Maybe I'll Buy A Vagus Nerve Stimulator T... - Cure Parkinson's

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Maybe I'll Buy A Vagus Nerve Stimulator To Use While Sitting With My Coronet Duo Red Light...

jimcaster profile image
40 Replies

One month of non-invasive vagus nerve stimulation (nVNS), administered at home using a hand-held device by electroCore, improved walking and motor abilities, and eased freezing of gait in adults with Parkinson’s disease, according to data from a small clinical trial.

ElectroCore’s nVNS device, called gammaCore Sapphire, is approved in the U.S. and Europe for the treatment of migraines and headaches. Designed as a portable and easy-to-use technology, gammaCore can be self-administered by patients by placing the device over the vagus nerve in their neck.

A prescription is required. Cost appears to be between $1,250 and $1,750 USD.

parkinsonsnewstoday.com/202...

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jimcaster
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40 Replies
gwendolinej profile image
gwendolinej

Hi Jim, it’s also approved here in Australia. Will look at it and maybe try it after we’ve given the coronet and Therapad a few months.

We saw the neurologist yesterday. We haven’t seen him for 12 months… our choice. My husband has been so much better with mannitol, there didn’t seem to be any point. We kept him in the loop. Again he was impressed with my husband’s improvement. He also said he has a number patients that use the coronet with good results.

I’ll send the link to him and get his comments.

Thanks Jim.

Gwendoline

AmyLindy profile image
AmyLindy in reply to gwendolinej

Gwen- mannitol, exclusively, improved symptoms ?

gwendolinej profile image
gwendolinej in reply to AmyLindy

Yes, we didn’t change anything else.

Gwendoline

Resano profile image
Resano

A much cheaper device: m.youtube.com/watch?v=EnCju...

Resano profile image
Resano

Also, an excellent read about the Vagus Nerve written by a knowledgeable chiropractor:efttappingtraining.com/wp-c...

bookish profile image
bookish in reply to Resano

That's a really great piece, thank you. I've been using EFT on and off for a while but it is a good reminder to go back to it and keep it regular. I also do Datis Kharrazian's suggested humming, singing, enthusiastic gargling and gag activation.

Resano profile image
Resano in reply to bookish

Excellent. However, with such a nice condition as PD, you should tap at least 10 times each day. And since we are supposed to be Dissociated people, one should follow Stewart Robertson's instructions (really feel and not simply picture one's body parts in the mind). And scrub the Sore Spot also.

emofree.com/articles-ideas/...

See also:

eftuniverse.com/tutorial/ef...

And do the whole thing with fun.

So, Happy Recovery and since recovery from this nice condition often comes all of a sudden, send us an alert when it happens to you..

Radical mantra: "Even though I am still taking those meds, I choose to wean off of them and I deeply and completely accept myself."

bookish profile image
bookish in reply to Resano

Thanks for that! I should have said ( and I usually do, so sorry) that I don't have PD. I have other neuro and autoimmune issues, but a previous family history of PD (amongst others) so follow for interest. So many of the useful supporting techniques work across multiple conditions. I took the meds for 15 years and did choose to wean off 6 years ago. I have learned a lot since that has made a difference to me personally, but still a work in progress albeit a much calmer, happier one now that a bit more is manageable by my own actions. Best wishes

delboy381 profile image
delboy381 in reply to bookish

Do you say you stopped using drugs 6 years ago? How do you deal with the symptoms?

bookish profile image
bookish in reply to delboy381

Yes I did, but I also said I don't have PD. I needed diet changes (especially for undiagnosed but long standing food intolerances so gluten and dairy are gone), lifestyle, vitamin and mineral improvements, but it took a long time to get to that point and won't be right for everyone. Magnesium has been a revelation. Cheers

delboy381 profile image
delboy381 in reply to bookish

Thanks for your reply.

