Jyoti Posted June 30 Report Share Posted June 30 Some interesting stuff here, including the STAT/Lumia situation we have discussed on DINET, Sjogren's and more: https://www.healthrising.org/blog/2024/06/30/lauren-stiles-dysautonomia_international_whats_up_doc_/ Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 1 Report Share Posted July 1 Ooh, good! Lauren very kindly answered a question I had about IV albumin and that information helped me realise I had autoimmune involvement which led to me seeing a rheumatologist and getting prescribed HCQ. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 1 Report Share Posted July 1 What caught my eye was Lauren talking about "The Insulin Resistance Dysautonomia Connection" @Water Lovershared a paper on this as well. I do believe that carbs affect dysautonomia folks more than one thinks. sure over time it is why folks finally figure out that a low carb and higher protein meals work out better for them and tend to avoid simple sugars. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted July 1 Author Report Share Posted July 1 I thought of you while reading that part, @MikeO! Canary in the coal mine? Quote Link to comment Share on other sites More sharing options...
akj Posted July 1 Report Share Posted July 1 Jyoti thank you so much for pointing out this conversation. It was excellent. I felt Lauren was extremely knowledgeable and well spoken. As she always seems to be. It was the kind of conversation I have longed to have with a medical person to help me understand what was going on and to give me the strength to keep going. I am embarrassed to admit I wept when she talked about those waiting for a good diagnosis and possible working strategies for management and how hard it is to keep going day after day. Though my one hopeful note is, that 7 months from now one Autonomic Disfunction clinic will accept me for evaluation. But as Lauren mention sometimes we learn more from our support groups then our doctors. And so that has been for me. Thank you , thank you Lauren for your thoughtful and learned talk. And to Jyoti for calling my attention to it. akj Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 1 Report Share Posted July 1 1 hour ago, Jyoti said: I thought of you while reading that part, @MikeO! Canary in the coal mine? Thanks Jyoti you are awesome as always. I just can't say the dysautonomia community has come up with the magic cure for some of the stuff we endure let alone a drug to fix our issues. success has been hit and miss as to treatments. More misses than hits. best i can say is go after what bothers you. it will make a difference. "trial and error". Not sure i am in tune with some of the stuff (including what Mayo comes up with) or dysautonomia international cites or some of the Doc push or some tech companies want to try and make money. Almost feels like players are taking advantage of folks with chronic issues that are looking for answers just to make money. VNS might work for someone but in my trek in the dysautonomia wisconsin facebook world dysautonomia got ripped for pushing it (does not work) even UWM gave it up. IMO Stat was a bit of a let down they are behind in development and from the start was not honest that they were crowdfunding. Mike Quote Link to comment Share on other sites More sharing options...
bumpkin Posted July 2 Report Share Posted July 2 7 hours ago, MikeO said: IMO Stat was a bit of a let down they are behind in development and from the start was not honest that they were crowdfunding. It's funny you mention that, because this is actually the part I've been most looking forward to about reading this article over the next couple weeks.. Cort likes to maintain optimism as many do and I get it, but sometimes things are a letdown and it's ok to say so, and there's no community that can so endearingly and economically exert an eviscerating wit quite like the HR comment section can.. for CFS patients who've been swept under the rug, there are some real lively personalities that come right out whenever they sense disingenuousness around whatever promises are being made. There are def players looking to take advantage of the chronically ill for money, but that audience tends to take a more guarded approach, it makes for some colorful conversations. Haven't had a chance to read it yet but as soon as I saw the URL my first thought was "ohh this one'll be good, those guys are gonna be all over that $379 price tag!" 🍿 Also the VNS (external device, not internal) has been a very helpful therapy for me, but it's just a therapy def not a cure. Still treating my gut to try to reverse what the mold/clostridia and nootropics did (the dysautonomia was bubbling under the surface for years, but the POTS symptoms were sudden onset following the brain chemistry upset after dabbling and overdoing it on brain/energy supplements). If my heart rate gets unruly then doing the VNS can help put it in check. I was in tears of relief the first time I had it done cuz at that point it had been weeks of symptoms with no end in sight, I was so terrified that I was permanently broken, and that first session made me finally feel half normal again for a bit, showed me my body is still capable of calming down with some assistance, so I'll keep working on getting it back to where it can do that on its own again. Definitely a lot of trial and error 🥲 Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 2 Report Share Posted July 2 10 hours ago, bumpkin said: Cort likes to maintain optimism I agree Cort does a good job at this. even a better job when some discussions get a little spirited. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted July 3 Report Share Posted July 3 12 hours ago, MikeO said: I agree Cort does a good job at this. even a better job when some discussions get a little spirited. For sure, I enjoy the CFS sass out there but it helps that Cort's a smart dude and generally well-reasoned, if there's a bright side with some scientific support he'll be able to counter with it and soften up the discussion Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 3 Report Share Posted July 3 @akj, I’m sorry you still have 7 months to wait. I think we (and our loved ones) have all cried an ocean over the unnecessary delays in diagnosis and treatment. Just yesterday I cried over the fact that for the first 15 years of my illness not one doctor thought to take my blood pressure when I was standing up. As it happens, it wouldn’t have shown anything for me (OCHOS), but I couldn’t help but think of all the other young people who must have paraded before the selfsame doctors with orthostatic hypotension in those years. