Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Refractory seizures and there increasing

Tue, 05/03/2005 - 08:56
Hi I'm going through more again and again.Brain surgery I've had they won't operate on my left side .Right Side was operated on scar tissue was removed.Seizures coming from other side now.VNS doesn't control it's turned off I'm getting it turned back on Monday.It was choking me seveerely.I have no options left with meds.Been to 4 epi centers NIH Montreal,Emory and MCGCan't afford to fly all over the country. Belinda

Comments

RE: RE: RE: Refractory seizures and there increasing

Submitted by grez-monkey on Mon, 2005-07-04 - 11:05

Belinda,

With all that you've gone through without any positive results, now may be a time for you to look at other alternative treatments. I myself, have gone through several medications, just not all of them. There's a brand new medication, LYRICA (PREGABALIN), due to come out this fall in the US. With the information about it as being an add-on treatment for partial onset seizures, my neurologist may switch one of the two current meds I'm taking (Keppra & Lamictal) over to the Lyrica.

I've also gone through many tests, up to the pre-surgical eeg, with the results of it being very unsafe to have surgery. My loose my speaking abilities. Due to many replies from people with the VNS, I'm NOT going to do it, nor the RNS (responsive neurological stimulator). So I've looked elsewhere and found an alternative which has given me some positive results.

I posted a long story and the information about this alternative on another thread, with my past user name of batman. Anyway, here's the website address that it's listed under. Titled 'Epilepsy Treatment Plan'.

http://communities.epilepsy.com/epilepsy_community?go=800741

If you'd like more information and have any questions about this treatment plan, please reply here or email.

Bruce J

 

* Resource links for Lyrica:

www.epilepsy.com/newsfeed/pr_1110551400.html

professionals.epilepsy.com/newsfeed/pr_1118842200.html

Belinda,

With all that you've gone through without any positive results, now may be a time for you to look at other alternative treatments. I myself, have gone through several medications, just not all of them. There's a brand new medication, LYRICA (PREGABALIN), due to come out this fall in the US. With the information about it as being an add-on treatment for partial onset seizures, my neurologist may switch one of the two current meds I'm taking (Keppra & Lamictal) over to the Lyrica.

I've also gone through many tests, up to the pre-surgical eeg, with the results of it being very unsafe to have surgery. My loose my speaking abilities. Due to many replies from people with the VNS, I'm NOT going to do it, nor the RNS (responsive neurological stimulator). So I've looked elsewhere and found an alternative which has given me some positive results.

I posted a long story and the information about this alternative on another thread, with my past user name of batman. Anyway, here's the website address that it's listed under. Titled 'Epilepsy Treatment Plan'.

http://communities.epilepsy.com/epilepsy_community?go=800741

If you'd like more information and have any questions about this treatment plan, please reply here or email.

Bruce J

 

* Resource links for Lyrica:

www.epilepsy.com/newsfeed/pr_1110551400.html

professionals.epilepsy.com/newsfeed/pr_1118842200.html

RE: RE: RE: RE: Refractory seizures and there increasing

Submitted by Belinda on Tue, 2005-07-05 - 09:59
Bruce,I can't have surgery again.I'm allergic to Keppra and Lamictal.I have the VNSdoesn't work so great for me.If I get it removed my seizures would be worse.Im waiting for a drug for ppl with intractable seizures IM med resistant to a lot of meds. Belinda

RE: RE: RE: RE: RE: Refractory seizures and there increasing

Submitted by grez-monkey on Tue, 2005-07-05 - 11:54

Belinda,

I can understand very well what you meant before and here again too. So my question is, would you be interested in trying the same alternative like the one I'm doing here today, for myself? Or possibly any other alternatives?

So far, what I'm doing is very simple and easy. It's a natural process, and just takes some time for your body to establish itself, like whenever anyone starts taking a new prescribed medication for the first time. Or even a plant being put into the group, it takes time to take root.

oh, and not only is this treatment plan working for my seizures it has also lowered my cholesterol pretty good too.

Bruce J

Belinda,

I can understand very well what you meant before and here again too. So my question is, would you be interested in trying the same alternative like the one I'm doing here today, for myself? Or possibly any other alternatives?

So far, what I'm doing is very simple and easy. It's a natural process, and just takes some time for your body to establish itself, like whenever anyone starts taking a new prescribed medication for the first time. Or even a plant being put into the group, it takes time to take root.

oh, and not only is this treatment plan working for my seizures it has also lowered my cholesterol pretty good too.

Bruce J

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.