started Pregabalin last night again , after only taking it gfor 2 weeks months ago
I feel awful , worse than yesterday . Can feel more every grinding , movement and popping /crackling sound in head ( assuming has to be the neck ) . Has anyone experienced cracking, popping zapping sounds that feel that they are coming from their head as a symptom in general w calcified ligaments that they after they happen severa times they become a headache? could it be coming from the stylois or ligaments or its def a neck or tmj issue? Thank you , this is no fun
My head and neck sound like a musical instrument sometimes! Lots of noise, and, sorry to say, lots of pain.
1 Like
Crunching in the neck isn’t necessarily ES, and isn’t necessarily anything serious, it can be air trapped in the joints, or tight tendons rubbing. There are lots of articles online about when to be concerned:
When Neck Cracking Needs Medical Attention | Spine-health
The headache may be that tight tendons are causing a tension headache?
1 Like
I get this, one of my very first symptoms was whenever I led down I would get lots of popping sounds from my nose. Then it was my throat, a bit like popping bubbles or something. Then over a few months I started to get more of a creaking noise (a bit like an frog) but feels like a door creaking open, along with the popping, all from the throat area at the front rather than the back of the neck. Now the popping bubbles sound isn’t so frequent, but the creaking noise is worse. Sometimes the muscles at the front twang when I turn my neck. I have heard that this could be acid reflux which I intend to talk to my doctor about next week, but the creaking noise sounds more mechanical than reflux if that makes sense.
2 Likes
hi@skatkat thanks . yeah i think might have acid refkux but doubt that it would cause grinding
im scheduled for a ph test but doubt ill do it since in so much pain
please lemme kmow what you find out
thank you !
1 Like
@jules
thank you for your reply. im feeling awful. the grinding and poking is bad and dense almost like something is disintegrating.I had scheduled a face to face visit w Constantio , I know he doesnt have Telehealth till may 16th but im feeling awful , so not sure I can take a plane to ny in my condition
I also can’t stop spitting thick salivation this so uncomfortable ;/
1 Like
Will do, I do have slightly long styloid processes (Right 36mm and left 32mm) and the ligament has discontinuous calcification both sides. I saw Dr Jonathan Hughes in London but he wasn’t concerned about it and wasn’t convinced that it was causing my symptoms. Sometimes mines worse when I’ve been looking down a lot, especially if I tuck my chin. Most of the time I feel as though the front of my neck is collapsing inwards and on really bad days I get a choking feeling and a lots of tightness. I’ve had a lots of different tests, scans, etc but nothing significant has shown so far, nothing that corresponds with what I’m feeling. It’s been going on for over two years now.
@Skatkat - I’m sorry Mr. Hughes didn’t think the ligament calcification could be a significant cause of at least some of your symptoms. I would be willing to wager it is because those calcified sections are tethering your ligaments which means they can’t move freely as they’re meant to thus neither can your hyoid bone. These problems all add up to symptoms of pain & possibly the other sensations you’re experiencing.
I think so too, I’m wondering whether to get a second opinion…
1 Like
I absolutely think you should get a second opinion. Mr. Hughes is in the limelight at the moment because he has helped & is helping a number of our UK members, however, we do have several who clearly have ES symptoms whom he has turned away.
I’m not sure who else to refer you to, but there are other doctors in England who have helped members in the past. Here’s the link to the Doctors List so you can make some contacts:
1 Like
Have you tried Patrick Axon in Cambridge… he’s the other UK consultant that operates? He’s at Addenbrooks (NHS) & Spire (private).
2 Likes
Not yet but I’m thinking to get a second opinion from him. I heard that Mr Hughes was a bit more helpful, but not really in my experience.
1 Like
I’ve heard Hughes can be hit and miss, but Axon more reliable. I don’t know though. I see Hughes Monday and am very nervous he won’t agree to operate on me. I’m housebound with symptoms, bilateral 4.6cm styloids, trying to work and look after 3 children. It he doesn’t help me I think I will actually have a breakdown. I’m finding the 3 week wait very stressful!! I’m on the NHS list for Axon, but it’s apparently very long!
1 Like
Mr Axon has changed the criteria for who he will operate on, @Warrick posted some good info about that recently, he will only do surgery for certain symptoms, so for @Skatkat it might be worth checking that out…I’ll see if I can find Warwick’s post!
2 Likes
Oooh I’ll have to try to find this post @Jules! I’m on his urgent waiting list and would be interested to know if I stand a chance. Thanks.
2 Likes
Warwick said this in a recent discussion…
1 Like
Oh wow so this may or may not get me seen! I have bad tinnitus and some pain from behind my ear down my jaw on one side only. Most of my symptoms are vascular! I just hope Hughes will accept me next week then!!! I’m starting to really worry.
2 Likes
@BabzieAM - Nothing ventured, nothing gained (I’m not saying this tritely). It’s worthwhile seeing Mr. Axon when you can get an appointment with him & especially if your appt. w/ Mr. Hughes doesn’t go well. I think being very clear about how debilitating your symptoms are can be helpful & also a discussion that it’s not just the length of the styloids but also can be angle of growth, thickness, etc. that can influence symptoms. Mr. Hughes, I believes knows that so if he is dismissive you can bring it up, but I hope it won’t be necessary.
1 Like
Thank you. I have styloid size in my favour… they’re at least 4.6cm each and pretty thick. I only have a 3d CBCT scan at the moment and the gap between them and my cervical vertebrae looks OK, but I have some classic ES and a huge list of Vascular ES symptoms. I probably have a good case, but until I know, my anxiety is bad. I’ll post after I’ve been Monday.
2 Likes
Hi, I read above chat & wanted to add that based on my own experience I think that some of these strange/abnormal sensations described may be due to the “vestibular” system. We all know about how our ears can “pop” with altitude changes on a plane. I have had that happen just when walking during my Ill health journey. But I think the pressure systems in our body are much more comprehensive and widespread than that and that many of these strange/abnormal sensations are due to the pressure systems in our body. We know that JVs collapse due to pressure changes when we are upright if we are normally healthy so that’s a known fact that body pressure systems are not just in our ears (eg. On aeroplane). My body is still adapting 9 months post op & as I write this front of neck feels like it is being “sucked inwards”. While it is disconcerting to have these sensations I try to comfort myself that is my body trying to work things out, it is not necessarily causing any harm and I hope in time body will work out how to be “normal” again. But it’s a tough ask as pressure system is subject to positional, altitude & other changes. Of course for members who still have compressions pre op the situation will be more serious. Sharing in case is reassuring on topic of strange sensations. Take care. D
2 Likes