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Being new to Epilepsy...

Sat, 05/22/2004 - 23:15
Hi, my name is Stef and I'm 28. Since I'm new to the notion of having epilepsy and that I only started taking 300mg/day of DILANTIN a few days ago, I'm wondering this :Are all the stories on these forums the unfortunate stories? I mean, are there any success stories for people taking DILANTIN or other medication?I'm not going to let this disorder win, but I would like to know if there is light at the end of the tunnel. I only get a few seizure per month and they're always while sleeping.Anyway, just looking for some experienced input in this.Thanks,- Stef.

Comments

RE: Being new to Epilepsy...

Submitted by picnupthepcs on Mon, 2004-04-05 - 22:35
HI Stef,Sorry you had to meet us all this way, but really just keep your chin up and keep smiling. For the most part those of us are either living with a seizure disorder or have a famiely member of friend we care for and love very much living with a seizure disorder. I personaly have epilepsy and struggly with it everyday but I try very hard not to let it get me down. If you go through and read some of the post you will see there are many who have just found out about there epilepsy and some who have known for years and are doing well on medication, and some who did very well for long periods of time on medication and now have i guess you could call them relapses. I personaly know of 3 people in my life who are at different stages in there lives other than me 1 who had seizures as a child and has been seizure free for over 30 years another who's seizures started as a teenager and as been on medication for about 10 years and with that medication has been seizure free for about 8 years now, another who strted having seizures in her 20 and now is in her 50 and has been siezure free for 30 years. so there is hope. I personaly have been told that i will be on medication the rest of my life, but I woun't let it get me down. We are all here if you'd like to talk and check out the site you can learn alot here. Also the best advise I can give you is ask your Dr. Some seizures are out grown some accure because of changes in the life cycle. only your Dr. can answer these questions for you. And some of us will never know why.good luck and hope you find the answers your looking for.Cindy

RE: Being new to Epilepsy...

Submitted by mommy2kyra on Tue, 2004-04-06 - 16:50
Hi Stef,I think that we all have a tough time here and there (whether you have epilepsy or not). Having a seizure disorder throws a curve ball into your life, that's for certain. You have to deal with meds, side effects, the social (and sometimes, legal-driver's licenses and such) impact of these disorders...for some, it can be overwhelming. Other people, not so bad. But, it can be that way with many disorders. Some people with diabetes, for instance, are in the hospital every week. Other people deal with no major complications from diabetes for 30 years or more. What you can do to protect yourself, and make life a lot easier, is to learn as much as you possibly can about seizure disorders and their various treatments. Learn about the medications (and side effects) that are compatible with treating your particular type of seizure(s). Make a mental note of seizure triggers (hormonal fluctuations, stress, sleep-deprivation, etc.) and try to avoid the ones that bring seizures on for you. You also want to make sure any significant others know about your condition, and that they let you know when you do have seizures (nocturnal or otherwise). This way, you can get med levels checked and adjusted, if necessary.One last thing, it's a journey. You go through a whole range of emotions when you're first getting started, and it can seem very intense. But, eventually, I accepted that I probably will be on meds the rest of my life. All is not lost. I still have a life. I'm happily married, and have soon to be two children. I still have occasional breakthrough seizures and I probably always will. That is because my body is always changing. As a result, my med needs change as well. Sometimes I need more, sometimes less, and sometimes I need to switch altogether (which is ALWAYS difficult).I hope that you've gained a little better understanding of what you're up against, and that you feel better now :) Support boards like this are great for when you're having a tough time, or when you have support to lend to others. Best of luck to you..take care!Heather

RE: Being new to Epilepsy...

Submitted by Spc_Rick009 on Tue, 2004-04-06 - 18:38
Hi Stef, i too am new to seizures, i have had them knowingly for 6 months, but now that i look back i've had them for years. but the doctors don't know which kind they are yet and this worries me. i have symptoms of several different seizure types and i am on 3000mg per day of valporic acid(deperkene). i find it difficult to work and just about everything triggers them, sunlight,stress, overheating, lack of sleep. if anyone has any words of incouragement please fell free.

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