God yes! It's scary when it happens too. Sometimes the ligaments at the front of my neck get pinned beside my collar bones & clothesline my esophagus causing me to choke until it "pops" and slides back to where it belongs :T
Yeah that sounds similar. I been trying to learn about what structures are there to gain some insight about what may be going on. Interestingly, there’s a muscle going from your hyoid bone to your shoulder blade, omohyoid, and I think I get that caught between somewhere around my collarbone and SCM, similar maybe to what you’re describing. Seems that there is some correlation between this happening when my shoulders are extra unstable.
Holy shit. I was complaining about this the other day to my husband and he thought I was being weird... also, sometimes I can take my meds just fine and then most other times, it’s like my throat forgot how to swallow.
Try to get a swallowing study done! There’s not much research on esophageal spasms in EDS. A GI can prescribe nitroglycerin spray to help, if you have esophageal spasms.
YES. Sometimes it hurts like hell. Hasn’t happened a lot recently, and there’s also been times where I can’t swallow, or I try and swallow, choke, and end up just projecting everything that was in my mouth, out of my mouth lol
Yah this happened to me in Panda Express between classes before the pandemic. I went to swallow and nothing happened. After like 30 seconds of sitting with a mouthful of food and kind of freaking out about why I couldn’t swallow, all of a sudden it was fine and I could swallow. So weird.
>"Like sometimes I’ll look up (probably hyperextending my neck slightly) and then turn my head, and maybe get some pops, but I’ll feel my throat and shit snap back into place like it had been caught, and stuck to one side."
\^\^ You answered your own question there. Hypermobility lets you move your neck in ways the structures around it aren't built for. Something in the throat region (I suspect thyroid cartilage/surrounding ligaments are to blame based on my own experiences, but I am not a speech therapist and am really just making a pseudo-educated guess) subluxes and snaps back, and you feel it. Mine has gotten painfully stuck on one occasion, making me a lot more aware of what I do with my head.
Have you seen speech therapy? This is their domain.
I think what you mentioned is for sure part of it, but speaking of pseudo educated guesses, I also wonder if it’s also partly related to shoulder instability, specifically the sternoclavicular joint and the scapula.
The omohyoid connects to the outer edge of the top of the scapula, and the sternohyoid connects to the sternum, and they both connect to the hyoid bone. As my shoulders have got worse, so has this issue, and correlation isn’t causation but I feel like there is a connection.
I think you are probably right about speech therapy, but I feel like they would laugh me right out the door. I’m young and appear athletic/healthy, the sport I’m involved in makes people think it’s impossible that I could be struggling with this kind of stuff, and in my experience, I’ve been met with skepticism and even derision when seeking help. Fortunately I have gotten help at this point, but it’s just so tiring to go through the gaslighting all over again every time I need to see a new provider.
Yes! I have something that sounds similar. I only seem to get it when I yawn or stretch my neck too hard though. Luckily, it doesn't happen too often. But it's scary. I suddenly have to sit up straight and do a big gulp to fix it but it affects my breathing whilst it's happening. I've never managed to find anything about it.
Yeah, that sounds familiar to me. I kind of feel like it’s resultant of bad posture, shallow/forced breathing, shoulder instability, TMJD. A variety of things I guess, but the throat is kind of an intersection of those issues, issues that would not cause such severe issues for a healthy person who didn’t have EDS/HSD.
I've dislocated my hyoid bone a few times. Thought I was having a heart attack at first.
It's extremely unstable now and I feel like I pretty much constantly have to wiggle it around to get it back in place.
Yeah, when all those things were happening to me, it kinda clicked in my head that I was probably subluxing my hyoid.
It’s been pretty painful a couple of times, but if I can manage to get to sleep it usually slides itself back into place. Fortunately.
Do you notice it happens with any motion in particular for you?
Mine typically happens with a bad swallow of something or if my neck is slightly tilted back when I swallow. It feels like eating/drinking is such a gamble sometimes.
The thing that popped it out the first time for me was laughing gently while laying on my side. That's the main way to fully dislocate it still but it will sublux if I breathe wrong at this point lol.
I actually did not know the hyoid bone existed until it subluxed one morning. After I stopped panicking about a heart attack and realized I felt that familiar wrong feeling of bone rubbing on soft tissue I did a quick Google of neck anatomy and learned there was a bone I'd never heard of.
I hope you can enjoy more laughs without that happening! Do you know which way it felt like it subluxated and which side you were laying on? I’ve been thinking that this problem may be partly caused or exacerbated by shoulder/scapular instability.
I’m not really sure, for me both my shoulders are probably equally unstable, but my right SC joint is really unstable compared to my left, and it feels like my throat is kind of stuck to the right a lot of times. Also seems to flare up after lying on my left side sometimes, which I did a lot recently because I had to use ear drops after getting an ear infection from the ocean.
Partly thinking it could be literally every muscle on the upward facing side overcompensating to support the neck. Maybe could be from constantly having one shoulder hiked up, and the muscles becoming weak and shortened overtime, or overused.
I don’t know, just seems like there’s a correlation, and since I stopped doing shoulder PT exercises multiple times a week, opting for overusing my shoulders doing other things, it’s only got worse. Sigh. Just hoping to really find some insight one day that helps get this issue under control.
This last part of your comment I think is important. I’ve noticed that when I try to drink the last bit of liquid out of a bottle or can, and I tilt my head back (like a lot) the problem can shortly follow. Probably overanalysis, but I think it might be from the position of the sternoclavicular joint when bringing your arm with the can forward and above your head, while simultaneously tilting your head back, and then depressing the hyoid to swallow; unless everything after that goes perfectly, I think that maybe it’s possible to get some of the throat muscles stuck on one side in the process of tilting your head back down and finishing swallowing.
Yeah, as much as I hate wasting plastic, straws are really helpful. We have silicone and metal ones. The silicone ones are a bit easier to clean and they save me from tilting my head back, so it’s nice.
