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CopelandNole

CopelandNole

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Hi All - I am new to the site and am looking for anyone who knows about alternative treatments. I was diagnosed with left temporal complex partials about 3 years ago and have not found an effective medication or combination of medications yet. I am currently giving up a Ganaxalone study at Emory University in Atlanta as it is not effective either. Resective surgery is out as I failed two WADA tests and I am now looking into a Neuropace study. I am looking for any and all information on it as I am terribly intimidated by not only the study, but the intracranial monitoring surgery that precedes the study. I would appreciate any feedback that anyone has.

Thanks and Cheers to all. I look forward to being a part of this site!
 
Hi CN, welcome to the forum. :hello:

I've posted a lot of information about alternative options in the chart (see link in my signature).

You can find a lot of information about the RNS here: http://www.coping-with-epilepsy.com/forums/f38/neuro-pace-guinea-pig-1286/ (be sure to read to the end)

You might also find these topics interesting:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

http://www.coping-with-epilepsy.com/forums/f22/drug-resistant-epilepsy-1161/
 
Hi there,

I just wanted to say Hi! I am also in Atlanta (actually North of ATL) and also have left temp. lobe, complex partials. There are other members that are familiar with alternative therapies, so I bet they will have some ideas. I am on Lamictal and it seems to be working pretty well. Mine are primarily nocturnal seizures..but I also have vit D deficiency and trying to get that back up. From what I've read, having this can actually cause seizures and it helps maintain neuro health as well as alot of other things. Best of luck to you and shoot me a message if you want to talk. Nice to have fellow Atlantans here!!!
Michelle
 
:hello: Copeland!

Welcome to CWE and glad to have you here,
hope those links that Bernard has provided you
are of benefit and feel free to browse around and
make yourself a home!
 
Hi, hello, and

how do ya do? You've found yourself a GREAT place to be! Mr B (Bernard) has made us all an AWESOME home here, so kick your feet up, and check it out. The Library has lots of good stuff to check out, and the Padded Room is great for venting. Oh, and Speber's Auditorium is great for checking out the tunes, too. The Kitchen is a great place to chat.......

So c'mon in, and make yourself at home. Buckeye should be around soon with him YUMMO coffee. I made some cheesecake....help yourself.

Feel free to ask any question you want.......we may not be doctors (and we're not) but we can usually point you in the right direction to get the answer.....

Meetz
:rock:
 
Another from Atlanta,Ga.

Welcome to our family , We aren't all normal but, we get along with each other. Come join the craziness and welcome aboard!
David:hello:
 
Welcome to CWE - I hope you find a wealth of information here.
 
Hi There

Welcome to CWE!!! I'm sure that you will find it both informative and supportive, also everyone is very friendly and helpful, and have been great with me as I've just had my second lot of brain surgery.

I'm afraid I can't help with alternative suggestions, although I also have Temporal Lobe Epilepsy, and like you I have Complex Partial, and Simple Partial Seizures, I've had a few Tonic Clonics over the last 22 years, but following this second operation I am having mainly auras, do you have them, and if you do what are they like, what happens?

I'm currently writing a book on my experinces with epilepsy, and have recently been researching on Amazon.co.uk, go on to it, type in books, epilepsy, and you will be amazed at all the books that come up, it's just that I noticed there were some on alternative therapies there. I find the whole subject of epilepsy fascinating, and I've just finished studying two University course on epilepsy care and management, there was nothing on alternative therapies, but there are books out there, I hope you find what you are looking for, I'm sure someone on CWE will be able to help.

Welcome to the madhouse, and I hope you find it supportive and helpful being here, I'm sure you will.

Cheers

Elaine x
 
Now that is a Welcome.... thanks All!

Thanks to all of you for such a warm welcome. It doesn't get much better than that! I will take some time and take a look into all of the things you have recommended. I am trying to think of so many things that I can try to do or change before I resort to surgery of any kind.....
1 - stop drinking caffeine - I only have one coffee in the AM after all
2 - stop drinking alcohol - this one will be tough, I loooove my wine
3 - more exercise
4 - take more vitamins - I have read some things on this

I will take a look around the site and look at your recos!

Again, thanks for the warm welcome and I will surely reach out to you again as I have more questions! Careful what you wish for!!

Copeland:woot:
 
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