In July 2008 I started to feel very strange. Not the kind of strange that I was getting a cold, but something I couldn’t explain. It was like my heart was beating in a strange rhythm, but I put it down to the heat, it was summer after all. A few weeks later I wasn’t able to stand for long periods of time without starting to black out. I still told myself I was just dehydrated or something and then one day, after taking a nice hot bath I felt worse. I couldn’t stand up, everything was starting to spin around me and I lost my hearing for a few minutes, I thought ‘oh no not again’. The same feeling I’d had before, but this time my heart felt like it was going to leap out of my chest, it was going so fast! I had to lie on the cold bathroom floor, completely naked and shaking having no idea what to do. I eventually was able to stand, after about 15 minutes and pulled myself along to my room and lay on my bed. I called the doctor and made an appointment for the next day.
I explained what had happened and he said that although my blood pressure was a bit low, it was common to have this at my age and it could be down to stress and anxiety. Neither of these things had ever been a problem for me before, so I didn’t quite believe him. He said I’d ‘grow out of it’ and left it at that. A week later and I was no better. I couldn’t climb the stairs without feeling like I was going to collapse and I was so hot all the time. I went back to see the doctor and this time he referred me to see a Cardiologist at my local hospital. The cardiologist did ECGs, a 24-hour halter monitor test, 24-hour urine sample test and countless blood tests. He mentioned something called IST (Inappropriate Sinus Tachycardia) and did an echo of my heart. He concluded that there was nothing wrong with me and although I had an occasionally irregular heartbeat, I’d grow out of it.
I left the hospital in tears, I knew there was something wrong and the doctor was telling me there wasn’t, I didn’t know what to do. I went back to the GP and he started me on some calcium channel blockers, which I wasn’t sure why I was taking them, but by this point would try anything to feel better. I moved house and changed GP and a few months later I was feeling more tired and I kept getting dizzy spells and a feeling like I wasn’t present, it was like brain fog. So, I looked up IST on the internet, having avoided googling my symptoms up until now, for fear of telling myself I was dying of some incurable disease!
There was a link on a forum from someone who had been through the same problem as me, with having lots of heart tests, but to be told there was nothing wrong. There was a linkto a website (dinet.org) and I followed it through. Only a few weeks later I was having autonomic testing, including the tilt table test and it was confirmed I had POTS. The specialist also said he thought I had Ehlers Danlos Syndrome Type III, but would refer me to see a specialist at another hospital for that.
I saw an EDS specialist a month later and it was confirmed I also had EDS type III. After 3 months, the salt and water hadn’t worked. Although they hadn’t made me worse and I was to keep on with this, my specialist put me on Midodrine on a very low dose; this has slowly been increased over the last year and really does help. It is a vasoconstrictor and helps to prevent blood pooling in my legs and therefore raises my blood pressure slightly. I also have a blood pressure monitor at home to keep a check on what my body is doing, in recent months, I’ve also been diagnosed with Costochondritis and Gastro paresis, although they are mainly related to EDS, a lot of people I know with POTS, also have these conditions. I also have had IBS for 5 years, but again, this seems to have been caused by POTS. A lot of things have since ‘clicked’ having done a lot of research about POTS, for example; several years ago I suddenly became very motion sick and travelling as a passenger in a car was torture. I’d also feel sick a lot for no reason and travelling by plane anywhere would leave me with a bad stomach and exhaustion for days. I’ve only been admitted to hospital once so far, with POTS and that was not a great experience.
This is why we need to inform all hospital about POTS and Dysautonomia awareness. I get bad episodes every few months, especially around the ‘time of the month’ but also if I’ve had something done, such a dental surgery. I was in bed for a week after and my blood pressure dropped to 90/50, it was hell. My symptoms of POTS are: Dizziness, nausea, heat intolerance, and feeling tired, palpitations, exercise intolerance, migraines, dehydration, joint pain, brain fog and fatigue.
I went on the internet as soon as I got home and looked up POTS. There wasn’t much around, but a Face book group called ‘POTS and Dysautonomia awareness’ showed up. I found a lot more people than I was expecting who also had POTS, or like me had just been diagnosed. Some were still undiagnosed. I met a few people from the UK on there and they had seen the specialist I had been diagnosed by and we swappedstories and so I finallyfelt a bit more human again.
I made an appointment and about 2 weeks later, he was asking questions, examining me and said ‘I do think you have some form of POTS, I want to get some autonomic testing done to make sure I’m right’. I couldn’t believe it, at last! I was so emotional as I finally had someone telling me I had been right all along! Even by this point my family and friends mostly had thought I was a hypochondriac or had stress as well! ,
I then contacted the specialist directly, by e-mail and he’d said this was a common occurrence that GPs wouldn’t listen, but although he couldn’t see my on the NHS without a referral, he would see my privately. I checked out the ‘physician listing’ page and found a specialist doctor in the UK. I approached my new GP, explaining my history and the details of the doctor I had found and asked to be referred. I was so shocked by the reaction, as she said she wouldn’t refer me as the Cardiologist had said I was fine and suggested I get behavioural therapy and try anti-depressants! Basically she was saying I was losing the plot! To my surprise and relief the website had a condition listed called POTS andalmost everysingle symptom I’d experience in the last year was there! Even things I had experienced a few years before and put it down to hormones!