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Old 08-17-2008, 06:58 AM   #1
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Do you know when you're having a seizure?

I know someone who says they have lupus (I say "says" because the majority of tests they've had have come back negative). I'm trying to be supportive, but it's hard to believe some of the things they say. This person has said they have had seizures and mild strokes, yet nothing has every shown up on a CT, MRI or EEG. They also act like they know they're having the seizure (after it's over, they turn to you and say, wow, I just had a seizure). Do you actually know when you're having one? I don't know exactly what kind they are having, but I thought any kind affected your brain so that you are not aware.

If they actually are having them, wouldn't they show up on any of these brain tests?

 
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Old 08-18-2008, 02:50 PM   #2
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Re: Do you know when you're having a seizure?

Quote:
Originally Posted by tigger67 View Post
I know someone who says they have lupus (I say "says" because the majority of tests they've had have come back negative). I'm trying to be supportive, but it's hard to believe some of the things they say. This person has said they have had seizures and mild strokes, yet nothing has every shown up on a CT, MRI or EEG. They also act like they know they're having the seizure (after it's over, they turn to you and say, wow, I just had a seizure). Do you actually know when you're having one? I don't know exactly what kind they are having, but I thought any kind affected your brain so that you are not aware.

If they actually are having them, wouldn't they show up on any of these brain tests?
Hi there tigger67, I have never heard of such a thing. I agree with u that if your having a seizure your not really aware that your having one. And to say "I just had a seizure", that sounds not believeable: It sounds to me like this person is in need of attention.

Take care

 
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Old 08-18-2008, 03:58 PM   #3
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Re: Do you know when you're having a seizure?

Hey Tigger -
I can certainly understand your concern - however, there are what are called "auras" which can occur right before or right after a seizure. You are definatley aware of an aura, and maybe when this person feels it, they are assuming they just had a seizure.
There are many many types of seizures, and very few will cause you to be unconcious. Also, seizures can manifest in many differrent ways -such as involuntary muscle jerks, or a split second of unawareness (complex partial and petit mal). So, I think if you have a history of a certain type of seizure, and you know how you feel right after one, you could say that, yes, you would know. But to actually be fully aware of what is happening WHILE its happening is not likely.
It is very very rare, however, for a seizure to not show SOME abnormality on an EEG. They can change from normal to abnormal, but they will at least at some point show an abnormal signal on one.
For me personally, I can always feel a seizure coming on, and defiantely know when Ive just had one. My body feels as if Ive ran a road race (from the severe contraction of muscles) and Im really tired. This is the way most people feel after a seizure - no matter what kind.
Its too bad this person feels the need to have something wrong with her...Im sure its frustrating for you...
Good luck and I hope this has helped..
Lauri

 
Old 08-19-2008, 04:41 AM   #4
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Re: Do you know when you're having a seizure?

Tigger, when you say that the "majority" of your friend's tests are negative, do you mean that *some* tests came back positive? Do you kinow WHICH tests?

I bet numerous conditions can cause small seizures---or symptoms that could be mistaken for small seizures. In the last year before I was finally Dx'ed, I had unnerving tingling sensations that started in my arms & seemed to travel up to my head. Of everything I'd had over many years, this was the thing that drove me to find better doctors. (Looking back, possibly anemia caused it---but I was truly clueless at the time.)

I'm plenty old enough to have seen many instances of wrong & missed diagnoses; sadly, I bet I misjudged some people as a result. But if nothing really is going on medically speaking?---well, I hope your friend can go out & live her life more fully. Bye, Vee

 
Old 08-19-2008, 02:54 PM   #5
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Re: Do you know when you're having a seizure?

I don't know the person very well, I'm hearing about this thru someone else, but now suddenly they are saying the EEG did show seizures some years ago. They're saying they have simple partial seizures so they'd be fully awake and aware during them. Does anyone know anything about this?

 
Old 08-20-2008, 12:19 PM   #6
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Re: Do you know when you're having a seizure?

Hi tigger,

there is NO WAY you know when you are having a seizure. I had epilepsy when I was younger (you can grow out of it once you hit puberty, which I did). I never had a shaking seizure (grand mal seizures) but I had about 150 (staring) seizures a day. I had that for about 3 years before they figured out what was wrong and I do not even remember one of them. I saw that someone wrote about auras and yes that is true, I kind of knew when I was going to have one but I would never actually know if it happened. Either my parents or someone would have to tell me after. Also, I had many tests done and yes the seizures do show up. When they are seeing if you are having seizures they actually hook you up to all these cords which attach to your head and then to a machine. It's called a Electroencephalogram (EEG). They actually induce you into a seizure and can determine the cause and see what is going wrong by looking at your brain waves. Your friend should go see a specialist and if they don't find anything with the appropriate tests then she's okay. But to clearly answer your question, NO you do not know when you are having a seizure.

