1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 15th April 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Vagus Nerve Stimulation

Discussion in 'Other treatments' started by Dolphin, Sep 23, 2019.

  1. Baggins

    Baggins New Member

    Messages:
    1
    Dear Penelope, I have one question: does Parasym produce stronger effect than diaphragmatic breathing?
     
    cyclamen and Rain like this.
  2. Nathalie Wright

    Nathalie Wright Established Member (Voting Rights)

    Messages:
    76
    Has anyone else here tried it? Would be interesting in hearing people’s experiences
     
    bobbler likes this.
  3. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,938
    Location:
    Aotearoa New Zealand
    This VNS stimulator being discussed is clipped to the tragus, the bit of the ear that is pierced below.

    tragus.jpg

    While the tragus is a convenient place to clip something to, it's probably not a very good way to stimulate the vagal nerve.

    The evidence for the utility of invasive Vagal Nerve Stimulation (iVNS) (that is when a stimulation device is implanted beside the vagus nerve in the neck) is quite weak. Studies tend to be either very small or unblinded or both. Improvements are usually relatively modest and could be a placebo response. iVNS is claimed to work in a wide range of conditions, most of which rely on patient reports to assess improvement such as depression and anxiety (i.e. subjective reports).

    The evidence for transcutaneous VNS is weaker still, with the evidence for VNS achieved by a clip on the tragus as opposed to another part of the ear even weaker.

    It is not at all certain if a clip on the tragus of the ear is able to stimulate the vagal nerve adequately. In fact, it isn’t even clear if the vagal nerve is stimulated at all. Knowledge of neuroauricular anatomy is described as 'sparse' in the paper linked above, and the tragus does not appear to be a particularly well enervated by the vagus nerve.
     
  4. tmrw

    tmrw Established Member (Voting Rights)

    Messages:
    54
    Location:
    Germany
    Last edited: May 14, 2021
    Michelle likes this.
  5. Marjoleine

    Marjoleine New Member

    Messages:
    2
    @Penelope McMillan i would be very interested to learn if you still benefit from the Parasym and how your group of fellow experimenters is doing. Thanks
     
    Perrier, Tara Green and Cheesus like this.
  6. Tara Green

    Tara Green Senior Member (Voting Rights)

    Messages:
    141
    Merged thread
    I can't see if there is a thread on individual experiences of the VNS. I am currently fluctuating from lower severe with occasional moderate. My VNS arrived today. I managed 1 minute on setting 1microamps (couldn't manage any higher) at 50 micro seconds, 15hz. Then there was pain, my ear flashed heat and the pain extended to the right back of my head so I stopped. I felt ill afterwards. A few hours later the exact same thing happened again. I will keep on trying daily. It def states to stop if start experiencing negative effects.

    My husband with LC and is mild to lower end moderate had the setting on 8microamps (then had to turn down to 7), 50 micro seconds and 15Hz for 10 minutes. Second session he did 100 microseconds (200 w3as too much) at 30Hz went up gradually to 3 microamps. No reaction other than feeling like pins in his ear.
     
    Last edited by a moderator: Mar 6, 2022
    MeSci and Peter Trewhitt like this.
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,671
    Have you seen that @PhysiosforME are currently collecting people’s experiences of this? See https://www.physiosforme.com/post/v...j_-poEw2XgOhAEDZ13wfowGKxadFECKYHGP6ReKvFOXlA

    (Added - Also there are quite a few threads here addressing vagal nerve stimulation so it might be worth doing a search for this here. I did one just now but am not with it enough today to be able work out which were relevant.)
     
    Last edited: Feb 7, 2022
    Tara Green, MeSci, Hutan and 2 others like this.
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,938
    Location:
    Aotearoa New Zealand
    Yes, we do have a number of threads on this topic. Click on the vagus nerve tag at the top left of this thread.
     
    Last edited: Mar 6, 2022
  9. Tara Green

    Tara Green Senior Member (Voting Rights)

    Messages:
    141
    I have seen that, thanks Peter. I think the survey has to be filled soon and I really won't be able to make any kind of judgement on it by then.
     
    Peter Trewhitt likes this.
  10. Tara Green

    Tara Green Senior Member (Voting Rights)

    Messages:
    141
    I won't diary each day on this but I've managed two sessions of 5 minutes each without much ado. Hot flash ear appeared at end and to a lesser degree. I've had an unusual headache and sick feeling all day. The headache pain was exactly where it hurt when I switched it on last night - back right - lower.

