Heart Rate slowing down and VNS

[Jonathan Hicks]

Hi guys, :hello:

I've just joined the Forum, trying to track down some advice. told that your the gang to ask. so here goes.

I have had a VNS implant for almost 3 years, and it has for me made a difference, my AED's have been reduced, and the # of seizures have also been reduced, not stopped but cut back, so on the whole things look OK!

But, over the last 10 months or so my heart rate is been recorded as dropping from about 76bpm to now stand at 45bpm

I'm currently taking part in a Clinical Study for an AED 'BRIVARACETAM' which I have been on over the last 3 months, but this does not seem to have played any part in this drop in heart rate that I can see, but who knows , I don't know at this stage if I am on the real AED or a suger pill, I have my own opinion, but it's just that my own opinion.

My weight through planned weight loss has gone down from 204lbs to 145lbs and I exercise each day by cycling. (in June this year I cycled from SF to LA 545 Miles in 7 days - a sponsored Bike ride)

My PCP is now rather concerned and has referred me to a cardiologist for a possible Pacemaker implant. This all sounds rather scary

One implant seems more that enough are there any links between the VNS and Sinus Bradycardia? could I have both a VNS and a Heart Pacemaker implant?

I don't feel sick. just a little lightheaded, but people have been calling me dizzy headed for years, i do have cold fingers and toes at times, but nothing more than that.

should I be concerned? Would I still be able to ride a bike and manage a long distance ride like SF to LA again? I am already fund raising for next year!

sorry to have gone on so long.

thanks for any advice

Jonathan

onder:

 

[Birdbomb]

Welcome Jonathan

Boy have you asked a loaded question....

I am going to refer you to my site, The VNS Message Board we have several discussions on cardiac issues and yes the VNS can and does cause Cardiac arrhythmias or other abnormalities.

During the intraoperative System Diagnostics (Lead Test), infrequent incidents of bradycardia and/or asystole have occurred. If asystole, severe bradycardia (heart rate <40 bpm), or a clinically significant change in heart rate is encountered during a System Diagnostics or during initiation of stimulation, physicians should be prepared to follow guidelines consistent with Advanced Cardiac Life Support (ACLS).

source

Google search "Bradycardia+VNS" and you'll get a whole bunch of links. We have one member Dennis who's heart was being STOPPED by his VNS for the entire 30 second stimulation! This was after being implanted for a few years. He thought he was just having seizures but his parents found him and called 911. They saved his life. At first the medical team didn't want to believe it was the VNS but when they saw his heart stop every time the generator ramped up, it put all doubts to rest and he was turned off right then, since then no other episodes.

Before you have ANOTHER implant put into your body, make sure the VNS is NOT the cause of your cardiac issues. Even if the VNS is not the cause, having 2 microprocessors will be very conflicting. Not to mention NO MRI's

 

[Bernard]

Hi Jonathan, welcome to the forum. :hello:

It seems like you should be able to test whether the VNS is complicit in the dropping heart rate by simply having it shut off for a day or two while having the heart rate monitored. Better safe than sorry!

 

[Cint]

Hi Jonathan & welcome,

I also have the VNS and it has helped with the reduction of seizures. So far, I haven't had any heart problems with it, just shortness of breath and some breathing problems (asthma like). We had to turn the settings down to correct those problems. As Bernard said, you should be able to have the VNS turned off for a few days so you can have your heart rate monitored.
And as Birdbomb stated, having two implants in you is very conflicting! Not something I would consider!
Have you or your PCP discussed these problems with your neurologist?


Cindy

 

[Jonathan Hicks]

Hi Guys, :woot:

Birdbomb, Thanks for the message the site has some interesting threads, which helped enlighten my understanding of this issue.

I am so sorry for Dennis and his parents that he and they had to go through such an awful time. It makes me feel so lucky, even given were I am at present.

I certainly don't want to go down the line of having two implants if I can avoid it.

Bernard, Although I am concerned about the possibility of turning off or/removing the VNS, what would the impact be on my seizure activity be? I am trying to fix up an appointment with my Neurologist in the next week or so to discuss the possibility of having the VNS turned off for a couple of days, but I am concerned!

I am due for the next clinical study check up on December 3rd, which this time also means seeing Dr King-Stephens, so I hope to have seen him prior to that, and have some feed back. I see the Cardiologist on December 8th, and hopefully I might have a better ECG report by then and some more detailed reports vis a vis the VNS effect on the heart rate if any.

Cint, I have spoken with my Neurologist in the past about my heart rate, but he did not seem to troubled about it, having looked back I see that it was about 70bpm in 2004/5 and then slowly over the last three years has started to drop and has now been on the low side for the last 8 months. The last time it was elevated was when I was in the ER following a Tonic-Clonic Seizure back in August then it was 81bpm

The thought of taking a backward step on that is just frightening, after such an improvement,what with the decrease in the # of AED's and # of breakthrough seizures.

Jonathan :?

 

[Birdbomb]

Breakthru seizures can happen when the unit is turned off. I began a new medication when I had mine turned off as a precaution and I did have some but they subsided.

Suppose the VNS is the reason for the low heart rate? Not sure if it would have to be turned off or just adjusted.

There are a TON of incident reports to MAUDE about cardiac problems. And they are on a rise too. These are people who had NO know cardiac problems. There are many unexplained deaths and many of those have been classified as SUDEP only because they had epilesy and no other cause could be found. Surviving family members have found their way to my site in hopes they could find answers. These devistated survivers are positive the VNS was the cause and most have mentioned cardic issues.

Make sure your doctor is aware that VNS can cause these problems.

There are several members on my site who's direct link of medical problems with VNS had to be witnessed in action. Scott's swelling ocular nerve was seen each time the unit came on and Dennis' heart stopping have been the most serious and life threatening. But keep in mind, they are NOT isolated incidents.

 

[brain]

:hello:

And welcome to CWE! And as Birdbomb posted,
there is the VNS forum available that you can learn
a lot by clicking on the link below on the thread!
While VNS does work for some, it doesn't work for
others - but there are consequences, just like there
are with AEDS.

So it does pay special attention and notation to heed
everything there. Make yourself a home here!

 

[Jonathan Hicks]

:hello:,

I have just managed to fix up an appointment with my Neurologist for tomorrow at 10.00 to discuss all of this. I will be taking all of my ECG reports for the last three years, so that should give him some ting to look back over.

I have to be honest, sitting here and watching my finger nails turning blue is scaring the crap out of me

I had a long chat with the guys at Cyberonics, not the most helpful in the worldonder:

what I did discover while taking with the Cyberonics guys was that the implant happened in April 2006, I thought it was earlier then that. could it really be the cause of an almost 30 beat drop in my heart rate in just over 2 1/2 years?

 

[Jonathan Hicks]

Hi & :hello:

Thanks for the welcome. It's great to have found the forum:clap:, I already feel very much at home and supported at what is for me right now a rather frightening place to be:-(

I am sure that all will work out right in the end. I have a great & supportive group of family around me (I am a Franciscan Friar & so have 7 other Franciscan Friars living with me!), its just getting a handle on it myself and trying to stop kidding myself, like I have been doing for the last x months...

anyway

Thanks again

"All will be Well, All Manner of Things will be Well"
(Dame Julian of Norwich 1342-1416)