2wk EEG - Is it worth the risk?

[Wobblez]

Hi everyone,

I need some advice. I saw my Neuro today and we discussed whether going into hospital for a 2 week EEG was worth the risk of "stirring up" my currently well behaved epilepsy, by sleep depriving me and taking me off my medication suddenly. She said that sometimes its like letting the devil out of the box, and once its out it can be very hard to get back in. A reasonable portion of her patients even have to change their meds entirely because they struggle to regain control of their epilepsy, once their seizures have been provoked. Others are back on track and driving within a month.

Although she said she does have some small doubts over my diagnosis (the main reason for video EEG), she says the proof is in the pudding, I have a childhood history, positive EEG's and I'm well at the moment so the meds are obviously working. Even if they were psychogenic seizures, she would treat with Lamictal anyway, so nothing would change.

A big part of me actually wants the label, "EPILEPSY" not only to rule out anything more sinister, but also to remove the "what ifs" and the stigma that I have had to deal with....people telling me its all in my head, i'm just stressed, blah blah blah. But then I wonder if i'm prepared to risk my health for a definitive answer?

I asked how much control I have over the procedure. I can reduce my medication slowly, and if they get a reading on a simple partial I can choose to stop there. Having a 2 week slot available to me means I could do things more safely, but she did say they generally need a medium level seizure for it to show up. This is where it gets tricky, because missing one dose is most likely to cause only a partial if that, but who's to say I will have control over any clustering after that, because I also have to take into account the time it will take for the medication levels to return to normal. And when you have one seizure, do you find it encourages more?

Would really love your thoughts....

 

[Soniag]

if you are really unsure about going through with it then don't do it. you don't want to risk changing your medication again and then possibly having more seizures

 

[qtowngirl]

i disagree with sonia (sorry), it is def worth it. it's one of two things wobblez... go through life not knowing or get it done now, accepting a few risks, to get the answers you need. it is true that a simple partial is not enough, i had a grand mal when i was in and just to be safe they wanted more (had three altogether). and if you're in two weeks, chances are you'll be off meds completely. i tapered quick and was off them by day 5 or 6.
mind you, i wasn't in there for the diagnosis, it was to check out the lesion location and decide on surgery, but at the end of the day it's all the same. not knowing is not living, too stressful and stress causes seizures anyway.
just imo, but i was in almost two weeks too and i'd never take it back. you bet, the first week after getting home sucked, was spacey and irritable and didn't feel like myself at all, lots of crying, trying to get back on dose and feel like me again. and then it was all back to normal and within three weeks i had all the answers i needed.
to me it's simple, if you don't do it you won't know.

 

[pita300]

Here's what the epileptolgist told me after my 5 day veeg in June last year. He told me they do the longer VEEG to rule out PNES. If it was truly PNES then most of the time the seizures don't come back after the veeg I believe that he was trying to rule out the PNES. At that time I'd been on Tegretol for ever to control the tonic clonics and I had just started my journey on Lamictal because the seizures now are simple partials not tonic clonic The only medication he took me off of was the Lamictal. Taking me off the Tegretol would only cause the T/C which we knew I had so why change it. Now qtown before you start on me hear me out.:bigsmile: I've had a lot of time to think about this now. qtown in your case there you were already diagnosed. Your purpose was location and weather you a good candidate for surgery. Wobblez did you go a while with out a seizure while on the medication? I went 15 years with out a seizure. I was in a very stressful situation with my job and it finally put me over the edge he had to rule out the psychogenic. That's why I had 4 EEGs last year and the last one is when I finally proved that it wasn't in my head. Wobblez.. The only thing I would question is why 2 weeks? If your not a candidate for surgery 2 weeks seems to me to be a long time. Next question are you seizures different now then when you were a child? If the doctor knows whats going to happen when they take you off the Lamictal I would have to question that with if it aint broke don't fix it!
There's my 2 cents Good Luck!

