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concernedhubby

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About concernedhubby

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  1. Hi there! I don't know if anyone has shared this already, but I wanted to point out the Open Medicine Foundation (OMF) research on ME/CFS. They are really fast-tracking the development of diagnostic tools, and are hoping to do the same with treatments. Multiple members of the board have children who suffer from ME/CFS, so they are both knowledgeable and motivated. https://www.omf.ngo/ https://www.youtube.com/channel/UC0kN-Gt9WJp7pWZJn2oDUbA The videos where Dr. Davis discusses their development of new diagnostic methods were particularly insightful. Micro patches that can be placed on the skin to detect ME/CFS, costing less than a penny to produce? Lab tools that can test many medications against the illness in a matter of minutes? Cool stuff, although I know it's still early in development. Hope you find this useful!
  2. Just sharing another study that points to estrogen as a factor in POTs... "The impact of 17β-oestradiol (E2) exposure on autonomic control of orthostasis in young women is unclear. We tested the hypothesis that autonomic cardiovascular regulation is more sensitive to E2 exposure in women with low orthostatic tolerance..." "In conclusion, blunted peripheral vasoconstriction and lower stroke volume contribute to compromised orthostatic tolerance in women; this inability to vasoconstrict is further exacerbated by exposure to E2. Furthermore, E2 administration increases baroreflex-mediated heart rate responses to orthostasis in low orthostatic tolerant women, which is likely to be a compensatory mechanism for the blunted peripheral vascular resistance and lower central volume." http://www.ncbi.nlm.nih.gov/pubmed/23401618
  3. @angelloz, thanks so very much for sharing your story! I'm sorry to hear that you've struggled through so much. My wife's list of symptoms is very similar to yours, so I can appreciate the internal strength it takes to fight through those symptoms every day. I'm proud of you for it! It's very reassuring to hear that your symptoms have been improving. Every voice that says "Hey, I'm feeling better" (even just a little) gives hope to the rest of us. My wife will really appreciate that you took the time to share.
  4. My wife also has pregnancy induced POTS. It slowly subsided a couple of years after the pregnancy, leaving my wife with a few years of feeling better. Then it slowly crept back during perimenopause and has been pretty bad the last couple of years. We're hoping the complete drop off in hormones after the change will make it disappear for good. Estrogen-based BC made my wife feel awful. I wish there was more data on this. I'd love to see a study of women with pregnancy-induced POTS that included a post-menopause follow up. It's hard to find reports of people feeling better because people tend to write forum posts only when they feel sick. (I don't blame them; they've earned the right to forget about their suffering and move on. I just wish they'd leave a post saying "Hey, I feel better now.")
  5. Found this fascinating... "Resting sympathetic outflow is greater during the luteal phase – when both oestrogens and progesterone are elevated – compared with the early follicular phase of the menstrual cycle – when both oestrogens and progesterone are low (Minson et al. 2000a; Carter et al. 2009b; Fu et al. 2009). During an orthostatic challenge, total MSNA (which takes into account the area under the MSNA burst) is also greater in the mid-luteal versus early follicular phase (Carter et al. 2009b; Fu et al. 2009) (Fig. 2)." In other words, the sympathetic (fight or flight) response that causes tachycardia, tunnel vision, digestive issues, nausea, and so on (a.k.a. dysautonomia), is increased in relation to the amount of reproductive hormones in the system. Makes sense, considering a majority of POTs patients are women between 15 and 50. This was taken from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3530109/ Nina Stachenfeld's research is focused on how hormones impact orthostatic tolerance. Very insightful stuff for those who believe they have POTs due to hormonal imbalances. I hope the POTs doctors are paying attention to her work. The good news is that estrogen, a potent vasodilator, drops after menopause. For women with chronic low blood pressure (a common trigger for adrenaline release) that could mean more normalized blood pressure and hopefully fewer instances of tachycardia.
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