Vagus Nerve Stimulation: How Does Vagus Nerve Stimulation Feel? (Pt. 2)

Nastasha:
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?
Leah

Hi Leah,
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.
- Natasha

Natasha,
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.
Leah

Hi Leah,
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.
- Natasha

I applaud you, on your efferts & pains that you have & had to endour for better outcomes on the medical to go with the hope given or your faith. You should get a medal of some sort like a soldier gets for being tortured almost.

Hmmm, yes, a medal. I'll look into that.
;)
- Natasha

i was just scanning around for negatives about the VNS, and the sites only said "minimal discomfort".
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.
thanks, miki

Hi Miki,
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.
- Natasha

I've had the vns for 5years now, of course it has affected my voice. But, also I have been diagnosed with severe sleep apnea. Could this be a complication of the vns? Also chest wall discomfort, increasingly difficult to swallow meds. Extreme body temps. for instance breaking into a sweat and feeling hot. I feel very weak when this happens. It is becoming unbearable and also feel very cold when there is no reason for it. Sometimes while eating the hot spells and sweats will occur. I have night sweats also. Very low energy. The smallest effort leaves me very tired. I am trying to find if others have these issues or where I can find a comprehensive report about complications and or patient complaints. Can anyone help with this or had similar experiences?

Apparently, you should have done a little bit more research on your neurologist. If you had ten years of seizures with no hope with mess., you would be desperate for anything to help. I did the research. With a great plastic surgeon, I have a 3 inch scar that can't be seen and a small bulge where the implant is. Mine goes off every two minutes. I would never want to go back to the way I was; never knowing when a seizure was going to occur. It hurts from time to time, but I am so happy I have it and the key is do the research on the doctor who is pushing it and the surgeon performing it.
Good Luck

I had a VNS put in 7 days ago. My neck still hurts and iam have some difficulty swalling. Is this going to last folr ever?

Hi Vicki,
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).
- Natasha

I had my vns implanted 9 months ago. It is set to go on every 3 minutes for 30 seconds. I get chest wall pain, choking feeling, upper back and neck pain, trouble breathing, and still some seizures. I am still on two seizure medications. My doctor told me it came with mild discomfort. Like many of you have found, it isn't so mild. I wish it would work better. I am still hoping to reduce some of my medications. It does limit me by not allowing me to do many of the physical activities I use to do. I cannot breathe, even getting up a flight of stairs is hard. Still hoping for improvement.

Hi Michelle,
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.
Good luck.
- Natasha Tracy

wow. i'm glad i had a really good neurologist and neurosurgeon. They didn't guarantee it would work but because of how bad i am suggested it along with my other meds. My scar barely shows, my surgeon did a good job and he told me to put vitamin E oil on it right after the surgery until it looked the best it could. (it helped ). My doctor slowly raised the level. of course right after the surgery it drived me nuts like i was choking and my voice would be hoarse but the doctor got that adjusted. It helps me a little bit, but i didn't get my hopes up before the surgery because I knew that it didn't work for some people. But I get some help with it especially when I need to use the magnet. I know it can cause apnea with some people. Good luck and it sounds like if it is bothering you that much maybe you should get it taken out when the battery runs out. Did they give you a sleep apnea test after it was put in? They gave me one. of course my neurologist is also the head of the sleep disorder clinic as well as the epilepsy dept. I had one done before and afterwards to check for apnea. They don't like putting one in if you have apnea unless they think the risks outweigh the benefits. Sorry to hear about your situation.

To Judy:
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?

Hi Heidi,
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).
- Natasha

Hi Heidi,
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
- Natasha

[...] likely going to be shy, scared, of it in the future. In my case I had a very bad experience when my vagus nerve stimulator (VNS) was turned on (doctor error) which resulted in immediate agony and terror; and yes, I have [...]

I am so sorry to read about your experience, especially since the vagus nerve can be stimulated using Biodynamic Massage without the need for surgery.

I have had a vns for 10yrs now. I've had it replaced once. My old neurologist left state so I found another one and thought I was in good hands but wasn't. After four years with her I found another one. The first visit with him I let him know I was going on 2yrs of my implant not being checked. He checked it that day and told me it was still on a kids level. I am now up to being on for 30 seconds off for 5 min. We are gradually increasing the stimulation also. I am so scared each week I go back of what it will feel like because of the pain. My implant also flips out when I lay down and I have to push it back in and keep my hand on my chest til I get comfortable. It has helped with me seizures though. 11yrs ago I was on 21 pills a day at 17 now I am on 2. Sometimes I have problems with the area around the vns going num and have to massage it. My voice has started going in/out again as we increase the stimulation. I am sorry about your experience.

Im trying to decide whether to have the vns. Im going off the idea more and more. I've had epilepsy for 31 years and its not easy to control. But I don't think I want something like that in my body. It seems like a load of hassle to me and very uncomfortable. Its probably best to have something like that when your older and your kids have left home. It might scare my 5 year old.

