u/-MillennialAF-

I know a lot of people have sleep seizures in here, so I assume there's some fear of sleep. I wasn't asleep, but I had status epilepticus in my bed a month ago and almost died. I guess 8 EMTs came, I had to be intubated, flown to another hospital, woke up in the ICU -- a nightmare too many people in here understand.

I had a set back in recovery last week because I got food poisoning and the vomiting wrecked my esophagus -- it was bleeding, I couldn't eat for 5 days. This led to breakthrough seizures I assume because of the lack of food.

Yesterday was the one month anniversary of when it happened and I had to go in for medical help to get an IV for the second time. I was sooooo postictal and delirious that I couldn't even understand basic right-left instructions to find the room they were taking me to. So I was a little more numb to the feelings.

Today I didn't have any seizures, I slept for 14 hours, I was able to eat some food, and I'm finally clear headed. Now I'm sitting in my bed and I'm too afraid to go to sleep.

I feel like if I let go of consciousness I won't wake up. My brain can reason that's not true -- my medication is working really well -- but my body doesn't understand yet. It doesn't feel safe in my bed anymore. And I feel like people who don't have seizures don't get it. Even my therapists.

I know time and repetitively going to sleep and waking up is what needs to happen but it just feels so suffocating and scary tonight.

Anyone else feel this way? Anyone else find ways to cope? How did you find your way back to feeling safe?

If you have had status epilepticus, particularly with intubation and ICU care, how long was your recovery? What did the process look like?

My medication seems to be dialed in pretty well now, which is great. I haven’t had any tonic clonic seizures since I left the hospital 5 days ago. I am still having some focal impaired awareness seizures. But just overall it’s been rough emotionally and physically recovering. I did aspirate and go into respiratory failure so that is a factor.

I feel like I didn’t fully accept this could happen to me, even though my seizures tend to cluster. And then it did. And now I feel like I don’t really have a map of what recovery looks like.

So, I wanted to ask what your recovery looked like if you have been down this road. What helped?