Hey there, Sparklers 🙂
Lately a lot of people, both friends and followers, have been asking what NMRS is. Not a lot of people have heard of it and it’s pretty difficult for doctors to spot too. I suffer from NMRS, but there’s no short, easy way of explaining it to people so I decided to make this blog post so I can explain in depth.
First things first, let me explain about what was happening before I got my diagnosis. I believe I was around 15 years old when things began. I started having severe dizzy spells which would lead to me losing my balance and falling over. At this point I never lost consciousness, I would just struggle to keep my balance. Whenever I walked anywhere I couldn’t walk in a straight line. I would zig-zag all over the path as if I was drunk. I found it a little strange, but I wasn’t really worried about it at this point. Some people have better balance than others, so I thought that’s all it was.
About a year later, the dizzy spells became more severe. Whenever I would have one, I would end up vomiting and/or passing out. There would be times where I would pass out up to 12 times a day. I spent more time unconscious than I did awake at this point. I went to the doctors and they sent me for all kinds of different tests. I was in the hospital a lot, having blood tests, scans, and all sorts of other things. This took place over the course of two years.
Eventually I got referred to a cardiologist who told me I needed a tilt-table test. A tilt-table test is where you lay down on a hospital bed, with your legs and upper body strapped in, and they slowly tilt the bed until it’s in an upright position. You have to stay like that for quite a while so they can see what happens to your blood pressure and heart rate. Not much was happening for me, so after about 20 minutes they gave me a GTN spray under my tongue. GTN spray is given to people with angina and it relaxes and widens blood vessels in your heart and the rest of your body.
About 30 seconds after I was given this spray, I started to feel ill. I felt nauseous, I started shaking violently, I couldn’t hear or see anything, and then I completely blacked out. When I came round, the bed was flat and I was in recovery position with a sick bowl next to my head, just in case. This left me so weak that I couldn’t walk on my own, I had to be helped into a taxi.
About a week later my cardiologist rang me and asked me to go and see him. That’s when I was finally diagnosed with NMRS. NMRS, or Neurally Mediated Reflex Syncope, is a condition that affects your blood pressure and heart rate. When you’re standing upright, your blood pressure drops really low and the veins in your legs open up. The blood from your body starts to pool into your legs, leaving your upper body starved of oxygen and that causes you to faint. At first it was believed that I only had a mild version, so I was just told to drink plenty of water, add salt to my diet and avoid hot temperatures.
But no matter what I did, things only got worse. I kept going back to the doctors, and back to my cardiologist, but nobody was doing anything about it. By this point I was injuring myself almost daily, I kept collapsing out in public. I was covered in bruises and scrapes from falling on hard surfaces. I had an ambulance rang for me several times because people thought I was having an epileptic seizure, and this was when doctors and paramedics started accusing me of faking for attention. Obviously it wasn’t an epileptic seizure, because I’m not epileptic, but that doesn’t mean that I’m lying and faking it.
Finally, early last year, I was put on medication for the NMRS. I wasn’t having seizures, I was shaking violently because I would go into shock from being starved of oxygen. It was just my body’s way of reacting to the condition. Once I got put on the medication, things calmed down for a while. For a good 4-5 months, everything was fine. Then things started getting worse again, so I ended up on the highest possible dose of medication they could give me. But I was STILL blacking out and going into shock.
Things got so bad that I developed new symptoms, palpitations and chest pain. I thought they were symptoms of NMRS, but apparently they’re not. This time I was stubborn and I kept going to my cardiologist every time I had chest pain or palpitations. I had about 20 ECGs in the space of a year and a half, but nothing really showed up because whenever I had an ECG I had no symptoms. (Typical, right?)
I was having palpitations and chest pain all the time by this point. Sometimes my heart would stop and start by itself while I was sleeping. At last an ECG picked something up. I had an erratic heart beat, which was causing the chest pain because pressure was being put on my heart. My heart rate would drop below 40bpm and then spike up to almost 200bpm. So I was scheduled for an operation to have a loop recorder fitted near my heart. A loop recorder is a little metal machine that records your heart rate 24/7 and can alert the hospital if anything happens. They know if my heart rate goes too low, too high, or if it stops and starts in the middle of the night. This little device is pretty much life saving. I’m not sure how long it’ll be inside me for, but knowing that the hospital will be alerted if anything happens is really comforting.
And now, I’m still on the highest dose and I have to go to hospital a couple of times a week because something happens to my heart rate and I need to be checked over, but things are okay. I’m alive, and I’m thankful. I’m limited to what I can do, like I can’t go out anywhere on my own in case I collapse. I’ve been told to avoid walking near main roads and water. I can’t do anything that gets my adrenaline pumping like going on rollercoasters or jumping out of a plane (which SUCKS because I’m a massive adrenaline junkie) but things could be a lot worse.
Also, shout out to RackaRacka, Sebastian Olzanski, Nate Garner, and the Dolan’s for helping me through this exhausting process. I’ll leave their social media links below if you wanna check them out 🙂
Thanks for reading, and if any of you have this too, let me know! We can be twins! 😛
Lots of love,
YT – https://www.youtube.com/user/Therackaracka
Twitter – https://www.twitter.com/rackareal
IG – Danny: https://www.instagram.com/therackaracka Michael: https://www.instagram.com/racka_ashes
FB – https://www.facebook.com/Danny.Philippou.Racka.Racka/
Snapchat – rackareal
YT – https://www.youtube.com/user/ThatSpanishBoy
Twitter – https://www.twitter.com/sebtsb
IG – https://www.instagram.com/sebtsb
Website – https://www.sebastianolzanski.com
Snapchat – spaceshipseb
YT – https://www.youtube.com/channel/UCICdq4578-n8XnH5Wg8ERbw and https://www.youtube.com/channel/UC-ydS7NF7usEMMf46TYWASw
Twitter – https://www.twitter.com/natekgarner
IG – https://www.instagram.com/iamnategarner
Snapchat – imnategarner
YT – https://www.youtube.com/user/TheDolanTwins
Twitter – Grayson: https://www.twitter.com/GraysonDolan Ethan: https://www.twitter.com/EthanDolan
IG – Grayson: https://www.instagram.com/graysondolan Ethan: https://www.instagram.com/ethandolan
Snapchat – Grayson: graysondolan Ethan: ethandolan