my vns experience

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I went to my neuro today for my VNS appointment, witch is every four months. I'm on my second one, had the first implanted in 2007 which I've probably said on here.

I have been having a lot more seizures than I normally do which is around 8 a month. He asked if I wanted to adjust the settings up .25 more. I told him I know that I was having more seizures because of my grandma's death. I said that I'd like to wait till my next appointment to see what's going on and adjust it then if we thought it needed to be.

Right now I'm on 3.00, on for 21 seconds (I think that's what he said I have trouble understanding him at times) and off for 30. I'm also on medication.

I know it took a good while for be to find the right settings to help with my seizures. I had to work my way up slowly to get there. It hasn't stopped them but greatly decreased them and they aren't as bad. When the battery died in the first one I could tell because I began having more seizures.

At first the only thing that I had problems with was the tingling in my throat, it may have lasted for a week then I wouldn't notice it. Now if he adjusts it I only notice the tingle for a few hours, if even that long. Now in general the only problem that I have is shortness in breath.

I wish you were having some benefit from it.
 
Hi all. I just thought I would give a quick update. It's been about 7 weeks since my VNS was turned off, and I have had no seizures since then, which I am sure is because of the medication changes I made. As I've said earlier in this thread, the VNS was giving me lots of unpleasant side effects, and it was on such a low setting that it almost certainly was not influencing my seizure activity. It was very intrusive on my life, however.

Anyhow, I'm glad to have been seizure free and side-effect free for so long. It's a bit depressing to think that I will have this device in my chest for the rest of my life, but I guess that's the way it goes. It's a bit uncomfortable occasionally, especially when I use the seat belt in certain cars. The belt goes right over the top of the device and is irritating. I can also feel it when I move in certain ways, and it seems that if lift my arms over my head there can be a small vibration sort of feeling from where the lead is placed. It also shows under my skin cuz I don't have a lot of body fat. That's a minor thing, but it is a reminder, nonetheless. We always have reminders of epilepsy, even if it's only to remember to take our meds at the right times. The vns generator feels like I have a tattoo which I got and then regretted a while later but now there is no way to remove it. (I don't have any tattoos, by the way, but I can imagine how it might be!)

Well, lots of work to do, even though I don't feel like working today. I need a vacation but can't take one because of work and my animals who need me. Especially my crow. Life goes on!

Onward and upward!
 
Arnie, I'm so sorry that you had to undergo the implant surgery for naught. I wonder if eventually they'll figure out a way to make the VNS removable.

But it's terrific that you've found a way to improve your seizure control with the meds, and i hope that you're heading towards full seizure control.
 
arnie said:
Hi all. I just thought I would give a quick update. It's been about 7 weeks since my VNS was turned off, and I have had no seizures since then, which I am sure is because of the medication changes I made. As I've said earlier in this thread, the VNS was giving me lots of unpleasant side effects, and it was on such a low setting that it almost certainly was not influencing my seizure activity. It was very intrusive on my life, however.

Anyhow, I'm glad to have been seizure free and side-effect free for so long. It's a bit depressing to think that I will have this device in my chest for the rest of my life, but I guess that's the way it goes.
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Sorry the VNS didn't work for you, Arnie. But something I do not understand is why in the world didn't your neuro or epileptologist try working with the meds in the first place? The VNS was the last resort for me, after trying so many meds and going all the way up to the max dosage. None of them worked for me. Now you know how I feel about having the very invasive brain surgery and having the unpleasant side effects of that for the rest of my life. And it didn't work. Very depressing!!!:(
 
Most importantly, so glad you've had a vacation from your seizures for a few weeks. Very happy for you on that account. It seems so often, with any chronic disease that has decided to take up residence in our body, we must become our own best friend, advocate, and physician. That is not to say we should fly solo, but we do need to be an equal partner in the treatment/management process. Sounds like you are doing/being just that. Say "Hi" to Socrates for me.

Susan/aka Bentwanderer
 
Sorry to hear that the VNS hasn't done much for you Annie. I am happy to hear that you have been relatively seizure and side effect free since turning the VNS off and changing meds! That's awesome news! I do wonder, out of curiosity, if a C-pap machine would have helped your sleep apenia (or anyone else else who has both a VNS and side effect of sleep apnea). While it certainly isn't any fun to have it remain in, a positive is that it is there if needed in the future. One never knows what the future holds and the VNS might be needed or even save your life (imho). Plus, you wouldn't have to go through another surgery to have one implanted again.

I recall you asking about my settings before, so I will put them here for everyone. I am at 1.5ma for 30 seconds and off for 3 minutes. Magnet Mode is 1.75ma for 60 seconds. I still have some discomfort at times when on and using the magnet really hurts the first swipe. That seems to be due to the muscles in the left side of my neck getting really tight (can really see it when using the magnet). I also continue to have vocalizations issues and occasional swallowing issues. Over all though, it has dropped my seizures significantly, especially when pared with Vimpat (replaced Trileptal). I am off Topomax 1 month now with no negative issues!

