Thoughts on VEEG

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Hello all.

I'm scheduled for a 5-day VEEG in a few weeks. For the folks who have had this procedure done, I would like your opinion. Was this procedure worth it? Did you get any results, or is the cause of your seizures still unkown?

I'm not sure if anyone can relate...I had seizures in my teen years 'til I was about 21. Now, 15 years later, the seizures are back. While I was pregnant last year, I had an aura. Then four months after giving birth, I had a tonic-clonic seizure. I thought it was due to the hormonal change, but my doctor ruled that out.

I am taking vimpat, but weaning out of that to lamictal. However, I am still having seizures about once a month, so my doctor recommended I have the VEEG done. I am a little skeptical about the procedure, that's why I am asking for your opinion or recommendation.

Thanks!
Diana
 
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I'm curious, too. They're wanting to do a VEEG on me, too, but I'm reluctant because I already had a regular EEG and a 24-hour ambulatory EEG, and neither confirmed anything because I didn't have any episodes during either of them.

And my seizures occur anywhere from 9 days to 37 days apart, so what good would a 5 day VEEG be on somebody like me who only seizures once or twice a month, if that?

I've noticed, too, that my worst seizures seem to occur on days when I wake up already confused with memory problems, as opposed to seizures that occur in the middle of the day without any warning. And after one of these severe seizure clusters, it usually takes a month or longer before I seizure again. Whereas when I have a less severe seizure, I might seizure again within a week or two already.
 

mel239

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Just came from my epi and they want to do a long eeg and mri then another veeg since I didnt seize.I was there for an hour so suffice to say sharp waves were on my veeg and my first eeg but no actual seizure-dont know why the determination to see a seizure-guess they want to offer slice and dice as a viable option instead of meds
 
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So they're pushing you to 'prove' your seizures, too? And you think it's so that they can offer surgery? That's scary. I just want my meds so that I might get my license back here eventually.
 

Endless

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Hi, Diana,

Welcome to the forum!

Your doctor is trying to diagnose your seizures. That's why he wants the VEEG - just in case you do have a seizure. It's not unusual for seizures not to show on an EEG. One reason could be because one isn't happening and there are no permanant changes in your brain yet that would show inbetween seizures. The other reason could be because they are partial seizures (only affect part of the brain) and are happening too deep in your brain for the electrodes to pick up, especially in frontal lobe seizures.

I only had one event during my 5-day eeg, and they didn't pick anything up. But at least it ruled out some other stuff.

Are you insured? If so, what would you have to lose? Sick leave? Boredom??? If you have nothing to lose, you may want to go for it. They just may pick something up.
 

mel239

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Veeg financially set me back-boyfriend missed a week of work which was a 1000 bucks I just want my weird crap to be over with but Im not looking for any surgery-clevclinic seems to be big on that
 
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What do you mean by a long EEG? An ambulatory EEG? And then another video EEG?

With me I can often predict when I'm going to have a seizure - if I wake up confused with memory problems, it's going to be a 'seizure day'. Thing is I don't know this until the morning I wake up confused, and EEGs must be scheduled in advance...like a month in advance.

Why can't my neuro just write me a slip for an EEG, and next time I wake up confused I can find a ride to the ER or EEG center? It would save the healthcare system a lot of expense, rather than having me sit in a hospital for 1 or 2 weeks stressed out, having to find someone to come into my home and care for my cats for that period of time (when I have OCD and serious 'contamination' fears), and I may not even have answers after all that? It's crazy.
 

mel239

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I had VEEG and sleep deprived eeg both showing sharp waves on left temporal lobe-I had mri with slight hippocampal scarring-cause undetermined and they basically blew that off as it came from a different hospital and wasnt what they called"epilepsy protocal" Now they are doing a 3 hour eeg and mri at the main campus of clevclinic-they have really been obsessed with that main campus stuff-clevclinic has numerous local satellite offices,but those arent acceptable for some reason
 

momof3boys

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I just had a VEEG done March 7th. I was in the hospital March 7th through March 11th. I was taken off all my medications abruptly, no weaning of anything. Took me 40 hours after my last medication dose to start having seizures. They said they could see the spikes of epilepsy on the VEEG, but the seizures I was having the dr said were non epileptic. He sent me to a psych dr, which she then ruled out the stress seizures and claims in her opinion, they sounded more like simple partial seizures that didnt pick up on the VEEG due to being too deep within the brain.

A week after i was sent home from doing the VEEG, by dr must have got recieved the psych's notes and he then tells me he is going to put me on Vimpat. His nurse spoke with me and they believe the psych is right about the seizures I had being simple partial seizures.

So, the days I spent in the hospital doing the VEEG was ok, but the last two days seemed to be the longest and most difficult. I hated the fact that I was pretty much "stuck" in the bed 24/7, and couldnt get up to use the restroom til a nurse was there with me. I wish my seizures would have shown up on the VEEG, but my dr says he wishes he would have left me in the hospital alittle longer to see if anything bigger showed up.
 
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Actually, my first EEG was sleep-deprived, I think. Is that when you go to bed at like midnight and wake up at 4am? I even forget what I did.

