Hey everyone. I am so thankful to have found this community, it has given me some hope and outlined important steps I have to take…
I am 23 years old and have been suffering with eagles since i was 22.
My condition started one terrible morning where I was yawning extremely wide and stretching way back after just waking up from sleep… Then the most earth shattering snapping sound happened inside of my throat and the pain immediately brought me to my knees. I didn’t immediately go to a hospital from advice from family (honestly probably a poor choice) but suffered severe neck pain on both sides for 2 weeks, and was basically confined to bedrest.
Eventually the more severe pain passed and left me with many of the common eagles symptom, usually only on my Right Side:
- General Pain and Muscle Tightness
- The feeling of something in my throat when i swallow
- Sometimes a “thumping” (NOT CLICKING) sound as if something is getting caught and grazing against some inner structure (id love if someone can explain that one to me,it only happens when my neck is already tight, and makes my neck pain get much worse for hours after these events)
- Sharper pain and discomfort in Certain positions that makes sleeping difficult
- And a whole lot of anxiety
After two months of those symptoms and waiting for busy ENT specialists i finally got my eagles diagnoses with a ct scan. (he didn’t see any signs of a fracture, so idk what the EVENT was months ago that caused all this) Was told it seemed to be a “mild case of eagles” whatever the heck that means, and that surgery was the only option IF i couldn’t handle the pain… He made it seem that it shouldn’t be that dangerous if i didn’t get the surgery… straight up told me i shouldn’t worry about stroke… So i procrastinated for a looooong time on making progress toward bettering my condition (looking for surgeons) and tried to live through it with some medications and other techniques like cold&heat, etc.
Fast forward 6 or so months and my condition has (as expected) not been alleviated. I haden’t slept well in so long… I started developing other random symptoms… Severe digestive issues, twitches in my neck, face, and temple, and a constant dry mouth…
Drs (despite knowing of my eagles and my pushing for that being a possible reason for ALL of my symptoms) pretty much ignored the eagles and went all out trying to treat my stomach symptoms as they had gotten more unbearable than the neck issue itself… I was put on omeprazole for 3 months, and my stomach problems only got worse and worse. I kept asking if i should stop taking it and my doctors always said no… I lost 20 pounds… im 6 foot and only weighed 140 beforehand… i was skinny already and didn’t have the weight to lose… Eventually i said screw this, and stopped taking the omeprazole and my stomach problems lessened a bunch in just a few days… While i was on the omeprazole i had a tension-like headache that lasted for nearly two whole weeks, hard to say if that was another newly developed symptom or a result of the medication (it can cause headaches) or both… haven’t had a long-standing headache like that in a month or two since stopping however…
Now its been almost a year since my original event (10 months since diagnoses) and things have been particularly tight in my neck this week… I don’t think I can handle this stress anymore… I lost my job because it was a high stress (0 downtime for 8 hours) environment and couldn’t handle even the lighter physical labor aspects of it anymore between the neck and stomach issues… Not having money has been an issue now… medical debt on top of school debt is very tough and stressful in itself… my GF has gone into some credit debt taking care of me and i feel more guilty about it every day… the family i come from is poor and have helped all they can, but times are tough…I’ve been trying to work from home, but haven’t had much luck with online jobs that pay anything decent… if you guys have any advice on navigating the US system for any kind of monetary support for people with health conditions, I need it.
Just this week i found this support forum and read through many many stories, it was like looking into a mirror. I wanted to cry but… the “choking up” sensation when your throat gets tight when you cry always causes me great pain… (laughing too hard as well for that matter…) i’ve legit not been able to show/have my emotions because of this condition for months and months… sigh…
I live in North Carolina and after reading through all of your stories I’ve decided surgery is probably the best option, with institutions like DUKE being here i hope i can find someone, if anyone has any names of DRs from the region id love them… Also realized that i should definitely get another CT scan (though i had 3 in the last year for my stomach/neck problems already ugh) WITH contrast this time to make sure things havent progressed and that i’m not gonna get a stroke from this… fortunately i haven’t been feeling many of the common vascular symptoms other than that one headache for that one period of time, and the occasional weak headache. (No wooshing, no dizzyness, no lightheadedness) … ONCE OR TWICE during bad flareups i feel my heartbeat bad in my throat and thought i was going to die >.<
Honestly my arms and mind are open to any support or advice… I appreciate this community just for existing… This is a sucky condition and It’s good to know we aren’t alone…