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epileptic or non epileptic?

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?


Re: epileptic or non epileptic?

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?

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?

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.



Re: epileptic or non epileptic?

Thank you for your post. My seizures start know the feeling you get in your head, like pressure or something, when you dive down to the bottom of a ten foot pool? Thats exactly how it starts. I am confused and although am aware of what is happening around me i am unable to communicate for the first day or so. Once when i had one and was in the hospital afterward a nurse showed ne how to turn the channel on the tv. A commercial came on and so i tried to turn the channel but just kept punching in the same numbers the nurse showed me and got frustrated when nothing happened. The only body movements i have during/after a seizure have been described as me being slightly drunk. I was in Florida once when this happened, before i was diagnosed, and they put me in a drunk tank for a week and took my daughter away from me. I may be looking for answers where there are none but i would really like to know. I only have these like every three years or so but sometimes they have serious consequences.

Re: epileptic or non epileptic?

I can't really say if I know the feeling you are talking about that starts in your head because all my seizures happen when I am asleep. But many times I would get an aura before I went to bed that told me I was going to have a seizure that night. I have 3 types of auras but they are not like the auras I have read about. I think that is another reason why that one dr. said my seizures were psychosomatic seizures because when I was telling him about the auras I get, he had an expression on his face like he did not believe what I was telling him. Like I said, my auras are not like the auras I have read about.

One aura I get is what I call the thought aura. This is where the thought "You're going to have a seizure tonight" pops in my head. I go to bed and wake up later and realized I had a seizure. I had this aura one day when I was going to take a nap. "You're going to have a seizure" thought popped in my head, I took my nap and woke up later realizing I had a seizure. This aura has happened 3 times since I started having seizures.

Another aura I have is what I call the icky feeling aura. This is where an icky feeling comes over me. It is hard to describe this icky feeling. It is like a heat type feeling that starts from my head and travels down my body to my feet. I feel hot all over and tingly. Some times my vision goes tunnel vision and my hearing goes dim too. Very weird feeling it is. This aura happens the most, especially for several days after I had a seizure. 

The last aura I have is what I call the smell aura. This is where I smell a spaghetti sauce smell. I have only had this aura twice, one when I was waking up from sleep and another when I was awake. I took a nap one day and I guess as I was waking up I smelled a spaghetti sauce smell. I don't know how much time passed but when I woke up I realized I had a seizure. The other time it happened I was on the computer. I smelled the spaghetti sauce smell and then felt really tired. I had to go lay down but I did not have a seizure. This aura has happened 2 times since I started to have seizures.

I know what you are talking about feeling like you are drunk after a seizure. Many times after I had a seizure I feel out of it and my brain does not work properly. I am forgetfull and seem to have memory loss.

One thing is you are lucky that your seizures only seem to happen 3 times a year you said? I only have my grand mal seizures during sleep once maybe twice a month. Then I may go several months without one and then the next month have 2 seizures, one one day then one the next day.

Also they have said there is a pattern to a person's seizures. But so far, I have not really found a pattern to mine. All I can see is the pattern of having one seizure one month then the next month have 2 seizures, then the next month have no seizures. Then the cycle repeats itself. I have also noticed that I have many seizures on a full moon. I have had 5 seizures on a full moon. I have had 5 seizures during daytime sleep. But my boyfriend tells me having seizures on full moons means nothing. But I still keep track of the phases of the moon and when I have seizures.

Well that is about it. If you can, have someone witness your seizures if you can. It would really help your diagnosis when you talk to a dr. Having someone witness your seizures if good because then they can tell the dr. what is happening during the seizure because most times the person having the seizure is not aware of what is going on. Take care.


Re: epileptic or non epileptic?

I will start with what a seizure is. All a seizure is is an electrical impulse going off in the brain wrong causing a chain feaction. Picture a set of dominoes. All set up next to each other with a little space between each. Tap the first and watch the reaction of them falling one into the next until they are all down.That tap was the electrical impulse the seizure was the dominoes falling into each other. Now medications are designed to stop those impilses.If you slip your finger between 2 of the domnoes it stope them from falling so the seizure stops.

If your seizures are convulsive your body will be tired and it does take time got get back to normal. The same type of seizure in one person will be different in another. They may have some of the things that are similar but it is like a meal some people can eat a lot others can't. Which is also why some medications work formany people but do not work for others as well as dosages of the medications.

When I was diagnosed with epilepsy the neuros were not specializing and it too about 1 year to come up with the information needed to be deffinate in saying it was epilepsy. I had gone thru about 15-08 EEGs with no abnormality. It was during a wek long set of tests which showed noting unusual. The last test they did was another EEG. Week long tests can wear a person out especially a 13 yr old kid. In that EEG I fell asleep and in that EEG they saw seizure activity. They looked at the area the activity was in on the EEG they then went to the neuro-angeogram (what would be todays MRI's) they looked closer in that area and they did find what is scred brain tissue which came from a blow to the head sometime between 6-8.

Almost every medication used as AEDs are used for other things and yes they can and do use them in other fields which have seizures. Dilantin wasa very good so was tegratol. The medication you were given is also a AED.

You might want to research the non epileptic seizures and read the information. From what I have read their seizures are not like the seizures you have been having.

Good luck but do try checking with another neuro who specializes in epilepsy


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