Standing Up to POTS @POTSActivist
SUTP works to improve quality of life for people living with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support. linktr.ee/sutp Springfield, OH Joined December 2014-
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Several clinical tests should be done on anyone suspected of having #POTS to exclude other diagnoses and look for underlying disorders. These include orthostatic vitals, heart and neurological examination, testing for #EDS, as well as blood work. #dysautonomia #SUTP #POTSie
Our Thursday laugh from @Doodlethru
FUNDED: For approximately 40% of #POTS patients, regular fainting is a problem. Developing wearable devices that predict fainting in POTS patients could be a game changer to prevent falls. We are proud to fund projects that could improve quality of life! #SUTP #dysautonomia
In this episode, POTS patient Jill and POTSpouse Mike describe their experience creating DoodleThru.com comics to laugh about POTS and the endless absurdities that come with it. Listen on your favorite platform or at ThePOTScast.org.
If your story was a book, it would tell the tale of bravery. It would describe all of the obstacles you had to overcome to be here, now. People want to hear that story. When you're ready, tell it. #POTS #chronicillness #spoonie
Many POTS patients also have mast cell activation syndrome (MCAS). If you haven’t yet learned about the connection between POTS and MCAS, consider listening to The POTScast. Our Thursday laugh from @Doodlethru:
FUNDED: Diagnosis continues to elude far too many #POTS patients. This team seeks to establish a rapid diagnostic process for diagnosing POTS that can be used in any healthcare practitioner's office. Normalizing and quickening the diagnosis of POTS will quicken proper treatment.
You’re not going to want to miss this one! Listen on your favorite platform or at standinguptopots.org/podcast.
Some illnesses cause visible disabilities. And some, like POTS, may not. Just because it cannot be seen does not make it any less real. What could someone do to make you feel seen?
A recent study found that children with #POTS have more changes in blood pressure than controls. They also had higher blood pressure at night, which might make sleep more difficult. #SUTP #dysautonomia #POTSresearch #POTSawareness
Our Thursday laugh from @Doodlethru
In episode 201, meet the ebullient Allie, a student at Purdue U. who makes a point of meeting one new stranger per day. How cool is that?! Listen on your favorite platform or at standinguptopots.org/podcast
Sometimes POTS feels like a dark cloud that overshadows everything, and we have to find light from other sources, like pet cuddles, a text from a friend, or even a really great doctor's appointment where we feel heard. What adds sunshine to your life? #POTS #chronicillness
A new study supports the use of external vagal nerve stimulators in #POTS patients. These stimulators activate the parasympathetic nervous system via the vagus nerve, and can reduce some POTS symptoms after using it for 2 months. #SUTP #dysautonomia #research
If Sports Illustrated existed for POTSies: Our Thursday Laugh from DoodleThru
Ever wondered how POTS, long COVID, and related chronic illnesses intersect with female reproductive issues? Dr. Leticia Soares published an article on this, so you don’t have to be embarrassed asking! Listen at thepotscast.org or your favorite podcast platform.
Navigating a chronic illness is a long and lonely path. It can feel dark and hopeless. When you share your journey - how you struggled, and how you persevered - you can help light someone else's path. You can be the hope they need to take that first step. #POTS #dysautonomia
Brain fog is a problem for many with #POTS, and worsens when standing upright. Many with POTS need to sit or lie down to do their best cognitive work. doi.org/10.1007/s10286… #SUTP #dysautonomia #POTSawareness
Our Thursday laugh from #DoodleThru
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Perceived burdensomeness, feeling like a burden to friends and family, is common in #POTS patients. This feeling can predict suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode! Listen at thepotscast.org.
If you're looking to donate to a great cause before the end of the year, you can make a difference by helping us fund #POTS research!
Won't you consider donating to Standing Up to POTS today? We need your support to continue our work supporting the #POTS community. Funding research. Educating via The POTScast. Sharing through social media. Every donation matters! standinguptopots.org/donate
Just a reminder that you can help support the @POTSActivist POTScast by donating! If you're still figuring out your year-end giving, our POTScast depends on wonderful supporters like you!
Dr. Alexis Cutchins wrote a comprehensive review of #POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about promoting good blood flow that might decrease other POTS symptoms. Listen at thepotscast.org.
Need a little POTS humor to get through the holidays? If so, you’re not alone! You can listen on any major platform or at ThePOTScast.org. Happy holiday season!
Perceived burdensomeness, feeling like a burden to friends and family, is common in #POTS patients. This feeling can predict suicidal thinking, particularly in men. We can change feelings of burdensomeness - find out how in this episode! Listen at thepotscast.org.
Won't you consider donating to Standing Up to POTS today? We need your support to continue our work supporting the #POTS community. Funding research. Educating via The POTScast. Sharing through social media. Every donation matters! standinguptopots.org/donate
We thank our friend Huzaifah for sending his poem about his experience with #POTS. Beautifully articulated, Huzaifah! #SUTP #POTSawareness #dysautonomia #spoonie
We are grateful to Isabela Herrera for sharing her #POTS journey with her listeners while interviewing SUTP founder Dr. Cathy Pederson. What a great opportunity to spread awareness! Listen at open.spotify.com/episode/4CSo7V… #dysautonomia #POTSawareness
One major treatment of #POTS is exercise. While exercise does not help those with comorbid #CFS/ME, it does help many #POTSies. Starting slow and building your routine over months or years can help to prevent symptom flares. standinguptopots.org/livingwithpots… #SUTP #dysautonomia
Dr. Settle is a psychiatrist who believes that mast cell activation is responsible for some symptoms of anxiety, depression, bipolar disorder type II and others. She treats #MCAS as a way to stabilize both mast cells and their emotional state. Listen at thepotscast.org.
Our Thursday laugh from #DoodleThru
Have you done the 24-hour urine test? This can be used to determine your baseline blood volume by looking at sodium levels and can help determine if IV fluids help your blood volume. Where sodium goes, water always follows! doi.org/10.1016/j.autn… #SUTP #POTS #dysautonomia
Leah's life changed after her family got sick in 2019. They rebounded, but she did not. She was diagnosed with POTS quickly, but remains largely bedbound and has had to shift her perspective to use her energy wisely for her family. Listen to thepotscast.org.
Emily was working as a medical assistant when she developed #POTS. While she was aware of POTS, receiving a proper diagnosis still took 7 or 8 months. Many practitioners were dismissive of her symptoms, leading to a delay in treatment. Listen at thepotscast.org. #SUTP
Our Thursday laugh from #DoodleThru
Dr. Alexis Cutchins wrote a comprehensive review of #POTS, including less-known treatments like oral contraceptives, gluten-free diets, and diosmin. Join her in thinking about promoting good blood flow that might decrease other POTS symptoms. Listen at thepotscast.org.
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