    I am keen to just switch it on full and get on with it but easing into it gently just in case there are unforseen negative effects. I usually lie on one of those yoga pillows with the plastic spikes because that area is so numb and raw (lower brain stem area) (not when sleeping). I will take it to 10 minute sessions and then see how far I can increase it. I would imagine I should have a yes or no within a month or two of using it. I also have tinnitus quite badly, OI and I've heard it's good for these too so maybe I'll get lucky somewhere. Unless something happens and I discontinue, I will pop back when I finish the trial.
     
    MeSci, bobbler, Trish and 2 others like this.
  11. Tara Green

    Tara Green Senior Member (Voting Rights)

    Messages:
    141
    Hutan and Peter Trewhitt like this.
  12. Tara Green

    Tara Green Senior Member (Voting Rights)

    Messages:
    141
    Just to note, I think I might have a faulty machine. It went off last night and came back on really mild, husband said the same. I made sure it was fully charged and have used it today on recommended settings and got it to 4m/amps without feeling much at all. Massive headache and sick feeling it gave me is almost gone.
     
    MeSci, Trish, Starlight and 3 others like this.
  13. Kiristar

    Kiristar Established Member (Voting Rights)

    Messages:
    34
    I had a parasym and was told to leave it on 200 and 20 and only adjust the intensity level and time as variables.
    I got up to about an hour but found I often seemed to accidentally trigger the sympathetic system by having intensity even marginally too strong (a clear tingle). I seemed to have a spell where alot else went wrong bodily (a probable gallbladder attack) so I discontinued it on their advice I may have another go if I stabilise or improve.
    I'm pretty disappointed as it was a big investment.
     
  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    bobbler and Peter Trewhitt like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,512
    Location:
    London, UK
    To continue the autonomic metaphor I wouldn't hold any breath. This idea has been going for nearly twenty years and the best they could do was:

    “The first trial was designed to assess the safety of this new device, and we were fortunate to have seen some efficacy in this 14-patient trial of patients with refractory disease.”
     
  16. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,938
    Location:
    Aotearoa New Zealand
  17. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    1,585
    Location:
    North-West England
    I hope they were adequately compensated for their time. Perhaps in carrots.
     
    Ron, EzzieD, Amw66 and 10 others like this.
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

    Messages:
    2,753
    Location:
    UK
    Thanks for the laugh
     
  19. Wyva

    Wyva Senior Member (Voting Rights)

    Messages:
    1,393
    Location:
    Budapest, Hungary
    Press release: electroCore, Inc. Announces Study of gammaCore Sapphire™ for the Treatment of Post-COVID Syndrome

    ROCKAWAY, N.J., July 07, 2022 (GLOBE NEWSWIRE) -- electroCore, Inc. (Nasdaq: ECOR), a commercial-stage bioelectronic medicine company, today announced Mayo Clinic is initiating an investigator-initiated study to assess the efficacy of gammaCore Sapphire non-invasive vagus nerve stimulation (nVNS) in patients with post-COVID syndrome. Post-COVID syndrome, also known as Long COVID, is a collection of symptoms that persist greater than 28 days after the initial onset of symptoms of SARS-CoV-2 (COVID) infection1,2. These symptoms, such as headache, brain fog, fatigue and gastric distress can bear a striking resemblance to the “central sensitization syndromes,” a group that includes fibromyalgia, chronic fatigue syndrome, and postural orthostatic tachycardia syndrome (POTS). Post-COVID syndrome is likely to occur in upwards of 10% of the population who has been infected with COVID, likely affecting hundreds of millions across the world.

    The study entitled “Outcomes of treatment with non-invasive vagal nerve stimulation (nVNS) in post-COVID syndrome: A Pilot Study,” is a randomized, single-center, controlled trial enrolling up to 20 subjects recruited from the Post-COVID Care Clinic at Mayo Clinic in Rochester, Minnesota. Endpoints of the study include a number of clinical questionnaires including the Post-COVID Functional Status Score, as well as an analysis of blood samples for certain chemokines, and positron emission tomography-computed tomography (PET-CT) of the brain to evaluate brain metabolism.

    “Long-COVID represents a significant ongoing medical challenge that can extend long after the acute phase of COVID,” said Dr. Peter Staats, Chief Medical Officer at electroCore, Inc. “We believe the decision to use gammaCore Sapphire is consistent with its demonstrated mechanisms of action and its use in acute-COVID under an Emergency Use Authorization granted by the Food and Drug Administration.”
     
  20. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Messages:
    3,511
    Location:
    Belgium

Share This Page