I'm New To The Epilepsy Form

[southernbell]

Hi Everyone,

I hope I'm doing this right as I too have never belonged to this type of thing before. I started having seizsures when I was 19. I'm now a 23 year old that was diagnosed (approx. at the age of 21) with Juvenile Myoclonic Epilepsy. I have full-blown Tonic Clonic Seizures and I am still having them to this day. I'm basically looking to see if anyone can offer me advice, support, etc. as I have no idea how to deal with it. I'd appriciate any advice that anyone can offer I'm trying to make 2012 a better year than the previous 4. Thanks!

 

[Nakamova]

Hi southernbell, welcome to CWE!

You're definitely in the right place -- CWE members are a great source of anecdotal advice and empathy. Please feel free to explore the different forums here, and post any questions or comments.

This link is worth checking out: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ It provides a lot of good basic info about being proactive in dealing with epilepsy.

One of the best pieces of advice it mentions is to keep a seizure diary. If you track not only your seizures, but other aspects of your health as well (sleep patterns, meals, nutrition, hormones, etc.), you can potentially identify triggers that may be contributing to your seizures.

Since your seizures are uncontrolled, have you and your neuro discussed modifying your treatment in any way, either by upping your med dose, or trying a different med altogether? Other complementary approaches to consider as well, are special diets, and neurofeedback. Some CWE members have found that these approaches have helped to reduce the number of seizures they are having.

Best,
Nakamova

 

[southernbell]

My neuro has fiddled with my meds, a lot. So has my family doctor as I live in a small northern town that has limited access to neuros. (He come's up about 3 times a year, if that). I'm happy to say that I am in the process of moving to a bigger city and having better access to neuros and better medical care etc.

How do you find the special diets to follow? Could someone please suggest them? I've read some posts on here and it seems like its a lot of different starches to eliminate. I've tried doing the herbal thing, but one doctor said to stop that immediately as it was not doing good to my body. So I would suggest to anyone that wants to try herbal remeidies, consult your doctor first! And by herbal I mean vitamins and such.

 

[epileric]

Welcome SB

I do think you were smart to mention using other supplements to your doctor. Many people don't understand how important that is.

The diet that that has been shown to help children with epilepsy is the ketogenic diet and some people say the modified atkins diet can help I haven't found any scientific studies yet that show that the M.A.D. can help adults with epilepsy. Even when they are done they should be done under a doctors supervision so you should talk to your neurologist about it.

Basically just eating and living healthy can help improve your seizures.

 

[Nakamova]

According to the studies below, the Modified Atkins Diet (MAD)has helped both kids and adults with seizure control:

http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults
http://www.ncbi.nlm.nih.gov/pubmed/17919301
http://www.ncbi.nlm.nih.gov/pubmed/21126887

There's less data on gluten-free, but it has made a difference for some.
http://www.ncbi.nlm.nih.gov/pubmed/21189704
http://www.ncbi.nlm.nih.gov/pubmed/9548226
Anecdotally, several CWE members have reported that a gluten-free diet seems to help with their seizure control. Its success may depend on whether you already have gluten sensitivity/intolerance or other gut issues that interfere with absorption of nutrients.

As Eric says, keep your doctor in the loop with any dietary changes you might make.