TENS machine as an alternative to GammaCore

[Jamesmsv]

***EDIT*** please read the replies below my first post to understand possible risks***

I have been suffering from CH for 12 years this year but this is my first post on the forum as I didn't have anything new to contribute - but I seem to have found a preventative that is working, at least for me. In 2016 I came across all the talk about psilocybin and it gave me nearly 3 years of virtually no attacks. Unfortunately this year it didn't work, simply shifting my Sept-Nov period to this January and February. Re-dosing at recommended periods had no effect, it is like my brain is just ignoring it this time round (none of that 'resetting' feeling either).

This prompted me to begin a new search online for updated treatments, which led me to the GammaCore product. I was skeptical at first, especially of the £650 price tag it's estimated to cost the NHS for a 3-month trial. But looking at the technical specs it seems to be nothing more than a TENS machine adapted for more convenient use. So rather than go through the hassle via the NHS, I took a punt on a £30 TENS machine.

The GammaCore literature explains that it can take a couple of days for the treatment to work (3 sessions a day, plus at the onset of the attack), so I wasn't expecting immediate results. Here is what has happened to me so far:

- Current situation is being about 2 weeks into what is usually a 2-month bout, starting to crescendo with sometimes multiple KIP 10's a night, plus one or two daytime attacks. In the past month I've had four doses of psilocybin with no success.

- Day 1 - placed the TENS machine pads on my neck for two sessions. Shadows reduced to virtually nothing during the treatment. That night I woke at my usual time with a KIP 5. I attempted the TENS but it immediately ramped me up to a KIP 10, so I gave up on that as an abortive treatment.

- Day 2 - did the three suggested treatment sessions (each session is 3 x 2min bursts). No attack that night, had my first full night's sleep in 2 weeks.

- Day 3 - treatment continued as usual. On the two occasions I felt a daytime attack was on the horizon (shadows slowly getting worse, you know when you feel one is coming on...) I did another treatment and the attack never came.  No night attacks, another full night's sleep.

- Day 4 - as per day 3

- I am now on Day 5 and am seeing continued improvement in my daytime shadows. 

Obviously this is early days but I have never had a CH bout which had a 5-day remission mid-bout. It would be highly unusual. Now, I do acknowledge that what I am experiencing could be the delayed action of the psilocybin, but I do not think so. The reason I am confident the psilocybin didn't work this time is that the very distinctive feeling of my brain 'resetting' was not present. The fact the TENS immediately reduces my shadows during a session also points to there definitely being something good going on. 

I know through bitter experience that a lot of things people suggest on these forums will only help some and not others, but if my posting this can help at least one other person find some relief... 

Finally a disclaimer - I am not a doctor or qualified medical professional. I believe, from reading the GammaCore and Tens machine literature, that it is safe to administer TENS treatment to the neck area, but this is a personal opinion only. 

If anyone else tries this and it works, please let us know. 

[spiny]

Thanks James, for posting this! Yes, just for others to read and consider, it has value. It is wonderful that you are getting relief!

Where did you place the pads on your neck? How far up the scale did you go with stimulation? 

GammaCore has not been the winner we hoped for and it is invasive. 

 

[Jamesmsv]

Thanks for the reply. Regarding the stimulation, the TENS machine I bought has 15 different settings (!) that are supposed to mimic different types of massages, but I am keeping it simple for this round of treatment and sticking with a simple pulse that is roughly on for two seconds, off for one second. I keep it on the lowest intensity as, even with that, I can feel my neck muscles contracting. 

As for positioning, I am still experimenting but following some simple rules, based on what I experience during an attack. A TENS machine requires both pads to be attached to the skin for the signal to flow, so I am currently trying:

1) First pad - on the side of the neck in the same area GammaCore is meant to be sited (near the pulse/windpipe area). I find quite high up just below the jawbone works best for me. 

2) Second pad - this is where I am still experimenting most. During an attack I often need to press very hard on the back of my neck, just to the left of the spine and level with the top of my jawbone/bottom of the hairline. So that is 2nd Pad Site 1. I have also tried lower down where the neck meets the shoulder, as I find pinching that area very hard can sometimes reduce the pain a bit during an attack. That is 2nd Pad Site 2. 

My only warning to people would be that both GammaCore and TENS machines advise strongly against any contact with the upper cranium, which I am taking to mean the temples and the left-side of the head above the ear which is so often one of the most painful areas. It may be tempting to try the pads there but I won't personally be attempting that.

Because the daytime session is 3 x 2-minute bursts, I find myself re-positioning the pads for each burst to Site 1 or Site 2, or somewhere in between. This will make it harder to work out if one site is better than another long-term, but right now it feels like the right thing to do. 

[Jamesmsv]

I think now would be a good time to direct people to a page from a trusted source like the NHS on the safe use of TENS machines : https://www.nhs.uk/conditions/transcutaneous-electrical-nerve-stimulation-tens/

There seems to be some contradiction here with GammaCore. It is advised not to use TENS on the side of the neck, but that is precisely where GammaCore is meant to be used. One would hope that the safety of GammaCore has been thoroughly tested in this regard - but the variable signal of a TENS machine could be an entirely different matter. 

