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Experience with VEEG and NO seizure activity??

I am currently hooked up for VEEG and have now been here for 48 hours. They have stopped one of my meds and decreased another, but still no seizure to record!! It's freaking me out that I'm going through all of this and still may not get any closer to answers!

My abscence seizures started flaring up again this summer - I've been off work due to the seizures since eraly July and traveled 800 miles to Mayo to get some answers. But evidently now that I am sitting around, no seizures.

What will they do if they don't get a reading? Anyone have experience with this??

 Thanks.

Comments

Re: Experience with VEEG and NO seizure activity??

Totally off the topic – isn’t great that hospitals have wifi?! During my VEEG I was IMing my coworkers, bidding on eBay…lots of stuff to ward off the boredom.

 

And I know your frustration.  I only had a few minor daytime episodes during my VEEG, and they turned out to be paroxysmal dystonia. They didn’t catch any of my nighttime stuff, which is nocturnal paroxysmal dystonia, a form of frontal lobe epilepsy.

 

My problem was in the VEEG room it was dark and I didn’t have any triggers for my daytime episodes– I’m kinda photosensitive -  neon lights and compact fluorescent lights especially. AND I had a non-ep roommate who had docs in and out the whole night- I couldn’t get any sleep to possibly show them my nocturnal stuff. Beyond that, I’ve figured out from my sz diary…it was an off week. I’m female, so my szs get worse every other week and my week in the VEEG was not it.

 

What they ended up doing with me was giving me Tegretol to treat the video-documented paroxysmal dystonia. And Tegretol also is great for nocturnal frontal lobe epilepsy. So, in a sense, the docs extrapolated the treatment.

 

Do you have any triggers that you know of? Can you bring about the triggers?

 

Also, as a note of encouragement – I was to be there in the VEEG a couple of days. I had a couple of little thingies, but I wasn’t facing the camera or the thingies were wimpy, and they were undecided .The docs ended up holding be for about four days. On the fourth day, the EEG techie had been notified to come and unhook me. I was waiting for her and suddenly BAM I had a good event to record on the video. (Sure, it wasn’t the e, but it sure helped the docs name what my common daytime episodes were…and started with my treatment.)

 

 So the docs might decide to hold you longer. And who knows – you might “perform” for the VEEG apparatus just when you don’t expect it.

 

Usually you don’t say this to an ep, except in VEEG – I hope you seize real good!

 

Steph

Re: Experience with VEEG and NO seizure activity??

OH MY...I was going through this myself. I just had one at the beggining of the month, they only held me 24 hours. I have not gotten to talk to my nuero- he just left me a message...

I did not seize during the VEEG. I was sooo mad since I had siezed badly three days prior to them for two days straight. I had taken some new water pills my nuero gave me over the weekend to give me some sort of rest (I went in on a monday night) just to be able to go to work- but I didn't think it would affect me too long and I didn't take all of it. I doubted they would be so strong as to stop all activity for days. They did not downscale my meds since I am uncontrolled. I have complex partials associated with my period.

Apparently the test came out normal from his message.

I am so upset. That was my only chance at an answer, a diagnosis. And I have to still pay for it.

Part of me wants to pretend that the test was it. It was normal because everything is. If I believe it it can be. My parents always wanted it to be psychogenic. I always would get angry at the idea, my old nuero strongly doubted it. But going along with the idea starts to sound nice. At least still the next sz. I guess I don't have an answer eitheir.

Pass me an oar, I'll row the boat on this side.

Re: Experience with VEEG and NO seizure activity??

The same happened to me...ended up spending a week in the hospital.  I told them to give me  the same meds that precipitated my last seizure and bingo!  In my case, it was a combination of demerol and phenergan (which I had been given during my miscarriage), so they gave it to me during the veeg intravenously. It took just two hours and I had a grand mal seizure. 

My other seizures were never triggered by meds, but I wanted to get out of the hospital already and this was a last resort.  At least they got the information they were looking for.  I do know that antihistamines do trigger seizures, would they be willing to give you that?  Or perhaps you can drink some caffeine or stay up during the night, so you're sleep-deprived.  That may trigger you as well.  Good luck and keep us all posted.

Re: Experience with VEEG and NO seizure activity??

In Sept 2007 I was admitted to the Epilepsy Monitoring Unit for VEEG.  I was told the typical stay was 3-5 days.  I was there for 11 DAYS!!  I had minor seizure activity, but not enough for an accurate reading.  I was hoping that my hospital stay would help my epileptologist determine the exact focal point because I want to be a candidate for brain surgery!  We have been altering my medication since I was diagnosed three years ago trying to make me seizure free.  He is threatening to put me back in the EMU.  I refuse because I just finished paying off the last hospital stay and it was unsuccessful.  He told me my only other option at this point was to have a friend sleep with me to witness what is happening during my nocturnal seizures.  I have been sleeping in my friend's bed for 4 days and I want to sleep alone again!  I have been waking up with back pain, head aches and experiencing nightmares.  Possible seizure activity?  My friend is a heavy sleeper and could be sleeping through it.  Any ideas for options?  I don't want to head back to the EMU!

Re: Experience with VEEG and NO seizure activity??

my daughter has been having VEEG since she was two weeks old shes 5 and half years old now and they just now caught a seizure on the veeg three weeks ago! I feel your pain. Im so sorry!