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 side effects

So, I had VNS surgery about a week and a half ago and every time it goes off it feels like my throat is tightening and there is a pain where the nerve is. Does this ever go away or lessen or does this persist and never leave.

Comments

Hi Camryn, I had a VNS

Hi Camryn, I had a VNS implanted appx 5 years ago and I have to admit, that at first, I thought it was kind of rough to get through. I remember going in to see my neurologist to have the level increased 2 times, which is typical, and each time it caused me to cough and lightly choke, which is also typical. But now, the only time I really notice it, is when I am talking to someone, or walking and talking to someone and it is "in motion" because I run out of breath and in a sense, somewhat, lose my voice. But now, if I'm sitting here watching tv, or cleaning, cooking, or doing anything else, I don't even notice it anymore. Don't give up, it's worth it. The bracelet has saved me from many seizures. And just a hint, if you were given an extra, use that extra and place it in your shower, as they are waterproof. I don't know about you, but I have experienced many seizures in the shower, and this has saved me from so many. Good luck! It doesn't take long.

I received mine from a mortar

I received mine from a mortar round while in the army. My sister who is a Dr. is all about the strange and unusual i.e. CBD VNS acupuncture anything to torture her younger brother. I do a lot of running marathons etc. from the sounds of it that won't be happening. All I ever hear is a lot of pain associated with it. 

Hi again, You received yours

Hi again, You received yours from a mortar? I'm sorry about your sister. Some people just don't understand our world.But I have such a mild level of pain from my VNS that it's hardly even noticeable. And remember that it lasts only 20-30 seconds. Just give it some time to get use to, give it a chance. Also remember, that you can have it removed, if you decide to.  Just one question, where are you getting all of the pain at? The throat doesn't bother me anymore, other than being a little out of breath, if I'm talking. For me, it's a pinch in my ear from the wire each time it goes off, but it's so minor that's it's doable. And don't give up running marathons yet. You "may" be able to run them still. I have no problems doing my things, as long as I'm not talking "while" doing those things. You just can't do both "at the same time".I was having around 7 seizures a week, sometimes 3 per day, and it's brought me down to around 2-3 seizures a month, 5 a month, depending on the stress.It's still worth it, it just takes time to get use to.Keep me up on how you're doing.

The VNS, that they implanted

The VNS, that they implanted in me, had the same effect. It was like a board was pressed against my throat. You may also notice routine hoarseness with your voice. Over time, though, the impact diminishes. It will return when your neurologist elevates the setting, with your body gradually adjusting. 

CBD oils/edibles?And what us

CBD oils/edibles?And what us VNS acupuncture? I have fibromyalgia as well-hoping that it might help with that, as well.I've only had mine a few weeks, so still some discomfort-I'm waiting to see if I get a comment, soon. I'm afraid I may have disconnected the lead last night. No pain (except right after it happened, lol)Good luck-praying you will be able to sometime do run. Maybe you can tape it to your chest whike running? Ive heard people do that during speeches & what not. 

Anyone here? Question about

Anyone here? Question about my VNS...Not looking for medical advice, as I am calling Dr in morning.47yo female-I had my device implanted 1/23/19. Tonight I stretched really big and felt a pop. I waited for it to go off again (every 5 minutes) and finally just grabbed magnet to see if it was still connected. I felt it in my chest (that kind of pressure feeling) but didn't feel it in my neck like I normally do. Question is, if the lead becomes disconnected from device, would I still feel the 'pressure'?Thanks for any help you can provide and have a blessed day.

These things can happen when

These things can happen when you get your VNS or have the settings changes.  After a it will go away because you will get used to it.  The only time you will probably feel it is when you use the magnet.

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