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

[Cort]

My apologies for the website down-time. Our hosting company (Bluehost) went down for 14 hours. We've had many problems with our server and have even hired an expert to help us with it. We are going to move to a new hosting company.

 

[Katie]

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

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

Have you tried it and any success?

 

[Katie]

I haven't tried any vagus stim. machines but I lay on the floor and put my lower legs up on a chair and a small pillow under my butt to raise my hips a bit. This enables the blood to flow back to your head and heart. I rest like that for 15-20 min and feel soooo relaxed with less pain. It's just one of many vagus stim. exercises to try.
Would love to try a machine though-see how different that might feel in comparison.

 

[Janet Deane]

Yes, I've just bought a Nervana one 2. Altho it will take a long time for delivery to Ireland and cost $30 extra, especially with Christmas. Would love something to work after 24 years. Thanks.

 

[Remy]

Have you tried it and any success?

I haven't tried it yet.

I'll get it out tomorrow and be brave and try. Not doing me any good in the box so I'm glad this thread has come up to give me a solid push.

 

[Remy]

I haven't tried any vagus stim. machines but I lay on the floor and put my lower legs up on a chair and a small pillow under my butt to raise my hips a bit. This enables the blood to flow back to your head and heart. I rest like that for 15-20 min and feel soooo relaxed with less pain. It's just one of many vagus stim. exercises to try.
Would love to try a machine though-see how different that might feel in comparison.

Yes! We talked about this in a different thread a few months ago. I did it for about a month and it totally started working. I could see a shift on my HRV monitor from sympathetic to parasympathetic function.

 

[Janet Deane]

Yes! We talked about this in a different thread a few months ago. I did it for about a month and it totally started working. I could see a shift on my HRV monitor from sympathetic to parasympathetic function.

That's very encouraging. Hadn't heard of it before. Looking forward to giving it a try. They give a 30 days return policy so worth a try. Not sure what the difference is compared to the one Cort is trying, except a couple of thousand, of course.

 

[jill neimark]

Is it possible to do something low tech like stroking the path of the vagus or applying polarity therapy or acupressure?

 

[Steve]

I tried the (pretty expensive) alpha stim for months at every conceivable variable to no effect for severe FM pain, my primary symptom. This week I failed my last conceivable med, oxycodone, just gross sedation with no pain relief. I would very much like to hear from the folks who bought the commercial vagus stimulation machines. The vagus is a complex nerve with many connections and though I'm desperate, self hacking is pretty risky IMO.

 

[Steve]

To add to my note, a friend and I tried Thync extensively for both FM pain and general relaxation (she is normal). Both of us got mild headaches, no other effect. I've tried every electronic device and gadget you can try for pain without success, posted some here, so I look forward to hearing about the Nervana before I put out another $300 even for a trial. It's also the lost hope of yet another failed treatment.

 

[Kristine Anderson]

I've been itching to start researching the vagus nerve and I find this new method of treatment to be really interesting. It just makes sense. While the vagus nerve is on my list, I'm still researching what has recently become yet another, new diagnosis for me: Hashimoto's and possibly Hypothyroidism. (My 14 vials of blood and two 24-hour urine tests aren't all in yet.)

I have Fibro and ME/CFS (diagnosed like you, at different times by different docs), Lupus, RA, POTS and most recently, A-Fib/arrhythmia, for which I was sent via ambulance to the hospital while at my doctor's office a couple of months ago for a four-day stay. (I checked myself out on the fourth day because my day nurse tried to give me two decongestants every morning. I've never had them on a med list before. They flew into her computer in the telemetry unit and she didn't know you don't give a heart patient with a heart rates jumping from 40 to 200 cold medicine! If I hadn't had my faculties about me (many older folks don't), she could have killed me on day one. I also couldn't get a blanket, an advocate, the head nurse nor a cleaned bathroom, but that's another story. I went home and was "home-remote-heart-monitored" for three weeks and put on a medication that regulated my heart rate. (A pacemaker is next.) What that has to do with the vagus nerve treatment is that the A-Fib wasn't the real problem, yet it had to be fixed of course. It was a development of a serious side effect of thyroid disease! And that's a key to finding that there is a core issue in those of us with multiple diagnoses. We've become sick over a period of years from our environments and our food additives. The vagus nerve is and will be a big part of the body that needs treatment for many people in order to restore order. This is my opinion, which is unfinished, and I am not a medical professional. I am a researcher/writer/reviewer on chronic diseases and food/supplements as medicine.

