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  #21  
Old 01-19-2019, 10:57 PM
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Originally Posted by Loopy Lou View Post:
For those who have had video EEG's before, did they allow you blankets during the night? My body temperature drops a lot during the night, and being cold is pretty much the only thing that will stop me sleeping. I'm so worried about being cold and shivering, perhaps affecting the eeg!
I know every hospital would be different especially with every country. But with the hospital I go to for my epilepsy I wasn't aloud any sheets or blankets etc during video EEG or anything to cover me as they wanted to catch all seizure activity and felt anything over you could hide any seizure activity. Each monitoring room had their own heating / cooling which we could get set at own temp.
I had my 2nd video EEG in July which was middle of Aussie winter so I had winter pjs on and wore winter dressing gown at night so wasn’t too bad.

I took my laptop and phone with me for my 2nd video EEG but couldn't use them plugged in as it affected the machinery. So I would use them off the chargers then when they needed charging I would put them on the charger which was close enough to where I could get to from my chair. I also took some puzzle books.

Good luck , great news they got you in sooner.
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  #22  
Old 01-20-2019, 02:24 PM
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Just getting packed now, lots of nice warm pjs including a fuzzy onesie lol. I think i'm going to try and stay up as late as possible tonight (i have to be up at half 6) in the hopes that they'll get something on the first day. Tiredness, stress and hyperventilating seem to be my main triggers. I don't know if i'll have wifi on my laptop there, or if i'll be able to get the site on my phone, but i'll let yous know afterwards how it goes, i'm sure i'll be chatting to CQ at some point anyway
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Old 01-21-2019, 07:25 AM
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I hope it goes well and that you feel good afterwards. Good luck!
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Old 01-21-2019, 03:39 PM
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I told Lou I will update you guys as it takes too long on her phone.
There was a delay before she got put into a room but she's all wired up now & she has to sleep deprive tonight.

I have my fingers crossed it wont take too long before her brain performs.
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  #25  
Old 01-25-2019, 01:01 PM
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Am back now. Have a headful of glue, skin rash/blisters from the adhesives on my shoulders and face, and holes in me from cannulars (spelling?) gone wrong.

Unfortunately, from what the neurologist has seen so far, my brain did not perform as expected, and they don't have enough information. I didn't really press the button much except by accident, the nurses did a couple of times, but i think they may have mistook my normal sleeping as abnormal activity?

On the first night i was sleep deprived, and then meds taken away, then they did the flashing lights and hyperventilating the next day (i thought for sure the hyperventilating would do it).

I feel really disappointed that a half hour eeg 10 years ago showed more than a 5 day one. So the neurologist is saying now that it doesn't look like surgery will be an option. I hadn't even decided whether or not i would go for something like that, but it would have been nice to have the option.

For now i'm being referred to a neuropsychologist again, they said they noticed that i didn't recognise or couldn't tell which nurse was which, or name any of them even after seeing the same people for days, or that i'd forgotten if i'd taken my medication.

So yeah, i don't really know what to think. I won't get the full results for a few months until i next see the specialist in Liverpool again, but at the moment it feels like it was a huge waste of time and i'm rather disheartened.

Hopefully this pic works and won't be enormous, one bright spot was that someone was really jealous of my minnie mouse dressing gown lol. The cables are in that white thing going down my front, i tripped over it lots!

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Old 01-25-2019, 03:43 PM
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For now i'm being referred to a neuropsychologist again, they said they noticed that i didn't recognise or couldn't tell which nurse was which, or name any of them even after seeing the same people for days, or that i'd forgotten if i'd taken my medication.
I'm not sure that's particularly diagnostic -- I don't know that I would remember the names of the nurses either. Hospitals are very disorienting, and it's tough to keep track of all the personnel, especially if you're sleep-deprived.

If they consider doing another EEG, maybe they have you go off the meds right away, since it can take a while for them to fully exit your system.

I hope you feel better soon. Nice dressing gown!
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  #27  
Old 01-25-2019, 03:51 PM
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Thanks, i think i'm mostly just really tired at the moment, and feel really odd with having been off my meds for a few days. Waiting for my hair to dry after washing it twice and using half a bottle of conditioner (wouldn't want to risk blow drying it and cementing it!), still picking out chunks of glue. Then i think it's bed time, and man am i looking forward to my own bed!

Guess i'll have to wait a few months til i see the neurologist again and see if he saw anything while looking through the rest of the EEG and not just the bits that were indicated. Or maybe he'll only look at those instances, i don't know.

I think the real reason he's referring me to a neuropsychologist again is because he maybe thinks i'm having non-epileptic episodes as well as the epilepsy. He did say he's in no doubt that i do have epilepsy, but that there's maybe something else going on, or it's my attention span/concentration that's an issue also.
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Old 01-25-2019, 04:22 PM
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I know my neurologist has seen a lot of activity during regular EEGs that he has had done. I've usually had to skip 1 dose before them, or leave a minimum 12 hour gap.
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  #29  
Old 01-25-2019, 04:46 PM
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Originally Posted by Nakamova View Post:
I'm not sure that's particularly diagnostic -- I don't know that I would remember the names of the nurses either. Hospitals are very disorienting, and it's tough to keep track of all the personnel, especially if you're sleep-deprived.

If they consider doing another EEG, maybe they have you go off the meds right away, since it can take a while for them to fully exit your system.
I agree with Nak about the thing with the nursing staff, who would remember that stuff .

Did they forget there were probably quite a few medical staff coming in & out to see you, not to mention you were sleep deprived & once they took you off meds you wouldve been getting withdrawl symptoms.

I never knew any of the nursing staff names whenever i went to hospital, after my surgery it took me 12 months to remember my treating neuros surname so I used to just call him Dr Patrick (which was his 1st name) . I got a new neurologist in 2016 & I call him by his 1st name Saul, much easier then remembering his sirname.

Good luck with getting the glue out of your hair, it will take quite a few attempts & your head will probably be sore for a few days.
Enjoy that sleep back in your own bed
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Old 01-25-2019, 05:14 PM
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To be honest i think the meds have only just gone out of my system today, because i have such a headache! They only took me off the Keppra and clobazam, and kept me on briviact.

Guess i'll wait til next appointment and see what he says. Ahhhhh my lovely snug bed
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