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Amelia’s Daily Life - Living with POTS

Amelia is 22 years old and living with POTS, Postural orthostatic tachycardia syndrome.


This means her heart rate increases very quickly after getting up from sitting or lying down and she suffers from very low blood pressure.


Amelia suffers from symptoms such as dizziness, palpitations, dizziness, light-headedness, fainting, chest pain, shortness of breath, shaking, sweating and nausea.



What do you do first thing in the morning when you wake?


My body loves lying down. That way blood can flow better around my body, so it's the getting out of bed bit that is the real struggle. I usually lie for a bit after taking my Midodrine (meds to raise blood pressure ) and also my slow sodium tablets (these helps to fill my veins with more fluid). Plus propananol to slow my racing heart.


How does feeling poorly get in the way of your day?


Nowadays not as much. My POTS has really improved in recent years, thank goodness. At one point it left me literally unable to walk, so I was in a wheelchair and my days were mostly spent lying down or crawling around the house on my hands and knees, as otherwise I'd faint. POTS is usually a secondary condition and the key to it improving often lies in diagnosing that and also getting on the right POTS meds.


What symptoms do you live with day-to-day?


I still have symptoms - palpitations where my heart races and I can feel it pounding in my chest, dizzy spells, random sweats and bouts of nausea. These are now manageable. I was eventually diagnosed with Mast Cell Activation too and helping to get that under control with anti-histamines and mast cell mediators, also improved my POTS. I am now back to work and can live my life in a much more normal way. You end up being grateful if you just have a few symptoms, rather than ones which turn your whole world upside down (in my case literally...all that fainting 😂).


Is there anyone in your life who supports you on a daily basis?


My boyfriend has been my hero! He stuck by me when things were really awful and I was bed bound or in a wheelchair, fainting whenever I moved.


If you could change one thing about your daily life what would it be? 


People understanding that just because my illnesses aren't always visible they are real.



Share a top tip for our readers on getting though through day


If you have POTS SALT is everything! If you feel dizzy or faint, put a tsp of Himalayan rock salt into a few mouthfuls of warm water and down. It's a great rescue remedy!


Also, try some slow sodium tablets - you can buy them over the pharmacy counter and they have proven life changing for me (if you suspect you have POTS it's also a good way to suss it out to see if these help you!).


Oh and don't give up on the idea that life will get better...I am now in a position I never could have imagined, upright!




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