Just some questions.

[akidwithjme]

Hey guys, I am new to the forum, ive been looking for the right one for a long time. There are a couple of things i wanted to ask some of the more experienced members. I have juvenile myoclonic epilepsy. i was diagnosed almost 5 years ago, and have still not fully coped. due to the fact it hit me in my teen years it hindered me from participating in a lot of things i wish i had got to do. It appears that my seizures are caused by some sort of sleep deprivation.

- what is the best medication available for this type of epilepsy? i have heard my type can be easily controlled.

- i have gone quite a while now without medication, as it is expensive and there is no cheap generic around. i have had trouble finding insurance because i have a "pre-existing condition". could anyone lead me in the right direction so that i can get medicated again and get well.

- i also have heard that i can grow out of it, i find the odds of this happening are extremely unlikely but just wanted to know if there is hope for this happening?

- is it truly possible to lead a normal life? i am truly afraid of making it out onto the job market once i am through with college, and having to get a job where i have to wake up early. this is my biggest issue, mornings are not my thing. it is very scary and i twitch constantly. i have almost become a hypersomniac, i sleep constantly to make sure i get enough sleep, but then am overly tired. any suggestions? how have you all gone about your daily lives? i am also terrified of driving a vehicle, not for my own sake but for the livelihood of everyone around me.


i appreciate the insight in advance. keep me informed, i plan on staying a while.

 

[epileric]

Welcome akidwithjme

Glad you could make it. Put your feet up & get comfortable. There's a lot of good information here & lots of people with lots of different experiences that you (& the rest of us) can gain from.

- what is the best medication available for this type of epilepsy? i have heard my type can be easily controlled.

There is no "best" medication for any type of seizure. Everybody reacts differently to different medications. There are other things you can do besides use chemicals. Good Living habits like avoiding stress, let letting yourself become sleep deprived, & eating healthily for what your body needs all contribute. There are also a number of alternative therapies for epilepsy.
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

- i also have heard that i can grow out of it, i find the odds of this happening are extremely unlikely but just wanted to know if there is hope for this happening?

There is always hope. I know for myself though not to bank on it.

- is it truly possible to lead a normal life? i am truly afraid of making it out onto the job market once i am through with college, and having to get a job where i have to wake up early. this is my biggest issue, mornings are not my thing. it is very scary and i twitch constantly. i have almost become a hypersomniac, i sleep constantly to make sure i get enough sleep, but then am overly tired. any suggestions? how have you all gone about your daily lives? i am also terrified of driving a vehicle, not for my own sake but for the livelihood of everyone around me.

I have found that the green drinks you can buy in health food stores help me as well as some protein powder. They make me feel a lot more awake mentally as well as giving me more physical energy. Cutting back on carbohydrates & sugars & increasing your protein might help as well. If it's from your medication you might need to find another medication with less side effects. It's sometimes a tough balancing act- sometimes it's less trouble to find something that causes a slight increase in seizures but has less or no side-effects.

 

[akidwithjme]

i was taking 1000 mg of depakote for a while, and there seemed to be little to no side effects. the medication is just hard to get. being a college student studies are priority, and since the only thing that has ever caused my seizures is sleep issues i tend to just get a lot of sleep since i do not have medication. all of your answers are very helpful, i have used a lot of green drinks to get woken up in the morning. its just the sudden jerks in the morning that suck. i was wondering if there is a program that would allow me to get medication cheaper.

 

[epileric]

Maybe this thread will help.
http://www.coping-with-epilepsy.com/forums/f23/when-you-cant-afford-medication-1452/

 

[Crazy Monkey]

How many seizures do you have?

Mornings are worst for me, I have absences and can be in and out of seizures constantly for the first couple of hours.

I live a normal life and have a good job, I do all the normal things in life accept for being in control of any type of vehicle. This I will never do, not just for my own safety but for the safety of others.

I didn't notice the affects of epilepsy in my teenage years until I reached legal driving age, then life got tough because I was watching all of my friends getting their driving licenses and I was on the sidelines feeling extremely isolated. This feeling has never disappeared for me.

Thats for meds, I live in the UK so my meds are free. But as for the best one for you, that would be the decision of your neurologist. As Eric said different meds work for different people, it depends on the individual.

Also when I was younger I was also told that I could outgrow my E, I never did, but yes, it is possible. You never know, you might be one of the lucky ones.

 

[skillefer]

Hello! Welcome to CWE. Can a person outgrow jme? Yes. I used to have a type of seixure that I outgrew. So yes, it can happen. Should you be on meds? Definitely. If seizures are not being treated in any way, there is a greater chance of them happening more and more frequently and then getting worse. If you can't afford meds, contact the pharmaceutical company that makes the med you are on. Lots of the companies have programs for people who cant afford it on their own. As for insurance, see if you can get it through your employer. That was what I did. I'm a school teacher, and I was covered from day 1, even though I told them that I had epilepsy. In the meantime, do what you can to take care of you. Make sure you get at least 7 hours of sleep a night, eat a healthy diet, minimize your stress, and get rid of all caffeine and junk food in your diet.