When I first introduced myself to this forum I did not go into much detail about my symptoms, but I think it’s important to list them (for others with similar issues and to work out for yourself what the heck is happening to your body). I feel like I’ve got so many symptoms going on and many started at about the same time…they must be related somehow. This is where I end up going around and around circles in my mind though trying to make sense of it all. Maybe in addition to ES I also have Hyoid Bone Syndrome or maybe it’s just being effected by the styloids shifting the ligaments or by the styloids causing the glands to swell and push on the hyoid…I’m really not sure. I’m hoping Dr. Samji can help me work through this during our upcoming appointment. I believe I have a mixture of classical and vascular ES symptoms. Both styloids are not quite 4 cm. I have a diagnosis of ES. I also have a very petite head and neck. I am female…in my mid-40s.
Specific symptoms (not in any particular order, sorry for the length):
Styloid process felt in both tonsils (left closer to surface than right). Both are tender and cause local moderate pain upon pressure. There are other referred effects (e.g. pain in collar bone, dizziness/weakness), and these can be delayed by a few seconds. Pressure does not cause ear or facial pain.
Feeling that something is stuck in throat below base of tongue on the anterior/front side…I guess it would be the larynx. ENTs have looked many times and see nothing. I also have the greater cornu of my hyoid bone actually pressing into my esophagus on the left side. This is uncomfortable and I suspect that when I swallow it is hitting the back wall of my throat. If I swallow when turning my head at the same time this (or something else in this area) can cause sharp, attention-getting pain. There is also pain in the tissue beside the hyoid on the left side. Not sure if this is from the hyoid or from the stylo-hyoid ligament. Hyoid bone seems to shift side to side. I understand it is normal for it to rock back and forth but it shouldn’t make you feel ill. Yes, I stuck my finger down my throat that far…I was desperate to find the source of the pain. Painful to swallow in this area.
Sore throats often (once a week for several days each time). Redness, cobblestoning on back wall. Permanent (for past 6 months) darker streaks of irritated tissue on surface peeking out from behind tonsils. Left tonsil bulging.
Ear pain and popping and constant ringing, behind ear sharp pain. Whooshing noise with heartbeat/pulsitile tinnitis (esp when turn to right and lay on front, pressure on left side neck).
Burning mouth, tongue, gums…this is sporadic
Crampy feeling under tongue and jaw
Upper lip and side of face sometimes feel strange, numb, painful
Occasional under eye and cheekbone pain
Occasional (several times a day) stinging pain in nostrils
High ocular pressure, blurriness, eye redness and pain. I did not realize this was related to the problems in my neck until recently. It is either aggravated by or caused by nerve stimulation. But there is also a vascular component and the beta blocker eye drops help significantly.
Headache (nerve pain shoots up to top of head (parietal region?). I’ve had five 24-48 hour long severe headaches preventing me from getting out of bed (about one per week). Pain is not always in the same place and can move around. This movement of pain argues against a true migraine, but it is terrible, nonetheless.
Head pressure (top and front of head) from the inside out. When this happens and it is quiet in the room I can actually hear my brain or fluid around the brain tissue popping like Rice Krispies. This is scary but the emergency room has referred me to a headache neurologist to discuss Pseudotumor Cerebrei and ocular hypertension…they did not do a spinal fluid release or put in a shunt.
Dizziness/weakness/lightheadedness (pass out feeling)/sick nausea, spells lasting couple hours…must lie down most of the day. I believe some of this is nerve stimulation and some is fluctuating blood pressure. Mine ranges from 100/60 (normal for me all my life) to 145/90 lately. It can actually easily be both in the same day. I was prescribed Metoprolol last week for almost constant palpitations and to prevent these swings. The palpitations/PVCs persist but the blood pressure is somewhat better and so have more energy. Most people on beta blockers report less energy so this is confusing.
Chest pain (some related to PVCs, some not)
Shoulder and arm pain (occasional)
Collar bone and whole neck pain (sides and back of neck also) popping, stiffness
Neck Pain on turning head (mostly behind submandibular glands). Not sure if this is the styloid or the hyoid bone causing this…or both.
Front (top and bottom) tooth pain when biting down
Hard time chewing…jaw fatigue, pain in corners of jaw
Strange breath, taste in mouth sometimes
Clear fluid coming from left nostril frequently. No sinus infections.
Intense burning pain in neck that increases with exercise level…they had me do a stress test and so though my neck in front was going to catch fire
Car sickness without vomiting. Dizziness, head pressure, feeling like huge weight sitting on me, neck pressure, more palpitations in the car and this is worst at higher speeds. Most symptoms aggravated. Even if not driving. Not sure how I will travel for surgery…anyone have luck with Dramamine?
Looking downward (even slightly) for extended periods causes dizziness/strangled feeling, near-syncope episode once last week…scared me.
I do not have any brain fog somehow. As a matter of fact, I would say that my cognitive function has improved.
Please let me know if it sounds like other things are going on or if all could fit under the ES category.