MTRJ75 Posted January 18, 2021 Report Share Posted January 18, 2021 I mentioned reading something centered on treating the Vagus nerve in another thread recently. That's from this article: https://www.faim.org/fibromyalgia-chronic-fatigue-and-multiple-chemical-sensitivities-a-unified-hypothesis And then, just today, Dysautonomia International posted this Vagus nerve study on their FB page: https://bmjopen.bmj.com/content/11/1/e038677.long?fbclid=IwAR2JiWaE7A3Ft3-SwqNGHKQzoxRN1hfYMnTqOV2tlCSaEYY7U1ibvAPIRO4 It almost sounds counter-productive when everything feels like it's going nuts inside you and the recommended treatment is further stimulation. This would be great news though...if I could find someplace that offers the treatment at a reasonable cost. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 18, 2021 Report Share Posted January 18, 2021 @MTRJ75 - interesting articles. Thank you for always sharing your research with us 😉👍 Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted January 18, 2021 Author Report Share Posted January 18, 2021 I'm just hoping other people will be the guinea pigs and come back with good news. 😄 Ironically, decided to start watching the 2020 Dysautonomia Conference videos today and the first presentation is about vagus nerve manipulation. Turns out they've been turning autoimmune diseases off with this process for the last decade. Yet, we sit here and suffer the way we do without doctors or insurance companies even giving us such options. It's a bit infuriating how slowly medicine works. I understand the safety protocols, but when quality of life is so low in people, sometimes the potential rewards outweigh the risks, especially when the drug therapies currently being used have potentially damaging side and long term effects anyway. Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 19, 2021 Report Share Posted January 19, 2021 5 hours ago, MTRJ75 said: I understand the safety protocols, but when quality of life is so low in people, sometimes the potential rewards outweigh the risks, especially when the drug therapies currently being used have potentially damaging side and long term effects anyway. I soo agree! This was the case for me: they kept ordering IV fluids temporarily for flares b/c they worked so well, but they refused to order a port so I could get them every week. The risks of infection and blood clots were too high. When my PCP finally agreed to the port and ordered home infusions I became a changed person. My quality of life increased immediately, and I have been so much better for the past 2 years b/c of the fluids! I never responded too good to meds, although they did help, just not enough. With the IV fluids I am well ( as long as I live within my limits, still am housebound but no longer have seizures or pass out ). Quote Link to comment Share on other sites More sharing options...
p8d Posted January 19, 2021 Report Share Posted January 19, 2021 Thank you for posting this. I found the article and the DI conference presentations very interesting and hopeful. I was going to get a Parasym device https://www.parasym.co/parasym-device-transcutaneous-vagus-nerve-stimulation.html the next time my husband went to the UK (they don’t ship to the US) but covid hit 2 weeks before his trip. I did buy this in the US https://vagus.net/ but it only stays on for 15 minutes at a time and you can’t control output much and it irritates my skin. It might help a bit but I can’t wear it long enough to really know. I do know there has been discussion on here about vagus nerve stimulation before. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted January 19, 2021 Author Report Share Posted January 19, 2021 Thank you @p8d Unfortunately, at $300+ with shipping, that device doesn't seem like something I could just buy and try on a whim. My mother used to work for a chiropractor (many of them in fact) and I have a home TENS unit, but I haven't been able to find ear clips that fit the unit. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted January 19, 2021 Report Share Posted January 19, 2021 Thanks for sharing . After reading this I reallly would like to buy one of these to try , maybe once we get some normality back from this pandemic and our lockdowns and when I am working again . I did look up for practitioners offering treatment but they are all 3 hour drive away couldn’t cope with that once a week ! Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 20, 2021 Report Share Posted January 20, 2021 I added ear clips to my TENS - even if you had to buy a CMS3000 like I have, the whole machine is only about $30. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted January 20, 2021 Report Share Posted January 20, 2021 Feel free to PM for sources of ear clips. Mine are black if that helps. Quote Link to comment Share on other sites More sharing options...
toomanyproblems Posted January 21, 2021 Report Share Posted January 21, 2021 I have the ear clips bought from a previous thread recommendation. However the only thing I have to use them with is what is probably a glorified tens unit but it's called an inferential unit. It's called the IF-4000. I've actually had a tens unit but this one works better for back and spasm problems. I've looked into scientific articles for the settings to use for this unit with my ear clips but it seems extremely complicated, even with my science background. Is there anyone with a protocol they find useful, particularly with the IF-4000 unit I have? Any help would be so much appreciated. I feel my sympathetic overstimulation is getting worse by the day and I don't know where this ends up if it continues. Feel free the PM me if you don't feel comfortable sharing settings publicly. Quote Link to comment Share on other sites More sharing options...
