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Hi all! First post here so hopefully some of you may be able to help me.
In June I woke up one morning after a loud concert with vibrating in my right ear. Terrified by this I went to an outpatients appointment at my local hospital, and was told that I was suffering from Eustachian Tube Dysfunction and he prescribed some tablets to treat a middle ear condition as well as decongestant nasal spray. With my ears not getting any better, my GP prescribed me a different steroid nasal spray, which did not work. Since this happened, my ears have become progressively worse and now am afflicted with the following conditions.
My symptoms are:
- Tinnitus in both ears
- Right ear Eustachian Tube open at 3mm, left ear Eustachian tube also open (explained below!)
- Both ears 'crackle' when swallowing. Some relief offered after yawning as first swallow is sometimes not affected.
- Left ear will occasionally 'click' when talking/walking, akin to rice crispies popping.
- Right ear will occasionally be affected by autophony - usually during/after walking/exercising but (luckily) short lived, max 10 mins.
- Occasional earache at front of ear and across temples
- Feeling of pressure
- Good hearing but being able to pick up a lot of noises I previously wasn't able to hear/tune in to. Crashing plates etc hurt.
On a family holiday to Prague my ears were so bad that I was taken to a medical centre out there and they performed an endoscopy which immediately showed that I had patent Eustachian tubes, with both permanently open - my right at the worst, open to 3mm.
However on return to the UK the ENT doctor I saw here was dumbfounded - all the tests they undertook came back that my ears were fine (no hearing loss) and that I didn't have Eustachian Tube Dysfunction (which I knew now) however couldn't tell me what the issue was even though I told him it was Patulous, with evidence of my Prague medical report. He prescribed me a steroid nasal spray (of which I haven't taken after research online of nasal sprays having an adverse effect) and told to come back in 9 months.
Earlier this week my autophony was coming back quite intensely and not related to exercise so I'm become really constantly anxious whenever I swallow incase it comes back.
Googling my symptoms has left me feeling incredibly low and not knowing how to move forward, or what the future holds for my ears. I've not been able to sleep for nights on end due to the crackling whenever I swallow. It makes it especially worse as I work in music and haven't been to any work events recently due to being concerned for my ears!
I would really appreciate it if anyone here could offer me some advice as to moving forward with this condition and how to manage it. Has anyone had similar conditions and how did you deal with them/help?
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