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted July 5 Report Share Posted July 5 On 7/3/2024 at 5:20 AM, Sarah Tee said: Just yesterday I cried over the fact that for the first 15 years of my illness not one doctor thought to take my blood pressure when I was standing up. Man, I'm so sorry it took that long for you to start getting anywhere with your diagnosis.. that is awful and I woulda cried too. I was very lucky to already know of a reputable neuro chiro as soon as my POTS symptoms started, I already had functional drs helping with the mold illness after the house messed me up and they previously referred me for vestibular help so I remembered them and they got me back on track quickly. We really need more specialists in it who're willing to put the work into figuring it out and helping patients make progress, rather than just giving a diagnosis and taking their money and overbooking constantly and then disappearing when it's no longer profitable.. People need answers and help recovering if it's possible for them to get to a root cause. Sadly it usually takes someone experiencing it for themselves to become a specialist in it, and it's very difficult for them to overcome unless they luck into the right information to help get thru it and then get on to specializing to help others turn their health around too. Hopefully as awareness grows we'll see more doctors willing to put their focus where it's desperately needed, we really get swept under the rug as a community and it's crazy how the mainstream drs can just accept so many patients' lives being upended by dysautonomia and chronic fatigue/post viral conditions like it's nothing to worry about. I am personally at the end of my rope and if it weren't for my partner and family I would be homeless already. I would hope the recent long covid stuff will help bring more attention to it, but there's just no good reason after all this time why it would take this long for there to be widely known testing and treatments and therapies for this stuff.. I wanna say the system is broken but I'm afraid it must be doing what it intended to do because we're the only ones concerned about it. Whenever I go into a regular doctors office anymore I remember I'm in a totally different world, the drs who really help me these days don't take insurance and they don't put on white coats to do their jobs, they just help. Quote Link to comment Share on other sites More sharing options...
MikeO Posted July 5 Report Share Posted July 5 4 hours ago, bumpkin said: Just yesterday I cried over the fact that for the first 15 years of my illness not one doctor thought to take my blood pressure when I was standing up. I will keep this short none of my primary providers ever thought to take a standing BP it was always a tilt table test. the one that did the standing test well nothing changed. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted July 6 Report Share Posted July 6 @MikeO, ugh. I am sorry you missed out on this basic measurement too. I would like to maroon doctors on a desert island with a stethoscope and a sphygmomanometer. Quote Link to comment Share on other sites More sharing options...
akj Posted July 6 Report Share Posted July 6 Would appreciate your input. Besides Dinet what other internet sites do you regular check for information and good discussions on Dysautonomia? Thank you. akj Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted July 7 Report Share Posted July 7 This was a depressing and exceptionally frustrating listen. I had thought we had the pieces in place for useful research with potential solutions coming fast and furiously, but Lauren makes it sound like it's such a struggle to get anyone pointed in the right direction. The most interesting thing she theorized was that head trauma may have been a cause of her Sjogren's. I've had concussions and I can see how they'd be a potential cause of neurological problems (although mine were decades before any symptoms), but fascinating how she thinks they could have led to the autoimmune issues now too. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 28 Report Share Posted August 28 @akj, I find the following to be helpful: Health Rising website – focuses on ME/CFS and fibromyalgia, but often covers orthostatic intolerance and dysautonomia topics. Run by the unfailingly hardworking and positive Cort Johnson. https://www.healthrising.org Dysautonomia International Facebook page – has good summaries of research as it comes out. Very helpful because research papers are often behind a paywall. Dysautonomia International conference lectures – many hours of good content. Unfortunately, there’s no index, so you just have to scroll through them by date. I should create an index. https://vimeo.com/dysautonomia And checking PubMed occasionally for recent articles. For discussion, DINET is the best place I have found. It’s especially worth looking through the archives here – you will almost always find an intelligent (or comforting) discussion on any dysautonomia topic or symptom you care to search. The Phoenix Rising forum is also good, but it is focused on ME/CFS, and a couple of the main people who used to post very good summaries of research have stopped posting in recent times, although you can still appreciate their efforts from years past. There is one more place that I occasionally visit, but I have mixed feelings about it: https://www.s4me.info There are many folks there who can really analyse a scientific paper, which I find valuable as a layperson. But there is also an atmosphere created by one of the main people there that I don’t like. Quote Link to comment Share on other sites More sharing options...
akj Posted August 29 Report Share Posted August 29 Thank you Sarah. Truly appreciate your suggestions and the research you do. Maybe I have missed it, but have wondered how your cranial blood flow Doppler exam turned out. akj Quote Link to comment Share on other sites More sharing options...
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