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epileptic or non epileptic?

Thu, 11/21/2013 - 00:11
Hi! I am questioning my diagnosis of nonepileptic seizures. I have had just a few seizures over the past 10 years or so. I have had all the testing, been inpatient while they tried to induce a seizure and the works. Since they have come up with nothing they have diagnosed me non epileptic. That was thru neurologists. They referred me to a psychiatrist and am continuing on Lamictal. I asked him these questions and he was professional enough to tell me he did not know enough about non epileptic seizures to give me an accurate answer. Heres where i get confused.....after a seizure for the first few hours anything i put in my mouth tastes like chewing pennies. Except for grapes and no, i cant explain that one. Also for the first day i either cant speak or repeat the same phrase over and over. For the first day or so everything seems to be repetitive. It takes me about three days before i can safely care for myself and about five to seven days before i am back to normal. I am ok being diagnosed pnes but want to make sure it is the right diagnosis. Does this behavior sound consistent for pnes?

Comments

Re: epileptic or non epileptic?

Submitted by mereloaded on Thu, 2013-11-21 - 07:50
Consult a different neurologists. It is very possible to have clean tests nd still have epilepsy. Have they one a keep study or extended video EEG on you? Best wishes, P

Re: epileptic or non epileptic?

Submitted by pgd on Thu, 2013-11-21 - 09:08
Try to find a copy of the book, Nerves in Collision by Walter C. Alvarez, M.D. (about the non-convulsive epilepsies); also, x-ref: subtle, neurological side-effects from brain concussions, sports concussions, repeated sports concussions; impacttest; brainline. Best wishes.

Re: epileptic or non epileptic?

Submitted by rebmil on Thu, 2013-11-21 - 15:26

Hello. Just read your post and decided to comment. I did quite a bit of research on nonepileptic seizures. You see, I had a dr. who told me at an appt. I had with him that he now thinks my grand mal seizures are Psychosomatic Seizures. He is the dr. who told my boyfriend that my seizures are grand mal seizures, based on what my boyfriend told him concerning my seizures. His reasoning is because all the tests I had, CT Scan, EEG and MRI showed no seizure activity. I also have some undiagnosed medical problems like anxiety and depression which can affect nonepileptic seizures. But I know he is wrong because 5 years ago when I first started to have grand mal seizures only in my sleep, the emergency room dr. gave me a perscription for Dilantin. This med is used to treat grand mal seizures. The seizures I had stopped. I also took Phenytoin, again used to stop grand mal seizures, which stopped on this med. I was also put on Tegretol, which also stopped my grand mal seizures. 

In my research, I found out that nonepileptic seizures can't be stopped by any seizure medication. I also found out that there are certain characteristics that dr.s use to diagnose if someone is having epileptic seizures or nonepileptic seizures. Based on what my boyfriend has told me about when I have grand mal seizures and from what I have read about them, here are some characteristics of grand mal seizures. My boyfriend wakes up at night from the bed shaking from my seizure. He turns on the light and he sees my face and lips are blue and I have stopped breathing. He says my eyes are wide open and blinking rapidly like I am being electrocuted. He says my body is stiff as a board. When I come out of the seizure sometimes I look at him with a look of fear. He says it takes me about 30 minutes to an hour to come fully conscious and coherant enough for him to talk to me. I am confused after the seizure. The right side of my tongue is bitten and really sore. I have a terrible headache and I have peed my pants. My legs are sore. I also feel very nauseated. 

When someone has a nonepileptic seizure, their eyes are tightly closed. Each seizure they have the behaviors seem to change and the seizure is longer than 30 seconds. They shake their head from side to side, they do bicycling riding movements with their legs, they do pelvic thrusting and they come out of the seizure fairly quickly with no after effects like confusion. They also bite the tip of their tongue. 

I don't know if your seizures are epileptic seizures or nonepileptic seizures. You need to find a neurologist who specializes in those types of seizures and have them do a video EEG. That would definately show if your seizures are epileptic or nonepileptic. 

Well I hope my post has helped you. Take care and good luck.

 

 

Hello. Just read your post and decided to comment. I did quite a bit of research on nonepileptic seizures. You see, I had a dr. who told me at an appt. I had with him that he now thinks my grand mal seizures are Psychosomatic Seizures. He is the dr. who told my boyfriend that my seizures are grand mal seizures, based on what my boyfriend told him concerning my seizures. His reasoning is because all the tests I had, CT Scan, EEG and MRI showed no seizure activity. I also have some undiagnosed medical problems like anxiety and depression which can affect nonepileptic seizures. But I know he is wrong because 5 years ago when I first started to have grand mal seizures only in my sleep, the emergency room dr. gave me a perscription for Dilantin. This med is used to treat grand mal seizures. The seizures I had stopped. I also took Phenytoin, again used to stop grand mal seizures, which stopped on this med. I was also put on Tegretol, which also stopped my grand mal seizures. 

In my research, I found out that nonepileptic seizures can't be stopped by any seizure medication. I also found out that there are certain characteristics that dr.s use to diagnose if someone is having epileptic seizures or nonepileptic seizures. Based on what my boyfriend has told me about when I have grand mal seizures and from what I have read about them, here are some characteristics of grand mal seizures. My boyfriend wakes up at night from the bed shaking from my seizure. He turns on the light and he sees my face and lips are blue and I have stopped breathing. He says my eyes are wide open and blinking rapidly like I am being electrocuted. He says my body is stiff as a board. When I come out of the seizure sometimes I look at him with a look of fear. He says it takes me about 30 minutes to an hour to come fully conscious and coherant enough for him to talk to me. I am confused after the seizure. The right side of my tongue is bitten and really sore. I have a terrible headache and I have peed my pants. My legs are sore. I also feel very nauseated. 

When someone has a nonepileptic seizure, their eyes are tightly closed. Each seizure they have the behaviors seem to change and the seizure is longer than 30 seconds. They shake their head from side to side, they do bicycling riding movements with their legs, they do pelvic thrusting and they come out of the seizure fairly quickly with no after effects like confusion. They also bite the tip of their tongue. 

I don't know if your seizures are epileptic seizures or nonepileptic seizures. You need to find a neurologist who specializes in those types of seizures and have them do a video EEG. That would definately show if your seizures are epileptic or nonepileptic. 

Well I hope my post has helped you. Take care and good luck.

 

 

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