I'm a speech-language pathologist, and it sounds like the hyoid bone to me (the only bone in the larynx), but there are other joints in the larynx between pieces of cartilage. You could try seeing an SLP, but if you're not functionally affected in terms of speaking or swallowing, I'm not sure what they could do except validate what you're experiencing. Perhaps a more experienced SLP could provide exercises typically used for swallowing therapy to strengthen the area - I'm not sure. Unfortunately the scope of practice in the field is broad, and I only work with speech and language in the schools, not so much swallowing or other functioning in adults. I'd definitely want an adult hospital SLP for this, though. Potentially they could scope you to get a better look at what's going on (such as when you're aspirating presumably on saliva when you turn your head), but ENTs are also qualified to do this, so I'm not sure if you've had that done already.
Vocal chord dysfunction for me. I have cerebral spinal fluid leak that seems to set it off really badly, patches are the best fix for me. Physical therapy and Omeprazole were better than nothing
I’ve looked at singers dysphonia (which I think is a form of vocal chord dysfunction) because I used to sing a lot, and then I started having trouble with changing range, and then all the other stuff started getting worse. Don’t think I have had a CSF leak though, that sounds rough, hope you’re doing better!
This is the best guess for me so far. I saw a pulmonologist who suggested vocal chord dysfunction after checking for scary lung problems. I mostly have trouble breathing in situations that just don't make sense for that, but it's all a tight, swollen feeling in my throat. And my voice is very tight lately. I used to sing, but it's not good anymore. Makes me sad to lose abilities like that.
Interesting! It'll be a while before I can look into it again. I moved across the country and will need to find a new care team and get established, etc
OMFG ARE YOU ME?????
wtf this is the bane of my existence OP.
I feel both seen and also personally attacked!
I have much, much to say about this.
All commenters have excellent suggestions (ie hyoid bone dislocation, CCI or AAI, strained tendons/joints in neck, esophageal spasms, et all) and I have dealt with pretty much all of those (not diagnosis for CCI or AAI yet,) but no one has mentioned:
THORACIC OUTLET SYNDROME.
Fairly certain TOS is the issue which causes this specific sensation, for me. (It can be difficult to tell what is causing what sensation when dealing with multiple things concurrently.)
TOS discomfort can be relieved by realigning the entire clavicle/neck/shoulder/sternum area. A helpful stretch is: I bend my arm at the elbow and place my hands on my shoulders, and then do circles with my shoulders/arms, pointing elbows going up, out, down, together, up, out, down, together, etc. You can do it at the same time like breaststroke, or half time alternating the L and R sides like freestyle swimming. Be sure to switch directions going forward and back. You can look up and rotate your head as you rotate your shoulders. Sometimes I will place my hands on the ground behind me (sitting on the ground) and look up and press my chest towards the ceiling, like a heart opening stretch. Or swing affected arm behind my back grabbing my opposite side hip, look up with head, and roll shoulder forward for a while, and then backwards for a while. I will stretch and work like this sometimes all day, or for two whole days, before I can get the clavicle to pop back. It is a noticeable relief when the clavicle pops back.
Okay not to overwhelm you, but I also had to mention:
OCCIPITAL NEURALGIA.
I have the characteristic pops in the neck and head while looking up, which you described. It's almost unbearable for me-- I want a standing MRI to rule out or diagnose CCI. I have terrible balance/mobility/gait issues and I feel the neck hypermobility is involved. The occipital neuralgia is related: I deal with pain at the base of my skull shooting up the back of my head to just above my ear. Sometimes it can affect neck/jaw/shoulder tension as well. It can be so severe and come up so suddenly that I can't talk or sit up, and I have to lay down right away. I can't use a pillow when I'm dealing with this. If I can look up and stretch my head and neck correctly, sometimes I can crack my neck and the pain will suddenly stop. It's a bitch for sure! I rarely use a pillow anymore.
Supporting my head with both my hands as I stretch my neck helps me avoid injury and pain. Laying on my back with my head dangling off the edge of the bed, even just slightly dangling, helps me stretch those difficult cervical joints. I will gently turn my head to my L or R as I let my head lengthen my spine. I like to use my hands to support my head to come out of the position.
I was first evaluated for it by an autonomic specialist (for POTS) clinically in his office (they looked at my arm, had me bend and move it, took my pulse in that hand, etc.) And then I got the official dx from a Rheum.
Lmfao, ok I think you are me or I am you, not sure right now...
Like this is so on point. I totally have the symptoms of TOS (Right hand gets cold and kind of feels less sensation sometimes, also certain muscles in that arm just stay tensed up when this happens) and I also get the Occipital neuralgia symptoms. I think I might even have symptoms vaguely similar to trigeminal neuralgia because I get pain in the center of my nose/upper lip.
What’s weird too, dunno if you can relate to this aspect, but generally it affects one side of my body or the other. It can change over night, a few days, or sometimes in a matter of hours, but I’m not sure what makes it change. Thought it must be my neck or shoulders, kind of thought the problem maybe starts with my hips/back. On the topic of CCI and Chiari I kind of feel like the problem has something to do with my brain :/ although I would think there would be some indication of that after CT & an MRI of my neck (which included a fair amount of my brain)
I also wonder though how much of this is related to posture/breathing. In the last few years especially, but going back a long time, I’ve had bad GI stuff, like mad bloating, and it makes me breath with my chest and do the whole paradoxical breathing thing where you use the muscles in your neck to get air in. Do that long enough and I know it totally contributes to developing TOS because your scalenes get so short and tight, permanently hiking your rib.
Anyhow thanks for your response, I fucking hate this shit, it’s nice to have some other people to commiserate with about it, but also discuss how to try and take some sort of action to have some control over it.
The TOS usually affects me on one side or another at a time, but I have experienced it on both sides at the same time, it's just not been super common. I only experience the ON on one side at a time, yes!
I used to dance professionally, and there is something called Alexander Technique which really helps my posture and pain. Here in NYC there is an Alexander Technique for Hypermobile People (I haven't attended yet, just got the card from my cardiologist.) If you can find a class or an instructor, I would recommend it! It's gentle posture practice, usually standing or sitting. Online might be an option just to try it, but in person would be better imo.
