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

[Prashanti]

Just a question concerning electrical stimulation devices and possibly using muscle stimulators for the vagus nerve. Would it be a good idea to understand the waveform, the intensity, etc.? Just wondering....as the alpha-stim consultant said that if I were to use the tens unit I have for my back that it would over ride the alpha-stim. And I've experienced the effects of too much stimulation...disrupted sleep, anxious thoughts...not fun

 

[Gail C]

The recent finding that folks with POTS have a Choline Deficiency *may* go a long way in explaining why we have problems with Vagal Nerve activity. I am at least going to try supplementing. I hope it will help.

Mechanism of choline deficiency and membrane alteration in postural orthostatic tachycardia syndrome primary skin fibroblasts.

Abstract

Fibroblasts from a patient with postural orthostatic tachycardia syndrome (POTS), who presented with low plasma choline and betaine, were studied to determine the metabolic characteristics of the choline deficiency. Choline is required for the synthesis of the phospholipid phosphatidylcholine (PC) and for betaine, an important osmoregulator. Here, choline transport, lipid homeostasis, and mitochondria function were analyzed in skin fibroblasts from POTS and compared with control cells. The choline transporter-like protein 1/solute carrier 44A1 (CTL1/SLC44A1) and mRNA expression were 2-3 times lower in POTS fibroblasts, and choline uptake was reduced 60% (P < 0.05). Disturbances of membrane homeostasis were observed by reduced ratios between PChosphatidylethanolamine and sphingomyelin:cholesterol, as well as by modified phospholipid fatty acid composition. Choline deficiency also impaired mitochondria function, which was observed by a reduction in oxygen consumption, mitochondrial potential, and glycolytic activity. When POTS cells were treated with choline, transporter was up-regulated, and uptake of choline increased, offering an option for patient treatment. The characteristics of the POTS fibroblasts described here represent a first model of choline and CTL1/SLC44A1 deficiency, in which choline transport, membrane homeostasis, and mitochondrial function are impaired.

https://www.ncbi.nlm.nih.gov/pubmed/25466896

 

[Cort]

I hope someone can answer this, what is the difference between the electrical signals of a Tens unit, a Cerbomed device, and a Nirvana vagus stimulator? A cheep Tens unit seems to do much of what the Cerbomed device does.

This site below has a well reviewed tens 3000 unit for 16.95, also on the site are the proper ear clips for 8.95. I have read some positive comments regarding tens used in this way for anxiety. Of course I suggest caution. For myself I currently have several issues with my head and neck, chronic lymph pain in my neck and enlarged salivary glands. Both for over 3 years. I will probably follow through and purchase said unit, but I just want to get a little more information.

http://www.tenspros.com/tens-3000-analogue-tens-unit-dt3002.html

https://www.tenspros.com/Electro-Stim-Ear-Clips-for-Depression-Anxiety-Pain-and-More_p_196.html

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

 

[Cort]

True, Voner, I read all of tandrsc's post back then, ordered electrodes to use with my Tens (useless as tens for my FM) and then decided hacking vagus was too scary. Like Remy and Janet, I just ordered the Nervana, better shipping here, tho, comes in two days and I will report back here. The Nervana founders are scientific heavy hitters, couldn't have composed a better crew if I were looking to make this product. Will it reduce my severe FM pain, don't know but I can spare $300. for thirty days to find out. No options left either. They can only call it wellness device so as not have to do expensive randomized clinical trials as a medical device. Gotta have something to hope about. I'm also going to check and see what an fMRI would cost me cash. Before I croak, I'd like to see what's wrong with my brain. Also, could transmit anywhere in world for consult with smart folks in other countries.

You guys should know that vagus nerve stimulators can take a while to work. It worked for me really quickly but I am unusual - I respond really rapidly to things. Another person it worked for it took three weeks for her to notice anything. If it works then its impact tends to get stronger over time - as in from what I could tell it may take up to a year for the full impact to be seen. (That's just what I gathered.)

 

[Cort]

True, Voner, I read all of tandrsc's post back then, ordered electrodes to use with my Tens (useless as tens for my FM) and then decided hacking vagus was too scary. Like Remy and Janet, I just ordered the Nervana, better shipping here, tho, comes in two days and I will report back here. The Nervana founders are scientific heavy hitters, couldn't have composed a better crew if I were looking to make this product. Will it reduce my severe FM pain, don't know but I can spare $300. for thirty days to find out. No options left either. They can only call it wellness device so as not have to do expensive randomized clinical trials as a medical device. Gotta have something to hope about. I'm also going to check and see what an fMRI would cost me cash. Before I croak, I'd like to see what's wrong with my brain. Also, could transmit anywhere in world for consult with smart folks in other countries.

Good luck! Looking forward to hearing how it all turns out.

