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Old 10-13-2008, 07:05 AM   #1
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Question Is this a grandmal generalized seizure?

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I am, female, 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. She thinks I stopped breathing. 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. My liver enzymes were elevated also.
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. They are saying metabolic encepholopathy. I had my gallbladder out at 19.
Has anyone ever heard of a seizure of this type? They ruled out cardiac.

 
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Old 10-13-2008, 11:37 AM   #2
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Re: Is this a grandmal generalized seizure?

Hello karbear...let's see....you had a seizure,but the dr.isn't sure what kind?Your post is a little hard to comprehend.

Definitely get another opinion And bring your EEG test results.That dr. doesn't seem to be too caring...drs. Never diagnos a patient without first reading the test results.

Your age puts you in a category for women in peri-menopause/menopause.When I first antered peri-menopause I had "spells" as my neuro called them.Upon having an EEG it showed I had bi-temporal slowing.....and then I was put on a migraine diet.I had aura's and also had seizure type episodes(flashing lights,muscle weakness)...I was awake during these episodes....no wetting myself ever...no closed mouth either.....

Seizures can be caused from several different things.You mentioned you had a migraine later...many people get severe pain after a seizure.

Are you taking any herbs or on any HRT?You have to be careful if you are,because hormones can effect your brainwave pattern...even if you aren't taking any.It would be a good idea to have a check up with a gynecologist if you haven't had one recently...just to see where you're at.

So are you still taking the keppra now or did the last dr. say it wasn't necessary?I know you must feel very upset and confused right now,but you'll at least know more what's going on if you take your EEG results to a different neurologist.

Well I'm not sure I've been much help here,but if there's anything else I can try and help you with I'd be glad to!

Take Care~Scout

 
Old 10-13-2008, 12:25 PM   #3
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Re: Is this a grandmal generalized seizure?

Quote:
Originally Posted by scout316 View Post
Hello karbear...let's see....you had a seizure,but the dr.isn't sure what kind?Your post is a little hard to comprehend.

Definitely get another opinion And bring your EEG test results.That dr. doesn't seem to be too caring...drs. Never diagnos a patient without first reading the test results.

Your age puts you in a category for women in peri-menopause/menopause.When I first antered peri-menopause I had "spells" as my neuro called them.Upon having an EEG it showed I had bi-temporal slowing.....and then I was put on a migraine diet.I had aura's and also had seizure type episodes(flashing lights,muscle weakness)...I was awake during these episodes....no wetting myself ever...no closed mouth either.....

Seizures can be caused from several different things.You mentioned you had a migraine later...many people get severe pain after a seizure.

Are you taking any herbs or on any HRT?You have to be careful if you are,because hormones can effect your brainwave pattern...even if you aren't taking any.It would be a good idea to have a check up with a gynecologist if you haven't had one recently...just to see where you're at.

So are you still taking the keppra now or did the last dr. say it wasn't necessary?I know you must feel very upset and confused right now,but you'll at least know more what's going on if you take your EEG results to a different neurologist.

Well I'm not sure I've been much help here,but if there's anything else I can try and help you with I'd be glad to!

Take Care~Scout
Hi,
Thank you for responding, I do appreciate it. I'm sorry about the confusion. I read my eeg results from the hospital and the doctor said there was no denying the rhythmical changes that looked like a grandmal seizure. I then went back in and they did a second one that showed difuse slowing of the brain waves.
I went to a nerologist last week to look at these results but he never got back to me. I agree, they are only interested when you are sitting there. I also agree that he shouldn't jump to conclusions before seeing the test. oh well. thats life, at least I'm still here.
I started menopause at 47 and quit having symptoms a year ago but since this "seizure", have started having alot of sweating again. I am due to see my doctor so I will make an appointment for that.
It's hard because I am not allowed to drive until he releases me.
They took me off the keppra, and my other meds as thinking it might have been metabolic.
I do thank you for taking time out of your day for me. It is deeply appreciated.
karbear

 
Old 10-13-2008, 01:06 PM   #4
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Re: Is this a grandmal generalized seizure?

Hi again....now I'm more clear on what you're saying.You know I have the "slowing" also...after reading what you just posted I really do think it's related to menopause!

My neuro suggested I stay away from the trigger foods>anything with MSG in it,nuts(inc. peanut butter),whole milk,cheeses,nitrates(lunch meats,hot dogs),yeast in cakes,crackers(bread is okay),chocolate,fish,beans and citrus fruits.I know that's a long list,but it does help with the brain wave slowing.

