night e.e.g

[crazychick]

has anyone had a night e.eg done and do they work? im having a fight with my neuroligist to get one done. i think a night one would be better as my seizures only happen in my sleep. any comments or suggestions would be a big help

 

[Nakamova]

Keep pushing for a nighttime EEG, since that will be the most likely to register a seizure. For daytime EEGs, they usually ask you to stay up all night beforehand, so that might do in a pinch, if you are able to fall asleep during it.

 

[crazychick]

Well i think its the only way there going to find out what it is as seizures only gappen in my sleep. My nirmal eeg and brain scan came back normal. So i think a night 1 will b better. They mite find out what triggers them ir diagnose what it is but they keep saying no. Do u rhink a night 1 would be better?

 

[Nakamova]

yes, go for the night one.

 

[crazychick]

yes i will thanx, im going to keep on at them to do it i think it will help loads. it will be worth a shot i think.

 

[Ann T.]

Hey, Crazychick. What's puzzling to me is, WHY is your neuro so resistant to your suggestion of having a night EEG, ESPECIALLY when YOU know when your seizures happen?! Definitely push for the night EEG. Now, for the night EEG, you'll have to stay up for @ least 24hrs the day before you actually have it & you'll be tapered off any AEDs you may be taking in order to trigger a seizure. You may be hospitalized for a few days so enough seizures can be recorded to figure out what steps to take to best help you achieve night-time seizure control.

 

[crazychick]

Hi thats ok if it means they find out whats causing them. I want to know why my neuroligist is against a night e.e.g aswell. Im def gonna push for it. It makes sense to have a nite e.e.g doesnt it? my neuroligist doesnt know what hes doing am sure of it.

 

[nicholas:)]

crazy Chick.. I had a night 48 hour eeg and video telemetry and a 24hour eeg but all came back normal! The night before the 48 video telemetry I had 12 fits but none whilst I was being monitored. The neurologists also depend on family history, your history (keep records) and witness statements (have some if you can). Be persistent and assertive. Keep regular GP appointments and don't be intimidated.

Nick

 

[crazychick]

Hi nicholas. My brain scan amd eeg both came back normal. I only have fits in my sleep which is y i hink a nite 1 mote help. There is no family history no one has epilepsy in my family eithet sides. My mam had orobs wi her hormones n had to have her womb removed but no fits. Im wondering if its hereditery but mines a worse case. The doctors will not answer my questions and just ignores them totally. What type of seizures do you have nicholas?

 

[nicholas:)]

Hi-ya! my fits are nocturnal and if I try to sleep in the day. I'm aware of my fits which makes me really cross when the GP and Neurologist doubt me or question my fits. I think I have them on my side now, well at least they give me meds if not a diagnosis!

 

[crazychick]

I havent been diagnosed either. I was told ur havin seizures take these tablets. Mine only happen in my sleep. I have no recognition of them. There not sure if its defo fits im having. They happen same tym every month. It makes ya sik wen docs dont believe yadnt it?

 

[nicholas:)]

yes- it does! I said to my GP then if I haven't got epilepsy then why am I on the meds, She replied the meds are to treat the symptoms!!!!

 

[Nakamova]

In the absence of a positive EEG, the other way to diagnose epilepsy is by the actual symptoms and whether they respond to anti-epileptic drugs. So I'd say your doc is being a bit disingenous!

 

[crazychick]

Nicholas thats wat i said an my doc replied pretty much the same thing. Nakamova i just wanna know if i actually have it or not its driving me crazy now.

 

[Nakamova]

I hear you, I'm rooting for you to get some tests that will give you concrete answers. And to get better neurologist.

 

[crazychick]

Thank you nakamova. Its gone on too long and it needs sorting. If this neuroligist does nothing im going to ask for another 1. even if i have to travel. Hows things with you?

 

[Nakamova]

My seizures are controlled, thankfully, but like you I'm not fond of the side effects (skin and vision problems mostly). They are tolerable so I'm not going to switch meds, but like you I'm always searching for ways to counteract the side effects.

 

[nicholas:)]

my vision is pure since going on Clonazepam- see, I meant poor not pure! I suppose we cannot take these drugs and expect perfection in every thing. This may seem ungrateful but after two, three or more years having 8-12 fits a night, I am missing them- missing the habit and routine and having something to talk about every day- odd do you not think? I guess I'm not use to being fit free!

 

[crazychick]

If it was only the vision i could up with that but im just abouthaving every side affect there is with keppra. I cant ait to get my meds changed. Oooo no nick i dnt miss my seizures 1 bit.