So today’s blog is about my journey with POTs syndrome (it’s a long one so maybe grab a cuppa or something) I’ve shortened it down A LOT other wise we would be here for weeks 😂🙈
First a definition of POTs
Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating chronic health condition. Simply standing up can be a challenge for people with PoTS as their body is unable to adjust to gravity. PoTS is characterised by orthostatic intolerance (the development of symptoms when upright that are relieved by lying down). Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing.
Well let’s start from the beginning….
I was suffering from constant vomiting and nausea, so as you do I went to my gp, who’s lovely response was ” your not exactly thin are you?” Which was exactly what I needed to hear when I felt like crap already 😂 but anyways he sent me away. The vomiting then got to the point where no liquids were staying down and I’d collapsed, I ended up in hospital for about 5 days to rehydrate and have a couple of tests done.as my issues presented themselves as gastrointestinal I was put under a gastro dr. Who literally left no stone unturned (gastro wise) and I was told that my illness was psychological as there isn’t anything wrong physically wrong (I didn’t agree).
So anyways to cut things a bit shorter this circle went on for about 2 years being passed from pillar to post until one stay in hospital a junior dr suggested to do a sit to stand blood pressure test. A student nurse then carried out the test to which my heart rate went from around 60 sitting to 195 standing!!!! 🚨🚨 he was shocked and thought he had done something wrong so he fetched his educator and they carried it out a few more times with similar outcomes. Thus the beginnings of heading into the right direction. The dr then sent me for a 24hour heart monitor and a tilt table test (the test for diagnosing POTs) which was the confirmation that I needed to set in stone I have got pots. So I was then passed over to cardiology, who basically did nothing! Just said there isn’t anything physically wrong with your heart deal with it 😔.
Another year goes by …I have a diagnosis yet still nothing has changed I’m still vomiting everyday and collapsing often, all I have is antisickness which doesn’t actually stop me vomiting 😥
so me and my family are at the end of our tether!!! We tried everything holistic to help including hypnosis (didn’t work for me) and Accupuncture (which actually works) and I still have Accupuncture every week to help manage my pain and other symptoms.
We then decided enough was enough and pushed for a referral to the Sheffield POTs clinic located at the hallamshire which was a god send!!!! 😇 it was so refreshing to talk to a health proffesional who knows what I’m going through and how much of a burden it is.
So now a new chapter has begun where I can see a future and am getting the help I need. So my advice to anyone who is going through something similar don’t give up!! You know yourself and even if it takes years you need to keep fighting to get the answers as it will eventually pay off. Like I say I’m still not improving but am on the right path and medication is being put in place to help me manage my symptoms.
So yeah finally on a more positive path!
Just want to say a massive thank you to my friends and family who have helped me a million and I cannot express how thankful I am to have them!!