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Living with Dysautonomia



I've written several articles about mental health in an attempt to raise awareness and understanding but I recently realised that, as important as that is, I haven't really written much about my physical health problems. The two conditions I have I hadn't even heard of until I was diagnosed with them so writing this to make people aware that these conditions do exist! It's been nearly a year since I started struggling with these conditions so thought it was about time I try and articulate the experience.

I suffer with a condition called Neurocardiogenic Syncope and also POTS (Postural Orthostatic Tachycardia Syndrome). What this basically means is that my autonomic nervous system is a bit faulty - this is the one which regulates all the things your body should do automatically - heart rate, blood pressure, body temperature etc.

During the day as we move around, digest food etc this system should make adjustments to deal with these things but with this condition it struggles to do this. Not enough blood gets to the heart and brain and this can cause problems. So something as simple as standing up causes my heart to beat faster by about 20-30bpm - it also means I struggle with energy and can sometimes feel very weak. Dysautonomia is the umbrella term for these conditions that affect the autonomic nervous system in this way.

These conditions first manifested themselves last year in the form of blackouts. The first time I blacked out my heart was going 197bpm and I was taken into hospital and referred to cardiology. I hoped this was a one off but a few weeks later this happened again, and then a week later. This built up in frequency until I was passing out everyday if not more.

I was told by some doctors that this is just something which happens to young women and it would pass as I got older which always angered me - I'd never known anyone have this problem and also it was so dismissive. I was in my final year at university and this had taken over my life - even though there was the assurance it would pass it still felt so hopeless as I just didn't see how I could live with this for years. I couldn't accept that would be my life.

As much as all of this quickly became very normal where losing consciousness was not anything shocking but just something that happened - it was all pretty scary to start with. It took me a few months to get to see a cardiologist but before that we were dealing with it without much information or support. I was reassured that fainting in itself is not dangerous and the main risk was of injuring myself in the process - which did happen a few times: nasty bruises on my arms, falling on the stairs and injuring my coccyx and some bumps to the head too.

What was hardest though was how this illness took over my life. I'd gone back to uni after the summer ready to throw myself into my final year and instead found myself disabled by these conditions. I was in and out of hospital to the point I was there more than in any sort of social situation and it was just frustrating as nothing would ever really come of it - I just had to get checked out.

Crucially though these illnesses took away my independence. When I was passing out at least daily, I couldn't really go anywhere by myself. I had to get taxis rather than public transport if I did have to get somewhere alone. Even going down the stairs in my house my friends would be watching me.

Each time you faint it knocks you out for a while so you can feel washed out. At first after a few days I would be back to my normal self but once I got to the point of passing out so frequently I never had this time to recover. I was 21 but walking like a ninety year old, not to mention looking pale and tired too. I missed out on social occasions, had to be signed off sick from work and missed performances at university through having bad episodes and being in and out of hospital. Doing my written work also became so much harder as I wasn't able to concentrate - my work suffered as a result and my grades dropped.

I also had to deal with the embarrassment of passing out all the time - people in my class got used to it but when people would first see it it would be quite scary for them, especially if it was a bad one. Often I would come round straight away but sometimes it would take a few minutes and my eyelids would be flickering so it almost looked like I was having a seizure. I hated people seeing me like that.

After seeing a cardiologist and having some interesting medical tests I was put on two types of medication: Midodrine and Fludrocortisone. These didn't help at first but over time I started fainting less. At one point I had about a seven week break with no fainting but then it all started back up again which was frustrating as it got my hopes up. Now I haven't fainted in about 3 weeks and before that it not since July. However I still suffer in other ways.

In June I went on a family holiday to Turkey and we thought the heat might aggravate symptoms but equally it would be good to have a break and I'd just have to keep hydrated. I fainted several times that week but also was incredibly weak. Where most people get a tan on holiday I was getting paler and paler and my parents were getting quite concerned.

When we got back to the happily milder climates of England I didn't faint so much but even with time to rest and recuperate I was very weak. I would walk five minutes to the high street and wonder how I'd get back as my heart would be racing and my legs so heavy. Through doing research and also talking to my cardiologist I came to realise this was part of the POTS. So even with four tablets a day and keeping hydrated I still struggle.

The positive side of all this is that I got through it and can't believe how far I've come. Not that long ago I could barely go anywhere by myself and I wondered if that would be my life for the next few years. Now, I've been working full time in a theatre as an Arts Marketing Trainee for four weeks and loving it. I have to get up early and commute 40 minutes on the train to work each way not to mention doing a full day's work - but I do it.

I guess when I was fainting it was a very visible illness - even when I wasn't on the floor because of it I didn't look well and it affected the way I walked too. Now no one would know about all this if I didn't tell them and so it's become this invisible illness. Over the past few weeks I've had such heavy, painful legs I've been in tears, awful headaches, nausea most mornings (no, I'm not pregnant), a racing heart for no reason at all and also feelings of physical weakness. All that aside (and I feel like my body might be getting a little stronger maybe - fingers crossed) I feel so happy and blessed that I am managing to do this job and am enjoying it. Not only that but I have my life back!

It's almost surreal to look back on the last year, how different my life was and now the idea of losing consciousness so much just seems bizarre. I guess it is bizarre but I think what makes it frightening is also how little people know about it. Even a lot of doctors are uninformed about this condition as it was only in the 80s that it was first really understood.

If I'd been told I had diabetes there'd be any number of people I could talk to about it or pamphlets to read - I'd know it was serious but manageable whereas with Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome: they just sound scary! So this is why I'm glad that Dysautonomia Awareness month is happening to help people that have this condition but also to make those aware who have no idea it even exists.

Also just to clear up a common misunderstanding -  people don't just faint because they are stressed. Stress can make symptoms worse but the condition is caused by a malfunctioning autonomic nervous system. It's a very real physical problem.

So if you have palpitations or suffer with blackouts - go to the doctors and get it checked out. It's easy to think it's probably nothing and it may well be, but it's better to make sure there isn't an underlying reason for this. The STARS charity website is a great resource if you do suffer with these problems and also includes a check list to take to your doctor so you can give them a full picture of what is happening.

I'd be interested to hear of anyone else's experiences with these conditions so leave a comment if you have had any similar experiences. I'll also post a few other articles this month about how I came to be diagnosed  and how to cope with this condition so subscribe if you want to hear more :)

See also: Living with Dysautonomia: How to Cope

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