I don’t usually talk about having Postural Orthostatic Tachycardia Syndrome (POTS). It’s one of those things that I’ve always kept private, not out of shame, but because I didn't really want to share it openly. It makes my life pretty challenging, and we've had some really tough times as a family as a result.
It's a condition I've always had and lived with it seems, that just got a lot worse after I had children (particularly my son, which interestingly also happened to my sister). Once I got a diagnosis I didn't want it to change who I was. I was determined to live my life without the fact I have POTS or Ehlers-Danlos Syndrome (which I also have) taking over my identity, or be all I am, it's just something I have to deal with in the background. But today, on POTS Awareness Day, I thought I might share a little bit of my experience, because over the last few years reading other people's experiences has helped me so much, picking up useful information, tips on how to manage the condition, and learning from others.
What is POTS, and what does it do?
For those who aren’t familiar with POTS, it’s a form of dysautonomia that affects the autonomic nervous system—the system responsible for regulating involuntary functions like heart rate, blood pressure, and digestion. When someone with POTS stands up, their body struggles to properly regulate blood flow, leading to a significant increase in heart rate (plus other stuff). This can cause a range of symptoms, some of which are difficult to explain to people who haven’t experienced them. It's pretty debilitating and makes life rather challenging. There is no cure, and quite limited support.
You might have seen the occasional story in the press about people who are 'allergic to gravity', or, more recently, seen the lady in the wheelchair on 'The Voice' (I've linked to a few articles at the bottom of this blog). It is supposed to be a rare condition, but it seems to be everywhere (or maybe that's just because I have it so I spot it). It's something that is becoming more common now too because it's also associated with long covid (although I seem to have it due to having Ehlers Danlos Syndrome which it's very commonly linked with).
You can read all about it on the NHS website (Postural tachycardia syndrome (PoTS) - NHS (www.nhs.uk)) but for ease, here are some of the common symptoms that come with POTS:
Dizziness and light-headedness: One of the most frustrating symptoms is feeling like you're going to faint just from standing up. Considering how much humans stand up, it's pretty annoying. Some people with POTS end up in a wheelchair.
Rapid heart rate (tachycardia)& heart palpitations/chest pain: The hallmark of POTS is an abnormally fast heart rate upon standing, often leaving you feeling breathless or like you're having a panic attack. I can get crazy palpitations that feel like one of those things from Alien is about to burst out of my chest. Fun times.
Fatigue: POTS can cause a deep, unshakeable fatigue that no amount of sleep seems to cure. It’s not just being tired—it’s an overwhelming sense of exhaustion that can make even the simplest tasks feel monumental. You get this with EDS too. So I feel completely exhausted. A lot.
Brain fog: Sometimes, my brain just won't work. I struggle to think, to focus, forget simple things, or find myself zoning out mid-conversation. Really annoying when you're trying to get stuff done. What the hell will I do when this happens in menopause too?
Nausea and digestive issues: POTS can disrupt normal digestion, leading to nausea, bloating, and bouts of stomach pain.
Headaches and problems with your sight: such as blurred vision or tunnel vision. Because it sometimes involves your blood pressure crashing and going too low, this leads to lots of scary symptoms.
Exercise intolerance: Doing physical activities that used to be second nature can become a struggle, as my body often feels like it’s running on empty.
Those are the listed symptoms you find online. But others I experience (and see from support communities and talking to specialists are quite common) include:
Trouble raising my arms: This is super annoying. When my arms go above my heart, my heart struggles. So reaching things in high cupboards, doing exercises which mean holding my arms up, or putting up a picture cause POTS flare ups.
Weeing Constantly: My friends joke about the amount I wee, but one issue with POTS is you have to drink more (recommended 3 litres per day instead of 2) to increase your blood volume which doesn't help, but also seems to travel through me at alarming speed. If I'm having a 'Potsy day' I can end up going for a wee every 15-20 mins. Really inconvenient.
Rubbish Absorption: Lots of us end up taking vitamin supplements because our bodies don't seem to absorb the nutrients from stuff properly, so we end up deficient (I've found taking sublingual supplements works a lot better because of this). It also contributes to being dehydrated despite drinking plenty. It just goes through you.
Migraines: These are common with EDS and POTS. They get worse when I do too much, or when there are air pressure changes or the air pressure is too low (if it's stormy I feel awful!). When things kicked off after having my second son, I described it to doctors and specialists as feeling like a had deep heat cream filling my brain.
Dead right arm: No idea why, no one's ever answered this one for me, but when I get a bad flare up and feel like I'm having an alien bursting out of my chest, my right arm tingles and goes numb. When this first started happening a freaked out that I was really having a heart attack. Now I know it happens when my symptoms are flaring up badly and it goes away after resting for a while.
