It’s finally October! More football games, more pumpkin spice, leaves changing and so much more fun things. October is Down Syndrome Awareness Month as well as Dysautonomia Awareness month. If you’re wondering what dysautonomia means it’s basically an umbrella term for many diseases. I have POTS which falls under dysautonomia.
POTS stands for Postural Orthostatic Tachycardia Syndrome. Say that 6x fast. So in short to get diagnosed with POTS you have to present some symptoms in order to do a tilt table test (this is the worst diagnostic thing I’ve ever done and for that matter worst test ha). So to get diagnosed you have to either have to have a heart rate of >130 bpm, or your heart rate increases at least 30 bpm within 10 minutes of standing. The tilt table test puts you safely in an upright position. My cardiologist had warned me you may not like me after this test and I’m guessing you’re going to feel pretty miserable. I thought oh I may just be sick 1 day or something. Let me tell you I’ve never been so wrong! You lay on a bed lying flat for 10 minutes to get your baseline hear rate and blood pressure. Then they immediately rise the bed so you’re standing upright from 30 degrees to 60 degrees. They have many straps so if and when you do pass out you don’t get injured because you’re strapped in. I remember 5 minutes in my knees were burning and I was feeling really dizzy. By 10 minutes my legs were going out but I didn’t fall because I was strapped in. It’s supposed to be a 1-2 hour test. Mine ended at 20 minutes. I failed the test which meant I likely do have POTS. I started dry heaving and sweating and felt awful. They have a lot of monitors on you so you stay safe. They don’t push you and stop the test when it’s not safe to be upright anymore. They brought me apple juice and I started feeling better. You can’t eat or drink after midnight (basically to prevent you from throwing up). I started feeling better when I got that cold apple juice and they had me lay flat for a while to get it under control then carefully sit up on the bed. They also (or at least the hospital I got tested did this) put an IV in me so in case something serious happened they could administer fluids right away, thankfully mine wasn’t used.
When we got home I felt miserable. I went to straight to bed and slept for a long time. I wasn’t hungry. Every single time I got up that night to 3 days later I threw up every time. I had to eat my meals laying down and be really careful when I had to get up. I didn’t think I would feel that miserable. It took 3 days for my body to recover from a 20 minute test.
I don’t talk about POTS as much as I should and that’s the main reason I’m in the wheelchair. When this started about 2 1/2 years ago I was walking still a little bit and in our old house we had a tiny step from the garage to the door and another little step to get in the house. Then a short walk through the entry way and up 3 more steps. I started passing out and throwing up every single time. I was fainting also. I would fall just after getting into the house or sometimes I would pass out after doing 2 steps. When I went to Cleveland Clinic the first visit my doctor said I needed to get checked for POTS as my heart rate was very high during that visit.
My doctors told me I needed to rely on my wheelchair and scooter a lot more. I can walk at home with a walker but always have my phone on me in case I pass out. Since being in the wheelchair I haven’t passed out in about a year but I’ve had many close calls. A wall has prevented me from falling and sitting down on my walker immediately. I don’t talk a lot about it but that’s the main reason I am in a scooter/ wheelchair. Also because my joints get very red warm and swollen. Doctors are still trying to figure out what’s going on.
POTS is my most frustrating diagnosis. It can flare up at any time and hit whenever. Season changes are the worst and a drastic change in symptoms. There have been days where my lowest heart rate the whole entire day was 100 bpm. The best way to describe it is imagine running the fastest and hardest trail in heat. That’s what it feels like to me within 5 to 10 minutes of standing. It feels like you exercised way too hard but you didn’t work out. Another symptom that really bothers me is temperature regulation. If I get too hot I get sick if I get too cold I can’t warm up automatically I have to use heat warmers or bundle up. There is never a middle ground I’m either always a little cold or a little hot. There are many other symptoms that can happen with POTS but these are just the few I mentioned.
Dysautonomia means something in your body isn’t working automatically. So in my case when I stand up my blood flow doesn’t regulate it’s reduced when I stand which then messes up your heart rate. If I lay down or sit down I can usually bring my heart rate back down.
Also with this abdominal pain I have been dealing with since July was thought to be my gallbladder after running tests and an appointment with the surgeon he doesn’t think it’s my gallbladder and in my case the risks from surgery were greater than the benefit. There is a strong correlation with POTS and gastrointestinal diseases so the doctor thinks that is likely what’s going on. I meet with a gastroenterologist soon.
So next time you see someone in an airport with a wheelchair, or parking in the handicap spots and they look fine to you please know you have no idea what they are going through. They may have POTS. Just be kind and be supportive. This isn’t a made up diagnosis either. I currently don’t take any medications for my POTS because those meds raise your high blood pressure and since mine is sky high without it doctors decided it was better to manage blood pressure.
If you have any questions let me know.
You can show support of Dysautonomia by wearing teal this month. I’m planning on wearing teal/turquoise on Tuesday October 8. You can join in by using the hashtag #tealforPOTS.
“But those who hope in the Lord will renew their strength. They will soar with wings like eagles; they will run and not grow weary. They will walk and not be faint.” -Isaiah 40:31