They diagnosed me with Dysautonomia/Postural Orthastatic Tachycardia. Also could be name Syncope.
It includes labile blood pressure/labile heart rate(Tachycardia), IBS, and anxiety.
I also get really stiff and my joints crack and I get SOB, with major anxiety especially when I breathe and feel fainty.
Anyways, know about this condition. The doctors haven't been able to help. It has to do with the autonomic central nervous system.
Any help is much appreciated. I've been bed ridden for two years and it's driving me nuts. I want to go out surfing again lol well atleast be able to walk around the block. K thanks!
I'm very sorry to hear about your diagnosis. If you look up POTS forums, there are quite a few with people who have similar diagnoses and a lot of your questions may be answered there. From what I can remember, there are quite a few ailments that can mirror the symptoms of POTS though, so please make sure to get a second or third opinion. (Celiac disease, Addison's disease for example).
As for treatments, I have only learned about traditional American Medicine- which means treating the symptoms and not the root cause of why it's happening. You are in the right place for a lot of intelligent people who know a lot more about alternative therapies here. :) I should mention that I have heard of amazing things with B-12 therapy, and diet will have a major impact on how you feel too.
Anyhow, I could do some research for you if you would like some. Like they say, knowledge is power. Knowing what's going on and why it's happening will only better your circumstance. I hope you feel better soon, and get back to things you love- like surfing!
If you just had heart and blood pressure issues and are eating a fruitarian diet 100%, I might suspect something genetic like a heart murmur or heart valve defect.
However, because you have IBS and anxiety, these are classic reactions to grain and gluten products and or Celiac disease.
Are you still eating grains and or gluten products?
Also, it could take a few months or even a few years to heal from Celiac disease if in case this is a gluten issue.
Although less common, your symptoms are also side effects of eating a high oxalate diet which again would include grains, tubers and potatoes, beans and legumes, some nuts and seeds, all animal products, most cooked and processed foods, teas, coffees, chocolates, and some cruciferous veggies like kale and spinach.
Are you doing this diet 100%? If not, i challenge you to give a 90 day trial and see if you feel a difference.
Focus on eating fruit, lettuce greens, and a few nuts a day, but do not eat the high oxalate cruciferous veggies like kale and spinach.
Drink till you float with about 2-4 quarts of water a day.
Get tested for vitamin b12 and vitamin D levels. Make sure to at least try to sit in the sun and fresh air every day for about 20-30 minutes even in winter. While it may have less effect on your Vitamin D, sun is still great for eye health and mental health. Fresh air and oxygen are great for mood too.
I too was born with a genetic neuropathy and I know it is very easy to fall into the trap of feeling to tired to exercise. But once in the trap, it is only a downward spiral. Try to do some exercise everyday. Start with five minutes, and then work your way up. You can still do stretches and yoga in bed and or on your sofa. Trust me, I have done such madness and or do belly dancing type of moves while sitting down.
I can tell you that this diet and eating low fat and low oxalate is and was the best thing that ever happened to me.
Another thing that helped me even before going raw is to eat at least one mono meal of oranges a day. They have natural pain relievers and are anti inflammatory. They are great for skin, bones, and joints. Also, they are very high in calcium which is needed for all body tissues, systems, and functions.
Feel better soon. Peace, PK