What the heck is that?
Whenever I tell someone I have POTS, lupus and fibromyalgia, they’ll usually tell me about someone they know who has lupus or fibromyalgia. They skip over the POTS comment completely. Maybe they think I’m having brain fog and just threw an extra word in there, like “hey, I have lupus, toilet paper, and fibromyalgia”. The way my brain works lately, that wouldn’t be so far off.
But what IS pots?
Postural Orthostatic Tachycardia Syndrome – Hence, why saying POTS is WAY easier.
For a long time I would get dizzy spells, but they’d be far and few between. Sometimes I’d ask someone to pick me up from work because I didn’t feel comfortable driving but it was rarely happening. Then it started occurring more and more. And not just dizzy spells…I’d stand up and have to take a knee or lay on the floor because if I didn’t, I’d pass out. I had to stop taking hot showers because never fail, that would make me feel like I was about to pass out.
After this went on for a few months and was becoming substantially worse, I finally talked to my rheumatologist about it. She said without skipping a beat, “Oh, you have POTS. Your blood pressure is always low, your heart rate increases for no reason, and you get dizzy”.
Okayyyyyyyy. So what does that mean?
So I was told to drink some gatorade and that should help.
Nope. It got to the point that whenever I would stand up I’d have to get up super slowly and even then there were days where I’d have to go down to the ground. “Tebowing” is what my boyfriend called it. It became funny because I knew as soon as I’d go down, I’d feel better and I never actually passed out. But it was becoming more frequent so at my next rheumatologist appointment she suggested I see my cardiologist. As soon as I told him my symptoms he said “I told you years ago you had POTS…didn’t you go for a tilt table test?”
He DID tell me to go for a tilt table test about 7 years ago. But once I realized what it entailed I chickened out big time and let it go. After letting him ream into me for a bit, I finally agreed that now it was necessary.
What exactly is a tilt table test?
Just what it sounds like.
Performed at a hospital by an electrophysiologist, you are set up with an IV and strapped down to a table. You lay there for a bit trying to relax, and they take your vitals (EKG, blood pressure and heart rate are the most important because those are the variables that they are looking to change during the test). The point of the tilt table test is to mimic the symptoms you are experiencing at home. Some hospitals administer a drug to speed up your heart if your symptoms don’t happen, but luckily mine didn’t do that (I was PETRIFIED of receiving a drug like that). I’m scared of new medications as it is and I also hate when my heart is racing so once the nurse told me that they don’t administer that medication, I jumped up and hugged her…for real.
So I was strapped down to the table, trying to stay as calm as possible because I wanted them to see what it was like to go from a relaxed state to a standing state.
The test was supposed to go on for 45 minutes, and I was supposed to tell them any symptoms I felt throughout. They kept ensuring me how easy it would be, and that I probably had nothing and it would be boring just standing there. So I nodded my head, put my big girl pants on (LITERALLY), and put my trust in them.
I so badly wanted my boyfriend in there with me but no one was allowed except the nurse, nurse practitioner and doctor. But like I said, once I realized I wasn’t going to be given any medication, I felt tremendously better and less nervous.
An IV was started and I was strapped down. The nurses took my vitals and then slowly tilted the table up. They reminded me to tell them any and all symptoms I felt, no matter how small. As soon as they stood me up I started feeling woozy. Not the typical symptoms I’d get where I’d have to go down to the ground, but not a comfortable feeling. I felt off and knew this was going to take a turn for the worse.
About two minutes in I started feeling dizzy and told the nurses. I was very uncomfortable because my heart was pounding out of my chest and felt like it was going a thousand beats per minute. I informed the nurses of this too and they encouraged me to keep going but if I needed to stop, I could.
But I couldn’t stop. Just like when I started Benlysta for lupus, I needed an answer as to WHY this was happening. Even though both my rheumatologist and cardiologist were convinced I had POTS, depending on how the tilt table test went was how they would treat me…and I needed to feel better.
Continue test of hell – I mean tilt table test.
After about five minutes, I was feeling horrible. My legs felt like they weighed a thousand pounds, I felt like I was going to throw up, and my heart was still beating out of my chest. Again, I told the nurses and they said that I was doing great and to keep going…what else could they say?
I just focused on my breathing. I figured if I could take some deep breaths, my heart rate would slow down. The breathing relaxed me a bit but I just kept feeling worse and worse.
