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vns therapy side effects

I joined this site yesterday and I'm interesting in touching base with anyone who has a vns. In particular I would like to find out if anyone has experienced any unusual side effects not mentioned by Cyberonics. I occasionally experience 'tingling' in my neck and shoulder - this is actually quite unpleasant and it has been severe enough to warrant having my vns temporarily turned off. At one point last summer it felt like I was being repeatedly stung by a bee or something like that (I'm not sure exactly how to describe it). Cyberonics claims that no one has ever mentioned anything similar to this. I have been quite happy with my vns - it has helped stop many seizures once they have started, which has meant fewer trips to the ER but if this problem became really severe again I wouldn't be able to keep my vns turned on. Please let me know if you have experienced anything like this - I would like to know - Cyberonics makes it sound like I'm crazy or something. Thanks!!!

Comments

Re: vns therapy side effects

I am going to be leaving this particular post because as of two weeks ago a decision has been made to remove the VNS. Not because of the bad reaction I have been getting from it but due to the fact, I no longer need it. We are still in preliminary discussion on shut down and removal time but it has already been decided that this will take place.

Suebear

Re: vns therapy side effects

I have a VNS but it was turned off because it didn't help. However, I had no unusual side effects when it was on.

I just got my vns 3 weeks ago

I just got my vns 3 weeks ago and honestly I feel a shocking pain in my head idk if that’s just the vns stopping one of the seizures or if that’s one of the side effects idk I need more information on this thing please someone help me with this 

Re: vns therapy side effects

I have a VNS but it was turned off because it didn't help. However, I had no unusual side effects when it was on.

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Re: vns therapy side effects

  hi,

  I had the vns since about 1999.  I had the battery replaced twice.  Yesterday I had it turned off.  Before the vns my seizures were complex-partial and petit mal with and aura with them always.  After the implant, my seizures had gotten worst over the years, to where I was having drop seizures with no warning.  I ended up having to get a seizure helmet, because of them.  I would fall backwards hitting my head.  Four times I have ended up with staples in my head, along with other injuries from splitting my ear and fractured ribs and other bruises.   Mainly, though it was head injuries.  I figured even if I have more complex partials with the vns shut off, I don't injure myself like I do with the drop seizures.   It might not effect everyone that way, but looking up on the internet, I found where it caused a lot of drop seizures not related to epilepsy.  I found a lot of similar cases on the vns board on-line.   I don't mean to scare you, but rather caution you incase something like that happens.   You might try going on there, because they are people who have the vns.  So, they can tell you from experience what others are only guessing at.   Hope things get better with you.   

 

I had mine put in three days

I had mine put in three days ago and my chest is getting constant "bee stings" but my neck feels great.They are yet to turn mine on, however.Minor issue, I have a wheezing cough and it really hurts to laugh.That's pretty much all I can think of, really.

I have the vns therapy system

I have the vns therapy system and I look like freaking Frankenstein. Can I have a normal life ? No! If I want to go somewhere I have to cover with a bandage so I will be keeping Johnson and Johnson in business. I don't not look like any of those ppl in the videos. I look like a freak. Thanks to my doctor. I have a big slit across my throat like I was robbed or something. I have a big slash access my chest and both are jagged stitches like a child sewed me up. I think I should get a lawyer. It may save me from fewer seizures which is a bonus, no going on vacations out in the sun no none of that. I have an axiety disorder and this just made it worse. I wish I never have got talked into getting this done.

Re: vns therapy side effects

I too suffer from tingling in my neck , sholder and jaw. I had my VNS turned off and I'm still experiencing these uncomfortable symptoms.  Sometimes I feel like the wires are too tight.I'v had my VNS for 16 months and I had it turned off after 13 months. I also experienced breathing problems that seemed to get worse as time went on no matter what setting it was on. I'm athletic and I do triathlons and well as 1/2 marathons and it was really affecting my training. Even when I'd use the magnet to turn it off it didn't make a difference.

