Benefits of a longer EEG?

[darcness]

I wasn't really sure where to put this, but I figured here would be a start, sorry if it's in the wrong section.

I'm just curious what the benefit to a longer EEG is? My wife did the normal EEG test, which as you all know is pretty short and just a snapshot of that particular time frame. As such, the test came back normal. So did her MRI and all the blood work.

Can some one explain to me what the benefit of a longer EEG is? I mean even if it shows abnormal, what does that mean? Can you formulate a better treatment plan or long term prognosis with it? Unsure...

I ask this because she's had full control for 4 months now on Depakote and seems to be doing much better now. Would the long term EEG be beneficial to her still? Since we don't have a whole lot of money and my insurance isn't all that great, I'm not certain what we should do, or if it's worth it to do a longer EEG.

[epileric]

Don't worry, you put the message in a great place. When in doubt always go to the kitchen, that is where everyone ends up talking at the parties anyway.

What an EEG does is it shows abnormal firing (excessive or deficient) in the brain & where in the brain it occurs.

Abnormal firing isn't necessarily constant & can be quite random so the longer the EEG the more likely misfiring is going to be recorded as well as if there is an apparent pattern to it like every so many hours or at a specific time of day.

[darcness]

Thanks Eric!

I do understand that the purpose of a longer EEG is to actually get some seizure activity recorded, but what usefulness does this recorded activity have if one is already on meds and has acheived full control?

That's what I'm curious about. What does the abnormal EEG actually show, and how is that useful in terms of treatment? Or is just a useful tool for diagnoses?

[epileric]

As far as I know it's just a useful diagnostic tool like you said. The problem is that occasionally people with seizures don't show anything abnormal on them, even during a seizure.

[Nakamova]

Sometimes the brainwaves that show up on the EEG can be linked to a particular kind of seizure, and a particular med may be more effective for treating that kind of seizure. You should ask the doctors what they hope to learn.

But I agree generally -- Why do a test when you already have seizure control and aren't considering going off meds? I've rejected getting an EEG for similar reasons (its potential inaccuracy, its irrelevance to my treatment status, and its financial cost).

Best,
Nakamova

[Meetz1064]

them, too...when I had full control. But now that I have the 2 new forms, and they still aren't quite behaving themselves, particularly the electrographic type, I do agree to have the EEGs when the neurologist wants to. Cuz let me tell ya, something IS going on up there.......

[RobinN]

The way it was explained to me is... it is similar to the security camera at 7-11.
If the camera is on from 8-9 but someone comes and robs the store at 10, then you are out of luck to see it on the camera. If the camera is on for 24 hrs, and you get a hit then voila, you are in luck to see the rotten one that did it. If though, the camera is on from Tues to Wednesday, and you get hit on Friday, then once again you are out of luck.

I think the theory is, once on meds they might want to do another EEG after about 2 yrs, and if there is no activity, they then can attempt to lower the meds. Of course the body typically rejects that idea after being on meds for two years, and you have a reactive seizure. So the only outcome is to up the medication and occasionally change the prescription. That seems to be common practice. The ever revolveing med choices, and then after trying the top 11 meds, you possibly have been medicated for 12 yrs, and are too scared to try alternatives. That's my opinion though from the stories that I read.

Meetz - something is causing it, that is for sure. Not necessarily beginning and ending in the brain. You have celiac and this is known to cause brain malfunctions. Take care of that and you could very well see the misbehaviour die down.

[LuvMyTwins]

I was put through a 4 day EEG (I was controlled) and didn't enjoy it at all. First and foremost, no one really gave me a reason. Secondly, nothing showed up. I find that the 72 hour ambulatory EEG is much better as there are different circumstances that the brain reacts to as opposed to lying in a bed doing nothing.

Meetz--I agree with Robin here. I have food allergies as well and a lot of "stuff" stopped when I eliminated it.

Robin - How is Rebecca? Any breakouts?---LMT

[darcness]

Yea, I understand the point of what it does, but guess I just don't see a reason to push Tera to do it right now. She is already terrified enough of tests as it is, so pushing for a 72 hour EEG would likely be more difficult then pulling teeth... with a spoon.

What exactly is an ambulatory EEG? Also, is there any longer term EEG's they can do at home? I'm curious because if it was something she could do at home, she'd be much more likely to agree.

[LuvMyTwins]

Ambulatory is at home (sorry, I should have made that clear). I can't stand the one's in the hospital, and truthfully don't see the point if there's stability. Yet, the ambulatory EEG seemed better to me as it would test my brain in different circumstances. As I agree with RobinN's video, I do believe we can re-train the brain. I was using it as a tool for me as, with stability, no doctor is changing my meds :o)---OK--Sorry--I'm on this empowerment trip.---LMT

[darcness]

Thanks for the info LMT. That sounds great. If it comes to it and she needs/wants a longer EEG that will be the way to do it. What do they do? Just hook everything up and then send you on your way? If so, that sounds simple enough to me. My wife would likely go for that if she needs to.

[LuvMyTwins]

That's exactly it. Yet, have a hat (or a wig) on the way out. The whole "Mummy" (as my kids call it) thing freaks people out :o).

[RobinN]

Robin - How is Rebecca? Any breakouts?---LMT

Breakouts? meaning seizures? NONE
Breakouts on the face... some due to increase in yeast I believe.
Just finished our first round of chelation. It went well. Only at 25 mg to start, so I might bump it up to 50 next weekend and see if she can tolerate that.
Meaning 50 mg every three hours.

[LuvMyTwins]

Fabulous news! What is chelaton? -LMT

[epileric]

Fabulous news! What is chelaton? -LMT

chelation (kē·lāˑ·shn),
n 1. medical treatment in which heavy metals are flushed from the bloodstream by means of a chelator that binds metal ions; used in cases of mercury or lead poisoning.
2. the process of ring formation by forming one or more hydrogen bonds.

It can be used to flush other metals than mercury or lead though

[LuvMyTwins]

Thank you! Would that be an issue for those taking meds---all that flushing?

[Crystal11]

I had a 48hr EEG and found that I was having spike and waves as well as seizures on it. I would rather have that than one that is several days long. I had the same test but for my heart called a Holter Monitor and if I didn't have that done for two days, they would of had a hard time finding the tachycardia but like seizures, it's not constantly happening every second of the day.
Usually the shorter in-office EEGs and EKGs I recieved were normal but the longer ambulatory EEG and Holter Monitor showed events and signs of seizures and tachycardia and skipping.
I am thankful for those tests even though they were not exactly fun.
Both these tests I had to ware to school! NOT cool.. but I knew it was important to do.
Take care everyone.