Bailee Posted October 17, 2023 Report Share Posted October 17, 2023 Tips for newly diagnosed? My cousin was recently diagnosed with pots. I’ve been dealing with it for couple years. What advice should I give her? Is there anything you might have wanted to hear or any advice that may have helped in the early stage of your journey? Any tips that made management of a chronic condition easier? Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 17, 2023 Report Share Posted October 17, 2023 Oh @BaileeI did think about you and how you are doing. I hope all is well. I just PM'd you a link to a write up a young gal did in regards to POTS. There are helpful tips and the write is done well. Hope there are some takeaways that can be used. Quote Link to comment Share on other sites More sharing options...
Bailee Posted October 17, 2023 Author Report Share Posted October 17, 2023 Thank you! I’m doing so much better! I’m walking my dog doing exercises 3 times a week. I really appreciate your support and this page , don’t know what I would do without it!! Quote Link to comment Share on other sites More sharing options...
akj Posted October 18, 2023 Report Share Posted October 18, 2023 Bailee Don’t forget yourself as one of the most important support structures for your cousin. Having someone to talk to that is experiencing the same condition is one great huge help. Going it alone is so scary. akj Quote Link to comment Share on other sites More sharing options...
albertspa Posted October 19, 2023 Report Share Posted October 19, 2023 19 hours ago, akj said: Having someone to talk to that is experiencing the same condition is one great huge help Yeah I think introducing her to forums and channels that enable her to draw her own parallels and expand on her personal understanding of the condition could also be of great help when it comes to affirming her experiences with a diverse array of first-hand reports and substanciating it with medical literature. It's tough navigating that with a google search alone because initially you may not know which hubs are credible. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted October 20, 2023 Report Share Posted October 20, 2023 My advice is to seek care from specialists familiar with and experienced in treating dysautonomia/POTS. And I’d also suggest seeking care from Large, highly ranked, University affiliated, big city Medical Centers. Watch out for delays in care. My experience has been, wait 6 months to see specialist, they don’t have any ideas so they refer you on, another 6 months waiting. Repeat this 10 times and YEARS have gone by while you suffer! Fight for timely care and be strategic, schedule multiple appointments when possible to minimize waits. Stay positive, seek knowledge and reach out for support! Best wishes and Good luck! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted October 20, 2023 Report Share Posted October 20, 2023 Even though diagnosis is a positive step, it can lead to feelings of grief, anger, denial, sadness, etc. So just to watch out for those. I hope your cousin will have some improvements with treatment soon. Quote Link to comment Share on other sites More sharing options...
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