Potty problems and POTS

POTS and potty issues go together like (cold purple) hand and glove, so it seems. According to the recent study at Baylor Medical Center, 46% of POTS patients reported "irritable bowel symptoms" [1] and the recent Danish study of post-vaccination dysautonomia patients reported that 55% experienced "change in bowel habits" [2].

It is widely acknowledged that diarrhea and constipation are common issues for POTS patients, but I've been wondering if there is a third kind of potty problem that is rarely discussed. I'll call it "toilet terrors," for lack of a better name.

Toilet terrors is when POTS symptoms, such as lightheadedness, chest pain, chest tightness, heart palpitations, dizziness, shortness of breath or pre-syncope get worse while going number two. I've seen many shy postings online about it, from patients who worried they might pass out or were having heart attacks or panic attacks, and wondered what the heck was going on.

For those who experience something like this, it's pretty scary! But there doesn't seem to be any mention in the research or literature. I've asked over 20 doctors about it, and none of them had any insights. I'm guessing that many patients never bring it up, because it's a hard conversation to start. So we used the POTS Patient-Powered Survey to ask if patients had experienced POTS symptoms getting worse while on the toilet. Please forgive all the puns, but here's how it came out:

These findings suggest that toilet terrors are experienced by a substantial number of patients...and not infrequently.

Update: Upon discussing these findings with patients, it has come to light that dozens of patients have fainted or passed out while having "toilet terrors." So BE CAREFUL! Inform your doctor, get his/her advice, clear any hazardous objects from areas where you might faint, and consider getting really soft and padded bathroom mats. Heck, maybe you need a potty helmet. Don't wait to make a plan until after you've cracked your head open!

Hopefully this information can help shy patients with potty problems speak up, to come out of the (water) closet and can encourage doctors or researchers to share their insights, if they know what's going on. Given the prevalence, a dialogue seems warranted. Maybe toilet terrors offer clues about POTS. Even if they don't, it would be comforting for sufferers just to know they are not alone, and to have doctors' advice on what can be done about them.

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  1. Proc (Bayl Univ Med Cent). 2015 Apr; 28(2): 157-159
  2. Brinth L, Theibel AC, Pors K, Melhsen J (2015) Suspected side effects to the quadrivalent human papilloma vaccine. Danish Medical Journal 62(4):A5064


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