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Sound like an abnormal EEG?
Tue, 04/15/2008 - 19:42Comments
Re: Sound like an abnormal EEG?
Submitted by Erik J on Wed, 2008-04-16 - 16:53
Re: Sound like an abnormal EEG?
Submitted by stephsobota on Wed, 2008-04-16 - 18:08
Erik!
I’m sorry the doctors aren’t being helpful! I know the frustration of diagnoses and misdiagnoses. My EEGs have been normal – even my VEEG was apparently normal. (Though I didn’t have any nighttime shaky episodes – just my regular left-side spasms.) I was told that I have migraines and dystonia. Wow- so migraines make my right arm shake violently at night. Right. And it ain’t dystonia, neither.
I have frontal lobe epilepsy. One of the problems with FLE is that it doesn’t always show up on an EEG. Or it can be masked by muscle artifacts (e.g. facial twitching). And if you’re not seizing during the reading, then nothing might show up.
This PNKD stuff that I have – my primary daytime episodes – the left side of my face will tense up, then my upper left arm, then my left thigh. The muscles tighten for a few minutes, then release and I’m fine. Sometimes my face will spasm, and my voice will get whispery like I have laryngitis. We Move, a dystonia site has a bunch of info on PNKD and related dystonias http://wemove.org/pdys/ BTW most doctors don’t even know what PNKD is.
IMHO, some doctors rely only on surface EEG readings to diagnose e. If it don’t show on the EEG, it ain’t e. And if your symptoms don’t fit in whatever guidebook they look at, then you don’t have it. If you can, get another opinion, especially if you are still having problems. You might want to talk to a good movement disorder specialist, if nothing else, than to rule dystonia out. I ended up going to a teaching hospital an hour away- it was the only place I could find a neuro that could guess what was going on. (Though the epi-doc there didn’t know beans-he was one of the no typical surface EEG findings, no e types. It was the other neuros who helped me.)
I know I would feel like crap when the EEGs came back normal and the doctors would shrug. I’d be like, okay, what’s wrong with me then?
Did your docs order a MRI? The MRI doesn’t always show anything – mine was clean, but sometimes it can show something.
Good luck with all of this mess. I really hope you can hook up with a decent doctor who will listen to you!
Steph
Erik!
I’m sorry the doctors aren’t being helpful! I know the frustration of diagnoses and misdiagnoses. My EEGs have been normal – even my VEEG was apparently normal. (Though I didn’t have any nighttime shaky episodes – just my regular left-side spasms.) I was told that I have migraines and dystonia. Wow- so migraines make my right arm shake violently at night. Right. And it ain’t dystonia, neither.
I have frontal lobe epilepsy. One of the problems with FLE is that it doesn’t always show up on an EEG. Or it can be masked by muscle artifacts (e.g. facial twitching). And if you’re not seizing during the reading, then nothing might show up.
This PNKD stuff that I have – my primary daytime episodes – the left side of my face will tense up, then my upper left arm, then my left thigh. The muscles tighten for a few minutes, then release and I’m fine. Sometimes my face will spasm, and my voice will get whispery like I have laryngitis. We Move, a dystonia site has a bunch of info on PNKD and related dystonias http://wemove.org/pdys/ BTW most doctors don’t even know what PNKD is.
IMHO, some doctors rely only on surface EEG readings to diagnose e. If it don’t show on the EEG, it ain’t e. And if your symptoms don’t fit in whatever guidebook they look at, then you don’t have it. If you can, get another opinion, especially if you are still having problems. You might want to talk to a good movement disorder specialist, if nothing else, than to rule dystonia out. I ended up going to a teaching hospital an hour away- it was the only place I could find a neuro that could guess what was going on. (Though the epi-doc there didn’t know beans-he was one of the no typical surface EEG findings, no e types. It was the other neuros who helped me.)
I know I would feel like crap when the EEGs came back normal and the doctors would shrug. I’d be like, okay, what’s wrong with me then?
