Unsure if I have ES. Undiagnosed ENT pain for years

This all started when I was 18 (I’m almost 25). I got headaches, felt mentally different (depressed, spacey, foggy), felt a lump in my throat (always in the same spot on the right), and had mild earaches. A couple years later, the headaches became migraines, my face muscles were twitching, the lump in the throat feeling got worse, swallowing became difficult (spasms when swallowing), I had severe facial and ear/nose/throat pain, and felt pressure in my head. About a year ago, things escalated and this is now debilitating. These are my current symptoms:

migraines (focused on right side)
ENT pain (all on right side)
dizziness (lightheaded, not vertigo)
globus sensation (always in the same spot on the right)
head pressure
burning mouth (so bad it’s hard to talk)
speech problems (from burning mouth and throat pressure/pain)
ear clicks when speaking and swallowing
jaw pain (on the right)
neck pain (back of neck)
base of tongue pain
heart palpitations
always tired

I’ve tried several medications including anti-convulsants and anti-depressants with no luck.

Also, I’ve had pretty much every blood test out there, and have had an MRI, MRA and CTA of my head/neck. Everything normal. I’ve yet to have a CT with contrast.

I spoke with my ENT about eagles, and she thinks it’s unlikely because she can’t feel my styloid in the back of my throat. She’s willing to do a CT with contrast (and have that converted to a 3D model) in order to make sure though. I’m waiting on her to place the order.

Does this sound like eagles though? I’m so frustrated with whatever this is and just want some relief… any input would be greatly appreciated.

Certainly the symptoms sound like typical ES symptoms- the lump in the throat, pain in your throat, neck pain etc. Some of the others are often experienced by members with vascular ES, like the head pressure, dizziness. Some members have had palpitations as the styloid processes are close to the vagus nerve, so can irritate it. Ear clicking seems to be quite common as well, and pressure on the nerves can cause speech problems. (There’s explanations of what causes common problems and also a list of all the symptoms members have experienced in the Newbies Guide) So it could be ES, and hopefully a CT will show if the styloids are elongated and/ or the stylo-hyoid ligaments calcified. It’s best to ask your doctor to request that it’s evaluated for ES; that they look at the length and angle of the styloids and for any calcification. It’s amazing how many times members have had CTs and the styloids aren’t even mentioned!

WOW! hollymagnolia! I’m sorry you started going through this so young! It’s not fun at any age but you’re at an age where a major health issue shouldn’t yet be a worry! (I am stereotyping a bit here…).

I agree w/ Jules that your symptoms sound very typical of ES. Do bear in mind that ES is not just elongated styloids. By definition it can be just calcified stylohyoid ligaments or just elongated styloids or a combination of the two. Your symptoms could be arising from a very calcified ligament as opposed to an elongated styloid which would explain why your ENT can’t feel anything in your throat. Additionally, as Jules mentioned, sometimes the length of the styloid isn’t as much of an issue as how thick it is or the angle at which it has grown/is growing.

Thanks for the responses. It really is an awful thing to deal with at this age, especially since I’m trying to start a career and everything. I mentioned to my ENT that I want my styloids examined on the CT, and I’ll tell the radiologist as well. They always ask why I’m having the scan done so they know what to look for. Do calcified ligaments easily show up on a CT?

Also, how is vascular ES diagnosed? Wouldn’t that have been seen on an angiogram? I’ve had two of those because doctors this this is vascular related, but everything looked normal.

Jules - thanks for directing me to the newbie guide! A lot of helpful info in there.

The calcification on the ligaments shows up on a CT scan but the ligaments themselves will not. In order to see vascular impingement you’ll need a CT scan w/ dye contrast as soft tissues don’t show up on a CT which is really just a fancy x-ray.

I’m not sure about what would & wouldn’t show up on an angiogram. If you do have ES & your styloid or ligament are pressing on vascular tissues, it might not be a constant issue. Sometimes vascular compression only occurs when the head is in a particular position but sometimes, compression is constant. Just depends on the angle of the styloid & level of calcification of the ligament as to what troubles they’re causing.