***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.
