milesred

Do you / would you donate?

In short:

• Patients in the USA don’t want a huge bill
• Sometimes we have to go to hospital a lot, and end up getting a lot more stressed out by it, when all that is offered is monitoring and some very basic tests
• It’s a strain on hospital resources when we don’t see the value in going for the nth time
• If stress / sleep deprivation are significant triggers for an individual, hospital can make this worse and being at home / taken home is more comfortable
• If you’re a regular, there is very little that can be gained from this (exceptions being an injury caused by event), in the UK you’re still going to have to wait for 3 months to see a neurologist

I have been to hospital 5 times. My seizures have always been long, and a few resulted in pretty bad injuries so it made sense these times. The first ones I didn’t know I was epileptic so absolutely had to go to ER.

But if I’m at home, not injured, with others then they are not going to call unless there are serious problems.

On the topic of alcohol, I have noticed that the morning after drinking is a lot worse for myself and others. Sleep is my main trigger.

As alcohol can disrupt deep sleep, it would make sense that this ties in. So be extra careful the morning after drinking if you have experienced seizures triggered by sleep deprivation before.

I recently posted on reddit about some injuries I sustained during a grand mal and want to know if this is normal.

A) I had a seizure two years ago where I clenched my jaw so tight that I fractured the front of my jaw and four teeth, just from biting down. The bone that is in front of the front teeth all broke off. It took 10-15 dental appointments to fix everything over 18 months.

B) I had a seizure and hit my head on a stone counter, I was on my own. I know it happened around 9pm, based on the last time I had sent someone a message. I woke up at 3am, in bed, in pain, not knowing what happened.

I know about post-Ictal periods and the amnesia but I have no idea how I got into bed, or when. There was blood all over my house, so I had been moving around doing something. I didn’t call anyone or message or anything. Eventually called for an ambulance as I didn’t know how much damage I had done to myself.

C) When friends have seen me have seizures, they say they often last over 15m, sometimes I will stop / start and they will go on for half an hour.

Is all of this normal? I know it’s epilepsy and it’s all pretty weird and variable, but I don’t have anything to compare this against.

I usually use the NICE guidelines or epilepsy action guidelines as a basis for discussion.