I have a tens unit that was ordered for muscle spasms in my back. The doctor told me to never put it on my neck or near my skull. He said it could actually make me pass out. Of course, that’s one doctors opinion and you know how that goes.
Actually, your doctor was correct - It CAN make people pass out.
The vagus nerve, which is what you're stimulating in your neck, can cause fainting. For example, if you had blood drawn and you get dizzy, its vagovagal response/syncope, which is because your system will be triggered and cause your heart rate to slow to the point you pass out.
I have MCAS with co-morbid POTS, IBS, Narcolepsy, and a lot of skin flushing/cold sweating. Symptom relief meds I've been taking are constantly problematic, especially since getting a virus two months ago. Treatment has felt like a vague experiment, and it's not going well.
I've heard a million good things about VNS for pots/mcas, but I haven't noticed a difference myself. I'm currently not doing it because my TENS unit wore out from pretty moderate use and I'm not sure what to replace it with. Will they all crap out that fast?
Has anyone here had genuine success with VNS via TENS unit? Long enough to know it's not placebo? Like most people with MCAS I'm at the point where I'll try about anything. All ears.
I have MCAS with co-morbid POTS, IBS, Narcolepsy, and a lot of skin flushing/cold sweating. Symptom relief meds I've been taking are constantly problematic, especially since getting a virus two months ago. Treatment has felt like a vague experiment, and it's not going well.
I've heard a million good things about VNS for pots/mcas, but I haven't noticed a difference myself. I'm currently not doing it because my TENS unit wore out from pretty moderate use and I'm not sure what to replace it with. Will they all crap out that fast?
Has anyone here had genuine success with VNS via TENS unit? Long enough to know it's not placebo? Like most people with MCAS I'm at the point where I'll try about anything. All ears.
Thanks, I tried to find an existing group and couldn't for some reason.
I was using it almost every day for about 30 minutes, for maybe two months. I did order a new unit and it should be here tomorrow.
Thanks, I tried to find an existing group and couldn't for some reason.
I was using it almost every day for about 30 minutes, for maybe two months. I did order a new unit and it should be here tomorrow.
I'm in the process of looking into this, as I strongly suspect that tVNS stimulation might be helpful in managing MCAS & Dysautonomia related issues (in addition to my current treatment regimen.)
I also have a whole host of other issues, including "IBS", possible delayed gastric emptying, brain fog, "idiopathic" hypersomnia (never been tested for narcolepsy, but it may be type 2 for all I know?) circadian rhythm sleep disorder, scoliosis, EDS...
Since you have narcolepsy, I expect you might be having an extra hard time with MCAS? I know it messes with my circadian rhythm disorder and makes everything impacted by sleep worse. Especially the brain fog & congition issues.
Because we're lucky like that, sleep deprivation & poor quality sleep are triggers for more MCAS flares. And since the mediator release from cranky mast cells can affect your circadian rhythm, the whole thing can get shifted/delayed, and desynchronized from your sleep/wake schedule with flares. When I'm reactive, it's even harder to get rest during my circadian night, and that impacts your REM vs Deep Sleep...
In the past, I haven't gotten relief from treatments that are helping me now. That might be because I wasn't on the same mast cell stabilizers, since I didn't know about MCAS. My GI and anaphylaxis issues were particularly bad then.
So, I wonder if taVNS would actually be really helpful, but only under certain circumstances when mast cells are stabilizing? It's not a direct histamine reducer, but the domino effects felt promising.
Timing of the treatment might also be really important, especially for those of us with sleep disorders that impact our sleep quality, sleep onset & circadian rhythm.
Which machine are you using right now? And what settings?
I've also been looking for people who are using tVNS/taVNS for MCAS & Dysautonomia management, and have not found many. In all fairness, this is a pretty new thing, so perhaps more people will be looking at this in the future.
Are you a part of the AVA group on Facebook? They have a lot of good info about machines that are safe for taVNS, though there is little mention of MCAS.
The machine I've been looking at is called the Dolphin Neurostim. It is different from a TENS device, and from what I've read, has the potential for much more effective results. It was just approved for use in treatment of Long Covid in Canada, and I'm seeing it advertised for use in scar tissue release therapy, myofascial release, depression, peripheral neuropathy, headaches, insomnia, taVNS, etc.
