Hi community. The choking and poking plus constant burning - grinding in throat, nausea, salivation, and teeth ache is intensIfying. It’s hard to eat. I asked for a FIESTA MRI this week and will show results tomorrow to a neurologist. The report mentioned “There may be vascular compression of the left glossopharyngeal nerve ( most of my symptoms are right sided ) possibly from the left posterior inferior cerebellar artery. Trace inflammatory ethmoid sinus mucosal thickening air -fluid level.Nasal septum deviation to the right.Concha bullosa of the left middle turbinate” Has any medicine helped you with the grinding or choking, having something stuck ? Occasionally had it, but now is constant, having a hard time swallowing since waking up. TIA
That’s really rough for you Eli; the poking/ feeling of something stuck can be caused by irritation of the nerve, usually the Glossopharyngeal nerve . Tooth ache is often caused by an irritated Trigeminal nerve, so any nerve pain medications would be the best for what you’re describing, but I think you’ve tried those already?
Interesting that they mention the GPN being compressed by the artery on the opposite side to the pain you have; sometimes members have had cross over symptoms. Did the report not mention anything about styloids; I wonder if anything was visible from the scan? Were they asked to look for any compression by styloids?
Thank you Jules.Been pretty bad with something stuck, a grinding sensation in the throat and upper palate, and also numbness, and burning on the problematic side. Much harder to eat or drink even water. Have pregabalin(which I took for a short period/very low dose a while back and gave me bad lower back aches and not feeling good overall, but I wasn’t feeling as bad as now), gabapentin (only tried shortly), carbamazepine (just prescribed by a neurologist )and blood thinners (suggested by a dr). Any medicine do you suggest I should start with? I know everyone is different and some don’t provide any relief, but I do need to take something and when starting I know it needs time to build up. I am also suffering from extreme salivation and/or reflux? very dry mouth, aching teeth, and numb lips when waking up, seems like ES and GPN. I guess it’s just a matter of trial and error? Thank you
report doesmt mention anything styloid related ,neuro didnt ask and this is an mri
im assuming it wouldnt show?
Hi Eli,
I’m so sorry your symptoms are getting worse! It seems you’ve gotten some conflicting diagnoses from the various doctors you’ve seen which makes deciding what to do more difficult. If there was a doctor you felt particularly comfortable with & whose diagnosis made good sense to you, I think you should go back to that doctor & get possible look into a more invasive treatment such as surgery. It does sound like you’re still trying to better understand the cause of your symptoms though, so that’s important, too. ES & other syndromes that have similar symptoms can be challenging to diagnose. Since you’ve mentioned having a very dry mouth a number of times (are your eyes dry too?), have you looked into Sjögren’s Syndrome? Some symptoms of SS are similar to ES. Ben’s Friends has a Sjögren’s support group which you can visit w/o having to sign up for it. https://sjogrenssyndromesupport.org
Another Syndrome that’s very similar to ES is Ernest Syndrome but unfortunately there’s not a BF support group for that. The stylomandibular ligament is what calcifies to cause Ernest Syndrome.
Some of our members can’t tolerate the nerve pain meds so they take narcotic pain meds such as Tylenol w/ codeine or others to help reduce pain. Others have found muscle relaxers like Elavil, Flexeril or Baclofen. Does just plain Extra Strength Tylenol/acetaminophen help you at all?
Do you get any pain or symptoms relief if you ice your neck for 15-20 min/hour? Are you sleeping w/ your head elevated at night? These are all things that can help reduce symptoms
Please let us know what you learn from your FIESTA MRI. I wish I could do something to help you. Your situation sounds so awful! 
I will pray for you. 
The styloids do show up in an MRI, but they’re often hidden by the soft tissues that are over the top of them. If you know how to use software to “peel” the layers back on the scan, you can most likely see your styloids.
I take Amitriptyline, it works for me, but not for everyone, and it can cause a dry mouth so that might not be helpful for you. I have a dry mouth as well, I had it before taking Amitriptyline, so I don’t think it makes mine any worse. The gabapentin or carbamazepine would need to be taken for a few weeks I think before you’d know for sure whether they work. So maybe try the carbamazepine for a few weeks; you may get side effects, but if they do help the pain, you’d have to weigh up whether the benefit is worth it.
Try heat and or ice too. Some members have had temporary relief with steroids to settle inflammation down, that might be worth a try, but I’d maybe only try one new med at a time or you won’t know which is helping? If different doctors have prescribed different meds it’s worth checking whether they were aware of what you’ve been prescribed & whether they’re safe to take together (if you were to try carbamazepine and the blood thinners).
MRIs aren’t the best scans to see the styloids on, but sometimes they do show, & as you had the FIESTA one, I wondered if may with that being more detailed it would’ve shown compression by styloids & not just blood vessels?
I’d be really interested to see what the scan results are, I have similar symptoms, especially the choking and grinding. I have recently found out that they are a lot worse when I’m stressed or when I’m not breathing using my diaphragm and I’ve also become more aware of the fact that I’m always “posturing” my lower jaw, I always hold it jutting forward or clenched or sort of tense the muscles just in front of my ears (I can’t really explain this well but when I realise I’m doing it I relax but then I can’t remember what I was doing to recreate the movement afterwards, it’s really strange). I’ve begun to wonder if I’ve got TMJ (haven’t got any jaw pain or clicking). I now feel like I have completely forgotten the natural and usual place for my jaw and tongue to be. I just thought I’d mention this incase you are aware of doing any of this. I find that lying down and properly relaxing my jaw makes the choking sensation subside (although not always completely go away). Also for the back of the throat, I kind of try to open it up with yawning (makes a sort of creaking sound at the back of my throat) and really concentrating on trying to relax it. I have got calcification of the ligaments, I’m not sure if this contributes to muscle spasms on my bad days. Also weirdly when things are really bad and none of the above it working, I stretch my hamstrings/calf muscles and this also unlocks my throat. Might be worth a try. Hope this helps.