PoTs Explained and my Symptoms
Postural Orthostatic Tachycardia Syndrome also known as Dysautonomia (PoTs). That’s one a hell of mouthful, right? A condition I might have, that I can’t even pronounce properly.
Before I start, I am not going to pretend I am a medical professional or a scientist. I do not have extensive knowledge on the Autonomic Nervous System or PoTs. This blog purpose is to give you an insight into the chronic illness.
I believe the best video to explain the condition is What is PoTs? (YouTube, 2017)
A brief explanation of the condition here based on reading (NHS-U.K, 2017) is; PoTs occurs when the autonomic nervous system which cannot function properly.
Autonomic nervous system?
” If this is the first time you’ve heard that, you are probably thinking what the hell is that”.
Let me break it down for you. The Autonomic nervous system controls everything your body is suppose to do without having to think about the action. For example, breathing, sweating, digesting food and drink etc.
When someone with PoTs sits or stands their heart rate increases to abnormal levels because the blood to their heart and brain decreases. Subsequently, this is likely to cause them faint or feel dizzy amongst other symptoms. Not everyone shares the same symptoms, and someone does not need every symptom to have PoTs.
“There are different types of PoTs, just to make things more confusing”.
There are Hypo PoTs and Hyper PoTs, which apparently even have their own sub-categories. I will admit, I still know very little about the different types but I will try to give you a very brief overview.
Hypo means something in the body is running low. For example, someone has low blood pressure or not enough blood or enough oxygen.Hyper on the other hand is the opposite and everything is rocking high in the body. For example, high blood potassium or sodium.
“The problem with PoTs, is you cannot see it – Around 85% of PoTs patients have been told their symptoms are only in their head (Dysautonomia International, 2014).
That is why it is not uncommon with invisible illnesses to live for years in pain undiagnosed or misdiagnosed. Even when patients symptoms are taken seriously, they are frequently misdiagnosed. Misdiagnoses occur because of a lack of awareness surrounding the condition – it was only officially recognised in 1993 (Stream,N.D).
PoTs is a bit like snapchat, both include filters. A Snapchat filter masks what someone truly looks like on the exterior. Meanwhile, in PoTS, skin is the filter that hides what is really going on in internally.
“I worry if I have PoTs – not about the illness itself, but how others will perceive it”.
I think it is cruel that skin can make someone appear perfectly healthy, when they are really fighting an uphill battle. I have already experienced discrimination due to my EDS and I fear this could happened again if I become diagnosed with PoTs.
“My journey for a PoTs investigation began when I was diagnosed with Ehlers- Danlos syndrome III (EDS)”.
I was asked that famous question, “What symptoms do you have?” I took a deep breath and reeled of my list of symptoms. I stated in the past the following had happened;
- I can’t bear standing up without being in pain
- Chronic fatigue – I am always tired despite how long I sleep
- I had episodes of fainting and a history of low blood pressure
- I felt better laying down in dark rooms
- I experience regular headaches and stomach pains and…
- I can hear sounds others can’t.
Hearing things others can’t…
I feared being honest would sound like Harry in the Chamber of Secrets when he was told to follow the spiders and I would be rapidly carted off to a mental hospital. I didn’t know which was more alarming.
The fact I had been honest or that the doctor look back at me like this was normal. I quickly realised to her this was normal for an EDS or PoTs patient. The doctor explained to me that people with PoTs are more sensitive to sounds and experience the other symptoms I listed.
The rheumatologist explained what PoTs was, stated that it is common for people with EDS to have it and recommended I went for an investigation. I agreed and the process was underway.
To find out what happened next…
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COMING SOON: POTS: Part 2 -Referral to Investigation
Over to You
I would love to hear from you!
Whether you have found this post useful, know someone who has experienced PoTs like symptoms or has a diagnosis.
I hope you have a good day,
Dysautonomia International (2014). Dysautonomia International: 10 Facts Doctors Should Know About POTS. [Online] Available at: http://www.dysautonomiainternational.org/page.php?ID=180 [Accessed 22 Aug. 2017].
NHS-U.K. (2017). Postural tachycardia syndrome (PoTs) – NHS Choices. [Online] Available at: http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx [Accessed 22 Aug. 2017].
Stream, C. (N.D). [Online] PoTS UK. Available at: http://www.potsuk.org/gp_guide [Accessed 22 Aug. 2017].
What is PoTs? – YouTube. (2017). Dysautonomia International 2016. [Online] Available at: https://www.youtube.com/watch?v=ch6ipV3M4yo [Accessed 22 Aug. 2017].