WinnieThePoo profile image
WinnieThePoo

Tends to add support to the idea that the gut microbiome is playing an important role

bookish profile image
bookish in reply to WinnieThePoo

A huge role, I agree absolutely

KBGfightsback profile image
KBGfightsback

Could this support the theory that there's a viscous cycle involving the digestive system - Vagus Nerve - Stress, where stress and digestive issues both contribute to leaky gut and allow toxins to permeate the gut-brain barrier. Meditation, deep breathing, humming, and gargling all are supposed to "relax" the Vagus nerve, therefore interrupting this cycle perhaps? Folks dedicating significant time to Qi Gong moving meditation practices, chanting, and a high fiber diet have reported positive results. (Bianca Molle, Howard Shifke)

JAS9 profile image
JAS9 in reply to KBGfightsback

I'm going to give a "YES" vote for a high fiber diet. 6 years ago, I had constipation and several moderate-to-severe PD symptoms. The list is too long to get into.

Then, I decided to go WFPB (whole food = very little if any processing, plant-based = almost no -if any - animal-based foods) In other words, lots and lots of fiber. Shortly after going WFPB, I was able to start walking for exercise again. This was a huge thing for me! A year or so later, my constipation was just gone and many of my other PD symptoms were reduced. I'm sticking to it. Now, did my constipation go away because I changed my diet or because I began walking? Would I have been able to walk if I'd not changed my diet? Cause and effect can be tricky, but I believe that everything affects other things so both are true.

MissRita profile image
MissRita in reply to JAS9

Hello, I have severe constipation and it’s getting to the point where even laxatives are not working. With your diet plan is there a book or a guide that I could look at? I do worry about eating a lot of fiber because for me fiber seems to expand in my intestines as opposed to clean out the system. Meaning when I’ve tried something with psyllium husk or something of that same caliber my gut and my whole midsection expands and doesn’t go anywhere else. I don’t have any blockage I don’t have any blood I don’t have any kind of other issues but this constipation is just really difficult because I have a hard time walking at times and it does affect the tremor. I always know when my gut and stomach is off because that’s when the tremors start. Everything else is fine, I mean I don’t have any slips trips and falls, cognitively I am fine everything else is great and the doctors are sort of perplexed because beyond the tremor I have no other signs of PD. Nevertheless, they have given me a diagnosis of mild PD because of the tremor. Interestingly enough, this morning I woke up with no meds at 6 AM and as I started to tremor a little bit and my feet started to go a little bit I drank water and I was fine and the tremors started to subside and then within 15 to 20 minutes as my body took the water in and obviously digested it that’s when the tremors start. It’s the oddest thing I tell you. And as much as I have looked I cannot find anywhere in any research article as to the symptoms being connected to PD. Anyway so sorry for the long post but I’m going to definitely check out your diet. Thanks!

Resano profile image
Resano in reply to KBGfightsback

Exhale... "Simply relaxing our shoulders allows our breath to come deeper into the lower lung fields and activates the vagus nerve, which is involved in the relaxation response, a known component for self-healing" (Dr Kim d'Eramo) "When we’re in fight-or-flight, we breathe into the upper lung fields, taking shallow, quick breaths and using our neck and back muscles to breathe. This increases anxiety, pain, tension, and headaches and inhibits mental clarity." (ibid.)

reedboat2 profile image
reedboat2

Voice/singing coach Andrew Byrne gets deep into VNS, using his hands and inexpensive tens device:

youtu.be/d6xwxfGTOhc

bookish profile image
bookish in reply to reedboat2

Fabulous, thank you so much

sharoncrayn profile image
sharoncrayn

supposedly, about USD $1,200 - $1,750 for the "sapphire" unit. prescription only (PD would be off-label at this time?). not covered at this time by medicare/medicaid.

"The gammaCore Sapphire CV produces a low-voltage electrical signal consisting of five 5000-Hz pulses that are repeated at a rate of 25 Hz. The waveform of the electric pulses approximates a sine wave with peak voltage limited to +/-30 Volts (24 Volts when against the skin of the neck) and a maximum output current of 60mA. The signal is transmitted through the skin of the neck to the vagus nerve."

