POTS Appointment #1

Last Monday I had my first appointment with my new Cardiologist to discuss the possibility of Postural Orthostatic Tachycardia Syndrome. He seemed really nice and made me feel listened to. Something I was nervous of since I was the one who suggested this new diagnosis and half expected to be shushed and treated like a hypochondriac. Happily, this didn't happen! We went over the aforementioned encyclopedia of medical history, then I had the world's speediest ECG and had a 24 hour heart monitor put on to track my heart for 7 days.

I've just handed said heart monitor back, it hasn't exactly been the most fun week of my life. The timing could arguably have been better, heatwave + sticky electrodes = not so much fun. It has been a memorable week and quite possibly the itchiest week of my life. I now got rashes and spots from a reaction to the electrodes (lovely I know). However, hopefully this is the first sticky, itchy step down the road to finding out what is actually going on in my body (which after 7 years would be nice to know).

I don't know that much about Postural Orthostatic Tachycardia Syndrome (nicknamed POTS), here's what POTS uk has to say about it:

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.

All in all not the world's most fun thing, but not the worst. I'm now back to relying on my wheelchair for travelling any distance and one crutch to go shorter distances, around the house I don't use any aids but I do just move from seat to seat so there's not really a need. 

If you want to read more about POTS  I'll link their website here. 

The next steps are to wait for the results of the heart monitor, then I need to have an ultrasound of my heart to check it pumps properly and there isn't anything else wrong. After this I may well need to have a tilt table test, I'm really hoping that they'll have enough data from the heart scan and monitor so I don't have to do the tilt table test. Sometime however you just have to grin and bear it to reach a diagnosis.