 

[qtowngirl]

hi pita,
-you went 15 years without a seizure after you had brain surgery (yes i know they got worse right after the surgery but to end up going 15 years has alot to do with the lobectomy). so, n/a in my books as far as what wobblez is dealing with. investigation is the first step.
-more often than not they do the seizure unit to see if you are a candidate for surgery.
-when you have a life with seizures, something is broke, hence meds/doctors/units/etc.

you make some good points but i still say its worth it. wobblez you may have a tough time getting back on track after doing it (and you may not, it's anyone's guess how your body reacts and if you even do have a seizure)... but atleast you tried. learning about ourselves and being very pro-active is the smartest thing we can do.
not doing something useful simply 'not to make waves' is more scary imo than reaching out there and gaining knowledge.

note: you're in a skilled and controlled medical environment, they're prepared regardless of what happens

 

[pita300]

No The 15 years was due to the lobectomy and the Tegretol. If the Doctor had taken me off of the Tegretol during the veeg it would have caused 1 result grand mal. If we know that why change it. My point is If the medications is taking care of it why mess with a good thing. Look I Know what its like to have the pnes label and it sucks and I understand why Wobblez wants the epilepsy diagnosis. There is nothing worse then the doctors, your family friends wondering deep down if that was real or just an attempt for attention. qtown we'll just agree to disagree! Wobblez just know were all behind what ever decision you make!

 

[qtowngirl]

sigh. *shaking head* i still have a rebuttal but yeah okay... i'll let ya have this one P, agree that we're behind ya wobblez no matter what.

 

[pita300]

you know this would have been a good discussion at a bar while having a beer!
Its ok to have a heated discussion about something we are both passionate about. We can both be proud that we gave Wobblez plenty to think about. What ever she decides she will definatley go into it informed and confident of her desicion. No hard feelings?
Absolutly none here

 

[qtowngirl]

no of course not!

and i agree with you about the beer, lol i read this quick and actually thought you said we gave wobblez plenty 'to drink about.'
:roflmao:

 

[pita300]

Well hey I'll drink to that! :roflmao:

 

[MuayThaiFighter]

Honestly I think you should do it. I won't lie, its tough. I think the worst part for me was the withdrawl from two medications, ugh that was killer. I left the test with the neuro shrugging his shoulders and cut my Keppra and yeah I never felt the way I did before the test. Then again your situation is different, your Dr. said you'd go back to your meds anyways. So you might have a rough time for awhile after, but with time things should settle out. I figure getting a clear diagnosis in my opinion is worth it. Best of luck.

 

[Nakamova]

No easy decision. One way to approach it is to consider how prepared you are to deal with the outcome of the choice you make.

And here's another [admittedly very minor] reason for doing it -- you get to feel what it's like to be off meds, however briefly. And you're in a safe place while it's happening.

 

[pita300]

No easy decision. One way to approach it is to consider how prepared you are to deal with the outcome of the choice you make.

And here's another [admittedly very minor] reason for doing it -- you get to feel what it's like to be off meds, however briefly. And you're in a safe place while it's happening.

Voice of reason heard from and the best advise i've seen so far!

 

[qtowngirl]

No easy decision. One way to approach it is to consider how prepared you are to deal with the outcome of the choice you make.

how true nak. never would have thought of it but looking back that is exactly it. i don't think i would have been so into the unit if i wasn't somewhat prepared that surgery would be the result.

 

[PFunk]

Here's my :twocents: if I was in your shoes, given how unreliable EEGs are, I wouldn't risk it. Is an affirmative diagnosis worth the havoc that could come from it?

I luv yah Q but now I have to contradict you Sometimes in life you have to accept that some things aren't worth knowing

Nak does have a point in that you would feel what a med free life. I would love to have a med free brain for a day. I imagine I would be wicked smart but reality might not agree.

 

[qtowngirl]

Here's my :twocents: if I was in your shoes, given how unreliable EEGs are, I wouldn't risk it. Is an affirmative diagnosis worth the havoc that could come from it?