 

[Cort]

a strong word of caution here.... there's not been a heckuva Lotta research done on these devices in reference to pain (and certainly none done for PEM, etc.). most of the research has been done concerning epilepsy (Cerbomed). The principles of this device or not overly complicated, they just concern frequency and pulse width and the location of where to put the vibrating device.

there's a reasonable amount of published literature on the subject, if you go out and look for it. I recommend going out and looking at the literature and doing some research.

I have experimented a bit and The short-term results were that it either had no effect OR immediately increased my symptoms, especially pain.

my experiments were pretty short term, kind of like Cort's. I was looking for a reduction in my symptoms, especially pain. No such luck yet.

@tandrsc has made a couple post on this forum where he (she?) described a hack to a tens machine that he used as a stimulator. I did the same. The advantage of a tens machine is that you have the ability to vary your pulse width and frequency. there are disadvantages to a tens machine also – basically it's much more difficult to get your vibrating probes located correctly. if you don't get them located correctly, you're going to be vibrating a different nerve and who knows what effect that will have.

here are the links to @tandrsc's posts....

http://www.healthrising.org/forums/...gus-nerve-stimulation-of-ear.2653/#post-10082

http://www.healthrising.org/forums/...gus-nerve-stimulation-of-ear.2653/#post-10250

I would start out in as low a frequency as possible. Too high of a '"dose" and you can get really whacked..(really whacked!)...if you're not getting side effects then stick with it as it can apparently take quite a while to have an impact.

Cerbomed says put the electrodes where the AVBN part of the ear is - right underneath that fold there - and to only use the left ear.

[bimg=fright|no-lightbox]http://www.healthrising.org/forums/attachments/vagus-nerve-branch-ear-abvn-png.2257/[/bimg]

 

[Petra2]

This is the information I have:
Cerbomed, which sells the Nemos device is the same (German) company as Cerbotec, which sells the Vitos device. Nemos is constructed for epilepsy with 25 Hz. Vitos is constructed für pain (tested with migraine) with 1 Hz. The background is, that – accidentially – they found, that 1 Hz is better with pain (1 Hz was the placebo group in their test! ;-) ) Apart from that the two devices are the same.

The Vitos device costs 1290 € in Germany. One can test in for three months for around 300 €.
I tested it for 4 weeks for fibro pain. I tested like it was recommended: as high as I had a sensation of prickling in the ear, which in my case was around 1 mA, and for 3 hours a day. I had no positive nor negative effect in this four weeks.
My father, who has fibro as well as rheumatoid arthritis, has tested it for two months with 2 mA, which was his point he got sensations in the ear. After two months he stopped, because he could not sense any effect.

My thoughts are now:
Maybe we had it too strong, as Cort has effects with only 0,1 mA?
Do you have prickling sensations in the ear with 0,1 mA, Cort??

And Cort, you are trying the 25 Hz device – maybe the 1 Hz is even better??

Anyway, I am VERY interested, how your one person trial is going on!
Please get us informed!!!!
Petra

 

[Joya Skye]

Hi Cort, thanks so much for responding. I have been too sick to look for these responses to my post lately. As if no one knew that one! I think I am not alone in the dept. of being broke from this illness. I still think if we knew the correct settings (like the Nemo seems to have built in), we could do it with a much less expensive device. BTW. I just read you current article about all the trials being done now and also the stimulating devices. What a great article! Sorry to write about it here, but had such a hard time getting to this, I am not going to take a chance that I won't be able to get to that one. haha. So glad you are understanding! This is all so humbling. I was such a powerhouse and now I can barely get through my day. Certainly humbling. love to you and all the brothers and sisters struggling with this. I don't have much else left. But love is power for sure!

 

[Joya Skye]

Have you tried it and any success?

Would like to hear more about this, Remy after you have tried it for a while. Vagus nerve stimulation is so important for the wired and tired feeling.

 

[Joya Skye]

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

Me too! This is what I was trying to figure out and nothing is more scary than the way I feel every day for years and years. 'Course, I am a less cautious type and understand those who want proof, but want to see some results while I am alive too.

 

[Joya Skye]

I would start out in as low a frequency as possible. Too high of a '"dose" and you can get really whacked..(really whacked!)...if you're not getting side effects then stick with it as it can apparently take quite a while to have an impact.

Cerbomed says put the electrodes where the AVBN part of the ear is - right underneath that fold there - and to only use the left ear.

[bimg=fright|no-lightbox]http://www.healthrising.org/forums/attachments/vagus-nerve-branch-ear-abvn-png.2257/[/bimg]

Funny, the picture is of a right ear.

 

[Joya Skye]

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

Didn't I already say: "Me Too!!". weird. must be brain fog.

 

[Joya Skye]

The recent finding that folks with POTS have a Choline Deficiency *may* go a long way in explaining why we have problems with Vagal Nerve activity. I am at least going to try supplementing. I hope it will help.

Mechanism of choline deficiency and membrane alteration in postural orthostatic tachycardia syndrome primary skin fibroblasts.

