Week Long EEG

[Googsta]

I had 3 violent clonic seizures (no unconciousness, no incontinence) in May & July 2010.

I had an initial eeg which was normal. But as they only ever happened at bed-time my Neurologist arranged in-hospital testing.
Last April I was admitted to hospital for a week of EEG testing.

I got the results on Tuesday. They were all normal. I feel the cause of the seizures has been explained when I watched Cheney's 'The Heart of the Matter'.

But what does a normal EEG mean for my M.E? He had a copy of the ICC test interpretations & said according to that all is fine.


Edit: I should maybe mention that my M.E was quite good in 2010 & early 2011 when the seizures & testing occurred.

 

[taniaaust1]

Have you yourself seen the results and summary of the EEG? Something I myself have found is that they tell people their results are normal.. if there are abnormal unspecific findings found. The abnormal unspecific finding is thou one of the abnormalities found in ME.

Ask for a copy of your results so you can check things out for yourself. (Two out of three of my EEGS have had unspecific abnormality findings which are common ME findings but as they dont know what the abnormality is caused by.. they will conclude no issues found or put my results down to drugs I wasnt even on so ended with the conclusion my result was normal!! (I wasnt on any drugs at all and they didnt even bother asking to find out if it really was the reason for abnormalities they ignored).

The ME abnormality according to the Canadian consensus doc found in many of us including myself is "Elevated EEG activity in the the theta and beta frequencies and increased intracerebral electrical sources in left frontal region delta and beta frequencies in eyes closed condition may be indentified".

I only had 3 very short EEG (about 15-20 mins) but two of them did showed beta in eyes closed relaxed condition instead of the normal brain activity of that state and also through out the EEG
eg "the background has no normal alpha activity and is predominantly of faster beta rhythms throughout".

The EEG then thou concludes it itself "is non pathological" so then ignores the abnormalities found. Get yourself a copy of your EEG to find out if there truely was common found ME abnormalities showing in it or not.

 

[Googsta]

Hi Tania

When he said things were normal I asked him to go by the Canadian Consensus (I sent him a copy), he read it out aloud & said no, these were all normal.
I will ask for a copy though, I guess it's always handy to have if the seizures start up again or I kick off from one .

He say's they have no idea what causes Non-Epileptic Seizures (hello! peeps have died from M.E seizures!).

My 'short' eeg was with light stimuli etc. The other was hooked up for the whole week & filmed etc. But they didn't sleep deprive or get me to fast which is what I expected. I had some myoclonic jerks, but they are considered 'normal' too.
You are right, I was told my MRI's were 'normal' by 3 different Neuro's until I got my hands on the radiologists reports ).

 

[Googsta]

Anyone else have a normal EEG result??

 

[hixxy]

I had a normal EEG. I suggest your read Byron Hides book. From my read a while back, it is my understanding that EEG is far from fool proof. Apparently it can only detect abnormal electrical activity around the outter areas of the brain and not deep down in the brain. A QEEG is more accurate, but still not fool proof.

http://www.nightingale.ca/index.php?target=bookoffer

When I read it, they had a free copy you could download as a PDF. It's a huge book, I haven't actually finished it.

There is a lot of information in there on the limitations of neurlogical testing. Including SPECT, EEG/QEEG, MRI, PET. The testing is only as good as the person interpreting it as well. They need to know what to look for and most don't.

 

[hixxy]

Further to this, I had a SPECT done last year that I was told was normal. It was only when I had another doctor more familiar with these kinds of problems look at it that he saw that it was extremely abnormal. You can't rely on a radiologist's report. I had severe functional problems in the frontal and occipital lobe.

 

[eve789]

My neuro similarly told me my EEG was normal, but the report actually does state that the EEG was abnormal. Only the abnormality is "non-epileptiform." Non-epileptic seizures (i.e., a seizure where there is no EEG evidence of seizure) is psychogenic, period. That means, caused by stress or emotional trauma. Commonly, this is a trauma that has been repressed, and of which the patient has no memory. Also, women are three times more likely than men to have non-epileptic (i.e., psychogenic) seizures.