Everything I find is very vague and no more detailed than the NHS information unfortunately. I had assumed the danger of neck-use was more related to muscular closing of the airway than a risk to the brain, considering the back of the neck is listed as a safe place to use it. 

[Pebblesthecorgi]

Thank you for sharing your experience with a TENS unit.   GammaCore has been a pretty big disappointment.  I personally had an opportunity to give it a good try and found it utterly useless.  Others report mixed results but it rare to hear a resounding positive comment.  Electrical stimulation has been very popular in many areas of pain and dysfunction and a variety of delivery systems are available (TENS type units, direct contact, using acupuncture needles with signal generator attached and implantable neurostimulators.)  The theory with GammaCore is to use the vagus nerve as a conduit to affect whatever events are leading to the vasodilation which may be causing the pain.  The placement of the GammaCore is intended to provide focused stimulation to the Vagus nerve.  By placing the patches near the jaw and behind your head many different nerves are involved and there may be unintended consequences so caution is advised.  Also with nerve stimulation there are several variables that can dramatically effect the outcome including frequency, pulse width, amplitude and intensity.  Depending on the settings you can get diffing results.  Patch size translates to surface area and you have to be careful if the patches are reduced in size as the energy delivery will be concentrated.  Be careful its not a risk free thing you are trying especially in a nerve rich head

[Jamesmsv]

My problem with that is that it seems to be a direct contradiction to using the GammaCore on the side of the neck. As it is deemed safe to use TENS on the back of the neck (ie nearer the spine) I would be surprised if a side-of-neck placement is more dangerous when it comes to the CNS, at least at low levels. 

In response to your question on my particular unit, I have not tried the other two pads yet so do not know how that would affect my results. When it comes to the specifics of the pulse I'll have to refer to the manual when I get home - the unit I purchased had the presets that I mention but the display doesn't tell me the frequency or any other technical info. Hopefully the instruction manual will enlighten me.

In hindsight I would have specifically searched for a unit that allows complete control of the electrical signal, so as to copy the GammaCore's advertised pulse characteristics. 

 

[Jamesmsv]

As an update to my earlier post about the specifics of my own TENS machine, unfortunately the manual does not provide any details on the electrical signal used for each level or setting. This is prompting me to consider another purchase of one that will enable fine-tuning or at least gives me the necessary information for each setting.

I have re-read the gammacore literature ( https://gammacore.com/wp-content/themes/gammacore-p2/pdf/gammacore_IFU.pdf ) and it is definitely contradicting the general NHS advice on neck placement. This would strongly imply that the NHS-approved device has been proven safe when used on the side of the neck. Whether this information translates to TENS, who knows. 

[Pebblesthecorgi]

TENS units are all over the place in quality, cost and indication.  The over the counter versions sold as massage units have a range of energy delivery options but are mostly designed to stimulate muscle twitches and make you feel like they are doing something.  Very imprecise and hard to replicate.   Devices like GammaCore use a fixed frequency and allow you to increase the amplitude.  They send a retrograde signal up the Vagus nerve.  In theory its possible to make a TENS do a similar thing but you would be awfully lucky to get it to work in a manner similar to a dedicated device.  I'm not sure the frequencies available in a TENS unit match what GammaCore produces.  I would be very cautious on the neck because vagus stimulation can lead to heart arrhythmia and a loss of consciousness (fainting).    

[Jamesmsv]

Thank you both for the information, that's the kind of thing I was struggling to find online in terms of understanding why one can be safe and the other not. I have edited my opening post to direct readers to the replies highlighting the risks.

I read in one of Peter Goadsby's papers that CH are very resistant to placebo effect, so I don't think my recovery so far has been down to that. It may be that, for whatever reason, the psilocybin took longer to reset me this time and that is the true reason for my bout reducing to mere shadows. That is one of the biggest problems with finding these 'home remedies', they're very prone to unforeseen interference. Or it may be that TENS can provide the same results as GammaCore but with much higher risk.

Pebblesthecorgi, I am sorry GammaCore did not work out for you. I understand Kings College London finished a preliminary psilocybin trial in 2019 that suggested the drug was well-tolerated by patients, implying that further trials would be easier to authorize. Out of all the treatments over the years I still believe that psilocybin in some form will provide the universal and relatively risk-free relief we all seek.

[Jamesmsv]

It's now been another 10 days since my first post and I thought I'd update on my experience thus far as it's always nicer when a thread like this can have a firm line drawn under it.

In those 10 days if anything I've seen a slight worsening of the bout again - so anything the TENS was doing, it was not a long-term solution. It does still provide relief from shadows during the sessions but the nighttime attacks have returned slowly. I also busted again last Friday night and seen little improvement, but it's worth noting because I was not performing this as a TENS-only exercise. 

My final conclusion is that, like many things I've tried, the TENS provided some intermittent relief but is not something to get excited about. Due to the safety concerns raised by other members I can't recommend it. 

[GodILoveInsuranceAgents]

Great minds in abject pain think alike! I own a TENS machine for unrelated nerve damage, so I gave it a shot two cycles ago because my doctor wouldn’t prescribe Gammacore, Emgality, or anything else newfangled. Unfortunately it didn’t seem to reduce the frequency or intensity of headaches for me. 

 

I have a new doctor who is willing to prescribe me either Gammacore or Emgality. Has anyone tried both at the same time?