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24 with epilepsy, its really hard

Sun, 04/05/2015 - 19:31

19

Hey,

I've never done this before... but hopefully someone replies and feels the same way I do. I'm 24 and was diagnosed when I was 14. I used to kind of take my epilepsy like a joke (as if i didn't have it) I was in complete denial over it so I would not care too much about taking my medication everyday. As I was young I always wanted to go out and live my life like a normal teen. Drinking/smoking etc. The first time I had a seizure since I was diagnosed was when I was 19 after a really big night out. Even then I was in denial and blammed it on the night before's antics. I was completely imbarrassed as I had the seizure infront of my then boyfreind. I remember going home and just bawling my eyes out uncontrollably. I didn't have another seizure for a couple of years. This time I was flatting, me and a couple of my girlfriends decided to go out to breakfast after a night out and I was driving. A had a seizure whilst I was driving, luckily my freind in the front seat knew what was going on and pulled up the handbreak, and everything was good after that once again for a couple of years. But recently I have started having them once every 3-4 months. Ive learnt my lesson from previous seizures and really sorted out my health. But since then Ive been having them more and more. I've had my medication reviewed many times and I'm in the range. I always have them in the morning, especially after I havent slept well. But i barely had them when I was out partying all night. This is hard for me as I have worked really hard to turn myself around and start taking life seriously and it seems to be back firing in my face. It's making me really upset and I cry everytime after I have a seizure and I feel so sad for a week or so afterwards. I try and go to bed early and i do take care of myself, but it keeps happening. I'm so paranoid about having seizures that I don't leave my house if im not feeling right. But I'm not the type of person who likes to be isolated and withdrawn so its really hard.

Please tell me someone else feels the same way/ and or what they did to pull themselves out of feeling like this.

 

 
 

Comments

You aren't the only person

Submitted by just_joe on Mon, 2015-04-06 - 11:25
You aren't the only person that has feeling lke you have.When I was diagnosed there were no computers and no forums so you learned how to deal with them by living with them and finding out what is needed to be done along with helping others know what to do if they ever saw someone in a seizureEpilepsy is considered a handicap. But it is a handicap which can not be seen unless they actually see you in one. I too wanted to be just like my friends and did drink and smoke and went paces with them. When I was in my 20's some of us closed down the clubs and we did have a blast. You are not any different then the people you run arround with. Just use some common sense when doing things and you will be fine. If going out with your buddies then let the bartender you only want 1 drink that has alcohol. So when someone ordered a drink for me the bartendermixed the drink without alcohol. It looked like everybody elses . I've had my medication reviewed many times and I'm in the range.  By in range what do you mean?? As your body changes meds need to be increased or decreased and in some cases changed. Your body gets used to the medication so after a long period of time it does need some changing. I know I had to have my dosages changed 4 times in less then a year. If you have grown and or gained weight since the last dosage change it may need it. Have you told your neurologist about the seizures you have had since the last increase in your meds. If not then he thinks your meds are doing fine and unless he knows you are having more seizures and what type they are he will keep you on meds that aren't controlling your seizures like they should.In a meeting with any of my neurologists I had questions I asked. I generally had at least 1 for each question he asked me. By asking questions Doc knew I wanted the better control of the number of seizures I was having and the time in them lower. By asking questions we have reduced the number of seizures. Along with the time in those seizures. I can have a seizure while standing infront of you and you would know nothing about the seizure since they now lase a few seconds. So know you aren't the only person this has happened to. Just learn from it and sontrol your epilepsy and by all means don't let epilepsy control you. I hope this helps and yo uget your seizurs under control Joe

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Submitted by just_joe on Wed, 2015-04-08 - 18:03
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I'm 20 and I was diagnosed

Submitted by Misjoey101 on Sat, 2015-04-11 - 00:42
I'm 20 and I was diagnosed when I was 9 months old. I never got a drivers license. I never took epilepsy as a joke but when you are a kid, most of your friends do. I definitely want to live a normal life but my schedule revolves around the bus and I cannot drink either. In regard to large seizures and E.R. trips, 2014 was the worst year of my life. I know how you feel. I am currently in college. The only times I don't cry after a seizure is when they make a good excuse for something. Then I laugh. I'm in the E.R. "Good! I guess I don't have to take that Calculus final tomorrow!".  " I really didn't want to work that breakfast shift in the dish room!". The emotion usually doesn't last a week though. Shit happens. I never party all night because, like I said, my schedule revolves around the bus and where I live the bus doesn't run past 10pm on the weekdays or past 6 on the weekends.  

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