An Emerging Treatment
My interest in vagus nerve stimulation was prompted by a number of factors. Fibromyalgia (FM) and/or chronic fatigue syndrome (ME/CFS) studies indicate that reduced heart rate variability - a sign of vagus nerve withdrawal - was not just present in these diseases, but was associated with poor sleep and reduced cognition in them. Other studies indicate that sympathetic nervous system activation - a sign of vagal withdrawal - is common in all the diseases associated with ME/CFS and FM; e.g. irritable bowel syndrome, interstitial cystitis, migraine, and Gulf War Illness. The fact that low heart rate variability is associated with a higher risk of death even in healthy individuals was a bit of an eye-opener as well.
[fright]
[/fright]There was my firm conviction that the "arousal" that has been with me from day one must has its roots in sympathetic nervous system activity. It was a small fibromyalgia study, though, that really piqued my interest. That study - which involved surgically implanting a vagus nerve stimulator in the neck - caused the usually pretty buttoned-down Dr. Ben Natelson to state “The results blew me away. I have never seen an effect as powerful as this.”
In a year Jean Hasse went from being bedbound and on high doses of opioid painkillers (clearly not working!) to getting her Master's degree and regularly exercising. Many of the FM patients in the small study no longer met the criteria for FM at the end of it. The study was far too small to be definitive but these were extraordinary results. Another remarkable story concerned a woman crippled by a severe case of rheumatoid arthritis who was able to resume her normal activities.
· Reborn: Reversing Fibromyalgia with Vagus Nerve Stimulation
Natelson is currently involved in a Gulf War Illness study using a non-invasive ear-attached vagus nerve stimulator (VNS) that he believes may be every bit as powerful as the surgically implanted one. (Interested in being in the study? GWI patients contact Sara Tom in New York: 212-844-6665, stom@chpnet.org.)
Vagus Nerve Stimulation
Vagus nerve stimulation isn’t new at all; it's been used for many years in epilepsy. What's new are attempts to use it in other diseases. Clinicaltrials.gov When epileptics reported their pain was diminishing as well as their epilepsy symptoms, researchers began considering it for chronic pain conditions.
Today Clinicaltrials.gov lists 33 open vagus nerve studies, most of which are testing non-invasive vagus nerve stimulation devices. Invasive and non-invasive vagus nerve stimulators are being trialed in diseases ranging from Crohn's disease to migraine, epilepsy and depression. Attempts are being made to increase gastric motility and reduce inflammation in epilepsy, to reduce pain and migraine in Gulf War Illness, to reduce pain in esophageal disease, lupus, and following operations, and in adolescents with "functional" abdominal pain and/or nausea.
Chronic pain is clearly a major target of VNS studies. VNS may be effective with chronic pain because it may be able to reduce inflammation, oxidative stress, autonomic nervous system activity, the opioid response, central sensitization, and pain perception. Jean Hasse's underactive vagus nerve may have prevented opioids from working well for her. VNS stimulation also appears to help the nervous system unlearn the "windup" activity that plays such an important role in central sensitization.
VNS may also be able to reduce neuroinflammation in the brain. A recent mouse study indicated it reduced cytokine levels and microglial activation in the brain. Given all that, it was perhaps no surprise to see a recent review of VNS studies in mood disorders call the results "promising".
I've never thought the wiredness, arousal, hypervigilance, anxiety or whatever you want to call it that I've associated with ME/CFS was other than something physiological in nature. It was too constant and too difficult to tame for it be otherwise. It seemed to come baked in with my muscle stiffness, racing heart and post-exertional malaise.
Touchy System
In Dr. Pocinki's superb 2012 "Dysfunction Junction" article for The Solve ME/CFS Initiative he describes a supremely touchy system which, as Workwell's Staci Stevens has noted, just really doesn't how to behave.
Pocinki's in-office tests indicate overshoots by both sides of the autonomic nervous system, the SNS and the PNS, occur regularly. Acute stressors can produce a SNS surge followed by an even more excessive parasympathetic rebound that leaves one nauseous, sweating, lightheaded, with diarrhea and more fatigue. If you feel physically jacked up and bothered by small emotional or physical events and then depleted afterwards, this could be the reason.
