Tomorrow Morning 5 day EEG

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

sounds like we're all going to be in hospital at the same time -- so everyone needs to report back on results -- if any!!
 
Anna went to the hospital today...not the same hospital where she had previous video EEGs, and I was surprised by some of the differences: She is able to be disconnected each day to take a walk down the hall (with a nurse or family member) and to shower. They are very concerned about the possibility of blood clots so she has to wear things on her legs (like blood pressure cuffs) that alternate squeezing them, and she needs a shot in the stomach once a day. They use the sphenoidal electrodes in the cheeks which I only just heard of recently (Anna will only get those if needed). And the one that really surprised me was giving patients alcohol to bring on a seizure when other things fail. She's not 21 yet so not sure if they can give it to her, but she's definitely not in the pediatric EMU anymore!

She's had 10 absence seizures in the past week, but nothing so far today. We are not staying overnight with her this first night, she felt okay about staying alone and had a friend visiting late into the evening. But one of us will stay when they reduce her meds and sleep deprive her.
 
Sorry all, I was out yesterday and I was pretty wrecked today. They discharged me early and didn't find anything. So where I go from there, is just hoping I can stabilize asap. I hope you all find something.
 
Doesnt it kinda tick u off u spend all that time and money in the hospital and nothin.sure its frustrating keep your head up
 
Muay, that must be disappointing. Anna's had five VEEGs before this one and most of those we got nothing from. She's still not had any seizures the second day, no medication for her tonight and sleep deprivation, so we'll see if that helps.
 
Yes, Acpollard is really does hit a nerve when a good amount of money showed nothing. But I just have to see the forest for the trees and i'll figure something out.

Well I hope Anna gets her results. I'm sure she is getting sick of all of this and I bet it is hard to endure not having answers for someone you love.
I hope they can find something this time and she will be feeling 100 percent in no time.
 
So glad Anna is able to get "off the leash" to get a shower and take a walk -- that must help immensely.

MuayThaiFighter -- what a bummer they couldn't catch anything, but actually that happens more often than not.

And...when Jon had his sleep EEG (just 12 hours) -- OF COURSE he had no seizures that night (after having 2 or 3 EVERY night for previous 9 days). We have come to the conclusion that the cure for seizures is to go into hospital and get hooked up to EEG!

Actually, in our case, it wasn't so bad, because they weren't really needing to see seizures this time (have caught them on previous EEG). The point of this EEG was for several reasons -- one, the doctor wanted to take a look at his psychotic episodes immediately following a seizure. Also wanted to rule out any of the childhood encephalopathies like Lennox Gestault. And wanted to see if he's having any sub-clinical seizures.

So, the end result is, no, he doesn't have Lennox Gestault (yay!), and he doesn't have sub-clinical seizures (pretty much already knew that). He does have some abnormal spikes while sleeping in his temporal lobes (mostly on right side) -- which is consistent with the temporal lobe epilepsy that was already diagnosed.

As far as cost...well...you guys are going to hate me...but having it done at the Bumrungrad International Hospital in Bangkok only cost about $600 USD.
 
Karen, good to know they were able to find out what you needed to know without Jon having seizures. Glad he does not have Lennox Gestault.

I agree with you that going to the hospital for an EEG sure seems like a cure for seizures! Anna is going into her third night tonight with no seizures so far. 24 hours now without medication, and stayed awake until 4:30 am on the second night. Today they gave her the sphenoidal electrodes. No pain inserting them (she was numbed an hour before) and only slight discomfort while eating this evening. She has been having auras but nothing showed on the EEG, so we will see now if the sphenoidal electrodes pick them up.
 
I am glad you know whats going on with Jon, poor little guy. I hope they fade with time, and he never has to deal with any seizures related stuff in the future. Wow, 600! The full price in America is unreal. 90 percent discount is 5,000! Man, I need to move to Thailand haha.

Hopefully Anna has something come up, and im glad she didn't have bad discomfort from the sphenoidal electrodes. Best of luck and I hope you are both doing well.
 
Sorry you weren't able to get results MTF. What's next for you?
 
Going into the fourth night now and still no seizures but lots of auras. Still nothing showing in the eeg but when she saw her doctor today he said he never tells a patient auras are not epileptic, they could just be too deep for the eeg. Her auras have been lasting 15-20 minutes and he said that was atypical for auras. She had more electrodes added today, this time in back to get the occipital area.
She wasn't feeling well at all the first half of the day (stayed awake til 4:30 a second night ) and was having sudden sensations of nausea. Not sure if that could be withdrawal from her lamotrigine and vimpat, or if nausea could be another type of aura. She was scheduled for 5 days, going home Thursday, but doctor said he'd like to keep her here til she has a seizure.
 
Actually, people do travel to Thailand from around the world for high quality, inexpensive medical care. But that's more for one-time things -- say, a hip replacement or something that doesn't require ongoing appointments with a physician.

We've been using the same neurologist in Bangkok for 6 years -- in the past, we just flew in from other points in Asia, but that was when Jon was seizure free for several years.

When we were in the States, Jon racked up over $100,000 in medical bills each year. Fortunately, we have very good insurance.

