Or also known as postural orthostatic tachycardia syndrome is where your heart rate increases to an abnormal rate when getting up from sitting or laying down. It more often that not affects women aged 15 -50 and it can cause dizziness and fainting which I have been suffering with for quite a few years (since a teen in fact) and nobody really knew why.
I have had numerous ECG’s due to tachycardia and I attempted the tilt table test to give some idea of what it was over the past year. My rheumatologist had decided last year that I was to leave things with him and he would see what is what with my health which was really nice when he was so busy.
The other week when he diagnosed my hypermobile EDS he decided that I had postural orthostatic tachycardia syndrome. I think it makes sense because I go tachycardic quite easily and my BP is quite low. Medical professionals and I always put it down to the medications I was on growing up but as I don’t really take anything now it had to be something else.
The NHS website explains what happens as this:
Normally when you sit up or stand, gravity pulls some of your blood down to your belly area, hands and feet. In response, your blood vessels quickly narrow and your heart rate increases slightly to maintain blood flow to the heart and brain, and prevent blood pressure dropping. This is all done without needing to think about it by the autonomic nervous system – the nervous system in charge of automatic body functions. In PoTS, the autonomic nervous system doesn’t work properly. There’s a drop in blood supply to the heart and brain when you become upright and the heart races to compensate for this.
The NHS website says that the symptoms are generally:
- dizziness or light-headedness – I definitely get this symptom and it leads to pre-fainting for me and really affects my day to day life
- heart palpitations – when this happens my heart figuratively feels like it is going to explode
- shaking and sweating
- weakness and fatigue – this affects my day to day life and probably is what makes people think I’m lazy
- headaches – these affect me frequently but I just thank whoever is up there they rarely reach migraines
- poor sleep – every damn night
- chest pain – I often get this around my sternum bone
- feeling sick – one of the main non crazy reasons I do’t eat
- shortness of breath – going up the stairs kills me yet I can walk for miles as long as I don’t stop that is when the trouble hits
- Some people notice that things such as feeling hot, eating, strenuous exercise and being on their period make their symptoms worse.
When we looked at the self care options as again there isn’t really treatment options and with the correct level of self care symptoms can either gradually ease or be eliminated; I did have a giggle to myself because I have to be very careful with some of it due to my lifestyle or my ileostomy. so the self care options are:
- drink plenty of fluids until your urine is pale yellow – in my appointment it said water and I said I need to drink more juice otherwise I would just lose more electrolytes and become more fatigued
- keep active, but pace yourself and choose your exercise wisely – swimming, rowing, lower limb resistance training, walking, jogging and pilates can help you keep fit and build muscle (strong calf muscles should help pump blood back to your heart) – I would love to be able to jog again but my EDS just doesn’t allow it anymore
- elevate the head end of your bed, so you’re not sleeping fully horizontal
- try wearing support tights or other forms of compression clothing, to improve blood flow in your legs
- avoid long periods of standing – I work in care…
- come up from lying slowly – sit for a while before standing
- avoid drinking lots of caffeine or alcohol – I don’t drink tons of alcohol but I do enjoy a cup of coffee so I may have to find a decent decaf
- include more salt in your diet – this isn’t advisable if you have high blood pressure or kidney or heart disease though, so ask your specialist first – this is a big issue for me because I know salt in the right amounts is great for you but I worry that it will allow my body to bloat then it triggers my body dysmorphia
Do you suffer from tachycardia and some of the other symptoms listed above? It maybe an idea to go to the GP or try out some of the self care options above and see if it improves.