Just saying hey!

[Tejkou]

Hi there community! :hello:

Here's how my story goes: I'm 18 and I've been recently diagnosed (recently as in.. two days ago) with JME. I was hospitalized after a grand mal seizure (hopefully the only one I'll ever have), but had myoclonic jerks for about two years now (I didn't pay much attention to them since they were so rare, though I did visit a doctor a couple of months ago only to find that my EEG scan was misplaced until the grand mal seizure occured).

Basically, everything happened so suddenly and I'm very overwhelmed about all the information and the whole situation in general. I'm not really keen about medicating myself and would like to learn more about any good alternatives and also any other useful information a newbie should know is very welcome.
I also wonder how the diagnose affected your life or the lives of people you know, because all that my doctor really did was scare me and the whole family ...

So if you have anything of such to share, please do, and if not - I simply greet you as a new member!

 

[Annicus]

Hello

 

[Nakamova]

Hi Tejkou, welcome to CWE!

Here are two great links to start with: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

Best,
Nakamova

 

[masterjen]

Hi, Tejkou and welcome to the forums. You'll meet lots of great people here. Feel free to ask any questions you may have. No question will be considered a "dumb" or "stupid" one. The majority of us here developed epilepsy later in life (in teens, 20s, etc.) and so can understand the sudden change in one's life (and in the lives of their family's) when having to deal with seizures.
See you around the forums!

 

[Fedup]

Tejkou

You are very welcome to CWE, there are fantastic people here who will help you. Take it easy for a moment before you start getting into things, but there is no need for you or your family to be scared.

 

[chop456]

Hello Tejkou. Welcome to CWE. My daughter was also diagnosed with JME 2.5 years ago (she is now 16 1/2). I also found this forum soon after she was diagnosed and found it to be the best place for support, to ask questions, and to educate myself. I certainly do not have all of the answers, but I have and continue to educate myself and if I can be of any help, I will try my best. Again, Welcome to CWE!

 

[ctlnld]

Hey, fellow newbie here!
guess i'm a little late in finding this thread but I came across it & figured I'd share a similar experience in hopes that you might find it useful...

I was also diagnosed with JME around 18yrs & have had it for about 7 yrs now... it was just the myoclonic jerks at first for a while too (which i ignored of course) and then the gran mal. no denying that one. I hope that's the only one you ever have too!

I haven't tried any alternatives to meds dr's have put me on (clonozepam, depakote and now keppra) but I think it's definitely important & worthwhile to find a way of managing your seizures that you're most comfortable and happy with so keep on checking those out!

The time around my diagnosis was pretty terrifying for me as well- I didn't have much information (silly dr.) and didn't know of anyone who'd gone through anything remotely similar. Doing research and information gathering helped me feel more in control and gave me a better understanding of what was going on with my body...the more you know I guess. From my short time on here, it seems like there's a ton of knowledgeable and supportive folks who know of some great resources so it seems like you're starting in an awesome place. Best of luck!

As for how JME has affected my own life, for the most part it's been in less noticeable, quieter ways (less noticeable to people who aren't me I guess) after getting seizures under control. It's mainly the need to always be aware of making sure I avoid triggers, get enough sleep, always have access to my meds, go to the neuro etc. It's been a little harder to overlook things like med side effects and explaining my epilepsy to people when it comes up but that's just me

I'm so sorry that your doctor scared you and your family- having an unexpected seizure can be scary enough. I hope that you're able to find some alternatives you're interested in that work for you. Getting diagnosed with epilepsy can definitely be overwhelming & a lot to deal with at once, hang in there- it definitely doesn't mean that your life has to or will turn upside down (I know I definitely felt like mine was about to).

Another thing I found helpful was trying out a few different drs. before I found one who I felt was giving up to date information and actually engaging me in my treatment, offering different options etc. Might be worth a try if it's something you'd want to explore & is an option for you!

cheers & all the best,
caitlin

 

[cawhitern]

Welcome from another newbie!

My seizures started in my late teens as well and my parents were right on top of it, getting me to a doctor, appropriate testing, etc. That's been over 35 yrs ago. I've led a normal life, drive, work, married and have children.
Sometimes I think it was harder on my parents, family and friends than me. Support is important. You have to take care of yourself, eat well and get plenty so rest. Learn as much as you can about your seizure disorder. This site is an excellent place to educate yourself and your family. It's also a wonderfully supportive place!

I wish you the best of luck, and again, welcome!