I knew it wasn't going to show anything though anyway, sleep-deprived or not, because since all this seizure stuff started, I don't seem to need 8 hours of sleep. I get by easily on 3 or 4 hours of sleep or less, feeling moody, but not especially tired. Trouble falling asleep and staying asleep has been an ongoing symptom with me though.

I feel bad for you though...they don't seem to be pushing for me to get my tests done at any place in particular, but they do seem to be pushing for me to prove the unprovable.
 
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That's another fear of mine...that if I do agree to a video EEG they are just going to have more ammunition against me to call my seizures non-epileptic or psychogenic. And sorry, but after crashing my car during one, and then dropping the phone in another and burning holes in my fingers with a cigarette I'd been holding, nobody is going to tell me these aren't real seizures.
 

mel239

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and now I just got done reading that sharp wave in the left temporal lobe can occur with acute psychosis-so my so-called proof of seizures is just proof that Im psychotic-wow this has been a rough 2 years-I dont know what i am or where Im going now
 

Cint

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and now I just got done reading that sharp wave in the left temporal lobe can occur with acute psychosis-so my so-called proof of seizures is just proof that Im psychotic-wow this has been a rough 2 years-I dont know what i am or where Im going now
No, you are not psychotic. It's jsut part of the strange and complex seizure disorder, especially TLE.

Here is some interesting info from http://www.neuroskills.com/tbi/btemporl.shtml
Temporal Lobe Function

Kolb & Wishaw (1990) have identified eight principle symptoms of temporal lobe damage: 1) disturbance of auditory sensation and perception, 2) disturbance of selective attention of auditory and visual input, 3) disorders of visual perception, 4) impaired organization and categorization of verbal material, 5) disturbance of language comprehension, 6) impaired long-term memory, 7) altered personality and affective behavior...............

Seizures of the temporal lobe can have dramatic effects on an individual's personality. Temporal lobe epilepsy can cause perseverative speech, paranoia and aggressive rages (Blumer and Benson, 1975). Severe damage to the temporal lobes can also alter sexual behavior (e.g. increase in activity) (Blumer and Walker, 1975).
BTW, Dr. Blumer that is mentioned in this article was a neuropsychiatrist who specialized in seizure disorders and the psycho effects of TLE. He used to be one of my drs.
 
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Hi, Diana,

Welcome to the forum!

Your doctor is trying to diagnose your seizures. That's why he wants the VEEG - just in case you do have a seizure. It's not unusual for seizures not to show on an EEG. One reason could be because one isn't happening and there are no permanant changes in your brain yet that would show inbetween seizures. The other reason could be because they are partial seizures (only affect part of the brain) and are happening too deep in your brain for the electrodes to pick up, especially in frontal lobe seizures.

I only had one event during my 5-day eeg, and they didn't pick anything up. But at least it ruled out some other stuff.

Are you insured? If so, what would you have to lose? Sick leave? Boredom??? If you have nothing to lose, you may want to go for it. They just may pick something up.
Hi Endless,

I'm insured, but I still have to come up with 3K which is not pocket change for me. I don't mind the hospital stay, or boredom that I'll be facing. I just wish I could get a definite answer of what is causing the seizures. I've heard many people go thru the VEEG and got no results because they didn't get any seizures. In my case, if surgery can take care of the problem, I'd go for it! My biggest fear is hurting my son if I happen to get a seizure when he is with me.
 
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Hi mom of 3,

So what's the next step? Are they just keeping you on Vimpat for now? Have they offered other procedures that might be done? I'm not taking any medications 48 hours prior to checking in. That way I can be more certain to get a seizure while I'm there. My doctor said if he can figure out what part of the brain my seizures start, he'll have a better idea and possibly have other solutions.
 

momof3boys

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Hi mom of 3,

So what's the next step? Are they just keeping you on Vimpat for now? Have they offered other procedures that might be done? I'm not taking any medications 48 hours prior to checking in. That way I can be more certain to get a seizure while I'm there. My doctor said if he can figure out what part of the brain my seizures start, he'll have a better idea and possibly have other solutions.
My dr said the same thing to me before checking in. He never told me to quit taking any of my medications. He just admited me and said he was going to take me completely off all medications at that time. So, I was in the hospital for monday with no medications, no seizures, into tuesday, when my first seizure occured at 2:30pm.

Since being released and sent home, my dr first thought my seizures were stress related, and sent me to a psych dr. She ruled out the stress headaches, and I was put on Vimpat with the Keppra XR. Im on day 6 of the Vimpat. I dont see my neurologist til May 25th. So, for now, he wants me to continue to take the Vimpat and Keppra XR. My mom thinks I should try to get in alittle sooner, if I can. Im going to see how the Vimpat goes, and if I have any more problems, then I will see if I can get in sooner. Til then, my drs nurse tells me she said the seizures that I had were simple partials. So, if any other tests can be done, which is one thing I will be bringing up when I see him in May, I will be asking him that. I did get approved for Financial Assistance for the next 12 months. So, I say if there is anything else we can do to pin point the seizures, Im covered, so why not try to do it?
 

mel239

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After the first VEEG showed nothing,i have no problem with all these other tests,but losing a thousand dollars is the difference between being another house payment behind.Five dollars is a significant amount to me-i hate it but thats the way it is.
 
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