 I have complained and the response I recieved was no one else seems to have those problems. I am considering having the pace maker part removed.

Stayc

I had my stimulator inserted

I had my stimulator inserted June 2nd 2015. I have not had any major concerns accept that 1 my voice is jacked up for over 2 years of this i had imagined I'd be over this by now. And 2 I noticed that when I yawn it seems as if the tube catches in my neck. I mean I don't how else to explain it. Thirdly I still have my petit mals and grand mals as usual. Now mind you my magnet works well IF someone is around to catch me....lol

Re: vns therapy side effects

As for this test, it can be done. Part of the problem are two things, one being there are patients who are not in an area that can perform it and the other issue is there are administrators or health workers who do not know the protocol. There are some patients who cannot manage this test because of their health which is unfortunate. Because each patient is different, there is always going to be that slim chance of having this occurance. 

Here is the documentation that I have:

9.4.4. Magnetic Resonance Imaging
If you plan to have magnetic resonance imaging (MRI), make
sure your doctor has the following information:
! Magnetic resonance imaging (MRI) should not be
performed with a magnetic resonance body coil in the
transmit mode. The heat induced in the Lead by an MRI
body scan can cause injury.
If an MRI should be done, use only a transmit and receive
type of head coil. Magnetic and radiofrequency (RF) fields
produced by MRI may change the Pulse Generator settings
(change to reset parameters) or activate the device.
41
Stimulation has been shown to cause the adverse events
reported in the “Adverse Events” section of this manual.
MRI compatibility was demonstrated using a 1.5T General
Electric Signa Imager and Model 100 Pulse Generator only.
Testing on this imager as performed on a phantom indicated
that the following Pulse Generator and MRI settings can be
used safely without adverse events:
¨  Pulse Generator output programmed to 0 mA for the MRI
procedure, and afterward, retested by performing the
Lead Test diagnostics and reprogrammed to the original
settings
¨  Head coil type: transmit and receive only
¨  Static magnetic field strength: £ 2.0 tesla
¨  Specific-rate absorption (SAR): < 1.3 W/kg for a 70-kg
(154.5-lb) patient
¨  Time-varying intensity: < 10 tesla/sec
Use caution when other MRI systems are used, since adverse
events may occur because of different magnetic field
distributions.
! No scan in which the radiofrequency (RF) is transmitted
by the body coil should be done on a patient who has
the VNS Therapy System. Thus, protocols must not be
used which utilize local coils that are RF-receive only,
with RF-transmit performed by the body coil. Note that
some RF head coils are receive only, and that most other
local coils, such as knee and spinal coils, are also RFreceive
only. These coils must not be used in patients
with the VNS Therapy System.

Courtesy of www.cyberonics.com 

My grandson received his

My grandson received his vnstimulator yesterday. He is 6yo and is scheduled to go back in 2weeks to get it turned on. Is there anyone that experienced young children having this done? I would like to know their experience with this

My grandson received his

My grandson received his vnstimulator yesterday. He is 6yo and is scheduled to go back in 2weeks to get it turned on. Is there anyone that experienced young children having this done? I would like to know their experience with this

How old is your son at time

How old is your son at time of implantation 

 This info has helped me

 This info has helped me tremendously.  Bc my grandson also is 7yo. And his was implanted yesterday 8/9/18

My grandson received his

My grandson received his vnstimulator yesterday. He is 6yo and is scheduled to go back in 2weeks to get it turned on. Is there anyone that experienced young children having this done? I would like to know their experience with this

How old is your son at time

How old is your son at time of implantation 

Re: vns therapy side effects

Hello everyone,

My Beautiful daughter Mariah received the VNS in January of 2000. I was given hopes and promises of a "better life" for my child. Over the years, the frequency of the seizures and the E.R visits decreased. The problems started when her voice began to change to wrapsy. The docs said it was a normal side effect. In late August of 2009 her seizure activity increased. We went to the doctor in September and the physician said her settings were still low and there was room to increase the settings. He did. Later that day my daughter complained of hiccups and they lasted a really long time. I was told by the docs that this was a normal side effect. My daughter's hiccups lasted until the day she died- October 25, 2009.

