You may not know what POTS is. It stands for Postural Orthostatic Tachycardia Syndrome. Say that 5x fast. If your a fellow potsie I hope you enjoyed the beating pun. POTS is a form of dysautonomia, which means that when I stand up my body doesn’t do what it needs to do automatically. So when I stand up my heart rate quickly increases by 30 bpm or exceeds 130. If I stand for too long I will pass out and get sick. Thankfully that part hasn’t happened in awhile.
I used to have so many episodes in the old house. Before we had the ramp installed I would pass out and get sick every single time. So thankful for this new house that has no stairs and is fully ADA accessible on the main floor. I’m getting pretty good at knowing my symptoms and laying down when they hit.
So, when I stand up my legs pool an excessive amount of blood and it doesn’t balance out like it does in a healthy person. When you’re not getting enough blood to your brain it causes the lightheadedness and fainting.
I had to get diagnosed by doing a tilt table test. Which is where you are in a hospital bed and then strapped in so if you pass out you’re ok. My cardiologist apologized in advance because he knew I would get sick. I lasted 20 minutes so I failed the tilt table test and got diagnosed with POTS. After the tilt table test I was bedridden for 3 days. If I got up to go to the bathroom, I passed out and got sick. I had to eat my meals laying down – it was awful!
Due to POTS, I also can’t regulate my body temperature. I’m either hot or cold. There isn’t an in between anymore. If I’m outside too long I feel awful and I have to come in and help cool my body off by placing ice packs and fans around me. The heat in particular is so hard on people with POTS as it makes our symptoms get bad quickly. You’re not supposed to take hot showers, but who wants a cold shower? It’s not fun. A doctor told my Mom and I that it’s important that I control the temperature in the house. So in the summer I usually need it 68-70. My Mom and sisters are troopers. The winter is tricky because I need heat but can’t get too hot.
POTS is a big reason why I’ve lost so much independence. Mine has gotten worse each year. I can’t stand for more than 10-15 minutes. This is why I need a shower chair and wheelchair and scooter. I need the walker for balance. The other reason I need those is because my joints get so swollen and red and warm.
Seasonal changes and temperature changes are really hard for those who deal with POTS. It makes our symptoms so much worse. So even though I wasn’t outside a lot due to the high temperatures and humidity, this week was rough.
The best way I can describe POTS is it feels like you’re sprinting so fast but you’re either sitting down or laying down. My heart rate goes up and it looks like I’m exercising but I’m not. I read somewhere that some doctors describe it as worse than living with COPD.
It can be hard for people to understand what’s happening and it can look like we’re making excuses because you can’t see it. POTS is very real and its symptoms can hit fast and become very intense. Everyone is different, so while you may know someone who doesn’t have that many symptoms, that doesn’t mean everyone else is the same.
Since having POTS my migraines have become so much worse. I’ve been having stomach issues for a year now and the doctors are still trying to figure out what’s going on. POTS is linked to a lot of gastrointestinal diseases. The one doctor highly suspects that’s what’s going on.
My POTS isn’t under control and I’m not sure it will be. Due to my high blood pressure I can’t take any of the medications for POTS. The cardiologist said it would be best to manage the blood pressure. My nephrologist agreed my high blood pressure is so bad. I actually have to take 2 different types of blood pressure medicines to control it. I used to have perfect blood pressure until I was in the hospital with the infection.
They’ve run lots of tests but can’t really figure out why my blood pressure is so high now at such a young age. My blood pressure does drop if I stand too long. Salt also helps people with POTS feel better. Due to my high blood pressure I’m very limited on that too. I do drink as much water as I can each day to help with my symptoms.
It’s so hard to work out with POTS because of what happens if you stand up and work out. This is why my doctors said I can’t work out – not only would it make my POTS bad but they said I would go into a horrible flare-up also. Even in a pool where it’s more gentle on your body I was getting sick and red knees.
They believe my POTS is secondary meaning it’s caused by something else. POTS is linked with Lupus and Sjogrens and Rheumatoid Arthritis, which are the things I get tested for.
Since my POTS has been getting really hard to manage and live with, I was looking into some places to go to that specialize in POTS. Then COVID hit and I haven’t made an appointment with anyone yet because of that. I don’t really have anyone monitoring my POTS. I saw a neurologist for awhile but had an awful experience and I just haven’t gotten around to seeing someone. (Very limited Neurologists in this region).
POTS also causes severe fatigue and I get so worn out so easily. I also experience brain fog which I get a double wammy because I also get that from Fibromyalgia. This is a symptom that is so embarrassing to talk about. I can be in a conversation with someone and I’m focusing on that and in the middle of it I can completely forget what we we’re talking about. I mix up words or I completely forget what I was going to say. It’s embarrassing because it makes me look and feel like I wasn’t listening to someone or that I’m distracted. Then I get anxious because I’m aware of what’s happening but I can’t get the words out that I need to. Sometimes I just don’t talk a lot on a rough day because I don’t want to say the wrong things.
My sleep is also really messed up due to POTS because it messes with your sleep cycles and you may experience really bad insomnia. My sleeping medicine helps the insomnia a little bit. I also have compression socks but I’m terrible at wearing them because I often forget.
Usually when I’m having trouble with my heart rate I get out of breath and become really thirsty. It’s so weird to be sitting down or standing and feel like you’ve just been working out so hard. Below are pictures of my heart rate this week just to give you an understanding of what it’s like. Keep in mind I don’t wear it during bed and I don’t stand a lot but you can see when I do based on how high it goes. I’ve also recently started experiencing lower heart rates at times which is something I’ll bring up with my family doctor.
This is what my heart rate was yesterday Thursday August 27. This wasn’t a work day keep in mind so I wasn’t sitting up as long as I usually do.
This is my heart rate from August 21 to the 27.
So this is my heart rate for the month. As you can see it says workout at the bottom. I haven’t worked out at all. My heart rate goes high and it thinks I’m exercising.
So if you know someone with POTS take a moment to look at my stats and imagine how awful that must feel. I don’t want sympathy for this, I want awareness and understanding. POTS is so hard to deal with and if more people are aware and have a better understanding that will help. You may see someone have a handicap parking tag and they can appear fine but they could have POTS. Saving those extra steps truly helps.