(In case you need a song to listen to while you read this -- Funeral by Phoebe Bridgers sounds like Novembers feel. Enjoy :-)
Novembers are often difficult for me. I’ve experienced emotional traumas, breakups, and loss in November. I think our bodies hold onto these pains, and we relive them each time that season comes again. I first realized this during my senior year of college, when I found myself at the ER.
It was a classic story of undiagnosed POTS -- I didn’t feel quite right for a few days, but couldn’t put my finger on what was wrong, so I ignored it. One day I felt particularly bad. My chest felt tight, I was fatigued, and I couldn’t seem to breathe right. I figured I’d go to the gym, since that had helped to rejuvenate me in the past. I got on the stair climber and, within minutes, my heart rate was 195. Usually I hung out between 150-180 when exercising, and the 180 was typically just when doing sprints at the end of a longer run. More than just the heart rate, I felt terrible; nauseous, short of breath, dizzy, and like my heart was trying to escape. So, I decided to do weight lifting instead of cardio, but when my symptoms persisted, I went home to lie down. Later that day, I went to the library. By the end of the 3 minute walk, I was breathless and dizzy. I then attempted to climb the three flights of stairs to the floor where I’d planned to study. I had to stop on every flight of stairs. I simply couldn’t continue. My heart was racing, my chest hurt, and I was out of breath. When I finally reached the third floor, I started to feel nervous.
See, the previous semester, a friend of mine had collapsed in my arms. Her face was ghostly white, her lips were blue, and her eyes had rolled back into her head. I thought she was dead. Mercifully she came back to me, but when we got to the hospital, it turned out it was pulmonary embolism; multiple blood clots that had gotten stuck in her lungs. She was lucky to be alive. To make it worse, that was when I had been told that I had Behcet’s disease, which is known to cause pulmonary embolisms. I was terrified that I was next.
So on that grey November day, with chest pain and labored breathing, I began to fear for my life. I called my mom, a physician, and described my symptoms. She said that I shouldn’t worry, it was probably just anxiety from midterms. But also that she was going to drive four hours to meet me in MA so that we could go to the ER. I tried not to panic as I waited for the four hours, but eventually we made it to the hospital. They poked, prodded, asked questions and determined that it was likely a pulmonary embolism, so they took an x-ray and ran some blood tests. They found nothing. I was dismissed with a clean bill of health and told to stop worrying so much about school. I went home feeling like a stupid, over-anxious, hypochondriac.
The more people with POTS I meet, the more I hear this story. So many of us have gone to the hospital, been told we were crazy, and sent home. Many patients are given IV saline, suddenly recover, and end up with a report in their medical history of, at best, dehydration; at worst mental illness and hypochondriasis.
Of course the saline works -- it increases the blood volume, thus fixing the POTS issues -- but doctors aren’t trained to be looking for POTS, so it seems impossible. It must be all in the patient’s head. Lauren Stiles, co-founder of Dysautonomia International, was once told “you're just doing this because you're 31 and don't have babies yet and you are trying to get attention from your husband.”
For years after this event, I’d notice that every November sucked. I’d have no energy, spend hours on the couch each day, unable to get up. I didn’t feel depressed per se, because I still had interest in doing things. Sure, I felt sad when I wanted to do something fun and couldn’t, but it felt warranted. But I just figured it must be depression from all of the difficult Novembers of my past.
Two years ago, when I finally found a diagnosis that made sense, I realized that somehow my POTS and MCAS issues must be worse in November, but figured it was again because of the pattern of bad experiences. I never thought about environmental factors until yesterday, when visiting a mast cell specialist, Dr. Anne Maitland. I mentioned that I was trying going off of meds to see what happened. Her eyes went wide and without thinking she blurted out “WHAT?? This time of year?!?”
It turns out that many MCAS patients struggle this time of year. I’ve also heard from other EDS patients that changes in weather affect their joint pain. I don’t know why POTS would be worse now -- it’s no longer hot out or sunny. But for some reason I really have been experiencing worse POTS symptoms. Perhaps I’m not as diligent about my salt/water intake when it’s not summer, but I haven’t started wearing compression gear daily as I do in the winter. Perhaps it’s because of the MCAS symptoms that my autonomic responses are off. I think turning on heat (coated with dust) and starting up wood stoves, as well as the damp musty smells and erratic temperatures triggers my MCAS. Whatever the reason, there is no doubt that my health is worse this time of year. It just feels good to know I’m not alone this month.