Hello - firstly thanks for taking the time to read this! I am Ashley from Michigan.
I visited a new dentist a couple days ago and he told me I have ES. After looking into this condition I am STUNNED. This could potentially explain a lot of problems I’ve had over the years that have been routinely dismissed by doctors of almost every specialty!!
Here’s my story/symptoms that I think might be attributed to ES, now that I know about it. I have a strong suspicion I have vagus nerve issues going on.
I experienced a sudden onset of symptoms in 2019, and saw many doctors looking for help, and in the end was diagnosed with ANXIETY. I never believed that, I knew something was wrong, but I gave up looking for help.
In summer 2019, I developed a partial paralysis on the right side of my face. I had no other symptoms and didn’t realize this has happened until watching a selfie video.
In winter 2019, I was feeling fine, went to a hairdresser. When she tilted my head to the side, a wave came over me like nothing I ever felt before. It was like someone had yanked all the flesh in the back of the right side of my head, and my face felt super tight and weird. From that moment on, things just continued to get worse and new symptoms developed over the next year.
nerve pains shock-like going down my arms and torso into the thighs, blurred and jerky vision, a feeling like my head wasn’t attached, numbness in extremities, coordination issues, metabolic issues, muscles spasms particularly in my abdomen, a feeling like my throat was no longer working or I didn’t have sensation in my throat, anxiety, depression, reaction from my stomach anytime I ate or drank anything
After a few years of run-around I slowly got better on my own, but I have problems I’m still thinking could be ES.
neck and upper back pain and tightness (this is daily pain going on years, constant, never goes away, nothing helps)
an excruciating vise-like pain brought on by yawning that starts in my chest and goes into my left side abdomen
clicking in my throat and the feeling there is something “loose” in my throat, choking and swallowing issues, as well as a periodic cough
sudden left side jaw/throat pain when eating
pain that radiates the top of my right ear
occasional dizziness and blurred vision
heart palps, especially after eating
There might be more I’m leaving out, but thats the main stuff. I’ve felt like a hypochondriac for years because I don’t understand how I can have so many different, seemingly unconnected problems. Now that I have heard of ES and done the research, I’m eager to follow up with a doctor but I am worried about if I’ll be believed, or if I’ll just be dismissed again.
My main worry is the weird stroke-like episode I had in 2019, and if that will happen to me again, and also the throat issues as they have been getting worse the last few months
I’m glad that at last thanks to your dentist you have an explanation for your symptoms! Although obviously it’s not great to have ES… Lots of your symptoms do sound like ES, there’s some good info that @GrnyAny posted in this discussion that you might find interesting:
Have you ever been assessed for cranio cervical instability? Your description of feeling like your head not being attached is one that people have mentioned with CCI, & lots have both conditions…might be worth having a look at the symptoms is causes although there are quite a few which overlap with ES.
Hopefully if you see a doctor with experience of ES then they won’t dismiss you; sometimes it’s better to stick to the more common/ better known symptoms like the throat choking issues, pain in the jaw, clicking in your throat, as some doctors even if they’re knowledgeable about ES have quite a set idea of which symptoms it causes and can dismiss the less common ones…
Thank you so much! No doctor has ever raised the question of CCI with me, however I have come across this diagnosis on my own, and I do think I might fall into the category. One of the symptoms I have is chronic pain and pressure in my neck, especially occipital region, and every time I turn my head or look upwards my neck grinds and cracks. I can crack my neck about a hundred times a day and it doesn’t do anything to relieve any symptoms.
One of our members @PatientD suggested this to look for instability yourself:
‘On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
Oh - yes! I didn’t even consider that, but my head does visibly tilt to one side!! And one shoulder is higher. This is such good information thank you! I need to really do a deep dive before I see my doctor, and have all this info, because I know that with stuff like this you really gotta advocate for yourself.
It might be worth having a look for some research papers which support your symptoms to share with your doctor; it’s been helpful for some members. There are lots of research papers in this section:
@Morechoiriel what imaging have you received? CT or xray? The dizziness and heart palpitations after eating and the throat clicking leads me to believe something is going on with your hyoid bone. If you got a CT I can help you check that if you have your imaging on hand? The stroke like symptoms leads me to believe one of your arteries is getting compressed or irritated by styloids or maybe hyoid bone.
Did your dentist make the ES diagnosis based off just your symptoms, or did they look at the neck MRI to make the diagnosis? I would’ve thought the dentist would’ve caught it on a dental xray?
I just saw this dentist first time 2 days ago and they did a panoramic xray. He had no idea about my past history or any of my symptoms. The MRIs I had done back in 2019.
Since you have the ES diagnosis, you should request a head/neck CT with contrast. This is the best imaging for ES, especially if vascular compression is suspected. If you have a family doc or can get referred to an ENT that would be great. I think dentists can order CTs as well? I can’t see a doctor fighting you on it, especially since the dentist has diagnosed you and you’re concerned it’s the cause of stroke-like symptoms. Based on your symptoms it sounds like you have IJV compression, maybe carotid compression, and vagus nerve compression happening. CT with contrast can help with the vascular stuff!!
Thanks, I will absolutely be asking for a referral and a CT scan. I guess I’m worried they won’t know about it or won’t believe my symptoms, because aI have been dismissed a lot in the past. I did look up some DRs in Michigan though so worse comes to worse I will ask for a specific referral to those docs.
Since you know your dentist believes in and knows about the condition, I wonder if they would be best to order it for you? Hopefully they would write a good referral note to the radiologist. In my opinion, after my agonizing navigation with doctors over the past year, radiologists play the most important part. Doctors (at least here in Canada) see radiologists as gods and will only do anything if radiology makes things clear. I keep getting told by doctors “well the radiologist didn’t say anything about your styloids in your CT report” - maybe because most radiologists hardly know what a styloid is or ever checks for elongated styloids or IJV compression. The key is to make sure the referral sent to radiology specifically asks to look at your styloids and any potential compressions of vascular structures in the neck. I think your dentist could be your best advocate. Getting it sent to neuroradiologist would be icing on the cake.
