STARS Patient Information

Dawn's story

I faint; it’s a thing

It first happened nearly five years ago. I was taking a shower when I started to feel a bit "wobbly". Suddenly I had the rather alarming realisation I was about to faint and, before I knew it, I had passed out. Coming round a few seconds later, I concluded that perhaps taking a skin-blisteringly hot shower after not eating for a day because of a stomach bug wasn’t as good an idea as I had originally thought and forgot all about it.

Until I fainted again three months later...

This time, I fainted half way through an eight-mile walk (if planning on doing this yourself, make sure you don't have to walk another four miles to the nearest train station afterwards...). A little bit concerned, but not desperately worried, I went to the doctors to just to "get myself checked out". Blood tests showed that apart from having slightly low iron levels, I had nothing wrong with me. So I just resolved to eat more spinach and again thought no more about it. 

Until I fainted again a month later, and then again and again... Somewhat more concerned, I went back to the doctors and found myself being referred to see to a cardiologist to check that there was nothing up with my heart. Fainting, or "syncope" to give it its medical term, is caused by a “temporary reduction in blood flow to the brain” (NHS Choices – Fainting) and the heart beating too fast, beating too slow, or generally not functioning as it should can be a cause of this reduction. Therefore, it’s very important to check that there’s nothing wrong with the heart because if there is and it goes unchecked, the consequences can be fatal.

In my case, thankfully, they couldn’t find anything – my heart rhythm was normal and it was functioning normally. But, the problem was that I was still fainting and I actually found myself feeling disappointed that my heart was OK. Having something wrong and not knowing the cause is something akin to torture. I nearly drove myself insane Googling “fainting”, “syncope”, and other similar terms trying to find an answer. I read and re-read descriptions of conditions that were associated with fainting to see if I could identify with any of them, regularly diagnosing myself with scary-sounding genetic conditions that were medically impossible for me to have given that no-one else in my family had them.

I’ve had doctors tell me that I “shouldn’t worry” because whatever was causing me to faint wasn’t going to kill me. But believe me when you have absolutely no idea why you keep finding yourself on the floor, not able to speak or move while complete strangers attempt to put you in the recovery position, you worry.

Last year, after nearly four years of being told nothing was wrong, I began to accept what had always been at the back of mind and what many friends and family had suggested—that the fainting didn’t have a physical cause and was actually a reaction to stress. A year before I started fainting, two family members died within months of each other, and, not surprisingly, this had left me completely devastated and still had a major affect on me. Plus, I am not exactly known for being a laid-back type.

I discovered there was a thing called “psychogenic blackouts”, which is when it looks like you’ve fainted but actually it’s more that your brain has “shut down” as a reaction to being under too much stress or anxiety (Syncope Trust and Reflex anoxic Seizures; psychogenic blackouts). Therefore, going against my leftie principles, I made a private medical appointment with a doctor who specialised in “syncope of unknown cause” about the possibility that I had psychogenic blackouts. This was a big step for me; it was hard to admit that it might be "me" doing this not my body. Taking a deep breath, I told the specialist “I think I have psychogenic blackouts” and his reaction was somewhat surprising – he laughed. 

It turns out that it takes, on average, seven years to establish a diagnosis of psychogenic blackout as you have to rule out all other causes of fainting first. Also, most people are very reluctant to accept it as a diagnosis and he told me that I would be first person with it he’d come across to suggest it themselves as a diagnosis (what can I say? I like to be unique).

As an alternative diagnosis, the specialist mentioned a condition called “postural tachycardia syndrome” or PoTS, which can be caused by your autonomic nervous system playing silly billies. The autonomic nervous system controls the essential systems of the body and when it doesn’t work properly, as in dysautonomia (Dysautonomia International, What is dysautonomia?), your body doesn’t always react the way it should (er, I think). So for example, in PoTs, you have a high heart rate when you stand up. As far as I understand it, you faint because your blood pressure doesn’t increase enough to help your body cope with the high heart rate. The specialist said he would send me for some tests to see if I had PoTs and/or dysautonomia (very kindly, suggesting I get myself referred to him on the NHS so that – not having medical insurance – I wouldn’t have to pay for the tests).

