this post was submitted on 09 Dec 2024
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Chronic Illness

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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.

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How do I accomadate her?

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[–] [email protected] 3 points 3 days ago* (last edited 3 days ago)

Sorry I’m late. I’m really wouldn’t read the cleveland clinic article which is not a very good source.

I have POTS. The simplest way to accomodate for your partner is simply to listen what she needs and be mindful about what tends to affect her condition. Also while some treatments help some people with POTS there is no widely recognised (FDA-approved treatment) so dont expect her to get better, it’s also usually a lifelong condition. POTS is a very common condition in Long COVID, so if your partner had COVID 6 months or less before her POTS started, she will fit long COVID diagnostic criteria too. The POTS label will be more useful than the long COVID label, as long COVID is a label for any chronic illness triggered by COVID.

The most important thing for you to know is POTS primarily affecting women, and it is not regularly taught in medical schools. Some medical doctors, especially overworked or patriarchal ones, will likely not take the diagnosis seriously and blame her illness on “anxiety” or “functional neurological disorder” (the modern euphemism for hysteria), so make sure to steer clear of those doctors if you do encounter them.

Here’s a resource to learn more about pots: https://me-pedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

If you want to get into the science, recent research suggests POTS isn’t a very useful distinction from regular orthostatic intolerance. So the POTS label may not stand the test of time. The illnesses included under the POTS label are likely not correlated with tatychardia, which is what the entire idea the clinical concept of POTS is based around. Hopefully, further research will shine light onto this. https://mecfsskeptic.com/the-problems-with-pots/

[–] jordanlund 1 points 1 week ago

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

"Postural Orthostatic Tachycardia Syndrome (POTS)

Postural orthostatic tachycardia syndrome (POTS) is a condition that causes a number of symptoms when you transition from lying down to standing up, such as a fast heart rate, dizziness and fatigue. While there’s no cure, several treatments and lifestyle changes can help manage the symptoms of POTS."

I don't have that as an official diagnosis, but I have had similar symptoms following two heart attacks, open heart surgery, a stent, and congestive heart failure.

In MY case, it appeared to be medication induced. They took me off carvedilol and put me on metoprolol which helped, 2 other drugs got reduced by 1/2, and the problem has now largely gone away.

Just she just have POTS on its own or is it in relation to something else?