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?