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Old 01-24-2003, 10:18 AM   #1
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Kaitie HB User
Post I went to the doctor - I'm so crushed....

Hi - I've posted on again off again type things for a while - so a lot of you probably won't recognize me.

Basically I had epilepsy (grand-mal) since I was eight - then a couple years later, my neuro ended treatment to see if I'd outgrown it. Evidently I had. Then when I was in grade 9, like 1997, I started having what I now know as petit-mal seizures.

I'd been hiding these for 6 years. Everyone noticed 'someting' but I just said - Oh, I'm day dreaming or whatever....sorry.

Yesterday I went to my family doctor - I brought a friend with me for support - also so that she can explain what I 'do'. My doctor read some of my old charts and then decided that it sounded a heck of a lot like petit-mal seizures.

Then he jumped into appointments with neurologists and then an appointment for an EEG - I know what all this means but my head was just spinning. I was starting to cry.

Then he said that I can't drive, can't swim on my own, can't ride a bike on my own (ect ect ect).

I find out on monday when my two appointments are.

I feel sick. I haven't kept any food down all day or anything.

In a way - I've got the amazing feeling of relief because I've been hiding this so long (I'm now 20) and in a way - I feel so incredibly sick....

All in all - I'm TERRIFIED.

I just need to talk to you guys because well, you know this best - I was so young before, none of this meant anything to me - I hadn't learned about FEAR. Now I'm shaking in my boots.

Pray for me...
Kaitie

 
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Old 01-24-2003, 10:50 AM   #2
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shirlygirly HB User
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hi kaitie,

i'm not very familiar with petit mal! i have complex partial. Yes you sound very scared. Don't be let them do whats best for you, your health is more important than anything....so go get sorted out!!
Don't hide anything its not worth it.
I was told don't do this don't do that, i do the absolute opposite, bearing in mind so much so, i know what my limits are. If we were to stick by the rules so stearnly we wouldn't have a life it would be so boring. i was told swimming i could go myself but you must tell the lifeguard, so they can keep and eye on you, driving well thats another thing, i had to give up last may...hopefully i'll get it back this may.....riding a bike well the same as a car i think, better with someone their, but i usually go bike riding myself in the summer. not that it really done much good.i'm still not much thinner..i'm sure alot of people on this board will help you out with their experiences and keep you in a positive mind..do not think negative thats the worst thing you could do...it doesn't seem all that dim!! 23 years of having i should know! one step at a time...all the best
shirley.x.
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shirley

 
Old 01-24-2003, 10:51 AM   #3
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hi kaitie,

i'm not very familiar with petit mal! i have complex partial. Yes you sound very scared. Don't be let them do whats best for you, your health is more important than anything....so go get sorted out!!
Don't hide anything its not worth it.
I was told don't do this don't do that, i do the absolute opposite, bearing in mind so much so, i know what my limits are. If we were to stick by the rules so stearnly we wouldn't have a life it would be so boring. i was told swimming i could go myself but you must tell the lifeguard, so they can keep and eye on you, driving well thats another thing, i had to give up last may...hopefully i'll get it back this may.....riding a bike well the same as a car i think, better with someone their, but i usually go bike riding myself in the summer. not that it really done much good.i'm still not much thinner..i'm sure alot of people on this board will help you out with their experiences and keep you in a positive mind..do not think negative thats the worst thing you could do...it doesn't seem all that dim!! 23 years of having i should know! one step at a time...all the best
shirley.x.
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shirley

 
Old 01-24-2003, 02:35 PM   #4
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Kaitie HB User
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Hi - thank you for your reply. I know my health is way more important than driving ect ect....its just hard to sort stuff out in my head right now - I'm still so confused as to whether I wanted all this - or if I've made a HORRIBLE mistake...

What I want most of all is this nausious feeling to just go away.

(Petit mal seizures are the same as absence seizures....maybe you know them by that name???)

Kaitie

 
Old 01-24-2003, 08:06 PM   #5
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lazoo HB User
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Dear Katie - I am praying for you and completely understand your fear as I also feel that fear for my daughter (8 years old). She also had chronic abdominal pain. I'm sure these were caused by the repeated seizure activity. I have an old post entitled See If This Helps which describes what I fed her. Right after she was diagnosed and suffering severe nausea, I was feeding her once per hour. Just a little was all she could get down. Gradually her nausea diminished and her seizures cut from once a week to once a month. She no longer complains of the nausea. Don't have time to repeat the whole thing now, but please go back and find it and read it. Give it a try. Also, you might want to read many of the older posts and you will see that many of the wonderful people on here, like you, have had this condition most of their lives and have lived very normal lives. Its very encouraging to hear their stories. I will continue to pray for you as I do for all the others suffering. Best wishes!! lazoo

 
Old 01-27-2003, 09:54 PM   #6
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Sweetshay30 HB User
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Katie....I know how you are feeling girlfriend. I his my seizures for 5 years. Being joked about continuosely by friends and family. Thinking I was an airhead...always waving their hands in my face "saying WooHoo are you in there?" And I would just laugh with them cuz I didnt want people to think that I was nuts. I was also getting into trouble with my husband for forgetting to pay a bill or doing something that he had asked me to do....but my memory was shot. Well now I know...and now they know. Its scary to go through this but we are all in this together and we will all be here for you when you need to talk. Goodluck with your appts and keeep us informed!!
Shay

 
Old 01-29-2003, 04:02 PM   #7
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johnspaziano HB User
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Katie,

dont let it get you too down. I have gone through something similar. I I have always had epilepsy, but mine was alwasy pretty bad. I would go through good times and think that i was getting better. Just when i thought i was getting better, i would have a seizure. Then they would up my meds, this was always when i would feel like you do. I hated getting more meds. I felt like they chaged me, made me less of a person, like i was "on drugs" not medication. Finally i had an implant called VNS, its like a pacemaker, but not for your heart. It really helped with my seizures. Because of that i was able to cut back on a lot of my meds. I feel like i am a person again. I guess my point is, this is not the end of the world.... My doctor scared me a lot too. You will be able to get through this.. mine was a lot worse than yours sounds, and i have been able to really enjoy myself. However, if you ever feel stressed or angry, come to the board and vent... we are here to listen.

 
Old 01-29-2003, 09:12 PM   #8
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Location: Kalamazoo, MI, USA
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ms. bunny HB User
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My husband has Grand-mal seizures, and has had epilepsy since he was a kid. He takes Dilantin 2x a day, and hasn't had a seiure in a couple of years. once a year, the doctor gives him a check up, runs some tests, and renews his perscription. They took his driver's license away for a short while about 8 years ago, but he hasn't had any trouble with it since. Hopefully with the right medication, your life will be normal as well. Good luck!

 
Old 02-05-2003, 04:56 PM   #9
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4shar HB User
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Hi Kaitie,
New to this site but just wanted you to know that I have had epilepsy since I was 12. I am now 46, married, and have one great daughter. My seizures use to come right around that time of the month for me. Is this your case? They also said that I could or should not go bike riding, swimming, look at lights, mirrors, or even fire as the last three they thought I was hypnotising myself but would not say so. I also got my licence but just this past November I had a seizure while driving and hit the side of a house. They have now taken my licence for the 1yr. period but whether I get it back, I am not sure I want it. The possibility of hitting someone since this seizure came with no warning. It was great when I had it and I got it honestly. Kaitie just talk to your friends and you will get through it. When I first started working at A&P when I was 16 I mentioned having epilepsy to some cashiers and they said that "you don't look like you have it!" That is how people are they just do not know about it. What is a person suppose to look like???
take care and keep talking about it.
Sharon

 
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