EMU for a week maybe soon. Can anyone tell me anything about it?

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same here, original waiting list for me was two years. seizures got worse so it sped up, only waited one year.
maedae do you have anything that's a for-sure trigger? if you can make that happen along with being off meds it's more likely.
 
Hi Thecatcameback ,
I happy to hear that they were able to captured a seizure (sad to hear that you have them) and now they can get to a cure or treatment that will lesson or prevent you from having seizures. I have a friend who's son had seizure so severe he would end up hospitalized for days even weeks. He finally had the surgery and is doing so much better. He had a seizure almost 2 years after the surgery, but to my knowledge has not had one in the last 3 years. So, best wishes to you. Keep us posted on your test and surgery. Best wishes!
 
same here, original waiting list for me was two years. seizures got worse so it sped up, only waited one year.
maedae do you have anything that's a for-sure trigger? if you can make that happen along with being off meds it's more likely.

Qtowngirl,
Did you still have seizures after having the surgery? I don't know what my triggers are. I believe that one is food. If I eat 1st thing in the morning or I wait too long to eat, I start seeing zig sagging lights (like ping pong balls) and I feel like I'm melting to the ground. Legs get heavy as well. When I am at work, I think stress triggers them. I noticed that they seem to be the same time of the day - between 9am and 12pm and sometimes in the evenings between 8pm and 11pm. To be honest, Im still trying to recognize all the little (small but powerful) things that happen. I think they are pretty much the same each time, but sometimes just more intense and longer in duration. I hope and pray that something regist'mers during my hospital stay. Im tired of feeling like Im crazy and I;m tired of trying to explain how I feel to the docs. Its scary not knowing whats going on and even worse that no one can help me. I'm really having a hard time functioning, focusing, sleeping and all the other normal stuff people do. I wish my brain would just ....
It's booth physically and mentally exhausting.
 
I've always smoked in EMUs. The nurses here are always very good about that. The nursing sister who was watching me used to let me smoke out the window and she'd warn me when the neurosurgeon was coming. And the most recent one I did was in a more open hospital, with detachable EEGs, so the nurses would take me outside for smoke breaks. It's against doctor's orders, but my mother taught me early in my epilepsy career to be rebellious in hospital if that would make it more bearable. Okay, okay, now I'm going to get a lot of flack, but it's crap enough and the wards we have are single bed ones, so no bothering other patients.

My MOST IMPORTANT advice is get yourself some of that dry shampoo and take whatever products/fragrances/hot water bottles with you that will make you feel less ugly and more cosy. Nothing bothered me more than not being able to wash my hair.

I got a bad case of insomnia because they'd force me to stay awake till 1 am and then want me to sleep on command. At that point, I was already wide awake again. The only way I could cope is to have a whole range of very different kinds of entertainment. You get sick of being in one room all the time, sick of doing the same thing every day, and you have to ward off the cabin fever.

My first video EEG only lasted three days because the neuro used adrenaline, lights, and hyperventilation to bring on a seizure and that was that. Much, much better.

For my second one, the neuro didn't want to provoke a seizure at all. He said it was much better to let it come naturally, so he'd essentially leave me in that room for as long as it took. It was awful. I have no idea if there is any benefit to that approach but I certainly preferred the first one.

For my first one, the nurses and doctor purposefully tried to stress me out as much as possible and even asked my mother to do the same. She told me on the second day, and after that it became more tolerable.

Make the most of visiting hours. Organise all kinds of different visitors. Tell them to bring games. Those snatches of time can be enough to support the whole day.
 
The first EEG video I had I was in the hospital for 5 days. I had no seizure. The after they disconnected me I had a seizure while I was still in the bed, ripping out the IV in my arm. I was crazed. That's when I was given new medications. That was in 2009 and I've been given various meds ever since. I'm going through tests in preparation for surgery now.
 
Thank you all for your help and advice. You will never believe what happened during my week long EEG. I started a new thread tagging this one. Thanks again.
 
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