 

[rebar]

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

 

[voner]

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

 

[Steve]

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.

 

[voner]

@Steve,

thanks! I understand the pain thing.

I am not familar with the Nervana device at all!. 30 day guarantee sounds great. Hopefully, Somebody will feedback how well they stand behind the guarantee. The principles involved in the company have the right medical background. you know more about the company/these guys?

I will have to do some research, but it sounds intriguing. thanks again.

 

[voner]

I am not impressed with the Scientific information available backing up their product, nor am I impressed with their methodologies. that said, I hope we get feedback from people who are trying it out. I would like to converse with the pain doctor behind it, though.

 

[Paw]

I lay on the floor and put my lower legs up on a chair and a small pillow under my butt to raise my hips a bit. This enables the blood to flow back to your head and heart. I rest like that for 15-20 min and feel soooo relaxed with less pain. It's just one of many vagus stim. exercises to try.

I will try that. You now have me wondering about whether my beloved traction/inversion table affects the vagus nerve in some similar way. I think of it mainly for my legs and hips, but it does significantly reduce all symptoms (and is energizing) for an hour or so -- as well as keeping chronic pain points (hip, neck, legs) in check.
I love how it's weighted, so that you can ease into whatever degree of inversion you're comfortable with at the time. Best purchase last year.

 

[Steve]

No, I wasn't impressed with "scientific" info either but I have to hope these folks didn't assemble a company and product to scam people like me.

Aside from my dashed hopes, they will just get it returned.

 

[Prashanti]

I haven't tried it yet.

I'll get it out tomorrow and be brave and try. Not doing me any good in the box so I'm glad this thread has come up to give me a solid push.

How long do you use it Prashanti? I'm using the Nemo's device at 0.1 amps (?) - the lowest setting - for from 10 minutes to 30 minutes.

Just writing about this had made me realize that using the alpha-stim has been very helpful to me. I used it daily for over a month and felt it gave me more energy. Then it started making me anxious which is something I had never experienced before so I stopped it. However, there seems to be a lasting effect in that I can stay awake all day and perform regular household tasks. YIPPEE. I used to have to take an energy drink or lot of coffee if I had a task to do during the day.
I have used the alpha-stim at a low level (2 bars....there are 10 bars in total) for an hour a day as this is what the consultant suggested. Usual advice is to use it 20 min a day at a higher level. I have no idea what the bars or levels mean and couldn't get a clear answer from the company consultant. Anything above the 2 bars makes me dizzy, and I can actually feel it effecting each side of the brain differently.

So when I read your post testing the Ceromed I decided to use the alpha-stim again last week. I woke up 2 hours after going to bed with my body energized and my mind racing. My mind is usually quiet. Perhaps I don't need to use the alpha-stim for awhile now or maybe I just need to cut back on it to a much shorter time and earlier in the day.
Research on these devices is limited. A lot of research sited on these products was originally done on the alpha-stim which has been around as a home device for pain since 1982 and for mood issues since the early 1990's. Apparently the government approves it for PTSD for the military. It is FDA registered not "approved". You need a perscription for it from any kind of medical provider.
About the wave form and intensity...well I'm not real clear on it or how to compare it to the Ceromed. However, I copied this from the website:
Alpha-Stim CES engages the serotonergic (5-HT) raphe nuclei of the brainstem. 5-HT inhibits brainstem cholinergic (ACh) and noradrenergic (NE) systems that project supratentorially. This suppresses thalamo-cortical activity, arousal, agitation, alters sensory processing and induces EEG alpha rhythm. 5-HT can act directly to modulate pain sensation in the dorsal horn of the spinal cord, and alter pain perception, cognition, and emotionality within the limbic forebrain.
Abbreviations: ACh: actetylcholine; LDT: laterodorsal tegmental nucleus of the brainstem; PPN: pediculo-ponitne nucleus of the brainstem; NE: norepinephrine; LC: locus ceruleus, 5-HT: serotonin.
This is the waveform...again from the website:

 

[Prashanti]

I just wanted to mention another stimulator product that seems to be working for people for pain in the body. I saw an ad for it and someone posted on a fibromyalgia blog that it really worked for her. It is called quell. You can check it at https://www.quellrelief.com
It is a stimulator that you strap around the outside of your calf. Quell works by stimulating sensory nerves in your upper calf. Neural pulses are carried to your brain, triggering the release of natural pain blockers that block pain signals in your body. It has a 60 trial period.
I have tried it as I don't have an extreme amount of body pain and it has diminished using the alpha-stim.