Epilepsy support group?

Question

Okay so about 7 years ago I was diagnosed with petit mal seizures (the ones that last for 3-5 seconds). For most of that time I have been lucky not noticing the seizures due to Lamictal and Zontagran, but ever since I had one myoclonic seizure (where I fell to the floor and jerked all over the place), things have been a lot different. Like now I have switched from my old medicine to 2 others in the course of a 4 month period, and the dosages are always changing. The first medicine they put me on didn't work because I got serious depression and the second one I am currently on hasn't done anything but make the seizures come back! My parents, especially my mom, are very supportive of me with this. It's not like I get made fun of or anything, but everybody besides my mom doesn't know what the kind of seizures I have look like. That's one reason it makes things really frustrating! I also feel like if I let my anger out on the switching of medicines, my friends or family won't really understand because none of them take as much medication as I do.
I know that I am a lucky case compared to all the other epileptics out there, and I am sorry this is long, but I want to know if there is some website or something out there that will let me talk to other epileptics my age (I'm a senior in high school). It would be nice just to talk to somebody who has the same thing I do.

? · Accepted Answer

Not sure where you live, but you can get contact info to your local Epilepsy Foundation affiliate and maybe they can point you in the direction of a support group.   Go to epilepsyfoundation.org and under "Start Here!" click on the "local affiliate" link.  Or you can check out meetup.com and maybe they have a group for people with epilepsy in your area.

? · Answer

Your state will have a division of The National Epilepsy Foundation of America then there will be segments for different towns and places all over the state. and they will have weekly support meetings. Ours meets every Thursday at four, for example. You could go to their website and scrole around or just google a group in your area code. They are always looking for more members. I would say be willing to keep switching eventually you may find something that fits you best. I've tried probably every med on the market and it probably took about 20 years before we found what I was happy with. I have to say Meds arnt fun but it could always be worse. I take 5 different kinds and 25 pills a day. But I would rather be taking meds than get the side effects that come from not taking them.

pioneer_grrrl1979 · Answer

On facebook, there is a women and epilepsy support group (women only). It's private so personal information you share with the group won't be available for public viewing. This is the best group I've found.

I've personally not found the epilepsy foundation helpful. My local affiliate is not even public transit accessible--which would kind of seem like a given if you are having seizures and are legally unable to drive in the state. Maybe other affiliates are  more sensitive to transportation issues.

Andrew B · Answer

There are loads of support groups out there for people with epilepsy, and some specialising in teens/young adults.

I won't make a recommendation for a specific site, as I'm not exactly sure as to your age, or your location, but try doing a web search for EPILEPSY SUPPORT and perhaps TEENS and see which ones take your fancy. There are a fair few facebook groups too.

As for your epilepsy, it'll take time to try and get the medication and balance right, and this is harder during puberty when hormonal levels change, but keep a positive mind-set, take the medication, and educate your family and friends, and you should find it much easier to cope with.

Best wishes for good health in the future!

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Epilepsy support group?

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