Even being in a resting state can be too much for a fragile ANS system which flops around trying to find its mean. Deep breathing should bring on a nice parasympathetic nervous system (PNS) surge but Pocinki found that the initial PNS surge caused a large SNS reaction followed by another PNS surge.
Chronic stresses, on the other hand, stimulate the sympathetic nervous system (SNS) leaving one feeling "wired and tired" and jittery.
From fatigue, to exercise problems, gut problems, cognitive problems, sleep, the ANS, which is also an important immune regulator, could affect them all.
A Trial of One
So when a very generous person offered to let me try the non-invasive Cerbomed device (available only in Europe), I jumped at it.
The Cerbomed Device
[bimg=fright|no-lightbox]http://www.cerbomed.de/sites/www.cerbomed.de/files/imagecache/standard_columns_33/images/2016/nemos_en.jpg[/bimg]The Cerbomed device is not available for purchase in the U.S. yet. Cerbomed informed me earlier this year that they expected to get it approved for use this year. It simply consists of a small box which electrodes attach to which then get placed in one's left ear right underneath the fold in the section identified as AVBN in the picture.
Cerbomed recommended using the device up to 4 hours, but I was told by two people who have tried it that it's very powerful and going too far too fast can really wipe you out. Of the two people I know who have tried it, one is able to exercise for the first time in decades. The other has had some benefit but nothing near that.
My Trial
This clinical trial of one is hardly representative because I am hardly representative. I've been diagnosed at one time or the other over the last 30 years with both chronic fatigue syndrome (ME/CFS) and fibromyalgia. My main symptoms are fatigue, post-exertional malaise, chemical sensitivities, cognitive issues, some gut problems and pain. I'm probably much better off than most and am not on any drugs.
I'm unusual, though, in that I tend to respond very quickly to treatments, build up my energy and then CRASH. For the first 15 years or so I didn't respond to anything. Now I tend to respond rapidly but as my energy builds I get more and more flu-like symptoms.
[fright]
[/fright]Typically, and this has happened many times, not long after I start feeling clean bursts of energy, the tendons inside my elbows (oddly enough) start aching, I get fluey and exhausted, my feet start sweating, I get jittery and the energy boosts stop. This has been happening to me for about 20 years. (In a recent discussion Dr. Naviaux proposed why that may be happening. That blog will be up shortly.)
I'm therefore a bit unusual, plus we all know how incredibly variable responses to treatments are in both fibromyalgia and chronic fatigue syndrome. It took three weeks for the device to start having effects in the other person I know the device worked for. If the device works the effects build over time.
I don't know if this will work for me. I rather think my typical reaction to energy boosting and relaxing treatments will eventually knock it out. This has been, however, the most powerful response to a treatment that I can remember. It certainly suggests that an under-active vagus nerve plays an important role in my disease. It also suggests that the difficulty concentrating, the "rushing mind", the fatigue and PEM, the stiff, contracted muscles, and the cognitive issues are all of a piece. The whole universe of symptoms associated with being perennially wired and tired are all connected together.
Device Availability and Other Resources
The Cerbomed device, which is available only in Europe, at present, is very expensive (@$4000). Both GammaCore and Cerbomed, I believe, are attempting to get their devices licensed in the U.S.
Two much less expensive ($650 and $280) non-invasive vagus nerve stimulators are available in the U.S. Some studies have been done on one and none on the other. I have no idea if one device is better than the other or not. Check out available vagus nerve stimulators here.
Check out more resources including blogs and other ways to increase vagus nerve activity in our Vagus Nerve and Vagus Nerve Stimulation Resource section.
Health Rising's Big (Little) Donation Drive Is On!
Vagus nerve problems and vagus vagus nerve stimulation are just two of the many possibilities you probably would have never come across if it were not for Health Rising.To put it plainly, Health Rising relies on donors like you to exist. We need little compared to research efforts but we, too, have (very, very modest) salaries, upkeep, server and software costs, etc. to keep with.
Please keep the information flowing by contributing to Health Rising. $5 recurring donations are our lifeblood; you probably won't even notice them - but I assure you that we will. Find out how you can contribute here.
