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gofl1

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Everything posted by gofl1

  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.
  15. I assume when you say palpitations you are referring to pvc's or pac's? Basically they really don't know why they occur. My cardiologist thinks it is just catecholamine release along with a touchy vagus nerve. If you look at statistics though, almost everyone including perfectly healthy people have palpitations on a daily basis. Most just don't feel them. Every study has concluded they are not indicative of any serious abnormalities in a structurally normal heart and the prognosis is the same as a normal person. I have bad days and good days but try not to let them bother me anymore. Some peop
  16. I was diagnosed with gastroparesis and biliary dyskinesia which is basically gastroparesis of the gall bladder. While it was really bad when I first was diagnosed, it has been getting better and better along with my overall health. Even when my stomach was at its worst I have thankfully had pretty much zero lower gi issues (constipation etc). My big symptoms were/are bloating, belching (number one issues), and reflux. If you eventually need to go on meds domperidone is really the safest, but not all doctors will prescribe it because it needs to be ordered from outside of the US. There are a fe
  17. Carrie if you don't mind sharing, what in particular did you notice and at what dose? It does have some potential to downregulate gaba receptors which could potentially lead to rebound anxiety. I haven't seen a lot regarding that though.
  18. I went with the regular whole foods brand. Bought it in the store, but really any brand should be similar. Vegetarians are apparently very likely to be taurine deficient because the body can't produce it without meat, fish, eggs etc.
  19. Hey everyone, after a bit of research I decided to give taurine a try. I have been taking 500mg a day for about a week now. Apparently this is on the lower end of dosing, but I am genuinely impressed by its effects. I wanted to try it because my pvcs had suddenly become very frequent. While my dosage is way smaller than this pubmed study, I wanted to give it a shot http://www.ncbi.nlm.nih.gov/pubmed/16797868. Since I started my pvcs have decreased by at least 80% and both my standing and resting heart rate are lower. My heart rate during exercise is also a lot better/more comfortable. I have b
  20. Have you seriously looked into a chiari malformation? This sounds similar to me and might be worth considering. Apparently a cervical mri won't necessarily detect it if you have already had one done. I hope you get some relief soon.
  21. Thanks Sue, I don't have the results with me (forgot to ask in my post test stupor) but I don't believe insulin was measured except for at the pre glucose blood draw. It seems a lot of doctors are fairly unaware of how to deal with hypoglycemia. What's weird is that eating meals only containing protein and fat really seem to drop my blood sugar which I don't understand at all. My glucagon response must be somewhat intact if I rebounded from the 39 without eating anything. With all my weird health stuff up until this point nothing would surprise me, including something rare like an insulinoma (
  22. Hey everyone, I am usually pretty good at figuring out how to treat my symptoms or at least understand what is going on, but I am seriously struggling with my blood sugar. I was tentatively diagnosed with Pots about a year ago after two years of symptoms. Thankfully I am doing much much better now in that regard. The only med I am taking right now is Bystolic. I am minimally over weight, but not obese. It seems that my low blood sugar issues have become much more pronounced in the past 3 months (and getting worse), but I can now see signs of it going back a few years (blurry vision, crushing
  23. That's a very interesting idea Cala. My thinking was trying to recreate something along those lines, but in a way that you could use it any situation where having that earbud in wouldn't really be acceptable (meeting, class, movie theatre, out to dinner etc.). Maybe that is too narrow of a need for a most, but I have found it coming up in my own life.
  24. If the ultrasound comes back normal and the pain continues, don't let them tell you your gallbladder is fine. I had a perfectly normal ultrasound but a HIDA scan, where they check how well your gallbladder is functioning based on how well it ejects bile, showed that it severely dysfunctional. There can be several problems beyond having stones.
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