Going To Be Away For 3-5 Days From Mon 1St Aug 2011

[ItchyTasty]

I'm going into hospital to have further tests (video telemetry) done for my epilepsy and they said max 5 days, but could be about by 3 days when I induce a seizure off with one of my seizure triggers(caffeine),but might take max 5 days till I get the results from the test.

[warpiper]

good luck with that. I remember when I was a floor nurse we did that all the time on my unit. Now that I am in the neuro ICU, we do the more invasive version called grids and strips where they electrodes are placed directly on the brain. They see if there is a focal point for the seizure activity, and if it's in a non-eloquent spot so they can resect it and therefore remove the seizure trigger. It's pretty amazing stuff.

Good luck!

-piper

[ItchyTasty]

Just got back about 30 mins ago.

Fucking hell, I'm NEVER EVER going near that place again.

Was confined to a room with a wired EEG glued to my scalp which was very restricting and uncomfortable. As it was wired up to a big machine and couldn't move much out of my bed except to go to the toilet as the lead was about 3m.

Also there was a video camera(eyeball type thing that moved about) and mic in the room. (video telemetry) and a panic button.

Hopefully it's been properly diagnosed this time to what actual types of epilepsy I got and then will be put on much more suitable better medication.

On monday and tuesday morning,I had 2 epilepsy triggers of mine induced: caffiene and a flashing strobe which the first one which was a high caffiene dose triggered it off severelly.

I do NOT get the classic epilepsy, so was semi-concious and felt like I was going out-of-body/ floating above the bed whilst jerking about which I could see. Completely fucking nasty experience.

Especially as I had clusters of them in a row.

Also it was even hotter there(30 degrees c and humid as fuck) than it is here in london. I had the most splitting migraine EVER after the rows of seizures. Paracetamol didn't help much, I just had to drink TONS of water and have a tower fan blasting cold air at me whilst lying in a dark room for hours and hours. As I felt very nausea, dizzy, vertigo and my head felt like it was in a vice.

Was going to be given tramadol for the migraine by the useless nurse until I asked what the side effects were and she said one of them was to be used in caution with people for epilepsy. Oh great..... Thank fuck I asked her the side effects or something dire might have happened. I'm pig sick of nurses etc that are useless like that and try and prescribe things without consulting the doctor first.

Tuesday evening I had probably the most EVER non-induced epileptic seizures lasting a few mins each in a row, 9 of them about in total. And the bastard NHS staff wouldn't give me any diazepam to stop it(because they wanted to record them all) which led into probably the worst panic attack I ever had I was shaking as bad as someone with parkisons(nothing given for that either, total cunts), with extreme anxiety, extreme stress and fear.

I fell asleep at 11pm last night which is very early for me and woke up at 7am which is very very early too for me. I feel not quite right today(very dreamy/in a trace like state with brain fog and also very lethagic, very tired and drousy, hope it's just funny sleeping hours, not brain damage from the amount of seizures I had.

Although they weren't the classic epilepsy which is tonic-clonic/grand mal which those type do damage the brain after 5 mins continously.

[warpiper]

I'm sorry to hear you had such a rough time at least it only took a few days. i have had patients there for over 2 weeks waiting to seize, it must be tough. we usually have the attending do a read after just 3 of them so that we can re-load our patients with AED's so they won't seize anymore, but that's just how we are. I work in the ICU now, and we literally cut a patient's skull open, lay a "grid" which is leads in a silicon mat directly onto the brain to get a more detailed picture of where the seizure is coming from to determine if it is resectable. it's pretty spectacular, because it makes it so many of our patients can go medication free and never have seizures again.

[AutieAB]

I sympathise - I had the same test done to me when I was about 10 years old. Suffice to say, it fucking traumatised me. I had one bona-fide blacked out, twitching limbs seizure with an obvious trigger and that was followed by all sorts of poking and prodding of my brain. A CT, an MRI, an EEG and a sleep-EEG and probably some other stuff I don't remember.

I have no idea how long I was there for, I was doped on barbiturates (which made me violently sick) the whole time. It was supposed to be a sleep test so I assume it was at least a full night. I don't think I was there for more than a full day but honestly, I can't be sure. The room was blacked out and I was doped out of my head. Being the stubborn bugger that I am, and being way off my routine which messed me up to start with, I fought the sedatives for as long as possible so they re-dosed me to make me sleep which I guess is why I was so out of it.

After it was done and while I was 'coming down' from the drugs, I suppose, they used acetone (nail polish remover) to get the electrodes off my scalp. A couple of people pinned me to the chair while the nurse scrubbed my head while somebody else held a kidney bowl in front of me for the aforementioned barfing. I had long hair and the glue got all tangled in it. It hurt like hell & apparently my screams could be heard down the corridor. I'm told that I "wasn't quite right" for several days afterwards. To this day, I cannot be around anybody when they're removing nail polish. Even the slightest whiff of acetone makes me feel violently sick and brings back unpleasant memories.

The result of it all? Abnormal waves seen in the temporal lobe but otherwise "inconclusive". I was never diagnosed with epilepsy or anything related and I never had any more episodes like the one that triggered the tests. Nowadays all I get is what is probably a simple-partial seizure once in a blue moon - a weird feeling of deja-vu (and people who have never experienced it really don't know what that term means - it's an almost indescribable feeling, like a fight is going on between the eyes and the memory and they can't agree about whether what you're seeing is 'live' or a memory). It lasts a few seconds and then goes away for another year or so. I avoid strobing because that can make me feel very strange indeed. Like you, I'm NEVER doing a long-duration EEG again!