“F**k, I don’t feel so good. I really need to sit or lie down. Like, RIGHT NOW. But I don’t want to appear like I haven’t been listening, like I don’t care, like I don’t appreciate the gravity of the situation, or like my needs are more important than theirs.”
This is what goes through my head every time I find myself in a situation where I need to have a meaningful conversation whilst standing up. Ya know, when I should be listening properly, processing what the other person is saying, and giving well-considered responses. In other words – being ‘present.’
Problem is, it’s REALLY hard to focus when my brain is being starved of oxygen, my heart is racing in an attempt to ‘fix things’, my blood pressure is sinking faster than the Titanic and I’m feeling increasingly lightheaded, clammy, and nauseous.
I’ve had Postural Orthostatic Tachycardia Syndrome (POTS) for six years. As such, it has been over six years since I was last fully ‘present’ during a conversation whilst standing still.
POTS feels a bit like an allergic reaction to gravity. When our bodies are upright, gravity naturally forces our blood downwards. In healthy people, the autonomic nervous system (ANS) kicks in and makes our blood vessels contract to pump the blood back up to our brain and organs, providing them with much-needed oxygen to function. However, the ANS is all outta whack in POTS. This dysfunction causes our bodies to really struggle with pumping the blood back up, which leads to blood pooling in our legs and feet, as our hearts beat way too fast to try (and fail) to increase the blood flow – eventually leaving our brains no choice but to gradually shut us down in the name of survival, unless we lie down quick smart.
Before my body shuts down, there’s usually additional warning signs that I need to lie down: brain fog, poor concentration, memory loss, pounding headache, tinnitus, and I become overwhelmed by sensory overload. Some of these symptoms are always there, varying in severity – but all become amplified the longer I stand still.
Yet, most people don’t realise when I’m struggling to stand up – because contrary to how I feel … I look okay. Or at least, I do until I can’t take it anymore and end up having to sit or lie down before I fall down.
Today is POTS Awareness Day. So, this is me … standing up for NOT standing up.
Hi there! Firstly, I’m so sorry that this happens to you, how utterly frustrating! Secondly, I can relate to most of what you say but have not had a diagnoses, although I do have ME and there is overlaps. My heart rate fluctuates dramatically, I get heart palpatations and sudden dizziness (but the room isn’t spinning as such it’s just a strange feeling), my cheeks burn up like you could fry am egg on them even in the cold sometimes and like you say I have times where I’ll only feel better if i lay down. Oh and I have suffered from sensory overload which stops me from being able concentrate on whatever I’m suppose to be doing and wears me out. Sorry, for the essay, just wondering if this does sound familiar/relatable to your experience and how you got it diagnosed?
Hi Natalie! I’m so sorry you can relate to most of what I’ve said. You’re right about there being overlaps between the symptoms of ME and POTS. There’s an easy way to test for POTS at home. Just lie down for about 5 minutes until you’re relaxed – and take your pulse. Then stand up, and (standing still) take your pulse again. In POTS, your heart rate would increase by 30+ bpm within the first 10 mins, and not go back down. In healthy people, a slight increase upon standing is normal, but then it slows back down as the body regulates itself. Whereas in people with POTS, it just keeps beating too fast and we start to get all the other really uncomfortable feelings that make us need to sit or lie down. The dizziness you’ve described (without the room spinning) and being unable to concentrate on what you’re doing sounds familiar to me. For me, the need to sit or lie down becomes all encompassing as I progressively feel worse and worse. My POTS was diagnosed by a cardiologist with a special interest in POTS (not all cardiologists are familiar with it, so be careful who you see if you do get a referral). He diagnosed me after doing a Tilt Table Test.
I’d definitely recommend doing the home test I’ve described first, and if you think you might have POTS then definitely talk to your GP about it and maybe ask for a referral. Good luck!
Man…I sometimes feel like my body is being pulled down by cinder blocks to the bottom of the ocean…and I’m fighting it with all my strength…all while just standing there… exhausted…just wanting to collapse to the ground.