24hour sleep deprived EEG anybody?!

[WHYherewhyNow]

Hello there,

I've posted here for traffic. As the title says, I have this coming up (for drug resistant epilepsy). I'm bloody terrified.

Has anybody been through it?

Bump

Is this the EEG where you have to stay up beforehand. Personally I refused to do it/ stay up for 24 full hours. It’s too much.

I had it done about 10 years ago. It wasn't as bad as I thought it would be.

I did have seizures during the eeg after so had to stay in overnight but to be honest it was worth it as it gave them the data of where the seizures were starting so ended up seizure free eventually as a result of it

Thanks for your replies. It is staying up for a full 24 hours before the test, eeg is in the morning. I will have three of my known triggers all together which are: hormones, sleep deprivation, then stress for the test. Sleep itself is a trigger, mine are predominantly nocturnal.

I already get focal seizures on the cycle day it is arranged for. Having the seizure is guaranteed, but I'll be lucky if I can stop it before the test itself. The hospital is a half an hour drive away. Dh will drive us, and we'll drop the dcs at school before heading to hospital in traffic. Dc's are only little.

Not allowed caffeine, or chocolate, so it's not like I can even make it a fun movie night. I'm going to be ill.

Then there'll be the impact I'm left with when it is over. I'm scared my seizure will generalise again, I haven't been unconscious since before the AEDs.

I don't know how I'm going to manage it.

Forgot to say they're wanting to see my baseline brain waves under stressful conditions, while on my current AEDs, which is why they're doing it. If they see a seizure as well, great apparently.

Thank you, I'm so scared it'll be all for nothing, I've heard if you have a seizure then go in, your brain waves are slowed down so they can't see the interictal activity.

I would be besides myself if I have to stay in overnight, and leave my children. One is AuADHD as well. I worry for their distress.

do you not have family who could babysit?

No, unfortunately not. They'll be at school through the day, but this is just one factor tbh. I think I'm going to decline it too.

Hey! I have had a 2 of these tests, albeit they were over 10 years ago! My consultant told me the purpose is make you as sleep deprived as possible, and not to worry if you didn’t manage the whole 24 hours deprived! In my experience they were testing just for the photosensitivity, so as soon as I showed even the smallest reaction they stopped the test. I was also able to ask them to stop whenever I felt the test got too much for me.

They made sure I was really reaussured about what would happen if I did have a full seizure. My family attended mine to support me, but it was hard on them to see me in the pre seizure stages!

Hope all goes well, and take care of yourself!

Thank you for your reply. May I ask if yours showed, and if this helped your situation? My consultant hasn't been very helpful to be honest, the whole thing has been sprung on me last minute. My GP gave me more advice, and information about an abdominal scan!

All I have been told is Dr <insert name> wants it done, and I was put on the spot with a phonecall asking me to attend on a specific date and time. The consultant was actually quite excited and dismissive about the whole thing, and blanked me pretty much, when I mentioned having young children. I don't really feel I agreed to it in the first place; the decision was just sort of made for me. They sent a standard vague leaflet out, which they give for awake eegs. There was no information given for anything going wrong, or stopping the test, because they want to provoke a seizure. In my case I would be guaranteed to have one probably beforehand during the night. It is just too much for my family and I to endure at this moment in time.

I'm going to see how the recent increase of AEDs go, and rearrange in a few months if still needed. So far, I feel an improvement. 🤞