Vagus Nerve Stimulation: How Does Vagus Nerve Stimulation Feel? (Pt. 2)
I had a VNS implanted about three years ago. The surgery involved two incisions, one under the left arm and one on the left lower front of my neck. My neurosurgeon promised a scar between 1-3 inches but it’s probably closer to four. Of course, I would much rather he get the surgery right and have a bigger scar than the other way around. Someone messes up your vagus nerve and you know about it, pretty much forever.
VNS Effect on Self-Image
Perhaps oddly, I found having a large scar on the front of my neck rather damaging to my self-image. It may seem shallow but I felt like a freak for quite some time. It really didn’t help having a device implanted in me either. I felt like I wanted to claw the foreign object out with my fingernails. It just all felt so wrong.
Turning On the VNS
A month after implantation the VNS therapy device was turned on. Only doctors who are certified by the manufacturer can do this and they are the only ones with the equipment. There are very few of these doctors around.
So I saw a new doctor, one of the special ones, with the special device that could communicate with the computer now in my chest.
Alas, my doctor made a mistake when he turned it on. He ran a diagnostic that was four times the dose that should have been given to a new implant. The pain was beyond, well, pain. It was instantaneous, excruciating agony with accompanying choking, coughing, screaming and an inability to breathe. I felt like I was being strangled to death from inside my throat.
It was probably the longest, worst 30 seconds of my life.
Rest assured, this is atypical.
What the VNS Feels Like Today
Once set correctly well, it still hurt as it electrocuted my vagus nerve. It’s not surprising, really. Electrocution doesn’t really have fun overtones.
The electricity was turned on for about 30 seconds each hour. Over time the “dosage” is increased by manipulating several variables available on the device.
During what is laughably termed stimulation, there is still pain in my throat, my throat still constricts, and it hurts to talk, that is if you can understand me and I’m not coughing. This isn’t exactly, or anything like, what they describe in the brochure.
Now don’t get me wrong, some people find the device unnoticeable after a time, I’m just not one of those people.
And Now, VNS Magnets 'R' Us
And perhaps most annoyingly, I have to carry around a magnet (just looks like a black plastic rectangle) that can be used to turn the device off, should it malfunction. I also have to use it if I want to talk when the device goes off, like, say, during an interview or a big fancy presentation at work.
Much to my chagrin, people at my last job assumed it was for my heart and assumed that if I had the magnet over my chest it was because I was so stressed it was causing heart problems. They, then, perceived me weak and incapable. No, I didn’t find this out for quite some time.
Does VNS Work?
And as to whether VNS works? Well, for me I would probably say no. But it’s really tough to tell because it actually takes a full year of having it on to really assess it, and it’s impossible to tell exactly how this year is compared to the last between the 10+ medications that have happened since now and then. But again, other people react differently to VNS.
Would I Recommend VNS?
My advice is this: don’t get stuff implanted in your body unless you’re really, really sure you want it there for the rest of your life. It’s expensive, it’s painful and really, there are things about it you won’t anticipate, and all the doctors will make it sound easier than it is. It is easy for them. They don’t have to wear it for the rest of their lives.
(FYI, the VNS device can’t be explanted. The computer can be surgically removed, but the wires can’t be due to risk of vagus nerve damage.)
Tracy, N. (2010, November 1). Vagus Nerve Stimulation: How Does Vagus Nerve Stimulation Feel? (Pt. 2), HealthyPlace. Retrieved on 2019, July 17 from https://www.healthyplace.com/blogs/breakingbipolar/2010/11/vagus-nerve-stimulation-how-does-vagus-nerve-stimulation-feel-pt-2
Author: Natasha Tracy
I won’t do
As you said we are alike I see now
I still now and never, they said I was the Best thing Doddle and the happy she ever was with me in her life and , I think Robert is bio polar to he so much like her he happy most of time . Like me when we’re together I know he would love you to but you and Mr C don’t talk Bob talk all the time
He lives a different kind life but you can talk to him about it as he says he wants sex tiered of it
He has been lot for me and my system is going through some things I need some help
they didn’t have time for me to go to doctor for me but they have sex very selfish I think
She could have help me with saving my money and house but she stopped and stole him from me
I not dumb when I gave up for other people this Country her son who is the service and daughter who was married and going through a divorce and never called me back but she still stole my husband
It’s ok God knows where my heart was and We both still talk to each other . I lost my Grandma and his sister , but that’s ok I see her again one day she has a room with a name on it .
And I met you all this is not over yet
Till the trumpets sound anyways
I Do Love You
I was 4 years old. I've like many people been on many medications. The thing I worry the most is how hard is it to swallow pills? How well dose it work on treamors? I'm wondering since I have those daily. Can anyone help me PLEASE! I'll be getting my VNS the 1st week of June of 2017.