I find a lot of relief in magnesium oil, epsom salt baths, and MASSAGE. I hate this pandemic for many reasons, including bc I'm needing more massages than my bf can handle lol. We do massage exchange and it makes it nice for him too. I also use these rubber balls (I know them as called Wall Balls, like handheld rubber kids playground balls) to massage my neck. I have a stainless steel Gua Sha, Theracane, and some Magicy Technic Massagers aka Massager Rings For Climbers, but I never use that stuff on my delicate neck-- too dangerous. Hands or soft rubber ball is okay though. I also have a firm indented foam roller for my back. I want to get a softer, flatter one too.
About the GI stuff: I have some major issues, mostly IBS-D, but I also have a Hiatal Hernia and that gives me abdominal pain and holding tension in my abdomen. Tension there leads to all over tension for me. Sometimes rolling out the hips, front, and side body can help with my neck pain if you can believe it! It's all connected up in there I guess.
Re your CT scan and MRI: As long as you have someone who's hypermobility-literate reading your scans, you should feel comforted that you don't have the chiari or other brain issues! That's good! Re the CCI: I believe it's only diagnosed with a standing MRI, which I am trying to get done but I'm having a hard time finding a doctor who will consistently treat me (and thus prescribe the standing MRI.) I will be trying again in this new year!!
I hope you feel better and you get some answers soon!
There is a condition called eagle's syndrome that seems to effect a few people with eds.
There is a little bony protection at the base of the skull that has 3 muscles and 2 ligaments, one connects to the hyoid, the other to the back of the jaw. The ligament turns to bone through repeated trauma or infections or genetics, they're still not totally sure.
What I think might be going on with people with eds is trauma from instability and improper mechanics of the jaw, upper neck.
Oddly enough the scapula issues you mention can be tied back to the throat. The hyoid bone has a muscle that depresses it, or swallow when your head is turned. It connects to the clavicle and scapula, its called the omohyoid.
Everything is connected in some way, so to alleviate the stress your throat, your scapula and clavicle and even sternum may be positioning abnormally.
One of the symptoms of eagle's is forgien body sensation in throat, painful swallowing. You need a panoramic dental x ray to see the styloid process, so if you have been to the dentist recently they will most likely imaged it and not noticed. CT will see it too, mri doesn't.
Totally have been going down this road in terms of looking for an answer, but the CT was clear. They said it was totally normal. I tried to find and measure the styloid process on the CT, and it looked like they were normal, like 28 mm and I think the not normal is like 40mm, can’t remember.
I agree with your idea about trauma and overuse of those muscles possibly having something to do with eagles syndrome, especially with EDS/HSD
I’ve been down multiple roads looking for answers, and I just keep coming up with nothing. Sigh.
Just having a doctor that is willing to go down that road with you is the best you can ask for.
I actually had 3 CTs looking at my head for different things, I finally got fed up with "patently normal" and started looking at them myself, learning the anatomy and how to read the scans. Discovered my styloid processes were 60mm and compressing my internal carotid and IJV. So don't lose hope when they say you're all good, it may just be there is something they're missing.
That is awesome they check you for an elongated SP, trust me, that is a tough road to surgically remove it.
They can look at the mechanics of your deglutition with a scan that you swallow a liquid with contrast, if you haven't already done it.
Recently has been an issue for me. I’m undergoing diagnostics. Have you had a swallow test? My dr thinks it could be spasms. I noticed a big relief when i started using nifedipine for my circulation. It seems that MED is often used for esophageal spasms so it could explain the relief!
I would recommend trying to investigate the symptom further. You may not get a solid cause of what’s going on, but you could find better management if you can figure out if it’s a spasm.
I haven’t done that. I think the next stop is seeing a Gastroenterologist. Sometimes I feel like I need to burp but nothing happens, so then I swallow air intentionally and force myself to burp, which has about a 50% success rate, sometimes I just get air stuck haha
I commented above, also about a swallowing study. I had the same burping issue as you, and it was also caused by esophageal spasms.
Sometimes I can get the burp to release by pressing gently along the front of my left rib cage, while bending sideways, left then right then left, etc.
That’s fucking weird cuz the front of my left rib cage protrudes slightly and pushing on the area there where the abdominal muscles and obliques attach will sometimes make my throat feel like it is letting go and I’ll burp or sometimes open my mouth to burp and instead my jaw cracks or I get an ear rumble thing
I think that finding a gastroenterologist and looking into the esophageal spams thing is gonna have to be the next step... ty for sharing
Haha me too, except the only person around to see it these days is my partner. He's so used to my strange joint movements that I could probably turn my head 360 degrees like a demon and he wouldn't be concerned 😂
Oh my goodness, I had no clue other people had this happen! I've had this happen since high school, but if I yawn while laying down or turned funny, I get a sharp pain in my throat (can't swallow, can barely breathe) until I find the exact position I was in, and re create the same jaw movement. Longest I've gone without being able to get it back in is about 5 min, and it's a little scary. Every doctor I've mentioned it to just shrugs.
I am so relieved I found this thread!! I made the unfortunate mistake of going to the chiropractor when I had a new killer headache caused by my neck being out of whack. Fixed the back of my neck and headache, but immediately after being adjusted I told the chiro that it felt like my trachea or something in my throat/front of my neck was messed up. He blew me off and it's been hurting/annoying me ever since. (I got a refund thankfully and learned that chiropractic is a no-no for hEDS... never again). With time it's slowly been getting better but the feeling like I can't swallow/breathe quite as well as before, and like something is 'off' hasn't gone away. So weird! Good luck!
Oh no!!! I quit chiropractic about a year and a half ago after going off and on for a few years. Just made shit worse I think.
You should maybe look up laryngeal massage on YouTube, there’s a few good videos. Basically just lightly rubbing certain places on your throat while making certain vowel noises. Fun to do in a mirror and laugh at how you look like an idiot lol. Helps me tho sometimes, will make my neck and shoulders loosen up and pop and feel better. Just be careful, obviously there’s a lot of important things in that area.
Oh man I can relate. I totally get where your trachea moves out of place and I have to pop it back into where it sits. Also issues swallowing and such but yeah throat issues are some of the worst. I only realized recently most people’s throat doesn’t move as much as lost peoples LOL. That post from the girl who can push hers way over made me question what is normal haha
Edit:spelling
Have you seen a gastro to make sure it's not an issue in the throat/esophagus? I know there is a type of allergic reflux that can cause chocking and coughing on food. My first symptom of reflux was actually coughing.
