Scared and Confused...

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Ktp

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Hi Everyone,
I joined this site back in July after being told that I had an abnormal EEG. Someone told me that meant epilepsy. I had not heard those words from my doctor and was confused. To make a long story short, my doctor has confirmed that it is epilepsy and simple complex seizures but he is very concerned that I will have a grand mal if I do not get on medication. I have had weird neurological things going on for the last 6 yeas. I am trying to figure out what symptoms can be from epilepsy. I feel fuzzy a lot of the time and if I am upright for too long then my vision is effect. My balance is crappy 24/7. I just don't know if I am feeling anything that is epilepsy related or what I feel all the time is related to my other junk. I am worried about the medication for it but now I am terrified of having a grand mal. Any input is very welcome. Thanks!
 
Hi Ktp --

Unless you become unaware during seizing, then you are probably having simple partial seizures (rather than complex partials). Simple partials can take almost any form of sensory distortion, including dizziness and vertigo, so it can tough to distinguish them from other health issues.Has your neurologist been able to provide any guidance on this? Did he say the EEG results were clear-cut or were they open to interpretation?

Do you keep a seizure/symptom diary? It might help to see if there are any connections between your symptoms and any other possible triggers (things like fatigue or low blood pressure). It will also help track if your symptoms are progressing in frequency, duration, or kind. If that seems to be the case, then it might be worth pursuing treatment of some sort -- not only to get relief from your symptoms, but to prevent them from escalating.

There's no way to predict how you will react to any given medication. I understand your reluctance to go that route, especially given that for some people the meds cause fuzziness and balance issues. Best scenario -- you try the meds and they help. In the worst case, you try the meds, they don't help or have problematic side effects, and you taper off them.
 
You are right...He did say simple partial seizures. I can't keep anything straight. To be honest, I kind of decided to do nothing based on the fact that I feel weird most of the time due to my symptoms...but I always thought that was because of my other issues. After meeting with my doctor again, he is adamant that I get on medication. He told me that I should not be driving with my kids...that got my attention.

I will try keeping a diary. One of my problems is that I have an orthostatic issue so when I am standing my blood pressure goes really high...I thought that was causing all of the weird head feelings. I guess maybe by putting everything in writing it is possible that something will jump out at me.

You are right about the medication. I am just such a baby about medications. I know it is probably the right thing to do.

Thanks for you help.
 
Ktp said:
After meeting with my doctor again, he is adamant that I get on medication. He told me that I should not be driving with my kids...that got my attention.


You are right about the medication. I am just such a baby about medications. I know it is probably the right thing to do.

Thanks for you help.
Click to expand...

Please don't be a baby about medications, especially when it comes to driving and Epilepsy. Think about your babies in the car with you if you have a seizure while driving! Even a SP or CP seizure can be dangerous while driving! Been there, done that! Fortunately, only hit a tree and no one was injured.
 
Thanks, Cint. I know you are right. So glad you were not injured. I am just not used to thinking this way.
 
Hi,

I can understand your feelings -- it is an adjustment thinking about E. when/if another seizures will hit. The Meds. which one is right for you. I'm sd to sy to only way to find the right one is trial and error.

I have been on about all the meds. out there I'm now on Dilantin and Clonazepam. I have the same type of E. as you.
 
He is suggesting Keppra. Jyearta....what type of symptoms do you have, if I can ask?
 
Ktp said:
He is suggesting Keppra. Jyearta....what type of symptoms do you have, if I can ask?
Click to expand...

My symptoms sound diff. than your.

I will have déjà uv 1st. - this lets me know to get to a safe place.

as seizures starts--I will stop whatever I'm doing and stare straight ahead, I will know where I'm at, who is talking-I can not respond in any way.
I will smack my lips, have lobster claw like movement with my hands.

My seiz. have gotten so much better.

How the people I'm around even my husband doesn't know I had one.
 
I'm 60, my seizures have changed over the years.

I mostly have a seizure now when a trigger comes my way.
Fatigue, stress, lack of sleep, illness, antiob. even over the counter vitamins.


I have my vitamins compounded.
 
Thanks for sharing. It is great that you have improved. That is part of my frustration. I am just not sure what my symptoms are because I feel weird most of the time.
 
Have you tried talking to your Neru. about the concerns you have?

He might can make it more clear for you.

I will tell you this, I have had E. all my life, wasn't diag. until I was 18. I did have a gran Mal the night before my husband got me to a Dr.
That was the 1st. and only time I had a gran Mal.

My seiz. had increase in intended, the length they lasted, And they came a lot more often.

Please take care of yourself.
 
My doctor has been really great and patient with me. He just can't tell me what symptoms are related to the E and what is not. It just came out of nowhere so I think I am still kind of shocked. I think one gran mal would be more then enough!
 
Ktp said:
My doctor has been really great and patient with me. He just can't tell me what symptoms are related to the E and what is not. It just came out of nowhere so I think I am still kind of shocked. I think one gran mal would be more then enough!
Click to expand...

I agree, what more could they possible need.

I know that EEG and MRI come back normal for the most part of those of is with E.


don't let up.. Keep at it until you get the answers.

I talked to my family Pharm., who, helped me a lot. I live in a sm.,town cann't get this type of help in these big store pharm.
 
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