Saturday, 25 November 2017

I’ve got PoTS...

So for the past 3 years I’ve been suffering with symptoms of what I now know is PoTS. PoTS or postural orthostatic tachycardia syndrome is a form of dysautonomia meaning my autonomic nervous system doesn’t work properly. Your autonomic nervous system (ANS) controls vital functions in the body such as: heart rate, breathing, blood pressure and digestion. So in people who have PoTS we experience symptoms such as: low blood pressure, high heart rates, nausea, fainting, pre-syncope, headaches, dizziness, heat intolerance, sickness, food intolerances, fatigue and shortness of breath to just name a few!


PoTS has changed my life and can make me really poorly. It all started 3 years go, I was in a physio session I stood up from the doing a leg exercise and I nearly fainted. Each week at physio I was finding myself being sick, having severe dizziness and nearly fainting. It got to the point where my physio (who was rubbish anyways) said he could no longer treat me.

By now I was feeling dizzy every time I stood up, I often found myself out of breath from the simplest of tasks. I went to my GP who basically told me it was anxiety. At this time a lot was going on regarding my joints so we left it. It improved for about 6 months I was still getting dizzy but I think I was just used to it. One day though we bought it up to my rheumatologist and she said that it was possibly PoTS and to go back to my GP and get a referral to a cardiologist.

By this time it had all gotten bad again! I  got a referral and the tests began... ECG, Echo scan, 24 hour ECG, blood pressure monitoring and blood tests. In the end my ECGs showed tachycardia and I had low blood pressure on standing. My local cardiologist didn’t have a clue what was going on (probably as there’s barley any awareness) but referred me to a more specialist cardiologist and for a tilt table test.

The tilt table test was by far the worst thing I have ever experienced, I can’t explain how horrible it was. (A tilt table test is where you are on a bed and they tilt you to a standing position. The test lasts on average 30 mins) I got a severe head ache, expirenced heart palpitations, my blood pressure dropped really low, I was over come with nausea, my vision was blurry and I lost the ability to control my body temperature (one minute I was freezing the next sweating). I remember being strapped into the bed with my eyes closed thinking I was going to die. I am not even over exaggerating I felt so poorly. Once the test was over they lay you back down... I could barley speak, I lay there with my eyes closed trying to catch my breath. They put fans on me and gave me some water through a straw. I slowly came round and I continued to lie there until my heart rate came back down and my blood pressure back up. It was definitely one of the worst medical tests I’ve ever done but it gave me the diagnosis of PoTS on the 3/11/17. 
PoTS has changed my life and lifestyle. I have to be careful every time I stand. Drink so much water and eat a lot of salt. There are also medications you can take to control PoTS but currently I’m trying to avoid that!

 My PoTS is linked to me having Hypermobility Syndrome but others can get it for numerous reasons. There is very little awareness for PoTS and on average it takes a person 4 years to get diagnosed I was lucky enough for it to be only 3 years. If you could all please share this post to raise awareness it would be very much appreciated! 

Love Niamh xxx

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