Parasym tVNS device: Hi all, I'm... - Atrial Fibrillati...

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Parasym tVNS device

Sutty50 profile image
34 Replies

Hi all, I'm currently sitting on my settee with a blue clip attached to my left ear which is in turn attached to a Parasym device. This is only the second day I've used it so very early days and obviously nothing to report so far. I'll keep those that are interested informed if it actually does anything...

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Sutty50 profile image
Sutty50
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34 Replies
Buffafly profile image
Buffafly

Yes please

JaneFinn profile image
JaneFinn

Thank you, yes please :)

jeanjeannie50 profile image
jeanjeannie50

Are you actually in AF at the moment?

Sutty50 profile image
Sutty50 in reply tojeanjeannie50

Hi Jeanjeannie, yes I'm in the waiting list for a cardioversion. I couldn't have one when it first went as it was only 9 days after the last one

jeanjeannie50 profile image
jeanjeannie50 in reply toSutty50

I'm waiting for a cardioversion too, will be fascinated to hear if your Parasym device returns you to sinus rhythm.

Sutty50 profile image
Sutty50 in reply tojeanjeannie50

Here's hoping!

jeanjeannie50 profile image
jeanjeannie50 in reply toSutty50

I guess the vagus nerve is like a muscle needing to gain strength before it can help you and the Parasym device is not primarily a cure for AF, but a device to strengthen the vagus with a knock on effect of preventing AF. Is that how you see it?

Sutty50 profile image
Sutty50 in reply tojeanjeannie50

Yes, I think you're right. In all honesty I'm not expecting it to cardiovert me but after doing a little bit of research into the vagus nerve, I have a few of the more minor ailments that seem to be associated with it, e.g. tinnitus, wheezing, losing my voice. My reasoning is that if the device helps with those things I'll know it's doing something at least. If that's the case then for me it's worth considering using it longer term on the basis that it might help to stop my heart going back into AF once it's cardioverted. If it seems to do nothing I'll just send it back after the 3 months rental.

rosyG profile image
rosyG

Great let us know if any results

CDreamer profile image
CDreamer

Hi Sutty - I am interested in how this device is supposed to help AF specifically. Are you part of a study?

As far as I can see from their website the device has European clearance and FDA clearance for ‘no harm’ but I cannot find any evidence that it will help AF, only anxiety, mood and pain which will affect someone with AF. I know there are trials for an implantable ANS stimulator but again not connected to AF. I will follow your posts with interest.

It seems this device is not currently available outside of the US.

Sutty50 profile image
Sutty50

Hi CDreamer, no I'm not part of any study. I found out about the device on this forum when Ablation627 posted a link to a study that's been conducted into it's use on AF sufferers. The results seem to be promising. Although it's not approved for use in the treatment of AF, the device is available for monthly rental in the UK. As the risks seem to be minimal I decided it was worth the money to give it a try, even if it helps with other health issues related to the vagus nerve. If it does help long term with my AF all the better!

Buffafly profile image
Buffafly in reply toSutty50

I have just been reading about this on the BBC website. It says the device may 'thwart ageing'. BBC News - Ear 'tickling' therapy could 'help thwart ageing'

bbc.co.uk/news/health-49157343

Last chance for some of us 😒

jeanjeannie50 profile image
jeanjeannie50 in reply toBuffafly

Thank you for sharing this Buffafly, it all adds up to giving us a little more hope of being 'normal' again. 🤞😃

Sutty50 profile image
Sutty50 in reply toBuffafly

Lol, I could be a new man this time next year!

jeanjeannie50 profile image
jeanjeannie50 in reply toSutty50

Yes, you'll be able to do the decorating, gardening and other little jobs with no problems. Lol.

Lottie57 profile image
Lottie57

Sounds very interesting and would definitely like to hear what you think of it after your trial. 🙂

CCW66 profile image
CCW66

Please keep us updated. I am planning to buy one. How does it feel? Are you in UK?

