rare sharp waves - frustrated & worried

[elizzza811]

I have independent generalized seizures and recently had a 6-hour video EEG just to see if I still have something 'electrically wrong' going on. Some drunk-like episodes, one followed by confusion and disorientation, needing help finding my way out of my own bathroom.

The results are in: normal EEG with just a 'rare sharp wave'.

Here's where I need your input. After my car accident I had several EEGs...one came back normal...one came back with some possible abnormalities...and the third, my 72-hour EEG, finally showed some abnormalities. Bingo. 'Seizure potential' were the words my neurologist used, as apparently I had not suffered any outright seizures during the test, but this 'potential' was enough to explain my loss of awareness behind the wheel and get my diagnosis of epilepsy. This post-car-accident EEG showed sharp waves as well as some other kinds of abnormal waves. I forget which though. I'd have to check.

So now I have this video EEG with those 'rare sharp waves'. When I asked the NP what these meant she said that it just meant I had a 'seizure history'.

I'm not sure if I'm asking this correctly, but wouldn't seizure potential and seizure history kind of be one in the same? Are sharp waves pretty much harmless and something all epileptics will show because of their 'history of seizures'? Or could these sharp waves be 'seizure potential' too? I know I'm supposed to trust my neurologist, but I don't.

I managed to talk her into a 72-hour ambulatory EEG, but it was like pulling teeth.

The other thing bothering me is I think the 6-hour video EEG was pointless. She told me they were looking for twitches and jerks that I might not notice myself. Really??? I laid there with my shoes on, covered with a blanket, and slept for 4 of those 6 hours on my side facing away from the technician. Had they told me that this was what she'd be looking for I'd have made sure I was more visible. But seriously, I think my husband or I would have noticed any jerking or twitching ourselves anyway. My neurologist told me before the test that she didn't want to tell me what was involved because she didn't want me to 'practice'. Again...really???

I don't seem to have any luck with 'timing' of seizures either. After a seizure, I would always be so tired and sleep so well. Like last night I slept like a baby, but I felt horrible before I went to bed...bloating, clenching, hot flashes, nerve pain in my left ankle, pains in my head on and off all day. This morning I felt refreshed. And of course I had no electrodes on my head. Some of these symptoms I just mentioned could be autonomic in nature, yet neurologists seem to want to dismiss them. The bloating was horrible...I felt like a balloon.

And why does it seem that I can pull up a million articles on the internet stating that a normal EEG does not rule out seizures because there is only a small window of recording time to work with during which a patient must show abnormalities, yet doctors are so quick to dismiss things? Frustrated. Sorry so long...

 

[elizzza811]

Guess nobody knows...

 

[Bidwell]

I wish I were articulate enough to express my loathing for these neurologists and their little ways. It is hard to believe they have an medical degrees.

 

[cawhitern]

First of all let me say I'm sorry you're having to deal with this. It doesn't appear your neurologist is very engaged. Unfortunately, in medicine today there isn't very much explaining and teaching that goes on and we have to be detectives of sorts. Doesn't seem to make much sense, eh?
I don't know the answers to these question but I wish you good luck in finding them.

 

[skyfire322]

I think this is why they call it "practicing" medicine. I'm so sorry you're having to deal with this mess, and I hope that this situation turns around for you soon!

I know I'm supposed to trust my neurologist, but I don't.

I managed to talk her into a 72-hour ambulatory EEG, but it was like pulling teeth.

The same thing is happening to me. My neurologist here in VA is very wishy-washy with his decision making, and his bedside manner is terrible. I had suggested an MRI because of my constant migraines and since I haven't had one since I was first diagnosed 12 years ago, I thought it'd be good to cover all my bases just to be on the safe side. His answer was just another EEG (I've had five in the past two years with this guy and he always gives me the same answers)

One day I said to myself "enough is enough", took a three hour trip to see an actual epileptologist, and I couldn't be happier.

:soap:

 

[elizzza811]

Thanks for your replies. I'm even more confused after reading the actual results of my EEG. How could they call this 'normal'? My neurologist even uses the word ABnormal in her impression of it yet gave me the okay to drive...? I pushed for a 72-hour EEG and am having that done in 2 weeks. Still, 'seizure potential' was all any EEG after my car accident ever showed, and it was enough to remove my driving privileges for over a year.

IMPRESSION
This is an abnormal 6 hour video EEG due to the presence of
2 left frontotemporal sharp waves seen during the recording. These findings suggest epileptiform potential. No ictal events are identified. No video events were recorded. The patient complained of some right-sided head
pain, as well as a weird feeling in her right calf without electrographical correlate.

 

[Angelita14]

I understand your frustration! Honestly, sometimes it feels like your banging your head against a wall! Keep pushing for answers. Neuros aren't the brightest of people.They don't know what to do unless the answers are black n white. Good luck.

 

[Nakamova]

This is an abnormal 6 hour video EEG due to the presence of
2 left frontotemporal sharp waves seen during the recording. These findings suggest epileptiform potential. No ictal events are identified.

Spikes and sharp waves can be an interictal (between seizure) sign of a patient with epilepsy. That's certainly the case with me -- my eegs are characteristic of epilepsy, though I've never had a seizure during one. So if your neuro doesn't think that the combination of your symptoms and your EEG don't indicate epilepsy, she should provide an explanation why.