NUROSYM

[Davidv45runner]

Has anyone here purchased a Nurosym device ?

If so , any comments ?

Accidentally came across it , thought it looked good , was going to buy it until I seen the cost … still might though

[mjames1]

No experience with it, but it does sound very interesting. I believe this trial used the same device or something very similar. Goigle the heading and you can get more information. I'm from the United States and I actually had a video consultation with the lead author of the trial.

He felt that my afib burden had increased to the point where the device would probably be less effective than an ablation. However, for selected populations, it did seem to significantly reduce their afib burden.

TRanscutaneous Electrical vAgus nerve sTimulation to suppress Atrial Fibrillation (TREAT AF): a randomized clinical trial

Jim

[Tomred]

Hi David, please do keep us informed if you do decide to buy Nurosym, it is expensive, but if it had any benefit then its cheap.

[ozziebob]

The Trial mentioned by mjames1 used the following method ... "LLTS (20Hz, 1mA below the discomfort threshold) was delivered using an ear clip attached to the tragus (active; n=26) or the ear lobe (sham control; n=27) for 1 hour daily over 6 months".

(Note: LLTS is low-level transcutaneous electrical stimulation of the auricular branch of the vagus nerve at the tragus)

The Trial produced the following results ... "At 6 months, the median AF burden was 85% lower in the active arm compared with the control arm" ... and applied to paroxysmal AF in the selected patients.

What! 85%! I almost can't believe it! Or am I missing something? Too time consuming for those with an active lifestyle?

So if you have a spare 60 mins per day, what's not to like?🤔. And why is there not more support for this treatment from Forum members? Curious? 🤔

Thanks for Posting.

[Hidden in reply to ozziebob]

A spare 60 minutes not required! I used mine while watching TV in the evening. Simples. 🙂

[ozziebob in reply to Hidden]

Who would have ever thought that "using it while watching television" was a possibility! 🤔🤕

More importantly, do you have any feedback about it's effectiveness? and were you treating pAF or persistent/permanent AF? ... there's no indication in your Bio.

[Hidden in reply to ozziebob]

Hi Bob - see my comment below, which I just edited to make it clearer. I was having one episode every 2-4 months but it did progress and I'm now having an episode several times a month to several times a week. Having said that, I haven't used the Neurosym for at least a year so I'd be interested in using it again but need to replace the earpiece.

It's impossible to say, isn't it? It's not a cure, so outside of that, how fast would my AFib increase with it or without it? If I was able to go back to using it daily now it would convince me if the frequency of my episodes decreased noticeably.

[mjames1 in reply to Hidden]

Does your NUROSYM device allow you to adjust the intensity or is it set? My understanding is that the earlier devices allowed you to adjust the intensity.

Jim

[Hidden in reply to mjames1]

Yes, it does. You can set a timer and the intensity.

[mjames1 in reply to Hidden]

Hmm. Do you know how old it is because I've read that the newer ones you cannot set the intensity.

Jim

[Hidden in reply to mjames1]

Oh really? That wouldn't be ideal. I really don't know how old mine is Jim. I got it in July 2022 but, as mentioned, I got it on eBay, sold as used though when it came it looked like new. I suspect it was a return. It doesn't give a model number that I can see.

Neurosym + box

[Rainfern]

I’ve been keeping my eye on this device, I believe there are 2 companies producing similar. More for my husband’s chronic fatigue syndrome (CFS) than for myself who had persistent AF until my ablation. I would like to see more independent studies before purchasing.

[Hidden]

Yes, I have one. I got it for half the regular price on eBay and it was like new. I started using it fairly early in my AFib journey and to be honest, it's hard to say whether it had an effect or not as my AFib has progressed and it's impossible to say if it would have progressed faster had I not been using it. At the time my AFib burden was low - one episode every 2-4 months. I stopped using it at that time (see following para).

One thing that's impacted on my use of it is that I now understand that the part that you attach to your ear has to be replaced after a certain amount of use and they are expensive. I think that mine probably needs to be replaced because, over time, it became more difficult to get it to work in the same way (difficult to describe but it progressed from a pleasant 'buzzy' feeling to an uncomfortable feeling, almost like a small electric shock). Because of this I stopped using it and I'm not keen on spending another £100+ I believe it is to replace the ear piece.

