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Old 05-03-2002, 09:27 AM   #1
nicola76
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Unhappy Need Advice/Support

Hello all!

First of all I'll give everybody a bit of my history. When I was nearly a year old I spent 2 weeks in intensive care having seizures nearly everyday. The doctors could find nothing wrong with me...as in they had no idea what was causing the seizures. The seizures stopped and I was released from the hospital. I had a fairly uneventful childhood (no seizures).

When I was 18 years old I was sitting with a group of friends in class (was second to last day of school) when I had a seizure. It only lasted a couple seconds and when I came around my friends said I was dazed. A couple friends helped me up to get down to the office to call my mom when I had another one and I actually went down to the ground. My mom picked me up and took me to the hospital and after a barrage of testing I was diagnosed with a "seizure disorder". I had a neurologist who put me on Dilantin after an EEG showed "a very slight abnormality". I was on Dilantin for nearly a year and then allowed to come off of it.

I'm now 25 years old and have started experiencing seizure activity again. I went to see my doc last week and he told me to keep a journal of everything that happens to me until he sees me again next week. He's certain that I'll be needing to go back on medication again.

This is all very depressing to me. Since I'm having "petit mal" seizures again, does this mean I could have a "grand mal" at anytime?

I guess I'm just looking for some support is all. Thanks for listening everybody. Take care!

Nicola

 
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Old 05-03-2002, 10:20 AM   #2
Kokopelli
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Hi Nicola,

Sorry to hear you are having seizures again hon but if your doc wants to put you on meds by all means do it sounds like they are able to control you to a pretty good level. I have both petit-mals and grand-mals as well as other types that are pretty bizzarre. I am not controlled completely I still have the seizures (grandmals and petit mal both) I also had my first grand-mal like you did in class pretty weird huh.. but don't get too depressed over this please.. just get it under control and go on with your life hon I think you can still have a very normal life pretty much seizure free with the sounds of your history on it.


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Koko
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Old 05-03-2002, 10:52 AM   #3
Ksavage
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Here we are again girls! Do we have our own little private support group going here or what? LOL

Hang in there Nicola! I know it sucks & I am fairly new at all this seizure stuff so I am affraind I can not be of much help to you in the information department! What are your petite-mals like? I have those as well as gran-mals. I started all of this back in November of 2001 so I am still learning my self! I do know that I do not like my Neurologists though so I am in search of a new one.
Koko, how long have you had seizures? Could you help Nicola & myself out here? I have never met anyone with a seizure disorder & I have never seen any type of seizure activity myself & am curious as to what all the differents types of seizures there are & what happens when you have them. I have heard alot of different types of seizures but when anyone ever mentions them I do not know what exactly they are talking about. I do know when I have a petite it seems as though I am stareing off into space is all (what hubby says anyway) & when I come too I get a bit scared until I can realize where I am. & then ofcourse the gran-mals & we all know what those are. I wish I could think of the others but at the moment my mind has drawn a blank. Thanks for any info you have for us!
Talk to you girls soon!
Kim

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Old 05-03-2002, 11:44 AM   #4
Kokopelli
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Hi Ksavage and nicola,

I am 38 years old and have had seizures (grand-mals) since I was 14 later on I started having the petit-mals.. I have had several neuro's Ksavage and if your not happy you definantly need to find one you like and I am stressing this to you ksavage because I know you and hubby are wanting a family and you need to be stress free and not be worrying. Theres some neat places you two can frequent on the internet look up the epilepsy foundation this place can teach you about the seizures you have and how many different types there are. Alot of us have several types and are unaware of them unfortunantly. I know one thing never forget to tell an employer about your seizure disorders because people who are unaware of your problem can seriously hurt you. They can think it's something else. I never drink nor do I do any drugs or take anything without talking to my doctor first. it's better to be safe then sorry. I tried Depakote a few years back and I ended up in the hospital as I was elergic (spelling) to it. So we need to be cautious no matter what. Hope this helps a little for you guys


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Koko

[This message has been edited by Kokopelli (edited 05-03-2002).]
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Old 05-03-2002, 05:46 PM   #5
nicola76
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Hey all!

Thanks so much for your posts. I feel better already...like I'm not all alone in this. I still have a couple questions (will probably have more when I come back from the doc next week! *lol*).

Do I need to find a neurologist or can I stick with my regular doc?

When you have petit-mals does that mean that you'll definately have a grand-mal in the future?

I'll leave for now and check back in tomorrow. Its getting late. Thanks again so much!

Nic

 
Old 05-03-2002, 07:02 PM   #6
Kokopelli
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Hi Nicole,

having petit-mals does not mean you will have gran-mals in the future. You could end up having petit all
your life without another type of seizure. But it's not so in alot of peoples cases unfortunantly like with me I had a gran-mal and then started having petit mals about 6 months later.. as well as other types of bizzarre seizures like ones where I could not move but was awake and I had alot of pain with those as well as dizziness and vomiting.. those were awfull my first one of those I was on vacation in hawaii with no neuro I was so sick. as for finding a neurologist instead of your regular doctor I would recommend a neuro however if your doctor understands and has had patients with seizure disorder he would be fine I have no choice right now to use a family doctor as I am in a small town with 2 doctors LOL but both have extensive medical background and have studied seizure disorders .. with them its kind of important since they are the only two doctors here. It's up to you only you can make the final decision and only you know if you feel comfortable good luck nicole Hugs

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Koko
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Old 05-04-2002, 03:59 AM   #7
nicola76
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Thanks a lot Koko. I'm suppose to call my doc on Monday morning and get an appoinment for later in the week. He wants to see my journal and then go from there.

I'll keep you posted! Thanks again everybody!

http://www.healthboards.com/ubb/heart.gif Nic

 
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