Keep up the good fight!
 
Thanks for the support, guys. Cint, I am really fed up with my doctors. My previous neurologist who I had for maybe 15 years tried me on a few meds (keppra, zonegran and trileptal) after I had been on dilantin for years and was on lamictal at the time. None of the meds ever kept me seizure free, and the three mentioned above had awful side-effects. Neither of the docs ever said anything about changing the frequency that I took the meds to see if that would help cut back on the side-effects and let me get to a higher dose which would be more therapeutic. It seems like such a simple ting to do, but for some reason they just didn't have that in their bags of tricks.

Oh well. Live and learn, I guess . . .

@bentwanderer: Socrates and the cats say hello. I hope you guys had a good rest of your trip!
 
It's been just about four months now since the vns has been shut off. (Actually, they don't really turn it off; it's still set to cycle at regular intervals but the current set to zero. Seems odd to have it like that, doesn't it?) I can see the device and the lead when I have my shirt off, but aside from the occasional discomfort when something presses on the spot where the generator is, or if I stretch in certain ways, the only lingering side effect seems to be that I have apnea when I sleep on my back, especially in my recliner. That's an annoyance because I like to take a nap there from time to time, and I mostly can't any more. At night in bed I also snore when I'm on my back, and possibly have apnea as well, although the snoring usually wakes my wife up enough that she will kick me so I wake up and turn onto my side. I can't know for sure, but it seems that the snoring and apnea started after I got the vns, and I'm wondering if there is something about the lead in my neck, like pressure on the nerve when I am in a certain position, that is the cause.

On the positive side, I've had no seizures since June 2nd! :) I still take my lamictal four times a day and am really careful about taking it on time. The few times that I have been late on a dose, and the couple times I've missed a dose altogether, have been pretty scary.

Cheers!
 
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Congratulations on nearing 4 months seizure free!!
I do hope one day the docs come up with a way to safely remove a VNS.
 
It's odd that you can physically see the VNS in your body. Can anyone else? I've had mine for over 7 years now and I've never been able to see any of it, even when it was first put in.

The only thing that I can see now are the scars from the surgery and a bump on my chest where the VNS is.
 
valeriedl said:
It's odd that you can physically see the VNS in your body. Can anyone else? I've had mine for over 7 years now and I've never been able to see any of it, even when it was first put in.

The only thing that I can see now are the scars from the surgery and a bump on my chest where the VNS is.
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I guess it's at least partly because I don't have a lot of body fat. (I'm not a skeleton, or anything, just a healthy weight.) I don't know if surgeons implant them differently so they are farther in or closer to the surface, but mine is really visible, making a generator-shaped lump which protrudes probably 3 or 4 mm. (The actual device, of course, is under the skin.) The lead is really easy to see, too, from the generator clear up to where it joins the vagus nerve, and easy to feel, even under a shirt.

I would be interested to know, as well, if anyone else can see theirs.
 
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I consider myself a healthy weight too. It has fluctuated through the years since I've had the VNS but I've never gone to the point of being so fat that I can't fit in a chair or looked like a skeleton either. I've never been able to see it at any of these times.

The bump on my chest is more visible now because I had to have a new battery put in the VNS a few years ago and I think it's only because there is more scar tissue on top of the old scar tissue now. My breast has always sagged a little because they had to cut into the muscle to put the VNS in.
 
My "bump" isn't even related to the scar tissue. There is one scar about an inch and a half long where they opened me up to slip the thing in, and that's it for my chest as far as scars go. Can you see the lead at all, Valerie? Mine seems to be about the diameter of one of those little straws they have in juice boxes, snaking right on up from the generator to my neck!

Anyhow, I guess for whatever combination of reasons the vns and I just didn't get along. In the few months it was activated I'll bet that I felt it 90% of the time when it kicked on, except when I was asleep. Of course then my wife heard me groaning and not breathing right, so that woke her up and she would kick me so I could get up and tape the magnet on to shut the silly thing off. Even now that it's deactivated I can see it and feel it much of the time, including every time I take a shower, move a certain way, or put the seatbelt on in my truck. I have read about people who pretty much forget it's there and can't even tell when the battery has worn down until they start having seizures again. If the battery in mine had gone dead I would have known in 5 minutes or less!
Oh well. Such is life. As I like to say sometimes, this is most definitely a first-world problem, right? :) I'm hopeful that this thread has been helpful to others in their own decision-making regarding vns as a treatment option. I will be seeing my epileptologist again in a couple of weeks so I will let y'all know what she says. I guess she pretty much can't argue with 4 seizure-free months! Yay!

Carry on!
 