Lightbulb moment

When I got back from the appointment, I researched both PoTs/dysautonomia and it was an absolute revelation. Fainting is just one symptom of PoTs – in fact, most people with the condition don’t faint – other symptoms include insomnia, pooling or discolouration of the ankles/feet, loss of concentration, body temperature regulation issues, and fatigue (STARS, PoTS). Reading the list of symptoms, it hit me: the freaky aspects that I had always accepted as being part of “the magic that was me” might actually be a sign of a medical condition.

I’ve always had blotchy lower legs, so much so – out of respect to the general public – I don’t show off my bare legs unless it’s blisteringly hot. I have always been “not much good at sleeping”; once asleep, I stay asleep but it just takes me a long time to get there. Plus, once cold, I struggle to get warm no matter how many layers I am wearing.

However, the biggest red flags were “fatigue” and “poor concentration”. I was vaguely aware that there might be a connection between the fainting and that I was starting to have episodes where I was very tired, but I had put it down to going bed late (because of my reluctance to spend lots of time lying awake in bed) and working long hours. The thing is, I didn’t just get “very tired”- I felt completely and utterly exhausted. So exhausted that sometimes, I didn’t feel capable of doing anything, not even reading a book or watching TV, and I often had to have a lie down just so I could re-energise to do something “taxing” like mop the kitchen floor.

As for the poor concentration, which sometimes seems to be called “brain fog” (PoTS & OI Recovery, Brain fog – not just another blonde moment), I often had episodes where I couldn't focus and struggled to work out what I needed to do even if it was something as simple as write an email. I also had episodes where I was talking and just could not get my words out. I knew what I wanted to stay but I just couldn't think of the words - Often, I just gave up trying to say anything at all and just stood there red-faced and embarrassed.

Diagnosis & next steps

As a result of the numerous tests that the specialist sent me for, I now know that I have episodes of a high heart rate. It may not actually be PoTs because people with PoTs have an increase in heart rate when they stand up whereas my heart rate is often high whether I am standing or not. It could be this thing called inappropriate sinus tachycardia (how the specialist didn’t say this without giving into the temptation to add “there is a time and a place for sinus tachycardia and this just isn’t one of those times” is beyond me), which can produce similar symptoms to PoTs. I still don’t know if my autonomic nervous system is up the creek as I am still waiting for the results of my autonomic function test, so time will tell on that one. 

The specialist has told me there isn’t a cure but drinking more fluid, eating more salt (both of which help keep the blood pressure up), and gradually increasing my exercise can help reduce my symptoms. He also told me that I drink a “fairly large amount of caffeine” (I was stupidly honest about how much caffeine I drink – a large coffee and a half a litre of diet coke each day – so it was a fair comment) and need to cut down.

Since seeing the specialist, I drink more water and I am trying to drink less caffeine – though, to be honest, I am not sure I would be able to get through the day without it. I have also attempted to increase my exercise levels but again, I am finding this a bit of a struggle. The problem with having a high rate, whatever the cause, is that exercise is a vicious circle: you don’t exercise because you are exhausted or because doing exercise always makes you feel worse (I have never, in my life, experienced the so-called high after exercise that gym bunnies waft on about it), so you become “de-conditioned” and even the slightest bit of exercise is difficult (because I’ve gradually stopped doing exercise over the last few years, walking up stairs can now cause me problems), which can make your symptoms worse. The key apparently is to gradually increase the amount of exercise you and to do exercise that does not involve standing (ie. swimming).

The last time I fainted was nearly three months ago, but I am no longer naive enough to believe that it’s gone away - I have had periods of not fainting in the past and think I am “cured”, only for it to start up again. But while I still have problems with feeling tired, I am hoping that by doing my best to follow the specialist’s advice, I’ll only faint now and again (rather than once a week as I was doing earlier this year) - especially, now that I've turned the down temperature in the shower (which no doubt pleases my flatmates as they no longer have to fear being scalded everytime they use the shower after me). 

Whatever happens in the future, I at least now have an inkling of what’s wrong and a better idea of how to manage it. And having an inkling, after four years of not having a clue, is good enough for me.

Read Dawn's blog about her attempts and failures to follow her doctor's advice!

Dawn, London


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