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non epileptic seizures

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Old 03-02-2005, 10:05 AM   #1
Join Date: Mar 2005
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jpederson HB User
non epileptic seizures

Does anyone know anything about nonepileptic seizures? I went to the Mayo Clinic last May and all my tests came back normal. Does anyone know what triggers them? I also have depression and panic attacks. I want to find out more about this type of seizure. I have three young children and I am afraid something will happen when I am alone with them. I always remain aware but I cannot communicate or move my body. Sometimes I have the shakes, make funny noises, eye rolling, blank stares and other typical epileptic symptoms. If anyone knows anything I would appreciate it.

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Old 03-02-2005, 12:13 PM   #2
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Location: Dayville, Ct. USA
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kayakmom HB User
Re: non epileptic seizures

I know that many people get misdiagnosed with nonepileptic events and they really have epilepsy.

Usually the nonE ones are caused by some trauma in your past. It can exist along with true electrical seizures, however.

Did Mayo capture your typical events on VEEG? This is one way to be somewhat sure it is not electrical or epileptic in nature, but not sure fire. IF you have a focus that starts DEEP in the brain, the surface electrodes may fail to pick it up and show as normal.

A second opinion might be a good idea. Have you had other abnormal EEGS? Have you been on seizure meds at some point? Did you improve on meds? These are all things that would help you show that it is epilepsy and not non E.

I think Non e, though a real thing, is far to easy for neuros to pin on someone when it is tough to diagnose. try a ****** search on nonepileptic E and you should find good info that might help yu.

Of course you are concerned since you have children to care for. I would try and keep looking for answers!!
mom of 2 teens who have battled seiuzres.

Old 03-03-2005, 04:18 AM   #3
Travis from MN
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Re: non epileptic seizures

Do you have a frequency at all? do they occur atleast once a month, less; can you say if stress triggers them at all?

I'm suprised Mayo was somewhat inconclusive.


In general reasons some patients may have seizures:

sickness as a child (effects then, or later ages at times)
brain trauma
inherited (any family history; either side of parents?)
and there are some that are simply unknowns for why seizures start when they do and why we didn't have them before.

And just as the reasons WHY; the degree of severity it can range as well.

Some may have just "aura's" and never anything more than that.
Other people may suffer major seizures multiple times a day.
and everything inbetween is there as well for patients with seizures. Some have multiple types.

it is different from patient to patient.


Old 03-03-2005, 11:29 AM   #4
Join Date: Mar 2005
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jpederson HB User
Re: non epileptic seizures

We have strong family history of seizures and I also had meningitis as a child. I read that both of those can be contributing factors. My triggers (from what I can figure out) are exhaustion, sugar intake, stress and hormones. For a long time I had four and five a day. Now I have them five or six times a month. Mayo diagnosed them as non epileptic because my brain activity did not change. The seizures drive me crazy and I have been known to lose my sense of judgement and drive my children even though I feel one coming on. Some are mild and some can last for an hour or more. I usually am exhausted afterwards and sleep for 2-4 hours. Thanks both of you for writing back. I just want to figure out a way to make all of it stop.

Old 03-04-2005, 02:15 AM   #5
Travis from MN
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Re: non epileptic seizures

An hour or longer is not good to hear. :/

It depends on the patient for lengthy seizures and what to do. They (dr's, hospitals, etc) say if it's longer than 5 minutes to call for help. I don't agree with that depending on the patient. If I have a GM and come out without bleeding, no broken bones, and I have people around me that know what to do; going to a hospital will do nothing but rack up bills; possibly give you a drug overdose.

But if it's an HOUR long thats a DRASTIC SEIZURE that may be something to reconsider if you should go or not... I hope it is a short seizure and the post seizure effects are lasting that long... If the seizures are that long you may consider other actions if there's not another adult in the house to observe your safety. It could be "cluster" GM's (one after another).

Being tired after a GM was very common with me. I'd crash for 2-4 hours and I'd be a little tired even after the sleep, but for the most part recovered of the after effects.

I hope there's others in your house, neighbors, good friends, relatives etc that can take over the driving. If you are not well controlled driving is something you may need to look at hanging up until you have control :/ .

That makes me concerned if you have had seizures THAT long.


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Old 03-13-2005, 01:50 AM   #6
Join Date: Nov 2004
Location: Michigan
Posts: 102
brennd8 HB User
Re: non epileptic seizures

Hi, I'm new. I also have non epileptic seizures. I was checked out at Cleveland Clinic, and they told me nothing showed up on the monitors. They basically told me to go home and take it up elsewhere.
Mine also lasted from 1-2 hrs and were horribly painful. I have since found out that I have Lymes Disease, which is an infection and my doctor believes this is causing my seizures.
I am on Biaxin and Doxycycline, alternately and that has cut the seizures done to 1x a week and only last from 15-30 minutes.
Have you ever experienced you voice changing? I am from Michigan and after the seizures, my voice changes to sound very Southern or slurred.
I would love to hear back from you.
PS I alsp have 2 children ages 4 & 5. My 5 yr old knows exactly what to do and that has been a Godsend!

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