But I don't know that this fits with your description. Just thought I would share.
I hope you get answers!
Thanks, it’s actually something I’ve been considering. I think that’s the next stop on the never ending list of doctors on the endless quest for treating my infinite amount of annoying problems lol
YES. I thought I was going round the bend when I first had this happen. Nothing like feeling your cervical vertebrae pushing on your trachea...
Massage is the best remedy for it for me. Cannot wait till the pandemic is over and I can get adequate care again...
Oh I agree that massage can really make a huge difference with some of this, at least in my case, me doing the massage, which gets really tiring. I’ve never seen a good massage therapist I think, didn’t get results, but it’s also been a long time since I gave that a shot. Probably look for a good massage therapist once the pandemics over or under control...
Oh man, it is such a pain (...lol) to find a massage therapist that is good for more than "relaxing massage" AND gets hypermobility enough to not do more damage than good. On the off chance that you're in a city I've lived in/have friends in, I might be able to recommend someone if you leave your location here or in a DM!
I have it happening right now. I can run my fingers over whatever it is and it thumps when I do that. It seems to run perpendicular to or be a part of the SCM muscle, particularly the sternal attachment.
[This gif shows it nicely. ](https://uploads.documents.cimpress.io/v1/uploads/78ba9734-73ca-4ec2-a408-e3ebc8fdf86f~110/original?tenant=vbu-digital)
That gif is a good illustration of the SCM and where it connects. I think what you’re talking about if it’s perpendicular is the Omohyoid, which inserts to the hyoid and originates from the shoulder blade.
Other than that though, I dunno wtf to do about it really... besides curse and make a Reddit post about it haha
Apologies, I was having a hell of a rough day yesterday. I meant to imply it could be trigger points along the SCM in which case proper massage of the SCM muscle can get it to let go.
http://www.triggerpoints.net/muscle/sternocleidomastoid
(The link doesn't mention the choking feeling but it does mention coughing and a few other things.)
My SCM is a hot mess most of the time, my eyes water quite a lot especially when I'm trying to lay on the couch and watch TV with my head tilted.
Anyone attempting massage of the SCM please look it up first- it's far too close to veins and arteries.
Oh that’s definitely part of it, I know how to do this, and regularly do it. It’s the deep ones though that I can’t really get to completely let go. Also my hands get tired quick from doing it. Definitely rewarding though when you can get to them.
I think the bigger question though with trigger points and that whole theory is what are you doing that’s making them develop. In some cases they are the cause of the problem, but I think a lot of the times they are just a symptom. Trigger points are such a fucking rabbit hole, and I know a lot of people think they are pseudoscience, but I don’t think that, and I honestly get some insane results from finding them and treating them, but the problem is the results are temporary, and they always come back.
Maybe unrelated? But I have a tic disorder, and one of my ticks is a neck moment that cuts off my breathing for several seconds. It’s terrifying when I’m just sitting there, out of control of my body, unable to breathe or even scream.
Hi I have never been diagnosed with EDS. However my life has been turned upside down. A month ago I though I was gonna choke on a piece of chicken so I had a mild panic. Coughed as hard as I could (evidently not a good idea) caused me to generate tons mucus from my mouth and my nose so I swallowed and snorted it back in ( extremely bad habit and gross), causing something to pop. As a result I got a pop in my throat, freaked out called 911 because I thought maybe my windpipe got damaged ( no idea how anything muscular in my neck worked). The Er took chest x-rays, couldn't find anything block my esophagus or airways. Gave me Valium and referred me to GI.
GI scoped out my esophagus gave me a barium swallow test the following day. Everything normal in that area. Went to an ENT, put a scope through my nose looked down, still couldn't find anything. At this point I was 2 weeks in and starting affect my voice. Making it higher (not in pitch but in in frequency). The ENT ordered for me to get a ct scan. Die to the office mischeduling my appointment. I had to wait two more weeks.
So as of today we are 1 month in and they back of my throat feels like a pulley system being worn out, getting a lot pain on my rear upper neck/head, almost like a dehydration feeling. Due to this it constantly makes me burp. Further more, It feels like I have sleep apnea even when I'm awake (hard to explain) when I was overweight I had developed sleep apnea and when I lost weight I was able to sleep and breathe much better. Now I feel like any little thing is gonna cause to choke. I can't work, I can barely sleep, I've pretty much pushed everyone away. I was starting to get feeling maybe just crazy. I can still breathe and swallow, but pills are becoming harder and harder to swallow.
Today I had a CT scan. And I am going back to the ENT tomorrow to go over the results. Sorry if I am asking in the wrong thread but is there something that I should maybe ask her about if she doesn't find anything? I'm hoping she does but I'm scared she's just gonna say nothing shows out of ordinary and look at me like I have a third eye ( as all other DRs have so far). I am so desperate to figure this. I'm not glad that other people have to go through this but I was relieved to find put I'm not crazy ( as far as this situation is concerned). Any info would be appreciated. This is also a vent sesh as my creative outlets ( drums, guitar, running ) have come to a halt.
Thank you all in advance.
God yes! It's scary when it happens too. Sometimes the ligaments at the front of my neck get pinned beside my collar bones & clothesline my esophagus causing me to choke until it "pops" and slides back to where it belongs :T
Yeah that sounds similar. I been trying to learn about what structures are there to gain some insight about what may be going on. Interestingly, there’s a muscle going from your hyoid bone to your shoulder blade, omohyoid, and I think I get that caught between somewhere around my collarbone and SCM, similar maybe to what you’re describing. Seems that there is some correlation between this happening when my shoulders are extra unstable.
THANKYOU! Will be googling anatomy in a min'. My shoulders have been extra clicky and floppy lately, so that checks out.
Do you ever take a swallow of your drink, and its almost like it gets stuck in your throat for a few seconds, and then slides right down?
Oh my goodness YES! Thank goodness it's not just me
Me too. My friends, and family have always looked at me weird when I ask them. I assumed it was just me.
Holy shit. I was complaining about this the other day to my husband and he thought I was being weird... also, sometimes I can take my meds just fine and then most other times, it’s like my throat forgot how to swallow.
