Sarah Tee Posted July 26 Report Share Posted July 26 On 7/23/2024 at 1:34 AM, tenef246 said: Does anyone know if this device is available to buy in the UK or anything similar? No, it’s US only for now, and there’s nothing similar on the market. You can sign up for email updates using the field at the bottom of the home page: https://lumiahealth.com And the US release is only just trickling through to people who signed up for different packages. So there’s a way to go yet. The only other option to measure cerebral blood flow in orthostatic intolerance is a Doppler ultrasound scan in combination with autonomic testing. I haven’t heard of anyone doing that in the UK, but that doesn’t mean it’s not available at one of the specialist centres. Mind you, it’s only needed for diagnosis if you have one of the orthostatic syndromes that doesn’t affect heart rate and blood pressure. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 10 Report Share Posted August 10 July 2024 newsletter: https://us21.campaign-archive.com/?u=2113bd09885b19f0c11d1a14e&id=b89760ab0f Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 22 Report Share Posted August 22 Just a reminder that the first round of financial assistance applications closes 24 August 2024. US residents only. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted September 20 Report Share Posted September 20 The first batch of units is being dispatched: https://us21.campaign-archive.com/?u=2113bd09885b19f0c11d1a14e&id=d61672f6bd Also includes link to new talk from staff with different perspectives (inventor, scientist, patient): Quote Link to comment Share on other sites More sharing options...
bumpkin Posted September 21 Report Share Posted September 21 19 hours ago, Sarah Tee said: The first batch of units is being dispatched: https://us21.campaign-archive.com/?u=2113bd09885b19f0c11d1a14e&id=d61672f6bd Also includes link to new talk from staff with different perspectives (inventor, scientist, patient): Thank you for the update Sarah Have been thinking recently that I would like to get one of these eventually, if I can.. Would be nice to have the data on myself to help make better day-to-day decisions and identify what's going on, triggers, what treatment makes sense, etc. Maintaining my blood sugar has done wonders for helping control the dysautonomia, but then there's times like tonight where bp and hr are both low and I just don't know what I did this time, if it's just POTS type symptoms cropping up from low blood volume (which also, how! I went for IVs two days this week) or if the sense of feeling like death is just another impending reactive hypoglycemia episode working its way to the surface (hope not, those dreadful tachy episodes really beat me up) So being able to measure and monitor this stuff would go a long way towards better understanding the ins and outs of my condition and hopefully find new ways to prevent symptoms. Trying to fall asleep during bradycardia bothers me almost as much as the tachy episodes.. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted September 21 Report Share Posted September 21 @bumpkin, yes, similarly I would like to know whether my afternoon slumps correlate with reduced blood flow. Also it would be great to know when my medications take effect, and if there are any “blank spots” in the day I could fill in by staggering doses, which might be visible in the data. Sorry to hear you are struggling even after IVs this week. Quote Link to comment Share on other sites More sharing options...
MikeO Posted September 21 Report Share Posted September 21 5 hours ago, bumpkin said: Have been thinking recently that I would like to get one of these eventually I have been tracking this since the day @Sushigave the group heads up to the device. I almost jumped on board and bought in the the early offering but have other priorities for now and would rather wait for the product to mature a bit more. I do see a use for the device as potentially being very helpful. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted September 24 Report Share Posted September 24 On 9/21/2024 at 6:39 AM, Sarah Tee said: @bumpkin, yes, similarly I would like to know whether my afternoon slumps correlate with reduced blood flow. Also it would be great to know when my medications take effect, and if there are any “blank spots” in the day I could fill in by staggering doses, which might be visible in the data. Sorry to hear you are struggling even after IVs this week. Thanks Sarah, I wound up scurrying down to the kitchen and somehow managed with some salty snacks and electrolytes 🐿️ thankfully didn't wake up the rest of the house with my middle-of-the-night 1:30AM chip bag rustling and crunching at the counter like a critter 🦝 Starting to understand how some people need to do the IVs every day, I definitely get a boost from them the day of and usually on the day after (if I haven't already overexerted by then), but since a day when you're feeling good always feels like the only day you'll get anytime soon to be able to go do everything you possibly can.. the positive effect usually doesn't last much longer than that lol. Would be nice to identify that crash happening in live time on the app and have it serve as a reminder to take a seat and pace myself before it gets there, rather than continue unwittingly depleting all my energy and dealing with PEM the next day or two. Hopefully one of the lumias makes it way to you eventually, if the device delivers on everything they say it can help with, I think you'd do especially well with what you'd get out of it.. you've done a ton of research already, so having something like this would just empower you to put more puzzle pieces together. As they accurately put it: "Even a neurologist or cardiologist cannot measure postural changes in blood flow to your brain, except in a handful of special labs equipped with both Transcranial Doppler Ultrasound and a Tilt Table for measuring Cerebral Blood Flow (CBF) during Autonomic Function Testing." It sounds like it could fill the biggest gap in data that we experience.. feels like it's one of the most important factors in the whole mess of it, heart rate and bp are simple enough to track but sometimes that'll correct itself while the bloodflow to the brain is still lagging behind hours later. Still trying to bounce back from over a day ago, it's scary when it leaves you that foggy. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted September 24 Report Share Posted September 24 On 9/21/2024 at 7:55 AM, MikeO said: I have been tracking this since the day @Sushigave the group heads up to the device. I almost jumped on board and bought in the the early offering but have other priorities for now and would rather wait for the product to mature a bit more. I do see a use for the device as potentially being very helpful. For sure, the more I think about the things I don't/can't know about my condition (due to the lack of home devices available to measure these types of things) the more I hope to be able to add this one to my toolbox. Would be very interesting to see what's goin' on up there from hour to hour and figure out how to keep it balanced out. Would think I'd be used to it after nearly a year now but the setbacks through the weeks are so disappointing, been trying my best to stick to my routine to avoid getting debilitated but some days it just doesn't work for one reason or another. It clicked that this would be very valuable since my struggle is heavily with the cognitive stuff. Quote Link to comment Share on other sites More sharing options...
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