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karbear023 10-12-2008 08:17 AM

grandmal seizure?
I am 54 years old and in august was taken by ambulance after having what my daughter said was a seizure. I had be having a tremendous amount of stress prior to the event. I was having problems for months with my speech stopping in mid sentence. The morning of the event I felt alot of stress, my daughter came in to visit and I told her I felt bad. She said I had a shake that started at my head and stopped at my feet. She took me in and sat me on the couch. I don't remember anything after this point. She said both of my arms bent at the elbows and made a fisted claw and and both legs well pointed with my toes pointed, they were moving together up and down, my legs were beating against the table, my head fell backwards and came up and down. This happened for about 2 minutes. My eyes were shut and my mouth open with gurgling noises in the back of my throat like I was foaming. She told me I woke up for a minute afterwards and told her how tired I was and fell asleep and started snoring. She tried to wake me up but couldn't. After about 5 mins of sleeping I was very confused and agitated. I didn't know my last name and what had happened.
They took me by ambulance to the hospital. They did an EEG that showed what they called "no denying periods of rhythmical changes that looked like generalized seizure activity with slowing that could be metabolic encephalopathy or epileptical". They sent me home with keppra and I went back in one day later with the worst headache I have ever had with intractible vomiting. This turned out to be a migrane.
I followed up last week with a neurologist that hadn't seen any of my test and I didn't know to bring them but shocked me when he said he thought it wasn't a seizure as I had my mouth open and didn't wet my self. I did have to urgently go to the bathroom as soon as I was able to walk. He also didn't think it was a seizure because my muscles weren't sore.
I was floored.......... I'm wondering if I could get feed back with anyone that had a grandmal seizure, had their mouth open, didn't feel sore and didn't wet themselves.
I appreicate any feedback that I could get with regards to this. I'm thinking of getting another opinion.
BTY, my phosphorous level was low with the seizure. I don't drink alcohol. my liver enzymes on admission were normal until they gave me anticonvulsants. They went back down after a week.

n8tivecenter 10-13-2008 07:16 AM

Re: grandmal seizure?
Hi There.
YES, get another opinion. Just because you do not feel sore, and do not wet yourself, that DOES NOT MEAN that it wasn't a seizure.
I have Grand Mal seizures, and I do not wet myself, however the symtoms that your are stating sound like a type of seizure that I have had.
Try an Epileptologist, this is an in depth Dr. who knows more about Epilepsy/seizures than Neurologists do. (In my opinion)
Hope that this helps you.
And I hope that you feel better. :)

karbear023 10-13-2008 08:20 AM

Re: grandmal seizure?
First of all I want to thank you for your kind response, it is really nice to know others are out there that can identify.
He also said that I was out of the age bracket for a seizure, although, when I was in my 20's I had an eeg that was abnormal and the dr. thought it was petit mal or some type of epilepsy.
This doctor said all grandmals close their mouth and bite their tongues. Mine was open, according to my daughter, but she thinks I wasn't breathing for a minute as I was gurgling sputum in the back of my throat.
I guess thetr are all kind of seizures, I think he's thinking it was a stress type of deal. He mentioned that. I was under the assumption if it was a stress seizure that my eeg would have been normal. They were both abnormal. The second one after I was given, dilantin and tegretol showed difuse slowing.
This is so difficult, I can't remember most things, having lots of problems with short term memory and nothing of my whole 3 day hosp stay.

Thanks again for helping

n8tivecenter 10-13-2008 11:02 AM

Re: grandmal seizure?
Hi There.
Your Welcome! :)
I am glad to help. I understand what it is like to have someone to relate to health conditions. It can be a lonely place.
I would suggest taking naps. Rest is always good for us. :)
I also, too have short term memory loss. This has been worse as I am getting older.
Let me know if there is anything else!

karbear023 10-13-2008 05:28 PM

Re: grandmal seizure?
Thank you for your support. I have another question if you don't mind. Has your prolactin level been high with grandmal seizures. The neuro said it's not a grandmal unless that level rises.

Thanks again,

n8tivecenter 10-13-2008 06:41 PM

Re: grandmal seizure?
Hi again.
I do not know anything about that type of medication. <removed>
As far as a Nuerologist stating that you do not have Grand Mal's unless a level is high, I am not sure if that is accurate. I have never heard that.
Maybe try an Epileptologist?!

karbear023 10-14-2008 05:35 AM

Re: grandmal seizure?
The prolactin level is a blood test that they run after you have a grandmal seizure.

I'm so tired of this whole thing. It has turned my life upside down. I called the doctor yesterday after he had a week to look thru all of my tests and he told the nurse to tell me that he's going out of town for two weeks and he can't really tell me anything right now as hes waiting for another report and for me to come and see him then.

I feel like just walking away from all of this and hope for the best. I'm feeling a bit stronger everyday.

I really don't have many people to talk to about this so I do appreciate you taking the time to write back. I don't think anyone else would have, so thank you again and have one of those really good days:))


SentenceDoing 10-14-2008 07:30 AM

Re: grandmal seizure?
I had a gran mal seizure once, and I DID NOT wet myself. Though I did bite my tongue and was sore for about a week after. I don't think having your mouth open or not defines a seizure. Also, having to sleep after a seizure is very common.

karbear023 10-14-2008 08:14 AM

Re: grandmal seizure?
Thank you for your insight and thoughtful response. That means alot.

If this doctor tells me it was not a seizure because of those reasons, I will probably seek a second opinion because I'm afraid of this happening again.

I guess I can't get past the doctor in the e.r. writing that I was having simple complex seizures in the e.r. after the seizure at home and the changes on the eeg that according to them, look liked general seizure activity.

These doctors sometimes feel so uncaring and that makes the whole thing more difficult to cope with.

It's good that we have one another so we don't feel so isolated.

Thank you again,

n8tivecenter 10-14-2008 08:25 AM

Re: grandmal seizure?
Hi There.
I understand your pain and frustration. And your more than welcome for responding.
We all need support at times. I believe that this is what the Creator had in mind when we were created.
As far as the Dr. being out--that is really sad. I don't understand how they can be so non-sympathetic. You are going to him with your life!
Are there any other Dr.'s that you can go to even if you have to travel?
Antyhing else, please let me know. I will always offer what I have to people who are/have been through what I have.
It's tough, but we are strong. :)

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