Do you feel kind of "funny" when loud noises stop(like when you're watching tv and the music stops,etc.?)...I do and the neuro said I have "sensory disturbance"(part of the symptoms of the brain wave slowing...UGH!!!!).

Yes I had the abnormal slowing for about 3 years then it stopped for 3 and then came back...when I was feeling better my EEGs would come out normal during that time.So funny,huh?

Well when my periods stopped I just had a laundry list of neurological symptoms(lucky me!).I also have a B12 low-borderline deficiency and when it's really low I have had seizures...so you just might want to have that checked out!Ask for the methylmalonic acid test with the B12 level test,because it is a better way to diagnos low B12 even when it sys you are in range(normal range is 200-1100 in the US)...mine was 222...I had severe symptoms(not fun at all!).

Thru all of this I have noticed quite a lot of my symptoms seem to be centered on certain things like hot flashes,night sweats...it's all related somehow.....it's very frustrating...just do the best you can each day.

Hope you feel better(and get to drive again soon!)...I'm not able to drive anymore(my hubby gets to be my chauffer....hahaha).

Oh also do you ever feel like you get really weak when having the hot flashes?My neuro ordered me an EEG again,because I get severe muscle weakness whenhaving a hot flash and he saud my hamstrings are very tight.Anyways...it seems like the fluctuations in hormones triggers so many symptoms.I wish you well...post back Anytime...there's a bunch of really caring,nice people on this board.

Nice to meet you!

Scout~

 
Old 10-14-2008, 05:49 AM   #5
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Re: Is this a grandmal generalized seizure?

Quote:
Originally Posted by scout316 View Post
Hi again....now I'm more clear on what you're saying.You know I have the "slowing" also...after reading what you just posted I really do think it's related to menopause!

My neuro suggested I stay away from the trigger foods>anything with MSG in it,nuts(inc. peanut butter),whole milk,cheeses,nitrates(lunch meats,hot dogs),yeast in cakes,crackers(bread is okay),chocolate,fish,beans and citrus fruits.I know that's a long list,but it does help with the brain wave slowing.

Do you feel kind of "funny" when loud noises stop(like when you're watching tv and the music stops,etc.?)...I do and the neuro said I have "sensory disturbance"(part of the symptoms of the brain wave slowing...UGH!!!!).

Yes I had the abnormal slowing for about 3 years then it stopped for 3 and then came back...when I was feeling better my EEGs would come out normal during that time.So funny,huh?

Well when my periods stopped I just had a laundry list of neurological symptoms(lucky me!).I also have a B12 low-borderline deficiency and when it's really low I have had seizures...so you just might want to have that checked out!Ask for the methylmalonic acid test with the B12 level test,because it is a better way to diagnos low B12 even when it sys you are in range(normal range is 200-1100 in the US)...mine was 222...I had severe symptoms(not fun at all!).

Thru all of this I have noticed quite a lot of my symptoms seem to be centered on certain things like hot flashes,night sweats...it's all related somehow.....it's very frustrating...just do the best you can each day.

Hope you feel better(and get to drive again soon!)...I'm not able to drive anymore(my hubby gets to be my chauffer....hahaha).

Oh also do you ever feel like you get really weak when having the hot flashes?My neuro ordered me an EEG again,because I get severe muscle weakness whenhaving a hot flash and he saud my hamstrings are very tight.Anyways...it seems like the fluctuations in hormones triggers so many symptoms.I wish you well...post back Anytime...there's a bunch of really caring,nice people on this board.

Nice to meet you!

Scout~
Hi,
Thank you for your information and time. They are very valuable.

I really haven't had any hot flashes for the last 1.5 years as it had seemed to be getting so much better until I had this "seizure". What ever happened seems to have triggered this or there is something else wrong. My blood tests at the time of this showed very low phosphorous, borderline anemia, high potassium levels and according to them, I was having partial complex seizures in the er. On my first eeg in the e.r. showed "generalized seizure activity". I went back in the hosp one day later with a severe headache and vomiting and that is when the second eeg showed diffuse slowing.
They told me to go to a neuro when I got out of the hosp. I took all of my papers to him a week ago and called him yesterday. He told the nurse to tell me hes waiting on another report and is going out of town for two weeks so he will see me then.

