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Understanding POTS


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I'm known to ask a lot of questions, so please bear with me... I have tried to Google all this up, but this condition is still so hard to understand for me. I want to help my husband, who's too tired to study his own illness, so I would be greatfull if you could share your knowledge with us.

Why beta blockers and such are recommended to get rid of the orthostatic tachycardia, if POTS patients NEED more oxygen in their brain, and blood pressure and tachycardia are the body's way of delivering it? Doesn't it make the lack of oxygen worse in the brain?

Have you found any tricks to temporarely remove POTS symptoms, for example does bending down and putting your head between your knees make you feel better? Are there any oxygen treatments available for common people, and have you tried them?

Is the horrible sick feeling of POTS really just about lack of oxygen in the brain, or would a POTS patient still be ill, even if his brain would be perfectly "oxygenated"? I know that there are many subtypes and comorbid conditions that could make POTS even worse than it's basic form might be, but if we think about for example an autoimmune POTS, would a drug that removes autoantibodies cure POTS? What confuses me is the dysautonomia: is there dysautonomia, if the cause behind the POTS is autoantibodies?

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A lack of blood to the brain is i think the most common cause of the brain fog for pots, but there are a few others as well.  Oxidative stress can also impair mental state and can be associated with pots.  My endo told me that low T can cause brain fog too.  

You probably know this already, but dysautonomia is an umbrella term that refers to a dysfunction of the autonomic nervous system, and POTS is one type of dysautonomia. The term POTS is really more of a description of the main symptom rather than explaining the underlying cause. I think that using the term POTS to describe our illnesses would be a little like if we just said that we had a cough when feeling ill since there are lots of different underlying causes why one might have a cough.  You can address the cough symptom directly with some cough medication, but the cough goes away once the underlying issue is resolved.  So in your autoimmunity example, I think that it is fair to assume that dysautonomia goes away if you were able to resolve the underlying autoimmunity issue.  Unfortunately, the treatment of POTS is mostly focused on addressing the symptoms at this point.

Beta blockers are often prescribed because they are known to reduce tachycardia and blood pressure for most people, but sometimes those with POTS dont tolerate them for the reasons that you describe.  You will probably want to keep a close eye on your husband's blood pressure while he is on them.

For temporarily relief of symptoms, just laying down and trying to relax is about the only thing that has worked for me.

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Thank you haugr. I try to innovate ways to relieve my husband's symptoms, but as you said, lying down is the only thing that helps. It's frustrating to see a loved one suffer, and there's nothing you can do to help. I've tried to find experiences on "bottled oxygene" products, but I know that if those would help, they'd be part of the recommended treatment.

My husband suffers from anxiety, because he doesn't know why he has to lie down for over a half an hour after just brushing his teeth for a few minutes. This illness still doesn't quite make sense to us on the "molecular" level. There's no literature about it in Finnish, so I try my best trying to understand the scientific English papers... I still don't know what is the suggestet treatment, if alpha 1 adrenergic autoantibodies are behind my husband's POTS, wouldn't alpha blockers do similar damage than those autoantibodies?

Our neurologist is a symphatetic one, but knowledge about the POTS subtypes hasn't reached him yet, so I'm a bit worried if he'll listen to us if/when the time comes to try more than just Propranol.

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  • 3 weeks later...

I'll post more questions under this thread, so that I wouldn't flood the forun with lots of new topics...

Do you know what's the mechanism behind instant immediate tachycardia upon standing, versus a tachycardia that comes with a delay and builds up slowly? Does the fast reaction come from the baroreflex? The tilt table test instructions say  "tachycardia within 10 minutes", my husband always gets an instant reaction and keeps a steady 120 bpm pulse when he stands, so I'm wondering if this is another clue to his POTS subtype.


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