I have now had my vns for a year and two months. Granted the scars I have are much larger than I was told and the effects on my voice are way worse than I thought, I loved to sing at church & can no longer do so due to it messing my voice up. But my main question is has anyone experienced pain where the implant is? Also it is now got my whole left arm hurting all the time! But like where the vns in my chest is feels bruised.. I'm wondering if I need to contact my doctor?

i had the implant a month ago it still hurts but i needed it my sezuires were bad well nothing like trying something new i hope this works for me

I'm a 52 yr. old male, have been having full Gran mall seizures since age 18, have tried every medication in all sorts of mixtures, also Acupuncture, Acupressure, diet, exercise, etc. In Dec. of 2011 we gave everything up, and went for the VNS! After we turned it on in Feb. 2012 we have tried most adjustments for seizures, but never showed any loss of the seizures in amount or strength to this day (Jan. 2016). Well here's the great news, just over 2 yrs. ago I took-on Chronic Diarrhea in the most constant insane way! I have been working very hard with doctors all over the state, doing 2 full colonoscopy's, 1 endoscopy, 100's of blood/urine/stool tests, 1 cat-scan, diet changes, etc. ALL say I'm in fine health, and the doctors are very lost with my case. I also gained 55 lbs. in the last year, and most think this is fluid retention. Of course my neurologists say this can't be caused by the VNS, but my own research is finding TONS of side effects caused by the VNS. 1 example is the FDA site saying they have over 151 cases of the VNS causing problems with the guts & Diarrhea, where some dropped the problems with turning the VNS fully off, but a large amount of them had to remove it! Even the Epilepsy foundation site talks about the "Tugging Effect" the VNS "Spiraled wire" can cause all by itself! Please note that just in 2015 I went to 122 full doctors appointments, have been so down and depressed that I can't get drive or energy to do much, and in Dec. 2015 I watched my only home of 18 yrs. get auctioned off in Maui, HI.! With Epilepsy on my med. reports, and little cash I never found a good lawyer out here, this BofA loan has shown to be fraud, many legal pros say this looks like a great case to win this $1mil. home back, and if you can help win this I will give you HALF of this Oceanfront beauty that has 2 homes on it's 12k' lot! Note; I moved here in 96', org. from CA., never had kids due to all the meds, have no family to fall back on, have great records, and I'm willing to bend in any way to beat these banks, and get my health back with a VNS removal to! Brian Steffen

Brian I am so sorry you have been through so much with the VNS, and I'm hoping my brother doesn't go through any of this that you are talking about. He is non-verbal and has Autism and other disabilities and we thought we were doing the right thing for him as he has about 8 or 9 seizures a month and he is 59 years old and they are slowly killing him. This was a last resort thing for him. We had it put in last month and he has had 2 adjustments. Our question is, the pressure that builds up prior to a seizure, what happens to that when the VNS stops the seizure. Apparently my brother is having horrendous headaches and we don't know if it is from the VNS or what. Nothing we give him helps this headache. I'm calling his doctor today to see what he thinks. I thought I'd done all the research but apparently I hadn't. I spent weeks of all day and all nighters doing the research and was assured that even though my brother is non-verbal, the pain would be very little. I doubt that now especially after the week he is having. He's been having "episodes" and it seems to be brought on by head pain. Since he can't tell us, we don't know. We've had very little sleep and neither has he. I wish I had someone who could tell me more. I do have someone I talk to but his experience is a lot different and I know everyone does have different experiences. Still, this man has helped us above and beyond and has gone the extra mile and then some to help us with the questions we have. I'm very grateful to him and don't know what we'd do without his advice and help, but I would like to hear different opinions. On top of everything else, my brother got pneumonia after having this VNS put in and was hospitalized for several days. Hospitals are nasty places and they won't clean them up for some reason. They won't make sure the germs are all killed.
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 had the vns implanted in 2001 had pain so bad in neck and chest had it turned off then in 2003 my box came out of its place in my chest and it pulled on my wire a bit so i went and had surgery right as free that to remove the box wire still in neck as they cant be removed since then my neck hurts all the time if i move a certain way if i yawn to much or to big wire gets stuck and i have to wait for it to release so i can close my mouth. I cant do alot of dancing or exercise as my neck will hurt so bad i have to lay down. If i sit up straight for long periods my neck hurts so bad i have to lay down or put a neck brace on for it to relax cause it gets stiff and throbbing pain. After 15 years of complaining to doctors a nice doctor who listened and checked everything found that now i have deterioration on the opposite side of my neck after having many x-rays from so many providers and i went to physical therapy to try to get relief from The pain and they say i dont know what you should do about that. It has been very annoying and irritating for the last 15yrs and it didnt take away my seizures eaither. As of last month i lost my great doctor and trying to find a good one who listens again but so far nothing, as they look at me like im crazy for the pain i say i have.

I have had vns for years now. After the surgery you are sore for a while but the neck scar is barely visible in my case. The chest one is obvious but not dreadful. I used to be able to time an egg by the device. But I hardly notice it anymore. Apart from when its triggered with the magnet to double the voltage temporarily. Feels weird kinda tight like some electric worm or something when triggered. Makes you cough. Doesnt work for everyone. Some people it doesn't help at all but with others it helps alot, personally its simply reduced the severity of my seizures when coupled with my meds. Hope this helps :-)

I'll bee 55 in June of 2017. I had Epilepsy since
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.

I have a 16yrs old daughter she got the vns when she was 3yrs old they never told me i could not remove it and said that it will stop her seizures well she still having seizures and i had it turn off because i didn't see the difference in her seizures and it had her coughing all the time and i always wounder did it hurt her because she can't talk but it seem like every one post it hurts my heart is heavy with the thought of she hurting and can't tell me doctors will sell you a dream but never the truth i really want to know is there anything the doctors do when yall tell them it hurts.

I don’t have the magnets for my family I don’t like it anyway but only someone else to do for me
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