Brian, you seem like a smart guy. I am assuming that in your quest looking for an attorney, even though you said you had very little money, I'm sure it's probably too much for a legal aid attorney. My advice is to do the legal case yourself. I can see you are good at research and if it's at all possible, try it yourself. See if your state will allow you to file your own case. I've done it three times now, all on my own. The first one was a Guardianship case. I won it, no lawyer. The second was a probate case to get someone removed as Executor of an estate, no easy task, really nearly impossible. I did it on my own, and I got the person removed. I'm now suing this person and her lawyer. I'm doing it on my own. As long as you have evidence, receipts, etc. - undisputed evidence, it's hard for the person you are suing to win. A lawyer will only take your money and delay hearings so he can make more money. That's how the system works and when they feel enough guilt because they've taken all your money, then they will "settle" the case for you and you will lose even more. You are great at research. You have nothing to lose by inquiring at your local court house if you can do it. It doesn't cost much. Try it. You will be surprised to find out how much you can do on your own. Really and truly the best advice I can give you or anyone is to pray first. Pray all day and all night. That has what has gotten us this far with my brother. God truly has been good to us and we'd never made it this far without prayer and a few miracles thrown in. It would have been a lot worse on us all the way around if we hadn't prayed and had others to pray for us as well. We continue to pray and continue to ask for prayer. God is good to us, He really is.
I don't see any reason why vagus nerve stimulation would cause a headache, but I'm far from a neurologist.
You can see the vagus nerve effects here: http://en.wikipedia.org/wiki/Vagus_nerve
Now my scar barely shows too. It takes a long time but these things to heal. Yeah, I would just get the thing shut off because of how it doesn't help but there's no one around here that has VNS equipment (I've moved since I had it done).
I have a problem with getting really cold then having a headache afterwards. I know if you have a problem with your vagus nerve you can get cold and even faint sometimes so I am going to ask my neurologist when I see her if my vagus nerve implant could be causing this. My other doctor has no idea why I feel this way and has done blood work and tests to see if he can find a problem and he said my blood pressure is fine. but i was wondering if it could cause me to get cold and a headache when it goes on and off by interfering with the vagus nerve. any one know?
I‘m sorry to hear you are having such troubles with your VNS. Not everyone experiences that but I certainly know what it‘s like.
I just wanted to encourage you to look at the settings of the VNS. I‘m a little rusty now but if memory serves there are three settings that control the strength and a change in any of them may affect the side effects you‘re feeling. You may want to look into that, if you haven‘t already because it sounds like it might be hard to live like that long-term.
You could also consider a slower increase in dosage. (In other words, go back down to something that is more bearable for you and try this dosage at a later time once your body is more used to it.)
Not being able to breathe when you walk up a flight of stairs doesn‘t seem to be very reasonable.
- Natasha Tracy
I have only had my vns since October 2017 and am at a low dose of .75. This is not even a therapudic level but I have seen a decrease in seizures and recovery time. I was turned down .10 yesterday. I have also not let my doctor increase shock time and I have decided when and if I get turned up. I will stay put for the foreseeable future. I was told 18 months was the finish line so time will tell.
No, it will not last forever. In my experience, it lasts longer than they say it will, but you will get better and adjust to having this new item in your body.
That being said, if you are at all concerned I recommend contacting your surgeon (or sometimes a surgical nurse can help you).
I have seen a big decrease in seizures. I expect this to improve over time. What we should all remember is that WE are in charge if our bodies and vns. I would not let my doctor increase the shock time. I am still at 17 seconds every 5 minutes. I have also had my heart rate function turned down twice but I’m still pretty action intolerant. Because I am new to it I am determined to find a balance.
I had such bad luck with drugs. I found my doctor (OHSU in Oregon) not as educated about drugs but I develoved a trusting relationship with my pharmacist. Ha ha
Thank you for sharing. We are all a kind of tribe. Noone else knows what this is like and I find reading everyone’s story helpful.
Oh, lately I have only been using my magnet for “vacations”. Laying down for a half an hour with magnet on battery. You can also use medical tape.;)
Yeah, that's what I found too. "Mild discomfort" was obviously written by people who had never had one implanted.
I hear that for epilepsy it only reduces seizures by a small percentage, statistically. Something like 15%. That's an unfortunately small number but I'm sure for some completely worth it.
I don't feel the leads tug too often, just the strangulation and inability to talk. That's enough, really.
i have one for epilepsy (might also be helping the depressiong that comes along with it), and it goes on for 30 seconds every 5mins,
i've had it for 7 years now and the batteries are due to be replaced. doc would just leave in there, turned off for a while, and if it shows no difference without it, want to leave it there, i dont like when it turns on, sometimes i lower my chin to help relax it. i tollerate it but dont like it. the thing in my chest is also uncomfortably when lieing on my side trying to sleep, the thing flops around inside and stretched
anyways... just felt like mentioning it, now i am just waiting for the batteries to run out.
I think when you choose the right doctor they can be as trusted as anyone else. In the defense of this particular one, I did hear more of what I wanted to hear - hope.
But you have to understand, for people in my position, there is nothing _but_ long shots. This guy wasn't offering anything better or worse than anyone else.
Thanks for that info. I am beginning to wonder if the doctors can really be trusted. Afraid they are in-the-dark as to what to do. Now with all the negative info coming out about the psychiatric drugs, I am relying on large doses of fish oil and vitamins, and seem to feel better than I did on any antidepressant with zero side effects. I am so sorry for your pain. Hopefully, you will find some relief soon.
well yes, not my favorite thing.
Honestly, it was a serious long shot. If you look at people with my history you'll see that vns works almost none of the time according to research. True a very big-time doctor gave me extremely positive numbers, but I would say they vary tremendously from real people in my situation.
Regarding other meds, vns is actually an adjunct treatment and only approved for use in conjunction with meds. Theoretically vns should increase the impact of the drugs.
That sounds absolutely horrible! My understanding was that you tried the VNS if it had been found that none of the medications worked for you. Perhaps taking so many medications in addition to the VNS negated any positive effects it might have had?