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Everything posted by RichGotsPots

  1. When your doctor emails dr. Levine they send back a message that states that the person who handles emails only checks it once or twice a month so they ask for you to be patient
  2. I agree placebo is medicine, but lets say this exercise protocol as a drug study it would not be FDA approved for POTS on those grounds. And there are easier placebo things to try. There is an awesome documentary on how placebo can work even better than medicine. They did real knee surgery vs. a fake knee surgery and to enhance the fake one they numbed the patients knees and showed them the surgery on a tv next to their head so they all really thought they had knee surgery. Not a drug but surgery. The people who had the fake surgery actually had better results than the people who had the real surgery. If that doesn't convince any one about the power of placebo idk what will. The slippery slop is that if the results are spun as a fact that it works for a remarkable 71% of patients this false stigma is created that all doctors and family and friends will tell us we aren't pushing ourselves hard enough or that all we have to fo is exercise to cure ourselves. That's an aweful spot for a placebo to put us in. My concern is that the study is published without even finding that niche group that it might help more than others. The exact groups that dropped out of the study should be documented. Did they have mito, mast cell activation, eds, autoimmune illness, ect...
  3. Every medical treatment or medicine needs to have a mechanism clearly explained. This one does not. They need to explain why athletes and extremely athletic individuals are getting POTS in the first place. Both times when my 3 triggering flares started I had been working out like crazy and been the best shape of my life. So how does it work that I need to get back in better shape and that will improve me? I think that yeah anyone who is sick long enough is lacking in conditioning so what. They cant prove it's not placebo and I find small heart syndrome a joke..
  4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914315/ "Conclusions Autonomic function was intact in POTS patients. The marked tachycardia during orthostasis was attributable to a small heart coupled with reduced blood volume. Exercise training improved or even cured this syndrome in the majority of patients. It seems reasonable to offer POTS a new name based on its underlying pathophysiology – “The Grinch Syndrome”, because in this famous children’s book by Dr. Seuss, the main character had a heart that was “two sizes too small.” This is from Dr. Levine's original study. #1. "Autonomic function was intact in POTS patients" the most rediculous thing I have ever heard. To me this protocol is working on a select group that has a form of POTS that isn't do to dysautonomia. #2 he claims POTS tachycardia is do to a "small heart coupled with reduced blood volume." In the 1st study they did cardiac MRI testing so it looks like they are basing it off that, but in the newer larger study they don't mention the testing in the Method and they don't mention anything about small hearts. So which is it? #3 "improved or even cured" cure is a very big claim. You need to follow patients for years often 5-10-15-20 years to see if they are cured. They didn't publish any long term follow ups. And in the new study they don't follow up longer than 12 months. Also they never say whether the patient would have to follow this protocol for the rest of their lives and never need medications again. I think all they did was identify a group of people, possibly Firewatcher fits into that group, that will be successful with exercise. The major problem is that it is a minority not a majority. And like Katybug said, mainstream doctors and family and all the haters will tell all the POTS people they know to just exercise and get over it. So many people have told me they have a high heart rate as if mine is nothing. I feel this study hurts our community more then it helps it.
  5. I think this study proves that exercise works for a very small % of POTSies. Don't let the 71% fool you. Basically 59% could not even finish the study. That is a huge amount. No pharma drug would ever be approved with a 59% drop out rate. And then only 71% from the remaining 41% had no signs of POTS. But everyone in the study was excluded if they had any other illness like mito or mcas or whatever. What potsies don't have other illnesses? I have never talk to any that don't. Obviously exercise helps around 30% that's about what I observe from talking to people. But they didn't do a comparison of another exercise protocol vs. their "top secret one", let alone a placebo. Also Levine believe POTS is only do to small hearts and deconditioning. Even if he thinks that had the other 59% drop out group finished that 71% would have not had POTS any more, then why do 29% still have it? Also did they do a one year follow up of people who stop the protocol or exercise? Do they get POTS again after they stop? Can they stop taking medication now? Doubt it!
  6. http://www.ncbi.nlm.nih.gov/pubmed/26690066 "We found that in a research setting, exercise training along with lifestyle intervention is effective as a non-drug therapy for POTS." 103 patients completed the program. Of those that completed, 71% no longer qualified for POTS and were thus in remission. The increase in heart rate from supine to 10-min stand was markedly lower (23±14 versus 46±17 beats/min before intervention; P<0.001), while patient quality of life was improved dramatically after intervention (P<0.001). Of those who were followed for 6-12 months (n=31), the effect was persistent. CONCLUSIONS: A training/lifestyle intervention program can be implemented in a community setting with physician supervision and is effective in the treatment of POTS. It remains to be determined whether exercise can be an effective long-term treatment strategy for this condition, though patients are encouraged to maintain an active lifestyle indefinitely.
  7. Wish more people would respond because I don't think a lot of research has been done with co-dysautonomias
  8. But in this instance the makers are not claim its a quick fix or a cure or even trying to sell it to our community. I haven't so obviously I'm not endorsing it either..
  9. Hey Sarah, I never got up to that higher dose that I needed to lower it. I still have a bottle, but the doc who gavenit to me got scared off my my last infection reaction and said pots is too much to handle. So I need to get back to my regular pots cardiologist (he is just far and ***** and following me when on new meds) i want to try it again, so hopefully soon. i was getting better every day after I finished the antibiotics, but I was just in the ER because I got another infection (4 weeks later). They gave me a low dose z pack, lower then last time so I hope it helps. On top of getting checked out for Mito disease in a month, I made an appt to get checked for Adult on-set cystic fibrosis. I fit a lot of the criteria and the testing is easy and straight forward so just wanna cross it of the list. Make sure to get an appt with the cleveland clinic wellness center. Its the holistic branch of the cleveland clinic and they know about pots there.. Good luck! Update me!