My interest in vagus nerve stimulation was prompted by a number of factors. Fibromyalgia (FM) and/or chronic fatigue syndrome (ME/CFS) studies indicate that reduced heart rate variability - a sign of vagus nerve withdrawal - was not just present in these diseases, but was associated with poor sleep and reduced cognition in them. Other studies indicate that sympathetic nervous system activation - a sign of vagal withdrawal - is common in all the diseases associated with ME/CFS and FM; e.g. irritable bowel syndrome, interstitial cystitis, migraine, and Gulf War Illness. The fact that low heart rate variability is associated with a higher risk of death even in healthy individuals was a bit of an eye-opener as well.
[fright]
In a year Jean Hasse went from being bedbound and on high doses of opioid painkillers (clearly not working!) to getting her Master's degree and regularly exercising. Many of the FM patients in the small study no longer met the criteria for FM at the end of it. The study was far too small to be definitive but these were extraordinary results. Another remarkable story concerned a woman crippled by a severe case of rheumatoid arthritis who was able to resume her normal activities.
· Reborn: Reversing Fibromyalgia with Vagus Nerve Stimulation
Natelson is currently involved in a Gulf War Illness study using a non-invasive ear-attached vagus nerve stimulator (VNS) that he believes may be every bit as powerful as the surgically implanted one. (Interested in being in the study? GWI patients contact Sara Tom in New York: 212-844-6665, stom@chpnet.org.)
Vagus Nerve Stimulation
Vagus nerve stimulation isn’t new at all; it's been used for many years in epilepsy. What's new are attempts to use it in other diseases. Clinicaltrials.gov When epileptics reported their pain was diminishing as well as their epilepsy symptoms, researchers began considering it for chronic pain conditions.
Today Clinicaltrials.gov lists 33 open vagus nerve studies, most of which are testing non-invasive vagus nerve stimulation devices. Invasive and non-invasive vagus nerve stimulators are being trialed in diseases ranging from Crohn's disease to migraine, epilepsy and depression. Attempts are being made to increase gastric motility and reduce inflammation in epilepsy, to reduce pain and migraine in Gulf War Illness, to reduce pain in esophageal disease, lupus, and following operations, and in adolescents with "functional" abdominal pain and/or nausea.
Chronic pain is clearly a major target of VNS studies. VNS may be effective with chronic pain because it may be able to reduce inflammation, oxidative stress, autonomic nervous system activity, the opioid response, central sensitization, and pain perception. Jean Hasse's underactive vagus nerve may have prevented opioids from working well for her. VNS stimulation also appears to help the nervous system unlearn the "windup" activity that plays such an important role in central sensitization.
VNS may also be able to reduce neuroinflammation in the brain. A recent mouse study indicated it reduced cytokine levels and microglial activation in the brain. Given all that, it was perhaps no surprise to see a recent review of VNS studies in mood disorders call the results "promising".
I've never thought the wiredness, arousal, hypervigilance, anxiety or whatever you want to call it that I've associated with ME/CFS was other than something physiological in nature. It was too constant and too difficult to tame for it be otherwise. It seemed to come baked in with my muscle stiffness, racing heart and post-exertional malaise.
Touchy System
In Dr. Pocinki's superb 2012 "Dysfunction Junction" article for The Solve ME/CFS Initiative he describes a supremely touchy system which, as Workwell's Staci Stevens has noted, just really doesn't how to behave.
Pocinki's in-office tests indicate overshoots by both sides of the autonomic nervous system, the SNS and the PNS, occur regularly. Acute stressors can produce a SNS surge followed by an even more excessive parasympathetic rebound that leaves one nauseous, sweating, lightheaded, with diarrhea and more fatigue. If you feel physically jacked up and bothered by small emotional or physical events and then depleted afterwards, this could be the reason.
Even being in a resting state can be too much for a fragile ANS system which flops around trying to find its mean. Deep breathing should bring on a nice parasympathetic nervous system (PNS) surge but Pocinki found that the initial PNS surge caused a large SNS reaction followed by another PNS surge.
Chronic stresses, on the other hand, stimulate the sympathetic nervous system (SNS) leaving one feeling "wired and tired" and jittery.
From fatigue, to exercise problems, gut problems, cognitive problems, sleep, the ANS, which is also an important immune regulator, could affect them all.
A Trial of One
So when a very generous person offered to let me try the non-invasive Cerbomed device (available only in Europe), I jumped at it.
