Newbie question on EEGs

[Endless]

Hello, all.

I'm a newbie to all this and need some help.

I have a diagnosis of probable temporal lobe epilepsy. Two sleep deprived EEGs have come out negative. My doctor has me scheduled for a week-long inpatient (Hospital) videotaped EEG, where they will take me completely off my meds and monitor for a week. This seems like a bit much - to check into the hospital for a week. Have any of you had this done? Is it usual? Isn't there another way that's less intrusive into one's life?

Can an EEG come out negative and you still have epilepsy? A week long one should be more conclusive, but can it have a false positive or a false negative? And if so, why?

Have any of you been suddenly taken off your meds? What happened? This has me really scared. I've been on Keppra for 3 weeks, and am finally starting to feel better. I'm afraid if they take me off it will take weeks to feel better when they put me on something else.

Truth be told, I feel altogether scared. Scared of epilepsy. Scared of my life being so screwed up right now. Sheesh... it will take over 3 hours each way to get to work by bus. On top of an 8-10 hour work day = 16 hour days. That's crazy. And when I get back to work, what if my seizures aren't under control, and I do or say something crazy? Really, people don't understand epilepsy, except in the classic types of cases.

I think I'll just go away and cry now. (Is this the Keppra?)

[Nakamova]

Hi Endlesssea, welcome to CWE!

Great questions, below are some answers. I'm sure others will chime in too. You're not alone in what you're experiencing.

There are portable EEG monitors, but they can be a bit of a pain, especially if they malfunction, or the sensors detach. The in-hospital stint can be boring and a nuisance, but technical glitches can get addressed right away.

Yes, there are false positives and negatives with EEGs. Many people on this site can attest to definitely having epilepsy, but without ever having anything show up on an EEG.

Ordinarily, meds should never be stopped suddenly because of the risk of a seizure. The risk comes from not only being unmedicated, but also because tapering off too quickly can cause a seizure all by itself, almost like a withdrawal symptom. In most cases, no doctor would advise you to stop cold turkey (unless there were symptoms of a toxic allergy). In this case, they want to ensure a "seizure-provoking" scenario in the hopes of having something show up on the EEG. My EEGS were never unmedicated, but perhaps your docs think it's the only way to generate some useful EEG info. I would ask them if it's absolutely necessary that you be unmedicated. If so, a hospital would be a safer place to be than at home.

The Keppra can definitely cause moodiness, depression and "kepprage". Taking a B6 supplement can help with this side effect.

It's okay to be scared -- we've all been there. The early stages of a diagnosis can be especially confusing and anxiety-provoking. It's not a bad idea to talk to a supervisor at work if you feel like your seizures aren't under control. Be matter of fact and clear. Provide contact info, and instructions on what they should do if a seizure occurs. There are a lot of myths and misconceptions about epilepsy, so you may have do a little educating.

Best,
Nakamova

[stilldancing_98]

Welcome Endlesssea! Things will be fine. Sounds to me like you have a good Dr. That he or she wants to take care of this now. Not wait. I have had that test before. Just relax.It tells him what kind of meds to give you.It's not dangerous either. And I have had epilepsy for 35 years since I was ten. I remember them comming into my high school driving class and telling me I could not drive. I promise you. It will be ok.Kind of a pain in the you know what. But what isn't?

[Endless]

Thanks to everyone who has sent me emails and posted replies. You've helped me so much.

This forum is a lifesaver. The doctors, including neurologists, told me I was nuts for months, until a seizure specialist nailed down the diagnosis. Then things started to make perfect sense - it all fit.

All the official sites say almost nothing about some of the symptoms I've found most worrisome - saying and doing weird stuff, memory, and physical symptoms. So I still was wondering if I'm nuts (I say as I found in the morning my computer on the floor, stomped on and screen broken, with only a distant and vague memory of the event - like it really didn't happen... sort of like an echo of something that used to be there.)

Reading everyone's posts have made me feel normal again. At least as normal as this gets. I'm in extremely fine company.

I had a total meltdown yesterday. My task today is to call my doctor's office and apologize the the nurse, who I'm afraid was on the other end of my crying jag. Since they have an office full of patients on Keppra, I think she'll understand.

[skillefer]

I've only had one abnormal EEG in over 30 yrs....so yes, you can have E and have normal EEG's.

[dumbspouse]

My wife's last EEG read that the spot on her brain that is causing the seizures is shrinking. Does this make sense to anyone???

[stilldancing_98]

Are you sure that was not a special kind of mri? or scan?That would make sense though.In an eeg a spot where it was comming from would show.Maybe the spot itself is not shrinking. Just the area itself where its comming from is not comming from there as often. Does that make any sense to you?That means there is just not that much activity from there anymore and an eeg would see that.Good luck. Teresa

[RobinN]

My wife's last EEG read that the spot on her brain that is causing the seizures is shrinking. Does this make sense to anyone???

I do not believe that an EEG can show the size of any part of the brain. It is true that an MRI can, because it takes picture of the tissue. I have heard that there can be shrinkage, due to many different reasons. I don't know if it is directly connected to seizures alone. I am sure there are viruses, medications, excessive stress, nutritional deficiency, unstable brain function, + others that could possibly contribute to muscle loss. In my opinion.

[Meetz1064]

as of this very moment, hooked up to an ambulatory EEG.........an Ambulatory EEG. I woke up to get some water, and checked in here. I do have a bandana tied round my head to keep my leads tight on my head, I don't want them coming off and to do this thing over again--this ambulatory EEG is 4 days long. I wear it around my waist, and have to change batteries on the second day, which takes 10 seconds. The other ends to the leads are firmly in the machine, and won't come out til the tech takes them out........I'm NOT touching them....there's 20 of them.

OK, so an inhospital week long video EEG can be annoying. True. I also have VEEGs done on a regular basis, but at my doc's office where he has several suites built in to do it. The idea is that by taking you off the meds that they can get a TRUE picture of what's going on in your brain....especially if you're a newer E patient. Royal pain in the arse, I agree. For me, they don't take me off--I've been an E patient for 45 years, and I just have more show up.

Like Nakamova pointed out, EEGs doint always show things when they're done. EEGs are simply a snapshot in time of what's going on in your brain at that time. As a matter of fact, my EEGs were perfectly clean for more than 40 years--until about 4 years ago. Then they started changing. Oh well.

Being scared is normal. Don't think it's not. Especially if you're new to E. I've learned to accept it, and know that there are risks with it. I know how to deal with them, for me, and that's all that I can do. Learning how to do that for yourself is what is important right now. Learn everything you can about E--KNOWLEDGE IS POWER about E. We'll help you--that's what we're here for.

Keppra, is a pain in the arse for moodiness. I personally cannot take that drug---I had some.......WEIRD reactions on it. Nak's suggestion about B6 is perfect, B vitamins are great for brain health, and as Robin can help you find out, many of us E patients are lacking in several vitamins and minerals. Nutrition is also a biggie for us.

No matter what--DON'T let E get you down. I personally look at it as a challenge. And I go from there.

Take care.

Meetz

[dumbspouse]

I do not believe that an EEG can show the size of any part of the brain. It is true that an MRI can, because it takes picture of the tissue. I have heard that there can be shrinkage, due to many different reasons. I don't know if it is directly connected to seizures alone. I am sure there are viruses, medications, excessive stress, nutritional deficiency, unstable brain function, + others that could possibly contribute to muscle loss. In my opinion.

With the new doc she's getting, I'm going to push for an MRI. For both of our sanities. The last one she's had was when she was 4 or 5.