Hi there. I’m kind of copying my profile here, but I grew up feeling like occasionally my tongue and left side of my neck would “cramp” upon swallowing if my head was turned or I was lying down. I’m not sure how else to describe it. Reminds me of a cramp in my toes when they just won’t do what they’re supposed to and it HURTS.
Saw different doctors over the years and mentioned it during routine checkups. They said not to turn my head or lie down when swallowing. For years I searched online and only found people with the same problem and no answers. A few years ago I read about ES and was sure I had it but put off discussing with my doc b/c it was intermittent and not a big deal, and I really didn’t want another “well don’t do that if it hurts” talk. Last week it became a big deal. Now it’s every time I swallow. Feels like something is getting stuck or slipping out of place right under my jaw line. Pain radiates from back of tongue, just under my jawline and it’s intense. I feel sore and bruised after it happens. If I turn my head to left and tilt down, my vision starts to go black and I feel like I’m going to pass out. I don’t do this too often b/c why? Haha. But for instance, when I’m waxing my underarms, and I’m working on the left side, things feel precarious. Like if you’ve ever held your breath for too long and your head starts feeling like it can’t brain for much longer. The front of my neck also feels so so tight. I’ve been in tears for much of today between pain, and stress from pain, worry about vascular issues…I took a couple ibuprofen and diazepam and I feel almost good as new right now as long as I don’t turn my head. Swallowing is manageable, to my relief. But I can’t keep taking diazepam and still human so I need a real fix.
Appointment with my PCP next week and hoping to get imaging ordered and talk to him about the specialist I want to see (Dr. Teresa Chan-Leveno at UTSW but I’m still looking in the area and want to get my PCP’s feedback). I’m from CA and have family there so if I can get imaging and a dx, I’m open to and interested in seeing Dr. Samji.
Thank you all for this vast wealth of knowledge. Such a calming resource for me right now. I’ll update after my appointment next week, and symptoms in the meantime if they get worse.