I am really happy that another key was found to help my Automatic Neuropathy/Dysautonomia (POTS=Postural Orthostatic Tachycardia Syndrome.)

I take MANY supplements with help from my Integrative MD. He has helped me for years with my Chronic Fatigue Syndrome. That is thankfully doing very well. Doctors before him were absolutely clueless. Doctors have never heard of POTS. HOW they can be so clueless is beyond me.

But, I do have this fantastic MD. Anyway, along with the Autonomic Neuropathy came PN on my feet. He said to take Alpha Lipoic Acid, then Benfotiamine. They worked so well. But, about two months ago he suggested I cut sugar out of my diet and eat only very good carbs. I was already gluten free, but many gfree foods you buy are junky, full of carbs.

SO, I did it and didn't notice much at first, but lately I have seen improvement again! It has all happened over two years. But, the ALA, then Benfotiamine made it faster and then no sugar kept it going! I keep my glucose as level as I can. I have no diabetes problems at all but that is what surprised me so much. I thought if all numbers are normal, even testing at home, you were fine. Still, the spike from eating is not good. So, I have really been working hard and hubby and I are eating wonderful foods. We always ate healthful foods, but now even more so. We are careful about glycation.

I love the book "Minding my Mitochondria" and I have had it for quite a while. Great advice.

I hardly feel anything wrong with my feet now.

Also, my POTS is improving. I was unable to sit or stand/walk. I have had POTS for three years. It is all connected. I can now walk for quite a while. Going to church without a wheelchair is great! I can even shop for clothes at CHICO'S! Hubby used to have to take me in my w.chair and show me clothes, I couldn't even turn my head...so dizzy, nauseated, lightheaded, heart palps, FAST heart rate, sensitive to sounds etc.

I just started being able to shop small stores without a little folding chair last week! In BIG stores I use a cute scooter, also when I walk my little dog. But I know before long I will walk further and further without feeling like I will faint. With POTS, you have TERRIBLE orthostatic intolerance.

I am really excited! My doctor ALWAYS told me I could get better! Other POTS and CFS patients' doctors do not help at all. I work with him. I research and ask good questions and we are a team.

Your story is very inspiring.....Hope you continue to get better.

Sally, l am so happy for you. It's amazing how our bodies have the capacity to heal when given the right tools.

I have never heard of POTS. It sounds like it has a lot to to with an increase in heart rate when standing. How did you finally come to this diagnosis? It's not always easy to find the root cause of PN. Your very fortunate to have a great MD, they are hard to find.

Sue

Shezian, yes, the main symptom to define POTS is an increase of 30 or more beats per minute when standing. The blood will not stay in the brain and heart.

I went to many doctors, the ER... NO one knew what was wrong. My integrative is not in the same city so I was too ill to travel.

I went to a cardiologist since there is a lot of chest pain with it. He had no idea but talked to another doctor there and he said it could be Dysautonomia but he didn't know much about it.

I then learned about Dysautonomia and POTS is Dysautonomia but more specific with the heart beating so fast.

I then called my integrative doctor and finally we drove to see him. I was SO ILL. Unable to walk, in my wheelchair, very upset. MUCH too ill for the tilt table test. She did other testing right there. I was right, it was POTS.

So we added more supplements and did more blood tests, got my hormones balanced and I slowly improved. My serotonin and Vit D were LOW. They are much better and that was helpful in many ways.

I'm so happy to hear this good news!

I'm just curious...what is an integrative doctor? I've never heard of that kind.

Integrative medicine treats the whole person. They can use all treatments, conventional and alternative. Complimentary, using all treatments available, not just writing prescriptions.

They are more open minded and more scientific. More emphasis on healing instead of treating symptoms.

You mentioned about your hormones being balanced, how did you know that it needs to be corrected? Did the integrative MD take a test on your hormones? Was there a specific hormones? What was the test called?

Thanks

I had Dr. Sergey Dzugan work with my doctor. It is a really great program but not cheap. Worth every penny though. You answer many questions and take A LOT of blood tests. Then he designs a program for you and they keep track of how you are on your own area of the site online. All bioidentical hormones, thyroid and cortisol that I needed also. Estrogen, Pregnenolone, Progesterone, and 7 Keto DHEA.

I had a hysterectomy and the gyn was a GOOF about hormones! I was REALLY ill. She just gave me a patch, ha. I knew she was very ignorant about hormones, but could not find even a hormone specialist that knew much. I got more and more sick with migraines.

For MANY years I suffered with migraines. The kind you cry and scream from. Throwing up constantly. I cannot take any meds for them. I tried so many, ER visits, doctors....It ruined a lot of my life.

SO, yes, I needed to get the hormones figured out! I was so happy my doctor suggested the Dzugan program. Your doctor does have to know enough to work with them though.

I was on the program for several years. Now, my doctor does it for me. We know what I need and all is stable and I never had a migraine again. Headaches from POTS, yes. Hormonal horrid migraines, all gone.

He has written two books. I have one and love it. I didn't need the one about migraines!

Sally, is Neuropathy a symptom of your POTS or the other way around?

You said you had auto NP, how did you get diagnosed with this type of PN?

What is worse POTs or auto NP?

Did you also ge burning feet and hands and sore feet?

I have bloated stomach, l just put it down to getting older. Hopefully it's not Auto NP.

Sue