The Future of Treatment

[Echo]

Hi everyone, with my recent flare up of dysautonomia I've been looking a lot into neurology. As far as I am aware through a lot of testing with many specialists I do not have an identifiable cause such as autoimmune disease so these may not apply to everyone but I think every little bit helps. Here are some things I'm quite fascinated with:

1. Neurofeedback. Exsurgo chronic pain tool

This is a very new device called Axon designed for chronic pain but I think it's pretty clear that there's a lot of overlap in brain areas and activity between chronic pain and dysautonomia, especially sympathetic activation. I'll be watching with interest especially since it's being developed in my country of residence.

2. Neuromodulation   BRAI3N

This is a  neuromodulation clinic in Belgium run by University professors and medical doctors (not holistic health practitioners. Not putting them down or anything just wanted to make the distinction.) POTS/dysautonomia is not on the list of disorders but chronic fatigue and fibromyalgia is. I have been in brief contact with one of the professors (who is also a neurosurgeon and neuroscientist) over email and he mentioned nerve stimulation for dysautonomia. I am looking to have an online consultation with him as I am not in Europe just to see what he thinks about dysautonomia from a neuroscientific point of view. If anyone is interested I can update here if I do end up having a consultation.

Interestingly their explanation of CFS mentions the HPA axis which is what the Cortene drug trial recently has announced success with in treating CFS.

3. Pons device 

This was originally written about by Norman Doidge in his neuroplasticity books, I don't remember if it was the first or second one, and seemed to provide a variety of benefits to test subjects such as improved mood, sleep etc. At the moment most of the information you will find about it is on balance and MS because that's what the FDA have it approval for.

4. Infraslow Neurofeedback https://neurofeedbackservicesny.com/the-benefits-of-infraslow-neurofeedback-training/

There's a bit of a preamble at the start of the article but it explains the concept in an easy to understand way. (This website is for the clinic which has 'pioneered' this type of neurofeedback.) This is a relatively new type of neurofeedback which targets the ANS in particular and is currently used for high stress/anxiety problems. I think anything that shows it can directly affect the ANS is a very interesting and fertile area to explore!

I really do think that this is where a lot of the future of treatment lies, especially for those of us who don't seem to have a clear underlying cause such as autoimmune issues. Hope this was interesting!

 

[MTRJ75]

I've been very interested in this and do believe somewhat in the power of neuroplasticity (although autoimmune issues can complicate things, as you lastly mention), but neurofeedback was insanely expensive when I inquired about it. I've gone through and still have access to one of the brain retraining programs with limited success. I've been able to occasionally better deal with my symptoms (though that's easier said when they're not happening), but can't really think of anything it's actually physically improved. Actually, the meditative parts of increase my aches and exhaustion for some reason. 

CFS/Fibro is complications via similar mechanisms as I understand it so there's a decent chance what helps one might help the other. I read, and may have even posted, the recent Health Rising blog on the Cortene trials, which are interesting, but too far off to get too excited about. 

I've never heard of a PONS device though. 

I've tried many exploratory things, some of them quite expensive (exosome therapy, something called PEMF therapy - which was only expensive because you had to keep doing it) with either very little or very temporary results. I've also read about the benefits of vagal stimulation. 

Please keep us updated if you try any of these things. 

[yogini]

So my personal experience is that these types of treatments help at the margins.  But what revolutionized my life was getting on an SSRI.  That was the medication that helped me to exercise and improvement built on itself. I then got back into life. Though I still have dysautonomia it doesn’t rule my life any more.  Like you I have no “cause” either, thoigh I do believe my condition is post-viral, following a mild virus almost 20 years ago.