Did your docs order a MRI? The MRI doesn’t always show anything – mine was clean, but sometimes it can show something.
Good luck with all of this mess. I really hope you can hook up with a decent doctor who will listen to you!
Steph
Re: Sound like an abnormal EEG?
Submitted by MysticTuba on Thu, 2009-06-25 - 15:35
I see this has been here awhile but I found it via google after I was told I had a "normal" EEG after full-body spasmodic jerks during the theta range of the strobe light. I about was jumping off the table. As the frequency went up they went entirely away.
I've been telling people for years that when I try to move towards sleep (lower brain wave frequencies) my brain "fires" and causes my body to jerk like this, which of course wakes me up. I'm not diagnosed with any kind of epilepsy even though I take gabapentin in order to sleep.
I feel the most of doctors are idiots. Just because you got through medical school does not mean you are smart, and it certainly doesn't mean that you have any ability to see the forest through the trees or forge new pathways. You have to remember that when they say "normal" what they often mean is "the weird stuff we saw doesn't fit any legally-described "abnormal" medical condition, therefore you are "normal." And they then suggest, particularly if you are female, that you should seek psychological help as your symptoms are probably due to hysteria. (Probably all of the older doctors out there were actually taught this in medical school.)
I have figured out most of this myself; my symptoms are worsened consderably by things that I have now stopped eating. Unfortunately the list gets longer and longer. Almost anything that I eat on a regular basis will within a week or two noticibly worsen symptoms, and I only find out what was causing it when I eliminate it for a week or so. I have gone off gluten, nightshades (really bad symptoms, there) ALL animal products (once again, really bad symptoms), almonds, mung beans....blah blah blah. I don't get to eat much, and a lot of what I now don't react to are foods that I wouldn't have touched with a ten foot pole, before (I probably could eat a Twinkie if it didn't have gluten in it.) It's not the inherant "badness" of the food but the frequency of exposure to it. To me, this points to a digestive problem (bad case of leaky gut, I think) and frankly that's where I'm looking for solutions, via alternative practitioners because MDs only want to cut pieces out of you and then declare that the cause of your problem is a deficiency in some drug like gabapentin (sarcasm intended.)
MT
I see this has been here awhile but I found it via google after I was told I had a "normal" EEG after full-body spasmodic jerks during the theta range of the strobe light. I about was jumping off the table. As the frequency went up they went entirely away.
I've been telling people for years that when I try to move towards sleep (lower brain wave frequencies) my brain "fires" and causes my body to jerk like this, which of course wakes me up. I'm not diagnosed with any kind of epilepsy even though I take gabapentin in order to sleep.
I feel the most of doctors are idiots. Just because you got through medical school does not mean you are smart, and it certainly doesn't mean that you have any ability to see the forest through the trees or forge new pathways. You have to remember that when they say "normal" what they often mean is "the weird stuff we saw doesn't fit any legally-described "abnormal" medical condition, therefore you are "normal." And they then suggest, particularly if you are female, that you should seek psychological help as your symptoms are probably due to hysteria. (Probably all of the older doctors out there were actually taught this in medical school.)
I have figured out most of this myself; my symptoms are worsened consderably by things that I have now stopped eating. Unfortunately the list gets longer and longer. Almost anything that I eat on a regular basis will within a week or two noticibly worsen symptoms, and I only find out what was causing it when I eliminate it for a week or so. I have gone off gluten, nightshades (really bad symptoms, there) ALL animal products (once again, really bad symptoms), almonds, mung beans....blah blah blah. I don't get to eat much, and a lot of what I now don't react to are foods that I wouldn't have touched with a ten foot pole, before (I probably could eat a Twinkie if it didn't have gluten in it.) It's not the inherant "badness" of the food but the frequency of exposure to it. To me, this points to a digestive problem (bad case of leaky gut, I think) and frankly that's where I'm looking for solutions, via alternative practitioners because MDs only want to cut pieces out of you and then declare that the cause of your problem is a deficiency in some drug like gabapentin (sarcasm intended.)
MT