Despair and Losing Hope

Discussion in 'Support' started by MJC, Oct 20, 2015.

tinnitus forum
    1. MJC
      Depressed

      MJC Member

      Tinnitus Since:
      April
      This Monday I went to my ENT appointment - a second Opionion at a new hospital and Doctor.

      1.They did a sound test - no hearing loss.

      2.They checked inside my ears- no fluid or damage visible.

      3. They did a pressure test - no sign of any pressure issues but the day I went I was a good day for my ears ( Sod's law).

      I went to a music event in a club, was exposed to 4 hours of loud music and came out with painful swollen throbbing ears which has become 6 painful months of pain, blocked ears and pressure.

      Each day is different and there is no key indicator why on some days my ears are better.

      Even on the good days the blocked pressure feeling never goes away 100% but at least the pain is not so bad. I have tinnitus in both ears but I am not bothered with the sound.

      I have had accupucture, taking Supplements : NAC + and Gingko.

      I feel trapped and I don't know what to do anymore. The hospital say it's nothing,
      but yet I have this terrible pain and pressure.

      I don't know what to do anymore- my fear is taking over. Today my ears feel like they are about to burst.

      Why can't the doctors help or find anything?
       
      • Creative Creative x 1
    2. Joan A.
      No Mood

      Joan A. Member

      Tinnitus Since:
      2000/ spike 2006/ massive 2009
      Cause of Tinnitus:
      unknow
      Hi mate;

      first don't give up... i know how much is hard. I read that you feel pain and pressure. Have some doctors evaluated you for TTTS (Tonic timpany tensor syndrome)?

      :huganimation:
       
      • Funny Funny x 1
    3. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      Go on a bad day.
       
      • Funny Funny x 1
    4. Danny Boy
      Cheerful

      Danny Boy Member Benefactor Hall of Fame

      Location:
      England
      Tinnitus Since:
      7/2014
      Cause of Tinnitus:
      Ear infection
      Don't go at all...
       
      • Agree Agree x 1
    5. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Same here.
      The same thing happened to me, I suffer terribly with variable aural fullnes/pressure/feeling that they are about to burst, and yet, I do not have a typanograme that indicates this, although I have made a few, because I was on a "good day".
      Pressure in the ears may be from ETD (Eustachian tubes dysfunction). The Eustachian tubes are responsible for maintaining the pressure behind the eardrum equal to the pressure in front of the ear drum, so we don't feel pressure in our ears.
      Wrong pressure behind the eard drum, which gives that pressure sensation and which can make the eardrum to bulge inward or outward can be put in evidence also with an endoscope (a thin tube with a tiny camera and a light at the end of it which, when inserted into your external ear canal, transmits images that are enlarged on a display and also can be recorded). This way a doctor can see that the shape of the tympanic membrane is not right (is "bulged")

      From my experience this endoscopy was better than the typanograme.
      I think that you may have remained after that loud noise exposure with ETD, the Eustachian tubes couldn't keep up, rather than with fluid in your ears. After all, you felt the pressure when you came out of the club, I do not think that fluid had time to accumulate. (In time, though, ETD can cause accumulation of fluid in the ear, which can be infected or not)

      IMO
       
    6. MJC
      Depressed

      MJC Member

      Tinnitus Since:
      April
      @Dana thanks for your reply. What were the findings of your endoscopy ? And what can doctors do if there is the bulge?im desperate now. The NHS hospital service can't help me so I will Prob go private.
       
