Psychogenic non-epileptic seizures

[John-Forrest]

In the course of my research today, I stumbled across this one. There are cases of "psychogenic non-epileptic seizures" - which are not "fake" seizures (as in trying to get attention), but very real and as dangerous as the real kind. The problem is, meds do nothing for these kinds; only psychotherapy does.

Check this article: http://en.wikipedia.org/wiki/Psychogenic_non-epileptic_seizures#Treatment

Or go to Wikipedia, type Psychogenic Non-Epileptic Seizures.

Has anyone suspected they may had been somehow misdiagnosed at the outset?

 

[RobinN]

That is my understanding as well John.
Real and dangerous, yet no EEG abnormalities. Meds do nothing, and yet would a nutritional change help? I think so.
The only way to know for sure, is to have a seizure while being hooked up to a video-EEG monitor. However, a normal EEG does not mean that there is not a classic seizure occuring. There lies the difficulty for doctors to diagnose.
My daughter was diagnosed by one Hospital as having PNES.
We have since been confirmed that Rebecca has classic Tonic Clonic seizures.
Psychotherapy helps in both types of seizures IMO
My beliefs are, that many are a manifestation of an underlying unknown cause. Kindling could very well occur if the negative aspects of the disorder are not dealt with. Seems to me that is why neurofeedback would be a positive choice, since it would get one out of the cyclical pattern. However, the underlying "cause", needs to be dealt with.
That is why the two go hand in hand, IMO.

 

[montse]

That is my understanding as well John.
Real and dangerous, yet no EEG abnormalities. Meds do nothing, and yet would a nutritional change help? I think so.
The only way to know for sure, is to have a seizure while being hooked up to a video-EEG monitor. However, a normal EEG does not mean that there is not a classic seizure occuring. There lies the difficulty for doctors to diagnose.

I have had some "normal" EEGs, and here I am.Even a doctor said it was not epilepsy, it was for him stress, but one day a friend saw me while I had a seizure, and he told me what happened, so I changed the doctor and I begun with depakine (depakote).
I was much better, I had a siezure per year, and before it, I had 5 or 6.

 

[Bee91]

I have been misdiagnosed by several doctors with Psychogenic Non Epileptic Seizures. A lot of my EEGs were normal. But some did come back abnormal. I have no idea why they diagnosed me with PNES when I did have abnormal EEGs. But I was never started on any meds until I switched doctors another time. And when I did take meds, the meds worked. It turns out I do have epileptic seizures, and now brain damage because of the length of some of my seizures.

 

[John-Forrest]

This is interesting. One of the reasons I suspect I may have the PNES variety is EEGs have always shown perfectly normal. Also, I have seen NO difference prior to meds or after meds in frequency of seizures. In recent years, despite attempts to increase meds, frequency has gone up. And I suspect that is because my brain is so habituated to meds it didn't need in first place, it has become dangerous to stop. Meanwhile meds are just twisting my poor neurons every which way!

 

[epileric]

Be careful

I've had numerous EEG's where I've had a seizure while being hooked up & nothing registered. One neuro even took me off all my meds (it was then that I fired him as my neuro) thinking it was a psychological problem. A year after that they finally found the lesion in my brain that was causing the seizures.

I've had E all my life but was 39 before they finally found the cause. Don't be too quick to jump to the conclusion that you're having PNES. E. is caused by a number of things & not all of them are that obvious.

 

[Bee91]

EEGs cannot always tell whether or not you have epilepsy. Even if you have a seizure during the test. It is just an unreliable test that unfortunately, doctors have to rely on. Sometimes, of course, it does do good. But there are some chances that your case may be one where EEGs just can't detect.

Doctors usually have other ways (also not very reliable) to try to help distinguish between epileptic and non epileptic seizures:
loss of bladder control
whether or not your eyes or open
certain movements
things like that...but those things can't always tell..

People can also have both epileptic and non epileptic seizures. According to some article I read, 25% of people with epilepsy also have PNES and I think (I'm probably wrong on this one...this was a long time ago) 2% of people are misdiagnosed with PNES when they actually have E.(maybe that's switched I don't know....?)

 

[brain]

Reason why EEG cannot possibly be the Gold Mine

John:

eMed - Frontal Lobe Epilepsy

Other Tests:

* Scalp EEG and prolonged video-EEG monitoring: All patients with frontal lobe epilepsy should undergo EEG evaluation. Patients with intractable epilepsy, or in whom the diagnosis is doubtful, should undergo prolonged video-EEG monitoring. If the events are primarily or exclusively nocturnal, polysomnography should be considered, with extended EEG montages if available.

o Interictal EEG

+ Findings may be normal.

+ Spikes or sharp waves may be absent; may appear maximal unilaterally, bilaterally, or in the midline; or may appear generalized due to secondary bilateral synchrony.

+ Background rhythm abnormalities with or without focal slowing may be present.

o Ictal EEG

+ Closely spaced frontal electrodes can enhance localization.

+ Ictal onset often is seen poorly from the scalp and is highly variable in appearance.

+ Muscle artifact may obscure EEG.

+ Lack of ictal discharge in the temporal lobes suggests a frontal onset.

+ Video analysis of seizure semiology may suggest frontal epilepsy.

+ Postictal slowing also can be confirmatory, and at times, localizing or lateralizing.

