What Goes Up, Comes Back Down if You Lay Flat in a Cool Room. Welcome to POTs

Tired isn’t a good place to be. Then tired and in a bath because your bones ache. Except the bath was warm.

I started feeling a bit weird then realised my heart was thumping. Not just thuds, but making my boob shake thumping (yes-  I did watch it with amusement. no – there’s no photos). Thankfully my phone is super cool and has a scanny thing at the back that uses the same medical tech as those clippy things doctors put on your finger. By placing my finger on the back of my phone, it can measure my heart rate and oxygen sats.  This is quite useful when you’re feeling potsy.

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The definition of POTS (or Postural Tachycardia Syndrome ) is a rise of 30 bpm on (or within 10 minutes of) standing or rising. This is also affected by changes in temperature. I currently have an appointment for testing in December having been picked up for symptoms in the summer and having my EDS specialist confirm this is likely having watched my heart rate rise, and refer me on. (My life is one big referral ).

Generally, my resting heart rate is around 60 bpm and regularly falls to 54/55 bpm which is reasonably low but doesn’t cause me any ill effects. Until it starts racing. Which it started doing tonight.

So assuming a more normal starting rate of 60 bpm,  I grabbed my phone and decided to watch my body go crackers out of morbid fascination. A bit like poking a bruise, or a wasps nest…

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Initially, again assuming a resting rate of 60 bpm a rate of 90 bpm just lying in the bath was not anything unusual. But, seeing as my boob was doing a little Tachycardia dance, I figured I’d keep an eye on it and told myself that if I went tunnel vision or it hit 120 bpm, I’d hit the panic button that sends a help me text to Mr Geek.

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I was feeling quite dizzy, but I wanted to wait it out a bit longer before disturbing Mr Geek.

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Still laying down, it crept up. Some people with POTS will currently be scoffing at my measly 107bpm when they easily reach 140. However, it’s not a competition and heart stuff makes different people feel odd at different levels. Anything above 110 makes me nauseous and dizzy.

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Talking of which. Now was a good time to ask Mr Geek for some help. I cooled the water down and sat in my tepid water whilst he shaved my legs & washed my hair for me. As he helped me out of the bath my right knee made an appalling noise and I replaced my patella with an equally revolting snap sitting on the loo seat whilst Mr Geek made gagging noises in the corner. (Welcome to hormonal wobbly week!)

Eventually, I just laid down on the bed and now laying down watched my heart rate slide back down. Just to make sure it would go down and any measurements weren’t affected by breakthrough drugs.

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It’s weird when it does that. It’s not particularly dangerous  (aside from fainting in the bath), but it leaves my chest achey and where I thought I was exhausted before, I can now barely type on my phone (I’ve dropped off three times writing this & it’s taken an hour!).

It’ll be interesting to see what the autonomic specialist says, especially about my inability to stay warm. Until then, more sleep, less heat & continued fascination about my weird body. 🙂

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5 thoughts on “What Goes Up, Comes Back Down if You Lay Flat in a Cool Room. Welcome to POTs

  1. We are not supposed to take hot bathes but when you ache all over, what is better for your aches than water has hot as you can stand it?Most of the time I can handle it fine but sometimes they do bring on the POTS and then I go from burning alive to sweating to freezing and a good 1/2 hour lying down to regain my composure. I cannot seem to figure out why sometimes I handle a hot bath with no trouble and other times it brings on an “episode”? I know the risks, but the reward is worth it especially now that cold weather is upon me.

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  2. Check out the cooling vests at GlacierTek. I’m essentially homebound, but when I have to got to the store (I’m 51, single, and pretty much on my own most of the time) or MD office, it keeps my core at about 56 degrees… if you get one, also get an extra set of cooling inserts. They last for about 2-3 hours depending on ambient temperature – so need to be exchanged- but they ‘reset’ in an insulated bag with ice packs in it for longer excursions. It has been a game-changer. I’m still not able to walk around much (just got a wheelchair), but the vest at least makes short trips (and the yearly family Christmas Eve party) possible ! They’re about $200 per vest with the 4 inserts it comes with (4 pockets in the vest)- but talk to them if that’s too much money- sometimes they’ll help when people can’t afford them.

    It’s been 40 degrees outside, and my AC has been on. I’ve found that I can’t do what I want to be comfortable (bath or shower temps- and showers are safer for us since the depth of the water isn’t likely to kill us), I have to do what keeps me conscious ! That’s something people don’t understand about why I live in a home that supports healthy icicle growth 🙂 It has nothing to do with comfort. I’d love to be able to sit in front of a fire with hot chocolate and kick back in the winter.

    I have to avoid any hot food, no heated pools, in the winter most places have the heat on where I live, so that’s not good, etc. Everybody’s triggers are different- but there are some things that can buy time (the vest, squeezing your thigh muscles, getting somewhere cool, and of course lying down).

    Have you had your thyroid checked? Not being able to stay warm is a big symptom of low thyroid.

    Hang in there 🙂

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