Suggestions for What Is Wrong with Me

Discussion in 'Support' started by danieluk, Oct 1, 2016.

tinnitus forum
    1. danieluk

      danieluk Member

      Location:
      Birmingham, UK
      Tinnitus Since:
      02/2010
      Cause of Tinnitus:
      Unknown
      Any one have any suggestions what's wrong with me?

      Since a spell of vertigo in 2007 that lasted a minute or so, i feel like im in a dream constantly, this hasn't changed.

      2010, high pitched fluctuating noise in right hear, this has never gone, competes with background noise, quiet some days louder others.

      2010, deep quiet rumbling started, fluctuates

      2012 started to notice mid-tone noise, this is the loudest of all in quiet rooms

      2012 onwards spells of fullness in right ear, started off rare became more frequent over the years

      2015 pressure is now painful, very regular ear aches and fullness.

      Few times a month hearing in one ear decreases immediately before a loud tinnitus spike that fades over a minute, followed by feeling of fluid and fullness for hours to days after. The has been going on for a while with the right ear, Left ear has started joining in with the right with the pain and fullness

      I very rarely have vertigo, maybe once a year only lasting minutes. Back to normal within a day.

      ENT says Eustachian dysfunction, but the feeling just isnt the same as when you have say an ear cold, its different, my ears will still pop throughout the ear aches and sounds aren't muffled. Not once has a doctor observed any fluid in the 20 times they have looked whilst ive had the pressure sensation (Except when i had the flu)

      What on earth is up with my ears! I cant sleep, cant work, cant go anywhere as places are just too quiet and i panic. I live with a pair of headphones and surround myself with fan grrr.

      I should mention for years my parotid glands have been hard and swollen. They never change size. I have some hearing loss too. Im more sensitive to loud sounds, but this doesn't cause me distress. Had one mri at in 2010 showed nothing, due another next week.

      Any ideas? Thank you all.
       
    2. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      It might be best to go back to ENT and ask for help since they know about your ETD. Anyone that has tinnitus I don't recommend using headphones even at low volume. Since you do, try to keep the volume low as possible and not wear them for long durations. Surrounding yourself with sound all the time in my opinion isn't a good idea, as you are not giving your ears a rest and not giving your brain a chance to habituate to tinnitus. Try using a sound machine at night keeping the volume low.
       
    3. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      Calling this ETD is a bit like calling a stroke a "bit of a headache".
       
    4. Coyotesheaven
      Depressed

      Coyotesheaven Member

      Location:
      Utah
      Tinnitus Since:
      02/18/2015
      Cause of Tinnitus:
      Acoustic Trauma, Dysautonomia/Vascular
      Could be ETD as the ENT said. It can certainly occur without the presence of fluid, and even if you can pop your ears. Did they prescribe nasal spray or steroids for you? Might help, but ETD is tricky to fix.
      Do you have any TMJ issues as well? The E-tube tube is basically a muscle, and if there is surrounding muscle tension around the E-tube then it can start behaving weirdly as well, and may be stubborn with opening or keeping the pressure gradient in your middle ear consistent.

      But given your dizzy symptoms and ear fullness, it seems like there could equally be something wrong with your inner ear. Could also be a mild case of hydrops, as you have all the symptoms. Not to confuse it with Meniere's disease, as this can develop independently of that condition and is not as serious.

      Were you evaluated for other middle ear symptoms, like otoschlerosis, and is your ossicular chain in good shape? What does your audiogram look like?

      Since this has been going on for such a long time I would schedule and appointment with an otologist or neuro-otologist to rule out any inner ear conditions. Do you have any of these specialists near you?
       
    5. danni1979

      danni1979 Member

      Tinnitus Since:
      1994
      Cause of Tinnitus:
      unknown
      I have similar symtpoms and been diagnosed with vestivular migraines.migraines arent "just a headache",its a neurological and you often get symptoms wothout the actual headache x
       
    6. tinnitube
      Supportive

      tinnitube Member

      Location:
      Viña del Mar (CHILE)
      Tinnitus Since:
      08/2105
      Cause of Tinnitus:
      damn virus
      I dont know if you've done , but ask for tonal audiometry . look into the mid and low frequencies if you've got hearing loss lets say , below 5khz and in general your high frequency are okey for your age , one must think "hydrops" . Having a contrasted MRI study from inner ear , we call it "estudio de fosa posterior" that means posterior fossa study is a good idea also to rule out anything strange . Sometimes Meniere or Hydrops starts like that , but one need to look into the audiogram first . Keep allergies away from you . Talk to an otoneurologist , in general ENT doesn't have enough experience , but otoneurologist are very sensitive in making this type of diagnosis . Or an ENT with experience in vertigo , but its better otonerulogist .
       
