Why did you have your VNS turned off?

[valeriedl]

What were some of the reasons that you had your VNS turned off? Did anyone decide to have it turned back on if you did have it turned off?

I had my VNS turned off at the end of last year because I thought it was causing problems with my vision and a few other reasons.

After over a month I was still having the problems. My neuro changed the time I took some of my meds and I started taking some vitamins. Everything went back to normal. I didn't have any changes in the amount or type of seizures I was having when I had it on or off either.

I'm planning on having it turned back on at my next visit, in about 3 weeks, because I want to be able to use it. It stopped my seizures, as long as I knew it was coming on, and it brought me out of a seizure faster.

 

[arnie]

You know my story Val, but for others who may be reading this I'll answer. Mine never really got up to the therapeutic level, and even at the relatively low levels the side-effects were intolerable. They included extreme pain when it was activated, hoarseness and shortness of breath, choking on food and saliva, and fairly severe sleep apnea. I now have my epilepsy controlled with the change in my med regimen (which I "discovered") and have not had a seizure in over 1 1/2 years. The VNS generator continues to itch at various times throughout the day and still gets pushed on by some seat belts. Those are minor inconveniences, but still enough to make me constantly aware that the thing is forever with me. I can't imagine having it turned on again. I really hope that you have good results with yours when you get it turned back on.

(If anyone would like to buy a nearly new generator, give me a call! You would only have to pay a small shipping and handling and surgical removal fee! Such a deal!)

 

[Cint]

Hey Arnie, I know your story. But what I don't understand is why did you have the VNS put in anyway, if you continued searching for meds that would control seizures after VNS surgery? That still makes no sense to me. The only reason I had the VNS put in is because it was my LAST option, after trying numerous meds, PLUS brain surgery!! Now my VNS is at the highest setting. YES, at times I have issues with swallowing and when it is windy outside, I do have breathing issues. Also, I cannot be around those who smoke now. That makes me wheeze. All that is listed as side effects in the VNS manual. The Vagus Nerve is the 10th cranial nerve and does effect the laryngeal nerve and pharyngeal nerve.

Val, I had my 1st VNS turned off for a few weeks because I ended up with a bad case of pneumonia/bronchitis and was coughing so bad I couldn't breathe. My neurosurgeon had to turn it off until I was well again. Fortunately, during that time I didn't seize at all. The VNS is a life saver for me. Seizures can be fatal!!

 

[arnie]

Hi Cint. I had the VNS put in after I had had several hundred seizures a year for 30-olus years and been on five different medications. None of the meds did anything to control the partial seizures, and three of them had really bad side-effects. ( They did stop the GTCs, though.) On that basis it seemed like the VNS would be a reasonable idea, since I had refractory epilepsy and had failed five different meds. I didn't start messing with my Lamictal dosing until after it became pretty obvious that the VNS wasn't gonna do anything. My epileptologist wanted to start me on different meds while she was still trying to get the VNS up to speed, but I told her I wouldn't do that, because it makes no sense to change two variables at once.

I'm really glad for you guys who have good luck with the VNS. I had very high hopes for it, but it was not to be . . .

Onward! Happy Easter!

 

[suebear]

What were some of the reasons that you had your VNS turned off? Did anyone decide to have it turned back on if you did have it turned off?

I had my VNS turned off at the end of last year because I thought it was causing problems with my vision and a few other reasons.

After over a month I was still having the problems. My neuro changed the time I took some of my meds and I started taking some vitamins. Everything went back to normal. I didn't have any changes in the amount or type of seizures I was having when I had it on or off either.

I'm planning on having it turned back on at my next visit, in about 3 weeks, because I want to be able to use it. It stopped my seizures, as long as I knew it was coming on, and it brought me out of a seizure faster.

I'm in the process of having a VNS turned off but it is because we have found something better than the VNS to control my type of seizure flow - the Deep Brain Stimulator. It has taken a lot of time to make it happen but over a lot of patience and settings we have discovered the right combination will actually make things work.