VEEG ...date confirmed :)

[jayde-101]

well i had my letter through yesterday from oxford and my VEEG is on the 17th september (at the moment) im on the cancelation list just incasse... im only being admitted for 4 days which is a little worrying as since i dont know when my period will be i wont be sure if it will happen when im in hospital ... ill prob have the little minor ones that wake me up numerous times a night but when ive had normal eeg's they have never been "picked up" or as the lady says "theres to much muscular movement in the face interupting the electrodes" ... :| ...

my minor "partials" consist of a twitch that starts near my right ear and then quickly spreads along my jaw my tongue feels like it gets pulled back and my mouth/jaw/tongue all feel numb and i exsessivly drool ive never seen so much dribble which some times is stained with blood where my jaw has clamped shut and ive bitten my tongue ... sometimes that wears off in about 2 mins but if it lasts longer then it spreads down my arms to my waist then if it gets furthur than my waist i loose conciousness and thats when a tonic clonic happens

these always happen when im asleep ...and something wakes me up seconds before it starts which i find a bit funny :/ .... they are always after midnight in the early hours

and i rarely get them i have a nap ...and i mean hardly ever!

so i really dont know what to think at the moment i saw the neurologist on the 4th july ...and she still saying that its pyschological seizures and that it is stress related :|... i got cleared by my neuro-pysch and ive been off work cause of it since feb im not stressed out at all *shrugs*...she also said that she doesnt believe that its linked to my cycle or to the fact i have PCOS ... even though i always have my tonic-clonics on the first 2 days of my period (am usually hospitalized each time i have a period :/ not fun)

i would like to hear peoples views on this and some advice as to what i should do !!! im at a loss with it all at the moment

thanks my lovely CWE friends *hugs*

 

[julie wishes]

Um... I think you know more than her. ???? I think you should bypass the neurologist and call the place doing the study and just say you have a family event that day and need to reschedule if possible and give them the dates of availability during your period.

 

[LJ-Bain]

I find it very disheartening when they don't listen.
It's as if we're not living with the seizures or noticing trends.
They are our bodies after all.
Sometimes I feel like they are just trying to placate us...like how could we possibly have enough intelligence to understand what's going on?

I know what you mean about removing stress from your life but then they say, oh, it's stress. Really? Again...how would we know if we were stressed, right? We're emotionally invested in our lives and seizures are stressful but once they place a label they stick with it.

I wish I had advice for you. All I can offer is empathy. I hope they do listen. I would do the veeg regardless...you never know what it may pick up.

 

[Silat]

Any way you could get a new Neurologist?
I wonder if she realizes stress is a trigger for epileptic seizures too... so saying "stress is involved" is kinda pointless because it doesn't narrow anything down from a diagnostic standpoint?

 

[pita300]

I had a video eeg last month. I had a number of episodes, seizures, spells. Whatever you would like to call them. The epileptolgist says I have seizure activity showing on the EEG just not when I have one of these what ever you call them. He thinks they are stress related. Im seeing a neuro psychiatrist and a therapist. I am being treated for depression and I have a stressful job. It is the most frustrating thing in the world. I just saw the epiletolgist last week. He still believes that they are pseudo seizures and would take a lot of convincing to get him to change his mind. I know and understand your frustration!