Not so potty about PoTS

PoTS, short for postural tachycardia syndrome, is a combination of symptoms caused by an abnormality of the functioning of the autonomic nervous system.

This basically means that the nervous system, which is the system which controls the bodily functions such as heart rate, blood pressure, digestion, temperature control, bladder control, stress response, doesn’t work properly, so all of those things don’t work properly either.

Simply put, PoTS people get dizzy upon standing, especially after sitting down for a long time, and they may faint. This is because the body cannot properly regulate the blood flow, especially when moving to stand, so they become dizzy, weak and faint. It’s like having just given lots of blood, except all the time. These symptoms don’t just affect when standing but can also happen when sitting, lying down or when standing for too long, it’s just more noticeable when going from sitting/lying to standing because the body has to adjust more so it has more difficulty.

There are many problems arising from having a malfunctioning nervous system and all these make it very difficult for PoTS people to perform the same simple tasks which other people may take for granted.

I believe I have PoTS. The symptoms fit. But I haven’t really seen a doctor about it for various reasons. However, I have followed the guidelines of resting when necessary, trying to exercise, drinking lots of water, eating lots of salt and trying not to bend over or lean down. It does help though it’s hard to stick to these recommendations.

For me, one of the hardest issues with PoTS is the heat intolerance due to the body not being able to regulate temperature properly. I get hot very quickly, even going up the stairs makes me overheat. This is manageable in winter, although I have to stick to just wearing t-shirts if I’m walking a lot or doing housework. But in summer it can be extremely uncomfortable and difficult to manage. I can’t walk much, I hide inside a lot, I try to do as little as possible and drink lots and lots of water. Being hot makes me angry so I meltdown more often and faster. I sweat loads which makes me have a sensory overload leading to meltdown. It’s a nightmare.

It’s not easy for me to do much in the way of exercise or housework, some days if I hoover or do the dishes I have to rest for a long time afterwards both to cool down and to stop feeling tired and dizzy. Bending over to pick something up or clean makes me dizzy, feel sick and gives me a headache. I can’t move my head much because that makes my head hurt, gives me a headache or migraine and my eyes hurt and get blurry.

I rarely faint these days but in the past I have fainted quite a lot. One time, before I knew about PoTS, I had been feeling good and decided to dance around the house for a while. Eventually I had to rest so I sat down, then once cooled off I thought I’d get a drink. I remember feeling very dizzy and falling towards the table, the next I was lying on the floor with a very sore head in hysterical laughter. It was quite scary once the laughter died off. I’m not sure what causes the laughing, maybe it is linked to my emotional lability.

Another annoying symptom is brain fog. Due to the lack of blood flow to the brain I struggle to think and recall information. For a while I thought I had ADD until I found out about PoTS. Some days I struggle to put two thoughts together in my head, other days I can almost manage fine. It makes me feel a bit thick as I’m often left grasping for information like trying to hold water in my hands, fogginess is the right word here to describe how it feels.

Fatigue is a common symptom, I’m always tired, even when I haven’t done anything. It feels like I can never get enough sleep and I tire quickly. It’s just something I have to live with, never feeling like I have enough energy. I’ve never woken up in the morning full of energy, I wonder what that feels like.

Vision problems are another symptom, if I use the computer or read too much I get headaches, my eyes go blurry, patterns hurt my eyes and cause them to go blurry. I seem to be able to see better if I’m constantly moving my eyes, staring at one particular thing for more than a few seconds makes it look blurry too. It’s very annoying because there’s nothing actually wrong with my eyes, it’s just the PoTS.

Other symptoms that I experience are presyncope (almost fainting), palpitations (feeling like my heart is thumping too fast and hard), weakness (sometimes I cannot hold anything or stand up because my body is so weak), shakes/tremors (if I’m having a bad moment/day my body trembles and my muscles shake), shortness of breath (just walking up the stairs makes me gasp like I’ve run a marathon, other days I’m the same even though I haven’t moved a muscle), chest pain (occasionally, sometimes I have to hold my breath because breathing is painful, it usually passes after a few minutes), excessive sweating (usually as a result of overheating), gut problems (or in my case IBS) and poor sleep (sometimes I wake in the middle of the night or occasionally I can’t sleep, most days I sleep okay but I’ll always wake tired, often more tired than before I went to sleep).

Symptoms vary from person to person and they can range from infrequently or mild to all the time and severe. Each person is different but it impacts upon life enough to be classed as a disability. It definitely impacts my life so much that I struggle to do regular activities like a regular person.

8 thoughts on “Not so potty about PoTS”

  1. I too believe I have POTS. All the same symptoms. Saw one cardiologist but he was dismissive about my symptoms so I was scared to mention POTS. Am going to see a different guy soon. I kind of want him to put two and two together and mention it though, as when I suggest things I can appear ‘pushy’ and get ignored. But, yeah, I’m sure I have POTS. Loads of folks with EDS do. And yes, hoovering is hard. Also showering. And the stairs.

    1. I’ve heard it’s one of those conditions they don’t like to diagnose, the majority of conditions I have are ones that most people won’t diagnose :/ so annoying. Good luck with the new guy, hopes he’s a better listener than the last one.

  2. It does concern me a bit, Riko, that you could be compromising your long term health by not getting diagnosed.
    Is there treatment that could make life easier? If not, then I get to some extent why you aren’t bothering and you obviously have done your research!
    Just a thought xxx

    1. I don’t think there’s any treatment :/ it seems most are told to drink lots of water and eat lots of slat and exercise gently. Some people get salt tablets and iv fluids but there’s little anyone can do really. Just like all the other conditions I have too lol it’s all management and no cure :p

      1. I know this will not be well received but I have read,a lot of your blog and it seems like you are jumping on the bandwagon of a lot of “syndromes” and maybe just don’t diagnose yourself so much and your life will be easier. Mental illnesses are real, I am bi0olar, but you seem to be trying to find conditions that will explain why you feel strange. Sorry, JMHO

      2. When you get breathless and dizzy just walking up the stairs, faint and bang your head on the table just because you stood up and get so hot walking down the street so you have to go out in just a tshirt in the middle of winter in the snow, and your doctors just dismiss any concerns, you kind of go looking for answers yourself.
        Trust me, I wish these things were fixable.
        A lot of research went into these things and I would never self-diagnosed on a whim. For example, I originally considered whether I have ADD, but upon realising I have PoTS I realised that the lack of proper blood flow to the brain is what is causing my memory and attention problems, not ADD.
        It’s actually really common for autistic people to have comorbids, and there seems to be some sort of link between autism, EDS and PoTS. Though I’m pretty sure I don’t have EDS, my mum and sister might though as they have many of the symptoms.

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