Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

VNS???

I'm new here so this is my first time posting (hope I'm doing this right)! :) I've had epilepsy since 1988. I had surgery 3/1995. Had great control for 15 years then I started having nocturnal seizures only. Right now I have maybe one a month but when I do they're bad! last time I had 4 in one night. Long story short now I'm considering vns therapy. My question is are the side effects of having a vns worth trying to control a seizure that might happen only once a month??? I've tried a host of different meds/dosages with no luck. ;(

Comments

Oh, one other question. Can

Oh, one other question. Can the device be turned off by the patient? I'm just thinking if I only have seizures while I'm sleeping maybe it wouldn't need to stimulate while I'm awake???

The person you need to talk

The person you need to talk to is your neurologist, They can tell you more and can look at the different things that will need to be done in order for you to even have it.

VNS can be shut off by

VNS can be shut off by wearing a magnet.  This is not easy since if the magnet moves off of the generator it goes off at its higher setting.  I had VNS for five years and I enjoy singing in choir.  VNS causes a change in the voice when it goes off so I couldn't have it going off when singing.  Your thought on only having stimulation during sleep makes good sense, but I think it is believed that VNS provides its benefit by regular stimulation throughout the day.  If VNS is effective for you daytime stimulation will probably provide benefit for the nighttime seizures.  You might want to ask your doctor about Responsive Nerve Stimulation (RNS) as this will only give stimulation when needed.  Also RNS records seizure activity and I'm told provides useful information for drug therapy your on.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline
P