Sending you both hugs on these rough days.

Hoping that things start to look up.

I haven't been around in a while. But I think about you a lot.

Donna

Dear Ada et al,

I would like to interject some information which you may or may not have considered.

First by way of brief introduction my spouse, Joyce, was one of the earliest study subjects for VNS Therapy for Depression. This December she will have had a pulse generator for about 8 years with one replacement and in her case history the results have been pretty remarkable.

I also established a website as a repository of information that I’ve garnered through the years relating to the therapy, our experiences, research and knowledge as it relates to the VNS Therapy and references to other sites and forums sharing information relating to the therapy.



I would like to make you and the readers aware there are other parameters which can be adjusted to overcome many of the encountered side-effects. It seems you have basically only discussed the amplitude settings of the device. There is also the pulse width and frequency settings which when lowered may solve some or all of the side-effects as well as the on time and off time settings.

The magnet should not damage the prosthesis and when used by the Depression patient by placing and holding directly over the prosthesis will deactivate the device. Upon removal the prosthesis will automatically reactivate and continue cycling as per the programmed parameters.

What I have also learned through the years is the fact that higher amplitudes do not necessarily constitute efficacy. I have read of a number of patients responding at lower amplitude settings so this should be taken into consideration. Until the current and ongoing dosing study is completed there are no definitive answers as to what are the proper settings.

One of the key points I seem to be learning is that time, which includes patience, may be a key factor in achieving a favorable response. I have also read and collaborate with patients that first began responding after a year or more. Once again, each individual is unique and so too there response to any treatment.

As a very, very long time support person and care giver to my spouse Joyce, we’ve learned there are no short cuts nor any guarantees and that there are some major side-effects from various treatment options. I also firmly believe one should not have to endure any pain or unusual side-effects from the VNS Therapy if one takes the time to be educated to all the parameter settings and learns to make adjustments. One need not attempt increasing amplitude on a weekly basis etc. In one of the other groups in which I participate we often discussed “the sweet spot.” Several patients found favorable responses but continued to increase amplitude and seemed to have lost the benefits only to lower the setting and regain a favorable response. In my opinion, proceed slowly, have patience and when a favorable response is achieved, “Leave well enough alone.” Even if the amplitude is set low one is obtaining therapy 24/7/365. Remember too, this is supposed to be an adjunctive therapy to ones current treatment regimen so one might consider leaving the VNS at comfortable settings and making adjustments to the primary treatment regimen.

I do hope I’ve been able share some worthwhile information.

I wish you all a Happy and Peaceful Thanksgiving and most importantly, wellness.

Thank you for this info.

I am going to run off a copy of your post and take it to my Dr. Friday. We turned my VNS up last Wed.

When we first turned mine on it seemed like it was going to help. I had it on for about a month and I was sleeping better and felt better. I had to have a surgery so we turned it off and after that it didn't seem to do a thing for me.

Also, I wanted to say on the settings. I called the company myself as did my Dr. and they told both of us that there was no other way to set it up. I talked to two different people. I will call them back though.

My pain comes from cronic pain from other illnessess and that seems to make my depression worse due to the pain from those.

I don't sleep at night and my mind is constantly racing and I am always stressed. I was this way before the VNS was put in.

Thanks again for this info.

Ada

Thanks for this info Herb. I know and my doc has told me to be patient with it and give it time. But it's frustrating especially when things keep dragging you down. We've been playing with my pulse width setting to relieve some of the breathing problems I'm having and the constant feeling of pressure in my throat when it goes off and like Ada, I can't sleep either. We haven't hit that sweet spot yet.

I don't know what this means but my settings are:

Output: .5 mA
Signal frequency: 30 Hz
Pulse width: 250
Signal on time: 30 sec
Signal off time: 5 min

Ada hang in there friend. I hope when you see you doc on Friday they can make some adjustments and it starts doing its thing.

I am going to ask my Dr. to shut the VNS off. I was going to give it until April. It will be a year April 18th and I wanted to wait that long but I don't want to anymore.

I don't like it, it's not doing me any good. At times I feel it is making me worse.

Ada

(((Ada))) I'm keeping you in my heart and in my prayers...I know you are struggling to keep it all together.

I see my Dr. today at 12. If he had not seen me, I swear I would have went to the ER to see if they would shut the thing off.

It has made me physically and mentally sick. Now that I have read stories on the VNS website about the horrors of it, I know I am not alone in dealing with the VNS side effects.

