my vns experience

arnie

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The only change in meds was increasing my lamictal from 400 to 650 and taking it 4 times a day instead of 2. The timing didn't really correlate with the hunger stuff so I don't think that's it. I just need to watch what and how much I eat, and try to get a little more exercise. We've had an incredibly warm and dry and mild winter here in the west (unlike those of you in the frozen east) so I don't even have the excuse of horrible weather for not getting outside some.

As far as the appetite thing and VNS, there is a definite correlation. If you Google "vns and weight loss" you will find lots of links to the research on it.

Carry on!
 

arnie

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Just an update here because something interesting and kind of scary happened yesterday. I have mentioned before that it's been really easy to see my vns generator and the leads that go up to my vagus nerve. Well, yesterday morning when I was shaving I noticed that there were three spherical lumps on my neck, right by where the leads join the nerve. They were a little smaller than a marble and felt pretty hard. It kind of freaked me out so I called the surgeon's office. The PA there told me that they use three plastic clamps to somehow keep the lead from damaging the nerve. She said that normally those clamps don't show. When I asked her why mine started showing up 16 months after the surgery she said that somehow the lead must have gotten pulled or something, although I have no idea how that would have happened. She said it was nothing to worry about, so I guess I won't worry, but it was still kind of scary. I imagine that they will always be visible unless something else happens to make them go away. Has anyone else ever had this occur?

(Also, I just passed the 10-month-seizure-free mark!)
 

Nakamova

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I can imagine that would be startling. It's a good thing you're not paranoid, otherwise you might think the CIA was involved...

Congrats on the 10-month milestone!
 

arnie

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I can imagine that would be startling. It's a good thing you're not paranoid, otherwise you might think the CIA was involved...

Congrats on the 10-month milestone!
Actually, it was probably space aliens! They have cleverly implanted some sort of extraterrestrial device. I will let you know what it does if I can figure it out!

The 10-month milestone feels wonderful. I almost feel like I don't have epilepsy any more, but I know I am just a few missed meds away from having another seizure.
 

arnie

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I had an appointment a week or so ago so I could talk to the doc about my sleep apnea. I told her I had not had a problem with that (that I knew of) until after I had had the VNS activated. She didn't know what a VNS was. Had never heard of one. I have to say that I wasn't really surprised since so many docs know so little about epilepsy. A general surgeon I talked to the other day when he came into the bike shop noticed the scar and the two bumps on my neck and asked about them. I told him it was VNS. He had heard about them but pretty much only in the context of depression. When I told him I had epilepsy he commented that I must be on pheonobarb and dilantin. Just another example of how even the medical profession is unaware of current epilepsy-related stuff. Anyhow, I have an appt. to talk with a pulmonologist about the sleep apnea and see if I need a sleep study. It might be kind of interesting. I'll let y'all know.

Carry on!
 

valeriedl

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Being able to see your VNS has to have to do with the surgeon who put it in. And he must not have done a very good job.

I've been skinny and fat since I've had mine and I've never been able to see any part of it except for the bump on my chest. Unless you are skin and bones I can't imagine that there would be any way you'd be to see any part of it.

I don't think that I've ever had problems sleeping since I've gotten it.
 

arnie

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I guess the VNS just wasn't for me. I'm nowhere near skin and bones (5 10 and 175 lbs) but the lead on my neck seems to be more visible than ever, especially if I tilt my head to the right, and those new bumps are kind of weird. The lead seems to be about the size of the cord that's on a cell phone charger. I think I will see if the surgeon or his nurse or PA can just take a quick look at it.

Strange stuff. I haven't heard of anyone else having that issue. Maybe I should call the Cyberonics nurse and see what she says . . .
 

valeriedl

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I would defiantly call Cyberonics and let them know about it. It's something that they need to be told.

My neuro told me that the only part of the VNS that you would be able to 'see' would be the bump in my chest and it would be covered by skin, which it is. He never even warned me there could be a possibility that any part of the VNS would be visible.
 

arnie

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HI all! Just a couple of quick updates here: First, I saw a PA at my surgeon's office and she said that the three lumps on my neck and the more visible lead are probably the result of calcium buildup around those objects. She said that it happens sometimes, is nothing to worry about and probably won't get any bigger. She also said that the generator and leads could be removed, but I don't think I will go for that,

Second. It's been just over a year now that I have had NO SEIZURES!! Not one! :) I can hardly believe it, and I almost don't feel like I have epilepsy any more. I would really encourage others to do the Seizure-Tracker and try my four-time-a-day dosing to see if that makes a difference for you.

Cheers! Onward!
 

masterjen

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Congratulations on over a year seizure free, arnie. That is fantastic, and speaks volumes toward self-advocacy (to one's doctor) in regards to medication. We all need to do our own research, and unless a dose or dosing method is known to be dangerous, it is worth a try.
 

arnie

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Long time, no see! 2 1/2 years with zero seizures, but NOT thanks to the VNS!!!! (which, as you know if you've read the above, was a total failure for me. Worse than that, I have developed sleep apnea. It's kind of hard to say when it started, but I've had to use a CPAP machine for about a year now. In looking at everything it seems that the VNS might have done some damage to my vagus nerve. One of the reasons I couldn't use it was that every time it switched on when I was awake I had trouble breathing, and when I was asleep I made horrible groaning noises. Except for my age and gender (59 yo male) I have no predisposing factors for sleep apnea. I don't like the CPAP, but it keeps my apnea fairly well controlled. I have an AHI of around 3 when I am using the machine, for those of you that know about stuff like that. If you don't know and are interested it's easy to ask Dr. Google).

This has probably already been discussed, but I just got a copy of the book "The Danger Within Us" by Jeanne Lenzer. Among other things it has a lot of things to say about the VNS. They are not good things. It's a good read, and probably should be read if your's thinking of getting a VNS.

Cheers!

WOOPS! I've been seizure-free for 3 1/2 years, not 2 1/2!
 
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Nakamova

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Thanks for the update arnie! Good to hear that you are seizure-free. Sorry to hear about the apnea, what an unpleasant development.

You might want to start a new thread about the book -- I don't think it's been discussed here yet.
 

arnie

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Hi Bernard. Long time, no see. Thanks for the info. Looks like Dennis has been inactive for quite a while, but it was interesting reading his posts.

I'm glad I've been seizure-free for so long, and I try to believe that perhaps the failure of the VNS was partly responsible for my increased efforts to find a way to get my seizures under control by myself.

Carry on!
 
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