New Vagus Nerve Stimulator

[MTRJ75]

This is going to be a real short post because I'm not sure what I'm allowed to post and many of these type posts end up being edited or deleted, but I saw a vagus nerve stimulator advertised last night. I won't post the name, but it was selling for $229. 

It was advertised for anxiety and energy, not for autoimmune or autonomic problems though. 

It's not a tens device and appears to fit around the neck. 

Anyone have any experience with a device like this? 

[MTRJ75]

I've been given the go ahead to say the device is called a Pulsetto. The price appears reasonable, considering there doesn't appear to be any extra costs, aside from the gel, which does seem like it could be a deterrent. Who wants to have to clean that stuff off your neck every time you use it. 

[Caterpilly]

I just wound up getting Gammacore. It also works by holding it to your neck. It is super expensive but I’m so desperate. I wanted to try it. The same company makes Truvaga it delivers the same type of stimulation, but Truvaga is a little cheaper because it’s just a flat number of sessions given per device. So if you don’t need to do that many sessions, you might be able to get away with that. Some of the emerging research on vagus nerve stimulations in regards to autonomic dysfunction, and other symptoms caused by the vagus nerve does sound promising. We still don’t know what type is best, what type of device…( There are ones that go on the ear as well) …Which strength… How often a day and how long you need to do it for etc. so it’s all still experimental right now but I’m desperate so wanted to give it a try.

I’m very sensitive to things so right now I’m just working on increasing my tolerance to it. It took a while for me to figure out the right placement. a few weeks before I finally discovered the right spot. So now I just have to work up and see how I do with it. As far as for migraines, they say to give it 2 to 3 months before you can tell it’s working… As for other autonomic dysfunction symptoms… Who knows. But I like having something that I can try, at least… It’s possible it might be aggravating some of my pain and sensitivity, but they say sometimes that can go away with use. It’s hard to tell since I have daily symptoms. I only just started so I need more time to tell what it is or is not doing, but I think I might be starting to tolerate it a little little better than the beginning? But maybe it’s because I had it in the totally wrong place in the beginning. 

[Jyoti]

@Caterpilly--please update us as you gather more information. All good wishes that it helps.  A lot!  And @MTRJ75--let us know if you get the Pulsetto and whether you get any joy of it.  Also....hoping it does something great for you.

[Caterpilly]

@Jyoti

 thanks! and yes, if it helps with anything, I will let y’all know! 

[MTRJ75]

I now see they are marketing this product for dysautonomia as well. 

I don't believe there's a link attached, so I hope this is okay. 

[Caterpilly]

I didn’t see which product that referred to is that the Pulsetto? 

i heard from a Facebook group for vagus nerve stimulation that the Pulsetto’s lowest starting intensity is a little higher than other devices. So some people have more trouble tolerating it and also because it does both sides of the neck at the same time, but it just depends on the person. It’s all so variable.

In this patient run group, they advise to start on the lowest setting and go very low and slow since most people in that group have sensitivities due toCFS, POTS, etc , but of course this is all just patients sharing experiences and doesn’t necessarily apply to everyone. Anyway, they recommend starting with 1ma when possible. Gammacore/Truvaga starts at 1.5ma and goes up by 1.5 increments. Whereas pulsetto, for example, supposedly starts at 4ma.

My 3 mo Gammacore trial is almost over… Only 2 1/2 weeks left but it got all messed up. My symptoms started spiraling out of control after I started, and then it became hard to know what was just my body getting worse on its own and what was from the gamma. Only thing I think I consistently noticed is when I have more of a migraine it does make the headache worse… And in that case, I have to use a very low intensity setting to not flare it.  I’m still not sure what settings I can tolerate and what settings I may have success with so I would have to try it again. I couldn’t determine anything conclusively yet either way. And I don’t think I was able to work up to doing it consistently enough for a long enough amount of time to be able to tell. 

I may eventually still try Pulsetto just to compare different devices. And if it’s a one time payment, that’s much cheaper than Gammacore. Or I may switch to Truvaga since it delivers the same stimulation as Gammacore, but could potentially work out to be less expensive if you don’t need more than like 2 to 6 sessions a day. But I’m not sure what I need or don’t need yet.

I am supposed to start plaquenil soon and then that will be another variable thrown into the mix so I’m not sure when I’ll restart my nerve stimulation trials. Don’t want it to go to waste again. We’ll see!