The Cerbomed Device
[bimg=fright|no-lightbox]http://www.cerbomed.de/sites/www.cerbomed.de/files/imagecache/standard_columns_33/images/2016/nemos_en.jpg[/bimg]The Cerbomed device is not available for purchase in the U.S. yet. Cerbomed informed me earlier this year that they expected to get it approved for use this year. It simply consists of a small box which electrodes attach to which then get placed in one's left ear right underneath the fold in the section identified as AVBN in the picture.
Cerbomed recommended using the device up to 4 hours, but I was told by two people who have tried it that it's very powerful and going too far too fast can really wipe you out. Of the two people I know who have tried it, one is able to exercise for the first time in decades. The other has had some benefit but nothing near that.
My Trial
- Day 1: 30 minute session - I noticed a feeling of warmth, fullness and relaxation during the 30 minute first stimulation (at the lowest level); after it ended feelings of mild anxiety (hyperarousal) returned.
- Day 2: 30 minute session - I noticed a strong feeling of increased relaxation, increased mental clarity and well-being. This time it persisted throughout the day and into next day. I was able to walk further that morning than I can remember without pain. Throughout the day the feelings of increased strength, relaxed muscles and mental clarity persisted - and into the night - when I talked with a friend on a video hangout at about 10 pm...
- Day 3: the next day I woke again with a feeling of stillness I am really very unacquainted with. Went for another walk (morning is my worst time of day to walk) still feeling more energized.
- The Next Ten Days: I did the stimulator only for short periods (10 mins/twice a day) during the next week because I was going to give blood for Dr. Naviaux's study. Then three days ago, after I woke up at 3:30 a.m. feeling miserable, I cranked it up (still at the lowest level) for 30 minutes and responded well again. Despite a rather difficult day, my muscles felt relaxed, I had more energy, etc. Two days later remnants of that boost remain.
This clinical trial of one is hardly representative because I am hardly representative. I've been diagnosed at one time or the other over the last 30 years with both chronic fatigue syndrome (ME/CFS) and fibromyalgia. My main symptoms are fatigue, post-exertional malaise, chemical sensitivities, cognitive issues, some gut problems and pain. I'm probably much better off than most and am not on any drugs.
I'm unusual, though, in that I tend to respond very quickly to treatments, build up my energy and then CRASH. For the first 15 years or so I didn't respond to anything. Now I tend to respond rapidly but as my energy builds I get more and more flu-like symptoms.
[fright]
I'm therefore a bit unusual, plus we all know how incredibly variable responses to treatments are in both fibromyalgia and chronic fatigue syndrome. It took three weeks for the device to start having effects in the other person I know the device worked for. If the device works the effects build over time.
I don't know if this will work for me. I rather think my typical reaction to energy boosting and relaxing treatments will eventually knock it out. This has been, however, the most powerful response to a treatment that I can remember. It certainly suggests that an under-active vagus nerve plays an important role in my disease. It also suggests that the difficulty concentrating, the "rushing mind", the fatigue and PEM, the stiff, contracted muscles, and the cognitive issues are all of a piece. The whole universe of symptoms associated with being perennially wired and tired are all connected together.
Device Availability and Other Resources
The Cerbomed device, which is available only in Europe, at present, is very expensive (@$4000). Both GammaCore and Cerbomed, I believe, are attempting to get their devices licensed in the U.S.
Two much less expensive ($650 and $280) non-invasive vagus nerve stimulators are available in the U.S. Some studies have been done on one and none on the other. I have no idea if one device is better than the other or not. Check out available vagus nerve stimulators here.
Check out more resources including blogs and other ways to increase vagus nerve activity in our Vagus Nerve and Vagus Nerve Stimulation Resource section.
Health Rising's Big (Little) Donation Drive Is On!
Vagus nerve problems and vagus vagus nerve stimulation are just two of the many possibilities you probably would have never come across if it were not for Health Rising.To put it plainly, Health Rising relies on donors like you to exist. We need little compared to research efforts but we, too, have (very, very modest) salaries, upkeep, server and software costs, etc. to keep with.
Please keep the information flowing by contributing to Health Rising. $5 recurring donations are our lifeblood; you probably won't even notice them - but I assure you that we will. Find out how you can contribute here.
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![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