Sushi Posted January 22, 2021 Report Share Posted January 22, 2021 Just a note: some of us, probably the minority, have a vagus nerve that is too activated. I have tried to find out how a vagus nerve stimulator would affect those like me? My parasympathetic system is dominant. Quote Link to comment Share on other sites More sharing options...
p8d Posted February 14, 2021 Report Share Posted February 14, 2021 @dancerI believe that in the UK you can rent Parasym to try it out before buying. As far as I know no prescription is required. Quote Link to comment Share on other sites More sharing options...
Nin Posted February 21, 2021 Report Share Posted February 21, 2021 On 2/14/2021 at 11:17 PM, p8d said: @dancerI believe that in the UK you can rent Parasym to try it out before buying. As far as I know no prescription is required. Never seen one of these before. Do you know what benefits you can get from this device? I'm in the UK so wouldn't mind looking into this. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted September 7, 2021 Author Report Share Posted September 7, 2021 On 1/22/2021 at 3:53 PM, Sushi said: Just a note: some of us, probably the minority, have a vagus nerve that is too activated. I have tried to find out how a vagus nerve stimulator would affect those like me? My parasympathetic system is dominant. I know this was a really long time ago, but something I was reading last night made me think of this. The theory being that we are all over-stimulated, but what we actually need in that case might be enough stimulation to overload us, which might then set the nervous system back to normal. This is a different treatment being discussed, but if I have the concept right, it's pretty mind blowing. https://www.healthrising.org/blog/2021/09/03/cortene-drug-trial-chronic-fatigue-syndrome/ Quote Cortene chose an interesting way to damp down what they believe is an overactive CRFR2 pathway. Instead of using an antagonist to block the pathway – as is usually done – their objective was to use an agonist to overstimulate the pathway. It might seem strange to attempt to overstimulate an already hyped-up pathway, but that approach simply takes advantage of how neurons function. If they get overstimulated, they basically fold; i.e. they turn themselves off. Faced with the CT38 agonist, the neurons should move the CRFR2 receptors back inside the cell – returning it to its normal resting state – and turning off a multitude of problems. Cortene’s approach is different, but it potentially has some real advantages. Pathway blockers (antagonists) may stop the final expression of the pathway, but because they don’t turn it off, they often need to be taken for life. An agonist which overstimulates the pathway, on the other hand, might allow it to reset itself and return to a healthy state. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 7, 2021 Report Share Posted September 7, 2021 Interesting article. I sure could use some stimulation this morning. Quote Link to comment Share on other sites More sharing options...
Sushi Posted December 13, 2023 Report Share Posted December 13, 2023 Anyone have an update? It looks like they do now ship to the US. Here is a research article: https://www.parasym.co/long-covid.html that looks interesting. It is expensive but more sophisticated than a tens machine and can be used it you have a pacemaker (which I do) whereas a tens machine cannot. They have a 30 day money back guarantee. This is a certified medical device which a lot of research. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted December 14, 2023 Author Report Share Posted December 14, 2023 Yup. That sure is expensive. Worth it if it works though. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted December 28, 2023 Report Share Posted December 28, 2023 On 1/20/2021 at 6:48 AM, RecipeForDisaster said: I added ear clips to my TENS - even if you had to buy a CMS3000 like I have Is this product still working for you? If so, how often do you use it, and have you a link to the item please? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted December 28, 2023 Report Share Posted December 28, 2023 9 hours ago, little_blue_jay said: Is this product still working for you? If so, how often do you use it, and have you a link to the item please? I haven’t used it in a while, but I need to try again because there are good studies. The big city neurologist said I’m too sick for it to help me at this point. any TENS machine will work. Here are the earclips. https://www.tenspros.com/black-ear-clip-electrodes-EAE01.html?gad_source=1&gclid=Cj0KCQiA1rSsBhDHARIsANB4EJb-x0IbovkQ1B5VDCEI8Si8Xv3Z_P9Rtd60OD91a5ut6hisAtE_TxYaAsVCEALw_wcB Quote Link to comment Share on other sites More sharing options...
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