Tiffany Kyriakos

Unfortunately, I think this is a common problem with invisible illnesses. When my husband pushes me in my wheelchair at the store, no one makes any disrespectful comment or jeer or laugh. When I use one of the motorized wheelchairs that the store provides? Completely different story. besides just trying to ignore mean people, you could always get one of those witty T-shirts that talks about whichever illness you have. That way, people can read your T-shirt and understand that you do have a medical reason for using a scooter! They sell cute ones on Etsy!

I’m so sorry you’re going through all that! Being placed in a psychiatric facility is NOT going to help your symptoms get better. Stress is a major contributor to flare ups with dysautonomia (and not because it’s “all in our heads” or “anxiety”). check out this article, it talks about breathing pattern disorders in people with Pots (and presumably anyone with autonomic system dysfunction): https://www.potsuk.org/managingpots/breathing-pattern-disorders-in-pots/#:~:text=This can cause us to,heart palpitations%2C tingling and fatigue. A similar thing happened to me a few weeks ago. My husband and I were going to go on a flight for the first time since I was diagnosed with POTS and I was exceedingly stressed out about it. We also ended up going to the ER one morning because I felt like I couldn’t breathe for hours. They did a work up and said I was breathing fine. We went home, but for the next week or so I had that feeling most of the time. Putting the pulse oximeter on really helped calm me down, because I could see it was just a feeling of not getting enough air, not a reality. They sell them at Walmart for around $25. As far as I know, dysautonomia cannot make you lose your ability to breathe on your own. Trust me, we went through the ringer trying to find people to believe me with my symptoms for years. A lot of times, if doctors don’t know much about it, they’ll think you’re mentally ill. One of the special trials of these diseases is finding a doctor who knows enough to help and is humble enough to listen and believe you. The second part is more important, in my experience. The whole feeling like there’s just a dead space in your chest, I totally get that. I have that exact feeling from time to time. Hopefully knowing that other people experience similar things will help. I know it has helped me! Also, don’t be afraid to go to the ER or even an urgent care if you’re not feeling good. I’ve gone to the ER multiple times a month on some occasions, before I got started on a treatment that’s helped me for my POTs. The peace of mind alone is worth it, in my opinion (urgent cares are just cheaper). Will be praying for you! Feel free to reach out any time, I’m glad to try and answer any questions Tiffany

Hi there! I don’t know if I have exactly this symptom, at least not in its full form. But I have issues regulating my breathing subconsciously sometimes. One time I was at the ER (for something unrelated) and was hooked up to all the different types of monitors. Well all of a sudden, the alarm started going off because my respiratory rate dropped to 5 breaths a minute. I realized I was very out of breath and had to think about breathing to get things back on track. This has happened to me in my sleep as well. I will wake up gasping for breath. It feels like I just hadn’t been breathing, like I forgot to breathe. It’s actually a type of sleep apnea where your brain just stops sending the signal to breathe. Your brain will wake you up because you’re not breathing, and you’ll start again. At least that’s how it goes for me. I notice days when I am stressed out, when I have certain allergen triggers, or when it’s very hot, these symptoms appear. Putting a pulse oximeter on and seeing the oxygen level being normal helps me stay calm and get through the episode. Something else worth noting is my rheumatologist thinks it’s related to MCAS, which I am suspected of having but not been diagnosed yet. You’re definitely not crazy though. I’ve read multiple places online that POTS affects the way we breathe. I think there’s breathing techniques that can help us retrain ourselves how to breathe properly again. I would definitely recommend getting a pulse oximeter if you don’t have one, so when these episodes come on you can see that your oxygen levels are (hopefully!) normal (make sure your hands are warm or it won’t read right). I’m no doctor, but this has just been my personal experience.