Jon's doctor just moved him from the private international hospital to the medical university hospital, because he wanted to be able to work with the nutritionist there. I was very surprised that at that hospital (a government hospital), there is no fee for the physicians. Just about $2 for a "facility fee" and then pay for the meds. I guess it's a sort of socialized medicine, which we are eligible for as tax-payers in Thailand. So, if I were to consult with Jon's doctor in California (where he's licensed to practice), I'd be paying him probably around $400 a visit, and at the International Hospital, I pay him around 1500 baht (about $50), and now I pay him nothing.
 
How sad that the cost in the US is so much higher, and if you're happy with the care Jon receives in Thailand that's fantastic.

Looks like the 5-day might become an 8-day. She's decided she can miss her Friday classes because doctor would like to keep her here through the weekend til she has a seizure.
 
Well, I'm glad that her doctor is willing to keep her in there a little longer.

I've decided that the cure for seizures is to go into the hospital and get hooked up for an overnight (or longer) EEG
 
Anna got out of the hospital Friday after having a very small seizure in her sleep. That was the 6th night, and 5th night of being off medication and staying awake until 3 or 4am. Unlike the secondary generalized seizure that she had when she was off meds for an EEG four years ago, this time they said she just opened her eyes briefly, then went back to sleep. But it was enough to verify her diagnosis of epilepsy from the earlier EEG, right parietal lobe to be exact.

Feeling somewhat disappointed that they never saw a daytime seizure, she was having them almost every day before she went in, and the doctor said if she starts to have them again he wants her back in the EMU to do it all over again. Not sure I understand why they think the nocturnal seizure is different from her daytime ones, they are usually absence/staring type and very brief also. I am guessing that they might think the daytime ones are nonepileptic, and that's why they need to record one?

Anna is also disappointed that her auras did not show on the EEG. Because of that the doctor told her to ignore them when they occur from now on (unless they are followed by a seizure). She describes her auras as similar to a seizure, just less intense, and is finding them hard to ignore, especially while she was trying to catch up on homework over the weekend.
 
I agree, it seems strange that the doctor told her to ignore the auras that don't generalize. Auras are seizures too -- it's important to track them, and ideally control them. Red flag, that maybe the doctor isn't great, maybe worth finding another...
 
I would tend to agree with you Nakamova, that it seems like a red flag, except that we chose this doctor because he is the director of the epilepsy center at at a world-renowned hospital so I would hope he knows what he's talking about. I don't think he used the word ignore exactly, but rather that she should not be concerned with the auras, and to treat them like any other passing feeling she may have. He did say to her a few days earlier that he never tells a patient auras are not epileptic just because they don't show on the EEG. Perhaps we just need to have a better discussion about her auras with him. Today she said she feels like her auras were stronger, and closer to what her seizures feel like, so there is a very fine line between them and I think she should be considering them all to be seizures.
 
Interesting that she had fewer seizures when OFF her meds -- one mild one in 5 days of being off meds, when she was having them almost daily when ON meds.

I know that the meds in the benzo family (Diazapam, Clonazapam, etc.) can sometimes CAUSE seizures when the body gets too tolerant of them. But...I would imagine that going off any of the benzos would create pretty dramatic withdrawal seizures.

Does she tend to have her seizures in a cluster? For instance, Jon used to have his seizures every day for about 3 days, and then go for about 4 days without any.

Has she started back on her meds? I was wondering...it doesn't sound like the meds were helping much...perhaps she's better off with a very low dose of whatever she was taking before, or perhaps none at all, or maybe a change in meds? Maybe just a nutritional approach or biofeedback or something like that.
 
KarenB said:
Interesting that she had fewer seizures when OFF her meds -- one mild one in 5 days of being off meds, when she was having them almost daily when ON meds.
Click to expand...
We thought that was weird too, and my husband asked the doctor why can't she just stay off her meds now. I knew what the answer would be, that she needs to be seizure free for 2 and half years ON the meds before considering taking her off. And then she did have the very small seizure in her sleep that they did say was epileptic. So she is back on the same doses of lamotrigine and Vimpat. Doctor claims they should not cause her concentration problems at school, but we still think they are (lamotrigine is the one we blame). I would like to consider lowering or changing meds, and I think I am ready for some nutritional approaches too.

As far as clusters go, I haven't noticed a pattern like Jon's of a certain number of days with and without. But she does have an occasional day or two of no seizures. If there's a pattern it's more like she has the daily seizures for weeks at a time, then they stop for several months, then daily again for a number of weeks. It's been around 6 weeks of almost daily seizures each time.
 
Even though Lamotrigine has a decent track record when it comes to cognitive side effects, it can still cause them -- and I would think that kids are more vulnerable to such side effects. For your doctor to dismiss that possibility is dismaying.

The 2.5 years seizure-free is a very general rule of thumb. It's not a bad one, but it doesn't discount the possibility that your daughter might be able to go med-free sooner. This article gives pretty good information about the issues related to going off meds: http://www.epilepsy.com/epilepsy/newsletter/jun09_aeds
 
You must log in or register to reply here.
Back
Top Bottom