My VNS Journal

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Sooo, yesterday, while trying to get one more tennis drill in before surgery, I fell and broke my ankle. Luckily, I don't need surgery so I was able to go forward with my VNS. Surgery was a breeze. So far VNS recovery is going well and MUCH less painful than my ankle�� A bit sore and hoarse. I'm on the lowest setting until I go to the neuro on Feb 2. It does feel weird, but I'll get used to it. The biggest issue is my armpits are already sore from my crutches and being sore in my chest makes it worse. I'll check in a few days to let you know my progress.
Love Ya'll
Karen
 

Nakamova

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Sending you wishes for speedy healing all around...
 
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Taking off bandages today. I'm going to start using walker because my crutches are pulling on my incision. Yuck!��
 

Nakamova

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If you can, lie down whenever possible with the leg elevated above your heart. That will help minimize swelling in the broken ankle.
 
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Elevating as I type. Been drinking hot liquids last night and all morning. My hoarseness is almost completely gone! Also barely notice my VNS activations now!
 

valeriedl

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My hoarseness is almost completely gone! Also barely notice my VNS activations now!
After a few days you probably won't even notice it at all. Any time the settings are increased you might notice it again for a day or two but after that you probably won't feel it at all again.

Good luck with the ankle, hope it doesn't take long to heal up!
 
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arnie

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I don't know if this will happen to you, but shortly after getting the VNS activated my appetite changed some. I felt less hungry, ate less, and developed a craving for soup! I've always liked soup OK, but never really had that craving. I've read that VNS can affect the hunger sensations, but not that it can make you desire a certain food. It will be interesting to see if anything like that happens to you.

Also, is the magnet you get still that great big thing that fastens around your wrist with an ugly velcro band? I came up with some alternatives that are much smaller, more comfortable and less obtrusive. I asked the Cyberonics rep about it and he said that as long as the magnet activates the generator when you swipe it, it really doesn't matter what magnet you use. I used one of the smallish ones that come with bicycle computers. Normal fridge magnets aren't strong enough. I made one that I could wear around my neck on a cord, and another that went on a velcro and nylon watchband like you would use on a sport watch. You might also want to be aware that the magnet may set off the anti-theft things they have at the door of lots of stores. Sorry to hear about your ankle! Get well!
 

Cint

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I don't know if this will happen to you, but shortly after getting the VNS activated my appetite changed some. I felt less hungry, ate less, and developed a craving for soup! I've always liked soup OK, but never really had that craving. I've read that VNS can affect the hunger sensations, but not that it can make you desire a certain food. It will be interesting to see if anything like that happens to you.
:ponder: I've had three VNS surgeries and after having it activated, none have ever effected my appetite. Anti-epilepsy drugs definitely have effected my appetite.

arnie said:
Also, is the magnet you get still that great big thing that fastens around your wrist with an ugly velcro band? I came up with some alternatives that are much smaller, more comfortable and less obtrusive. I asked the Cyberonics rep about it and he said that as long as the magnet activates the generator when you swipe it, it really doesn't matter what magnet you use. I used one of the smallish ones that come with bicycle computers. Normal fridge magnets aren't strong enough. I made one that I could wear around my neck on a cord, and another that went on a velcro and nylon watchband like you would use on a sport watch. You might also want to be aware that the magnet may set off the anti-theft things they have at the door of lots of stores.
My magnet has never set off the anti-theft warnings at stores and I use the magnet that came with surgery. And I purchased some colorful, cheap wristbands and attached the magnet to one of them. I usually don't wear the ugly thing. I just keep it in my purse and have quick access when/if I need it. In the summer, I keep it in my pocket.
 

valeriedl

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I don't know if this will happen to you, but shortly after getting the VNS activated my appetite changed some.
I never noticed any change in my appetite after getting my VNS.

I made one that I could wear around my neck on a cord.
When you keep your magnet around your neck make sure it isn't close to the VNS in your chest because it can set it off. I was having problems about a year ago and I thought it might be do to my VNS. My neuro told me to tape my magnet over the VNS in my chest because it would stop it from turning on until I could get in to see him in a week. I did that but didn't have the magnet taped on very securely and it was moving back and forth turning the VNS on and off again all the time. I got VERY sick and was throwing up because of it.