I can't see any part of the VNS at all. There is no metal visible on my neck, where it runs up my neck or chest. As I said the only thing that you can see are the scars from where the surgery was done, one on my neck and the other on my chest. The one on my neck is about an inch long and the one on my chest is about an inch and a half long now. Before I had the second surgery it was shorter than that, maybe by a half inch.

The scar on my neck is barely even visible. It looks more like a little wrinkle. I even forgot it was there till you mentioned it. The 'bump' from the scar tissue rose up a little more after the second surgery and it's just where the scar is. You could always see the scar on my chest but it became more visible after the second surgery.

I have no pain at all anywhere that the VNS is. I can wear a shirt with a tight neck, a heavy coat and even a seat belt and don't feel a thing. My cat will even walk across my chest and step right on it or lay down around my neck and it doesn't hurt. And he's a pretty big boy too, not just a little kitten. Hope you don't think I'm goofy for letting my cat do anything he wants to on me!

The only time that I would feel anything from it was when the settings were increased. I'd have what I called a 'tickle' in my throat. I'd get used to it and it would go away in a few hours or at the longest a day or two. If I'm not having a seizure an use the magnet I'll feel that 'tickle' but it's a very strong one that will make me cough. I'm one of those people that pretty much forgot it was there in general unless I had to use it. I didn't know it had stopped working until my battery had gone dead and started having more seizures.

My husband snores so bad that we had to start sleeping in separate bedrooms because he was keeping me awake so I'm not really sure if I snore. He's never said that he's heard me if I go to bed before him, he'd be able to hear me in my bedroom if I did. He has said that I will snore sometimes if I'm sleeping on the couch but it's not very loud. I think I did read that one of the side effects of the VNS is snoring.

I the VNS is like almost anything else that you can do to see if it helps with your seizures, medicines and thing like that. You don't know if it's going to work until you try it.

Hope things go well with the epileptologist and congrats on the 4 months free!
 
HI Valerie, I'm really glad you're one of the many people that is working for. I know what you mean about that tickle in your throat. I had that a little when it was first turned on, and it sort of diminished over time, but it was replaced by a pain in my throat that extended up to my ear, and later down into my chest wall. It was actual pain, kind of like having a bad earache when it hurts clear up into your ear when you swallow. You know?
As for the VNS itself, I certainly can't see any metal. Everything is solidly under the skin, just not very far. I wish I didn't have discomfort doing all those daily things. And finally, as to the cats, I don't think anything is too strange when it comes to cats. My two are among the most spoiled cats anywhere. They live in my bike shop and have complete run of the place. I have built them perches and runs and beds high up on the walls. They have cat trees, a radiant heater for winter, cat doors with hidey-holes built in. and perches in a sunny window. They get attention whenever they want it from my customers and from me, and they absolutely adore each other. They have it good! Cheers!
 
Wow, I think your cats are spoiled much more than mine are! Everyone laughs because I usually have more food in the buggy for my cats than I do. I always say that I'd probably starve before I'd let them.

One of my cats snores pretty bad. He's sitting behind me on the chair snoring away right now. He's woken me up at night too. I hope I don't have to make him stop sleeping with me because I don't think I'd be able to sleep in the bed without him! Do you know if they make those sleep masks that help stop snoring in cat sizes?
 
Well, I suppose a quick update is in order since it's been a few months. Because it never really worked, the VNS is still turned off (well, set for zero output, which is effectively the same as being shut off) but thanks to the med dosing schedule changes that I made back in June I haven't had a seizure now in just over 9 months. Pretty cool, eh? The spot in my chest where the VNS generator is still itches for some reason. It's only every few days that I notice the itch, but it's enough to remind me that it's there. Oh, well, life goes on, doesn't it?
If there is someone reading this who has considered getting a VNS I hope it has been a helpful thread. I still think the VNS is a good idea, but I wish the success rate were higher.
Oh yeah, there is one other thing: Shortly after it was turned on my appetite decreased quite a bit and I lost some weight, which was OK. I guess the vagus nerve affects the hunger sensation, among other things. I noticed that starting about 6 months ago I started feeling hungry a lot of the time, even if I had just eaten, and now I have gained some weight. (I've been less active during the winter than I am in the summer so that could play into it as well, I suppose.) I'm wondering if somehow the presence of the lead on my vagus nerve is causing that feeling? Maybe I will see if there's anything in the literature about that.

Onward and upward!
 
Thumbs-up for being seizure-free Arnie! It's too bad there isn't a way to remove the useless VNS so it's not a distraction.
 
Glad things are going good for you.

I've never noticed any changes in my appetite when I got my VNS. Mine is still turned on and I never noticed any changes in my appetite when the VNS settings were increased or decreased.

Have you had any changes with your meds? It was always the medicines that I was on that effected my appetite. I know there was one med that when I was on it I ate almost everything in sight, gained a TON of weight. Another med that I was on I hardly ate anything, my parents actually had to force me to eat because I would't. Lost a ton of weight when I was on that. I don't remember which meds they were though.
 
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