Living the POTS life…

It’s not easy, but what are you gonna do?

I have sinustachycardia and POTS (Postural Orthostatic Tachycardia Syndrome).
For this, I take Procoralan, a medication to lower my pulse. I also take nitroglycerin, spray, when I need it. I have tried medication for my bloodpressure (it’s a bit too low and likes to drop every now and then), but sadly I can’t take any of them due to side-effects.

Early 2015 I started to get more tired. At times, I could hardly walk from exhaustion. It came every now and then. It was because of my POTS. Nothing to do but to ride it out. Every now and then I would get really, really tired. Exhausted. So I would rest a few days, and I got a bit better.
But I never came back to how I was Before. But I could manage!

Fast forward to late July/early August 2016. I started to get more tired again. Slept more. Didn’t have the same energy at all. Still my POTS. Nothing to do.
Since then, I’ve a had a small, irritating cough when I do anything. If  walk to fast, if I lift anything a bit too heavy etc. My doctor determined I had gotten worse. Earlier, tests showed I could work up to 75%. Now they showed 50%. And trust me, I could feel the diffrence!

IN the Days Before Christmas I slowly got more and more tired. More and more exhausted. I had to walk slower, I could hardly carry anything. I got really tired and I needed more sleep. It started to get really hard doing my physical therapy too.
Since then, it has only gotten worse.

I have been home this week. Friday afternoon, Saturday, Sunday and Monday was spent on the sofa, sleeping. Too exhausted to do anything. Out of breath from everything. Walking from one room to the other was hard. Eating started to get hard too. I got tired from it.

Tuesday and Wednesday was also spent on the sofa. A Little bit less sleep, but still way more than normal. I got my hopes up. But then I ate… I can hardly eat. I get so tired after…

An then today. Thursday. I was hoping things was going the right way but no. I’m constantly out of breath. I’m so, so tired. I’m exhausted. After I eat it’s really hard to Breathe and I don’t even want food anymore. Obviously food is kind of important (duh!) so I make mysel eat. Today I had a tiny sallad. Tomatoes, corn, spinach, parmesan and a tiny amount of ham. It was such a small portion, but it was enough to knock me out. I collapsed on the sofa and just focused on breathing. I even had to call for help so I could go to the bathroom. It took about 3 hours to get a bit better. I’m still exhausted and out of breath. It’s been 4 hours now.
When I go to bed, I can only breathe properly if my head is a bit elevated. Same on the sofa, I can’t sit straight, I have to lean to the side with a big pillow. Not too high and not too low.


But what has me a bit concerned right now is my weight. I don’t eat much at all, but I’m not losing weight either. That’s a bit odd. I think I’m retaining fluid. My belly is all swollen at times.


On Monday, I go back to work. And doing that without being able to eat properly can only end bad, I work 50% (4hours/day), but it’s still hard on my body.
On Tuesday my mom (whom recently had a minorheart-attack) is going to see a nurse at the heartclinic. I’m going with her for support, and because they want a relative there too. I’m gonna tke the opportunity t ask a few questions about myself.

I’m going to update here along the way (as much as I can, since I’m super exhausted all the time).

Do you have POTS? Please feel free to leave a thought or two 🙂


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