ME, Myself and I: POTS

I’m not sure if this is meant to be written as POTS or PoTS, it seems to be around as both. The one seems to stand for Postural Orthostatic Tachycardia Syndrome, the other does not have Orthostatic in there so it’s Postural Tachycardia Syndrome. I don’t know if there’s any difference between the two, it seems like maybe it’s just depending on the country as both have the same symptoms and triggers.

Either way I thought I’d do a post about this as I was diagnosed with it recently, I think it was June, and was told that actually a large percentage of people with ME have this, depending on the source it’s either between 40% and 80% which seems to be a big range but I’m not sure which is the more accurate.

Before I start with the post properly I feel like I should do a bit of a disclaimer thig. I am not a medical expert, I have no qualifications to do with medicine. This post is just what I have been told and hopefully someone will find it helpful. If you want to know more about it there are a couple of links I have found in the post. If you think you might have this then go and talk to a medical professional about it.

I know a few people with ME who were diagnosed with it in the past but I wasn’t sure if I had the same thing as I’ve sort of always had this. Some of the symptoms I’ve had as long as I can remember so I’ve not known any different, I used to just think it was normal to not be able to stand still for long amounts of time. I guess that’s the thing, I’ve been told that a lot of people who have ME have this but it didn’t just start when I had ME. Have you ever had something suggested to you by a GP and looked it up or read the leaflet and you tick most of the boxes but you’ve just always been like that? It was like that for this, the first time I remember feeling like it was when I was about 9 or 10 and we went to France and it was hot, I couldn’t really do anything as I kept almost passing out but was told it was just I wasn’t used to the heat. I also couldn’t sit long on those high stools you get in science or sit or stand up for long in assemblies or things like that when I was in school way before I was diagnosed with ME.

I guess I should explain what it is, POTS (I’ll stick with the one abbreviation I was first given) means that when you stand up, or are stood for longer period of time, your body doesn’t do what it’s meant to to get enough blood to your brain. I’ve been told that when you stand up if you’re healthy your blood vessels contract, your blood pressure can rise a little bit and you heart rate rises a small amount to make up for the fact that your brain is higher than it was sat down and you need more pressure to get the blood there but it isn’t by much and isn’t noticeable to you. When I stand up my blood pressure sometimes drops a bit but my heart rate always goes up a lot (it’s normally in the 80s or 90s when I’m sat down but goes up to 120s or 130s within minutes). I know the blood pressure drop doesn’t happen with a lot of people with POTS, I think it may be something slightly different when your blood pressure always goes down before the heart rate increase but I’m not sure. I just feel really shaky and sweaty and get a light headed feeling like I’m going to pass out though I haven’t fainted, I know that it does happen to quite a few people with it though as some of the people I know who have been diagnosed with POTS have fainted because of it.

Apparently also it can mean that the blood doesn’t circulate the way it should and blood can sort of pool in your feet or when you’re sat down in the bottom of your torso, not in a way like you’re bleeding but just it doesn’t go back up the blood vessels properly and you just get sort of tingly red feet. I think the light headed feeling and this are the two main symptoms that I get alongside the high heart rate. I know there are other symptoms though. This page from PoTS UK is quite helpful, actually their whole site is helpful if you have POTS or think you might. I have a printed off version of the PDF page that I keep in case I see a different GP who doesn’t know what it is or just to explain to people as it’s fairly easy to read.

I know that a lot of people get diagnosed with the tilt test. I have to admit that was the main thing I was anxious about when I heard what POTS was and the diagnosis process. I didn’t have one as I had an appointment with a cardiologist who knew a lot about POTS in a local hospital and he went through my symptoms, took my heart rate and blood pressure sat down and stood up and said that I didn’t need one as he thought my case was obviously POTS with the heart rate increase and symptoms.

I’ve been told there are a few ways to treat it, these can include exercises, medication, changes in diet or other things to try. I won’t go into the medication because I have been told I shouldn’t try it as my blood pressure goes high at times and it could become dangerously high on them. However there are a few changes that I’ve been told to try which are easy enough in everyday life so I thought I would post them.

Increasing salt intake is apparently meant to help increase my blood pressure. Not to a stupid amount but I do not like salt, I don’t add it to things and most of the food we have isn’t processed so my salt intake was very low. I have managed to increase it but I still find it hard to get it to the recommended daily amount on a slightly restricted salt diet. I’m not sure how much this is helping with the POTS but my blood pressure has increased slightly, it’s still within the good range but it has done its job. This is not something I would say to do without talking to your GP,  all of these you should, but it might be worth asking whether they think it might help.