Cold and Sneezy: Following a flare up, I get really cold (we're talking top, jumper and a very fluffy dressing gown, under the duvet and just not being able to get warm) and quite often having what seems like an allergic reaction to absolutely nothing (that's probably MCAS, another associated condition that was mentioned I might have by doctors but never followed up). No idea why, but maybe something to do with my circulation/crappy blood flow. Just part of the pattern.
I’ve been fortunate in many ways—my symptoms aren’t as severe as so many other people, and I’ve managed to find my own ways to cope. But that’s not to say that it doesn’t make life difficult, especially when I have a flare up. It makes life REALLY difficult sometimes. Simple things like going shopping or making plans with friends can suddenly seem daunting when you're unsure if you’ll have the energy or if standing for too long will make you feel lightheaded. Then add the complication of having active children that you need to run around after, and things get super tricky!
POTS affects everyone differently, but for me, some days I feel mostly functional, and other days it’s like my body just says, “Not today.” On those bad days, even sitting upright for long periods of time feels impossible. As much as I want to ignore it, POTS can get in the way of living life the way I want to, forcing me to make adjustments or cancel plans when symptoms flare up.
The stuff you don't see
When people see me out and about, you'd never know something was wrong. But it's taken a good few years to get to this point. I've learnt a lot about my body, and with a lot of very very helpful advice and help from a wonderful specialist I saw I've been able to work out a system that works for me and keeps be relatively functional.
If I don't look after myself and keep on top of my condition, I end up bed bound. I have to lay down. A lot. I have horrendous heart palpitations. My blood pressure drops and I can't function. I get blurry vision, my right arm goes dead and tingly. I've had convulsions and fits in the early days when it was really bad, and I didn't recognise when to stop (once my husband called an ambulance and it was super embarrassing). I can't function. And I can't look after my kids. This is not ideal.
When it first got bad, after having my son in 2019, I was in a right state. I was in bed for 4 hours a day, hiding in a dark room, unable to move and suffering. Struggling to look after my little girl and new baby. My husband having to do so much on top of working while I wasn't able to function. I felt so helpless, and like I'd never have a life. I got really depressed, and I was frightened I wouldn't make it to watch them taking part in things like nativity plays, or getting to parents evenings, or days out at the zoo etc. My kids got used to mummy having to lay down 'again' and just laying there while they played. It was incredibly depressing.
We started a long journey to get help. MRI's, CT Scans, Tilt Table Tests. NHS staff suggesting I 'just lay down more' and 'get family members to help' was not practical with a small baby and a toddler, no family support around, and a covid pandemic! Trips to and fro from London to see specialists (who actually helped and worked with me to find a way to get me functional rather than telling me to give up and lay down all of the time, so I will be forever grateful to them). I was fortunate to see Dr Gall, a cardiologist specialist who also happens to be the Patron of the Pots UK Charity, who was absolutely wonderful. Over time, and with a LOT of learning, experimenting and hard work, and the help of some medications, things have got better now
So I've had to find ways to manage my condition. To keep me functional. There's all sorts of things I'm doing out of sight to keep me doing things day to day:
I have to rest. A lot. Before I go on a shoot, or take my kids to the zoo or something, I'll have to factor in time to lay down and rest beforehand. I barely notice doing this now as it has become second nature, but I'm sure to an outsider I would look sooooo lazy. I actually do my best thinking when I lay down. Probably because blood is finally reaching my brain. Bit of a nightmare when you're trying to sleep at night and your brain wakes up. My iPhone notes app is FULL of brain dumps because of this.
If I notice my nose and lips tingling, I know I've done too much and it's a warning that I need to lay down before things get worse. It took a long time to recognise this pattern, and I have no idea why it tingles, but it does, and if I don't act on it, I have a monumental flare up and I'm in bed for 4 hours, unable to do anything, feeling like I'm having a heart attack, and my right arm goes numb. So now, when I feel that little tingle, I either lay down, or make an effort to get to a point where I can lay down as soon possible.
I drink electrolyte drinks and take supplements. I increase my salt intake to raise my blood pressure and help me to retain water and increase my blood volume. These help me to feel better and combat the fact my body just wees everything good out. It costs a bloody fortune (£40 per month just on this, but when I stop taking this stuff the exhaustion increase is very very noticeable so it's worth it). I also see a chiropractor once a month because my joints are awful and I have scoliosis (which are more to do with the EDS bit). She's bloody marvellous and understands my condition (which is super helpful). Big shout out to Phoebe at Riviera Wellbeing!
I use compression leggings to increase blood flow back up to my heart, and I recently got
these jazzy air compression boots that do the same. So I make sure I use these when I know I'll be doing a lot of standing or I'm not feeling well. Prevention is better than waiting until it all goes bad.
I take medication. I was prescribed a drug called midodrine, that works kind of like a compression stocking for your veins and helps that blood get around your body instead of pooling. After I was first diagnosed I had to take it every 4 hours during the day (and I couldn't lay down for those 4 hours or my bloody pressure would go too high). Now I've got my body to a point where I only take it occasionally.