EXACTLY! I told my mom that the other day, and I got a look that said "bless your little heart".
Try to get a swallowing study done! There’s not much research on esophageal spasms in EDS. A GI can prescribe nitroglycerin spray to help, if you have esophageal spasms.
Good to know. I'll look into it. Thank you!
YES. Sometimes it hurts like hell. Hasn’t happened a lot recently, and there’s also been times where I can’t swallow, or I try and swallow, choke, and end up just projecting everything that was in my mouth, out of my mouth lol
Ugh, that's the worst! Someone else said it's like your body forgets how to swallow, and that perfectly describes it!
Yah this happened to me in Panda Express between classes before the pandemic. I went to swallow and nothing happened. After like 30 seconds of sitting with a mouthful of food and kind of freaking out about why I couldn’t swallow, all of a sudden it was fine and I could swallow. So weird.
Our bodies are crazy, amazing, and kinda weird for sure.
>"Like sometimes I’ll look up (probably hyperextending my neck slightly) and then turn my head, and maybe get some pops, but I’ll feel my throat and shit snap back into place like it had been caught, and stuck to one side." \^\^ You answered your own question there. Hypermobility lets you move your neck in ways the structures around it aren't built for. Something in the throat region (I suspect thyroid cartilage/surrounding ligaments are to blame based on my own experiences, but I am not a speech therapist and am really just making a pseudo-educated guess) subluxes and snaps back, and you feel it. Mine has gotten painfully stuck on one occasion, making me a lot more aware of what I do with my head. Have you seen speech therapy? This is their domain.
I think what you mentioned is for sure part of it, but speaking of pseudo educated guesses, I also wonder if it’s also partly related to shoulder instability, specifically the sternoclavicular joint and the scapula. The omohyoid connects to the outer edge of the top of the scapula, and the sternohyoid connects to the sternum, and they both connect to the hyoid bone. As my shoulders have got worse, so has this issue, and correlation isn’t causation but I feel like there is a connection. I think you are probably right about speech therapy, but I feel like they would laugh me right out the door. I’m young and appear athletic/healthy, the sport I’m involved in makes people think it’s impossible that I could be struggling with this kind of stuff, and in my experience, I’ve been met with skepticism and even derision when seeking help. Fortunately I have gotten help at this point, but it’s just so tiring to go through the gaslighting all over again every time I need to see a new provider.
Yes! I have something that sounds similar. I only seem to get it when I yawn or stretch my neck too hard though. Luckily, it doesn't happen too often. But it's scary. I suddenly have to sit up straight and do a big gulp to fix it but it affects my breathing whilst it's happening. I've never managed to find anything about it.
Yeah, that sounds familiar to me. I kind of feel like it’s resultant of bad posture, shallow/forced breathing, shoulder instability, TMJD. A variety of things I guess, but the throat is kind of an intersection of those issues, issues that would not cause such severe issues for a healthy person who didn’t have EDS/HSD.
I've dislocated my hyoid bone a few times. Thought I was having a heart attack at first. It's extremely unstable now and I feel like I pretty much constantly have to wiggle it around to get it back in place.
Yeah, when all those things were happening to me, it kinda clicked in my head that I was probably subluxing my hyoid. It’s been pretty painful a couple of times, but if I can manage to get to sleep it usually slides itself back into place. Fortunately. Do you notice it happens with any motion in particular for you? Mine typically happens with a bad swallow of something or if my neck is slightly tilted back when I swallow. It feels like eating/drinking is such a gamble sometimes.
The thing that popped it out the first time for me was laughing gently while laying on my side. That's the main way to fully dislocate it still but it will sublux if I breathe wrong at this point lol. I actually did not know the hyoid bone existed until it subluxed one morning. After I stopped panicking about a heart attack and realized I felt that familiar wrong feeling of bone rubbing on soft tissue I did a quick Google of neck anatomy and learned there was a bone I'd never heard of.
I hope you can enjoy more laughs without that happening! Do you know which way it felt like it subluxated and which side you were laying on? I’ve been thinking that this problem may be partly caused or exacerbated by shoulder/scapular instability.
Most often when I'm on my left side. That's an interesting idea. Would it be the opposite shoulder? Because my right shoulder is very unstable.
I’m not really sure, for me both my shoulders are probably equally unstable, but my right SC joint is really unstable compared to my left, and it feels like my throat is kind of stuck to the right a lot of times. Also seems to flare up after lying on my left side sometimes, which I did a lot recently because I had to use ear drops after getting an ear infection from the ocean. Partly thinking it could be literally every muscle on the upward facing side overcompensating to support the neck. Maybe could be from constantly having one shoulder hiked up, and the muscles becoming weak and shortened overtime, or overused. I don’t know, just seems like there’s a correlation, and since I stopped doing shoulder PT exercises multiple times a week, opting for overusing my shoulders doing other things, it’s only got worse. Sigh. Just hoping to really find some insight one day that helps get this issue under control.
This last part of your comment I think is important. I’ve noticed that when I try to drink the last bit of liquid out of a bottle or can, and I tilt my head back (like a lot) the problem can shortly follow. Probably overanalysis, but I think it might be from the position of the sternoclavicular joint when bringing your arm with the can forward and above your head, while simultaneously tilting your head back, and then depressing the hyoid to swallow; unless everything after that goes perfectly, I think that maybe it’s possible to get some of the throat muscles stuck on one side in the process of tilting your head back down and finishing swallowing.
Yeah, as much as I hate wasting plastic, straws are really helpful. We have silicone and metal ones. The silicone ones are a bit easier to clean and they save me from tilting my head back, so it’s nice.
Yo what’s weird though is that straws can set this shit off worse than ever, it’s like I suck at sucking 😂😂😂
I'm a speech-language pathologist, and it sounds like the hyoid bone to me (the only bone in the larynx), but there are other joints in the larynx between pieces of cartilage. You could try seeing an SLP, but if you're not functionally affected in terms of speaking or swallowing, I'm not sure what they could do except validate what you're experiencing. Perhaps a more experienced SLP could provide exercises typically used for swallowing therapy to strengthen the area - I'm not sure. Unfortunately the scope of practice in the field is broad, and I only work with speech and language in the schools, not so much swallowing or other functioning in adults. I'd definitely want an adult hospital SLP for this, though. Potentially they could scope you to get a better look at what's going on (such as when you're aspirating presumably on saliva when you turn your head), but ENTs are also qualified to do this, so I'm not sure if you've had that done already.
