"Your brain thinks you're being decapitated from the inside"
About a year ago, I discovered Kathleen Muldowney -- a physical therapist in Rhode Island who specializes in EDS. I was pumped and paid her a visit. She gave me a book with an exercise regimen that works to systematically tighten each joint (more on this later!). She also gave me a few tips, for example that EDS patients often have spines so loose that the vertebrae rotate in different directions, and need to be eased back into place from time to time. I thought man, I'm so glad that doesn't happen to me. I'm not entirely sure why I thought the constant pain twisting my back was purely muscular, but after a quick look she found several that were pointing in wrong directions and fixed them. I remember wondering what else about me had I always assumed was normal? She then mentioned that, while the exercises may be hard at times, I should stop right away if I feel any nausea. It could be “disc slippage” in my spine. Nausea during exercise was not new to me -- it was something I experienced all the time in high school and college, especially during exercises that put pressure on my neck. I felt a chill down my spine as I wondered how many times I had caused discs to slip without even knowing.
Two nights before this year's Yom Kippur, I was doing my Muldowney exercises and felt a weird pop in my neck. It was the sort of feeling that made my stomach flip and my heart skip a beat. After a minute, however, all seemed ok. Since exercise is one of the only ways I can control my symptoms, I was determined to try again. This time there was a bigger pop, followed by a head rush. I was hit with a massive wall of nausea and had to lie down.
A bit spooked but overall ok, I went to bed and figured it’d be better in the morning. I woke up multiple times with neck pain, but that was actually pretty normal for me, so I didn’t worry too much.
The next morning, however, something was very wrong.
I couldn’t swallow. Well, I could, but it made that same sickening pop each time I tried, followed by some nausea and neck pain. In fact even when not swallowing, it felt like there was something big stuck in my throat. Speaking felt uncomfortable and my voice sounded squeezed and hoarse. On top of all of this, I had sharp pains in multiple parts of my neck unless it was held perfectly straight. This was not an easy feat, though, since my head seemed to somehow weigh five times more than it had the day before -- holding it upright was now an exhausting task.
I knew I needed to get care, and right away. I had been warned to not go to the hospital for things like this; ER doctors don’t know anything about EDS and often injure patients even worse because they don’t realize we need very different care than the average patient. I needed to see my EDS-aware PT. I called but she was not available until lunch. So, I went to work. I told my students that I needed to take it easy, and they were wonderfully understanding. It was a much-needed distraction from the fear that was gradually mounting in my body.
When the time finally came, I went to the PT and informed her that it felt like one vertebra had popped to the side, and somehow another one was pushing into my throat. After examining me, she announced that I was actually completely right. My C-4 vertebra had popped to the side and then gotten stuck on my C-5. This has nudged C-5 in the opposite direction. All of this had left C-3 loose, so it slipped forward into the muscles around my esophagus and trachea.
Luckily, it was an easy fix. While on my back, she wiggled the vertebrae side-to side, then turned my head and asked me to tighten certain muscles, which pulled things back into place. To push C-2 back, she had to touch the front of my spine. Before going in, she warned me,
“this is about to feel terrible. Know there’s nothing wrong, it’s just that your brain sets off an alarm when that part of your spine is touched. It thinks that you’re being decapitated from the inside.”
She wasn’t wrong. She gently eased her fingers behind my esophagus and trachea, and made contact with bones. A sudden terrible feeling erupted through me. It wasn’t quite pain, but made me want to cry out nonetheless. After a few seconds (which felt far longer), there was a gentle pop and the pain I’d felt all day went away.
It was magical. The pain, lump in my throat, and inability to hold my head up simply vanished. But more than this, the nausea, diarrhea, tachycardia, and sweating I’d experienced all day went away as well. I noted this to her, and she decided that my misaligned vertebrae had probably irritated my vagus nerve. The vagus nerve controls your parasympathetic nervous system -- resting, digesting, and heart/lung regulation. You know, nothing crucial…
Things seemed to be better! I’d be fine for the following day, which happened to be Yom Kippur. But that night I could barely sleep. My neck pain grew worse and worse. By the time morning came, the sharp pains may have been eradicated, but were replaced by muscle spasms in my entire neck. The misalignment, like a dislocation of any joint, had stretched out the ligaments that hold the spine together. My neck was now too loose, so the muscles were spasming to hold it together. The result was not comfortable. I went to synagogue, but had to stand and sit with my back against a wall, and at times had to go lie down. At the evening’s feast, surrounded by friends and family, I felt the dysautonomia sneaking back in, and by the end of dinner was hiding in a bathroom upstairs, praying that no one would come looking for me.
The next day, the pain had somewhat lessened and things seemed to be back to normal. Unfortunately the problem with EDS is that, once stretched, our collagen cannot be repaired. Damage to ligaments is permanent. So for several months after this incident, the slightest pressure could pop my neck out again. I’d wake up with neck pain and spend a day with nausea and diarrhea until I could wiggle it back into place. Some days I could feel it loosen and would have trouble focusing on work or friends because I was just trying to hold my head up straight.
I felt like Nearly Headless Nick from Harry Potter.
There is some good news to this story. It’s true, my ligaments may not be re-tightened, but my muscles have picked up the slack. My EDS exercise protocol worked specific muscles in my neck until they were strong enough to keep things tight and in place. Sure, when my hormones are all out of whack I may have a few days with a loose spine, but I rarely have to worry about it popping or irritating my vagus nerve. What’s more, I now have a super-cool-very-fashionable cervical collar (neck brace) to wear when needed. After all, I’ve always wanted to foster curiosity and questioning skills in my students...