Seeking advice on my current situation (VNS related)

[UsedAndAbused]

Hello, glad I found this site. Anyway I had my VNS implanted on 9/24/2014. After the “healing period” ended my neurologist turned the VNS to the 2nd lowest setting. So I figured, well that ought to do the trick. As it turns out, when the device “stimulates” I almost lost my entire ability to talk. So naturally this freaked me out. I went back and had the device dropped to the lowest setting. At the lowest setting I still stay pretty hoarse. My doctor also adjusted my medication doses when she lowered the VNS. My girlfriend and my family have told me that they’ve noticed I do not partake in conversations nearly as much as I used to. I can’t carry on a decent conversation without feeling choked every few minutes.

I live alone (yet close to family), and they told me they hadn’t noticed any seizures (they aren’t around me 24hrs a day). I figured, well the thing must be working then. I told my neurologist this as well, and she said “that’s wonderful, I’m so happy. Things are starting to look good for you”. Then a couple of days ago I missed my morning, dose of medication (2 750mgs of Keppra, and 2 100mg of Lamictal). That wasn’t on purpose. It was an unavoidable accident. Well later that afternoon I had a pretty bad seizure while setting next to my girlfriend on the couch. Normally I’m only able to feel pre-seizure auras, but this hit me hard. I didn’t know where I was for a good 5 or so minutes. When I came to, my girlfriend told me what happened, and despite my condition it still surprised me. I sat there for about 30 minutes in disbelief.

So I came to what I figure is a logical conclusion that this VNS isn’t working for me at all. That I’ve been enduring these awful side effects for the past nine or so months for no good reason, and that I may face long term damage to something, like my vocal cords or vagus nerve. I also have a constant burning sensation just above the VNS. Almost like a lighter is being held up to my chest. I haven’t found a good explanation for that yet either. So I’m pretty sure I don’t want this thing anymore. I can’t have it turned higher than its lowest setting anyway without almost completely losing to ability to speak.

However I do not see my neurologist again until the end of next month. I’m sure she’s going to try and assure me that having it removed is a mistake. So we may end up in a friendly argument over the situation. Anyway, I’d like to hear some advice on how to handle this matter. There seems to be a lot of shady and devious things/actions surrounding this device. I’m sure she’s well aware of that too, and may be persuaded by outside sources to encourage the continued use of it. I thought it was working, and was putting up with a diluted voice because of that. But then I missed my meds I started seizing noticeably (to me). The device didn’t do its job, and makes other aspects of my life worse. So how should I handle/approach my neurologist on this matter? She’s been very nice to me in general, but I think it’s obvious that this thing needs to go. She’s mostly likely to disagree.

 

[Nakamova]

The link below will take you to CWE threads that discuss the VNS, but you may want to start with this one: http://www.coping-with-epilepsy.com/forums/f23/my-vns-experience-22263/ by Arnie. His experience was similar to yours, and he ended up having the VNS turned off. Worth reading the whole thread -- he achieved seizure control by other means.

We also have CWE members who have had success with the VNS, so they may chime in with tips as well.

http://www.coping-with-epilepsy.com/forums/tags/vns.html

 

[Bernard]

The VNS is listed as an adjunctive therapy - it is supposed to complement your main therapy (ie. drug). If you missed a dose of your meds, I'm not sure that it is fair to blame a subsequent seizure on a failure of the VNS.

 

[Cint]

I had my first VNS in 1997. Initially, I had a difficult time speaking, too, but as time went on, I got used to the stimulation of the VNS and am able to carry on when speaking. My voice still fades a bit, I just let people know. And I get shortness of breath when out on a brisk walk or bike ride, but I knew that in the beginning. Plus I now have asthma-like symptoms, so now keep an inhaler on hand in case I need it. But those are all things listed in the manual that comes with the VNS. I now have my third VNS and it is what has saved me as far as seizures! Temporal lobe surgery did nothing but make seizures worse for me and trying up to 12 meds didn't help much either. But like anything new or different, it takes time. With my very first VNS, we had to try numerous different settings before finding what would work for me. That took about 9 months. I'm now on the highest setting for better seizure control (not completely controlled). Plus I still take two AEDs.

When you see your dr. again, ask him/her to change the settings again. Maybe that can help with you voice, which is the most common complaint. And I see it hasn't been a year since you had the VNS surgery. Sometimes it takes a bit longer to see any improvement. Gotta give it time.

