Please help me out. Do you recognize my symptoms? I'm so tired of living with this.

Posted , 7 users are following.

Hi all.

This is my first post here. Sorry if my tone is wretched, I guess I'm writing this on a really bad day.

The myriad of symptoms I have experienced the last 3-4 years has been unbearable.

If I just cut to the chase and tell you about my symptoms.

Around five years ago I started to notice that people would hear stuff I would miss out on.

Over three years ago I woke up with a feeling of intense fever running from the top of my jaw all through my face. That night was a breaking point. I started using a mouth guard and the feverish feeling went away after some time. But from that day on my hearing worsened noticeably and has never been the same again. .

Of course I went to check my hearing, and they said it was perfect. I even went through an auditory brainstem response test that came out normal. I also had a tympanometry which did not show any abnormal results.

But I just can't hear things like I used to, not even close. I seem to be unable to localize sounds, and the only way things feel somewhat normal is when I use headphones. I get so dizzy and exhausted from noisy sound environments where there is a lot going on and many voices are active at the same time. Open spaces are just soundscape nightmares. Especially spoken words are almost impossible to decipher.

Other symptoms that just won't leave me be are:

1.Constant fore-head pressure on the left side of my face.

2.The feeling of being able to push out air through my left ear and this causes a slight popping sound or a click , while my right ear blocks the air-flow and doesnt cause these sounds, which feels normal.

3.Ear pressure building up when I lift something heavy, or try to do some jogging and cycling, and the feeling of heat and inflammation building up.

4.Hearing going even worse when I turn my head at times, or when in bed, turn to my left side.

5.Unable to hear words when I chew on food, or when I yawn or breath in through my nose.

6.Very stiff neck muscles and stiff jaw muscles and feeling of soreness around my left ear.

7.Dizziness during car rides, NOT the feeling of car sickness though,

8.Unbearable ear pressure during flights.

9.Zero stress handling ability, which was never an issue before in my life.

10.Extreme fatigue.

There are more symptoms, but I can't remember right now.

I follow a gluten/ dairy free diet, I think it gives some relief, but it's not the solution.

What do you think I suffer from? Could I recover my hearing since the tests show normal results?

Doctors I meet suggests it could be due to stress, but I can feel that stress isn't the source of this problem.

I would so much appreciate your guidance, or some words regarding what this could be.

0 likes, 11 replies

11 Replies

  • Posted


    I understand the pain you are going thru.

    My symtoms are closed to yours and been suffering for the last 4 years. after 1.5 of chimo....

    after seeing multiple doctors, I finally got diagnosed last month with Patulous Eustachian tube dysfunction on my right side affecting everything in my face around my right ear.

    The doctor prescribed premarin drops to put in my right nostril 3 time a day.... to help rebuilt the Eustachian tube.... AFTER 10 DAYS IT IS WORKING...

    I NO longer have excruciating facial pain and my ears are functioning without the popping sounds. my hearing is getting better, no more muffled sounds and autofony.

    hope this help!

    • Posted

      Thank you very much for taking time to post your experience.

      The two ENT doctors I have met have suggested it is related to stress, which is wrong, I can feel there is something else going on in and around my ear.

      I will try to get a new appointment and ask about Premarin.

  • Posted

    ever had your bite force tested? if you have problems with multiple muscles then maybe your teeth don't fit properly?

    • Posted

      They have checked my bite on a couple of occassions and they didn't say anything about my teeth not fitting properly . Teeth grinding is an issue I have, no doubt, but since I got my mouthgard two years ago it feels much better.

      But my ear is still screwed up.

  • Posted

    I am intrested in any information you may receive in regards to your post. I have been having the same issues for about 5 to 6 months now and have been put on rounds of antibiotics and steroid nasal sprays as I knew I had severely blocked eustachain tubes. I did not realize at first how effected my hearing was until having to constantly blow my nose but my ears would never completley pop or clear. I have pain randomly when I bend over and also doing some of the activities you listed. No one could explain the fatigue as some days I was sleeping for 18 hours or more and wouldnt hear alarm clocks etc. headaches are almost a daily occurence as well. After 2 antibiotic treatments and currently a 3rd round of steroid sprays, I am hoping this will solve these problems as I am sick and tired of being sick and tired

    • Edited

      Are you getting these treatments from a General Practitioner ie: Doctor or a specialist of Ear, Nose an Throat (ENT)?

      From my researches , I know they are better treatments than what you r doing. The most problems are that it is either caused by a blocked or too opened Eustachian tube. The treatments must corresponds to the cause otherwise.... it can trigger mixed results. the example is like using cortisone when the tube is too opened, will make it inflamed and it will get blocked, stuffs up nostril.... that's what happened to me before being diagnosed by an ENT of a too opened tube syndromes.

      if you have blocked nostril(s) there is a procedure that will use a balloon to open the Eustachian Tube to release the pressure. This procedure has great results.

      if your ears keep popping out, the tube is too opened... and it is call Patulous Eustachian tube problem. to fix this, they use Premarin drops in the nose to inflated the lining of the tube.

      just make sure you get an ENT specialist to get the right diagnosis.

    • Posted

      Thank you Dee I will bring this up my next follow up appt. I have been communicating with my family Dr but only over the phone as with the pandemic going on their offices are temporarily closed to actually seeing patients. He did say after this next round of sprays if my symptoms were not cleared up he was going to make an exception to see me in his office. Perhaps I can be referred to an ENT physician. All I know is it had been 5 to 6 months of aggrivation and I do not know how some of you reading the comments above have been dealing with things for years..

    • Posted

      I was on a Cortisone cure 2,5 years ago and it felt generally better. The same thing goes for when I take painkillers.

      Could that possibly mean that my ET is blocked?

    • Posted

      Melissa, may I ask where you live?

      I live in Sweden and I have to say that in my case, I have to wait so long to get to meet a doctor through our public healthcare system.

  • Posted

    I experienced some of the same symptoms as you for the past year. I just went to the doctor about it, and shes pretty sure my ear problems are due to a jaw issue i have going on. The joints where my jaw connects to my skull (right under my ears) pop or click every time i open my mouth, and its been that way my entire life. The doctor said popping your jaw or grinding your teeth can cause problems with your ears. She thinks I have TMJ, so maybe thats something you should look into if you havent yet. 😃 This is just a guess though. Hope you find out what's wrong!

  • Edited

    I haven't read the other replies so hopefully Im not off base with this.

    Ive been dealing with very similar symptoms. The ear you can blow air out of is perforated. There's a hole in it. Three tiny bones inside your ear are absorbing all sounds. It almost feels like the world is vibrating at you. Talk to your ENT about doing a microscopy on that ear. It may just need time to heal or your doctor can patch it. It can be done in office.

    Its also very likely you have eustachian tube dysfunction in both ears causing the pressure and dizziness with fluid build up in the non perforated ear. Ask your ENT about having an ear tube or grommet placed in the non perforated ear to drain the fluid.

    Dont get water in the perforated ear and avoid blowing air out of it.

    Also ask your ENT about getting a CT scan with contrast. The CT scan will show anything out of the ordinary and your doctor will have a better idea of what needs to be done.

    It sounds like your doctors dont want to deal with your issues. Maybe consider finding second opinions from other doctors.

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