"One of the major outcome measures—video-based assessment of freezing of gait—provided mixed results. Although, the average duration of freezing episodes whilst walking around the laboratory gait assessment circuit reduced significantly only in the nVNS group, the perception of patients regarding disability caused by freezing of gait and fear of falling (as quantified through questionnaires) was reduced significantly from baseline in both groups. The difference identified in freezing duration is therefore of uncertain clinical significance. "

P values by objective varied considerably for the intervention group (pre-post). should be consistently within a range of "statistically significant" P values (P=<0.05, = to or less than) for the majority of objectives for the intervention group.

only 9 objectives were SS; 13 were not.

sharon

JAS9 profile image
JAS9

You can also use a standard TENS unit to do something similar, or so I've read. There's plenty of info on Youtube and similar. Has anyone tried that much less expensive alternative?

Godiv profile image
Godiv in reply to JAS9

I was wondering about that also. There doesn’t seem to be any other options; when you look up the stimulator devices, TENS units always come up.

JAS9 profile image
JAS9 in reply to Godiv

I have a TENS and I'm going to try it soon. Just haven't had time, but I'm making it a higher priority. I'll post any result within a few days.

Godiv profile image
Godiv in reply to JAS9

OK thank you! I saw the YouTube instructions etc. for using it for that purpose so that’s great. Can’t wait to hear.

SilentEchoes profile image
SilentEchoes in reply to Godiv

FisherWallace for $499.00 might be reimbursable under your health insurance plan.

There are different locations where you can stimulate the vagus nerve (earlobes, temple neck etc.) You have to be careful when stimulating the vagus nerve in your neck, if you are on the wrong side it affects your heart. This is the one I have:

fisherwallace.com/collectio...

Godiv profile image
Godiv in reply to SilentEchoes

OK thank you so much. I’ll look into it. Probably the insurance won’t pay. But it’s worth looking into. Or sometimes they offer discounts on devices. Thanks again and I’m glad you like it.

MissRita profile image
MissRita

I’m in the US and I just bought a Coronet Duo with no script needed. Do you like yours? How long did it take for you to notice any differences? And if so where the differences felt over time or did it seem quicker than you thought?

jimcaster profile image
jimcaster in reply to MissRita

It took approximately 3 months to notice improvement. The improvements were across the board (handwriting, dexterity, memory, slight sense of smell, to name a few). Here's a link to a post I made:

healthunlocked.com/cure-par...

MissRita profile image
MissRita in reply to jimcaster

Great thanks so much.

House2 profile image
House2

You can "Hack" the vagus nerve at the ear using a TENS unit and ear clip electrodes for under $100

AmyLindy profile image
AmyLindy in reply to House2

I’ve got a portable TENS… can u suggest source or picture of ear clip electrodes pls ? Interim, I’ll consult Amazon…

House2 profile image
House2 in reply to AmyLindy

tensnet.com/products/ear-cl...

AmyLindy profile image
AmyLindy in reply to House2

What about the wire? My wires affix to 1” square replaceable adhesive pads for body placement. I might just try folding them over my ear lobes for starters. Thoughts?

House2 profile image
House2 in reply to AmyLindy

they should work in place of your standard electrodes (keep your existing wire)

House2 profile image
House2 in reply to House2

ncbi.nlm.nih.gov/pmc/articl...

Electrode placement for tVNS. For informational purposes only!
AmyLindy profile image
AmyLindy in reply to House2

The transdermal patches that I have aren’t small enough for these areas. I’m looking into the ear clips- what product works to wire them to the TENS Unit, I wonder? This will be my DIY model.

PDWarrior1900 profile image
PDWarrior1900

please tell me something about your coronet... if you place your hand over the red lights... do you see that red light shine through and display on the back of your hand? thanks

jimcaster profile image
jimcaster in reply to PDWarrior1900

Yes.

PDWarrior1900 profile image
PDWarrior1900 in reply to jimcaster

excellent, thanks!

Coling profile image
Coling

Hi jimcaster, it sounds promising but on the flip side, that trial pointed out cognitive impairment in those patients that had positive movement results....I think some tweaking needs to be done

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