I’m curious if diagnosed individual’s symptoms are constant or intermittent? Some of my symptoms are intermittent and some are constant. My facial asymmetry shift is constant, lump in throat constant along with others. But visual changes, taste, trigeminal neuralgia and other jaw and neck pains are intermittent sometimes frequent other times very infrequent.
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Same for me. Front of neck tightness constant. All other symptoms come and go but I’ve always got the neck tightness with at least 2 other symptoms at one time. Visual symptoms come and go and less frequent. Throat symptoms more frequent.
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ES symptoms are notorious for coming & going, & as you both noted, there seem to be some that come & stay while others come & go. Sometimes we can figure out what triggers those that come & go & thus avoid the triggers, & other times, there seems to be no rhyme or reason. Stress tends to consistently flare symptoms so learning ways to help yourself not live in a stressed state can be very helpful in reducing symptoms. There are many suggested techniques such as slow deep breathing for relaxation, massage, acupuncture, meditation, etc. There are Youtube videos for every type of suggested relaxation exercise so you can experiment to see what helps you the most.
We’ve also suggested icing your neck on the side that’s irritated. Gel ice packs work great - 15-20 min on & 40-45 min off. Use a thin towel or cloth between your skin & the ice pack even if the ice pack has a cover. For some people, warm helps more than cold.
Nerve pain medications can also help for severe pain. These can take several weeks to “kick in” so do require some patience.
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I agree with @Isaiah_40_31 , it’s something many members have noticed, with no rhyme or reason! Sometimes I could pinpoint what made mine worse, for me the jaw and tooth pain were constant, until I started on Amitriptyline! But pain deep in the side of my neck varied.
What you are experiencing is infact how it started for me all upon to 1 year before my surgery. The symptoms 1 year before surgery was constant, but also new symptoms came, some weird ones…
Are you schedueld for surgery ? Maybe you are awaiting on diagnose ? 
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Brain fog, fatigue, pulsatile tinnitus, pulsations in the head, dizziness, head pressure are constant for me. Subocciptial headaches, neck pain, ear pain coma and go.
It’s so funny you mention the pulsations in your head. Do they feel like little flutters in your skull?
I’ve had that happen to me numerous times and when trying to explain it to different doctors they look at me like I’m crazy or making no sense.
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I hope you’re able to find a doctor who knows about ES & takes what you say seriously, @aholtswarth! Have you got an appointment booked with anyone?
I have an appointment next week with Dr Erin Kaye, at the University of Miami. She’s an Otolaryngology Head & Neck Specialist/Surgeon. When my neurologist looked her up her profile stated she treats ES.
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Please let us know how your appointment goes. Also, be aware that some doctors will not diagnose ES unless particular symptoms are present. This is SO AGGRAVATING! because not everyone exhibits the symptoms that are deemed most common. Don’t be discouraged if this happens to you. We also recommend not going in w/ a long list of symptoms. Just share the ones that are most bothersome to you.
Questions for you to ask at your appointment:
•Which surgical approach does she use i.e. intraoral (transoral) or external (transcervical) & how many surgeries has she done?
•Does she do bilateral surgery or only unilateral (requiring 2 surgeries for bilateral ES)?
•How short does she cut the styloid(s), does she smooth off the cut end before closing the incision?
•Does she remove calcification on the stylohyoid ligament that is separate from the elongated styloid?
•Is a hospital stay required post op or is surgery outpatient?
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This is great information! I don’t know how she could not diagnose it and to say I’d be aggravated would be a big understatement. I’ve got all but one of the common symptoms along with the complete jaw shift that’s very evident visually like you see in images of others when you search for ES patient images. I have the exaggerated tightly distended ligaments in my neck with a lump that deviates to one side when I swallow, same as images I’ve found. I have the scan with the ossification findings at both inferior and superior attachments. I’m not sure what other evidence she would need.
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You’re well armed! 
May victory in getting a solid diagnosis be your reward!!!
@aholtswarth More like feeling the jetting of the blood into my skull. If I sit still here at my desk my head actually starts bobbing to my pulse. If I have the back of my head pressed against something like my headboard I can really fell the vibration of the blood flow. I’m looking forward to having that gone.
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I hope that your appointment goes well, let us know how you get on!
That’s a pretty creepy symptom, @Chrickychricky!