    7. The Red Viper
      Angry

      The Red Viper Member Team Research

      Location:
      US
      Tinnitus Since:
      March 15, 2016
      Cause of Tinnitus:
      Current Theory: Leftover infection ETD + neck muscle injury
      Could be Meniere's?
       
    8. danieluk

      danieluk Member

      Location:
      Birmingham, UK
      Tinnitus Since:
      02/2010
      Cause of Tinnitus:
      Unknown
      Thank you for the replies

      Waiting on the result of the mri now, i expect it will show nothing. Unfortunately I have to surround myself with noise im afraid, id pretty much jump head first out the window in panic if i didn't, it very very loud in silence. I come out of the hearing exam rooms shaking with fear after being forced to endure it the noise for a few minutes. I do keep everything as low as possible though.

      As the therapist confirmed last week, Ill never adapt to mine as its changes wildly. He pretty much told me to carry on as i am and try to cope as best i can. Seems i have it worse than most.

      Since posting the pressure feeling has again increased, feels like something is in my ear grrr.

      Id never heard of hydrops before, i agree that does seems to me to be the most likely cause. ENTs havent once mentioned it or menieres to me . Ill see how i go about seeing a neuro-otologist. Id have thought id have been referred to one if they thought i needed too. but hey its the UK NHS, health care is free but not always that great depending on where in the country you live.

      Im pretty much doomed whatever the cause :(
       
    9. stophiss

      stophiss Member

      Location:
      Florida
      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      too full a life
      My suggestion is...and only a suggestion....address your anxiety and your health will improve.
      All the best.
       
      • Agree Agree x 1
    10. Michael Leigh

      Michael Leigh Member Benefactor

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      @danieluk

      Hi Daniel,
      Although no two people experience tinnitus the same, most of us know how debilitating it can be when it is severe. You have said that you live with a pair of headphones? Does this mean that you listen to music through them as often as possible to mask (completely cover-up) the tinnitus? If you are doing this it is not such a good idea.

      In the majority of cases, I don’t recommend anyone with tinnitus to use headphones (even at low volume) and especially when it was caused by noise trauma. However, since you get some relief when using them, I suggest keeping the volume as low as possible. In addition to this, make sure you can hear the tinnitus slightly above the music or whatever source material that you are listening to.

      Completely masking the tinnitus so that it can’t be heard will prevent your brain from habituating to it. As soon as the masking sound is removed or temporarily stopped, the brain will immediately focus back on it and it will appear to be louder and more intrusive which will increase stress and anxiety. This will have a direct impact on the tinnitus making it even louder. It can become a vicious circle if one isn’t careful.

      Nothing is perfect in this world and like anything the NHS has its problems. You are correct, depending on location will sometimes determine the quality of care available. Unfortunately, this does apply with conditions such as tinnitus. Important things like hearing tests, MRI scans and blood screening etc will be done at the majority of hospitals. Problems can arise when a person needs help with tinnitus management and treatment. CBT, TRT, counselling and white noise generators for instance, are not available in every hospital. However, in most cases if a person is able to travel to a hospital where treatments like the above are available, they can get this care free of cost. This might not be ideal but at least the care is there.

      No private healthcare within the UK can equal or better the NHS for the long-term treatment and aftercare for tinnitus. I was told this by my GP 20 years ago when I wanted a referral to a private tinnitus clinic. Twenty years on, I am still under the care of my hospital and if there is a problem it is usually sorted out. I was recently fitted with two new digital white noise generators free of cost.

      The stress and anxiety that you are feeling, I believe can be addressed once you are referred to a Hearing Therapist for tinnitus counselling and treatment. Hopefully, CBT or TRT will be available at your location or you are able to travel to where you can access it. Your life isn’t over although it might feel that way at the moment. Tinnitus counselling can help a lot in removing and demystifying the negative thinking that is often associated with tinnitus, so don’t give up as a lot can be achieved.

      I hope that you start to feel better soon.
      Wishing you all the best
      Michael

      PS: Medication is also something to consider, have a word with your GP or ENT consultant.
       
      Last edited: Nov 2, 2016

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