Hi. I'm glad I found this board as I've already learned a lot. I figured I would post my saga to see if anything jumps out. Sorry if it is long.
For over a year I've been dealing with different symptoms. Like others, I've seen multiple ENTs, had two CT Scans of my neck, 2 barium swallow tests, neurologist vista, dentist visits, oral surgeon visits, etc. It's as if doctors are looking for something obvious saying "pain here" and when they don't see it they dismiss me as just having anxiety. I won't bore you with the list of medications and incorrect theories I've heard. Suffice to say none have solved things.
I have been convinced that what I am experiencing is not just anxiety. I say "not just" because I am willing to admit some of this has likely been made worse by my anxious reaction to it.
I had found info about this before and even asked an oral surgeon about it. He quickly dismissed me with "that's not likely" and kept talking. Ugh.
So I found a clinical neuroscientist on another board and emailed her some info from the diary I started keeping of my symptoms. She quickly wrote me back saying it sounded like Eagle based on her experience. I'm going to find some local specialists in my state to see if they can help. My symptoms haven't matched some of what I've seen but a number of things have. Here goes:
- I started first noticing an enlarged submandibular salivary gland on my left side where I was constantly feeling a knot feeling. I now think this may have just been a coincidence.
- As the months progressed, I kept having a feeling in my front neck of having something caught in my throat. ENTs just said it was "globbus" and dismissed me as having anxious feelings. I've noticed that increasingly I was having trouble swallowing pills (something I never had problems with before).
- As things progressed my tongue started tingling. Then it was burning. Now I have a constant tingling that goes all day. Sometimes it burns.
- I have felt like something was in the back of my mouth catching. I have to almost think about initiating swallowing. Food doesn't seem to be too troublesome though there are times I feel like stuff gets stuck and may cause a quick choking feeling. Swallowing saliva is much more bothersome. It has more recently moved into being something I'd describe as painful.
- I have noticed when I put my chin to my chest that this crunching feeling in my front neck feels uncomfortable.
- When I bend over like to tie my shoes or pick something up I feel like something could pop out my neck.
- The same thing happened going down an elevator. As the elevator went up I felt like something could pop up through my neck/head. I knew it would not but it made me feel quite nauseous.
- I've ridden roller coasters my entire life with no problem. Recently when taking my kids and riding, I had a terrible sensation. As the ride was going up and down and to the sides, I felt like I was going to suffocate. I felt like I was being choked from behind (or was it the sides? it's hard to tell sometimes) and this is what made me even more certain this wasn't just nerves. It is something physical.
- I've felt like I had a dry mouth. I've read others had excess saliva.
- I had an MRI recently, something I've done before with no problems. They were preparing me with some rubbing alcohol for the contrast and the smell overwhelmed me. I could literally taste it in my mouth and I got all clammy. I've read others lost their sense of taste. This has not happened to me yet. I seem to have a heightened smell or taste. Could have just been nerves I guess as I analyze every symptom.
- Have felt like my throat was going to close up on me.
- Occasionally had a very weird feeling in my pelvic area and went numb on one side from toes to head. Almost like I was having a stroke. I went to the ER once with this thinking that's what was happening. They checked heart and brain and said I was in great shape.
- My tongue has been feeling very tight. I find that I'm having trouble sometimes talking--not mentally, just physically feeling like my tongue is swollen and tight.
- I've also found that this tongue and neck feeling are worse when I'm sitting. Sitting at a desk or driving in the car is really uncomfortable for this feeling. If I get lazy and lay back with bad posture, I almost immediately jump forward and sit ram rod straight as I feel like my throat has something poking it and I could choke.
- Have had multiple bad headaches and sinus pressure issues that I've never had before.
- Pain behind left eye at times. A twitching too.
- Using heat or ice doesn't seem to help. In fact, I've often found it made my symptoms worse.
- Have noticed that I felt like I could not scream or sing because if I did it felt like something was scratching me. Had to speak almost monotone.
- Constantly feeling like I'm having to stretch my head up and back to the right as I feel like there is something catching in the front neck area. Sometimes I hear an audible click around the voice box.
- Sometimes feels like my jaw is "flinching" on its own.
- Have felt at times like I could black out. Get very lightheaded.
Sorry for the long post but there's my story. I've emailed some previous ENTs I've seen but I don't expect much help. I will plan on finding a couple of other specialists to see if they can help me. I have two CT Scans of my neck and no mention was ever made of Eagle which makes me wonder if I'm on the right track or if the radiologists just weren't looking.
Thanks for reading.
and ditto.