The last few nights I keep waking up in the early hours not being able to swallow, my neck feels like it’s collapsed and when I lie on my back and turn my head to either side (left side worse) it feels like my head is going to twist off. Sometimes I feel better with two pillows, then after a few nights I have to switch to one pillow then back to two again. I get lots of crepitus when moving my head/neck. I’m still waiting for my NHS ENT appointment, a 29 week wait… sorry to everyone, will probably be 29 weeks of me whinging about my symptoms on here, lol. I just don’t have anyone to whinge to about it at home.
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@Skatkat I am so sad to know that you are suffering. I’m holding you in my thoughts and wishing you peace.
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That sounds horrible, so frustrating if you can’t find a decent sleeping position…I did find a V shaped pillow was helpful sometimes, as well as being propped up with a wedge pillow & another couple of pillows, but I ended up sleeping in a recliner leading up to my surgery as I felt rough. Some members have tried a soft neck collar, I don’t know if that might help stabilise your neck a bit if you sleep on your back? Have you tried any nerve pain meds at all, like Amitriptyline? That really helped with sleep as well as the pain for me (before the VES symptoms ramped up), your GP can prescribe them.
Feel free to vent & whinge here, that’s hard if you’ve not got anyone to sound off to, we understand…Sending you a hug, 29 weeks is an awful long time to wait just for an appointment 
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Whinge away! As @Jules said. We’re here for you, @Skatkat. I’m so, so sorry you’re symptoms seem to be getting worse. I will pray you’ll have reprieve days & nights where you feel less awful & can get better sleep.
A wedge pillow helped me a lot after surgery, but if I’d known to use one prior, it might also have made a difference. The neck collar Jules suggested could also make a positive difference for you. Even wearing it during the day could help remind you to keep your neck in a more neutral position which might help reduce night time symptoms.
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Thanks everyone, I went back to two pillows the last couple of nights and have slept a bit better. Unfortunately I can’t wear a collar, my neck is so sensitive to it (also sensitive to polo necks/high neck tops) it feels like it’s choking me. I used to be able to wear polo neck tops all the time until my symptoms started.
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I’m sorry a collar isn’t an option, @Skatkat, but I can also sympathize w/ your neck sensitivity. I used to like turtle neck shirts in the winter but can no longer wear them. I think it’s because of my thyroid issues though, not due to past ES but maybe it’s a combo.
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I’m so sorry you’re dealing with that. I find two pillows and sleeping on my side is what works best. You’re in good company for whining so go for it.
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Glad you have had a better night, hope it continues
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I hear you @Skatkat - I tune in here and often post a rant or whinge & wallow and get support and understanding here - something my family just can’t or won’t do. I send you love and support as it’s so so hard to feel alone, in pain, life on hold, waiting so long for appointments.
I’ve just had my SPECT CT - no results yet - like you, sleeping is difficult and I’ve tried so many positions and pillows. I’ve found I’m needing to wear a soft neck collar more and more and even a travel neck pillow. The orthopaedic neck pillows are just too hard. Hope you don’t wait tooooo long! I’m on nhs and waits are long. 
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Those orthopaedic neck pillows are terrible I agree, I don’t know how anyone sleeps with one of those! I’m sorry that you’re family aren’t supportive either
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I haven’t tried a neck collar because I can’t get past that it will do more damage and the feeling of being strangled. I need to at least try one.
I will caution to you what my PT said. From a mechanical standpoint do not rely on them for a huge amount of time due to a variety of reasons including atrophy. So you have to find what works. Few hours on few hours off. Or same time every day or at night etc.
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@Skatkat I’m dealing with exactly the same thing — I haven’t had surgery yet either. I have calcifications measuring 53 mm on the right and 40 mm on the left. I switch between using one and two pillows, but honestly, I think two pillows work better to help keep the neck more stable — especially if, like me, you can’t wear a cervical collar.
I’m not sure if there’s an ideal sleeping position, but I can only sleep on my sides. Maybe lying flat on your back looking up at the ceiling would help reduce styloid compression — but the problem is, it’s just so uncomfortable to stay like that, haha.
The cervical collar chokes me, and it puts my head into a chin tuck position, which actually makes things worse by compressing my jugular veins even more, since my styloids are pressing against my C1.
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here is the video I like to reference when it comes to chin tucks and why I refuse to do them even though every PT wants you to do them. The comments are interesting underneath it.
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This is exactly me, this is how my problems started. I had terrible lower back issues (L5/S1 discs) so I was lying down with just my head up while working on my laptop to try to stop the pain in my lower back. Obviously in this position I had an extreme chin tuck and I would spend quite a lot of the day like that. When I went to physio the first time they said do chin tucks (this was 3 years ago now) so I did them thinking that they knew best but obviously not because it made my symptoms a million times worse. I’ve not done a chin tuck since, they are the route of all evil for me. I’ve also never led down with just my head up since, I basically avoid tucking my chin at all costs now.
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I can see looking at those images that those sort of chin tucks would be difficult for those of us who had/ have IJV compression…I have in the past on here suggested the PT which very much helped my neck before surgery which were called chin tucks too, but these were different & were not pulling the chin back towards the spine, but were done laying flat & looking downwards, it helped stretch out the back of my neck & reduced the knots there… I will have to call them something else if I ever mention them again!
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I totally agree with you, Jules — I feel the same kind of relief in the back of my neck when doing that moderate chin tuck while looking down. I actually found a video of a girl doing it, but I think it’s probably better to do this movement while lying down, and to always respect your own anatomy — stop at the slightest pain or compression.
For example, the girl at left tucks her head way too far into her neck, in my opinion — and for those of us with Eagle syndrome, we’ll likely hit our limit much sooner due to restricted range of motion.
I also think that since the cervical vertebrae move backward during the motion, the styloid doesn’t end up hitting a fixed C1 like what you see in the right guy from @jugularEagle — it’s not the same type of movement at all.
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Great illustrative pictures & discussion, @gosu79. We’ve had a lot of members who’ve been prescribed variations on chin tucks & nearly everyone has had symptoms worsen. I would bet the majority were given the type shown in the left picture.
Oh crap,at least it doesnt surprise me cause calcified styloid is still there it’s just poking something else,when im doing the variation like the girl on the left symptoms like knots on my cervical back as jules said get better but my voice become hoarse I also feel a pressure-like pain in my face — it’s like the problem just shifts from one area to another actually
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I feel that too, it’s like I have to choose where I want to feel the pain/tightness, sometimes I think I’m getting somewhere and then realise I’ve just shifted the pain around. I always feel like the muscles are tense and when I release one another will just tense up in its place.
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Yes, I used to do mine laying down…I guess it will vary for everybody though depending on the angle of the styloids…
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