James

My name is James, I’m 38 (aaargh, where did my 30’s go?!) and I live on the South Coast of England.

I developed what I now know to be PoTS at the beginning of 2018. I had just started a new job, in a different part of the country and within weeks came down with Glandular Fever (EBV), it was brutal! Within a year I couldn’t fight the fatigue, insomnia and daily migraines any longer and had to stop working. I used to have a decent social life, would travel a lot and generally never thought my health would hold me back, that was normally due to lack of money! I suddenly entered the world of chronic health problems and the NHS. It was a shock to the system and a radical change to my life as I had rarely even had a cold before.

At first, I had a helpful GP, but after they did all the basic blood tests (which of course all came back fine!) they wrote me off as being depressed and having ME/CFS. I never really had the symptoms of depression, and I certainly didn’t meet the criteria for ME/CFS.

I read a statistic somewhere that stated something like “if you don’t find a diagnosis within 5 years of symptoms starting the chances of finding one are very slim”. Despite spending countless hours, over many years, researching illnesses and diseases that could possibly cause my symptoms, I never once came across PoTS. This is so frustrating considering my symptoms are the core PoTS symptoms. It’s even more frustrating when I looked back at my GP notes and see that they noted high heart rate on a number of occasions and put it down to “anxiety”, when I was going about a specific issue such as tonsilitis or a headache! I never complained about anxiety or anxiety symptoms.

Fast forward to 2022, I had one year left before I hit the 5-year point when getting a diagnosis would become, statistically much more difficult. I got a recommendation for a consultant at Harley Street who is informally known to be the ‘Sherlock Holmes of undiagnosed illnesses.’ At that first consultation, he gave me a working diagnosis of PoTS. He was shocked that my standing heart rate was persistent at 160bpm, and I don’t think he believed me when I said I could not feel my heart racing. Within a few months, a cardiologist confirmed the diagnosis.

My first medication (which I am still on) was Ivabradine and was a game-changer. Within 3 days of starting it, I could feel the veil of exhaustion and fatigue lifting, it was incredible! I no longer needed to lie down all the time and I would say it improved my symptoms by 70%. Since then, I have tried, and am still on, other medications (all the usual ones), but it is definitely the Ivabradine that does the hard lifting.

For me, the biggest challenge with regards to managing PoTS, is my energy but I find regular walks (sometimes with my doggo) help. This would not have been possible without pharmacological treatment and I am lucky that I have access to a private specialist and an NHS GP who is happy to take on the prescribing.

I sometimes feel angry that I “lost” so many years, when I had a condition that could have been easily diagnosed by one knowledgeable doctor during my first visit, instead of seeing countless doctors before who couldn’t help, but I now wonder how many of them even knew about PoTS? I had never heard of it myself and spent years researching chronic illnesses. It’s frustrating because I know how much medication can help, but I got there in the end, and bearing in mind the average time to diagnosis is said to be around 7 years, I guess I didn’t do too badly. I understand that the majority of PoTS patients are female, although I have to say I know more men with PoTS than women, albeit I only know one other!

I would like to raise awareness of PoTS so that people who have undiagnosed symptoms can look to see if their symptoms might match. If I had seen even one mention of PoTS online during my research, I would have pestered my GP to look into it for sure. It’s for this reason that I will be doing the Walk and Talk for PoTS fundraising walk in May 2024 and I am looking forward to getting PoTS out there and who knows, maybe helping somebody get a diagnosis.