  10. I would say SVT is different because its cause isn't autonomic dysfunction. But many potsies have it
  11. I'm just curious how many of us have both POTS and IST. For example I have POTS 24/7, 365 days a year. But I get times when I am flaring, or have infections or just certain hours of the days or other times when my resting pulse is very high. Sometimes as high as 120-130 laying. Sometimes its hours and sometimes its days to weeks that high just resting. So I was just curious who else has this.. I still have the 30+ increase standing so during these times it's like I have both..
  12. Sylvie, I don't umderstand all of your comment here. Vanderbilt has a vagal nerve stimulation study for POTS underway. And it is not the implanted kind you are thinking of VNS. The new devices are usually attached to the ear actually..
  13. Im a guy so I can't help you with a birth control question, but there is definately a connection that I've posted about a while ago about hormones as they relate to autonomic signals and affects
  14. It is a relatively new device using technology and reseearch that has been around for years supposedly. They say on their website, "The Thync Approach A soothing neck massage. A splash of cold water. A kiss from someone you love. Each action influences peripheral nerves in your head and face, signaling brain regions to change the way you feel. Thync works using the same pathways by delivering low-level electrical pulses to these nerves. Every day, your body balances the activity between your sympathetic and parasympathetic nervous systems. The sympathetic system is associated with a "fight or flight" response to help regulate your reaction to stress. The parasympathetic system counteracts stress to help you enter a relaxed "rest and digest" mode. Thync uses neurosignaling to activate specific cranial and peripheral nerves to influence this balance and shift you to a state of calm or give you a boost of energy in minutes." Right now I believe vanderbilt university is testing Vagal Nerve Stimulation on POTS. I wonder how Thync compares. Thync also is not a medical device which is interesting. But it is very expensive. $299 plus $20 for 5 one time use bands. Its interesting to say the least but i just dont want to be the first guinea pig. If anyone has any thoughts or tries it please let me know how it went and what type of dysautonomia you have.. Also you can watch videos of people trying it on youtube..
  15. So far 75% but I am surprised in a way that its not 100%
  16. I have been coming to this forum over 4 years now and mostly stayed away from CFS forums, but resently I was looking for some insight into my fatigue escalation problems and skimed through a large CFS forum. There seemed to me a really large number of dysautonomia people there so I was just curious if there is as large of a number of CFS here. Recently the NIH recognized CFS and is advocating somewhat for more research in that area, which is neat and I think it coukd cross over toDysautonomia research eventually.
  17. Jade this isn't really the right post for the AchR antibody test. PM and I will tell you
  18. The antibiotics worked! ****, I went 3+ weeks completely untreated and the first week I was even in the hospital. Scary how clueless the medical community is about dysautonomia. I'm still not at baseline for fatigue but much better and on the mend. I believe there is a mito compotent to that crazy level of fatigue I got from an infection. The mito doc had to reschedule so that could be 6-8 more weeks..
  19. I just had azithromycin and it was affecting my heart rhythm, i just dealt wih it. It ****** but ai stayed in bed. Dont push too hard though. Just need to find one that helps. I also took manukah honey and olive leaf which are antibacterial
  20. How do you know that you need to increase blood flow to the brain at all? Have you done any blood flow brain testing that you think you are lacking blood to your brain?
  21. I had a very bad case of tonsillitis about 8 years ago. Same deal I went through 3 antibiotics until it knocked it out. I numbled my throught with a spray 5x/day and I drank yogi throat tea all day long. Took weeks..
  22. Agree with the post above. Our bodies do weird things. It's hard to chalk it up to dysautonomia, which it could be. But it could also be another type of thing from another type of condition. If it was assosiated with dysautonomia I would say 2 reasons for it could be blood pooling after you ate, but that usually happens with a heavy carbohydrate meal or it a type of sensory neuropathy. I usually get cold hands and feet, sometimes my ears and nose (the extremities) but more so when my adrenaline is higher. Adrenaline, specifically noradrenaline tells your brain there is danger so pool all your blood to your vital organs, but in that case when your hands are cold your chest should be warm..
  23. Last night I slept 14 hours and I woke up without the feverishness and pounding heart for the first time in 3 weeks. My back feels like its been sun burned from the inside which is my sensory neuropathy. I still feel weak but hopefully im moving in the righr direction now. Oh, and the doctor gave me 5 days of antibiotics. He has no idea what it is but for insurance purposes he called it an upper respiratory infection. He was so freaked out by my heart tests in his office that he wanted to give me a beta blocker. So I told him I would try coreg. He gave me 3.125mg pills, anyone know if that is a lot? I will do some searches on here because I have heard some good things since it is an alpha blocker too. Havent started it yet, want to wait until I finish the antibiotics..
  24. Hey Sarah, hope you are getting better soon. IV saline doesn't usually help me all too much, but in the hospital that first week I think I think a very slow drip over night helped a tiny bit. I asked them for IV Dextrose, which is used for mito disease but they didn't give me it. I see a mito doc in 6 weeks. That Invabradine didn't lower my HR at all on 7.5mg/day but really 10mg is when its suppose to start helping, some people take 15mg. So being off it really didn't notice a difference. I think it did staballize my BP a tiny bit more than usual though. I really want to try it again soon.
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