Vagus Nerve Stimulation in Fibromyalgia and ME/CFS: A Trial of One

[Bigdiesel]

I would love to know the answer to this...as well.

I use a tens. Nervana is nothing like it. The signal needs to be directed at the Vegas and frequency needs to be correct. I dont see a tens working well.

 

[Bigdiesel]

Hmm, interesting to see the Nervana comments. I am wondering if this will be one more gadget that doesn't work well for me. I've used it two days in preprogrammed mode for 30 minutes cranked up to 25, one day felt slight prickling, not today, though it may have made me a bit tired today even without ear sensation. Little chevrons are moving. Three hours seems like a lot but we might as well wring it out for thirty days. They say to move up to a bigger ear plug if you go to 25 with no effect but my ears are too small to do that. I'm not impressed with some aspects of engineering and manual.

If you are up to 25 and feeling nothing, id suggest trying a different sized ear plug and be sure to spray saline on it for conductivity. Ive also found pre programed to be least helpful for me. Use your best feel good playlist!

It probably wont work overnight, and I hear you about yet another false hope, but I can definitively say that in less than a week, my muscle spasms are almost gone. Granted, its just one of many, but its a start that modern medicine after 5 years has been unable to deliver.

 

[Remy]

I was just about to pull the trigger after I saw nervana lowered the price to $289. (I've also been recently impressed with how well my new TENS unit is helping my RLS.)

But after reading through Reddit reviews I'm now thinking it might be better to wait for Nervana's next version. A lot of complaints about build quality, audio quality, cable quality, battery life, fitting problems, lack of program memory, etc. Maybe the company will eventually apply a lot of that feedback to an improved unit.

For that much money I'd expect a quality piece of equipment (especially when I see how powerful a cheap TENS can be).

I got a code holiday20 for $259. You could try it!

 

[Paw]

Good to know about the holiday savings, thanks. I mention the Nervana critiques hoping other users might confirm or reject them. Of all the complaints I've been reading, the one that gives me the most pause is its supposed lack of power.

I'm kind of reading between the lines here, but it seems like maybe Nervana had to keep its unit pretty tame in order to classify it as an entertainment device (on par with aroma-therapy or whatever). Whereas, with my TENS, I can keep pumping up the intensity like adding more hot water to a bath. Without ever passing the halfway mark I can get profound therapy.

A lot of people with Nervanas say they maybe feel a little tingling when the setting is at its highest. Part of the problem could be the earphone fittings, but I'd hope to be able to access the kind of therapy Cort describes (with the expensive machines).

 

[Steve]

Bigdiesel, thx for advice, events got in way of trial today, will try Nervana with music tomorrow and calibration feature. Paw, I don't know about power but they had to be cautious with claims. They have an M.D. co-founder who's a pain management and PM&R guy, though, so I made the hopeful assumption this is really a clinical device with entertainment labeling. If it doesn't blast, back it goes. How do you use your TENS to hack the vagus, the way it was described by someone a few years ago here?

 

[Paw]

How do you use your TENS to hack the vagus, the way it was described by someone a few years ago here?

All I've seen are people using little clips that go on the earlobes -- which doesn't seem like a very direct path to the vagus (although I don't know).

 

[Cort]

All I've seen are people using little clips that go on the earlobes -- which doesn't seem like a very direct path to the vagus (although I don't know).

I don't know. According to Nemos the area to contact is one of the lobes in the ear.

This thing is continuing to surprise. I was EXHAUSTED yesterday and in pain. I hadn't done it for days...I did a 35 minute session - and was still exhausted.... but then a couple of hours later it started to lift. The VNS really seems to ramp up my energy later in the day. Today after waking up at 3 am and not getting back to sleep for a couple of hours, I still feel good - nice clean energy - a very different feeling....This thing is quite powerful .

 

[Petra2]

I was just about to pull the trigger after I saw nervana lowered the price to $289. (I've also been recently impressed with how well my new TENS unit is helping my RLS.)

But after reading through Reddit reviews I'm now thinking it might be better to wait for Nervana's next version. A lot of complaints about build quality, audio quality, cable quality, battery life, fitting problems, lack of program memory, etc. Maybe the company will eventually apply a lot of that feedback to an improved unit.

