to only take a shower. However, people have drowned in the shower as well. They have also had seizures in the shower and fallen and hit the faucet and knocked it to the hot side, and been severely burned or injured In falls. We shouldn't cook using front burners. The majority of the time I use the microwave.
As far as having nocturnal seizures are concerned, there are bed alarms and monitors so someone else can hear you and come and hopefully rouse you in case it's S.U.D.E.P.
You might ask about an anti-suffocation pillow. As long as the status quo remains complications will most likely remain low.
Sorry for going on & on.
Best of luck,
Jake

Jump to this post