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: Refractory seizures and there increasing

Submitted by Cedar on Sun, 2005-05-01 - 08:31
Belinda, do you know the causes of your refractory epilepsy? My reason for asking is that I have bilateral refractory epilepsy. For years I was medically controled as best as possible. When my meds did not work. I tried the VNs and had it turned it off, due to increase of seizures and side affects. What I want to share here is that I found out last year was the cause of my epilepsy. So now I am learning to better care for my self and am hopefull the lamictal and keppra will work.Se if you can understand the cause. Surgery is not a option for me due to it being bilateral. I wish you the best with your situation if I can be of further support let me know.

RE: RE: Refractory seizures and there increasing

Submitted by Belinda on Sat, 2005-07-02 - 20:37
cedar,They don't know what caused my refractory epilepsy.I've always had refractory epilepsy.Been 41 yrs and I'm just worn out from trying. Belinda

RE: RE: RE: Refractory seizures and there increasing

Submitted by txrhb1 on Mon, 2005-07-04 - 00:27

Hi Belinda,

I've read many of your posts, and I have to say, it has been difficult for you.  However, I have learned a lot from reading your posts, and I appreciate it.  Your willingness to share both the good and bad is admirable.  I wish I could help you, and all I can say is that I think of you often.... sending good thoughts your way.

Barb

Hi Belinda,

I've read many of your posts, and I have to say, it has been difficult for you.  However, I have learned a lot from reading your posts, and I appreciate it.  Your willingness to share both the good and bad is admirable.  I wish I could help you, and all I can say is that I think of you often.... sending good thoughts your way.

Barb

Sign Up for Emails

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