25/10/2022
HAPPY POTS AWARENESS DAY!!
Today is PoTS awareness day. PoTS made my life explode and change forever.
As you all know I’ve not been well enough to keep my business going since the start of 2022.
For 2 years now I’ve been suffering from Postural orthostatic Tachycardia Syndrome and its associated conditions. My condition has worsened since the end of 2021 but I am currently on new medications so I’m now able to partly function and attend sixth form part time.
I’ve not made a cake in forever so with the help of my family I thought it might be the best time to raise awareness for such an underfunded and misunderstood condition that so many people suffer from.
PoTS is a neurological disorder that affects the autonomic nervous systems ability to function correctly (a form of autonomic dysfunction/dysautonomia).
Symptoms include; tachycardia, fainting, dizziness and lightheadedness, pre-syncope, fatigue, low and high blood pressure, blood pooling, temperature dysfunction, nausea, headaches and migraines, GI issues, weakness, brain fog, shaking, chest pain, shortness of breath, neuropathic pain, cold hands and feet from poor circulation (raynauds) and so many more.
It’s also often said that people with PoTS are “allergic to gravity” but why is that? For example: When a normal healthy person stands, their blood vessels constrict and blood pressure and heart rate may increase a bit to compensate for gravity pulling blood down on standing to maintain blood flow to the heart and brain. However, when someone with PoTS stands, blood vessels either constrict incorrectly or not at all, meaning blood pools to the extremities which causes a large increase in heart rate to compensate for the loss of blood to the heart and brain (I’ve had an increase of as large as 90bpm-202bpm on standing on my worst days). This then leads to lightheadedness, blood pressure fluctuations, postural headaches, feeling weak and possibly fainting.
PoTS is diagnosed under the diagnostic criteria of an increase of 30+ bpm from a laying to standing position (40+bpm in children), in the absence of a drop in blood pressure and patients showing the appropriate symptoms.
It can be caused by many things including a viral illness, like COVID and the epistein-Barr virus, bodily trauma, surgery, pregnancy and underlying conditions. Personally my PoTS has been caused by an underlying genetic connective tissue disorder called Ehlers-Danlos Syndrome that we have recently found out runs on both sides of my family. After a COVID infection in October 2020, COVID exasperated my Ehlers-Danlos Syndrome and caused me to experience a “chain of events” leading to the diagnosis of multiple co-morbid conditions known to be associated with Ehlers-Danlos, including PoTS.
PoTS can be so disabling for so many people and has been compared to having a similar level of disability to heart failure.
This year has been a very hard year health wise for me, including being unable to leave the house without a wheelchair and being unable to stay conscious unless lay down, leading to ambulance calls and many A&E trips. I have thankfully gone from fainting everyday, up to 8 times a day, to only fainting 6 times since I starting new medications in August! My blood pressure is now stable but my heart rate still needs a lot of work.
Having an illness that people can’t see is very difficult to explain to others, especially now I am attending sixth form part time. Even though I’m there doesn’t mean I’m having a good day, there are no good days with chronic illness, there is always something, the clues in the name, ‘chronic’.
Getting ill has made me view the world, and life, in a totally different way. The negatives of being constantly exposed to the NHS that is not equipped to take care of chronically ill patients, always being gaslit or the illnesses made to seem not as debilitating as they actually are. Surprisingly, there is also a positive side, meeting new friends, one of whom is now one of my favourite people ever, and supporting each other through the highs and lows of dealing with chronic illness.
Never take anything for granted and always remembering that you never know what anyone is going through are 2 things I will now always stand by.
PoTS UK is an amazing charity that supports and educates patients, family, friends and healthcare professionals within the United Kingdom about this under recognised and commonly misdiagnosed condition by sharing up to date evidence and resources.
They are doing an amazing job and don’t get nearly as much recognition that they deserve.
I hope this taught you a little something about PoTS and how much it can have an affect on someone’s quality of life.
I hope to bake for you all again in the future. 💕