For that much money I'd expect a quality piece of equipment (especially when I see how powerful a cheap TENS can be).

Hi Paw, I am very interested, how you use a TENS with the RLS.
Could you please tell me more?
(e.g. what kind of TENS equipment do you use and where do you put it to?)
Thanks a lot,
Petra

 

[Steve]

I'm having trouble inputting old cd I want but used it ambient today, wtf too big saline covered earbuds jammed into ears, calibrated, dancing chevrons, cranked to 25....nada, couldn't even feel tingling. Pretty depressing. I'm wondering if this thing is, however, increasing pain in my developing root canal problem diagnosed yesterday.

Cort, is there a free trial period on the Ceromed, guess I can check the website?

 

[Steve]

Doesn't matter, won't ship to U.S.

 

[Remy]

I finally tried the Nervana tonight and I'm having the same problem.

No tingling yet and I'm on high alert so I know I would feel it if there was something.

Hmmm...guess I will call them tomorrow to troubleshoot! Bummer.

ETA I changed to a larger earbud and I can definitely feel something now though it seems to be way stronger when I first turn it up and then go away again. I don't really like the jolt feeling when I turn it up either.

 

[Paw]

Hi Paw, I am very interested, how you use a TENS with the RLS.
Could you please tell me more?

Petra, I bought this TENS unit. I haven't had it long, so I'm still experimenting with placement. But I've used it every evening for about an hour before bed, and there's no doubt it's significantly reduced RLS. Best results come from putting electrodes on both feet -- usually the sides or top, since the bottoms are less sensitive. I just choose spots that are aching to be chosen. Then I place the other two electrodes where I feel the most energy on a particular evening -- shins, thighs, etc. I seem to get best results when they're placed on top of the leg (probably because there's more fat underneath).

Interestingly, I usually have to turn the volume up a lot higher on the left side, since my neuropathy pattern leaves my left side more numb, while my right side is more painful.

But even on nights when I don't think I've chosen the best placement spots I still get significant RLS relief. I've tried various settings, but I like "normal" best, and just keep pumping up the volume like adding hot water to a bath. BTW, I notice some TENS-type devices don't have normal settings (because they're emphasizing muscle massage), so I'm glad I bought a more traditional unit.

I keep meaning to look up charts online to help me choose the best placement points. But I haven't been in a hurry since the results, so far, have been good.

 

[Steve]

Petra, I bought this TENS unit. I haven't had it long, so I'm still experimenting with placement. But I've used it every evening for about an hour before bed, and there's no doubt it's significantly reduced RLS. Best results come from putting electrodes on both feet -- usually the sides or top, since the bottoms are less sensitive. I just choose spots that are aching to be chosen. Then I place the other two electrodes where I feel the most energy on a particular evening -- shins, thighs, etc. I seem to get best results when they're placed on top of the leg (probably because there's more fat underneath).

Interestingly, I usually have to turn the volume up a lot higher on the left side, since my neuropathy pattern leaves my left side more numb, while my right side is more painful.

But even on nights when I don't think I've chosen the best placement spots I still get significant RLS relief. I've tried various settings, but I like "normal" best, and just keep pumping up the volume like adding hot water to a bath. BTW, I notice some TENS-type devices don't have normal settings (because they're emphasizing muscle massage), so I'm glad I bought a more traditional unit.

I keep meaning to look up charts online to help me choose the best placement points. But I haven't been in a hurry since the results, so far, have been good.

Away for holidays so didn't test further but Nervana did not return my request for assistance left on their Mickey Mouse general mail box.

 

[deboruth]

Fascinating. Great coverage Cort.

 

[Steve]

Ok, I got customer service at Nervana, very nice young woman who told me their upgraded model, not mine, has stronger signal, with waves A and B, whatever that means. I have tried this multiple times on ambient and formula with no results. I will try another time or two, with direct music input and calibrated, if I can get it. If no effect, back it goes, yet another treatment failure. Nervana working for anyone else?

I will post this here, an earlier treatment failure that works for some people and just got eu approval.

https://fibromyalgianewstoday.com/2...lieving-device-avacen-100-obtains-eu-approval.

