Non Epileptic Attack Disorder

[NEAD Scotland]

Hi guys,

I'm in a bit of a quandry as I was diagnosed epileptic in 1988, then in 2007 as non-epilepsy.
Kinda leaning towards the non-epilepsy after a lot of investigating, and started a support group for this at http://nead-scotland.org

All are welcome regardless of location, and we'd love to chat to you there.

Gerry

[Meetz1064]

Why the change in diagnosis?  I'm curious........

[NEAD Scotland]

After lots of seizures & many EEG's etc to investogate them, the consultants decided there were no abnormalities in the 'spikes' and concluded epilepsy not present.
The decision was taken after having a VEEG when in had a seizure during it but nothing showed on the graphs.

[ruthbrown]

Hi Nead

Here is my history of epilepsy, in the shortened form. When I was 6, I was diagnosed with epilepsy. When I was 21, I had my first tonic-clonics. I had them for years. I had no warning and would wake up in the hospital. Then I had my first STATUS EPILEPTICUS.That was caused by my hemorraging when my last son was born.  My husband was told I was going to die. I got confused, lost and repeating myself. Then I had my second STATUS EPILEPTICUS. That was about 1995. Diabetes, I had. Diabetes and epilepsy do not get along in the brain.

About 2 years ago, I had pneumonia and had to be put in the hospital. The hospital neurologist said that I had non-epileptic seizures. I fired her!!.

The rule of thumb is that if you have had 2 seizures, then you have epilepsy. How many seizures have you had?

Ruth

[ruthbrown]

Hi Gerry

I do not mean to make it sound like I do not believe you. How many seizures did you have before being diagnosed as a non-epileptic?

I was 6 years old when I was diagnosed with epilepsy. When I was 21, I had my first tonic clonics. Three in a row. That continued for a lot of years. Then in 1979, I had my first STATUS EPILEPTICUS. My husband was told I was going to die. Then about 1985, give or take, I had my second STATUS EPILEPTICUS. Again, my desperate husband was told to prepare for my funeral.

Then about 2 years ago, I had pneumonia along with my seizures. I was told by the hospital neurologist that I did not have epilepsy. She said I was faking them. I fired her!! I have epilepsy. Off and on I might have a non-epileptic seizure. I do not know.

I am now 65 going on 66. Get a second opinion! Do you have eptilogist's in Scotland.

[NEAD Scotland]

Hi Ruth,

My seizures take on a very strange pattern, as I can have anything up to 10-15 per day for months at a time then none at all for a long time.

Have had 2nd, 3rd, 4th ........ opinions and they all say the same.

We have epileptologists, neurosurgeons etc over here (some of the best in the world in my opinion) and all those who have dealt with my case are of the opinion I have NEAD.
One theory, however, is that I DID have epilepsy which rectified itself (can happen in a small number of cases), but as my brain has been 'trained' to take seizures it continues to do so.

I've never been told people thought I'm faking it - good thing really as I'd wipe the floor with them!!! lol

I was 14 when I had my first seizure, diagnosed at 18 and I'm now 38.

[Iwetklow]

Hi guys,

I'm in a bit of a quandry as I was diagnosed epileptic in 1988, then in 2007 as non-epilepsy.
Kinda leaning towards the non-epilepsy after a lot of investigating, and started a support group for this at http://nead-scotland.org

All are welcome regardless of location, and we'd love to chat to you there.

Gerry

Hi, at my last Dr. appointment. the Dr. actually asked me what do I want to do?  Because I have been clear of any eppisodes.  I want to get off medications, so I am getting another EEG to see how the waves are.  If that test looks good I can stop the medications.  But he didn't use the term non-epilepsy.  It has only been 6 mos when I had my first seizure.  I may check out your site.
Good Luck
Irene

[NEAD Scotland]

Hi Irene,

I'm not too sure if coming off the medication's is best, even if your seizures appear to have stopped (assuming the EEG's etc show you do have epilepsy).
You may find that the medication's are the reason the seizures have stopped, and coming off them may be detrimental.

Having said that, if the EEG's etc show no epilepsy is present then there's no reason to be on them as far as seizures are concerned as they only work to regulate the brain's electrical patterns.

I'd suggest mentioning NEAD to your doctor, as (although it's a very broad spectrum to cover) any epileptic type seizure NOT caused by the electrical patterns in the brain is termed as a Non-Epileptic Seizure or Attack (hence Non Epileptic Attack Disorder).

Certainly, have a look at the site and let me know if there's any help we can give you.

Take care

Gerry

[Iwetklow]

I will take your advice.  Thank you,
Irene

[ruthbrown]

Hi, it is to bad that this has not been put in the General Discussion.

1. Do not get off of your medicines. You can have both.

2. I have had NEAD sometimes. I need my medicines for my other seizures.

3. The word Attack means something is going on in the brain and it is a Disorder. Attack is an action verb.

4. Medicines may help some forms of NEAD. We do not know.

5. It is intractable, which means medicines do not help. That does not mean, it does not help our retractable seizures. Retractable seizures are seizures that are helped by our medicine.

6. It is also called NES,Non-Epileptic Seizures or pseudo-seizures. The word seizure means it is still a seizure. Some seizures do not show up on the tests if they are under control by medicines.

Ruth