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rachael's story

"I finally got some answers!"

It all began in 2015 for me, POTS-wise. I’d just moved house and was going through a stressful time, feeling ill all the time and having still not properly recovered from several operations in recent years - three on my sinuses and one to remove a severely impacted wisdom tooth. I constantly had the lurgy and it took ages to fight it off, if it felt like I had at all. 


One morning after a particularly stressful day at work the day before, I ran for my bus.. I was really short of breath and my chest was tight. I took my asthma inhaler and it didn't help much. Then I got strong chest pains and palpitations. I continued on my journey to work. I had several meetings that morning and had the same chest pain and palpitations in the first meeting.


In the second meeting, I started to feel dizzy, with pains down my left arm and leg. When I went to stand up after the meeting, my legs were like jelly and I couldn’t stand. I called NHS 111 and they sent an ambulance to take me to A&E. They did an ECG and thought I had arrhythmia, but these results weren't passed on in A&E. As a result, the consultant thought it was indigestion and heartburn which I knew very well that it was not. I was then discharged with antibiotics and told I had yet another infection and just to rest. 

"I have probably had this condition for most of my life"


The next morning, it happened again. I couldn’t walk from my bedroom to the bathroom. I went to the local A&E and after lots of tests they referred me to a non-urgent cardiology clinic. My GP recommended a cardiologist and I was lucky enough to see him quickly on private healthcare. We tried various heart monitors over 24 hours and a week and then he referred me for a Tilt Table Test. Then, I finally got some answers! 


From our discussions, it seems that I have probably had this condition for most of my life after various childhood and teenage illnesses and accidents - quite a revelation! I had always put it down to other things: head injuries, migraines, chest infections, tonsillitis, general clumsiness... I had glandular fever and tonsillitis at the same time when at university and ended up with severe post-viral fatigue and an ongoing illness that at the time was diagnosed as ME, IBS, problems with my ears, and so on....


So many of the symptoms experienced then are the same as now, so it makes sense that I have had some form of autonomic dysfunction for a long time. 

After the Tilt Table Test, I was diagnosed with Vasovagal Syncope, however, when the chest pains and palpitations got worse, my cardiologist suggested I was suffering from POTS as well as the syncope issues and prescribed Bisoprolol, which has really helped ease those symptoms. 


I revamped my diet and lifestyle following advice from online support groups, STARS and POTS UK, and found it an enormous help.









"I revamped my diet and lifestyle"


 A year ago, things seemed to be getting worse and my hands and wrists started swelling noticeably - I was in a lot of pain. 


My cardiologist referred me to a rheumatologist, and after many more tests, I found out I have inflammatory arthritis, which seems to be the underlying cause for the syncope and POTS. He also pointed out signs of EDS and fibromyalgia, saying that all the symptoms and different conditions I experience are very closely interconnected.


I find knowing what I’m dealing with and working hard to manage the condition really helps. I'm lucky in that I don't actually faint - I get pre-syncope, nausea, vomiting, dizziness, general wobbliness  and migraines that act as my warning signs.


The medication for arthritis and nature of the auto immune condition mean that I catch everything that's going round, and a simple cold can really knock me for six! 

I work full time and my employers are fantastic and very accommodating of any adjustments I need to make. 


Yes, it gets frustrating and upsetting not being able to do things and feeling ill a lot of the time. Sometimes it does get to me, but I stay positive as I count myself lucky to still be able to do as much as I can when I am feeling up to it. I have to work hard not to push myself too hard, but am grateful and thankful that it could be a lot worse.

- Rachael

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