Atypical symptoms

I've been reading on this site for quite awhile, as well as searching online. My symptoms form a puzzle that doesn't "fit" the model of Eagles, but I do believe it's the root cause. I was actually diagnosed by accident 15 years ago by an orthodontist I worked for when we were training on a new CT machine. He (and the tech training us) both recognized it, and said it was a classic case, with the right side slightly longer than the left. He obviously didn't know enough about it to treat it though, and since I wasn't having any of the typical symptoms, did not refer me to anyone else. He did have me see some other dental pros to rule out issues with teeth, salivary gland, etc.

The symptoms I began with, and have managed over the years:

  • Inflammation begins in my neck area (under my chin)
  • Swelling of the right side of my face, causing my eye to eventually swell nearly shut
  • Intense headache around my right eye
  • Droopy face on that side
  • Dizziness/vertigo
  • Slurred speech
  • Foggy brain, confusion
  • Intensification of ringing in my ears (they always ring)

Although I do have a foreign body sensation in my throat, ringing in the ears, ear pain and headaches, I do not have the typical pain associated in the neck with Eagles. What I fight is inflammation and neurological symptoms.

At the time of the diagnosis, the "episodes" of these symptoms were increasing. A doctor checked my thyroid, which was slightly low, so I began treatment with Armour. The symptoms got better! Over the years, what I noticed is that when my thyroid levels dropped, the episodes began again. Of course, the doctors assured me that low thyroid could not cause symptoms to that extreme, but I believed it was somehow related. Since one of my low thyroid symptoms is water-retention and facial puffiness, I have always thought that any inflammation I have could be causing the styloid process to interfere with or compress something in my neck, possibly a facial nerve. Unfortunately, over this time (as a small business owner), I was either uninsured or under-insured, so never sought out specialists. I just worked to keep my thyroid levels up, and it was manageable.

I ended up with a fully calcified thyroid gland 3 yrs ago, and had to have it removed. Since then, I've seen numerous endocrinologists, hormone specialists, etc., and they all say there is no correlation with these episodes. But I have had to fight harder to keep my thyroid levels high enough to prevent the episodes. I am now considered to have "medication-resistant hypothyroidism", and take more than my lab results support.

15 years after the initial diagnosis, the atypical symptoms continue, but are now becoming unmanageable, even at higher thyroid medication levels. I finally saw an ENT (the only one in my area that says he treats Eagles), and immediately he ruled out Eagles since I don't have the pain typically associated with it. He did order a CT (at my insistence), and the radiologist report said both ligaments are over 4 cm, and that it did indicate Eagles. He palpated the ligament on the right side of the back of my throat, not the left. However, he glanced at the CT scans for about 30 seconds, said it still doesn't fit the profile, and you should just go to a neurologist, then dismissed me.

SO my question is has anyone else experienced swelling issues on one or both sides of the neck and face? I can now add to the symptoms list: "ridges" have formed on the top of my head, which are swollen and tender during episodes, along with intense headache and scalp pain. (A google search finds Cutis Verticis Gyrata, which can be caused by inflammatory conditions).

I am now going to have to search out of network for a doctor to help me diagnose/treat, and am SO curious to see if anyone else has seen this presentation of Eagles before, or heard mention of it in any research?

Not seen any mention of swelling that I can think of, but certainly the droopy eye symptoms/ facial paralysis several people have had, probably caused by one of the cranial nerves being affected. The link with thyroid has come up a lot though, and I saw a couple of mentions when researching causes into ES of metabolic disorders being linked to ES. Emma has looked into the thyroid angle quite a bit as she's had a lot of problems; you could try to message her to see what her experiences are/ were.

I've never had pain with swallowing, and a lot of my symptoms all started at the same time as I had salivary gland issues, and I always get symptoms worse with any other virus, cold etc. Headaches are common, and scalp pain I have which I believe is Trigeminal Neuralgia- if you look at images of where the Trigeminal branches go I get pain along there. It's really interesting how all the problems you've had link in- calcification of thyroid, inflammation etc., but sorry that you've been brushed off. Keep on trying- have you looked at the list of symptoms one member posted following the survey results: , there's a variety on there, not sure if you'll find anything like yours on it. And if you can look in the doctors list and find anyone else to ask to be referred to, research as much as you can, take info with you, and keep on pushing to get help. That is something we've all had to do; good luck!

Thanks for the info Jules. Yes, more research and finding the right doc is the key.

When I first went to the ER with severe pain, one of the nurses said that the right side of my lower jaw was very swollen. Ever since that point I had a swollen submandibular gland. I also had constant dizziness for three years. My scalp didn’t hurt but would have episodes with a weird feeling.

I too had my thyroid removed due to mutltinodular non toxic goiter on both sides.