I am devastated.

Re: vns therapy side effects

Hello everyone,

My Beautiful daughter Mariah received the VNS in January of 2000. I was given hopes and promises of a "better life" for my child. Over the years, the frequency of the seizures and the E.R visits decreased. The problems started when her voice began to change to wrapsy. The docs said it was a normal side effect. In late August of 2009 her seizure activity increased. We went to the doctor in September and the physician said her settings were still low and there was room to increase the settings. He did. Later that day my daughter complained of hiccups and they lasted a really long time. I was told by the docs that this was a normal side effect. My daughter's hiccups lasted until the day she died- October 25, 2009.

I am devastated.

Re: vns therapy side effects

How long have you had your VNS in for as I've had mine in for 4 months and only in the last week have I started experiencing very sharp pains in my neck that only last approx 2 mins and are 3-4 mins apart, my neurologist has no idea what this means is this what your pain problem is too?

Re: vns therapy side effects

How long have you had your VNS in for as I've had mine in for 4 months and only in the last week have I started experiencing very sharp pains in my neck that only last approx 2 mins and are 3-4 mins apart, my neurologist has no idea what this means is this what your pain problem is too?

Re: vns therapy side effects

How long have you had your VNS in for as I've had mine in for 4 months and only in the last week have I started experiencing very sharp pains in my neck that only last approx 2 mins and are 3-4 mins apart, my neurologist has no idea what this means is this what your pain problem is too?

Re: vns therapy side effects

How long have you had your VNS in for as I've had mine in for 4 months and only in the last week have I started experiencing very sharp pains in my neck that only last approx 2 mins and are 3-4 mins apart, my neurologist has no idea what this means is this what your pain problem is too?

Re: vns therapy side effects

Hello,

 I am so happy I found this site!  I really need some help and advice.  I am the aunt of a 16 year old and she is mentally delayed.  She has no verbal skills and cannot walk, crawl or talk or use sign language.  But she does have very severe seizers.  She has been on almost every medication her whole life and has exhaused all combos of medications, and she still has severe seizers.  The problem she has now is that all the meds make her tired and non-responsive.  She sleeps alot and is not alert.  Her doctor has recommened VNS and we are a bit scared to do this.  I read some blogs here and there seems to be a lot of pain with this.  But she cannot tell us if she hurts, so we would never know.  We dont want her in pain from this, but we dont know what else to do to help her.   This is my sisters only child and my only niece, she is so loved, we dont want her hurting, but we want her "back".  We dont want her to sleep all the time.  Do you think we should try this?  Please help!  Thank you.

I`d like to talk with some

I`d like to talk with some one that now`s the side effects . This was put into me a mouth ago . It was turned a week after it was put into me . Two week`s later my Nurologest turned it up . Seance Thursday this thing has been going off every 10 min`s . I`m a cadagory 1 Epileptic . I sure would like to some one that now`s what is going on !!!! This dam thing is driving me up the wale .... 

I`d like to talk with some

I`d like to talk with some one that now`s the side effects . This was put into me a mouth ago . It was turned a week after it was put into me . Two week`s later my Nurologest turned it up . Seance Thursday this thing has been going off every 10 min`s . I`m a cadagory 1 Epileptic . I sure would like to some one that now`s what is going on !!!! This dam thing is driving me up the wale .... 

sound`s like your going

sound`s like your going through the same hell I am . Let`s chat more about this bro . By the sound`s of your post . Your going through the same thing I am .....