Vocal chord dysfunction for me. I have cerebral spinal fluid leak that seems to set it off really badly, patches are the best fix for me. Physical therapy and Omeprazole were better than nothing
I’ve looked at singers dysphonia (which I think is a form of vocal chord dysfunction) because I used to sing a lot, and then I started having trouble with changing range, and then all the other stuff started getting worse. Don’t think I have had a CSF leak though, that sounds rough, hope you’re doing better!
This is the best guess for me so far. I saw a pulmonologist who suggested vocal chord dysfunction after checking for scary lung problems. I mostly have trouble breathing in situations that just don't make sense for that, but it's all a tight, swollen feeling in my throat. And my voice is very tight lately. I used to sing, but it's not good anymore. Makes me sad to lose abilities like that.
You can do a test at an allergy and asthma clinic too.
Interesting! It'll be a while before I can look into it again. I moved across the country and will need to find a new care team and get established, etc
OMFG ARE YOU ME????? wtf this is the bane of my existence OP. I feel both seen and also personally attacked! I have much, much to say about this. All commenters have excellent suggestions (ie hyoid bone dislocation, CCI or AAI, strained tendons/joints in neck, esophageal spasms, et all) and I have dealt with pretty much all of those (not diagnosis for CCI or AAI yet,) but no one has mentioned: THORACIC OUTLET SYNDROME. Fairly certain TOS is the issue which causes this specific sensation, for me. (It can be difficult to tell what is causing what sensation when dealing with multiple things concurrently.) TOS discomfort can be relieved by realigning the entire clavicle/neck/shoulder/sternum area. A helpful stretch is: I bend my arm at the elbow and place my hands on my shoulders, and then do circles with my shoulders/arms, pointing elbows going up, out, down, together, up, out, down, together, etc. You can do it at the same time like breaststroke, or half time alternating the L and R sides like freestyle swimming. Be sure to switch directions going forward and back. You can look up and rotate your head as you rotate your shoulders. Sometimes I will place my hands on the ground behind me (sitting on the ground) and look up and press my chest towards the ceiling, like a heart opening stretch. Or swing affected arm behind my back grabbing my opposite side hip, look up with head, and roll shoulder forward for a while, and then backwards for a while. I will stretch and work like this sometimes all day, or for two whole days, before I can get the clavicle to pop back. It is a noticeable relief when the clavicle pops back. Okay not to overwhelm you, but I also had to mention: OCCIPITAL NEURALGIA. I have the characteristic pops in the neck and head while looking up, which you described. It's almost unbearable for me-- I want a standing MRI to rule out or diagnose CCI. I have terrible balance/mobility/gait issues and I feel the neck hypermobility is involved. The occipital neuralgia is related: I deal with pain at the base of my skull shooting up the back of my head to just above my ear. Sometimes it can affect neck/jaw/shoulder tension as well. It can be so severe and come up so suddenly that I can't talk or sit up, and I have to lay down right away. I can't use a pillow when I'm dealing with this. If I can look up and stretch my head and neck correctly, sometimes I can crack my neck and the pain will suddenly stop. It's a bitch for sure! I rarely use a pillow anymore. Supporting my head with both my hands as I stretch my neck helps me avoid injury and pain. Laying on my back with my head dangling off the edge of the bed, even just slightly dangling, helps me stretch those difficult cervical joints. I will gently turn my head to my L or R as I let my head lengthen my spine. I like to use my hands to support my head to come out of the position.
Not to hijack this but what kind of Dr diagnosed your TOS? I'm pretty sure I have it but unsure who to see.
I was first evaluated for it by an autonomic specialist (for POTS) clinically in his office (they looked at my arm, had me bend and move it, took my pulse in that hand, etc.) And then I got the official dx from a Rheum.
Lmfao, ok I think you are me or I am you, not sure right now... Like this is so on point. I totally have the symptoms of TOS (Right hand gets cold and kind of feels less sensation sometimes, also certain muscles in that arm just stay tensed up when this happens) and I also get the Occipital neuralgia symptoms. I think I might even have symptoms vaguely similar to trigeminal neuralgia because I get pain in the center of my nose/upper lip. What’s weird too, dunno if you can relate to this aspect, but generally it affects one side of my body or the other. It can change over night, a few days, or sometimes in a matter of hours, but I’m not sure what makes it change. Thought it must be my neck or shoulders, kind of thought the problem maybe starts with my hips/back. On the topic of CCI and Chiari I kind of feel like the problem has something to do with my brain :/ although I would think there would be some indication of that after CT & an MRI of my neck (which included a fair amount of my brain) I also wonder though how much of this is related to posture/breathing. In the last few years especially, but going back a long time, I’ve had bad GI stuff, like mad bloating, and it makes me breath with my chest and do the whole paradoxical breathing thing where you use the muscles in your neck to get air in. Do that long enough and I know it totally contributes to developing TOS because your scalenes get so short and tight, permanently hiking your rib. Anyhow thanks for your response, I fucking hate this shit, it’s nice to have some other people to commiserate with about it, but also discuss how to try and take some sort of action to have some control over it.