Hope this helps

 
Old 08-24-2008, 05:21 PM   #7
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Re: Do you know when you're having a seizure?

Quote:
Originally Posted by jane517 View Post
Hi tigger,

there is NO WAY you know when you are having a seizure. I had epilepsy when I was younger (you can grow out of it once you hit puberty, which I did). I never had a shaking seizure (grand mal seizures) but I had about 150 (staring) seizures a day. I had that for about 3 years before they figured out what was wrong and I do not even remember one of them. I saw that someone wrote about auras and yes that is true, I kind of knew when I was going to have one but I would never actually know if it happened. Either my parents or someone would have to tell me after. Also, I had many tests done and yes the seizures do show up. When they are seeing if you are having seizures they actually hook you up to all these cords which attach to your head and then to a machine. It's called a Electroencephalogram (EEG). They actually induce you into a seizure and can determine the cause and see what is going wrong by looking at your brain waves. Your friend should go see a specialist and if they don't find anything with the appropriate tests then she's okay. But to clearly answer your question, NO you do not know when you are having a seizure.

Hope this helps
This is a very interesting subject. I have been told for many years that I have a seizure disorder. My EEG's have always been abnormal so something is showing up, yet as far as I know I have never had a out and out seizure as far as a grand mal or even a petit mal seizure. HOWEVER, I have many episodes where I have the very strangest feelings all over my body and it is very scary to me. I don't know what causes it but the best way I can describe it is like having a sensory type seizure or episode of some kind. i ask my doctor if it was possible to have a sensory seizure and be fully awake and aware of it and he said "yes"....so that's all i can say about it. I do know that it is a very scary thing and I hope nobody ever experiences it, but then again, Lupus also causes strange feelings too so i don't know what I am having when i have this but I don't like it at all.

Connie

 
Old 08-25-2008, 11:52 AM   #8
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Re: Do you know when you're having a seizure?

Hi c57s53,

I'm not sure I can relate to what you're talking about. I don't think I have ever had a sensory seizure however I did know when a seizure was about to happen. Sometimes all it was, was a tick or like I said before staring. Right before I had one I would have a really strange/tingly feeling from my shoulders up. I'm not sure what exactly you have been experiencing but I actually looked it up and here is what I found:

Sensory seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

Does any of this apply to you?

Best of luck..

 
Old 08-25-2008, 08:28 PM   #9
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c57s53 HB User
Re: Do you know when you're having a seizure?

Hi Jane517,
Actually some of what you found does apply to me, but what I normally get is very strange. I will attempt to describe it but honestly it is very weird. I get a strange feeling of like ice water running through my veins and it is almost like my brain is coming completely unwired.......I get very emotional and have tingling all over upper body. It doesn't last long, seconds only, but when I get this way it seems like it lasts forever. I just hate it because the feelings I get scare me because I don't know what is happening or how long it will last.

Connie

 
Old 09-30-2010, 03:44 AM   #10
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claire27 HB User
Re: Do you know when you're having a seizure?

i had lots of test to see what was causing my fits and in the end i had a ECG which comfirmd i had it ! claire

 
Old 09-30-2010, 07:52 AM   #11
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Re: Do you know when you're having a seizure?

I do not have a seizure disorder but I do know there are many different types. Grand Mal, petit Mal, psychomotor......Many people who have Grand Mals do not know they had them and become incontinent, wake up with a terrible headache and can be sleepy for hours. I used to take care of a young adult with Severe Autism and some Cerebal Palsy and he would take off running or do repetitive movement but he was alert, his doctor said it was psychomotor seizures.....

Maybe your friend thinks she is having a seizure, many people do have a warning feeling or aura... they can be one side seizures and sensory seizures

Since I started with this Lupus issue I keep smelling this terrible smell. I will be somewhere and I can smell it for about 4 breaths and then it is gone. : (
Cannot stand it. I wondered if it was some kind of weird event I was having.

Wishing the best to all that have them. It must be very scary at times.

Interesting thread........Oleander

 
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