Gradual Improvement


The benefits of VNS therapy are not always seen right away. In fact, seizure activity may improve slowly over the first 2 years of treatment.

 

[UsedAndAbused]

The VNS is listed as an adjunctive therapy - it is supposed to complement your main therapy (ie. drug). If you missed a dose of your meds, I'm not sure that it is fair to blame a subsequent seizure on a failure of the VNS.

No Bernard my situation is very much similar to Arnie's. I just read through his experience with it. Blaming me for it isn't exactly fair either. I had to rush out the door quickly that morning because my girlfriend's mother was being taken to the emergency room. That's the only dose I missed while having the VNS.

 

[UsedAndAbused]

Change in the situation

There are a lot of sites and forums out there lining up concerns about VNS therapy, and of course that bothered me. @Bernard the problem was not related to my medication, it was that my VNS was not configured properly. When I emailed my Neurologist explaining my situation she had me come in the very next day, and coincidentally there was a person from Cyberonics there. Her, my neurologist, and my neurologist's assistant spent about 2 hours talking to me. Talking and trying various configurations with the device. To give them credit they kept going until I was happy with the seizure control and my voice. There are still some issues with hoarseness, but it's nowhere near what it was. So they also gave me advice like reading to myself out loud (very loudly at that), and singing. Activities to strengthen my voice. Reading out loud I can handle, but I will probably pass on the singing. I would be torturing other people, and myself. So I've decided to keep it on as of now. I'll just to see if any changes happen down the road. The device is really finicky.

 

[Belinda5000]

The VNS It worked great for me in the beginning and gradually over a period of time it stopped , I'm refractory and everyone's case is different. I had my first one and 2 weeks after I got it a new one came out.I got the battery replaced twice. Some people have better luck with it than others.

 

[UsedAndAbused]

Yeah

Yeah I've learned that VNS results vary case by case. I'm really cynical, so I keep my expectations in check. This is no miracle cure, which 99.9 percent of epileptics know. My neurologist told me that my nerve is far more sensitive than most of their other patients, so it can't be turned up very high at all. It's as high as it can go now with me at the moment, so I'm not sure how much more tinkering they can do if another issue comes up. She said in my case the battery should last around 6 years, so we'll see.

 

[Bidwell]

Wow. Hope you keep us posted!

 

[valeriedl]

I got my VNS in 2007 and had the battery replaced in 2013. My settings are pretty high and my neuro told me that my battery won't last as long as someone who has lower settings.

Through the years my neuro has adjusted the settings on my VNS. Usually to a higher one. It's not a 'one setting works for everyone' type of thing.

I have missed taking my meds a few times since I've had it. I have had and have not had seizures because of this.

I still have to take meds and I am still having seizures. But since I've gotten the VNS it has reduced my seizures greatly. Before I got it I was having around 20 or more seizures a month, now I'm having on average 7 a month. The seizures aren't nearly as bad and don't last as long. When I or someone else uses the magnet on me when I'm having the seizure it brings me out of it pretty quick.

My breath doesn't last as long. If I try to sing or read out loud I have to take a break quite often. My voice has changed some slightly too. This is due to the VNS. It is one of the side effects of it that is on the Cyberonics website.

 

[Belinda5000]

For a battery to last 6 years you'd have to be on one of the lowest settings there is.

 

[valeriedl]

For a battery to last 6 years you'd have to be on one of the lowest settings there is.

I don't know if all batteries are different but my neuro said that on average they last about 8 years, and that's when they are set on lower settings.

I know he did say that he was surprised that my battery had lasted as long as it did considering the settings it was on. I have the settings that it's currently on wrote down somewhere but of course I can't find them to tell you what they are!

 

[UsedAndAbused]

A little worried

I've been speaking with my Neurologist through the clinic's patient portal online, and she indicated that she wanted to try and turn the VNS back up some at my next appointment (July 27th). By then it will be 10 months since I've had it installed. She believes that doing so will get my seizures just about completely under control. My question to those who have the device (or are knowledgeable about it in general), did your voice improve over time? I know each case is different, but I'd like to hear another person's experience in this forum. I'm getting mixed messages about this from other websites. Some say their voice never improved while having it, and other's said their's gradually returned to normal. So naturally I'm a little worried. I don't want to end up sounding like Ned from South Park for the rest of my life.