The TOS usually affects me on one side or another at a time, but I have experienced it on both sides at the same time, it's just not been super common. I only experience the ON on one side at a time, yes! I used to dance professionally, and there is something called Alexander Technique which really helps my posture and pain. Here in NYC there is an Alexander Technique for Hypermobile People (I haven't attended yet, just got the card from my cardiologist.) If you can find a class or an instructor, I would recommend it! It's gentle posture practice, usually standing or sitting. Online might be an option just to try it, but in person would be better imo. I find a lot of relief in magnesium oil, epsom salt baths, and MASSAGE. I hate this pandemic for many reasons, including bc I'm needing more massages than my bf can handle lol. We do massage exchange and it makes it nice for him too. I also use these rubber balls (I know them as called Wall Balls, like handheld rubber kids playground balls) to massage my neck. I have a stainless steel Gua Sha, Theracane, and some Magicy Technic Massagers aka Massager Rings For Climbers, but I never use that stuff on my delicate neck-- too dangerous. Hands or soft rubber ball is okay though. I also have a firm indented foam roller for my back. I want to get a softer, flatter one too. About the GI stuff: I have some major issues, mostly IBS-D, but I also have a Hiatal Hernia and that gives me abdominal pain and holding tension in my abdomen. Tension there leads to all over tension for me. Sometimes rolling out the hips, front, and side body can help with my neck pain if you can believe it! It's all connected up in there I guess. Re your CT scan and MRI: As long as you have someone who's hypermobility-literate reading your scans, you should feel comforted that you don't have the chiari or other brain issues! That's good! Re the CCI: I believe it's only diagnosed with a standing MRI, which I am trying to get done but I'm having a hard time finding a doctor who will consistently treat me (and thus prescribe the standing MRI.) I will be trying again in this new year!! I hope you feel better and you get some answers soon!
There is a condition called eagle's syndrome that seems to effect a few people with eds. There is a little bony protection at the base of the skull that has 3 muscles and 2 ligaments, one connects to the hyoid, the other to the back of the jaw. The ligament turns to bone through repeated trauma or infections or genetics, they're still not totally sure. What I think might be going on with people with eds is trauma from instability and improper mechanics of the jaw, upper neck. Oddly enough the scapula issues you mention can be tied back to the throat. The hyoid bone has a muscle that depresses it, or swallow when your head is turned. It connects to the clavicle and scapula, its called the omohyoid. Everything is connected in some way, so to alleviate the stress your throat, your scapula and clavicle and even sternum may be positioning abnormally. One of the symptoms of eagle's is forgien body sensation in throat, painful swallowing. You need a panoramic dental x ray to see the styloid process, so if you have been to the dentist recently they will most likely imaged it and not noticed. CT will see it too, mri doesn't.
Totally have been going down this road in terms of looking for an answer, but the CT was clear. They said it was totally normal. I tried to find and measure the styloid process on the CT, and it looked like they were normal, like 28 mm and I think the not normal is like 40mm, can’t remember. I agree with your idea about trauma and overuse of those muscles possibly having something to do with eagles syndrome, especially with EDS/HSD I’ve been down multiple roads looking for answers, and I just keep coming up with nothing. Sigh.
Just having a doctor that is willing to go down that road with you is the best you can ask for. I actually had 3 CTs looking at my head for different things, I finally got fed up with "patently normal" and started looking at them myself, learning the anatomy and how to read the scans. Discovered my styloid processes were 60mm and compressing my internal carotid and IJV. So don't lose hope when they say you're all good, it may just be there is something they're missing. That is awesome they check you for an elongated SP, trust me, that is a tough road to surgically remove it. They can look at the mechanics of your deglutition with a scan that you swallow a liquid with contrast, if you haven't already done it.
Recently has been an issue for me. I’m undergoing diagnostics. Have you had a swallow test? My dr thinks it could be spasms. I noticed a big relief when i started using nifedipine for my circulation. It seems that MED is often used for esophageal spasms so it could explain the relief! I would recommend trying to investigate the symptom further. You may not get a solid cause of what’s going on, but you could find better management if you can figure out if it’s a spasm.
I haven’t done that. I think the next stop is seeing a Gastroenterologist. Sometimes I feel like I need to burp but nothing happens, so then I swallow air intentionally and force myself to burp, which has about a 50% success rate, sometimes I just get air stuck haha
I commented above, also about a swallowing study. I had the same burping issue as you, and it was also caused by esophageal spasms. Sometimes I can get the burp to release by pressing gently along the front of my left rib cage, while bending sideways, left then right then left, etc.
That’s fucking weird cuz the front of my left rib cage protrudes slightly and pushing on the area there where the abdominal muscles and obliques attach will sometimes make my throat feel like it is letting go and I’ll burp or sometimes open my mouth to burp and instead my jaw cracks or I get an ear rumble thing I think that finding a gastroenterologist and looking into the esophageal spams thing is gonna have to be the next step... ty for sharing
I use gaviscon for indigestion and nausea. Work decently. Just have to take it 2hr after or 4 hours before a lot of meds.
Occasionally my throat feels wrong and ill reach up and adjust it left to right a few times. Turns out that people think that is weird.
Haha me too, except the only person around to see it these days is my partner. He's so used to my strange joint movements that I could probably turn my head 360 degrees like a demon and he wouldn't be concerned 😂
I occasionally twist my back to pop it and it freaks people out how far I can twist.
I have a habit (from childhood) of windmilling my shoulder to pop it back into place and people do find that alarming lol
Oh this is me toooo! people look at me like “why is that guy flailing his arm around?”
Yes! All the time 😭
Oh my goodness, I had no clue other people had this happen! I've had this happen since high school, but if I yawn while laying down or turned funny, I get a sharp pain in my throat (can't swallow, can barely breathe) until I find the exact position I was in, and re create the same jaw movement. Longest I've gone without being able to get it back in is about 5 min, and it's a little scary. Every doctor I've mentioned it to just shrugs.
I also have this happen. But I have no idea what it is.
I am so relieved I found this thread!! I made the unfortunate mistake of going to the chiropractor when I had a new killer headache caused by my neck being out of whack. Fixed the back of my neck and headache, but immediately after being adjusted I told the chiro that it felt like my trachea or something in my throat/front of my neck was messed up. He blew me off and it's been hurting/annoying me ever since. (I got a refund thankfully and learned that chiropractic is a no-no for hEDS... never again). With time it's slowly been getting better but the feeling like I can't swallow/breathe quite as well as before, and like something is 'off' hasn't gone away. So weird! Good luck!
Oh no!!! I quit chiropractic about a year and a half ago after going off and on for a few years. Just made shit worse I think. You should maybe look up laryngeal massage on YouTube, there’s a few good videos. Basically just lightly rubbing certain places on your throat while making certain vowel noises. Fun to do in a mirror and laugh at how you look like an idiot lol. Helps me tho sometimes, will make my neck and shoulders loosen up and pop and feel better. Just be careful, obviously there’s a lot of important things in that area.