The incidence of seizures caused by repressed emotional trauma is also about the same as the incidence of MS.

*smirk*

 

[Googsta]

I just lost a big loong reply

So this one will be condensed...alot

Yes, there are people who have been diagnosed with 'psychogenic seizures'.

Non-epileptic seizures (i.e., a seizure where there is no EEG evidence of seizure) is psychogenic, period.

But this statement is inaccurate.

There are many Neurological & Physiological conditions that cause non-epileptic seizures.
People with myelin damage , including myself, have seizures. These seizures are documented in cases of MS etc.
Drug interactions, Deficiencies including people with Auto Immune disease's have non-psychogenic seizures.
There are many possible triggers.

One reason women have more seizure activity is due to hormonal changes. Of course, this was originally believed to be yet another womens hysteria issue.
But it is now well researched & documented to be a physical problem.

Thankfully both my Psychiatrist & my Neurologist believe I have ME, a real physical condition. My Neurologist admits they still know little about the brain & even less about non-epileptic seizures.
I will be asking for a copy of my EEG when I next see my Neuro.

Hixxy, I only just noticed your reply. Thanks for that info. I didn't know EEG had limitations, interesting particularly about only mapping the outer brain.

I completely agree regarding interpretation. I think it is the biggest issue & the reason why so many people remain undiagnosed with various dangerous conditions.
Too many patients have been diagnosed far too late as they didn't have a 'textbook' case & now have a greatly reduced life expectancy

My Neuro is pretty good as far as ME goes but he refuses to go by the radiologist's MRI reports provided by our local (large) hospital. He has a friend review them.

I find Neurologists the most particular when it comes to reports & machines. Neurosurgeons never question the radiologist & aren't fussy what machine they use despite doing microsurgery of the spinal cord .
I think this really shows how far behind Neurology really is in it's understanding of the brain.

And, just as when doctors had x-rays, they think the latest technology cannot possibly miss a thing. You also need to know what to look for. Too many people are sent home with life threatening injuries & diseases despite this great technology.

I'm glad you have documentation for your own peace of mind. Sometimes it's a two-edge sword though hey

 

[November Girl]

Just a quick question - did your week long EEG include any challenges? For my last EEG, I stayed awake the night before. During the test they also included a few typical seizure inducing conditions like flashing lights. (don't remember the others) I would expect these were included, but I've learned that what is standard in one area of the US is not necessarily standard in other ideas - let alone between one country and another.

Btw, this discussion reminds me that I still have not received copies of my actual EEG, or the accompanying report. I've asked for them more than once. Maybe if I send a certified letter it will help. The neurologist told me to be sure and ask for them on my first visit!!!

 

[Googsta]

No challenges. I was expecting them but for some reason they didn't do it.
I am an insomniac at the best of times so I'd probably need to be forced to stay awake for two days to get any result.
I have also heard they starve you as one of the challenges (fun lol).

If anyone has MCS I would avoid this testing as much as possible as the glue (yeah, real glue) they stick in your hair would completely floor you. I would describe my MCS as mild to moderate during relapses but it improves to mild when my ME improves & thankfully my testing was not during one of these bad phases.

 

[jeffrez]

"Normal" really means nothing when it comes to mainstream doctors & EEG. Unless you're in a coma or seizing on the spot they really don't know what they're even looking at - anything short of grossly pathological looks "normal" to them, and they don't compare against a normative database or consider the brain even in relation to itself.

If you're concerned or still having symptoms, you might want to consider looking for a neurofeedback provider in your area. Many of the better ones can assess you themselves, or if not, then send you for QEEG and then treat you on the basis of findings. Often with seizure there will be reductions in SMR (sensory motor rhythm) along the central strip, and that often can be corrected even in a few sessions. Some of the earliest research in EEG neurofeedback in fact was done in seizures and cats.