Re: vns therapy side effects

My girlfriend got a VNS in early July, at first she was certain this was one of the best decisions she had made and was very happy with it other than it was extremely hard to talk. She had it turned up and get sharp pains in her chest and it made it unbearable for her to talk with it on and difficult to breath, and on top of that was not doing very much at all to help her seizures at all. She was talking to me about getting it taken out or turned off for good. I went and researched the side effects of getting it taken it out and found this thread. when i saw some of the stories on here i realized she was not alone with this and it scared both of us. On August 19th our fears came to life when friends of hers that she was staying with woke up to find her not breathing with no heartbeat. Of course an ambulence was sent and upon arriving at the hosptal had emergency surgury to remove it. Since its been removed even with the soreness she feels so much better and much less burdened and has decided not to take any more gambles with surgury. The device was either incorrectly installed or had broke but the wires were only partially wrapped around the vagus nerve and were sending shocks to her chest which eventually stopped her heart. Her neurologist as i had found out had pushed her into it and glamorized the device and all but set up the surgury for her with less than a week to consider it. This device may work for choice few people but from what ive seen and heard from other people the vns is not the best road to go down and seems to malfunction easily. If you decide to get this surgury know that it can be painful , it can completely change your life style and the device does have to potential to kill you, however rare the side effects may be so is getting struck by lightning and it happens and people that it happens to definetly don't expect it to happen. I never expected to get a phone call that my girlfriend was almost killed by a so called miracle device, if it sounds to good to be true it likely is.

Re: vns therapy side effects

Hi

I've had my VNS for almost 6 years now and yes I know what your talking about. When I first got the implant it was really bad and my doc had to make some ajustments and it made a world of difference.  It only happens to me now if I lay down with my head at a certin angle when the device goes off.....if I just move out of that position it goes away. and after my doc ajusted the VNS that feeling is not nearly as severe when it happens. :)  So my advice is talk to your doc and get that VNS ajusted until its comfortable for you.

Good luck, look me up if you need anything,

~Amanda Lynn~

Re: vns therapy side effects

I had the VNS from 2000 to 2004 when I had it turned off for shoulder surgery. I was experiencing a great deal of shortness of breath. I am physically active. I play handball, bike, run, and various other sports. The problem was making me VERY uncomfortable. When I had it turned off for the surgery it was like coming home from an agonizing trip. I was so happy with it off that I never had it turned on again.

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Re: vns therapy side effects

VNS therapy update...

It's been a long time since I've been able to connect onto the forum between daily life and other activities that are happening. At any rate, I had to give an update on what has been going on with the VNS.

1) I'm still using the VNS at this time however there have been new changes.

2) As of Oct 2011 I actually got an update to the latest version including another addition because the seizures were totally out of control -- four or five a day. Because the VNS could no longer handle my seizure activity with the settings it was best to go the next step and go with a Deep Brain Stimulator. The VNS was updated to the smaller device as the battery needed to be replaced while I was in the hospital.

3) Once we found the correct settings for the DBS the medication dosage was slowly dropped. I am now taking next to nothing. The next step we have been discussing is to begin removal of medication but we are not quite ready to do that just yet.

4) As of this month it has been a year for my DBS surgery. Not only that, the VNS device has been left at default settings so there now is consideration for what to do with that device at this time.

Oh, in the process of all the above, I had to leave my doctorate studies due to the medical surgery then due to recovery. In the end, I felt it was best to stop classes over all and focus on my health. =)

S. Elvins

My husband had VNS placed

My husband had VNS placed Sept 7 2018. In Oct started having contractions in the neck. We thought this was normal but after recent CT scan found that VNS leads had "moved" or been placed wrong. It is touching the sternocleidomastoid muscle causing pain with contraction of the muscle. LivaNova/Cyberonics manufacturer was who suggested we get in contact with the surgeon. My husband goes in for exploratory surgery next month. Hopefully thy can reposition the leads other wise will have to turn it off. He has 20 seizures average every day. Hoping repositioning.

