My video-EEG telemetry experience

I was admitted to the neurology department of a local hospital for a 48-hour VEEG study last week, to investigate the hours-long episodes of profound triedness, muscle weakness, loss of coordination, inability to concentrate, electric tingling sensations and other fun things that I've been suffering on an almost a daily basis for the past 7 years. These episodes have had a tremendously negative impact on my life, but I'd never gotten to the bottom of what was causing them in all that time, and not for a lack of trying.

My stay at the hospital was quite pleasant; I had a room and an attached bathroom to myself, the staff were all very friendly, the food was surprisingly palatable, someone would come along with a trolley and offer me tea or coffee every few hours, and sometimes biscuits or sandwiches, it was clean and there weren't even any nasty hospital smells. I brought my laptop along and played Battle of Wesnoth for most of the time that I wasn't sleeping or otherwise indisposed. I had some study material for university on the laptop, but in my unmedicated state at the time, studying was a difficult proposition.

During the first moderately severe episode at the hospital, I was trying to sleep through it, but was only managing to drift in and out of the not-really-asleep, not-really-awake state that I often slip into at those times, and at some point I became aware that other people were in the room with me, which caught what attention I could muster at that point. I heard someone say my name from behind me and looked over my shoulder for the source of the noise, catching sight of a couple of nurses in the vicinity of the EEG equipment that was nestled in an alcove in the wall opposite the bed, and the neurologist, who asked me something about whether I was taking any pills, or about whether I was supposed to be taking any pills, or something along those lines.

I mumbled "No, no pills.", turned around and passed out for a while. Later on, once I'd come around and was back to normal, one of the older, more serious-looking nurses came into my room and told me in a very solemn and grave manner that the alarm on the EEG had been going off, and she mentioned something about people sometimes having mild seizures. She left, and I made a mental note to look into what neurological events hospital EEGs are typically configured to recognise and generate an alarm for once I was back home. [1]

I had a few more episodes of a similar severity after that one while I was at the hospital, which is business as usual for me when I'm off my meds. I remember nurses coming into my room numerous times and asking if I was okay, even going as far as poking their head around the door of the bathroom to inquire as to my well-being while I was trying to take a piss after waking up a couple of times, which was understandable, if a little surprising when it happened; I've lost conciousness and collapsed a couple of times in the past after waking up and going for a piss, and I have a scar just under my left nostril where I once whacked my face on the toilet seat on my way down.

I'd originally been referred to the neurologist after raising the possibility of narcolepsy with my psychiatrist, who had her doubts but gave me the referral anyway, and the neurologist had said that it didn't sound like classic narcolepsy, but fortunately had still offered to arrange for the VEEG study.

I expect to get the results in a couple of weeks, but with the clues gleaned from my time in the hospital, a little reading online, and discovering that my mum had epilepsy as a child but grew out of it and had forgotten about it in the subsequent decades until her brother reminded her of it when she mentioned my VEEG study to him (her memory really is that bad), my suspicion is that the neurologist will tell me that I'm having simple partial seizures. It had never occurred to me before that my episodes could be seizures, but now that I've learned a bit more about them, a whole lot of things about me have started to make sense.




1. From what I was able to gather after a quick look online, EEG's are usually just configured to generate an alarm for seizures, but please send me a message or leave a comment below if I'm mistaken.

Gretchenfan76 - "EEG alarms usually are set to detect any brain wave activity that is a bigish jump."

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[Gretchenfan76]

Simple partial or even complex partial sounds like it could be it.. I have both as well as the generalized tonic clonic convulsive seizures and a few other types// but the tiredness weakness out of it pins and needly feeling sounds so spot on to what i get alot.. EEG alarms usually are set to detect any brain wave activity that is a bigish jump. Hope all is well

[Peter5930]

@Gretchenfan76 Thanks; I've added your comment about EEG alarms to the video description.

[Gretchenfan76]

@Peter5930 :) di you get the results of your EEG?

[Peter5930]

@Gretchenfan76 I got an appointment with the neurologist for mid-July, and I won't find out the results until then. Sometimes, things move sssslllllllloooooooowwwwwwllll­lllllyyyyyyyy.

[megan0123456]

My dad is about to go in for a week long EEG telemetry. I know exactly how it feels to be waiting for appointment after appointment after appointment.. You just want to know results and what's happening.. Takes over your life .

[Gretchenfan76]

@Peter5930 Omg that's SO long away for an appointment!! I hope the next few months go by quickly for ya! I was due for a 2 week VEEG starting the 11th but I'm not there, my insurance said nopppeee because I've had so many!