Have I just stumbled on the best possible therapy for CFS/ME/POTS sufferers?
- Thread starter Tired of being sick
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Tired of being sick
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My Email was never answered,so no it is not being considered..
sillysocks84
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I realize this is an old post, but I think since the vagus nerve arrest b cell activity it would actually be pretty beneficial to the cfs me pots people that would respond to rituximab. Rituximab also work through taking out b cells. So I really am hoping trials are being done for this for us as this would be something to try before rituximab since rituximab can have side effects. Could be that it would take a longer time of being consistent in stimulating the vagus nerve. Rituximab, too, does not work for all of us.
sillysocks84
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@Tired of being sick you should try them again and tell them about the b cell link and it'll probably work since rituximab is having good results, also b cell related.
Tired of being sick
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If you have private insurance, for the most part, P-STIM is covered
for at least reimbursement..
I have a feeling this study will produce significant results.
however
medicaid and medicare will find a way to debunk it as they
did in all other positive results..
Another option is surgery to stimulate the Vagus nerve or (VNS)
Right now the only way you can get surgery implantable device
to stimulate the Vagus nerve is epilepsy..
Although a study of major depression patients with an implantable device
to stimulate the Vagus nerve who did not respond to all other treatments.
An astounding 33% responded very well to the treatment....
however medicaid and medicare did not approve the treatment
to be covered for major depression..
sillysocks84
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Exciting! It's being looked at for pots!
Florida Guy
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I've used this myself though I didn't pay $960 per treatment. I bought the device for cheap and used it myself. Look online and you will find many stories of people doing this. All they are doing is putting a tiny bit of electricity through the ear to stimulate the vagus nerve which then causes changes in the body
I bought what is called a tens unit. It can put out small or larger currents and is used originally to stimulate the muscles as a form of exercise without effort. I used it along with ear clips adjusting the current flow so its not too high. It helps with heart rate and bp, the vagus can influence any of the organs in the abdomen and also the brain. My unit along with the ear clips cost about $30 altogether.
It may help depression and pots as well but all I know is it works on hr and bp I didn't test for anything else
I bought what is called a tens unit. It can put out small or larger currents and is used originally to stimulate the muscles as a form of exercise without effort. I used it along with ear clips adjusting the current flow so its not too high. It helps with heart rate and bp, the vagus can influence any of the organs in the abdomen and also the brain. My unit along with the ear clips cost about $30 altogether.
It may help depression and pots as well but all I know is it works on hr and bp I didn't test for anything else
@Florida Guy did you notice any symptom changes?
Florida Guy
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Yes, my pulse rate which was always high went down and blood pressure which was always a little high went down as well. Those are the only things I tried to measure but the vagus does a lot of other things. Since mecfs those numbers tended to be low though on occasion I see a higher heart rate so I haven't used it in a while. I will use it again today and check my bp and pulse to see how it is going
The tens unit was originally intended to be an easy way to exercise. People who are very severe can't exercise at all and may lose the ability to stand and walk. Using something like the tens may be a way to strengthen muscles that have lost their ability. I saw a post someone said they got pem from using a tens same as if they had done exercise and the muscles ached. That is likely from a too high setting for too long. You can set the power so low you can't feel it, that works for the vagus-ear treatment. A higher setting makes the muscles contract and release on a pulsing basis
A low setting and short session might be just right for exercising the muscle without pem. Its a form of pacing since we can do a certain amount of movement or exercise without going over our limits. Someone completely or mostly bedbound could over a period of time carefully tone their muscles until they are able to walk again possibly. Its a theory, might not work or might be too complicated for some. But tens units are used in physical therapy along with regular stretching and exercise. This system has been used with paralyzed patients to maintain muscle mass
Also, since you are only working one muscle group at a time, its unlikely to wear you out or give a crash. At the most, the muscles being worked on might feel some pem but not in the rest of the body. I'm thinking that if a certain setting for 10 minutes gives pem the next day, then try 5 minutes until you hit the sweet spot
The tens I bought cost about $20 and I've seen them cheaper, the ear clips were $8 and you are all set. The tens includes the connector pads that people use for exercise but you need the ear clips for comfort.
I can confirm that the the vagus nerve can do that, it can lower heart rate, make you feel less stress, fall asleep easier, for some strange reason even my eyesight is a little better too. I have not used a device to train the vagus nerve, but I use the exercises from the book: "Accessing the Healing Power of the Vagus Nerve" by Stanley Rosenberg.
However, for me, there are some downsides to reaching the relaxed state(called the "ventral vagal state"): it makes my veins pop out more and my digestion issues worse. When in a relaxed state, my gut makes a lot of noises and some gas appears where my ascending colon ends and my transversal colon starts(upper right side of abdomen). Now if I'm lucky and the gas easily passes to the exit there won't be any discomfort(apart from flatulence), otherwise I feel a lot of discomfort as the gas is bubbling around. The vagus nerve is said to put the body in the "rest & digest" state, it is this "digest" that causes problems for me, I never could figure out what gas is that, it might be Nitric Oxide(NO) or something else, a metabolite that my body releases and bacteria in the gut turn it into a gas. It usually doesn't have any smell, it seems to be air, but because of it, I only use the exercises when I'm alone so no one can hear the flatulence and my gut.
Anyway, this might just be me, but it's something to consider when trying to train the vagus nerve, it can amplify some issues with digestion.