Reflex Anoxic Seizures: My Story
It was confirmed about two years ago that I suffer from both Reflex Anoxic Seizures and Reflex Syncope, it sounds really bad and kind of worse than what it is really so I’ll sum it up for you and explain what actually happens to me and my own personal story but this first from the STARS website.
"Reflex Anoxic Seizures (RAS) is the term used for a particular fit which is neither epileptic nor due to cyanotic breath-holding, but which rather results from a brief stoppage of the heart through excessive activity of the vagus nerve."
"Reflex Syncope is one of the most common forms of syncope. Sometimes called Vasovagal Syncope or Naturally Mediated Syncope, it is a transient condition resulting from intermittent dysfunction of the autonomic nervous system, which regulates blood pressure and heart rate."
I’m quite open about my condition as I find talking about it helps me deal with it better and makes it less stressful. With these conditions I have found that stress makes it worse and if I get really stressed out or get angry I’m more likely to have an “episode” or “attack” as I like to call them. Basically my heart starts pumping fast due to an adrenaline rush if it’s in anger or excitement, my head feels all foggy and I feel really sick then faint, I can’t breathe and if the rush keeps going I’ll eventually collapse and go into cardiac arrest (my heart actually stops) which in itself can be very scary.
I mean, imagine you're having what feels like a panic attack and your chest is hurting then all of a sudden black... then you wake up in a hospital bed being told “We almost lost you there, your heart stopped beating,” by a cheerful doctor. It’s a horrible condition to live with but the worst is when I have my “fit” and it is triggered by adrenaline again but from having fun or getting excited. I still pass out and then start to fit, my breathing stops and my heart rate goes so low you can’t get a pulse... nothing happens for a few seconds then all of a sudden my body starts convulsing or twitching. It’s very unnerving and worrying so most of the time I don’t do things that can cause it. But obviously if someone antagonises me then God help me because I can’t stop myself from arguing back.
For some reason my body is allergic to adrenaline so when this happens my heart rate goes too fast and I pass out or collapse. Sometimes I’m out of it for a few minutes, sometimes it's longer. Two particular occasions though stand out.
One time I had ended up in hospital and when I woke up a doctor came to speak to me as mentioned above and told me that I had been actually been technically “dead” for so long that the doctor had confirmed the date and time and my death certificate. The hospital was just about to contact my parents when I woke up. The doctors didn’t know what to do or make of it. Several tests were run and I was put on all types of machines. Eventually I got very stressed out and wanted to go home. The doctors gave me the all clear and when I went home, I didn’t discuss it with my mum as she’d had a stressful day at work.
Later that night I felt really strange and I couldn’t stop shaking, my chest hurt and I got so worried I went to talk to my mum as she was still awake and watching something on the television. As I walked into the living room I felt really faint and fell on the couch, my mum looked really worried and asked if I was OK and then with a really worried look told me I had gone blue in the face, she was about to call an ambulance for me. Then all of a sudden I felt better and my colour came back. I just needed to rest.
Nevertheless the next day I went to my doctors mentioning what had happened. I was referred to a neurologist in the University Hospital of Wales where the doctor tested my reflexes and took my heart rate, blood pressure and my weight whilst asking me what had been happening. It was not long after that that I was sent to have an ECG test (it monitors your heart rate) and I had to have a blood test. These came back clear but obviously my problem wasn’t getting any better.
It was nearing a point where the doctor was going to give up when he got me into the hospital for a tilt table test and while having this test my blood pressure was being monitored and so was my heart rate. Nothing was happening so I was given a spray under my tongue which is used for people with heart conditions like angina.
Within seconds I was having a violent attack where my heart rate had gone so high I was very scared and felt like I was going to die. Luckily I managed to slowly calm down with the help of my doctor and a nurse that was on hand. She was the one who gave me some rules to help my condition of Vasovagal which basically means fainting. I've been told I need to drink plenty of water and always keep a cool bottle with me and wear loose clothing or something like leggings... personally they are not to my tastes but to make me feel safer and healthier I am willing to try anything.
It’s been two years since my last attack and I’m still not a hundred per cent but most of the time you wouldn’t know there is anything wrong with me. I still have fun and go on some rides at the fair but not so many big ones. I can still have my arguments but now I have to be more careful as the second I feel dizzy or like my chest hurts I know I have to calm down, that’s not always as easy as it sounds but this is a condition that you can learn to live with.
There are some treatments available for some similar conditions and I know some people who have far worse cases than me, but the only medication I've been offered are beta-blockers to slow the heart rate down a bit. My condition is going to be like a long term illness, if I don’t take the careful route in life then it could end up damaging me permanently or even fatally, but so far I think I’m doing well. I know if my chest hurts for longer than about two hours constantly then I should take myself to A & E. I know I have to carry round a card as well which gives out contact details for the people who help people like me and even a bit of information about the condition.
I hope this has been informative for those who are interested and don’t get too worried, if you think you might have this condition or something similar just talk to your doctor.