I exercise. One of the biggest things my cardiologist and neurologist recommended. Your body can get deconditioned to moving about and standing up when you don't do it much, and exercise really can help (despite POTS causing exercise intolerance). When things were really bad this was absolutely impossible, but my cardiologist prescribed me midodrine which got me functional enough to start moving around more, then exercising, and now I'm mostly off the medication and trying to exercise frequently. It's like training your body to get used to being upright I guess. I don't do crazy amounts of cardio (my heart struggles with that) but weights and things I do. And I go to pole dancing classes when I'm well enough. When I have a flare up, this goes downhill and it takes a while build back up to it. But keeping fit (or fairly fit) makes a huge difference. If I do too much though, it can cause a flare up. And when I stop for a while, like during the summer hols when I'm having to look after the two children, I notice my body starts to slip and not cope with the POTS symptoms so well. So it's a balancing act.
I get Botox. Yup. Botox. It's horrible. It's not the kind that you get done to make you look wrinkle free (my forehead still has full movement and many many wrinkles). It's mostly all over my skull, under my hair, and my neck and shoulders. I think it's 37 injections, and they're right on the bone and each one feels like a really horrible wasp sting. Honestly, it's horrible. I fainted once because my blood pressure crashes while they were doing it. I have to go to the hospital every 3 months for this delightful experience. But it has changed my life as I've gone from daily migraines to very occasional migraines (mostly when the air pressure drops or I've been really overdoing it).
If I feel a bit iffy, or if I have to raise my arms up, or if my hands go cold because the blood isn't flowing to them properly, I open and close my fists repeatedly, kind of pumping my hands. It helps. Don't think anyone notices, but if you see me at the Gym or in my Pole Dancing classes you'll spot me doing this every so often.
None of these things are very glamourous. Some of them look rather silly to outsiders. But if they keep me functional I really don't care.
When you have a chronic illness, especially an invisible one like POTS, it’s easy to feel like you're stuck in a constant battle with your body. My strategy has always been to push through (with careful management of course) and live my life as if these conditions weren’t part of it. I work, I have a social life, I do fun things with my kids, I try to do all the things I want to do without letting POTS stop me. I run my own photography business, and recently launched a magazine for Business women in Devon (along with my friend Stacey) called Athena Magazine. We were on BBC news and interviewed on the radio. It's such an achievement! I started back at Pole Dancing classes, which I did before I had kids for many years (back then used to compete in competitions and things) which I thought I'd NEVER be able to do again at one point. I even took part in a pole dancing show back in February (which was soon followed by a massive flare up and took me months to get over fully, but it was worth it!).
In some ways, this mindset has been empowering. It’s given me the strength to keep going, to not let the illness take over my life. But the truth is, that approach isn’t always easy, and it doesn’t always work. There are days when I simply can’t pretend that everything is fine. On bad days, standing up feels like running a marathon, and my heart races so fast it feels like it might burst out of my chest. Even simple tasks like walking across the room or taking a shower can be exhausting, and I end up feeling like a massive failure. The worst mum to my children, a shit wife, a crap friend, and a huge burden on those that I love. I might not talk about it often, but those moments are a reminder that no matter how hard I try, POTS is still there, lurking in the background. I couldn't get through it all without the incredible support of my wonderful husband. The last few years have been tough, and especially after having my son, so incredibly tough on us as a family, while we worked to find a way to live with this shit. And he's stuck by me, helped me, and dealt with all of the things I couldn't do. And I'm so grateful.
Finding Support Through Others’ Stories
Hearing other people's stories does help you feel less like it's 'just you', and I learned new tips and strategies for managing the condition that I might not have discovered on my own. Whether it’s finding the right balance between hydration and salt intake (High 5 Electrolyte drinks changed my life!!), wearing compression garments, or simply learning to listen to my body and rest when I need to, these insights have been invaluable.
More than anything, though, it's nice to be reminded that you're not completely useless, which when you compare yourself to the people around you who are managing life so easily (well, I say easily, more easily than me!) can end up being the way that you feel. It's helpful to see that it's not just you and be reminded "it's the POTS".
I don’t suffer as severely as some, and I’m so grateful for that. For anyone else out there living with POTS, whether your symptoms are mild or severe, I want you to know that you’re not alone. It’s okay to not always be okay. And it’s okay to share your story—or to keep it private if that feels right for you, like it always has been for me. But on this POTS Awareness Day, I wanted to step out of the shadows a bit and share a part of my journey, because the more we talk about this condition, the more awareness we can raise, and the more support we might all get. Particularly from some of the more dismissive members of the medical community (we all know what that's like sadly).
Happy POTS Awareness Day!
Photo credits - Pole Show Image by Black Rain Fine Arts
Others are phone pics taken by me and my daughter (when she steals my phone)
POTS in the press - a few Articles:
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