We turned my Vegal Nerve Stimulator up a couple of weeks ago and I started having breathing problems and sleeping problems. I called the company today and they said that it can cause breathing problems.

My Drs. office called me and I go in this evening to have it turned down. I was worried because he is leaving town for a week that he couldn't get me in but they called and he is. I have been so frustrated with what it has been doing to me lately.

When I got this put in there were many things they didn't tell me about it. I think the scariest thing about it is that I can't turn it off myself. It has to be done by a Dr.

Now if we turn it down, I won't let him turn it back up. I have fear in me now so if it don't do me any good at the lowest setting then I don't know what is next with it.

Just something else to deal with.

What I wasn't taking into consideration when I had this put in is my medical health. I would say a lot of people who have the VNS is most likely dealing with depression alone.

One thing I'm going to be an example of if this don't work is that depression doesn't cause pain and if you get rid of depression it helps or get rid of the pain. LOL

Ada

Ada, Did they consider the vegal nerve or phernic nerve being apotential issue of breathing and the vegal stim?
The close proximinty I wondered if it may affect at all?
Hope you feel better,
Di

I had to look up the Phernic nerve. It controls the diaphram and breathing.

My Immunologist I saw last week told me that it could mess with the breathing because of the diaphram being messed with.

When I got this put in I wasn't asked any questions about my medical issues but that was ok because some medical issues it wouldn't bother.

I do believe that since I have TOS that it might be a problem with the VNS.
I hadn't thought of any of this. My Dr. and I had been watching the VNS for a couple of years and I couldn't get into any trials but after losing Bill he pushed harder for me to have it. I believe he thought I wouldn't keep going on my own after losing him.

My biggest concern as I told him yesterday evening is that I have no control over turning it off or down. I do have a magnet that I can hold over it to shut it off but I couldn't wear it for 24 hours at a time or hold it that long for weeks. It just hit me yesterday to turn it back down. He was going out of town this week and I was so paniced that I was thinking if he couldn't get me in I was going to have him shut it off when he got back. As always he came through for me and he does want me to keep trying it longer.

I'm going to keep it hooked up for now. When I called the company they told me that there was a way he could turn one part up without the part that might be messing with my breathing so he's going to call them about that.

I have seen some difference with it. I have actually lost 7 lbs because of it. They said people loss weight with it in because it helps with the stress and anxiety and keeps a person from overeating. It has helped those two issues. As far as the depression, it's not there yet but as I said, I am not going to give up on it right now.

I have too many people around here watching me and what it does for me and I don't want to let them down. I want to give it the best chance I can for others that I would like see get it if they can.

Thanks for the support DiMarie. As always you have become one of my greatest friends since I have been on here. You are the best.

Ada

Oh , I hope they can get it adjusted for you soon. That will be great if they can make specific adjustments like they say.

My husband has had a VNS for over 5 years for epilepsy. It was a miracle for him. No more seizures. I asked him about the breathing issue to see if it would help with what you're going through. For him when it goes off it affects his vocal cords(the wire runs right next to it) and he said that's where he feels the constriction.
It did take him awhile to get used to and even recently he taped a magnet to his chest to turn it off for a week because he had a bad cold and it was irritating going off with the cough he had. After having it off he had to ease back into having it back on again and get used to it going off all over again. It took a few days of turning it off and on again with the magnet but now back to normal.
We've been following the research since he got his into it's use for depression so I hope it can work out for you and help
Jeanne

One reason I didn't want to put the magnet up there is that if I kept it off any length of time, I was afraid of the same thing. I wouldn't have been able to let it turn back on.

Did it help his depression any? I hope so.

I believe that it is going to be a major thing for depression before long if it works for everyone. The man that helped me and my Dr. with mine said they had only seen one person it didn't help.

Thanks for the info.
Ada

Ada
My husband has the VNS for seizures the depression he had was related to living with the seizures. Now he is seizure free and able to do so many things he couldn't before.
So as far as the depression goes I really can't say from experience but the research I've seen is extremely positive, so I hope they can find the right setting for you
Jeanne