Unlike most TENS units, the microcurrent on the Dolphin is fairly low and very stable. It's also Direct Current, not Alternating Current, which appears to have different results when it comes to cellular regeneration & depth penetration.
It's also super expensive, and the lack of research on DC microcurrent taVNS for MCAS means that this isn't guaranteed for symptom reduction... so I've been agonizing about whether it's a worthwhile purchase. Especially since it will take time to learn how to use it effectively for my situation.
I haven't found any comparable device in Canada, unfortunately. Frequency Specific Microcurrent machines might actually be more up our alley for MCAS treatment, because the versatility in settings could be what we need to see results... but those things also run in the thousands of dollars, and I believe they are usually AC, not DC...
The only other options that are even remotely in the same ballpark in terms of likely efficacy are probably GammaCore/Truvaga, or Parasym... which are also super pricey.
Because I have a whole host of issues that multiply the effects of one another, I am thinking that I might have better luck using a Dolphin in particular in several ways:
-Fascial release techniques. I have a ton of adhesions, and especially those in your neck/spine can contribute to vagus nerve irritation. A Dolphin can break up that tissue, and might be good to use in combination with trigger point release techniques.
-taVNS, might be able to help via changing sleep architecture, possible reduction of sleep apnea
-taVNS before bed might insomnia & promote relaxation before sleep time
-reduction of systemic inflammation, and use in accelerating the healing of sore muscles/tendons/ligaments.
These are just some of the ways it can maybe be used... I'm thinking if I can get the whole body to calm down & manage the other biological triggers/aggravating factors for MCAS, then taVNS may be more likely to yield results.
I'm in the process of looking into this, as I strongly suspect that tVNS stimulation might be helpful in managing MCAS & Dysautonomia related issues (in addition to my current treatment regimen.)
I also have a whole host of other issues, including "IBS", possible delayed gastric emptying, brain fog, "idiopathic" hypersomnia (never been tested for narcolepsy, but it may be type 2 for all I know?) circadian rhythm sleep disorder, scoliosis, EDS...
Since you have narcolepsy, I expect you might be having an extra hard time with MCAS? I know it messes with my circadian rhythm disorder and makes everything impacted by sleep worse. Especially the brain fog & congition issues.
Because we're lucky like that, sleep deprivation & poor quality sleep are triggers for more MCAS flares. And since the mediator release from cranky mast cells can affect your circadian rhythm, the whole thing can get shifted/delayed, and desynchronized from your sleep/wake schedule with flares. When I'm reactive, it's even harder to get rest during my circadian night, and that impacts your REM vs Deep Sleep...
In the past, I haven't gotten relief from treatments that are helping me now. That might be because I wasn't on the same mast cell stabilizers, since I didn't know about MCAS. My GI and anaphylaxis issues were particularly bad then.
So, I wonder if taVNS would actually be really helpful, but only under certain circumstances when mast cells are stabilizing? It's not a direct histamine reducer, but the domino effects felt promising.
Timing of the treatment might also be really important, especially for those of us with sleep disorders that impact our sleep quality, sleep onset & circadian rhythm.
Which machine are you using right now? And what settings?
I've also been looking for people who are using tVNS/taVNS for MCAS & Dysautonomia management, and have not found many. In all fairness, this is a pretty new thing, so perhaps more people will be looking at this in the future.
Are you a part of the AVA group on Facebook? They have a lot of good info about machines that are safe for taVNS, though there is little mention of MCAS.
The machine I've been looking at is called the Dolphin Neurostim. It is different from a TENS device, and from what I've read, has the potential for much more effective results. It was just approved for use in treatment of Long Covid in Canada, and I'm seeing it advertised for use in scar tissue release therapy, myofascial release, depression, peripheral neuropathy, headaches, insomnia, taVNS, etc.
Unlike most TENS units, the microcurrent on the Dolphin is fairly low and very stable. It's also Direct Current, not Alternating Current, which appears to have different results when it comes to cellular regeneration & depth penetration.
It's also super expensive, and the lack of research on DC microcurrent taVNS for MCAS means that this isn't guaranteed for symptom reduction... so I've been agonizing about whether it's a worthwhile purchase. Especially since it will take time to learn how to use it effectively for my situation.
