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Has anyone tried at-home vagus nerve stimulators for Long COVID?

Posted by emo @emo, Sep 29, 2024

I did a quick search and didn’t find a post dedicated to this, just a few comments, so here goes: Has anyone tried at-home vagus nerve stimulation for Long COVID or another condition such as POTS, GI symptoms or headaches?

I fell down this rabbit hole because I have POTS and there are some studies suggesting it helped POTS but at-home devices weren’t readily available. Some have used TENS units but it’s hard to find the ear clips or guidance to do this. Some providers don’t recommend it. I asked my Long COVID NP about it and she was clueless, but their clinic mainly focuses on “established” treatments. This was months ago though and there’s since been more published.

There are also at-home devices like Tru-vaga that are expensive but more widely available. The same manufacture makes one that’s by prescription for headaches (GammaCore) which is also being used in clinical trials.

Some helpful information and context here:
https://www.scientificamerican.com/article/zapping-the-vagus-nerve-could-relieve-some-long-covid-symptoms/
And a recent pilot study from May 2024 here: https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2024.1393371/full

And review of existing data from 2020: https://www.frontiersin.org/journals/neuroscience/articles/10.3389/fnins.2020.00284/full

I know there are other ways to activate the vagus nerve that we know of, such as deep breathing, singing, etc. But something like Truvaga, which is consistent and takes two minutes a day and you know it’s at a frequency that’s been tested to activate the vagus nerve…it sounds very appealing.

Does anyone have experience with this?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

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wilsonanderson | @wilsonanderson | Sep 9 1:50pm
In reply to @vostie "For your specific symptoms, have you tried low-dose naltrexone? I have been on it for eight..." + (show)
Profile picture for vostie @vostie

For your specific symptoms, have you tried low-dose naltrexone? I have been on it for eight months now and it has taken care of most of my shortness of breath, body aches and pains from the constant chronic inflammation are almost completely gone unless I eat something my post covid body is now allergic to and fatigue is about 50% better. You do have to try trade up slowly and there are some initial side effects but they are pretty well gone in about two weeks.

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I tried LDN c.6 years ago, before I got LC, and was probably still taking it into LC since I had numerous chronic diseases then said to benefit from it, including fibromyalgia but though I slowly titrated to full dose didn’t obviously get any better. I might well give it another go! I have tried to do a one drug/ supplement change at a time … it’s so slow going it’s quite easy to spend 2 years getting back to where you were, as I am with antihypertensives… I have to try to think which drug is responsible for making me more breathless, reduces BP but increases HR, and which is preferable as my medics not very concerned ( in Uk)…

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vostie | @vostie | Sep 9 3:02pm
In reply to @wilsonanderson "I tried LDN c.6 years ago, before I got LC, and was probably still taking it..." + (show)
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I tried LDN c.6 years ago, before I got LC, and was probably still taking it into LC since I had numerous chronic diseases then said to benefit from it, including fibromyalgia but though I slowly titrated to full dose didn’t obviously get any better. I might well give it another go! I have tried to do a one drug/ supplement change at a time … it’s so slow going it’s quite easy to spend 2 years getting back to where you were, as I am with antihypertensives… I have to try to think which drug is responsible for making me more breathless, reduces BP but increases HR, and which is preferable as my medics not very concerned ( in Uk)…

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Being five years post long Covid, I totally understand you. Current studies with long Covid users are showing some of us react well to extremely low-dose naltrexone such as .01 or .05 MG… while others need to get up around three or 4.5 mg to see some improvement. My sweet spot was 3 mg per day for about the first four months and then I titrated slowly up to 4.5 and feel better than I have in years. Hoping it works for you too!

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anniecreates | @anniecreates | Sep 9 4:37pm
In reply to @mspaminreno "Sorry...I am not using one; they are too expensive for my budget. (I'm 82 years old;..." + (show)
Profile picture for mspaminreno @mspaminreno

Sorry...I am not using one; they are too expensive for my budget. (I'm 82 years old; 4 years post Covid and on Social Security)
But, I thought to add this tidbit: When I take my shower, I turn on the cold water at the very end and with my handheld showerhead, I put the cold water on both sides of my neck. It works to stimulate my vagus nerve and I'm usually feeling 'normal' (good) for about 2 hours allowing me to get out and do an errand or two. My best to you.

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I was wondering about this. I have a son and a very close friend who are both advocates of cold water therapy for many things. I know that this can affect the vagus nerve so I’m glad to hear that has actually worked for someone. Now I just have to decide if I can stand having cold water on my body without my arthritis raising its ugly head! Thank you for the comment!

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amyqk | @amyqk | Sep 9 5:26pm

Hi Everyone - I was diagnosed with LC in the summer of 2024 after having Covid twice. I went to Dr. Hurt at Mayo Clinic in Rochester, MN. Dr. Hurt recommended the Vagal Nerve Stimulator - specifically the Truvaga. There were two types available -- limited use for about $300 and an one with unlimited use for $500. I bought the $500 Truvaga on a payment plan - -paying about $50 per month. I use it 3 x per day for two minutes. I honestly can't tell what is working and what is not. It seems to depend on how much I do -- if I run a lot of errands, I'm still very tired the next day. I also drink 8 oz of Kefir every day (to help with pre-and pro-biotics -- for the gut-brain connection). I also take 2.5 Low Dose Nalrexone -- that seems to be my "sweet spot". I hope this helps someone else. Long Covid has prevented me from working full-time and greatly affected our finances. It is TOUGH! Hang in there everyone!

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dareyu | @dareyu | Sep 13 4:19pm
In reply to @amyqk "Hi Everyone - I was diagnosed with LC in the summer of 2024 after having Covid..." + (show)
Profile picture for amyqk @amyqk

Hi Everyone - I was diagnosed with LC in the summer of 2024 after having Covid twice. I went to Dr. Hurt at Mayo Clinic in Rochester, MN. Dr. Hurt recommended the Vagal Nerve Stimulator - specifically the Truvaga. There were two types available -- limited use for about $300 and an one with unlimited use for $500. I bought the $500 Truvaga on a payment plan - -paying about $50 per month. I use it 3 x per day for two minutes. I honestly can't tell what is working and what is not. It seems to depend on how much I do -- if I run a lot of errands, I'm still very tired the next day. I also drink 8 oz of Kefir every day (to help with pre-and pro-biotics -- for the gut-brain connection). I also take 2.5 Low Dose Nalrexone -- that seems to be my "sweet spot". I hope this helps someone else. Long Covid has prevented me from working full-time and greatly affected our finances. It is TOUGH! Hang in there everyone!

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My wife has been using T-VNS for 10 days. Using 3 times per day but for a longer time. Has reduced long covid symptoms of anxiety and tiredness (fatigue) and mental cloudiness. The duration of a session likely depends on the machine and patient and side effects. Side effects of overstim are listed several places on web. Perhaps there is a sweet spot for Vagal stim like LDN. Did your Mayo physician prescribe the duration, if so, you have your answer?

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