These doctors are a pain..........I'm ready to walk away at this point and ignore this whole thing.

I need to refocus......... Thank you again, you have been a big help to me.

Karbear

 
Old 10-14-2008, 11:44 PM   #6
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Re: Is this a grandmal generalized seizure?

Hi karbear....I hear ya!Those neurologists are a strange bunch....like theyreally care about you so they go on a vacation...it figures!Sorry you had that happen to you.I know how it feels to have to wait,but just try to stay calm.

Well if you have slowing I know how that feels.I told you about those diet restrictions and it does help a lot.Dr. told me it works for many people.He also said slowing does not always mean seizures...it can be migraine-related and if your EEG was not showing spikes then there's no seizure activity.Sometimes the dr. will order a 24 hour EEG if it's not clear you have a seizure disorder.

I'm so sorry you are going thru this.When I had bi-temporal slowing I felt frightened and sometimes I would just want to sleep or just lie there with my eyes shut,because I didn't know when I was going to have an aura which would progress to the vascular thing(flashing lights,wavy lines....)it was awful,but I just learned to live with it.The first neuro I saw suggested Tegretol,but the second neuro said he wouldn't advise it,because it wasn't clear what kind of seizure it was...crazy if you ask me.....so then years later I saw another neuro who said those were "focal seizures"...whatever...seems like drs. couldn't agree on what was going on with my head.I don't mean to confuse you,but I hope you get some better answers than I did.

My GP said it sounds like menopausal epilepsy....which does make sense to me.Later I researched it and found that there was this neurologist in New York that was treating this kind of menopausal epilepsy with natural progesterone.I found that interesting,but with all the risks of cancer from it I really don't want to take any HRT.....

If you are borderline low anemic then that needs to be checked out.I'd ask my Gp to test my B12 level And folic acid and MMA levels....actually I'd Demand it.....did they check your ferritin?That is essential too....you can be B12 low but still in normal range and be deficient...that's why the other tests are very important also.I noticed that when I'm low on B12 that's when I get the slowing...

You'd think that with all the advances in medicine they'd be able to help figure out this kind of thing,but so far I haven't gotten any firm answers either.Maybe you will have better rsults when yousee the neuro...hope so.

Anyways I'm here if you need someone to talk to about it...take care~Scout

 
Old 10-15-2008, 02:31 PM   #7
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Re: Is this a grandmal generalized seizure?

Oh how frustrating and scary for you! I had a secondarily generalized tonic-clonic seizure at 42--in the presence of my primary care physician! I went to see him because I was feeling horrible...insomnia for five months, my gyno had switched my HRT to Premarin to break up some cysts on an ovary...terrible nausea and these weird arm jerking sensations.

Come to find out, I had been having simple partial and complex partial seizures for up to two years prior to the "grand mal" seizure. When you have a 'grand mal,' or tonic-clonic, normally your eyes remain open most of the time and you don't necessarily wet yourself. I didn't, as I had to give a urine sample prior to the big event! My seizure started out with my left arm jerking, I was confused, but my doctor knew exactly what was about to happen.

It lasted 90 seconds. I remember nothing and was unconscious for about 10 mins. after that. I was "out of it" in the ER for about 3 hrs. after that.

I didn't have an EEG and MRI until almost 3 weeks later (hicksville) and my EEG didn't show slowing, but just the opposite....lots of spikes in the right temporal lobe.

A neurologist can't come to the conclusion that you do or do not have a seizure disorder based upon one test--a thorough history needs to be taken. For example; I had non-febrile seizures as an infant and took phenobarbatol until I was two but never had another seizure (that I knew of) until a couple of years before "the big one." Like I said, I didn't even realize I was having seizures until my doctor took a complete history.

You need to find a neurologist, or even better, an epileptologist, who will take the time to really listen to you and talk about every symptom you've been experiencing. It's no fun to find out you have Epilepsy at my age (42) but with medication, there's hope that you'll never have to experience what you went through again!

Best wishes to you!

 
Old 10-16-2008, 07:09 AM   #8
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Post Re: Is this a grandmal generalized seizure?

Quote:
Originally Posted by dogmom View Post
Oh how frustrating and scary for you! I had a secondarily generalized tonic-clonic seizure at 42--in the presence of my primary care physician! I went to see him because I was feeling horrible...insomnia for five months, my gyno had switched my HRT to Premarin to break up some cysts on an ovary...terrible nausea and these weird arm jerking sensations.

