STARS Patient Information
It all started in 1994. I was 20 years old and studying for my Masters in Art History. I had always been a healthy happy person with a positive outlook on life and very down to earth. I am Dutch and grew up near the west coast of The Netherlands. During a two week study trip to Florence I suddenly felt a wave of nausea, shakiness and dizziness come over me. An Italian doctor was called in who told me dryly I should just eat some more meat.
Back home I went straight to my GP who did not know the cause. A consultant who did a range of tests found nothing. More specialists were found, but they advised there was nothing wrong. Some specialists were kind and apologetic, others told me I must have been imagining things or perhaps I was simply overtired or anxious. I had never had an anxious bone in my body but I was starting to get really worried.
My dizziness was getting worse and I felt exhausted all the time. I also suffered from muscle pains, palpitations, and nausea. Regularly I would have an ‘episode’ where I felt as I was about to pass out, but I did not. Instead I had all the before mentioned symptoms, impaired vision, severe shaking, sweating. Basically my whole body would go into a total ‘red alert’, for no apparent reason. I could not move and struggled to talk, but was still conscious. It was very frightening. An episode would pass, but it would take a couple of days to stabilize completely, by which time the next episode would present itself.
My new GP did not have a clue and was not very subtle about it. He simply did not believe me and thought I was over-anxious or depressed. Many, many months later I had by now tried all the usual medical paths. I had seen every consultant, but no doctor could help and I was exhausted, and felt terrible. My university studies had slowed right down. I felt desperate and confused and scared that I had something serious and chronic. I grieved my past active life and felt depressed about not knowing what was going on and not being able to get help. I decided to stop my studies to not waste time and money. But I could not work either so had to top up my bank loan to make ends meet.
Slowly I realized that even though I might have something chronic and serious I could not stay in bed for the rest of my life. I dived into the path of alternative medicine and tried out various diagnosis (ME, Hypoglycemia) and treatments such as acupuncture, homeopathy, and many other methods. As the down-to-earth person that I am, I struggled believing in quite a few of these, and in the end none of it did anything for me.
Over the years I picked myself up, and made use of the good days; I finished my Masters at university and I was enthusiastic to continue an academic career and decided to go on for a PhD. The flexible hours would suit me well as there was no way I could work from 9-5 every day in a ‘normal’ job. I had regular episodes, sometimes in public, sometimes at home. During my research I travelled to England a lot and met my English future husband. I moved to England, and we now have 2 children. Pregnancy and labour was hard and I once fainted during my second pregnancy (dangerously at the top of the stairs holding my youngest son, but thankfully we didn’t fall down) but still no doctor could find anything wrong with me.
Over the years I have folded and kneaded my life around my illness. No, I could not work full time or regularly, no, I could not commit to regular appointments, I could not go clubbing or shopping too long, I hate hot weather, and I regularly had to call on my supportive husband to come home and scrape me off the pavement or take over the household when I was feeling ill. There were a lot of off-days, a lot of scares (and what I now know is called pre-syncope symptoms), but we managed together. As long as I lived like a plant I felt ok. So I tried to moderate the things I did and find a balance between plant-life and fun. Slowly we found the balance. I slept with 3 pillows, my family got used to me getting up in the middle of the night when I felt bad, eating little and very often, or having an afternoon nap sitting on the sofa. We still had no idea what was the matter with me.
In 2007 I had a particularly bad period. I had severe ‘episodes’. It scared me enormously and I decided to try the GP. I had not seen a GP or any doctor about this since my disappointing days in The Netherlands so many years ago. My GP surprised me by taking me seriously. She referred me to a neurologist. My condition got so bad that I was admitted to hospital for a few days while the neurologist tried to gather all possible tests. The neurologist concluded he could not find anything wrong with me, except a raised heart rate and blood pressure at times (he arranged a tilt-table test but had never heard of postural tachycardia (PoTS), nor had I). Although he did not know the cause of the high heart rate, he suggested I try beta blockers. Once I got used to these I stabilized a bit: Beta blockers took the sharp edges off my condition. An episode would not develop into a full-blown episode anymore. A wave of dizziness would remain a wave of dizziness. Slowly I could rely on myself again. I still feel episodes and I still wake up at night with dizziness and nausea but they are a lot less severe than before.
In 2010 I decided to ‘try’ another specialist again. I was ready for battle, defense, and disappointment, but he said: “Before I tell you what you have, I need to ask you a few questions.” I nearly fell off my chair. Would this man actually know what the matter is with me? He told me I have vasovagal syncope (or perhaps PoTS) and referred me to the charity STARS. I spent a good while in the car park afterwards, trying to get to grips with what just happened. After 16 years of finding a brick wall of misunderstanding, unwillingness to understand, ignorance and helplessness, it seemed (after reading up on the internet) he had found the answer. My reading on the topic made me lean towards PoTS as the diagnosis but it seemed from the STARS website that it was all part of the same family.
A year went on and I decided to see another specialist who refined my diagnosis to PoTS. And I agree. I cannot beginto tell you how amazing it feels to finally know what is wrong with me, to find there are others like me and that there is even a patient organization!! I am now (still on beta blockers) functional and happy, have friends and do what I love, but it has meant making compromises and accepting my limits. Many things are still a no-go for me but I won’t let it bother me. By now I know what I can take on and what is too much. Although I am not working as an academic I have found new love in painting and being an artist is something I can combine with my health, my beautiful children, my life. My career as an artist is growing and I am excited about the future. I have been lucky in having my work included in some prestigious exhibitions and I find new energy in pushing my work forward.
Recently I have created a painting in which I tried to express how it feels to be dizzy all the time. The painting has a surrealist, ‘Alice-in-Wonderland’ feel to it. The Blue Dress is now also available as prints and all money raised by selling the prints will go to STARS and POTS UK. If only I had known about these charities when I first got ill! I hope their existence means nobody will have to go through such a long period without diagnosis as I had to. I hope this story was not too long and remotely informative for you all and perhaps helpful for new patients.
Sophie, South Gloucestershire