I am hoping he will be ok with turning it off. I called down yesterday and they left him a note so I am sure he knows already. He is only there part of the day today and I wasn't sure he could get me in but they did.

I hate the ideal of not being able to turn this thing off myself. After going to the ER in July and having surgery in Sept. and now dealing with the panic attacks and everything else I am dealing with this week, it makes me even more furious that we have to depend on someone else to shut it off for surgeries, ER visit's and so on. Some people might not mind this but I do.

Thank you so much for your support.
Ada

I have a Vegas Nerve Stimulator. It was implanted Nov 2005. I have Temporal Lobe Epilepsy. I also suffer from severe depression. Every person must of course decide these things for themselves and you know your own body more than anyone else. However, I feel I must share the many negative side effects I have suffered since the operation - none of which have I found in any material I was given nor was I warned by the neurologists or neurosurgeons.

The one thing I was told was that I would never sing again. This may be no big deal for most people, but my ministry is in music. I write Christian music and this was taking away my purpose in life. Still, because my problems were bringing trauma to my husband and sons, I finally decided to go through with it.

It has been the biggest mistake of my life - and I'm not talking about how it changes your voice. I have been more depressed than ever and all I do is cry. If I'm not crying I find myself yelling and not making sense. I am constantly having flashbacks of the worst moments of my life.

I don't know anything about your private life or other than brain chemistry if there are reasons for your depression, but if you've ever had any horrible memories I strongly urge you NOT to get the VNS. It also hurts. I can feel the pulse. I actually hear it in my left ear. I'm going crazy with these side effects. I had my left lower molar pulled because the nerve goes up your neck past your vocal cord - where they also make an incision - it's not just your armpit - then across the jaw line and up the back of your neck. This elliviated some of the constant pain I am experiencing. But I still have a constant headache.

The Vegas Nerve also extends into your stomache. If you suffer from any acid indigestion this will increase, as well as other digestive problems such as stomache ache, ulcers, and diarrhea.


God bless you as you make your decision. I may be suffering, but perhaps I can prevent someone from going through what I have gone through.

~ kepha cantor aka Rock Singer

Thank you so much for your input on the VNS.

You are so right about the stomach problems. I had to have part of my intestines taken out back in 95 and I have Peptic Ulcer Disease, GERD, Esopogeal spasms and heart problems.

It made my stomach problems multiply. I am on Prevacid and I had to start taking 2 a day and it still wasn't helping.

I started having panic attacks as I told you and they were so bad that I thought I would go crazy. My PCP wants mine back on low and I told him the only way I would do it is if he will answer my calls if I need him. He always has but that week he was out of town. 7 days of it made me want to keep it off forever but since I am so loyal to him I am willing to try it again on the lowest possible setting.

Also, I do have old memories of being molested as a child and I lost my husband a little over a year ago and I am still having a hard time with that. We just put his dog to sleep a few days ago and that brought the memories back even more.

I have had a history of medical problems for 20 years and have had 21 surgeries since 95 and going to have one in Jan. so again we will have to turn that damn thing off for it. I keep forgetting about this. I just had a surgery in Sept and we had to turn it off. That means I will have to start all over.

I had side effects that weren't mentioned on the list and the list has over 50. The one that I found on the internet did anyway. The books they send you from the company sure don't mention any of them before it's implanted or after.

It is a very hard call. My depression has been extremely bad since I got sick in 87 to the point of being suicidal and they have wanted to do ECT's on me but I didn't want them. This was the only option we could see at the time. My Dr. has been there with me for the long haul of the depression. 17 years of it anyway. He knows my history all too well that's why we opted for this.

I just don't know about it. I am tired of not sleeping at night because of it. I wake up everytime it goes off. I go to sleep and think I have slept for an hour and it's been the time between it going off.

I was glad to have your input on it. You didn't say if you were going to turn it off or not.

Please keep us up on how it goes for you.

Ada

We turned the VNS to .25 Monday and today I have it taped off. I am dealing with a lot of depression today. I think it comes from the pain from my syndromes being worse and missing Bill a lot today. I honestly don't know if the VNS has anything to do with it.

I am to the point that I don't know what to do about it anymore. My Dr. offered to turn it off today since he is leaving town for a week but I said no. I might be making a mistake but I am just to tired to even get dressed to go deal with it.

I have my doubts as to wheather it's going to help me.

Ada