      • Hug Hug x 1
    7. Fungus
      Dreaming

      Fungus Member

      Location:
      Wild, Wet and Wooly Wales
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Virus?
      MJC, your symptoms are reminiscent of what I had at the start of my tinnitus. You don't comment as to whether you can easily 'pop' your Eustachian tubes by blowing your nose or doing a Valsalva (holding end of nostrils and increasing pressure as you might do on plane descent). I had major issues with trying to equalise pressures, and even noticed, when driving, the pressure changes going up the local mountains caused significant pain.
      I initially saw an NHS ENT doc who was dismissive of the pressure issues and latched entirely onto a small high tone hearing loss (better than average hearing for my age)..He discharged me, saying I would 'get used to it', sothe symptoms worsened and I became very depressed and felt hopeless.
      I then saw a private ENT doc who then transferred my care back to NHS. I had grommets, but soon blocked them due to an ear infection. I now have T-tubes and all the pressure issues have gone.My tinnitus is no better and this is being managed along conventional lines.....but the ghastly pressure issues are gone, and I have the green light to fly.
      So...a long-winded way of saying, maybe see an ENT doc privately, or request a second NHS opinion through your GP...you're entitled to do that. If your ENT doc feels there is something that needs to be done, he/she may well decide to do this treatment on the NHS as it should have been dealt with there in the first place.
      I DO hope you find some appropriate help, and think that it is very frustrating that so many ENT doctors have little interest in tinnitus, so don't push to far to sort it out, rather tell the patient that they 'have to learn to live with it'....a sure fire way to make sure the sufferer can't live with it!
       
      • Winner Winner x 1
    8. MJC
      Depressed

      MJC Member

      Tinnitus Since:
      April
      @Fungus thanks for your reply.

      With refs to popping my ears- I've tried holding me noise and blowing, but I can't
      pop my ears unless I really forcefully blow
      very hard. I don't want to risk damaging my ears further.

      The appointment gone this Monday was my 2nd opinion. All standard tests showed nothing. I asked the doctor about the Eustachian tube being blocked and he said that it could be the case as my pressure chart for the measurement of my ears was not flat. I explained to him that each day is different and the pressure and blocked feeling goes up and down, he said it was due to my ears being sensitive to sound. He discharged me.

      It feels like my tubes have been pushed in or moved by the loud music damage.

      @Dana recommended an endoscopy to see if my tubes etc are bulging.

      It's a shame the NHS doctor didn't take me seriously and that the only way is to pay private.

      When you went private did you doctor find any bulging or displacement of the tube?
      What was your diagnosis before they transferred you back to the NHS?

      Thanks for your time.
       
    9. MJC
      Depressed

      MJC Member

      Tinnitus Since:
      April
      *couldn't be the case that I had problems with my Eustachian tubes being blocked or not working as my pressure graph is and was not flat.

      Typo :)
       
    10. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      A feeling of pressure in the ear does not have to stem from the middle ear or the Eu. tube. After an auditory insult, the inner ear hair cells are damaged (whether visible or not on an audiogram), but may recover. There are salt concentrations within the inner ear fluid that must be maintained at specific levels. The ability to do that is weakened after an auditory insult (without recovery of inner ear damage) resulting in osmotic processes. This is what can be felt as pressure in the ear. This observation is quite common, yet not widely known by the average ENT - as well as members of this board (apparently).

      Attached is the most extensive information on the diagnosis of tinnitus that can be found anywhere - produced by the Tinnitus Research Initiative (there is a flowchart for diagnostic purposes on page 2 - see below).

      You have now been down the path that many others before you have been. Quite tragic given that it is so preventable and often so permanent. A life sentence, in fact. The BTA has recently launched a campaign about awareness in relation to dangerous noise levels. It can be found here:

      www.plugem.co.uk

      But other than that, little is done by the health authorities to protect the public. Including you, unfortunately.

      attheedgeofscience
      22/OCT/2015.

      upload_2015-10-22_12-28-41.png
       

      Attached Files:

    11. Fungus
      Dreaming

      Fungus Member

      Location:
      Wild, Wet and Wooly Wales
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Virus?
      MJC, the second (private) ENT consultant listened carefully to my history and said that, though the ear drums looked OK they probably intermittently retracted or bulged. I also had odd squeaking and crackling noises from the Eustachian tubes.

      The diagnosis was Eustachian tube dysfunction due to infection from the second consultant, and the progress of the condition pretty much bears this out.

      Good Luck

      Fungus.
       
