Got a call about VEEG

[thornton8000]

So I got a call about having a VEEG to be done, they didnt say anything to stop my meds they want to do a 3 hour VEEG I'm going to call them back on Monday the 4th the day before my 32nd birthday, I have my new neuro for a 2nd opinion set up on the 21st of june so I'm thinking I should wait until I see him until I set up the VEEG thoughts? Since my primary neuro doesnt want to listen about PNES and AEDS. how AEDS will not stop PNES seizures and my seizures have stopped since adding a 2nd AED to my med mix.

Thoughts? concerns? ideas? or should I do both? at the same time?
thanks everyone!

Mike

 

[momof3boys]

So they want to do a 3 hour VEEG. When I had mine done, they admited me on a monday morning, and completely took me off all medications. I was on Keppra XR and Carbatrol ER. Both extended medications. The nurses there said it may take alittle longer to get out of my system, since XR or ER medications are slower at being released. Now I dont know if a 3 hour VEEG is going to show anything. Im no doctor, but for me, even taking me completely off all medications, no seizure activity was seen til at least 24 hours later. I had to have all the medication out of my body before the seizures began. So to me, I think the 3 hour VEEG would be a complete waste. But like I said, I am no doctor. I would go for a VEEG like what I had. Where they admit you for at least 4 days and if your doctor does take you completely off all medications like mine did, then they would see something pop up within hours or at least the next day. But everyone is different. I just think 3 hours is a short amount of time to see anything.

 

[thornton8000]

so like me and my wife you think like us! unless they take me off and wait till my seizures start up again it'd be a waste of time! thank you momof3boys!
I'm a dad of 4 girls and dad of 2 boys lol
so I understand about being busy and not wanting to waste my time with going and them not taking me off my meds when they have stopped my seizures completley now for almost 6 days give or take.
thanks again everyone.
CWE has been a great place to get advice!

Mike

 

[momof3boys]

I hope I helped! LOL Im just going based off of my experience. Everyone is different. But like my doctor said the first day I got admited, it would take sometime for my medication to leave my body, and he suspected the first day in the hospital I wouldnt have any seizures til the medication left my body. So why they would want to do a VEEG for only three hours, would be foolish to me. Some people happen to have seizures easily than others. For me, it took a good 24 hours after being admited before the seizures actually began. I had the aura feelings that night, around 18-20 hours after my last dose of medication. I know exacly how you feel when it comes to a busy schedule. My boys keep my busy and on my toes everyday!

 

[thornton8000]

I hear ya thats why when they said 3 hours I said call me back, and I'm going to wait till I get my 2nd opinion on the 21st with a new neuro, and see what his thougths are, and go from there, since even the person taking my insurance info knew that PNES and AEDS issue, that AED's dont stop PNES seizures lol so I have high hopes for the new neuro's!
here's to hoping!
mike!

 

[momof3boys]

Yeah I found that information out after I started seeing the psych dr in March of 2011. I saw her through June of 2011. The funny thing is that my neurologist never sent anything over to her. When I showed up for my first appointment, she asked why I was there? I told her about the VEEG and how my doctor was saying that when he saw me having seizures on the video, it wasnt registering on the EEG, he believed I was having non epileptic seizures and to go to her. Thats when she asked if I ever had seizures prior, and what kind they were. When I told her I had seizures prior, but they were totally different compared to what I had during my VEEG, she then got more information, which I told her about how my doctor "cold turkey'd" me and didnt expect anything to bad with doing that. She asked if I ever had that done before? I said nope, never. She was suprised that my doctor, being a specialist with epilepsy, didnt take that into account at how a person being on seizure medications since the age of 18 months old, would react to just having their medication being completely taken away like that. She then asked if they seizures stopped after being put back on the Keppra? I said yes they did. Right there, that stood out to her that the Keppra was controlling the seizures, which lead to her say that her gut was telling her what was happening was the seizures that didnt register on the EEG, that my doctor was seeing me have on the video, were too deep in my brain to be picked up by the EEG, but because the Keppra was responding to them and I was not having seizures after being put back on the Keppra, that they were indeed epileptic seizures. I went back a couple of more times and each time I got to report back to her that I had no other seizures. It was then obvious to her that I didnt need to see her any longer. She sent her notes over to my neuro dr and I saw him in August. a couple of months later. He agree'd that he would leave me on the Keppra XR. But he did make the comment that he wanted to try to get me off the Keppra again this year. Something I dont want to go through again. I see him in august again, and apart of me is not looking forward to it.

 

[thornton8000]

I understand!!!!!!!!!!!!
Thats exactly what I'm going through as well My shrink before said I was having complex partial due to blackouts and loss of time due to (split personality disorder) cant spell the proper term sorry lol, bi polar type 1 nos (schizophernia leadings thoughts of the new talk doc) but havent had any new stress or depression have been calm happy, and relaxed more so in a long time so I told my neuro the present one, and he goes well I'm keeping your diagnosis call me next tues and let me know how everything goes, and my wifes friend whos a nurse who interned in a neuro clinic said your hubby has inbrain seizures and they will never show on a eeg only on a VEEG only after they stop the keppra which works on inbrain seizures and is the #1 inbrain seizure med right now and thats why it worked right away for mike, and why is his neuro questioning that it worked so well is he slow? And my epi didnt like the fact that I did my homework before coming in and knew as much as she did before coming in so she wanted me out as soon as i got in lol, Good luck on your upcoming apt and let me know how that goes Momof3boys!

Mike

 

[momof3boys]

Its so darn frustrating isnt it? I kept telling my mom over the past year that I knew what my neurologist was thinking wasnt right at all. I had to proof him wrong though. a huge part of me didnt want to go to see that psych dr, but another part of me said, "screw it, lets show this neuro that Im right and he is wrong!". Thats what kind of attitude got me through all of this. Hang in there. I know its tough, but I agree with the nurse. They say Keppra is one of the best anti seizure drugs out there. Ive been on it since the age of 17 or 18 years old. Im now 31 and its worked great for me! I googled alot of things and came up with alot of information that backed things up. Saying how seizures can be too deep within the brain to be picked up by a EEG. Ive had several EEGs done before and there are abnormal activity on each one. I had the EEGs where I had to stay up til like 4am and only get two hours of sleep. It sucked, but everytime I had one, they would show the activity on it. Once that was done, I went back to my normal life and things were pretty good. My pediatric neuro who I last saw at the age of 18, said Ive had this my whole life. I may outgrow it, or may have it the rest of my life. Ive just come to terms with it and pray each day that things go good and maybe someday I will get to outgrow these seizures. Maybe i wont. All I know is that I have to stick up for what I believe in, even if its to a doctor!

 

[Nakamova]

I think you should hold off on the vEEG until you see the new neuro. You might as well see how receptive he is to the idea that:

1. A negative EEG doesn't necessarily rule out an epilepsy diagnosis.
2. A positive response to epilepsy meds is highly suggestive of an epilepsy diagnosis.

If he believes the EEG is the be-all and end-all when it comes to diagnosis, and if your vEEG comes up negative, then you will have wasted your time. (I do hope he is receptive and open-minded, but you won't know until you meet with him).

 

[thornton8000]

Thanks Nakamova they wanted to do it all in one shot without drug withdrawl so I was thinking waste of time so I want to try and get in and see the doc before setting up the VEEG and talk to him/her and feel them out before setting up the 3 hour VEEG to see how they come across.

Thanks again!
Mike