You might also want to be aware that the magnet may set off the anti-theft things they have at the door of lots of stores.
I've never had any problem with the VNS setting off any sort of anti-theft device. I've gone through metal detectors that take a picture of your body and no one's ever asked me what it was.

One thing that you need to be careful of is not to let the magnet get close to any batteries, cell phones, computers, TVs and things like that. It can mess them up. I think my neuro told me to keep them at least 4 inches away.
 

gymrat827

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I have a VNS, have had it for 2.3 yrs.

It has not stopped my seizures, but have eased & brought them down quite a bit. Some light aura's or mini seizures are now just a short body buzz that runs from your head to your toes.


Ones that i know are coming, can be stopped or reduced down to pretty much nothing. If i am going to have a grand mal, i am going to have one, its not stopping that.

But ill be in and out of the ER, like in 90 min.

The biggest issue i have from the VNS is my voice, i work in sales and am unable to talk for longer then 45 seconds without my voice dying out and I start to sound like the godfather from the older movies. Drinking water does not help, just taking a break from speaking is the only thing.......I have to stop for about 3-4 min, then it will come back.
 

zombelina

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Doing awesome, feeling awesome. VNS is a life changer❤
I'm so glad it's gone well for you. I would love to hear more details if you happen to have a minute to share - Have you had any side effects? How much improvement in seizure control are you seeing? Thank you :)
 
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Sure. I do have a little bit of a loss off breath after they increase the frequency. It gets better with time. I had mine turned up 4 times and am now at a therapeutic level. I only take 1 piggy back medication and it is onfi, which has little side effects. I have had a few partials and some auras but the benefits dramatically outweigh the struggles! I have also re dedicated myself to living the most positive and healthy lifestyle I can. I truly believe that these steps have helped my mind as well. I try to stay in natural light, exercise, eat healthy, sleep, and stay clear of stressful people and situations.
 

zombelina

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Sure. I do have a little bit of a loss off breath after they increase the frequency. It gets better with time. I had mine turned up 4 times and am now at a therapeutic level. I only take 1 piggy back medication and it is onfi, which has little side effects. I have had a few partials and some auras but the benefits dramatically outweigh the struggles! I have also re dedicated myself to living the most positive and healthy lifestyle I can. I truly believe that these steps have helped my mind as well. I try to stay in natural light, exercise, eat healthy, sleep, and stay clear of stressful people and situations.
Thanks so much for the info. I'm glad the VNS has helped you along with your lifestyle changes.
 

zombelina

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I feel the same way.
Even though I still have the seizures I don't have nearly as many.
At least I can somewhat function now.
Topcat, do you have any side effects from the VNS? I am glad to hear it's been helpful to you!
 

Topcat

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Other than a hoarse voice not really.
My neurologist is slowly but surely setting my VNS higher. At 1st I have some problems , I was going to type in breathing, but that's not quite right. I don't know how to put it but I but it just seems like I can't catch my breath. Like from being winded after hard exercise or something. But it is very, very minor and goes away once I get used to the setting.
My VNS was set up less than a week ago and when I use the magnet routinely (not during a seizure) i can really feel a stabbing type feeling 3 seconds after I use the magnet. I am getting used to that. It is normal (for me) after the VNS has been set up higher.
 

zombelina

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Other than a hoarse voice not really.
My neurologist is slowly but surely setting my VNS higher. At 1st I have some problems , I was going to type in breathing, but that's not quite right. I don't know how to put it but I but it just seems like I can't catch my breath. Like from being winded after hard exercise or something. But it is very, very minor and goes away once I get used to the setting.
My VNS was set up less than a week ago and when I use the magnet routinely (not during a seizure) i can really feel a stabbing type feeling 3 seconds after I use the magnet. I am getting used to that. It is normal (for me) after the VNS has been set up higher.
Thank you. I'm glad the side effects seem to be temporary for you.
 
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