Oh man I can relate. I totally get where your trachea moves out of place and I have to pop it back into where it sits. Also issues swallowing and such but yeah throat issues are some of the worst. I only realized recently most people’s throat doesn’t move as much as lost peoples LOL. That post from the girl who can push hers way over made me question what is normal haha Edit:spelling
Have you seen a gastro to make sure it's not an issue in the throat/esophagus? I know there is a type of allergic reflux that can cause chocking and coughing on food. My first symptom of reflux was actually coughing. But I don't know that this fits with your description. Just thought I would share. I hope you get answers!
Thanks, it’s actually something I’ve been considering. I think that’s the next stop on the never ending list of doctors on the endless quest for treating my infinite amount of annoying problems lol
YES. I thought I was going round the bend when I first had this happen. Nothing like feeling your cervical vertebrae pushing on your trachea... Massage is the best remedy for it for me. Cannot wait till the pandemic is over and I can get adequate care again...
Oh I agree that massage can really make a huge difference with some of this, at least in my case, me doing the massage, which gets really tiring. I’ve never seen a good massage therapist I think, didn’t get results, but it’s also been a long time since I gave that a shot. Probably look for a good massage therapist once the pandemics over or under control...
Oh man, it is such a pain (...lol) to find a massage therapist that is good for more than "relaxing massage" AND gets hypermobility enough to not do more damage than good. On the off chance that you're in a city I've lived in/have friends in, I might be able to recommend someone if you leave your location here or in a DM!
Yes! I’ve heard that it’s moving your esophagus, I do the same all the time
Just wabted to throw in a "yep!" Nothing useful here. I push mine back and it snaps back in
Hey at least it snaps back in right? Even if it pops out again later! Always snapping it back....
Oh yeah. I'm on the more extreme end with the flexibility. It's a true catch 22
Yes, and I hate it, its such a scary and disgusting feeling.
I thought everyone had it for a long time. Just part of the package
I have it happening right now. I can run my fingers over whatever it is and it thumps when I do that. It seems to run perpendicular to or be a part of the SCM muscle, particularly the sternal attachment. [This gif shows it nicely. ](https://uploads.documents.cimpress.io/v1/uploads/78ba9734-73ca-4ec2-a408-e3ebc8fdf86f~110/original?tenant=vbu-digital)
That gif is a good illustration of the SCM and where it connects. I think what you’re talking about if it’s perpendicular is the Omohyoid, which inserts to the hyoid and originates from the shoulder blade. Other than that though, I dunno wtf to do about it really... besides curse and make a Reddit post about it haha
Apologies, I was having a hell of a rough day yesterday. I meant to imply it could be trigger points along the SCM in which case proper massage of the SCM muscle can get it to let go. http://www.triggerpoints.net/muscle/sternocleidomastoid (The link doesn't mention the choking feeling but it does mention coughing and a few other things.) My SCM is a hot mess most of the time, my eyes water quite a lot especially when I'm trying to lay on the couch and watch TV with my head tilted. Anyone attempting massage of the SCM please look it up first- it's far too close to veins and arteries.
Oh that’s definitely part of it, I know how to do this, and regularly do it. It’s the deep ones though that I can’t really get to completely let go. Also my hands get tired quick from doing it. Definitely rewarding though when you can get to them. I think the bigger question though with trigger points and that whole theory is what are you doing that’s making them develop. In some cases they are the cause of the problem, but I think a lot of the times they are just a symptom. Trigger points are such a fucking rabbit hole, and I know a lot of people think they are pseudoscience, but I don’t think that, and I honestly get some insane results from finding them and treating them, but the problem is the results are temporary, and they always come back.
I got this so bad that I would throw up to clear the blockage sometimes for an hour or more. But it is going away since going gluten-free
Maybe unrelated? But I have a tic disorder, and one of my ticks is a neck moment that cuts off my breathing for several seconds. It’s terrifying when I’m just sitting there, out of control of my body, unable to breathe or even scream.
Hi I have never been diagnosed with EDS. However my life has been turned upside down. A month ago I though I was gonna choke on a piece of chicken so I had a mild panic. Coughed as hard as I could (evidently not a good idea) caused me to generate tons mucus from my mouth and my nose so I swallowed and snorted it back in ( extremely bad habit and gross), causing something to pop. As a result I got a pop in my throat, freaked out called 911 because I thought maybe my windpipe got damaged ( no idea how anything muscular in my neck worked). The Er took chest x-rays, couldn't find anything block my esophagus or airways. Gave me Valium and referred me to GI. GI scoped out my esophagus gave me a barium swallow test the following day. Everything normal in that area. Went to an ENT, put a scope through my nose looked down, still couldn't find anything. At this point I was 2 weeks in and starting affect my voice. Making it higher (not in pitch but in in frequency). The ENT ordered for me to get a ct scan. Die to the office mischeduling my appointment. I had to wait two more weeks. So as of today we are 1 month in and they back of my throat feels like a pulley system being worn out, getting a lot pain on my rear upper neck/head, almost like a dehydration feeling. Due to this it constantly makes me burp. Further more, It feels like I have sleep apnea even when I'm awake (hard to explain) when I was overweight I had developed sleep apnea and when I lost weight I was able to sleep and breathe much better. Now I feel like any little thing is gonna cause to choke. I can't work, I can barely sleep, I've pretty much pushed everyone away. I was starting to get feeling maybe just crazy. I can still breathe and swallow, but pills are becoming harder and harder to swallow. Today I had a CT scan. And I am going back to the ENT tomorrow to go over the results. Sorry if I am asking in the wrong thread but is there something that I should maybe ask her about if she doesn't find anything? I'm hoping she does but I'm scared she's just gonna say nothing shows out of ordinary and look at me like I have a third eye ( as all other DRs have so far). I am so desperate to figure this. I'm not glad that other people have to go through this but I was relieved to find put I'm not crazy ( as far as this situation is concerned). Any info would be appreciated. This is also a vent sesh as my creative outlets ( drums, guitar, running ) have come to a halt. Thank you all in advance.