I luv yah Q but now I have to contradict you Sometimes in life you have to accept that some things aren't worth knowing

Nak does have a point in that you would feel what a med free life. I would love to have a med free brain for a day. I imagine I would be wicked smart but reality might not agree.

well P i guess it depends how bad your E really is. and, now my two cents haha again), you and i have it different b/c we know, we've been diagnosed and have accepted it and do what we need to do. would you feel different if you had seizures for years but they wouldn't give ya a final answer?
i'd get pretty tired of that, and if there was a test that may help define, i'd say that's life. everything's a risk right, no one's always safe and if you can take control in one area and be allowed to make your own decision, well, ya know

 

[pita300]

Ok..... I thought we decided to agree to disagree. now were starting to beat a dead horse. I think we've already scared away poor Wobblez. Ultimately its her decision and as her support we all have to support what ever decision she makes. We've all given her our opinions Now lets sit back and wait her to make that decision so we can support her!

 

[qtowngirl]

actually that was me and Pfunk there darling.
and yes it's a bit much but everyone throwing in their two cents is good, all walks of life on here. and yes, we support ya whatever you think is best wobblez

 

[Wobblez]

WOW, THIS IS AWESOME!!! Thanks everyone, really appreciate you giving me so much to "drink about"! I checked this post a day or two after I'd posted it and there were no replies, now I see I've missed a whole conversation!

I guess reading your very helpful posts has lead to me to my main question...am I naive to think I/the nurses have a certain amount of control as to how far we could push my body? If I could have a couple of complex partials, they get their readings and get me back on meds and recovery, I would be so overjoyed with that. I see that as an acceptable amount of stress on my body, for big gains. And yes, knowing what I'm dealing with and removing all what ifs would remove that nagging stress for me. I would be able to deal with it and forget about it, instead of constantly thinking "whats that??" when I have a weird sensation.

I've only had unquestionable and EEG proven t/c's as a kid, the two I had in hospital in 2010 were questioned as possible faints with convulsions. My mum saw them both and swore blind they were seizures, but don't ask me, I was unconscious.

I've spoken to a friend who is a nurse, and another friend of mine who have both said its not worth the risk, but I knew that it some ways your opinions would be more relevant because everyone on here knows what its like to be the patient. And how long it takes to go through your whole history when you go into hospital because each and every nurse then wants to attempt to diagnose you.

Nakamova, you make a good point about being med free. I have been med free for 10 years, but I was only having very occassional auras and was supposedly "grown out" of my childhood epilepsy.

Peta300: The hospital gives you a maximum stay of 2 weeks, to allow for medication withdrawal and enough time for seizures, as I can be quite sporadic. I was put on the waiting list 12months ago and now I know myself a whole lot better, I feel auras coming on if I'm late taking my meds, even by a few hours. I reckon I would "perform" in the first few days!

Qtowngirl, I agree with a lot of what you are saying, and a diagnosis would be valuable in so many ways. The self doubt, wondering if people are second guessing you, wondering if you actually need to be eating tablets for years on end etc.

Why did you need to have 3 grand mals??? Were they not prepared to catch the first one?? That seems a bit risky to let your body go that far, but did you get an accurate diagnosis of epilepsy and location? Did it change how they medicated or treated you? Was it helpful in the long run?

I also wondered if it would help to have a concrete diagnosis in terms needing time off work if I'm unwell? My GP puts it down as epilepsy anyway, but it is hard because sometimes I feel like I have to explain myself to people.

 

[qtowngirl]

a gp can't say you have epilepsy, and they have to acknowledge they're not trained to make that diagnosis. only a neuro or epileptologist can do that.

i had my E diagnosis in 2003, no confusion there. the reason for the unit (and wanting more than one grand mal) was b/c they wanted to be EXACTLY sure if/and if so where, they would be operating. i actually was good with them wanting more - if it helps them be more precise in their decisions them i'm all for it. just sucks it took so long. they didn't happen until the 15th day then i stayed for another couple days to get back on meds and feel comfortable.

the only prob i had with some of the nurses was they insisted on the door staying open at night when my bf was nodding off. we said we would be shutting it for the privacy. if i had a seizure the whole floor would go off with alarms and they were more than welcome to come running in, but until then we said, 'this is stressful enough can we pls have the privacy.' and lol if they tried keeping it open we'd get up and atleast shut it half way. most were cool tho, one even kept it shut for us.