I haven't found any comparable device in Canada, unfortunately. Frequency Specific Microcurrent machines might actually be more up our alley for MCAS treatment, because the versatility in settings could be what we need to see results... but those things also run in the thousands of dollars, and I believe they are usually AC, not DC...
The only other options that are even remotely in the same ballpark in terms of likely efficacy are probably GammaCore/Truvaga, or Parasym... which are also super pricey.
Because I have a whole host of issues that multiply the effects of one another, I am thinking that I might have better luck using a Dolphin in particular in several ways:
-Fascial release techniques. I have a ton of adhesions, and especially those in your neck/spine can contribute to vagus nerve irritation. A Dolphin can break up that tissue, and might be good to use in combination with trigger point release techniques.
-taVNS, might be able to help via changing sleep architecture, possible reduction of sleep apnea
-taVNS before bed might insomnia & promote relaxation before sleep time
-reduction of systemic inflammation, and use in accelerating the healing of sore muscles/tendons/ligaments.
These are just some of the ways it can maybe be used... I'm thinking if I can get the whole body to calm down & manage the other biological triggers/aggravating factors for MCAS, then taVNS may be more likely to yield results.
I just got the 'Intensity twin stim III' from TENSpro.com. It's a TENS unit with adjustable pulse width and rate. It also does EMS. There were units that did microcurrent on the website, but I don't really know anything about it. None of them were that expensive though.
The settings I use are 200 pw and 20 pr. I got these settings from some doctors who were running a clinical trial on VNS. I qualified for it but couldn't travel to participate. They were using the Parasym, which isn't available in the US (won't even ship here), but they said a TENS unit was capable of the same thing. I had to make the ear clip out of two separate ear clips to make it like the one that comes with the parasym (there's instructions online, pretty easy). But it was all under $100. I just hope this new unit lasts longer.
I don't think the dolphin is worth it considering it's so different from the kind of unit that is supposed to be showing results, and it's still pretty new. Have you used a regular TENS unit with an ear clip?
I'm not on Facebook.
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Actually, your doctor was correct - It CAN make people pass out.
The vagus nerve, which is what you're stimulating in your neck, can cause fainting. For example, if you had blood drawn and you get dizzy, its vagovagal response/syncope, which is because your system will be triggered and cause your heart rate to slow to the point you pass out.
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1 ReactionI did that with my TENS unit.
I have MCAS with co-morbid POTS, IBS, Narcolepsy, and a lot of skin flushing/cold sweating. Symptom relief meds I've been taking are constantly problematic, especially since getting a virus two months ago. Treatment has felt like a vague experiment, and it's not going well.
I've heard a million good things about VNS for pots/mcas, but I haven't noticed a difference myself. I'm currently not doing it because my TENS unit wore out from pretty moderate use and I'm not sure what to replace it with. Will they all crap out that fast?
Has anyone here had genuine success with VNS via TENS unit? Long enough to know it's not placebo? Like most people with MCAS I'm at the point where I'll try about anything. All ears.
-
Like -
Helpful -
Hug
1 ReactionHello @cptpierce. I wanted to bring you into an existing discussion on VNS, so you will notice I have moved your post here:
- Vagus Nerve and TENS unit: https://connect.mayoclinic.org/discussion/vegal-nerve-and-tens-unit/
I would like to bring in members @cbh2323 @bonnieb81 and @becky1024
who may be able to share more with you about their own experiences.
How long have you been on this treatment?
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4 ReactionsThanks, I tried to find an existing group and couldn't for some reason.
I was using it almost every day for about 30 minutes, for maybe two months. I did order a new unit and it should be here tomorrow.
-
Like -
Helpful -
Hug
1 ReactionI'm in the process of looking into this, as I strongly suspect that tVNS stimulation might be helpful in managing MCAS & Dysautonomia related issues (in addition to my current treatment regimen.)
I also have a whole host of other issues, including "IBS", possible delayed gastric emptying, brain fog, "idiopathic" hypersomnia (never been tested for narcolepsy, but it may be type 2 for all I know?) circadian rhythm sleep disorder, scoliosis, EDS...
