vagus nerve stimulator for POTS - is this really a thing?

[Den]

An Italian friend has recently told me about a doctor in Milan successfully treating POTS patients using an ear device for stimulating the vagus nerve. I think it was initially developed for epilepsy patients.

Does anyone know anything about this?

If this really is something credible I am surprised that I haven't seen it discussed in the POTS communities or that my rather wonderful consultant hasn't mentioned it. Those things alone make me skeptical.

But interested to know if anyone has heard of this.

[TCP]

I have one I don’t use it every day but when I have a flare of neck/heart/chest/gut issues I use it on a low setting. I found out about it on social media. Some people have an implant of a vagus nerve stimulator. 

[MTRJ75]

There was a doctor who gave a talk at the DI conference a couple of years ago, who had been successfully treating autoimmune cases with an implantable device and talked about the potential benefits in autonomic problems. There may be a couple of threads about this around here somewhere. 

[MikeO]

UWM Madison has been looking at this. Doubt they have the answer if it helps with POTs.

https://www.neurosurgery.wisc.edu/research/lake/

[Den]

Thank you as always to everyone for their time.

I did have a look around the site for any relevant threads but wasn't able to find anything (although that might be me and my brain fog rather than it isn't there).

With both autoimmune conditions and POTS this definitely interests me.

The implant isn't something I would probably ever be able to get or afford but the removable/wearable version is perhaps a possibility. Could you perhaps share a little more @TCP about yours....how effective it is and if you think it is worth it etc

[RecipeForDisaster]

I made my own using a tutorial I found online, ear clips I bought, and my old CMS3000 TENS device. It was not difficult. When I was doing better, I found it helpful to slow my HR. I think it’s worth a try!

[MikeO]

2 hours ago, RecipeForDisaster said:

I made my own using a tutorial I found online, ear clips I bought, and my old CMS3000 TENS device. It was not difficult.

You are so handy!

[RecipeForDisaster]

1 hour ago, DysautonmiaMatt said:

I use an Intensity Micro Combo Tens/Microcurrent unit with ear clips on left ear.  Cost under $100 which my chiro who is also a functional neurologist told me to get as I started treatments with him. I find it helpful and use it regularly.  I only use the microcurrent function.

https://www.tenspros.com/intensity-micro-combo-tens-microcurrent-di9698.html

That looks a lot fancier than mine!

[Den]

This is all very interesting for me. I think I am going to try it. I don't have anything to lose except a bit of money. 

[mehaller]

There's a Facebook group called A Vagus Adventure.  It's the only reason I rebooted my FB account from 2010.  I tried using a TENS unit and ear clips, per her recommendations.  I'd had a TENS unit laying around for back pain issues, ordered some ear clips and was diligent for a couple months.  I did not attain any discernable benefit from it.  Others on AVA say othewise - some dramatic.  There appears to be a modest body of work on Auricular TCN, but not a deeper "blessed" body of studies found in implant stimulation.  The TENS clips were cheap enough, and are TENS units themselves.  I thought it was worth a shot.  Note:  If you do try it, watch out for the cheapo ear clips from Amascam or Sleezbay.  The cheapos have blade type electrodes/contact points.  I tried them - no fun.  I then spent a few more bucks on the TENSpro ear clips that have round contact point which has a rubber or silicone cap - much more comfortable and functional.  The blade types have a wide flat surface and my ears have none of those....

Good luck.

[GasconAlex]

Seen this also for tinnitus but to stimulate the vagus nerve it needs to be a special electrode for the tens machine that sits within the left ear canal and not on the ear (otherwise you stimulate the ear not the internal vagus nerve). Discussed this with my ear surgeon and apparently it can work at modulating the symptoms of anything affected by the vagus nerve. But since I no longer have a left ear canal it was a non starter for me.

[edriscoll]

The Cleveland Clinic has reliable info about what it is and how it works in general, not specifically to POTS or dysautonomia. It does list dysautonomias as being one of the conditions helped by the device. It is a good reference article into understanding the science behind it.

https://my.clevelandclinic.org/health/treatments/17598-vagus-nerve-stimulation-vns

[Water Lover]

Just ran across this slightly old thread. I am not seeing the same thing as @edriscoll on the Cleveland Clinic site—it looks to me as though the site is listing dysautonomia as a possible contraindication for vagus nerve stimulation (it looks like they’re describing specifically implantable devices).

There was a clinical trial being done by Drs. Kem and Stavrakis at Oklahoma on transcutaneous vagal stimulation for POTS that was scheduled to be completed in early 2022, but it doesn’t appear that any results have been published; I’m not sure if Dr. Kem’s death affected the study. It could be worth getting in touch with Dr. Stavrakis to see if there’s any more info.

(Just for kicks, Dr. Stavrakis is a coauthor on a paper reporting that vagal stimulation is successful in treating autoantibody-mediated POTS in a rabbit model—I actually had no idea there were any animal models of POTS, so that’s fascinating.)