Nontraditional Treatments

[Mike]

I have had NCS for many years now, I have seen many doctors and tried tons of medications, nothing has worked for me yet.

I was wondering if anyone has tried things like Tai Chi, yoga, or acupuncture, and if you noticed any results. I know everyone body is different and what works for one might not work for another, but I feel like I'm out of options.

[Katybug]

I have tried a treatment called dry needling (it is similar to acupuncture but treats muscular trigger points instead of the traditional organ based points of eastern acupuncture) to treat my painful joints. I had used dry needling in the past after a back injury but prior to POTS and it was so helpful. This time around, while it was helpful in relieving some of my pain, I had to stop because with each treatment, my vagal response was getting worse and worse to the point where I almost passed out on the table at my last treatment. I bring this up just because I wasn't expecting the vagal response to the needled as it never happened before. It's definitely a new consideration with POTS.

[Bigskyfam]

Pt has been the only new outside the box thing I've tried and iv fluids as needed. Pt has helped

[Chaos]

I've been seeing an acupuncture doc who specializes in treating neuro patients. She does scalp acupuncture in addition to traditional treatments. In the past when I tried regular acupuncture I had horrible reactions to it, but this doctor seems to be helping some.

I've also done specialized PT/body work similar to what's described in this video.

Dr. Rowe who is presenting in the video is well known for his research into POTS as well as ME/CFS and hypermobility/EDS issues. This was an interesting study he did in conjunction with a PT at Johns-Hopkins recently.

In my case, I did this kind of PT when I was early in my illness and while it was very helpful, the effects only lasted about 4 days and then I'd go back to feeling terrible again. I'm considering going back and trying this again based on the results of this study and another one yet to be published.

I was a yoga instructor for years before I became ill but haven't been able to resume a regular practice as any type of exercise triggers post-exertional neuroimmune exhaustion in me. I miss it tremendously as it was a great practice. With NCS, I would be very careful about the type of yoga you try and how often you are having to change positions from floor to standing. Be sure to check out instructors and I would suggest trying to find someone with a medical background or a lot of experience as a teacher who has dealt with people with health issues. While yoga is a great practice, it can frankly be dangerous if done incorrectly and without correct supervision. It terrifies me to see what passes for "instruction" at some gyms. At the very least, look for someone with a 500 hour RYT certification or 20+ years of teaching experience.

Tai Chi comes in various forms from the little I know about it. There is a gentle form which I have minimal experience with. If you tolerate standing ok, you might be ok with this form as you are rocking on your legs which will help keep the muscle pump active and keep blood moving up to your head. I tried this when I was teaching yoga and found it too passive for what I wanted at the time. Ironically it would probably be too much for me to handle now. It was a peaceful practice however.

Good luck. I'd say it "never hurts to try" except I've had bad reactions to lots of things I've tried. However, I'm still trying new things and won't quit until I either get better or die. I'm just getting smarter and being much more selective in who I see and doing much more research about things before I jump into trying things than I used to do.

Best wishes as you try new things.

[corina]

Thanks for sharing the video Chaos!

[Mike]

Thanks for the input guys/girls!