What is POTS and Why It Sucks to Have It
So first thing first - I am putting a lot of links in this one and I really hope if you are interested in finding out more about this illness, you go check it out. I am not a doctor, just a person living with it. Also, since trying to explain some of this stuff involves using examples, I will be using what is my own information aka (PHI - personal health information) to help illustrate. So if you 1 - think that what I am saying can’t be true I literally have this info in MyChart so it exists or 2 - sounds a lot like you, well dude, hey, let’s talk because we apparently have a lot in common on this.
POTS is Postural orthostatic tachycardia syndrome . (sweet video that goes over some of it https://vimeo.com/187404694) . There are all sorts of symptoms related to it but here is the basics. POTS is a disorder of the automatic nervous system. What it means is that all those things on autopilot in our bodies, like our heart beats and breathing are sometimes forgetting to do stuff or decide to try and go for extra credit and over do it.
Example - Can you do burpees? I didn’t say do you want to but can you? Congrats, I do them and I will pass out. This is because my blood pressure doesn’t stabilize correctly. Have you ever gotten up to fast from a dead sleep or maybe gotten up when you have been sick or haven’t eaten and felt that woozy feeling, maybe seen some stars? Yup. That is my normal. Not joking. This is because when my heart changes position in comparison to the rest of my body’s positioning, it should automatically (see, that whole auto nervous system thing) balance itself out in under a second. I’ve been clocked at 9 seconds. And that is just getting to the point where it is not jumping up and down, it could still be very low.
So the idea of getting to do a burpee and not pass out, that is the dream. I don’t even try at the gym, mainly because I already risk a lot when I am working out and I would NEVER put a business much less the amazing trainers I have the privilege to work out with in that position. Especially since I never want an ambulance called. This is literally my normal. I have accepted it, for the most part, but I don’t like the drama that would come from that sort of thing. And I hate pity. So no, not at the gym. But do I practice at home, trying to build up my tolerance, yes.
And before you say “wanting to be able to do a burpee is sad for so many reasons” understand that yes, I get that and frankly screw you because I am at least trying to do something I have literally been told is impossible for me to do. What did you do today that was impossible?
I have been dealing with POTS probably since the 4th grade. That is when I started to get migraines. I have gone through so many tests it isn’t funny. Diabetes, Epilepsy, etc it has been a mess. I wasn’t formally diagnosed until about 10 years ago and I will probably do another post around all of that. But what I do want to mention is that is misdiagnosed as other illnesses a lot. I personal favorite was the diagnosis of asthma. See the tachycardia kicks in and my lungs freak out. They thought it was the other way around. Oops.
Somewhere between 1-3 million people in the US have a dysautonomia disorder, which POTS is one of. 25% of those diagnosed with POTS are on disability because it so utterly takes them down for the count, which is about the same levels of disability for those with COPD. They are starting to find linkages with it being an autoimmune condition and potentially brain trauma. It can cause dizziness and passing out, but also hives, blood pooling and swelling, exercise intolerance (I know, that is really obvious on that one), stomach issues, migraines and of course the standard, fatigue, brain fog, insomnia etc.
But what is worse is that it can be isolating. When you really want to go out with friends and yet you can’t even manage to hold your lipstick still to put it on because your body can’t stabilize itself, obviously getting behind the wheel of a car is out.
It can be overwhelming. Shocker, people with POTS have higher levels of depression and anxiety. Don’t know why always living with the potential of randomly passing out places would make someone anxious, I know, but none the less it does. But most people who don’t have this think that is the anxiety or depression causing the POTS. Yes, both are brain issues, but two very different parts of the brain. And frankly if I could just be on an anti-anxiety pill and I could get up without having to do it like an old person like the occupational therapist taught me to avoid falling, I would. But it doesn’t help, at least not with the POTS.
It can make you feel like a failure. There are days when I can’t think well. I am incredibly smart. I’m over 40 so I am done being modest, I am smart. But there are days when I will stare at a computer screen because I forgot how to spell the word when. Or when I am at the gym and I see all these beautiful fit women, who are bouncing around in these cute tight coordinated outfits, and I see how the men look at them, and I am having to do my one finger trick (when I feel like I am going to pass out I put one finger on something and push on it and just focus on the feeling so I can in essence on pass out, pretty much I am standing most times out of pure spite) knowing that I will never be able to do a lot of things that come so easily for them, even if I lost 100 lbs and became 20 years younger, it still wouldn’t happen. The idea of stepping up, or trying to balance on an unstable surface or hell BOX JUMPS?!?! THE FEAR, THE ABSOLUTE TERRIFYING FEAR these bring to me. All because my body can’t figure out how to do the basics consistently. Just last week my heart rate jump up to 159 beats per minute while I’m asleep then drop to 42 beats like a minute later and just fluctuate like this for 20 minutes around 2:30 am. I was just sleeping. I wear a fitbit all the time including while sleeping for a reason, and it isn’t for step counting, though that is awesome.
I luck out, my POTS is pretty mild in the scheme of things. Hell, I do some serious cardio and I have not passed out at the gym once (knock on wood). And I try to not let it stop me from doing the things I want to do. There are so many that have it SO much worse than me and I know how fortunate I am.
So first, if you have an “invisible illness” hugs. I get it. It is hard. Like really hard. Second, if some of these symptoms you can relate to or you know someone who has these issues and you want to know more, here are some links. I have spent many nights crying because of the impact this has had on my life because I was just so frustrated. You don’t have to do this alone.
And if you want to talk, ping me. Sometimes just being able to go “Doesn’t it suck when you are at the grocery store and all of sudden you feel like you are running at full sprint and now you are worried you are about to pass out and the thing that goes through your head is, crap, I hope they don’t call an ambulance and the milk goes bad while waiting?” and you can have someone say “Yes, that does absolutely suck” can make a lot of this better.
Overview of POTS
10 things about POTS you should probably know
Facebook POTS group