At the 10 minute mark the nurse practitioner popped her head in the room next door where the electrophysiologist was and asked him to check on me. Immediatly after seeing my heart rate, blood pressure and the fact that my face was gray, he said to stop the test.
The nurses slowly lowered the table to have my legs above my head and started a saline drip. According to one of the nurses, I almost set the record for the fastest to stop the test. They had one other who passed out after about three minutes but besides that she said this was up there (being as competitive as I am, I’m kinda bummed I came in second but oh well…). In the haze I was in when the doctor stopped by as I was recovering from the test, I heard him mutter “POTS” and then walk out saying “she needs to see me for a follow up”.
OK. I have a diagnosis. Once again. For the THIRD time. How many illnesses am I going to collect? Just put it on my tab.
For me, my blood pressure didn’t significantly drop, but my heart rate was extremely high for 10 minutes and didn’t go down at all.
So what is POTS exactly?
Postural Orthostatic Tachycardia Syndrome lies under the umbrella term of dysautonomia, which means some sort of malfunction of the autonomic nervous system (ANS). The ANS controls all involuntary things happening in your body such as your heart rate, blood pressure, temperature regulation, etc.
According to Dysautonomia International, “POTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing.” Dysautonomia International continues to explain that while performing a tilt table test, “The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing”, which is what I experienced. They continue to explain “While the diagnostic criteria focus on the abnormal heart rate increase upon standing, POTS usually presents with symptoms much more complex than a simple increase in heart rate. It is fairly common for POTS patients to have a drop in blood pressure upon standing, but some POTS patients have no change or even an increase in blood pressure upon standing. POTS patients often have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation.”
OK. So what does all of that mean?
Due to the fact that my electrophysiologist knew my cardiologist, he agreed that I could follow up with him instead, but he told my cardiologist what his suggestion of medication was for me. My doctor explained POTS in an awesomely easy way to understand which I use to explain to others.
- When a typical person stands up, their heart rate will rise a bit, their blood pressure will drop a bit, and then it will even out. Picture it like this…when you stand up, gravity makes your blood go down towards your feet (hence the slight increase in heart rate and decrease in blood pressure). But there’s a “clamp” that stops the blood from going down and that’s when your heart rate and blood pressure return to normal. This change is so slight that most people don’t even notice it.
- For me, the “clamp” is faulty. So I stand up, the blood goes down towards my feet due to gravity, and keeps going. That sends my ANS into hyperdrive because my brain is losing blood flow. So my heart rate speeds up tremendously to try to get the blood circulating again and due to the lack of blood flow to my brain and blood pooling in my legs, it makes me feel like I will pass out (pre-syncope). The majority of patients with POTS don’t actually pass out, they just feel like they will. So I go down to the ground, my body regulates itself, and BAM I’m back to normal.
My doctor said that he usually treats POTS with a different medication that the electrophysiologist suggested. I was torn. I’m already on so many medications including benlysta which is a pretty intense monthly infusion. So I flat out asked him if medication was necessary. He said he had no problem with me TRYING without medication but if it didn’t work, we both agreed I’d start on something.
So how was I going to naturally treat it in the meantime?
- Salt. On. Everything. I’m pretty sure my cardiologist’s exact words were “make sure you’re OVER salting your food”. Awesome, all I’m going to taste is salt. But OK…I can do that.
- Electrolytes and fluids. He suggested gatorade, propel or anything similar to that, and to drink tons of it. He also said that I could try to concoct my own drink at home (which I did and it was an epic fail…I felt like I was drinking straight salt water – no thanks).
- Get up slowly. Ok. I can handle that. Done.
- Exercise. Wait what? How am I supposed to exercise when I feel like I’m going to pass out? After a discussion with him and doing some research on my own I learned that recumbent exercises are best (biking, rowing or swimming), to eliminate the chance of passing out. Also, weight training for your legs and butt is super helpful to increase the circulation from my legs back to the rest of my body.
- Compression socks. After searching online at grandma-looking stockings, I found some I loved, pro-compression.
For now, I’m pretty stable. I still get dizzy sometimes, especially when it’s hot or when I don’t drink enough. But as long as I stay on top of what I’m supposed to do (salt my food, drink my electrolytes and stay cool), I’ve been avoiding medicine, which is ultimately my goal with every illness I have.
So there you have it. POTS in a nutshell. Now I just need to stop burning all of my actual pots at home when I cook :-).