Pseudoseizures...

[RobinN]

I do agree that she could easily hurt herself during a seizure. Not sure where he is getting his info from. In fact it could be that she grabs herself when she is having an aura, to hold herself together.

I don't see that it would be a bad idea to do more testing. My only problem with testing is that it is testing under the influence of drugs. Caught between a rock and a hard spot. The meds made my daughter loopy and caused more seizures. Odd side effects with each one. She is now med free, and is doing far better off the drugs than she ever was on them. Yet I didn't allow it to go ten years. When it wasn't acceptable I said UNCLE.

Thankfully we have a new neurologist that is willing to look at alternative with us.
Right now my daughter does a combination of nutritional changes, vitamin and mineral supplements, and neurofeedback. Life is good at the moment, and only looking better.

 

[Minkous]

I was told my seizures are probably non epileptic/ psuedo seizures yet still referred to Emory University for a better look. It really makes me feel crazy, like they Are saying it is all in my head by recommending me to see a psychologist because I have repressed memories I may not have dealt with. My frustration is i have lost a lot of my memory
From my childhood anyways. When I have these episodes I freeze and can't move, I am unable to move or speak. I know what is goin on around and am only
able to respond with my eyes. Sometimes like today my mom would be able to shake me out of it for a couple second and back I went and started getting real tired and clamping my jaw then smiling intensely with no control. What do y'all think? It worries me cuz this went on for 45 mins today. I have a video I could even upload but I'm a little shy to show that.

 

[Ruth]

That is hard to deal with, right now. Since you are being referred to Emory University, I am sure that they will get to the bottom of it.

Did you have an EEG? If you did, epilepsy seizures only show up if you are having a seizure during an EEG?

I like the term NEAD, (Non Epileptic Attack Disorder.) It is a more accurate term. Your brain waves are still acting up. It is real!!

You "freeze and can't move," it could be something besides epilepsy or NEAD all together.

Let us know what the doctor says. There is someone else from Atlanta, GA that you might want to talk to. She knows a lot of doctors, her name is Belinda5000 here at CWE.

Once, a doctor told me that I had psuedo seizures. I have real epilepsy. She based it on an EEG. I did not have a seizure during the test.

A Video EEG is accurate.

Take the video to your doctor and let him/her look at it. Then the doctor can give you a more accurate diagnosis of what is going on.

Take care,

 

[marika853]

Brain,
How would I forward the Hungarian version to someone? My sister-in-law who lives in Hungary seems to believe that I can go without my meds.
Thank You,
M

 

[Ruth]

Bernard owns the forum. Ask him. He will answer your question.

How are you doing on your meds?

 

[Minkous]

I've been 3 weeks with only one spell of freezing up again and even getting lock jaw so bad I thought my teeth would break that lasted 45 mins and this time I started faded in and out like I was goin to sleep. But I've had no TC's which is good news.

I've done the 48 hour EEG and they found 6 suspicious activity but not sure if epileptic in nature. Idk how are the doctors gonna catch a TC on video when you only have one to two tonic clonics a month?

 

[Ruth]

I have never had a Video EEG. I was diagnosed when I was six years old. My first Tonic Clonic did not show up until I was a Junior in High School. My epilepsy is heridatary. My sister and father both had epilepsy.

I have learned this on the forum here. I am telling you from other people's experience.

Have you told your doctor about lock jaw? Could you have something else going on? It sounds serious. I would ask the doctor's at Emory University.

If you have NEAD, it will not show up on any test for epilepsy. But truthfully, I think something else is going on. Let me know. Even some people with epilepsy, here at the forum see a psychologist. I have even thought sometimes of going to see one. It is nothing to be ashamed of.

There are some people here at the forum who do have NEAD and they stay here. You still need help here dealing with the seizures.

See your doctor and tell him about your lock jaw. That sounds serious.

Please keep me updated.

Marika853, Brain's account is closed. Is your sister-in-law a doctor? Never go places without your meds. Ask your doctor. You need them for your seizures. If you have NEAD, you still have to take them to calm down your seizure activity.

 

[cuppycake21]

I've been 3 weeks with only one spell of freezing up again and even getting lock jaw so bad I thought my teeth would break that lasted 45 mins and this time I started faded in and out like I was goin to sleep. But I've had no TC's which is good news.

I've done the 48 hour EEG and they found 6 suspicious activity but not sure if epileptic in nature. Idk how are the doctors gonna catch a TC on video when you only have one to two tonic clonics a month?

Minkous..glad to hear you haven't had any tonic clonics. Having a psychological root to a seizure doesn't make you crazy. Not in the least. I'm not a doctor...just a chick with seizures who, like many of you, is always researching looking for answers. Anyway, your description of your seizure made me think of the Fight/Flight or Freeze mechanism. It sounds like your body is in an exaggerated freeze response. Is this why they think it has a psychological basis? Is it a form of PTSD?

 

[vekasuiv]

hello john,
I read your post. my girl is doing exactly what you described- hyperventilates, then hold breath then got myoclonic seizures. she is doing this cca 20x per day. how could I stop her? she does not understand. did you used some medication to control breathing?
thanks