Re: vns therapy side effects

Nancy B    THIS IS VERY IMPORTANT!!!   I have just gotten off the phone with Doug Wood who is the BRANCH CHIEF of Post Market Branch that tracks adverse events and deaths that are either linked to or caused by medical devices. He has asked me to ask each of you who has filed a Maude Report to send him your individual report #'s. If you do not know what your case number is you can log back onto the Maude Data Bases and with a little effort can find that out. He wants each indivual case number sent to him. For those of you who have been seriously injured by the vns device , or worse yet, those of you who have either lost a family member or know of someone who has, contact them and ask them if they have filed a Maude Report. If you, or they, have not done so yet, please do so immediately and send him the information. Please, people, this is vitally important. You will be possibly saving lives. His contact e-mail is: doug.wood@fda.hhs.gov  If anyone needs assistance in this, I will help any way I can. Contact me at: nancybowling@att.net 

Re: vns therapy side effects

Nancy B   I have just spoken to DOUG WOOD, who is the Branch Chief of the Postmarket Division in Washington, DC which tracks adverse events and deaths caused by medical devices. He has asked me to have each of you who have filed a Maude Report to e-mail him your actuaL REPORT NUMBER. If you did not keep this information, you can log back on to the Maude Data Base and with a little work can find that out. His e-mail address is doug.wood@fda.hhs.gov You can very well be saving lives, so please send this man your information. If anyone is having difficulty retrieving this information, e-mail me @ nancybowling@att.net and I will help you. Thankyou for doing this. You might very well be making the difference that saves someones' life.

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Re: vns therapy side effects

I have had uncontrolled seizures for almost eight years after a TBI. I am on four medications now and my doctor keeps pushing the VNS on me, telling me that is my only option. Your posts have opened my eyes.

 I was never enthusiastic about this "therapy" to begin with, but now I am terrified.

 I send out my deepest condolences to everyone who has lost someone or who has lost part of themselves because of this device. Thank you to everyone that helped me become aware of this information, if it hadn't been for you I never would have known about these risks. My doctor sure hadn't told me about them....

Re: vns therapy side effects

Hello,

Could it be the level on which the vns is set? Mine has worked fine and even has stopped a few seizures. I know the last time I had my doctor adjust the setting I couldn't stand the feeling of the new level and asked him to go back. It's standard that he increases the level. I'm not sure what he'll do next but this for me is fine now.

Hope all goes well

I had my surgery a month ago

I had my surgery a month ago and with the help of mederma from the beginning, my chest scar is barely noticeable. The neck scar isn’t reacting as quickly because it’s such delicate skin, but I used it on a skin graft on my nose that you can barely notice. It’s just worth a try to help you feel more comfortable with it. Otherwise, rock those scars!

Re: vns therapy side effects

I had this implant a year ago
I have had nothing but problems as this device was put in to help with organic headaches, Complicated migrains, Clusster headaches
I have lived with daily head pains for over 20 years, which are realted to seizures

I had not had a seizure in over 5 years before the implant nbut told this should help the daily head apins

The stimulator has caused nasua every day, Fatquie, trouble swallowing, cold sweats and it would freeze up in air condtioning
it was adjusted numerous times by my nuerologist of 17 years it was over 5 months and the doctor hasnt returned calls or emails

I was then referred to another nuerologist to have this looked at
I saew him today and when they went to shut this down
I was told there was no out put as it read zero as it was shut off already

I was shocked as I knew this thing was working just a few days ago, but have had problems with it for a year now
I asked them how is it possible that its turned off already hopw would the out put be zero

They did not know, but they turned everything off now they said

I am so confused and scared ,
The Docotor said i did not need to see him any more as I was just there to get this device turned off.

I really thought this was the hope i was looking for,
They made it sound so good and now the doctor who turned this on the one i have been seeing for 17 years is no longer on Cyberonics list either.

Do I have a leaking battery, a bad lead, a faulty device
I year of being sick to my stomach, tired all the time, sweating and I am a thin man but would sweat as a over worked person,
choking on whatever i ate at times even water.