Since you have narcolepsy, I expect you might be having an extra hard time with MCAS? I know it messes with my circadian rhythm disorder and makes everything impacted by sleep worse. Especially the brain fog & congition issues.
Because we're lucky like that, sleep deprivation & poor quality sleep are triggers for more MCAS flares. And since the mediator release from cranky mast cells can affect your circadian rhythm, the whole thing can get shifted/delayed, and desynchronized from your sleep/wake schedule with flares. When I'm reactive, it's even harder to get rest during my circadian night, and that impacts your REM vs Deep Sleep...
In the past, I haven't gotten relief from treatments that are helping me now. That might be because I wasn't on the same mast cell stabilizers, since I didn't know about MCAS. My GI and anaphylaxis issues were particularly bad then.
So, I wonder if taVNS would actually be really helpful, but only under certain circumstances when mast cells are stabilizing? It's not a direct histamine reducer, but the domino effects felt promising.
Timing of the treatment might also be really important, especially for those of us with sleep disorders that impact our sleep quality, sleep onset & circadian rhythm.
Which machine are you using right now? And what settings?
I've also been looking for people who are using tVNS/taVNS for MCAS & Dysautonomia management, and have not found many. In all fairness, this is a pretty new thing, so perhaps more people will be looking at this in the future.
Are you a part of the AVA group on Facebook? They have a lot of good info about machines that are safe for taVNS, though there is little mention of MCAS.
The machine I've been looking at is called the Dolphin Neurostim. It is different from a TENS device, and from what I've read, has the potential for much more effective results. It was just approved for use in treatment of Long Covid in Canada, and I'm seeing it advertised for use in scar tissue release therapy, myofascial release, depression, peripheral neuropathy, headaches, insomnia, taVNS, etc.
Unlike most TENS units, the microcurrent on the Dolphin is fairly low and very stable. It's also Direct Current, not Alternating Current, which appears to have different results when it comes to cellular regeneration & depth penetration.
It's also super expensive, and the lack of research on DC microcurrent taVNS for MCAS means that this isn't guaranteed for symptom reduction... so I've been agonizing about whether it's a worthwhile purchase. Especially since it will take time to learn how to use it effectively for my situation.
I haven't found any comparable device in Canada, unfortunately. Frequency Specific Microcurrent machines might actually be more up our alley for MCAS treatment, because the versatility in settings could be what we need to see results... but those things also run in the thousands of dollars, and I believe they are usually AC, not DC...
The only other options that are even remotely in the same ballpark in terms of likely efficacy are probably GammaCore/Truvaga, or Parasym... which are also super pricey.
Because I have a whole host of issues that multiply the effects of one another, I am thinking that I might have better luck using a Dolphin in particular in several ways:
-Fascial release techniques. I have a ton of adhesions, and especially those in your neck/spine can contribute to vagus nerve irritation. A Dolphin can break up that tissue, and might be good to use in combination with trigger point release techniques.
-taVNS, might be able to help via changing sleep architecture, possible reduction of sleep apnea
-taVNS before bed might insomnia & promote relaxation before sleep time
-reduction of systemic inflammation, and use in accelerating the healing of sore muscles/tendons/ligaments.
These are just some of the ways it can maybe be used... I'm thinking if I can get the whole body to calm down & manage the other biological triggers/aggravating factors for MCAS, then taVNS may be more likely to yield results.
-
Like -
Helpful -
Hug
1 ReactionI just got the 'Intensity twin stim III' from TENSpro.com. It's a TENS unit with adjustable pulse width and rate. It also does EMS. There were units that did microcurrent on the website, but I don't really know anything about it. None of them were that expensive though.
The settings I use are 200 pw and 20 pr. I got these settings from some doctors who were running a clinical trial on VNS. I qualified for it but couldn't travel to participate. They were using the Parasym, which isn't available in the US (won't even ship here), but they said a TENS unit was capable of the same thing. I had to make the ear clip out of two separate ear clips to make it like the one that comes with the parasym (there's instructions online, pretty easy). But it was all under $100. I just hope this new unit lasts longer.
I don't think the dolphin is worth it considering it's so different from the kind of unit that is supposed to be showing results, and it's still pretty new. Have you used a regular TENS unit with an ear clip?
I'm not on Facebook.