Now What?? please help!

[daisy.girl]

so back in Feb I had a 20-30 minute EEG that showed spikes in my left parietal lobe. I was having periods of zoning out/blank stare and rolling my thumbs together.

Recently, I have awaken about midnight, confused, thinking it was morning with my teeth tightly clenched, and having bitten the inside of my cheeks.....this happened about three times in a 2 week period.

Also, I have body jerks, like when you're cold, or right before you fall asleep, you know, when your whole body jumps, but mine have been happening at various times.

Last week, I had a 72 hour ambulatory EEG...which came back normal.

Does that mean I do not have seizures??

What does the spikes in the original EEG mean?

Will I get a diagnosis of seizures?

The doctor did start me on Topamax.. but that may be because of a long history of severe migraines.

I am so confused....I really thought the 72 hr EEG would show something since the quick 20 minute one did.

Please...any and all thoughts.

 

[Nakamova]

EEGs are not definitive. Even a 72-hour one. The earlier spiky EEG could been an indication of a seizure disorder, or it could have been a false positive. The long one could have missed abnromal brainwaves that are too deep to show up. Since EEG data is inconclusive, you and your doctor have to go by the symptoms and whether or not they respond to treatment. If the symptoms abate while on the Topomax, that's a pretty strong indication that they are seizures.

If you are not sure why your doctor started you on Topomax, ask! If the doc thinks it will help with both the migraines and the seizure symptoms, that's important to know when assessing it's effectiveness.

 

[Jan4you]

HUGS DAISY my gal!!

I do FEEL for what you are wondering about. What has your doctor told you? DId you have a follow up yet? Yes it would be so conclusive if a 72 hour EEG would have showed SOMETHING!!

I asked my doc if I could have a 72 hour VIDEO EEG at home and he said, No, they are not as accurate. They want to SEE our bahaviors. So.. maybe they would've SEEN one of your 'staring spells..etc. You did not have video EEG right?

Yes ask why you are on Topomax. ..and I bet you have not had a follow up yet with your neuro, right?

But man do I understand that disappointment. I will be having my 3-5 day video EEG IN the hospital mid June. I am sure they won't find anything.

but 2 out of 3 reg EEGs showed a little something going on.. no seizure activity.but "slowing" and a irritable focus which lead me to my 1st Video EEG at home..and that showed nothing. See?

Who the heck knows. BUt I have heard even folks with grandmals can have neg EEGs.

Another gentle hug my Daisy girl.

Jan

 

[daisy.girl]

I did go to the doctor....but he didn't have the EEG results, said he would call me that evening, but he didn't. I waited until the next afternoon and then I called.

The neuro said that even without the results he was going to start the topamax...because it would work for the migraines too, and he had waited to start it until after the EEG so it wouldn't mask any seizure activity. So, he started the topamax before knowing the EEG results!

I did NOT have a video EEG.

I think I read something about a PET scan being more accurate than an EEG? anyone heard that?

 

[epileric]

I think I read something about a PET scan being more accurate than an EEG? anyone heard that?

To my understanding a PET scan measures blood flow, oxygen use, and sugar metabolism whereas an EEG just measures neural activity (what you'd want to measure re. E).

 

[Endless]

A PET scan measures glucose uptake in the brain, and it is more accurate than an eeg in pinpointing where in the brain the seizures are occuring. Low glucose uptake equals a seizure area.

PET scans are usually done when someone is a candidate for surgery, and they want to pin down exactly where in the brain the problem is. Depending on which study you read, there false positive or negative rate is between a zero and fifteen percent. Some studies show that wrapping up in a heated blanket while waiting for your test lowers the rate of false results.