Abstract

Fibroblasts from a patient with postural orthostatic tachycardia syndrome (POTS), who presented with low plasma choline and betaine, were studied to determine the metabolic characteristics of the choline deficiency. Choline is required for the synthesis of the phospholipid phosphatidylcholine (PC) and for betaine, an important osmoregulator. Here, choline transport, lipid homeostasis, and mitochondria function were analyzed in skin fibroblasts from POTS and compared with control cells. The choline transporter-like protein 1/solute carrier 44A1 (CTL1/SLC44A1) and mRNA expression were 2-3 times lower in POTS fibroblasts, and choline uptake was reduced 60% (P < 0.05). Disturbances of membrane homeostasis were observed by reduced ratios between PChosphatidylethanolamine and sphingomyelin:cholesterol, as well as by modified phospholipid fatty acid composition. Choline deficiency also impaired mitochondria function, which was observed by a reduction in oxygen consumption, mitochondrial potential, and glycolytic activity. When POTS cells were treated with choline, transporter was up-regulated, and uptake of choline increased, offering an option for patient treatment. The characteristics of the POTS fibroblasts described here represent a first model of choline and CTL1/SLC44A1 deficiency, in which choline transport, membrane homeostasis, and mitochondrial function are impaired.

https://www.ncbi.nlm.nih.gov/pubmed/25466896

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

 

[Bigdiesel]

I bought the Nervana vagus nerve stimulator for my Christmas present.

Wonder if it is the same technology? It was under $300.

Me too! I'm on my third day and recording all results. I satarted @ 30 mins x2 level 12. Not experiencing any negative effects (with little pos) I increased to 2 hr yesterday and will go to 3 today. I'll probably stop at 4. The biggest discovery I made is with the ear piece. Size 2 and 3 fit using the criteria, but the response from 2 was far greater and more comfortable. As I'm completely winging this and shared experiences are greatly appreciated!

 

[Bigdiesel]

Me too! I'm on my third day and recording all results. I satarted @ 30 mins x2 level 12. Not experiencing any negative effects (with little pos) I increased to 2 hr yesterday and will go to 3 today. I'll probably stop at 4. The biggest discovery I made is with the ear piece. Size 2 and 3 fit using the criteria, but the response from 2 was far greater and more comfortable. As I'm completely winging this and shared experiences are greatly appreciated!

I've noticed now for 2 nights in a row my muscle spasms are almost nil. Maybe luck? Ive timed my Nervana to the times when I'm about to crash. It's definitely helped in that as well. So far no PEM from it, although last night had trouble falling asleep so not increasing above 3 hr/day and laying off it in evening. I'm beginning to enjoy the stimulating shocks in a wierd way.

 

[Petra2]

I've noticed now for 2 nights in a row my muscle spasms are almost nil. Maybe luck? Ive timed my Nervana to the times when I'm about to crash. It's definitely helped in that as well. So far no PEM from it, although last night had trouble falling asleep so not increasing above 3 hr/day and laying off it in evening. I'm beginning to enjoy the stimulating shocks in a wierd way.

Exciting!
Do you use it with or without music?
And can you change the intensity?
Please keep us up-to-date!

 

[Petra2]

This is the information I have:
Cerbomed, which sells the Nemos device is the same (German) company as Cerbotec, which sells the Vitos device. Nemos is constructed for epilepsy with 25 Hz. Vitos is constructed für pain (tested with migraine) with 1 Hz. The background is, that – accidentially – they found, that 1 Hz is better with pain (1 Hz was the placebo group in their test! ;-) ) Apart from that the two devices are the same.

The Vitos device costs 1290 € in Germany. One can test in for three months for around 300 €.
I tested it for 4 weeks for fibro pain. I tested like it was recommended: as high as I had a sensation of prickling in the ear, which in my case was around 1 mA, and for 3 hours a day. I had no positive nor negative effect in this four weeks.
My father, who has fibro as well as rheumatoid arthritis, has tested it for two months with 2 mA, which was his point he got sensations in the ear. After two months he stopped, because he could not sense any effect.

My thoughts are now:
Maybe we had it too strong, as Cort has effects with only 0,1 mA?
Do you have prickling sensations in the ear with 0,1 mA, Cort??

And Cort, you are trying the 25 Hz device – maybe the 1 Hz is even better??

Anyway, I am VERY interested, how your one person trial is going on!
Please get us informed!!!!
Petra

Hi Cort,
I am very interested if you sense some kind of prickling sensation at the ear with 0,1 mA ???
Thanks,
Petra

 

[Bigdiesel]

Exciting!
Do you use it with or without music?
And can you change the intensity?
Please keep us up-to-date!

I've used mine in all three modes. Line in music, ambient while watching TV, and preprogramed mode. I find The music mode most enjoyable. Each session you set the intensity and you can raise or lower it for comfort. I'm fine at a 15, but everybody is different. I think the key is getting a good connection with proper ear plug and use of saline solution.

 

[Steve]

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.

 

[Paw]

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).