Non-Epileptic Seizures? HELP

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diane9986

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Ok, well I have only had seizures since 2008. they all started by a car wreck that i was in in 2006. Since then i have had 3 brain surgery's and a VNS implanted.... Now my epileptic seizures have stopped but I am still seizing... All of the non-epileptic seizures are just crazy! I have them a lot! like 4 out of 7 days a week some times 6 out of 7 days a week.

I know that they are stress related, when i have them i can see and hear everything that is going on around me and it is rather embarrassing.

I don't know how to stop them. Ideas PLEASE
 
Hi diane9986, welcome to CWE!

Were your seizures definitely diagnosed as non-epileptic, or is it just that nothing registered on the EEG? Just asking because a negative EEG doesn't necessarily rule out epileptic seizures...

If they are non-epileptic in origin, one treatment approach is CBT (Cognitive Behavioral Therapy). You can read a bit about it here: http://psychcentral.com/news/2009/05/01/cbt-can-relieve-seizures/5651.html

Best,
Nakamova
 
I have been diagnosed with both epileptic and non-epileptic seizures, since the last brain surgery my epidemiologist states that I only have non-epileptic seizures
 
I agree with the CBT suggestion as well.
However, if they're stress induced, it may be possible to reduce them or stop them simply by sorting out and dealing with the stress in your life.
 
I have them when I am at work.... I can't exactly stop going to work..... it is my insurance, my income, it allows me to live.........
 
How do you tell a "non-epileptic" seizure from a "real" one?

Lately, I've been speculating whether my diagnosis has been wrong and I actually have the "non-epileptic" variety since there are some obvious stressful situations whenever I have them.

Can you actually have a grand mal "non-epileptic" seizure? Whenever they did CAT scans or EEGs, they never found anything odd or unusual. And they started in my early 30's.
 
How do you tell a "non-epileptic" seizure from a "real" one?
Click to expand...
An excellent question, and one the docs are still trying to sort out. It can tricky because an estimated 20% of folks with non-epileptic seizures also have epileptic ones. The video EEG is considered the best measure, though it can generate false negatives and false positives, and doesn't tend to register certain kinds of epileptic seizures such as a frontal lobe ones.

From wikipedia:
"Some features are more or less likely to suggest PNES but they are not conclusive and should be considered within the broader clinical picture. Features that are common in PNES but rarer in epilepsy include: biting the tip of the tongue, seizures lasting more than 2 minutes, seizures having a gradual onset, a fluctuating course of disease severity, the eyes being closed during a seizure, and side to side head movements. Features that are uncommon in PNES include automatisms (automatic complex movements during the seizure), severe tongue biting, biting the inside of the mouth, and incontinence.

If a patient with suspected PNES has an episode during a clinical examination, there are a number of signs that can be elicited to help support or refute the diagnosis of PNES. Compared to patients with epilepsy, patients with PNES will tend to resist having their eyes forced open (if they are closed during the seizure), will stop their hands from hitting their own face if the hand is dropped over the head, and will fixate their eyes in a way suggesting an absence of neurological interference."
 
Telling them apart...

Unfortunately, I'm usually by myself when these events happen so I don't know what it looks like from outside, but this is useful information. I will say that for some reason, I am more likely to have seizures during special occasions like birthdays and holidays. Chrismas in particular tends to make me have them, I was in ER on Christmas Eve one time. The last one two weeks ago was on Memorial Day, and I was having anxiety about whether to go to a picnic or not. Vacations are another time when I've had them. Sometines they come on just because I'm scared I'm going to have one.

The only way I can account for it is such occasions are times when I am "supposed" to be having a good time - and I'm not. Also, I have a phobia about being with people - and I feel guilty and lonely.

One thing I know is I never bite my tongue, so maybe there isn't the teeth-chattering that usually happens in grand mals. It comes on very abrupt. People have said I hit and kick a lot. This past one I was beating off the police and screaming at them to leave me alone. They tied me down in the ambulance. It takes me about 20-30 minutes before my memory comes back and I can function again. No recurrences after that.

Does this indicate anything?
 
It could be a non-epileptic seizure. When I have then I have both epileptic and non-epileptic. My non-epileptic seizures have looked just like a normal epileptic seizure, I have had "drop" seizures, I have had seizures were my entire body is tight and I am shaking violently but I am having a non-epileptic seizure, absence seizures, exc....
One thing though that is easy to tell if i had an epileptic or non-epileptic seizure is my blood pressure after. With an epileptic seizure it will cause your blood pressure to raise and heart rate to raise also. With non-epileptic seizures they don't. My blood pressure is always right around normal maybe a little high but nothing to worry about. Example. My normal is 108/52 with an epileptic seizure it will jump to 180/80 or some crazy number like that with a non-epileptic it may go to 109/58 but nothing that drastic.
The seizures look the same but you are not as "out of it" after. I have also noticed that when I have a non-epileptic seizure I can usually hear or see or both when the seizure is going on. I may not have control over my body but I can still see/hear or both.
 
