Epilepsy Foundation

Has anyone done a several day or week long VEEG in the hospital at the request of the dr? What were the results?

I just started seeing a new dr yesterday after going thru 7 meds that haven't worked with a neurologist who's specialty is migraines.  (Long story - I just wanted a pill that would "fix" my seizures so I could get on with my life and stay in denial, and he seemed to be the perfect dr to provide that service for me. I still see him for migraines, which he was able to help me with right away.)  My new dr is in an epilepsy center and has highly recommended that I stay for a week in the hospital for a VEEG so they can figure out where my seizures are originating in my brain.  The EEG I took yesterday came out normal.  I said I would think about it because I don't know a whole lot about it.  I am looking to hear from people who have done this or know someone who has.  What did it do for you and/or your treatment? Are you glad you did it? Has anything changed for you?  Thank you!

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After failing 11 drugs in 9 year period I had a VEEG. I was in the hospital for eight days as they tapered off my meds. The VEEG, combined with the MRI  showed my docs that I was the "perfect" candidate for surgery. I had brain surgery 4 years ago and I've been seizure free since! Definitely recommend having a VEEG.

So you've had seizures in addition to migraines?

ouchie.

A VEEG could be in order. I've had 3. The third one yielded results---I needed stronger meds or a higher dosage.I was in the hopital the first time for 8 days, seond one was 6 days and after the 3rd VEEG & going off ALL my meds.,  my epi. doc wanted me to stay longer as I had four tonic clonics in less than six days and I had been thru enough so I went home....and couldn't think straight or walk without hitting walls for at least 2 weeks. Pretty much all of my meds were increased after that last VEEG.

I've heard of some people staying as long as a month during a VEEG, awaiting for something to 'happen.' For some folks, it happens in just a few days and they go straighter off to surgery and have had much success. Some, not so much. There are lots of threads on this site re; the pros and cons of surgery and what to expect during a VEEG. Do a search and you'll find lots of info!!! :)It's up to you, though!


best wishes, hope you get some answers!

 

I had a six-day VEEG and it was because after 40 years of somewhat control of seizures and an almost fatal accident, I wanted better control of my seizures even if it meant surgery.  The VEEG pointed out my seizures were local and coming from my left temporal lobe so I knew I was a candidate for surgery.

 

The agenda included taking me off my meds, riding a stationary bike, hyperventilating and sleep deprivation.  I had only one seizure the first five days but day six I had three of the worst I ever had.  It can be very boring if you don't bring something to do with you.

 

They can do a lot more now than they could when I first started having seizures so feel fortunate you can have it done.  Good luck!

 

Ed

 

 

Thank you for sharing. It sounds like you had a similar experience to what I'm having before you had the VEEG.  I'm glad to hear you had a good experience with it.  Hearing your experience helps. :)

rosepig said:
After failing 11 drugs in 9 year period I had a VEEG. I was in the hospital for eight days as they tapered off my meds. The VEEG, combined with the MRI  showed my docs that I was the "perfect" candidate for surgery. I had brain surgery 4 years ago and I've been seizure free since! Definitely recommend having a VEEG.
Wow! You've done this 3 times? I'm having a problem just thinking about doing it once for 7 days.  Your story does help me to get over this crazy "hump" I'm having about it.  I get anxiety attacks when I think about having to be away from my family and my business for that long.  You're right, though.  There is a ton of info out there and I keep doing my research.  Thank you so much for sharing. :)

Tuckermom said:

So you've had seizures in addition to migraines?

ouchie.

A VEEG could be in order. I've had 3. The third one yielded results---I needed stronger meds or a higher dosage.I was in the hopital the first time for 8 days, seond one was 6 days and after the 3rd VEEG & going off ALL my meds.,  my epi. doc wanted me to stay longer as I had four tonic clonics in less than six days and I had been thru enough so I went home....and couldn't think straight or walk without hitting walls for at least 2 weeks. Pretty much all of my meds were increased after that last VEEG.

I've heard of some people staying as long as a month during a VEEG, awaiting for something to 'happen.' For some folks, it happens in just a few days and they go straighter off to surgery and have had much success. Some, not so much. There are lots of threads on this site re; the pros and cons of surgery and what to expect during a VEEG. Do a search and you'll find lots of info!!! :)It's up to you, though!


best wishes, hope you get some answers!

