I have promised for a while now to write a post on one of my more frustrating illnesses… PoTS, or Postural Orthostatic Tachycardia Syndrome. That is basically a fancy way of saying when I change postures, for example going from sitting to standing, my heart rate goes zooming up quite often over 100bpm and stays that high for as long as it wishes! This often comes with a few additional perks like dizziness, heart palpitations, headaches, a feeling of near fainting, nausea and plenty more. The actual criteria to be diagnosed with PoTS is to have a heart rate rise of over 30bpm or for it to exceed 120bpm within 10 minutes and to show symptoms with continued tachycardia at 10 minutes.
So what does all this mean and what causes it? When a ‘normal’ person stands up their blood is pulled to the feet due to gravity, the heart rate will increase to pump blood back up the body to the brain and the blood vessels in the legs contract to help squeeze the blood back up rather than it collecting in the lower body. Once it feels there is enough blood flow to the brain the heart will slow down to a normal rhythm. However, due to the hyper mobility I have from Ehlers-Danlos syndrome the blood vessels in my legs don’t contract the way that they should and therefore my heart has to continuously work hard to keep the blood flow to the brain. Some people can experience fainting with PoTS and also low blood pressure problems, but so long as I ensure I drink plenty of fluids regularly my blood pressure seems to stay on the ok side of low 😀
How does it affect me? This can vary from day to day, and I’m gradually learning which activities will leave me feeling considerably worse. The biggest issue I face is fatigue, and that isn’t just a feeling of being tired, it’s a weighted force pleading me to stay in bed or take a break or do anything other than carry on living … no can do! I won’t let this stop me no matter how hard it gets. If I have a really laborious day or I have a big cake to do I know straight away that I’ll pay the price with a few days of feeling shattered. Gradually I will learn to pace myself so I don’t exhaust myself quite so much but until then I shall soldier on! The rest of the symptoms I get I actually tend to ignore now, I know that may sound daft but I know their root cause and as it’s not something that can be fixed nor likely to cause me harm so I figure I should just crack on. If I have a particularly bad dizzy spell or similar then I will sit down or do some calf pumping exercises to help get the blood to where it’s required. The only other major symptom that affects me is the brain fog, I literally feel like I’m losing my marbles! The lack of blood flow to the brain can cause this foggy feeling and it’s actually really hard to cope with. I can walk into a shop to buy milk and once inside have no idea why I’m there or I may buy something I thought I needed even though I didn’t. I’m forgetful and disorganised and lack the sharpness I once had, it’s all very upsetting but at the same time, like everything else, I have learnt to accept it and carry on, there is no point dwelling on things I can’t change.
Is there anything I can do to help? Yes!! There’s no cure and no way of making the condition go but there are plenty of things I can do to limit symptoms and manage the condition. Compression leggings are a good start, they do the leg squeezing my legs don’t do – as it happens I wear them anyway because of the Lipoedema. Then there’s the drinking, the more you drink the more your body feels it has a larger volume of blood and it therefore helps to prevent blood pressure from dropping too low. Increased salt intake is really important too, the salt allows the body to retain the extra fluid and encourage you to drink more. Avoid major triggers, heat is the biggest one I’ve found – no more sunbathing, hot showers or bubble baths for me! Alcohol is another one, I feel so ill so fast it’s simply not worth it to me, and finally, standing is a mega no go! By that I mean standing still, so queuing, cake making, chatting I just can’t stand still. So, I calf raise, I fidget on the spot, I’ll bob around or if possible I’ll sit down! Stress, anxiety and other emotional situations are best avoided where possible, the fluttery heart makes me feel jittery at the best of times so when another stimulant is added it magnifies immensely! The last thing I have done is change my eating habits, I now follow the Ketogenic way of eating and it has helped me like I never imagined possible. I’m not super strict with it but I generally keep my carb intake below 30g a day, avoid all added sugars and stay clear of all wheats, grains etc. The result has been a massive change in my heart rate after meals, my fatigue has reduced and been replaced with some energy and I feel my circulation has improved possibly due to my Lipoedema swelling reduction. I had read about food impact before but I never made a huge effort to change things, it turns out they were right! To try and explain, when we eat, our body has to send blood to help breakdown the food we just consumed. In a ‘normal’ person the blood is sent to the stomach to breakdown the food whilst ensuring there is still plenty reaching the brain. In my body the blood is already having a hard time being where it needs to be and so when I eat sugary or stodgy foods which are hard to digest it means that blood is now needed elsewhere. This results in a further elevated heart rate as the blood is desperately pumped to where it needs to be …. this causes major post eating sleepiness and sluggishness! Not anymore though, thankfully keto has solved this problem, if I stay away from carbohydrates and refined sugars I feel wonderful. Being human I still slip from time to time and have a treat here or there but it seems I can cope with one offs, it’s the constant top up of indigestible foods that appear to cause me problems.
For now that is all I can tell you, I’m still learning myself and I will continue to try and expand my knowledge whilst I continue making steps to lead the life I want. The main thing I have started doing, and will continue to do, is keeping a positive and open mind. When I saw Dr Hagen last month (she’s my PoTS consultant) she actually felt content enough to discharge me as I was in such good control and mind state about it all, what a fabulous feeling that was! Onwards and upwards I say xxx