So hi everyone, so glad I found this place. I was just diagnosed with ES a couple of weeks ago, though I’m pretty sure I’ve had it for quite awhile symptom wise.
I’m 46, female, and I’ve been thru the ringer it seems with a lot of weird health issues. I was diagnosed with Graves’ disease (hyperthyroidism) about 20 years ago, had RAI to kill off the thyroid and was one of the people who gained weight instead of losing which is 20% of the cases. Found my body has a predilection for making things that it shouldn’t. Several pre-cancerous polyps, that luckily they first found when I was 30, ganglion cysts, and a tumor (benign) on my Parotid gland of the left ear area just a few years ago, which is also apparently fairly rare. Jan of 2015 I got a headache that never went away again to this day. I’ve been on a search to find out why and fix if possible. It’s usually a pain right above both ears, worse on the left side for me, but both sides definitely. Found I had Deg Disc Disease a few years ago, had cervical surgery, which Drs said was worst case they’d seen in someone my age, that helped a little. Tried various medications, nothing helped. Tried acupuncture, chiropractic, all sorts of meditation, and the like, nothing helped much. I developed sleep apnea a few years before I started the headache and that may be the thing that solves this. I had a thought maybe trying to keep my mouth shut while using a CPAP might be causing TMJ issues from tension thus causing the headache. So searched out a Dentist that was proficient in TMJ and sleep studies, and apparently that type of dentist exists! He did a 360 radiograph of my head, and a few minutes later showed me that I have Eagle Syndrome, wow, those are super long on both sides, he said it’s one of the longest he’s seen in his practice, and he’s seen several in the last two decades. I also have problems with jaw being slightly misaligned so that’s an issue causing pain as well. I’m in Louisville, KY and he’s sending me to an ENT named Dr. Bryan Murphy here tomorrow. This is where he sends all of the patients he’s had with ES because Dr. Murphy is supposed to be one of the best (and few) who knows about ES and how to treat it. So tomorrow I go talk to this doctor and we’ll see what he can do. I’m hoping he can give me some good information, and I’m going to use some of the things I’ve read here to help me make an informed opinion about anything he recommends.