    12. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      @attheedgeofscience

      As this may be the only thread in which we are meeting, please let me express first my absolute sincere and huge admiration for the incredible amount of work you are doing for the T sufferers community. I will "like" and "share" everything as soon as I will make another FB account (the one I have now is compromised and I have to delete it)

      In my defense:
      MJC sounded certain that his feeling of pressure is coming from his middle ears (he is talking about typanometry, which is done for middle ears, and about his lack of success in popping his ears unless he is blowing really forcefully), so because of that I departed from the hyphothesis that his middle ears are the ones that are pressurized.

      Another thing that confused me and took my mind away from the possibility that the inner ears are pressurized, and not the middle ears, was the fact that he doesn't mention the slightest sensation of vertigo, even for the shortest period of time.

      And also that throbbing? How would that be explained? That's the moment I think when I moved my thoughts from inner ears. How could inner ears throb? Can you think of something that would explain the throbbing? Something very weird here and hard to explain.

      I agree with you that after 4 hours of loud noise exposure the first thing somebody would think would be that the inner ears were damaged.

      You are saying, in other words, that he got endolymphatic hydrops, which also causes T, not only pressure feeling.
      Endolymph with wrong salts concentrations and pressure must cause some kind of vertigo problems, as the same fluid also fills the balance structures.

      In the flow chart you provided, one can reach to the diagnosis of endolymphatic hydrops only if he takes route nr 1: non-pulsatile tinnitus -->constant --->vertigo, etc, -->endolymphatic hydrops, in which vertigo is "required" (but MJC doesn't talk about vertigo)

      or take the route nr 2: non-pulsatile tinnitus-->constant-->Hearing loss-->sensory neural -->tests-->acoustic trauma (+) endolymphatic hydrops (but MJC doesn't talk about hearing loss)

      I think you are right and MJC has endolymphatic hydrops.
      I think MJC:
      1) has some undetected hearing loss (not all the tests were done) or even undetectable hearing loss (above 8khz)
      2) had some balance problems but the brain may have managed to compensate that (it has the habbit to do adjustments and compensate a balance problem) so quickly that MJC didn't even notice.

      Please notice that I said "I think that you may have remained with ETD", which is very different than "you have remained ETD", so I express my big uncertainty about what I am saying.

      Did you notice that IMO at the end? Please do. I was very unsure about that ETD, that's why I put that IMO at the end of my message, as a "take everything with a grain of salt".
      @MJC just an expression, "take everything with a grain of salt", just an expression, actually from now on to relief pressure you have to AVOID salt (and sugar), as you will read in the link I put below.

      The only thing that I express with certainty, without "may", is the fact that wrong pressure behind the eardrum can be put in evidence with an endoscope also, not only with tympanograme, and ETD is among the causes of pressure in the middle ears (besides TMJ, etc)

      Well, thank you for that chart and I hope you will keep up the good work in spite of the negative comments and lack of gratitude of some TT members.
      ---------------------------------------------------------------------------------------------------------------------
      @MJC

      So I think you know by now what you have to do:
      -check for some possible hearing loss with all the tests,
      -check the presence of endolymphatic hydrops with electrocochleography, but for that also go "on a bad day"

      For dealing with the pressure, as I understand that this is the main complaint, not the T, you have to watch your diet.
      I recommend this link:

      http://vestibular.org/secondary-endolymphatic-hydrops-seh

      That throbbing, still, is putting my brain on hair rollers. Very intriguing. Maybe several problems occured because of the noise. It'a not like noise is damaging the inner ears, but is leaving other structures absolutely unharmed. Sorry to hear your story, but if T is not bothering you, the hydrops has good chances to get solved, read the article. Not the case to lose hope AT ALL.

      Best wishes to all.
       
    13. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      @attheedgeofscience
      One more thing, if you don't mind:
      Could you send me the link here or via PM to some article(s) that talk(s) about the osmotic process in the inner ear, which changes the volume and the salts concentrations in the endolymph? Like I said, I suffer terribly with aural fullness, and any material about that would be so very useful to me, and to MJC too, of course.
      Thanks.
      If you can't because you can't find it or because of lack of time, no problem.
       