 

Thanks, Ed. The thing you said that makes a big difference for me is that they can do a lot more now than they could when you first started having seizures.  There are so many stories out on the internet that describe different experiences with the VEEG. I'm really looking for the positive, current stories like yours. (Because my dr is pushing for it and so is my hubby!) Your advice on what to bring to keep myself busy is the same advice I keep hearing. That helps, too. :)

ejl1558 said:

I had a six-day VEEG and it was because after 40 years of somewhat control of seizures and an almost fatal accident, I wanted better control of my seizures even if it meant surgery.  The VEEG pointed out my seizures were local and coming from my left temporal lobe so I knew I was a candidate for surgery.

 

The agenda included taking me off my meds, riding a stationary bike, hyperventilating and sleep deprivation.  I had only one seizure the first five days but day six I had three of the worst I ever had.  It can be very boring if you don't bring something to do with you.

 

They can do a lot more now than they could when I first started having seizures so feel fortunate you can have it done.  Good luck!

 

Ed

 

 

Thank you so much, Carli. Your words are comforting: There's nothing scary about having an EEG. The worst part is the boredom.  You are right - I've had 2 EEG's and they were boring.  The problem I'm having is taking a week out of my life to have to deal with this - honestly, I'm still in denial about having epilepsy.  Nobody wants this, especially those of us who have it. The question I should be asking is what can I learn from it?  That's where I'm trying to get. 

carli ratliff said:
I had a 24/7 EEG for a week twice. Everytime I had a seizure me or the person with me pushed a button. My neurologist found abnormal things in the left temporal lobe everytime I had a seizure. There's nothing scary about having an EEG. The worst part is the boredom. If someone is going to be there with you bring games. Coloring book, cross-stich... Anything to fill up the boredom. A computer can interfere with the EEG when you put your finger on it, so that's not such a good idea. And of course button up shirts so you don't have to wear a hospital gown.
I sometimes wonder why those with Epilepsy have not had a VEEG at the beginning.  I have had many VEEG's.  The first two were successful in finding where the seizures are coming from in the brain.  The short, one hour EEG's to me are a waste of time.  The chance of having a seizure during that time is not great.  Now, after having the brain surgery, an EEG will show a problem in a short EEG, but that is only because of the surgery.  I would say the long term VEEG is best and hope that the seizures are coming from an area of the brain that an outside wire on the brain can detect where the seizures are coming from inside.  What type of seizures are they?  I ask because I wonder if having the TL surgery is a good thought.  For some who have the surgery, they come out of the surgery with no more seizures and no problem left behind.  Others, like myself wonder if it was worth it.  Most of the time I say it was worth it.  What was left behind having mine is small, no real bother seizures, but lots of problems with memory and cognitive ability gone.  It all depends on what part of the brain needs to be removed.  Good luck deciding what is best. 
Thanks so much for sharing. Your experience and your confidence in the VEEG is encouraging. My seizures are simple partial and complex partial so I'm wondering if they will even show up on the VEEG.

The Epilepsy Resource Center thanks everyone for sharing with the community and we look forward to hearing from you again.

 

Mary Ann Thornton

The Epilepsy Foundation

The Epilepsy Resource Center

After my recent episodes of seizures my neuroligist had me do a veeg which had been scheduled for a week but was cut short since they had all the data they needed. What they actually did was force my complex partials to occur by stopping my medication the week prior to me coming into the hospital as well as sleep depriving me during the week in order to cause the seizure. I waqs lucky to have the episodes occur so that they could monitor the activity and find out through the MRI and Video what it is I was telling them my seizures look like and where my seizures were occuring from. Now the doctors have a better idea where they are occuring from and have and idea as to whether I am a good candidiate for surgery and the chances of success. I was told however I was lucky that I did have a seizure during my first hospital veeg stay. There are times where people had to have multiple visits before they had any seizure activity recorded.

I have had one and the doctor said nothing showed up but yet with what he had got on the video and what he had seen when we were talking about what was showing up he said that mine might be deeper then the normal eeg could find. He said that after finding out from my husband that I had already tried almost all of the psych. meds that are out there. If ya have a good doctor even if nothing shows up they should do more testing for not all can be found with just the scople probes as my epilepsy doctor said. Sometimes they have to look deeper, but until they do the veeg first on ya they can't order anything else. So good luck. Talk things to make it not so boring like books ya like to read or games or even movies. Again good luck.

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