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About gofl1

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  1. Gastroparesis can mean paralysis of the stomach itself or of the entire digestive tract. I have slow stomach emptying but normal lower gi transit time.
  2. Do you have any digestive symptoms? I am trying to get the test for SIBO (small bowel overgrowth) to see if that is contributing to my issues.
  3. That is a great article. Apparently for an unknown reason some people just don't absorb thiamine properly. Could be gut bacteria or a metabolic process within the body.
  4. Hey everyone, I have not been feeling great recently which has led me to once again start researching heavily. I stumbled upon a couple of interesting discussions regarding thiamine (vitamin b1). I am reposting one story I found on a CFS board below. I know there are a few old threads regarding thiamine on this forum but not a lot of discussion about it. It seems that thiamine deficiency can cause all sorts of symptoms in line with dysautonomia, including blood pooling in the legs. I even found a reference stating that thiamine deficiency has been implicated in erythromelalgia (burning feet sy
  5. Barb I am patiently waiting for Ivabradine to be available in the US. I know it has been hit or miss for the few people on here that have tried it, but it seems like a much better option for someone like me whose primary complaint is tachycardia. It slows the heart rate without all of the peripheral effects. According to this article it should be cleared by the FDA in the next year http://www.forbes.com/sites/larryhusten/2014/04/17/fda-grants-fast-track-status-to-amgen-heart-failure-drug/.
  6. It has only been about a week now, but since I started cutting my beta blocker in half my feet have gotten significantly better. They are less red at night when the problem was worse and the burning is going away. I don't know if only Bystolic which is a vasodilating beta blocker can have this effect or all of them, but there definitely seems to be a connection. I did read that calcium channel blockers can cause erythromelalgia type pain as a side effect. Unfortunately my heart rate which has been great for a while is starting to climb above 100 again so I am going to have figure out a solutio
  7. I have been on a beta blocker for about 3 years now, since the autonomic issues started. My heart rate back then used to be much, much faster than it is now, I think a combination of time, exercise and just taking care of myself better have helped. For the past year I have been on bystolic, a vasodilating beta blocker. The red/hot feet only started about 2 months ago. I am wondering if the beta blocker could be causing this issue as other parts of my system improve. Any thoughts? Has anyone noticed worse pooling after starting a beta blocker?
  8. I have started having this recently and am frankly terrified that it is the beginning of erythromelalgia. Everything I have read makes it sound like the worst thing in the world with little to no treatment options.
  9. Turmeric is ok, but what you really want is Curcumin, the extract from Turmeric. Look up the patented Curcumin called Meriva (there are several brands that sell it), it really helped my overall health.
  10. Make sure you have a full adrenal workup done including cortisol and aldosterone levels.
  11. Make sure you find an acupuncturist who really knows what they are doing. The first one I saw was awful and made no positive difference. The second that I went to could not have been more awesome and I felt better after the first visit.
  12. I would avoid the pyloroplasty especially if you believe your GP is pretty mild. I did not have one, but it has a tendency to cause dumping syndrome from which there is really no coming back. Have you tried Domperidone? It can be ordered from Canada with a US prescription (if you are in the US). You could also try Erythromycin. I have fairly mild GP as well and have had amazing success with acupuncture and the supplement Iberogast. They are running a few large scale acupuncture trials right now for GP, but initial studies were promising and I had some real improvement after a few sessions.
  13. Belching/burping was a real problem for me for a long time. I've done a ton of research and it seems the two most common causes are acid reflux and gall bladder dysfunction followed by gastroparesis. Lucky me it turns out I have both gall bladder dysfunction and gastroparesis which is where my burping came from. I have really cleaned up my diet and as my health improves so has the burping frequency.
  14. I highly recommend not taking any medical advice from Livestrong. Their articles are generally poorly written and meant as clickbait to generate ad revenue. There was basically no substance on that page. It just says ginger may decrease blood pressure and gives no mention of why or how.
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