Now today find out some how this device shut down its out put all by its self and not even told they wopuld look into the matter

Has anyone suffered as this
Thanks

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Well, after a writing

Well, after a writing exercise I signed in with Facebook and it was gone, but now I am officially here.  Anyway, I do not have the longevity with a VNS device that many here do have, with my insertion being just less than a month prior to this note.  In my case, I say thank the Lord.  My device, whether over ramped, faulty from the factory so to speak, wrongly lead inserted or a reason that I am unaware of,  is sending action occurrences throughout my entire body with such painful symptoms to my groin, stomach, back/chest , extreme penile stimulation etc that I have made four 'band-aid' pain cycle breaking  trips to the emergency rooms which gave the needed medicinal injections (thank the Lord), but whose doctors (but not all RNs) were clueless about a VNS device that was normally functioning, nevertheless an aberrant malfunctioning one.  Along with the painful symptoms and in line with the aforementioned members that mentioned pricking of the skin...I have a regular feeling of a sun burnish prickling over the entire body with an occasional bee-sting like discharge at a fingertip at times.  It does of course happen and is related directly to the VNS.  No one is wrongminded in any way to think it isn't.  If this entry is skewed in any manner I will admit that I feel intellectually up to the task but am finding, in retrospect, missives under the alleviating combinations of needed opiates I am currently taking/given in measure, that I have been not only verbose but guilty of jibberish sensibility at times.A final note:  found today but not yet connected with is a VNS Therapy case worker manager toll free number that answers questions about VNS therapy and will actually direct you to a different doctor that is outside the practice of the one that you currently may find less than helpful.  It is obviously not the only or main function but is the lifeline that I am looking to grab onto at present.  My prayer is out for all that are in any sufferance and of course for those in their aid.

Re: vns therapy side effects

I have had some very odd issues with my implant
not sure why but it has given me a upset stomach now for months as it comes and goes
its seems as maybe its due to surgery and that a lead may be pinching a nerve I have found at times i Can stop this at times if i lift a object with my left arm enough to put strain in the neck which then the nasua stops, but it comes back often and its hard to get the muscle or nerve back to the point for the upset stomach to cease

I also notice it seems as the leads may be pinching my chest as i can feel the leads at times.
the sensation of swiping the magnet is the worse its as someone is choking me and it feels as my lower jaw and teeth are burning as if some one is pushing a hot spike into my lower jaw for 15 seconds then it eases
so i do not swipe the magnet much at all.

Its been a few months since i had it adjusted and cant get ahold of my nuerologist to check this all out
I have been his patient for 17 years and the last few months he doesnt call me back or reply to my emails

When i saw him last he tested the leads and when he did that it felt like a hot poker going thru my jaw it was so bad i almost went into tears
I told him about it , he did not seem it was anything to worry about.

I had this implanted to help with whats called intractable headpains , complicated migrains and cluster headaches which have brought on untypical seizure which are produced by head pain i have suffered for 20 + years.

The head pains I describe are pains that are everyday but because of the medications i am on the pain is still everyday but only last a day now instead of day or weeks where at times i was bed ridden from the massive pain in the head.

I will try anything the medical profession to come up with to stop these head pains
It does depress me as to wake and go to bed with a headache as it never fails
I havent had one day in over 20 years where i havent had a headache, but at least the severity is not as it once was, but this was the case when they put me on a cocktail of many medications which makes my life more normal then it has been in years

I raised 5 children and a grandaughter with this condition
I attened college to get my associates degree but that was a slow process since at the time i was going thru doctors misdiagnosising me and treated me for everything but what i had.

one doctor had me beliveing I was crazy and the pain was from me thinking to much about the pain

but one knows when a migrain comes on how useless the migrain makes you then a cluster headache on top of the migrain and the stress headaches make a presesnce.
the day after recovering from a masive head pain my body is wore out as if was was hit by a car

Re: vns therapy side effects

i have always gotten severe migraines from siezure activity. the worse the activity the worse the migraine. if i have a tonic clonic siezure i get very severe migraines. migraines = nausea. i was changed to topamax as one of my siezure meds since they use that siezure drug as a migraine drug as well.

personally if my doc wasnt returning my calls , its time to fire him and get a new doc, go to an epi specialist since you do have siezure activity causing your migraines. they are more skilled and more simpaphtic. any doc that doesnt take your pain serious ly, is not a good doc. my epi doc will return my calls promptly on the same day, usualy with in a hour. good luck on your doc search

God Bless,

banffgirl

life is fragile, handle with prayer.