After Effects

In my own case, when I come to after a major blackout seizure, my memory is utterly wiped. It takes me awhile to get oriented in time and space, like what day it is, what's been happening, etc. That process takes me about a half hour, and I feel quite out of it the rest of the day.

This stuff about "epilectic" vs. "non-epileptic" seems terribly ambiguous. I mean, a seizure is a seizure, right?

I remain convinced that simply soaking the brain with drugs just represses it, it doesn't fix anything. It's as insane as using chemotherapy and radiation to cure cancer when they cause cancer. Or as nutty as electroshock to "treat" mental patients. (Believe it or not, that's coming in vogue again lately.)
 
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Or as nutty as electroshock to "treat" mental patients.
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Actually, electroshock can make a huge difference for some folks who are severely clinically depressed, and for whom medications and other treatments are problematic or ineffectual. My cousin undergoes electroshock treatment every 6 months or so, and it has helped him enormously. Oddly enough, ECT is essentially a tonic-clonic seizure administered in a controlled setting. Yes, it isn't ideal, but please don't discount its ability to help someone who would otherwise be unable to function productively and happily.
 
From someone who went form having 24-40 full on grand mall seizures in a 2 hour time frame to now taking 2 anti-seizure drugs that stopped the grand mall seizures and drop seizures but left the parti-mall seizures too then having a VNS implanted (that does do electroshock treatment every 5 minutes for 30 seconds to the brain) that has stopped the parti-mall seizures I would look into what you talk about before just saying things. For some people it works wonders! It is the same reason that if you close your eyes and smell and onion but bite into a potato you will taste an onion. Some things just work like that. Yes it doesn't make since logically but neither does the earth spinning around not held in place by anything. Sometimes it just works like that.
 
Thinking outside the box...

It sounds like there is a fixation on the usual approaches of treating the body like a machine that can be fixed by doctor-mechanics with other machines. The wholistic approach is that the body is a dynamic conscious living system like an ecosystem. What you do to one part affects the whole. Or perhaps there is some dissociation between the neurons that are causing the problem and the rest of the neruological system. Perhaps there is a way to "communicate" with these problematic neurons, find out what their problem is, help them feel 'accepted' and calm them down.

I suppose if I were having grand mals every week or every day, I would be far more open to taking lots of drugs to stop that from happening, just for some immediate relief. Maybe that's what works for you, but it doesn't feel right for me.

Before I ever took regualr medication, these events only happened 2 or 3 times a year. After I took medication, these events continue to occur a couple of times a year. Should I seek shock treatments or even heavier meds to stop what is happening a few times a year? Perhaps this indicates being open minded to alternatives.

In recent years, as I get older, these meds are making me more fuzzy brained, apt to lose my balance, out of it. 30 years of taking them are undoubtably taking their toll. I do need to function properly both mentally and physically - that is equally important for my general safety.

I'm suggesting thinking outside the box, looking at alternative approaches.
 
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diane9986 said:
then having a VNS implanted (that does do electroshock treatment every 5 minutes for 30 seconds to the brain) that has stopped the parti-mall seizures I would look into what you talk about before just saying things. For some people it works wonders! It is the same reason that if you close your eyes and smell and onion but bite into a potato you will taste an onion. Some things just work like that. Yes it doesn't make since logically but neither does the earth spinning around not held in place by anything. Sometimes it just works like that.
Click to expand...

I also have the VNS, but wouldn't say it has the effect of ECT for me. With ECT, electrodes are put on the patient's scalp and a finely controlled electric current is applied. The current causes a brief seizure in the brain.

With the VNS, it is thought that by stimulating the vagus nerve, electrical energy is discharged upward into a wide area of the brain, disrupting the abnormal brain activity responsible for seizures. Another theory suggests that stimulating the vagus nerve causes the release of special brain chemicals that decrease seizure activity.

All I have to do is place the magnet on the VNS if I feel an aura, and it will usually stop the seizure from spreading. That is definitely a HUGE difference from ECT! With ECT, they promote seizures.
 
Magnets...

How about putting a magnet right on where your focal point is? What is a VNS? I have heard of a thing called "magneotherapy"; it was actually in vogue around the turn of the nineteeth century.
 
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