newly diagnosed

[Gbutterfly]

I was recently diagnosed. I wasnt really told exactly what type I have, I was told I have mini siezures (all day/night long). They are trying different types of medications and I hate them all. Is there any natural way? Does anyone else have this and can share with me what has worked for them? There are only a few medications my doctor tried so far, and all of them do not seem to be working. (besides the sides effects that is)
I have been looking on line to find answers but it's been one big black hole. I was hoping a forum might help.
ANYONE? PLEASE?? :dontknow:

 

[Nakamova]

Hi Gbutterfly, welcome to CWE!

While medication is the default treatment for most people with epilepsy, there are other approaches that have helped some of the folks here at CWE to reduce or control their seizures. These approaches include neurofeedback and special diets (such as Gluten-Free or Modified Atkins). You can learn more about these by using the search tab.

It can also be helpful to keep a journal to track seizures and their triggers. Recording info related to diet, metabolism, overall health, sleep, hormones, etc. can potentially help you identify (and avoid) your seizure triggers.

I hope you feel free to explore all the forums here at CWE. There are places to post questions, share news, chat, play, and vent, as needed.

Best,
Nakamova

 

[RobinN]

The meds didn't help my daughter either, and the side effects were not acceptable.
So we have been working with nutrition. Can't say there is a name for what we do, but the knowledge base comes from a Gluten-free, Casein-free diet, with strict label reading to eliminate chemicals, and also to lower refined carbs and sugars.

It has been helping a lot, and continues to improve with time and strict adherence to a whole foods approach.

Welcome to CWE. I think you will find the support here that you need.

 

[epileric]

Welcome

Hope you enjoy it here, I think they're a great crowd.

Hopefully this link will let you decide what type of seizures you have. There's a lot of other good stuff on it too. http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

Also, there are other things you can do that work well in conjunction with medications (at least at first). http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments Meanwhile you might want to try things like taking your meds on a full stomach or spreading the doses out throughout the day (if possible).

 

[Gbutterfly]

Thank you all... already I can see this is a good start!

 

[celesteam]

Great start! Here's what's been working for me too...

It can sure be frustrating puzzling out the triggers. I am new to all this as well and don't have all of the expertise so many here do. I can tell you that switching my diet has made a huge difference for me (essentially a gluten and processed sugarfree diet, no processed foods). And that is true even though my doctor did a "gluten tolerance blood test" and it came back "normal." But if it's helping to stop having it, then it just goes to show that not all test show what is accurate for individuals. Oh, and the change in diet has a great side effect. I've lost 8 pounds and I eat all the fruits and veges I want! Plus the basket of fresh fruits and vegetables looks fabulous on the counter. Tee hee. But I am sticking to it because I really want to help my body and brain cope with the "seizure storms." Adding Magnesium has also made a big difference (I take it in Chelated liquid form. It doesn't win any flavor award in my book, but I seem to have far fewer seizures and to be less "foggy" when I take it every morning.)
Oh, and I found one just by following what I craved... cinnamon. Added to tea or protein shakes (about 1/3 teaspoon) also helps. I looked it up later and found it was recommended.

I have an odd trigger... fluorescents are almost guaranteed to cause one now (the more I have, the easier it seems to be for my body to have them). Who would have guessed? I certainly didn't, and I had been living under fluorescents and working at computers full-time for years, until the seizures started. There are special glasses that are supposed to help with those triggers. I just scheduled an appointment to be fitted for some. If you would like, I'll let you know if they help me.

Bottom line... the brain is an amazing organ and we are all unique and so HOW can we expect any one answer to fit everyone? Take it easy on yourself as you go through this. I'm finding that it can sure ease the process to add a little acceptance into the mix. And little by little I am puzzling through to find things that help a bit. Here's hoping you find the pieces that will support more and more "well spells." A lot of people will be cheering for you from the sidelines. You are not alone.