I'm beginning to suspect that 30 years of FM has caused probably irreversible effects to my cns and peripheral nervous system. As no meds, including opioids, work on my pain I'm not sure how I'm going to make it through whatever time I have with this quality of life. I just emailed the Nemos guys in Denmark asking if they have any fm successes. If so, will consider options.

 

[Remy]

A new study...

Electrical stimulation is good: Any downsides?
Stimulating the vagus nerve supports that tempering effect, but it can also somewhat excite the part of the nervous system that stimulates the immune response, which is counterproductive.

"Every circuit has a path coming from the brain and one going to the brain, and when you stimulate electrically, you usually have no control over which one you get. You usually get both." Patel said. These paths are often in the same nerve being stimulated.
The path leaving the brain and going toward other organs, called the efferent pathway, is the one to stimulate to help relieve chronic inflammatory conditions. The one going to the brain, called the afferent pathway, if stimulated, leads eventually to the hypothalamus, a pea-sized region in the center of the brain, which triggers a chain of hormonal responses, eventually releasing cytokines, messaging molecules that promote inflammation.

"You get a heightened inflammatory response when you stimulate the afferent pathways, which are actively conveying information about your internal state and trigger the immune system when necessary," Patel said. "And if a patient is already in a hyperactive immune state, you don't want to push that even more."

"When chronically inflamed, the body essentially thinks it's in attack mode the entire time," Patel said. "So, the ability to dampen the loop that results in more and more cytokines being produced is one way to shut down that cyclic process of more and more inflammation."

Stimulating downward (efferent), while blocking upward (afferent) vagus nerve activity keeps the good effect while preventing possible bad effects. In animals that received this treatment, blood tests showed that inflammation markedly decreased. Most importantly, this treatment can be turned on or off, and be tuned to the needs of each patient.

Story Source:
Materials provided by Georgia Institute of Technology. Note: Content may be edited for style and length.
Journal Reference:

1. Yogi A. Patel, Tarun Saxena, Ravi V. Bellamkonda, Robert J. Butera. Kilohertz frequency nerve block enhances anti-inflammatory effects of vagus nerve stimulation. Scientific Reports, 2017; 7: 39810 DOI: 10.1038/srep39810

 

[Gail C]

So, Gail, what do actually take? Phosphotidylcholine? I don't follow the abstract. sorry, brain fog. Thanks!

Hey Joya. I'm sorry. I got distracted with the Holidays, and am now trying to get caught up. Wiped me out for awhile,

I have not actually tried anything at this point, but your post reminded me to place an order. I am going to try and supplement Choline directly as I think I have problems with converting some substances, and problems with transporting others. I found a product online that has Choline along with some bioavailable B Vitamins. Some of us need to take the B Vitamins as well, so hoping for just one pill. I hate taking stuff!

ETA... scratch the above. My brain is on overload. Since the problem with Choline deficiency in POTS is due to a transporter problem, not necessarily an intake problem, then taking Choline by mouth would not be a good idea. I will try adding water and rubbing on my skin just as I do with Magnesium Oil. Glad I remembered ths before I placed an order! SMH!

 

[Paw]

"Stimulating downward (efferent), while blocking upward (afferent) vagus nerve activity keeps the good effect while preventing possible bad effects."

Sounds good. But Patel says this degree of control is usually not possible. Wondering how to achieve it with the vagus. Expensive equipment?

 

[Steve]

I heard back from Cerbomed and, assuming the Danes understood my request in English, learned they apparently do not want some American journeying there, purchasing a device, and bringing it back. So Cort may have the only one here. Maybe they will get it here this year. As for the Nervana, I will test it another day but don't get any effect. Remy did not post back with further test results.

 

[Remy]

I heard back from Cerbomed and, assuming the Danes understood my request in English, learned they apparently do not want some American journeying there, purchasing a device, and bringing it back. So Cort may have the only one here. Maybe they will get it here this year. As for the Nervana, I will test it another day but don't get any effect. Remy did not post back with further test results.

I did not feel anything consistently in my ear and what I did feel, I didn't really like. I didn't see myself going any further with the unit, unfortunately, so I sent it back. Back to gargling for me!