Come to find out, I had been having simple partial and complex partial seizures for up to two years prior to the "grand mal" seizure. When you have a 'grand mal,' or tonic-clonic, normally your eyes remain open most of the time and you don't necessarily wet yourself. I didn't, as I had to give a urine sample prior to the big event! My seizure started out with my left arm jerking, I was confused, but my doctor knew exactly what was about to happen.

It lasted 90 seconds. I remember nothing and was unconscious for about 10 mins. after that. I was "out of it" in the ER for about 3 hrs. after that.

I didn't have an EEG and MRI until almost 3 weeks later (hicksville) and my EEG didn't show slowing, but just the opposite....lots of spikes in the right temporal lobe.

A neurologist can't come to the conclusion that you do or do not have a seizure disorder based upon one test--a thorough history needs to be taken. For example; I had non-febrile seizures as an infant and took phenobarbatol until I was two but never had another seizure (that I knew of) until a couple of years before "the big one." Like I said, I didn't even realize I was having seizures until my doctor took a complete history.

You need to find a neurologist, or even better, an epileptologist, who will take the time to really listen to you and talk about every symptom you've been experiencing. It's no fun to find out you have Epilepsy at my age (42) but with medication, there's hope that you'll never have to experience what you went through again!

Best wishes to you!
Your reply was very informative, lots to ponder on. I went to a doctor when I was in my early 20's and he did an eeg and told me that it was showing seizure activity,,, lots of spiking. He asked me if I had petit mal when I was younger. I didn't know for sure. I never went back.
Depending on what this doctor tells me "when he returns",,, I will probably get a second opinion from a epileptologist.
I was just reading about "post ictal slowing" after a tonic clonic seizure which would account for the slowness on the second eeg. The first eeg a couple hours after the seizure showed rhythmical spiking.
I am not on any meds right now and feeling pretty good except anixiety in a crowd and that I blame on the fear that I will have another one in public. I'm not allowed to drive but I'm really very scared to go in a store alone.

Thank you

 
Old 10-16-2008, 08:31 AM   #9
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Re: Is this a grandmal generalized seizure?

Sounds like docs have been dropping the ball with you for quite some time! eek! If that doc saw seizure activity in your 20s, further investigation was needed and probably medication. Altho' you did say you never returned. Naughty girl!

As for this current doctor, I can't beleive he went on vacation w/o prescribing meds for you. It's kind of funny in a way, I had a similar thing happen after my tonic clonic. The hospital set me up with Dilantin, I met with the neurologist three days later (don't remember any of it) and he gave me a script for Lamictal to take on top of the Dilantin. Well, I couldn't get in for the EEG and MRI for another two - three weeks, even though the ER doctor told my husband to make sure I had it done within 24 hours after I was discharged.

Like I said, hicksville here (I live in a lake town) my husband called the hospital the morning after my brain exploded and they were "too busy" to fit me in for the tests! Anyway, I finally had the EEG and MRI and was mad because my neuro. went on vacation so I couldn't get the results! Out of nowhere I have this huge seizure and then had to wait over a month to get the results as to why this happened to me. I was so angry, I cancelled my appt. with him and called Duke-a Level 4 Epilepsy Center about an hour away. Couldn't get an appt. for three months. Then, out of the blue, the local "vacation man" neuro calls me and says, "I need to see you right away, your tests were abnormal." grrrrrrrr.

Now it was suddenly convenient for him. So when he explained to my husband and I about the spikes and the fact that the MRI showed that at some point I had a small stroke, he said, "Let's up your Dilantin. We need to be more aggressive." I had run out of Dilantin weeks before! The ER doc had only written out a weeks' worth! This dummy didn't realize that? He was all, "Uh oh." And I had to play catch-up on the Dilantin that day by taking about 8 of them.

My point is; (long story short! I know, too late!) these people aren't Gods...they make mistakes. Most definately get a second opinion. I went to this local clown for exactly one year and he mis-medicated me to the point where I don't even remember 2006. It's a blur.

Now I see a wonderful Epileptologist at that great Level 4 Epilepsy Ctr. in Durham called Duke Medical Center! It'll be two years in November and I couldn't be happier with my trustworthy doc.

I hope you find the same in someone.

 
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