    14. Fungus
      Dreaming

      Fungus Member

      Location:
      Wild, Wet and Wooly Wales
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Virus?
      I really wish our ears had read the text books or that symptoms were truly diagnostic. It would also be a blessing if we only had one diagnosis at one time.
      My own problem does seem to be middle ear, but I seem to have sinus blockage on my left side still after 'flu in February. I also broke my nose in a car smash in 2012. A CT head (prior to 'flu) showed deviated nasal septum to the right.....but I have a horrible thick post-nasal drip on the left which is the side where my tinnitus is loudest and also where my T-tobe opens on Valsalva.
      To compound the problem I have had episodes of vertigo ante-dating the tinnitus by 10 years, and lasting several weeks on occasions. I'm as sure as I can be that this is Benign Positional Vertigo as it is always associated with one ear, is VERY positional and responded to the Eply manoeuvre on two occasions.
      I also have a left TMJ which is 'rickety' and used to dislocate in childhood and had a C6/C7 disk prolapse to the left about 15 years ago.
      Besides the usual hissing/jet engine tinnitus I also get pulsatile tinnitus from time to time in both ears
      Sorry about all the talk of my issues, MJC....but I think the take home message is that a further ENT opinion may well be helpful from an ENT doctor who has interest in the field......most specialists have become somewhat super-specialised.
      The other message from me is DON'T LOSE HOPE. You are in a dark place right now, but things WILL improve. When you find someone who offers you a diagnosis for your symptoms, then you will have a 'name for your pain' and will have something to work with (or against!). The suddenness of onset of my symptoms with severe panic attacks, the lack of empathy of many of the 'professionals', the feeling of utter despair and wish for an easy way out, are things I will NEVER forget. However, 9 months down the line (albeit on anti-depressants) I am coping with the tinnitus and am functioning at my previous level ( a pretty frenetic life). Enjoyment has returned!
      MJC, at the risk of sounding like 'know-all' I'm guessing that a name for what you have is far less important than empathy with your position and a coping strategy. I'm sure both will come to you.

      Good Luck,

      Fungus.
       
    15. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I second this...exactly. Coming from an ICU Nursing background I was stunned to experience for myself just how callous the Medical profession can be to the poor old layperson (I kept my background to myself, which was easy because they never took a serious history from me at any stage).
       
    16. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I won't forget, and I'm still struggling with "forgive".
       
    17. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I was commenting in general, and, also in response to posts in relation to the same post by the OP (created multiple times - search the forum if unclear...). Example:

      www.tinnitustalk.com/threads/despair-and-losing-hope.11643

      See this (unfortunately it is in German):

      www.dasgesundeohr.de

      Indeed. Damage to the middle ear (eardrum) can occur with acoustic trauma, but often it is the inner ear that (always) also suffers. Hence my decision to make a mention of it (since many folks seem to be chasing what I would consider false leads - especially after the outcome of two ENT exams with negative results...).
       
    18. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Please accept my belated thanks four your link.
      If you say the link is unfortunately in German, I would say it was fortunately in German, as this fact gave me a great idea: to ckeck, with the help of friend translater, who has done all his studies in German, from kindergarten till university, the topics I am interested in on German web sites. I could use some Germany seriousness and accuracy, to be honest.

      And what a good decision that was.
      Nothing worse than chasing a false lead. Nothing. It may delay receiving the correct treatment with years, or not getting it ever.

      I see the OP is too bummed out to say anything (or maybe not he is not convinced yet?) I know from experience how difficult is to distinguish middle ears pressure from inner year pressure.

      In case he is not yet convinced, he can check both possibilities (middle ears pressurized and inner ears pressurized) and be sure he is not missing anything.

      I am sure that if this inner pressure is confirmed by electrocochleography or Furosemid test he will be happy for this heads-up you gave him.

      Thanks again.
       
    19. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      @MJC
      On a "bad day" (you feel BIG pressure in ears, inner, middle, doesn't matter) you may do the Furosemid test:
      -take only one pill of the Furosemid diuretic when you have a "rest room" close by, so you can "rest" (pee) as many times as you need.
      The results may surprise you and may be diagnostic for your condition.
      If the pressure decreases, I would put my money on the inner ears being pressurized.

      Best wishes!
       

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