Hello, I am new here! I wanted to make a post introducing myself and trying to get some guidance on where to go next. I am 34 years old and for the past year have been really, really strugging with severe tension-like headaches, and other crazy symptoms. The facial/head tension NEVER stops, it can get a little better but never lets up completely like a migraine or stress headache usually will. My symptoms resemble TMJ disorders quite closely, so it’s been hard to figure out if it’s just that or something more rare.
It started last december when I noticed ringing/hissing in my ear, I didn’t think much of it, but it kept getting more noticable, then about 2-3 weeks into that I started to get really bad ear pain in both my ears, fullness, and some sound distortion. I thought it was for sure an ear infection so I went to the ENT and they checked my ears and said I had no infection and sent me home.
It then progressed to what felt like a sinus infection, runny nose, sinus pain, face pain. So I went back to the ENT and they did a sinus CT and a scope and found no sinus infection, just a little bit of post nasal drip. Then the pain quickly started spreading to my jaw, which started to become very tight, then one night I opened as wide as I could to “stretch” it a few times and awoke in the middle of the night in absolutely unbearable face pain which felt like my face was being crushed, I went to the ER and they did a brain MRI, which came up clean and sent me home.
After seeing some neurologists who just said I had a migraine or “daily persistent headache”, I knew it was not either of those, so I chalked it up to a TMJ disorder and saw a dentist who made me a mouthguard. After all, I used to wear a sleep apnea device which totally messed my bite up and made my jaw click, but I never did have any jaw pain until all of these symptoms suddenly hit me. One odd thing that I did was try to fix my bite by myself and continually shove my jaw back to the original bite position, it would cause some temporary pain but never lasted, I stopped doing this a month or so before these symptoms hit me. At the time of onset my neck started to get super tight and crackle all the time. After about 5 months of wearing the mouthguard, doing botox, and PT my jaw stopped clicking and popping but I still have tremendous facial pain, along with scalp, neck, jaw, ear pain. I also got an MRI of my TMJ joints and they came back perfectly normal. So I began to consider other possibilies.
I also suddenly got some pretty intense neurological symptoms at the time of the pain onset like severe anxiety, stuck in an adrenaline-filled fight or flight response, muscle twitching, tingly skin (especially in the face), muscle jerking, shallow breathing, brain fog, hearing loss, insomnia, jolting awake at night…and maybe some others I’m missing.
Due to the fact I have a lot of neck pain and even back pain (I’ve had the back pain for longer than the hehadache symptoms) I got a full spine MRI. My thoracic spine showed a few pockets of diverticulum and suspects there MIGHT be some csf leakage somewhere, I am still waiting for the neuroradiologist to investigate further, he is very booked up.
I was also diagnosed with ES by Dr Ryan Osborne in LA after he did a CT w/ contrast and found I had bilateral calcified ligaments with my left one measuring 2.7 cm and my right one is measuring 4.3 CM. He said he doesn’t really know if he can attribute ES to my symptoms but he feels comfortable doing my surgery if I decide to. I also had a CT angiogram of my neck in the hospital and they didn’t mention any sort of vein or artery compression so I am assuming I am not suffering from the vascular type of ES. The styloid resection surgery is crazy expensive and there is no guarantees it will fix anything.
So in summary, I am having trouble tying my symptoms to a cause. I think it could be either a CSF leak, ES, or even both. OR maybe CCI or just a plain anxiety/TMJ/clenching type thing (but my symptoms do seem very severe to be just this, and my tmj joints feel fine and look fine on images, I can even press on them without pain). Most of my jaw pain comes from below my ear and jaw, not from the joint area. Another interesting thing is my face and jaw pain is much worse setting at the computer with my head a bit forward, and is better when I wake up in the morning, so maybe CCI or csf leak related?
So after seeing a bunch of neurologists and doing almost every scan possible. I have narrowed the cause of my symptoms to either a CSF leak, or eagle syndrome, or both. Or CCI, or even just anxiety/tmjd/clenching (but I find this hard to justfiy with the severity of my symptoms, there is no pain coming from the tmj joints themselves, there is no more clicking after using my mouthguard, and the tmj MRI showed no joint issues, only the opening and closing being slightly off center). Maybe Ernest syndrome too from messing with my bite, but not sure how I’d even investigate this.
I am looking for advice on how to proceed from here. Right now I have evidence for ES and a small bit of evidence for a CSF leak (but I am still waiting to get a mylegram to confirm that). I don’t really have hard evidence for anything else yet. My anxiety is so bad that I have trouble being objective about what is caused by my body and what is caused by my anxiety.
Along with MRIs and CTs I also had a lumbar puncture which showed an opening pressure of 21, which is considered normal, they did it in the sitting position though, not lying down.
Here is a complete list of my symptoms. I appreciate any advice! As the “specialists” in my area have been completely useless. One “facial pain specialist” even charged me $2500 out of pocket for some trigeminal nerve blocks that didn’t do a damn thing, and was convinced it was just “upset nerves” that was my issue.
Extreme muscle tension/pain all over my face, head, jaw, temples, and neck
Tinnitius/hissing sounds in my ears (much worse on the side with the more elongated styloid ligament)
Inability to open mouth wide, pain when doing so, it’s not really that hard to eat but after I am done eating my muscles are pretty sore
Very tight neck muscles in the back of my neck
Pain in the occipital area right below the skull
Sinus pressure/pain and nasal congestion
Tingliness in the face
Fatigue
Vertigo (this only happened a few times when the symptoms first started, haven’t really experienced it since)
Parasthesias around my face and body
Muscle twitching in my face and body
Muscle jerking, especially with sleeping
Teeth pain (mainly upper teeth but have had lower teeth pain too)
Ear pain and pain below ear
Pain between the shoulder blades
Anxiety/feeling of doom (I’ve always had some anxiety but never nonstop anxiety like this)
Discomfort/tightness at the base of my tongue (no sharp pains though)
Submandibular glands seem to swell up randomly
Random blood pressure spikes
Sometimes dizziness after lying down
Crackling from my spine when I breathe or move slightly
My pain symptoms seem to be much better when lying down for a while with my bite guard on, and MUCH worse when sitting at my computer.
Sometimes dizziness and high heart rate when standing up from lying position