"Postural orthostatic tachycardia syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. It typically causes dizziness, fainting and other symptoms." - NHS UK
PoTS symptoms can include: dizziness or light-headedness or presyncope (almost fainting), syncope (fainting or blackouts, palpitations, headaches, tiredness or weakness, brain fog, shakiness or tremulousness, shortness of breath, chest pain, excessive sweating, gut problems, poor sleep, visual problems, bladder problems.
Growing up, doctors have dismissed many of the above symptoms when I've presented with them, and assuming the "doctor are always right", I did too.
However, as I've gotten older, these symptoms have persisted. It was a nurse colleague of mine who first suggested PoTS to me. Having spoken to others with the condition and researched the symptoms I started to question whether this could be the cause of so many of my problems. So I decided to mention PoTS to my GP, (which he then Googled in front of me). He confirmed I fit the diagnosis, but said the condition was not "life threatening" and left it at that.
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| National Hospital for Neurology and Neurosurgery |
When I happened to see a different doctor for a prescription renewal, she questioned how I was getting on and decided to refer me to a cardiologist for my continued palpitations and high heart rate. They then referred me to the Autonomic Unit at the National Hospital for Neurology and Neurosurgery when an ECG and echo cardiogram came back normal.
I was seen by a consultant in March, who requested I take part in autonomic tests. Although frustrated with the continued wait for answers, (I was told that the wait for tests was 10 months) it was such a relief to talk to a consultant who not only believed me, but who understood how debilitating my symptoms were.
A couple of weeks ago now, I was phoned for a last minute cancellation for the tests!
Day 1
As a Londoner, I had to commute daily to the hospital (those out of area are booked as in-patients). So after a four-hour fast, I headed to to Autonomic Unit for 9am for screening autonomic function tests and a prolonged tilt table test.
On arrival I was attached to a blood pressure cuff, an ECG and a finger cuff. I had to take part in a number of exercises which monitored my reactions - such as breathing exercises, a pressure test, an ice test to see how I react to cold, a maths test to see how I react to pressure. I then had a cannula inserted for bloods to be taken before and during the tilt test.
Lying down, once my heart rate and blood pressure had stabilised, my blood was taken and the bed was tilted 60°. I felt dizzy, light headed and faint straight away.
Before leaving, I was fitted with a 24-hour ambulatory blood pressure and heart monitor. Recording every 20 minutes throughout the day, and every hour overnight (between 11pm and 8am), I was given a diary to note down the times of the recordings, along with additional exercises I needed to perform and document - such as after lying, sitting and standing for certain periods of time, after climbing stairs and after eating.
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| 24 hour blood pressure monitor |
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| Diary |
Day 2
After another 4 hour fast, and with a pretty sore arm from the repeated blood pressure readings, I headed back to the Autonomic Unit for round 2 of tests - the liquid food challenge.
Like day 1, I was strapped to a tilt table, and my heart rate and blood pressure were monitored both lying down and upright. I was then given a milky drink, and again monitored both lying down (for 45 minutes) and then upright. This was the least intensive test, but I still left the department feeling pretty weak, worn out and with the beginnings of a migraine.
Day 3
My third and final day consisted of a modified exercise test. Baseline lying, sitting and standing readings were taken. Then, lying down, my feet were strapped to some pedals. I was asked to pedal for 9 minutes, with the intensity increasing every 3 minutes. I was asked to maintain a certain pace throughout. I was then monitored standing immediately afterwards (which I found pretty difficult).
Results
I was discussed at the Autonomic MDT by the clinicians who saw me, and my results were consistant with Postural Tachycardia Syndrome (PoTS) and autonomic mediated syncope (AMS).
I've been booked a telephone consultation to go over the results in more detail in the next few weeks, and will be invited to a Management Clinic to help me finally get to grips with my symptoms.
If you have any questions about the tests, or if you've been diagnosed with PoTS and have any wisdom to share then please don't hesitate to get in touch! Sarah x
Photo by Annie Spratt on Unsplash
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