Yesterday, 25th October 2019 was the first annual #PotsAwarenessDay!
PoTS, Postural Orthostatic Tachycardia Syndrome also comes under the term Dysautonomia. PoTS is an abnormality of the functioning of the autonomic (involuntary) nervous system.
The autonomic nervous system is in charge of all our bodily functions that we don’t have to think about including: heart rate regulation, blood pressure regulation, digestion, bladder control, sweating and stress response.
A part of the autonomic nervous system is the sympathetic nervous system. This produces the ‘fight or flight’ response. When this occurs the chemical called norepinephrine is released. It can cause many symptoms including an increase in heart rate and blood pressure.
When someone with PoTS changes their postural movement i.e. goes from sitting to standing their heart rate increases excessively, usually by at least 30bpm.
When a ‘healthy’ persons stands up the blood vessels contract which causes their heart rate to increase slightly. This maintains the blood supply to the heart and brain. However, this doesn’t happen in the same way for a person with PoTS.
I was recently diagnosed with PoTS and in hindsight we realise that I have had PoTS for a number of years.
PoTS is classified as a Rare Disease however; the truth is that people go years or lifetimes without being diagnosed.
PoTS is not widely recognised by Doctors and some will tell you the condition does not exist despite the fact it is a very real condition and can be extremely debilitating. It can be incredibly difficult to impossible for some patients to get a diagnosis.
Not all PoTS patients experience the exact same symptoms. Symptoms can include: low blood pressure, high blood pressure, weakness, hot flushes, sweating, dizziness, black outs, fainting, brain fog, fatigue, nausea, headaches and more.
PoTS can also cause problems with digestion and bladder control.
Many people living with PoTS may need mobility aids to help improve their quality of life and ensure they are safe when going about their daily life. This can include: wheelchairs, rollators, walking sticks, perching stools, shower chairs and more.
PoTS symptoms can also be worsened by a variety of triggers: speed of postural change, after eating, dehydration, time of day, menstrual period, deconditioning or prolonged bed rest, alcohol, exercise, heat and more.
Personally I have found some of my PoTS symptoms mainly my black outs and how frequently I pass out to have reduced as we’ve entered into the colder months.
Some people with the condition find symptoms improve and become more manageable with life style changes and medication. Others live with a condition that isn’t well managed for years.
My symptoms are not well managed currently. I do what I can to help my PoTS and I do what my body needs of me (most of the time).
Any postural change tends to increase my heart rate excessively and often higher than the average ‘healthy’ person who has just run down the street. I find my PoTS infuriating at times even sitting sends my heart rate into a frenzy and often causes me to either black out or pass out. Interestingly only 30% of those with PoTS experience black outs.
I can be sitting in the same position for while i.e. sitting in the car and I will get a sudden ill feeling, I might be dizzy, experiencing pressure in my head or nausea and my heart rate will have risen.
I spend most of my time in a car with the seat reclined. I spend most of my time at home lying down on the sofa or on the floor and where possible I will have my legs up, to try to increase blood flow and reduce my symptoms.
PoTS can be a serious and debilitating condition. It can be extremely difficult to live with. It is also possible to lead a good life with PoTS, in whatever way is best for that individual.
If you’d like to know more about PoTS then I would recommend these two sites:
– PoTS UK
If you’re living with PoTS remember you’re not alone! There are many of us going through this so reach out to the chronic illness community. I don’t know what I would’ve done without such a wonderful community!