If it wasn't for that I would certainly still be using it daily. Especially now that my AFib has progressed to much more frequent I'd be interested to see whether using it again would reduce the frequency.

Edit: Thank you for reminding me that I was going to look into getting a replacement ear piece. I've now emailed Neurosym and will report back!

[ozziebob in reply to Hidden]

Hi Helen,

Useful info in your Reply, and helps with my questions above. Thanks! And good to know about the current state of your AF.

And yes, please report back about your ongoing Neurosym journey.

I cannot find information online about the cost of replacement ear pieces, but the device itself is now about £600.🤔

PS. I never imagined in my first Reply that "those living an active lifestyle" would have time to sit down and watch TV for 60 minutes, but it seems you have proved me wrong. 😄

bob

[Hidden in reply to ozziebob]

"PS. I never imagined in my first Reply that "those living an active lifestyle" would have time to sit down and watch TV for 60 minutes, but it seems you have proved me wrong"

Funny guy.

Retirement. Sooo much time to fill 😅

[ozziebob in reply to Hidden]

Sharp doll.

Did you get the price of replacement ear pieces?

[Hidden in reply to ozziebob]

No, I've had no response to my email as yet.

I have started it using it again, though, and have had better luck with getting the placement on my ear right so as to avoid the 'slight electric shock/being stuck with a pin effect'. I've been unwell for the past few weeks and having very frequent episodes - every other day, 3 days in a row even this week, which is unheard of - so after this thread reminded me about the Neurosym I dug it out and started using it daily again. It's too soon to report results....but 3 days free and counting, so I'll report back!

[ozziebob in reply to Hidden]

Sorry to hear about your recent struggles with AF.

Didn't you say the ear "shocks" were because the ear pieces you had were "worn out"? I would chase Neurosym again, but good news so far, even with those compromised ear pieces. Maybe they are working because of the immanent fear of being electrocuted?🤔

As a coincidence, just this morning I received only my second ever Barts AF email (I subscribed recently after a recommendation on the Forum), and it was about ear stimulation and AF. Here's a link to the same article online ... worth a look ...

bartsaf.com/

bob

[Hidden in reply to ozziebob]

Oh, interesting! Thanks for the article!

I don't know that the ear piece is worn out - that was my conjecture because I vaguely remembered reading somewhere that the earpiece needs replacing every so often. I have found it okay the last few days with careful placement. Also dabbing the ear with water prior to placement seems to help too.

When I was using it before it was quite early in my AFib 'journey' and I was having infrequent episodes, once every 2-4 months. To be honest, I think I was hoping for a cure (naive I know, but hope springs eternal) and with such infrequent episodes it was hard to tell if it was making any difference.

When I retrieved the Neurosym from whence it had been stashed and forgotten the other day I had gone into AF so I started using it straight away and I have to say, it felt like the episode settled down quickly. The next day my was heart was still feeling very wobbly and after dinner I really felt like I was about to go into AF again so I plugged myself in....and things settled down. That was Monday. Since then I've used it for 60 mins every day (while watching TV! 😀) and my heart has definitely been more settled in general and no further AFib, although my digestive problems (which has been ongoing for the past few weeks and which I suspect have been triggering the AF) have been as bad.

So, early days, but I'm just happy to have broken the 'every other day/every day pattern of the past several weeks.

I will still chase up Neurosym re a replacement ear piece.

[Hidden in reply to ozziebob]

Found it! And it costs £39....so I don't know where I got the £100+ from, or necessarily that it needs replacing. This from Neurosym's website:

Nurosym™ includes an earpiece, however you might need an extra.

The Nurosym Earpiece is designed for the left ear, for individual use only and should not be shared.

This Earpiece uses the Nurosym port and is only compatible with Nurosym.

We have designed the Nurosym Earpiece to be built to last, however just like a pair of headphones, with frequent use they can need replacing.

[ozziebob in reply to Hidden]

Please let me know your thoughts re it's effectiveness as you use it more. £600 is easy to find but difficult to spend (for me at least!).

I also had an unexpected (what else!) AF event 13 days ago after a break of 138 days. And some weird novel "feeling faint & wobbly" days since. But your situation would have me spending that £600 quick smart.🤕