Useless VEEG?

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Stewie

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I've been in a hospital bed since Monday morning (march 3rd) doing my video eeg tests.

So far I've had absolutely no luck what's so ever. Today being Sunday march 9th, is the first day here that they haven't given me meds (they've been tapering me off during the week, saying it's to dangerous to just cut the pills out all at once). On a normal day I would take 150mg dilantin + 250mgs lamotragine in the morning followed by 200mg dilantin/250 lamotragine at night.

I've had the strobe light tests, sleep deprived etc and for whatever reason I cannot get a seizure :(

Before I had my first seizure I would have 20+ auras a day before ever having my first seizure and finding out I had epilepsy. On a weekly basis while on pills I'd still get 1-2 a week, but now that I'm here...I can't get one for the life of me!!!

Like I said prior, I've already done a 48hr sleep deprived run, strobe lights, heavy breathing, and the most I can get is the system to shout out "seizure detected, seizure detected" while I'm just sitting there normally. Does anyone have tips as to what I can do to possibly bring one on?

I've been here a week, I an stay 2-3 weeks, and if nothing, I go back home. To get in here was a 2 year wait list...I was put on the list after my first seizure in 2012, so if this doesn't pan out I'm kinda shafted.

My drs have said stress can bring them on, and knowing that I won't be able to go to the fire dept. is beyond stressful since I've invested years of school and training to have my dream job.


Suggestions?? Any tips on how I can help them happen? Or should I just hope for the best since today is my first full day without any meds?


:(
 
I had the same problem. It was my 12th out of 14th night that finally produced something, when normally I have seizures every 4-5 nights. Once I was back home and on my usual routine, the seizures resumed their usual pattern. Go figure.
Now that you're off medication it might make a difference. Try continued sleep deprivation at night with our without catnaps during the day, taxing your mind with stressful/intense card or board games with someone, video games, talking on the phone - or preferably visiting - with someone who may tick you off or otherwise trigger an argument (I'm not kidding), exercises while you are confined to bed (isometric exercises or ask if the physio dept. can lend you some bands or dumbbells), some monitoring depts allow supervised time on an exercise bike, if caffeine is a trigger ask if you can overload on caffeine . . . Eventually the stress of being there, confined to bed, along with the stress of no seizure may lead to a seizure. The fact that the sensors are reading "seizure detected" might be meaning that the device picked up some kind of interictal spike - or are these confirmed false alarms?
 
They say the alarms are quite sensitive, ex, I was chewing on some licorice and the alarm went off. They said my jaw being clenched over and over again made it think otherwise. But, I've also been women up in the middle of the night by nurses asking me the "post event questions". They ask me if I just had one, but it's useless since I've absolutely no memory of them happening. I've been walking through the mall, get an aura, 2 seconds later I'm face first on the floor. I'll come out of it to people huddled around me saying what happened and I completely deny all of it giving some random excuse like 'I was tying my shoe and fell over', and then I get outta there asap.

My girlfriend comes everyday, she keeps me on my toes. We'll play crib/chess/poker/scrabble/checkers etc, stuff that would make me think a lot.

As for sleep depriving myself, I haven't slept/cat napped since Saturday morning, and I don't drink coffee. Usually as long as I'm talking I don't get tired....so I harass the nurses at night, make them talk to me etc. My rooms across from their reception area place where they monitor everything, so I can just talk and they can hear me.
 
The Only Time VEEG was useful for me was before my first resection in 08 since I was haivng all nocturnal TC's all I had to do was sleep and I was gaurenteed to have a few. But then in 13 I had intracranial VEEG monitoring and only had 2 seizures in 3 weeks being there and my neuro said the one big seizure didn't count cause it "didn't follow my normal pattern" and cause I went into status...pssh whatever. Its very frustrating doing those things since most of us have certain triggers that are part of our daily routines that once we are in the hospital just laying there watching springer don't occur and then we don't have seizures..
I hope the doctors can get the info they need for you.
 
I was hooked up at home for three days. Not a thing until I asked the doctor to review the video regardless of nothing showing up on the EEG.

Have you had anything happen that you think SHOULD have shown up on the EEG such as an aura/simple partial? That can happen.

I understand your frustration.
 
Hey Stewie -- try skipping meals and doing vigorous exercises where you go from sitting to standing and put your hands over your head. If low blood sugar or low blood pressure are triggers, that may help.

BTW, many folks with epilepsy never produce a positive EEG. This doesn't mean they don't have epilepsy, just that the neuro needs to make the diagnosis based only on clinical symptoms. If your neuro doesn't feel able to do so, ask him about consulting with another neuro, and/or about trying anti-seizure meds to see if they help.
 
I'll be finding out today if what they have so far would be enough to continue with surgery, but be hooked up directly to the brain during the surgery to remove the arachnoid cyst that caused all of this. If they don't feel it's enough, then they'll keep me here longer. Reallllllly hoping to be out on Friday though hahaha, my brothers son is being baptised on Sunday so I was hoping to be there lol
 
Good luck! Hope your brain does what it needs to do...
 
kinda depressing, i spent a week in the hospital hooked up no meds aggravated no seizure for a veeg,

had a grand mal walking out of dis-charge. passed out.
 
Much success :D

Had one of them big ole whopper seizures where they had to inject something into the catheter in my arm to stop me from convulsing :D

I wanna go home and play with my dogs :D
 
They got everything they wanted.


But now they want more...so they want me here for another week >.<
 
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