I found some exercises on one of the POTS sites, I can’t remember which. One of them was to stand up, leaning against a wall with your feet slightly apart and increase the time you spend like that each day, stop if you feel light headed but it should help increase how long you can stand up. I’ve not found much difference with this but I’m still doing it. The other is to sit on the ground and have a weight of some kind (I think a kettle bell was recommended) and move it from one side of your body, drop it and then pick it up and move it to the other side on the ground next to you. It’s meant to improve your core muscles which helps with circulation on your torso. Working on your calf muscles is meant to help but I haven’t found any particular exercises recommended. I tend to find that exercise makes me feel worse and light headed so I haven’t tried yoga or anything like that but I am going to start a proper exercise routine, even if it is just walking, when I’ve got over this virus and see if that helps in the long term.

Compression socks are meant to help, or rather I’ve found that tights are recommended more but the thought of having compression things around the tops of my legs does not sound fun to me, I’m not sure why. I have however tried socks as I was given some in the hospital the other week. I’m not sure if they’re helping all that much but I’ve still got them and I know on that day I didn’t get the light headed feeling I do from sitting up for too long and I was sat in the same chair for ages at one point so I’m hoping these might be a simple solution. I think they’re fairly easy to find anyway but I’m not sure on the colours available. I did read somewhere you can get them on prescription in the UK but I haven’t looked into that yet.

Staying hydrated is definitely important, apparently increasing the amount of fluid you drink is meant to help as you can have less blood volume when you have ME or POTS which I found interesting. At the moment I’ve been told around 2.5 litres is a good amount to aim for though it’s hard to drink that much sometimes.

My main coping mechanism is just to fidget, which sounds a bit odd, like when I’m stood up I move on the balls of my feet if I can’t sit down or I clench and unclench my hands. When I’m sat down I just move in the chair, which may get on other people’s nerves if I’m somewhere busy like a doctor’s waiting room but it does stop me from feeling so weird and stops my legs from getting all shaky or tingly which does sometimes happen. I think this is one that I’ve always done, it’s something that helps me to feel better so I just naturally started doing it years ago whereas the others weren’t things I knew about.

I think one of the main things that’s helped me is, now I know what some triggers can be, I’ve worked out the things that affect me. I have never been good in hot places so I don’t think I’d want to go on holiday somewhere hot, or at least go somewhere with air conditioning if we did. As well as the standing up for a long time I do find that while I’m sitting down for a while I get light headed, especially when I’m sat in a restaurant eating. One which I’m not sure if affects other people but isn’t on the list is I get the same feeling when I’m in a lift that goes down a lot of floors very quickly, slow ones I’m ok with but the ones in tall hotels are not my friend. I think that having worked these out it helps quite a bit, I’m not saying that I avoid these things completely but when I do start to feel weird when I’m doing any of them I know why. That was one thing to start with, it’s very scary to suddenly have your heart racing and feeling like you might pass out and there’s no real reason for it.

At least with a name for it I can explain to people, a bit like getting the ME diagnosis, it’s not like it suddenly makes it all go away but at least knowing what it is means I have ways of coping and know why it’s happening.

I’ll just put a couple of links down here as well, the one is for the PoTS UK one I linked to before (they have some good leaflets and information in the link at the bottom) and the other is to a page on STARS, it’s just the one page but it’s on PoTS and has some videos on it which I thought were quite good.

If there’s anything you see on here that you think is wrong then please say, I’m only going by what I’ve read and experienced so it may be different. Also if you have any good websites about it I can add the links to, I haven’t found many that I know are reliable and some of them are a bit scary when you read them.

Sorry this post ended up a lot longer than I meant it to and it’s all text so it’s a lot to read, I just didn’t want to miss anything out or not explain something properly. I started writing a post about this months ago but I didn’t get round to posting it and it’s sort of grown from there. I hope it was useful to someone at least.

6 thoughts on “ME, Myself and I: POTS

  1. Chronically invisible says:

    I just found a sugar-free electrolyte powder that I add to water to try to stay hydrated. Might help if you have trouble staying hydrated. It helps me a bit, especially in the morning.

    Liked by 1 person

      1. Chronically invisible says:

        I’m using Ultima Replenisher. It’s sugar and gluten free. I react weirdly to sugar so that was my main criteria. I have the red raspberry I like the taste it’s a nice change from water. I have a friend who uses VegaSport which I think is also sugar free.


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