Sutty50 profile image
Sutty50 in reply toCCW66

Hi CCW, once you've got it set right you don't feel anything at all. It did hurt at first, I couldn't feel it so kept notching it up then it suddenly kicked in. I just turned it down and it was fine. Yes I'm in the UK, in the East Midlands, we have the option to rent for a minimum of 3 months which is what I've done for now.

HowMyHeartSings profile image
HowMyHeartSings in reply toSutty50

Hi Sutty - do you get the rental back if you purchase? Looking forward to hearing if it benefits you.

Sutty50 profile image
Sutty50 in reply toHowMyHeartSings

Hi, it doesn't specifically mention it on the website but if I decide to buy it I'll definitely ask. Thanks

DuckWing profile image
DuckWing

Keep us informed, hope it works

CCW66 profile image
CCW66

Is it like a series of tiny electrical shocks? I am planning to buy one on my next trip to UK.

Sutty50 profile image
Sutty50 in reply toCCW66

Yes exactly like that but you just have to find the correct level so you can't feel it

djmnet profile image
djmnet

Do keep us all posted!

HowMyHeartSings profile image
HowMyHeartSings

Just received a rental unit but on reading the detailed instructions it said not to use it if you have any heart arrhythmia.

Sutty50 profile image
Sutty50 in reply toHowMyHeartSings

It actually says 'not indicated for' if you have the same usage details as I do. I think that's because they're not licensed to market it for af specifically. As you know they've carried out a trial specifically targeted at af sufferers with very few, mostly minor, side effects reported, which are also listed in the same file. Added to this, before they accepted the rental I had to give details of all of my current conditions and medication and obviously put AF at the top of this list. Obviously you need to do as you see fit and if you're not comfortable using it then that's for you to decide but for me I'm going to carry on for now.

HowMyHeartSings profile image
HowMyHeartSings

Completely - I’ve got Atrial Tachycardia so not sure what to do.

Sutty50 profile image
Sutty50 in reply toHowMyHeartSings

Hi, what did you decide in the end, are you using it?

HowMyHeartSings profile image
HowMyHeartSings in reply toSutty50

Decided against using it yet, how are you getting on?

Sutty50 profile image
Sutty50 in reply toHowMyHeartSings

I have to say I haven't noticed any difference at all so far, I'm not expecting it to cardiovert me but my tinnitus, digestion and strength if voice are all still the same. My cardioversion's been brought forward to the 18th Sept which is great but I'm now fretting that it won't work lol. Will keep using the device while I have it then decide when the 3 months rental's over

GeneralLee profile image
GeneralLee

Any news? 😄

Sutty50 profile image
Sutty50 in reply toGeneralLee

Hi, no nothing to report. Tbh reading the reports and literature it's highly unlikely to have any real effect while I'm in AF or cardiovert me but what it is reported to have an effect on is helping to stop me going into AF once I'm in NSR. I've been using it now for 12 days and I haven't noticed any difference in my tinnitus, digestion or voice either but I think it's more of a long term thing. I'm booked in for a cardioversion on 18th September and assuming that's successful I'll carry on using the device for the next couple of months and see what happens...

Vaguest profile image
Vaguest

Hi there -- I'm wondering how you got on with the tVNS from Parasym? I'm guessing it didn't have a very big impact as you haven't been back to the site, as far as I can tell, with a rave review? I'd be grateful for an update. V

Sutty50 profile image
Sutty50 in reply toVaguest

Hi Vaguest, I sent it back around February. Tbh I don't really know if it was having any effect on my AF, I didn't have any episodes while using it but I often go long periods without issues anyway. I cut right down on alcohol (I can't quite bring myself to give it up completely..) and got back to running which has probably had a bigger effect. I've been AF free since last November until just last Monday but fortunately it went back into NSR after taking flecainide. I can't say the tVNS didn't do anything but I didn't notice any improvement in my tinnitus so I had no real evidence that it was. I'd be interested to know if it would help anyone that has frequent episodes of AF, and I still think if you fall into that category it'd be worth trying. Sorry I can't be more positive.

Dave

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