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-   -   so they think its seizures... (https://www.neurotalk.org/epilepsy/216626-seizures.html)

Bruins88 03-03-2015 09:34 AM

Thank you. Evidently they thought I was sleep deprived, oops. Cognitive mistake I guess.

Sorry if it sounds like im just whining. Just scorned from the other doctor. I have no knowledge of seizures but some things sort of make sense. Only thing I cant wrap my head around is why I seem to usually be aware, although in a really confused trance, when they happen a good portion of the time. Plus they seem relatively short. So im confused. Just hoping this dr will take me serious.

Also starting to really wonder if the weird smells are something to do with it because its usually followed by one of these spells of staring. My neighbors say Ill go outside and aimlessly wander about the driveway confused and ocassionally scream some angry stuff but I dont really recall those.

My left hand also will go completely rigid and stay that way for a little bit of time, no rhyme nor reason.

pogo 03-03-2015 07:18 PM

Weird/bad smells, bad tastes, and so many more things are common with simple partials. Things that affect your cognition/awareness/memory move into complex partial territory. Often the sensations during the seizure strongly indicate where the focus is, but sometimes the focus starts in a silent area and the seizure go through or ends in another location that gives the sensations. Hope you can get a better neurologist, preferrably an epileptologist.

Bruins88 03-04-2015 07:40 AM

Thanks for the replies. Came back from the neuro and had one of those zoneout staring spells a few times after sitting up and hyperventilating for 2+ minutes. Scheduling another eeg, but seems like that if an eeg doesnt show it then it must be a convergence seizure or something. He says eegs always show them. Hes really old, but was very good, best one ive had so far at least. Hes convinced though they are complex partial seizures based on what my wife and I described and what he saw. Wants me to switch to valporic acid and topamax I believe?

pogo 03-04-2015 10:04 AM

I've never seen a published study assert what your doctor is telling you. I've seen plenty say otherwise. Something like 90% of people with seizures get some kind of telling activity on EEG after three or so EEGs (and sleep deprived or extended monitoring helps that happen).

Bruins88 03-04-2015 10:42 AM

Wouldnt the eeg come back normal anyway especially being on seizure meds? Seems counter productive in a diagnosis to be honest.

Basically if it comes back normal again ill just look like a psycho? Awesome.

pogo 03-04-2015 01:04 PM

Oftentimes they lower the medications for extended monitoring so they can get better results. But it sounds like you are still having episodes so you might have something show anyway with a sleep deprived EEG. (I'm considering asking for my daughter to have another EEG since she is still having seizures, maybe there is something else worth noting that would help decisions regarding her treatment).

Some doctors often don't believe it is epilepsy if an EEG is clear even though they should know better, so a neurologist who isn't aware of that is not the best doctor to treat you. I would hope your doctor was just trying to reassure you and not give you the fussy details. Our daughter's surgeon warned us EEG had limitations when the first EEG was clear and I said something was wrong. He specializes in epilepsy surgery. Pretty sure Sue (Porkette) had seizures only show up on iEEG (not EEG) if she wants to give you a direct experience. Brief non technical write up mentioning there are limitations at http://www.webmd.com/epilepsy/tc/dia...topic-overview

Bruins88 03-04-2015 03:44 PM

Alright thanks.

This time ill make sure (its a sleep deprived one and clearly stated) im sleep deprived and dont drink caffeine before hand.

I remember loading up on melatonin the night before and actually slept very well at the time and literally woke up, made a coffee and went. Lasted all of 10-20 minutes.

Aye aye aye!

pogo 03-04-2015 05:08 PM

There should be instructions about other things to avoid for how long before the test (e.g. chocolate has caffeine). Ask for full patient instructions (if they don't have any, would really wonder about the quality given your prior experience).

Just a note that different kinds of seizure issues have different likelihood of showing up on EEG - absence (and often other generalized) patterns are usually easier and focal is harder (bad smell is a focal seizure, staring can be absence or focal). One can have both focal and generalized types or just one type.

What lasted all of 10-20 minutes? The sleep deprived EEG was longer as the person actually sleeps during the ideal test, our child's last one was ~3 hours.

Bruins88 03-04-2015 06:01 PM

Sorry, my eeg in the summer was about 20 minutes

Wren 03-05-2015 07:36 PM

I had at least a dozen eegs - 1990 to 2005 - including sleep deprived, fasting and so on. Every single one was clear. Finally a VEEG caused/showed a seizure on my 3rd day in the hospital.


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