But if you click on the link above it will give you
even further depth. Then there's epilepsies that
are DEEP into the brain that are not within the
surface and not picked up by EEG's, whereas
the grids must be used. The MRI, MRA, CT,
etc Scans may come up normal - but; sometimes
usage of grids will pick it up!

SO therefore EEG being the "GOLD MINE" is
eliminated, because FLE is common too.

 

[Bee91]

yeah...my kind of epilepsy is deep in the brain. The EEGs did show abnormalities, but not what they were looking for. The only way we would know exactly where my seizures are coming from was to do a
intracranial EEG? I don't know if that is the right word....onder: something like that...

It could be the same thing for you.
Or Frontal Lobe Epilepsy is another thing that has normal EEGs. Have you ever had a prolonged EEG? If not, maybe you should look into something like that...

 

[John-Forrest]

My understanding is EEGs are an extremely crude way to measure what is going on in the brain. They only pick up what is near the surface and only summarize what the majority of neurons in that area are doing. The focal point could be merely a couple of neurons raising hell so the rest of the brain raises hell too.

I can actually "hear" my focal point, a kind of high-pitched ringing within my right inner ear (right temporal lobe). Incidentally, I also have a neurological hearing loss, deaf at high frequencies, better at low frequencies. Whatever caused damage to the auditory nerves may had also hurt something further inwards. In any case, when it is ringing VERY loud, I know I better head for a bomb shelter.

Ultimately, what tests whether we are or are not having seizures is our very own internal monitoring. Perhaps they will develop machines that can actually measure individual neurons, or even worse, individual thoughts (a great tool for a technological dictatorship). It is a bit difficult to get into that without making the brain crash completely (i.e. death). So perhaps it will never happen.

Perhaps a prolonged test will reveal something. This is one of the reasons I want to get my hands on an EEG machine I can use at home to find out what is going on in there.

 

[brain]

Perhaps a prolonged test will reveal something. This is one of the reasons I want to get my hands on an EEG machine I can use at home to find out what is going on in there.

You can!

1) Go to College / University - spend years
there in Neurology / Neuroscience - become
a Medical Doctor

2) Get your own private practice

3) Get your own equipment

4) Play with it as long as you'd like

:hj:


Attention: Advisories above not recommended.
Just spur of a moment stupidity post.

 

[Bee91]

I did one of those ambulatory EEGs...where you can be at home and do whatever you want while being monitored. I liked that so much more than the video EEG where you're stuck in a hospital. They were able to find some abnormalities in my case with that test. Your able to move around and go places (with a big annoying, embarrasing sock on your head but it could be worse) The only bad thing about it is your not being video taped :?

 

[John-Forrest]

No, I'm trying to advocate for insurance coverage of this kind of thing. Also I think there is a bit of MD mystique about how difficult home EEG biofeedback is. Obviously the MD community has vested interests in this.

 

[RobinN]

Did you see the great news that came out today John?

You can read it here:
http://www.webmd.com/balance/features/biofeedback-for-epilepsy?page=2

I am so excited!

 

[John-Forrest]

Robin,

I looked at web page, it does sound like biofeedback is becoming an accepted treatment for a lot more things than epilepsy. Perhaps in the coming year, we will see reasonably priced EEG gadgets one can hook to a computer and watch where one's brainwaves are at a given moment (even carry them portably). My primary MD has already said she would be quite willing to write me a prescription/reference for biofeedback. Trouble is getting the insurance companies to do it.

I am considering making a legal case about having MassHealth (a kind of state-funded health care for disabled or senior citizens) cover this - as well as home devices. I work in a disability rights organization (Stavros CIL) and they may help me do this. I would propose others make demands like this to their own states or insurance companies. For one thing, such devices would be far less expensive in long run compared with a lifetime on pills.

 

[RobinN]

I would perhaps put it a little differently. I don't want to demand just yet.
I would rather make my case with BCBS and show them this latest information.
In addition I would also like to suggest that it might be far cheaper to consider this approach, than to deal with a cracked skull from a fall, or multiple trips to the ER. I think Insurance companies are getting tuned in to the fact that each patient is far better in managing their health issues than many MDs are. In fact I think I read there is a name within the medical insurance field for this.

So my only point would be to edge in slowly and make these requests.
I might, in Rebecca's case start the treatment, show some positive results and then ask for reimbursement. If my car needs repair I am going to make that happen, even if the insurance doesn't cover it. I will just make changes in my lifestyle to see this through.

I don't necessarily want to see these devices in the hands of people not adequately trained to use them. That might make the pendulum swing in the opposite way real fast.

 

[john1947]

myoclonus

Hi, I had my first EEG in April.It came back as nonepliic myoclonus.I had alot of jerks through out the test with more frequent with the strobe light,my right arm got pretty stiff.Ive tried different med changes ,stil the jerks come.Usually when Im quite and sitting.Concentration or staying busy keeps them away. I also have PD but have found few like me.Motion like driving or sitting bummpy rides are the worst.
thanks
john

 

[Nakamova]

john -- did your doctors prescribe anything to help with the myoclonus?

 

[john1947]

Hi. the doctor at the hosptial prescribed clonazepem
but it didnt work out with my PD meds.Much better off. It made me super unstable and when it wore off the jerks were worse.
Sometimes i think my back issues are bringing it on somehow

 

[Nakamova]

john -- some folks with PD report similar symptoms, so there may be a connection:
http://www.parkinsons.org.uk/forum/thread/55533
http://www.ncbi.nlm.nih.gov/pubmed/12210853