Not been round these parts for a while, but having a few issues, and I need to chat to other bendy-folk before I go insane (well more than usual). Thought I'd keep the place tidy and recycle this thread.
For the last year and a half, I've had trouble at night where I've woken up because I've not been able to breathe. It's never lasted long, and as soon as I wake, I'm fine. But for the last month, my throat is regularly 'closing up'. My throat clicks a lot, and when it closes, it literally feels like I'm being strangled, I also occasionally have trouble swallowing. Sometimes it appears to be alleviated by holding my head up high and straightening my neck and sometimes by swallowing repeatedly. It also appears to happen when I've spent a day with my head down reading or typing at work. Rather strangely, my voice also regularly changes pitch, going from quite deep and gravelly to a bit squeaky. It's very odd!!!
I went to see an emergency doctor the first time it happened and he said there were no lumps in my throat, so I mentioned that I have EDS and he said that it'd likely be that. He sent me for a blood test just to make sure it's not my thyroid and an ultrasound. Anyhow, went for the ultrasound today, and the rather unhelpful doc asked me if it was just my imagination, I explained the EDS and he said that cartilage problems wouldn't show up on an ultrasound. Then started quizzing me about my job and whether it was stressful or not (it isn't, I love my job, it's awesome). I think he was trying to see if I was having panic attacks or not.
My usual GP (who is very knowledgable on EDS and is great) has now retired, so I now have to go and see a random doc on Friday morning. I'm just wondering if anyone has any advice for me to get the most out of my appointment. I tend to get a bit flustered when I feel like I'm being dismissed, and I'm not sure if I can say that I definitely think its an EDS problem.
Anyhoo, needed a bit of a rant to folk that know what I'm talking about and get some advice.
EDS type 3 and fibromyalgia. Software/web tester extraordinaire. Bakes like a fiend. Happy to supply cake for charitable donations.