Thank you for the very important information. I have been dx with NCS, MCAS, CHIARI-1. I have had syncope since childhood, however, things got worse after Shingles virus. I wish the medical profession would get with this. Thank you so much. Hugs from sunny Florida. Albina Marques
Thank you so much. We are so glad you found the information helpful. A shingles virus is a good example of the kinds of viral infections that can cause POTS. I'm sorry that happened to you. All the best.
I’m presenting being assessed to see if I have POTS, is there a positive outcome with right treatment and support for this? I just want a “normal life” again. What was said about the end treatment was spot on, nobody seems to join the dots up.
Great question. Yes, there is absolutely positive outcomes with the right treatment and support. It takes time and patience and in most cases, a lot of trial and error, but over time the majority of people learn to manage symptoms and will have long periods without any symptoms at all. For some, POTS will resolve itself over time, but for most it comes and goes in what are commonly called "flares". Over time you will also learn what can bring on a flare up of symptoms and prepare yourself by giving yourself extra care. It is something that most people have to learn to live with to some extent, however, not as severe as it is when you first become ill because you understand the disorder and you know what makes symptoms better or worse. Knowledge is everything with this disorder, both educating yourself about the disorder and paying close attention to your body. But there is good reason to feel optimistic. Thank you for the question and best wishes going forward.
I think it might be possible to have more than one type of " pots".. But idk.. I have no idea what type I have. My blood pressure is sometimes low, sometimes normal, sometimes pre hypertension, other times it narrow pulse pressure. My worse symptoms are tachycardia, short of breath, tight lower chest, tense muscles, hot flashes, pain, migraine, brain fog, lots of punctuate lesions in frontal lobe, osteoarthritis, occasional light headedness, constant tinnitus and I do have hypothyroid and hypermobility... Some times my heart rate goes up 30 to 40 bpm just rolling in bed.. Other days I can stand up and it's normal.. But no matter the heart rate I always have symptoms! Some days I just stand up and have terrible air hunger, other days I don't get short of breath until I exercise for 20 minutes.. But I cannot exercise much at all anymore without excessive tachycardia /sob. . and I used to be very athletic. It's a terrible condition! The day I had my TTT it showed "pots ". I feel bad for everyone who has pots!.. Oh and there are other people in my family who have pots or pots symptoms! Also I cannot tolerate steroids at all! I got pots after a bacterial infection and surgery
The symptoms you name are common with POTS and other forms of dysautonomia. It is understandable why physicians who are not specialists to have such a hard time diagnosing this condition. Yes it is difficult to live with but it can be managed over time. We hope you found the video helpful. The more you learn about the disorder the better off you will be to managing it and for having vital conversations with your doctors. Best wishes.
Thank you for the very important information. I have been dx with NCS, MCAS, CHIARI-1. I have had syncope since childhood, however, things got worse after Shingles virus. I wish the medical profession would get with this.
Thank you so much. Hugs from sunny Florida.
Albina Marques
Thank you so much. We are so glad you found the information helpful. A shingles virus is a good example of the kinds of viral infections that can cause POTS. I'm sorry that happened to you. All the best.
Hello, greetings from Estonia, thank you for information.
Thank you so much. We are so glad you found it helpful.
Thanks for this video! I feel like there may be a hormonal element as well. Right before my period, my symptoms are unbearable.
How can I contact Susanne? I was recently diagnosed with hyperadrenergic POTS, it's rare, so would be great to receive advise.
Regarding EDS, if you’re double jointed and hyper-mobile, & contract covid, developing long covid, could that trigger both types of POTS?
I’m presenting being assessed to see if I have POTS, is there a positive outcome with right treatment and support for this? I just want a “normal life” again.
What was said about the end treatment was spot on, nobody seems to join the dots up.
Great question. Yes, there is absolutely positive outcomes with the right treatment and support. It takes time and patience and in most cases, a lot of trial and error, but over time the majority of people learn to manage symptoms and will have long periods without any symptoms at all. For some, POTS will resolve itself over time, but for most it comes and goes in what are commonly called "flares". Over time you will also learn what can bring on a flare up of symptoms and prepare yourself by giving yourself extra care. It is something that most people have to learn to live with to some extent, however, not as severe as it is when you first become ill because you understand the disorder and you know what makes symptoms better or worse. Knowledge is everything with this disorder, both educating yourself about the disorder and paying close attention to your body. But there is good reason to feel optimistic. Thank you for the question and best wishes going forward.
I think it might be possible to have more than one type of " pots".. But idk..
I have no idea what type I have. My blood pressure is sometimes low, sometimes normal, sometimes pre hypertension, other times it narrow pulse pressure. My worse symptoms are tachycardia, short of breath, tight lower chest, tense muscles, hot flashes, pain, migraine, brain fog, lots of punctuate lesions in frontal lobe, osteoarthritis, occasional light headedness, constant tinnitus and I do have hypothyroid and hypermobility... Some times my heart rate goes up 30 to 40 bpm just rolling in bed.. Other days I can stand up and it's normal.. But no matter the heart rate I always have symptoms! Some days I just stand up and have terrible air hunger, other days I don't get short of breath until I exercise for 20 minutes.. But I cannot exercise much at all anymore without excessive tachycardia /sob. . and I used to be very athletic. It's a terrible condition! The day I had my TTT it showed "pots ". I feel bad for everyone who has pots!.. Oh and there are other people in my family who have pots or pots symptoms! Also I cannot tolerate steroids at all! I got pots after a bacterial infection and surgery
The symptoms you name are common with POTS and other forms of dysautonomia. It is understandable why physicians who are not specialists to have such a hard time diagnosing this condition. Yes it is difficult to live with but it can be managed over time. We hope you found the video helpful. The more you learn about the disorder the better off you will be to managing it and for having vital conversations with your doctors. Best wishes.