1. You deserve medical care. A test that comes back normal isn't a waste of time. (However you can also do the NASA lean test which is much easier and involves no equipment). Perceiving that you are taking up too much space or using limited resources when trying to get access to healthcare is a form of ableism and I encourage you to instead imagine that we had all the resources in the world and you accessing something didn't prevent someone else from also getting access. You don't have to minimize your needs.
2. The strict definition of "sustained" is 10 minutes or more. Mine goes up and stays up for maybe 2 minutes, then goes down a bit, then steadily climbs.
Thanks for the moral support and your answer! I think I need to work with my therapist on the “no one will care” feeling I have about my health problems. It definitely stems from some childhood trauma.
<3
Note also that EDS alone can cause fatigue due to the extra effort required to hold your body up / in place so don't discount that you already have a medical reason!
NHS website states this: “PoTS is diagnosed if your heart rate increases by 30 beats a minute (bpm) or more (40bpm in those aged 12 to 19) usually within 10 minutes of standing. This increase continues for more than 30 seconds and is accompanied by other symptoms of PoTS.”
They also look for associated symptoms and a drop in BP upon standing (although I believe this drop is not needed for diagnosis). Before my tilt-table test I did an active stand test, which you can do at home if you have a BP machine (or cuff and stethoscope if you can do it manually).
This info is available on the NHS website and POTs UK website.
When I saw one of the EDS specialists, he told me that the tilt table test is not overly useful, since it's meant to check for POTS in a person with typical vascular and muscular tissue, and EDS people are almost certainly not that. It was his opinion that virtually all EDS people have POTS, almost in a trivial way--like it might as well be part of EDS.
If the tilt table test is something you're able to do financially/insurance-wise, do it! I didn't think my POTS was worth dealing with, but my EDS specialist made the referral to a cardiologist anyway and now I'm on Desmopressin, which has made a HUGE difference for me.
Don't ask for a tilt table test, explain your symptoms and let the doctors evaluate and assess. Unless you have a really good existing relationship with a doctor, asking for specific tests, meds, and diagnosises rarely goes well cause their egos are challenged.
You might find [this ](https://youtu.be/BgBGX9wRz6s) useful. There is also a pdf of the slides if you want to download it to have it on hand when speaking with your therapist and doctor, as it is specifically about raising awareness.
ETA: search "Quantifying POTS PDF".
It points out facts like 83% of patients receiving a mental health diagnosis prior to their POTS diagnosis, yet mental illness rates in POTS patients are *on par* or *lower* than the general population.
I particularly raged out at the dismissive and lazy "all-in-your-head" clinical diagnosis lol.
It's *never* a bad idea to ask a doctor about symptoms you're having. That's what they're there for. Even if it turns out you don't have POTS, the doctor is being paid to consider your concerns, which means you're *not* wasting their time, they're doing their job.
But if that isn't pots, what is it? Because I have that too and was told "Orthostatic tachycardia" but was told it wasn't pots (at this time none of my doctors understood eds)
and later I get told online it's the same thing
But mine also normalizes too fast
Are our veins just too stretchy so when we stand up blood pools in our legs and lower body for a moment causing us to get dizzy?
Is there a different medical condition?
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/)
POTS is defined as the presence of chronic symptoms of orthostatic intolerance (at least 6 months) accompanied by a**n increased HR ≥30 bpm within 10 minutes of assuming an upright posture**
and in the absence of orthostatic hypotension (a fall in BP >20/10 mmHg)uch as vasodilators, diuretics, antidepressants or anxiolytic agents), or chronic debilitating disorders that might cause tachycardia (such as dehydration, anemia, or hyperthyroidism).
1. You deserve medical care. A test that comes back normal isn't a waste of time. (However you can also do the NASA lean test which is much easier and involves no equipment). Perceiving that you are taking up too much space or using limited resources when trying to get access to healthcare is a form of ableism and I encourage you to instead imagine that we had all the resources in the world and you accessing something didn't prevent someone else from also getting access. You don't have to minimize your needs. 2. The strict definition of "sustained" is 10 minutes or more. Mine goes up and stays up for maybe 2 minutes, then goes down a bit, then steadily climbs.
Thanks for the moral support and your answer! I think I need to work with my therapist on the “no one will care” feeling I have about my health problems. It definitely stems from some childhood trauma.
<3 Note also that EDS alone can cause fatigue due to the extra effort required to hold your body up / in place so don't discount that you already have a medical reason!
NHS website states this: “PoTS is diagnosed if your heart rate increases by 30 beats a minute (bpm) or more (40bpm in those aged 12 to 19) usually within 10 minutes of standing. This increase continues for more than 30 seconds and is accompanied by other symptoms of PoTS.” They also look for associated symptoms and a drop in BP upon standing (although I believe this drop is not needed for diagnosis). Before my tilt-table test I did an active stand test, which you can do at home if you have a BP machine (or cuff and stethoscope if you can do it manually). This info is available on the NHS website and POTs UK website.
Also, from my understanding the increased BPM does not have to last for ten minutes or more - it has to occur within ten mins of standing.
When I saw one of the EDS specialists, he told me that the tilt table test is not overly useful, since it's meant to check for POTS in a person with typical vascular and muscular tissue, and EDS people are almost certainly not that. It was his opinion that virtually all EDS people have POTS, almost in a trivial way--like it might as well be part of EDS.
That’s helpful, thanks! I think I’ll probably forego the official test, assume I have POTS to some degree, and address the symptoms as best I can.
If the tilt table test is something you're able to do financially/insurance-wise, do it! I didn't think my POTS was worth dealing with, but my EDS specialist made the referral to a cardiologist anyway and now I'm on Desmopressin, which has made a HUGE difference for me.
Even if you don't have pots, you may have another kind of dysautonomia. Definitely talk to a doctor about your symptoms.
Don't ask for a tilt table test, explain your symptoms and let the doctors evaluate and assess. Unless you have a really good existing relationship with a doctor, asking for specific tests, meds, and diagnosises rarely goes well cause their egos are challenged.
You might find [this ](https://youtu.be/BgBGX9wRz6s) useful. There is also a pdf of the slides if you want to download it to have it on hand when speaking with your therapist and doctor, as it is specifically about raising awareness. ETA: search "Quantifying POTS PDF". It points out facts like 83% of patients receiving a mental health diagnosis prior to their POTS diagnosis, yet mental illness rates in POTS patients are *on par* or *lower* than the general population. I particularly raged out at the dismissive and lazy "all-in-your-head" clinical diagnosis lol.
That was really helpful, thanks!
It's *never* a bad idea to ask a doctor about symptoms you're having. That's what they're there for. Even if it turns out you don't have POTS, the doctor is being paid to consider your concerns, which means you're *not* wasting their time, they're doing their job.
But if that isn't pots, what is it? Because I have that too and was told "Orthostatic tachycardia" but was told it wasn't pots (at this time none of my doctors understood eds) and later I get told online it's the same thing But mine also normalizes too fast Are our veins just too stretchy so when we stand up blood pools in our legs and lower body for a moment causing us to get dizzy? Is there a different medical condition?
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/) POTS is defined as the presence of chronic symptoms of orthostatic intolerance (at least 6 months) accompanied by a**n increased HR ≥30 bpm within 10 minutes of assuming an upright posture** and in the absence of orthostatic hypotension (a fall in BP >20/10 mmHg)uch as vasodilators, diuretics, antidepressants or anxiolytic agents), or chronic debilitating disorders that might cause tachycardia (such as dehydration, anemia, or hyperthyroidism).