How many of you have negative results for everything?

[Jvere]

I want to hear from some of you who got negatives for all tests -- where did you go from there? Is it even worth trying to find the cause? Do we just accept what is and resolve to taking meds for the rest of our lives?

All my scans and tests were normal, which is good, but now what?

[Potter Freak]

I too have negitive tests for everything they say I have no seizure activity in my brain but I am on 800mg of Carbamazepine a day its a little frustrating sometimes

[Loopy Lou]

It can be difficult because MRI's only really detect any visible problems such as scars, lesions, tumours etc on the brain, and eeg's are like a snapshot. You can only see what happened during the eeg and not before or after, so you'd need to be having some seizure activity during the eeg for it to be picked up.

Edit - i think i heard someone say also, that in certain parts of the brain it can be hard to pick up on an eeg. There's some here who have never had a positive test, but they definately have Epilepsy.

[JRuner]

I had negative MRI, CAT Scan and 2 and a half day video EEG and still have seizure activity which increase then is greatly reduced once I had 2 miligrams of Klonopin a day, about (80 percent less activity).

Still wiating to see the Epilepstologis too.

John

[Endless]

A 5-day video EEG is more reliable. But still may not pick up the seizure if it's deep in the brain, and may not pick up abnormal waves inbetween if they are in a very small part of the brain, or very deep, or if the seizures are relatively new and haven't permanently changed the brain yet.

A PET scan is even more reliable, with a 0-15% false positive or negative rate, depending on which study you read. It shows glucose uptake in the brain. Lower glucose use in certain areas equals seizure area.

[Jvere]

A PET scan is even more reliable, with a 0-15% false positive or negative rate, depending on which study you read. It shows glucose uptake in the brain. Lower glucose use in certain areas equals seizure area.

Interesting. I didn't know that.

Thanks to everyone for the responses. I'm trying to remember that I am better off than I was 6 months ago, but I'm still frustrated because i don't have a clear picture of where I'll be in another 6 months.

Patience - Anyone know where I can get some?

[Jvere]

...greatly reduced once I had 2 miligrams of Klonopin a day, about (80 percent less activity).

John

I have been reading that a lot of you get good results with Klonopin. Wonder if I can ditch the Lyrica for Klonopin and keep the Lamictal.

Another question: do those of you taking Lamictal do periodic liver enzyme tests?

[horsehead]

All my tests were negative, mri, 3 day video EEG, regular eeg. The neuros took me off all my meds when the video EEG came up negative. The meds did help me. if you find out what to do next let me know. Right now I am videoing my spells, I have them in my sleep mostly, and I have a diary as well.

[JRuner]

Docs can be darn irritating, my daughters doc let her go for months having drop seizures and night time tonic clonic the after I "whined" enough a new doc finally put her on trileptal as a "trial" and oh shocker 99% less seizures! I wonder what changed? No more tire angry little girl in th morning that changed. Just because we are not docs we are not stupid, sometimes they just want us to act that way!

Sorry but docs really peeve me sometimes!

[Nakamova]

John -- No need for periodic enzyme tests with Lamictal, unless you have existing liver issues.

[Jvere]

That was my question about the enzyme tests. Thanks for your reply. I just thought I'd read that Lamictal was hard on the liver. I spent my first 10 or so years as an adult not being very nice to my organs and now I'm trying to make up for it.

@Horsehead: I'll let you know. I go back Tuesday.

[RobinN]

You can always work on nutritional changes to improve overall health and see if it changes the number of seizures that you have. I think it is very much worth trying to find a cause. It has changed my daughters life to leave no stone unturned. She is med free, and improving over time, just from making dietary changes.

[JRuner]

RobinN,

Have there been good results with diets in stroke victims, almost all of my daughter's learning and health issues including seizures are from stroke before and or at birth?

Thanks

[Jvere]

I was looking at the Modified Atkins last night. I have always felt better on that sort of diet (doesn't everyone, really?) but I am a single mom now of three kids and I have an extremely limited budget. I have been trying for months to go back on it but let's face it, when you have only got $40 to feed a family of four for a week.... a bag of flour, rice and beans just goes a hell of a lot farther then meat.