Re: vns therapy side effects

Hi Marcy,

I understand your concerns. I had many of my own before I had the surgery. Being that she cant make the call for herself, talk about the pros and cons with her doctor. If you are talking about pain with the surgery, the pain at the incision site is very intense the first day but they give you strong enough pain killers to stop it. it does get much better every day after that. the pain killers they give you does take care of it though.  

the only discomfort i get now is when i am stressed and tense my neck muscles, i do have some discomfort, not pain, in the left side of my neck when it goes off, but if i just settle down and relax, then it goes away. some people do have side effects, some have no problems at all. like with anything you are going to find people that are happy with it and those that are unhappy with it.

So talk it over with the doctor and get all the info. Ask questions on anything you dont understand. Best of wishes to you and your family.   

God Bless,

Banffgirl,

I have a electric personality, my brain is self charging!

Re: vns therapy side effects

Something that I have noticed with a lot of the subjects who get this product are they should not.

In other words. Persons who had received the VNS were still experiencing uncontrolled seizures however those seizures were not breakthroughs, they were full blown. There is a difference between the two. For example, I was seizure free for seven years before mine came back which put me into a category of having breakthrough seizures and made me a candidate for the VNS surgery. 

What I am seeing now is there are some neurologists taking advantage of this surgery without considering the fact that it may not work due to VNS is not made to bring seizures to a halt. It is only made to decrease and manage their frequency. I was even told that from my neurologist and neurosurgeon before going into the OR. Lastly, VNS only works in conjunction with a medication regimine and changes will not occur immediately as it takes time for the correct settings to be made to the patient's body type and their seizure habit. For myself, it took six months to find the correct setting. Now I visit the dr every month to check up and ensure it is running correctly. I have gone from four small seizures a day to one seizure occurrance every 10 to 15 days, sometimes 20 days depending.

Regards,

S. Elvins

PS. I am studying for my Doctorate so my response time may not always be the greatest as I am busy with school work and a huge writing project.

 

 

Re: vns therapy side effects

Viv Sheets-  Did you ever have the device implanted in your niece?  I am really curious.  My son is 19 and will be having the implant put in next week.  All you read is negative, negative!  I am trying to tell him to keep an open mind.  People don't usually write about stuff when they are satisfied.  They only write to complain about things.  I hope you had it implanted in her and that things are going well.  I know we have an excellent doctor and am very hopeful that it will make it so he can come off of some of his meds!  Good luck, please let me hear from you or anyone that has something good to say. 

Re: vns therapy side effects

Hi, I just now joined this site and you may have already made a decision by now BUT it is a decision that only you can make. As a RN I have taken care of a little girl that it worked well for and she had no side effects. As a mom, my son almost died from the VNS. So, no one can make that decision for you and I know it is a hard one. We make hard decisions every day for our children and in the end you have to realize that you tried to do the best you could. Good luck and best wishes. Thea Thorne-mother of Michael:)

Re: vns therapy side effects

Nancy B   Tadybug, I am going to repeat something that I have said in a previous reply, but I think it needs repeating. Type 'Maude Data Base' into your google search bar, and when it comes up type 'death caused by Cyberonics vns device'. When that page comes up, go to the very bottom where it says 'repeat search with ommitted items included' and read some of those reports. You can also type into that very same searc bar 'serious, or lifethreatening injuries caused by Cyberonics vns device' and read those reports, again, 'with the ommitted items included'. You can also type in 'warning letters sent to Cyberonics re: vns device' and read those. My sister almost died from this device, and she will be disabled now for the rest of it BECAUSE OF THIS DEVICE. This is a very dangerous device, and yes, there will be people who sware it has helped them, but there are many others who it has either killed or mamed, You need to know ALL the facts in order to decide if that is a risk you are willing to take. Good luck in your decision.

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