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Is this Meniere's?

Posted , 8 users are following.

antscott
antscott

Hi 

I am having a lot of fun with the following symptons:

- Loud Tinnitus

- Dizziness 

- Disequilibrium (sort of brain slip feeling)

- Brain Fog and disorientation 

- Distorted hearing but no significant loss

This is coming from the left ear, i've had T since 2005 but it was nothing like it is now, the dizziness and related issues i experienced in a short spell when T first came on but last Nov/Dec the symptoms lasted for weeks and now they're back again.

Last year i was seen by an ENT who put the dizziness etc down to stress from T but now the symptoms are back I've requested to see a neurologist.

However this could take weeks maybe even months, i really need a diagnosis so i can direct my energy into getting better. The waiting around is killing me.

Has anyone had similar symptons and been diagnosed with MD or something else, what should i be doing at this stage, any meds and VRT exercises that might help?? 

Can something be done in the early stages to prevent major hearing loss and vertigo, maybe a steriod injection? 

Any help will be hugely appreciated

 

0 likes, 12 replies

12 Replies

  • helen02130
    helen02130 antscott

    Posted

    I have the exact symptoms and they have been really bad for two months now, the dizziness tablets they put me on made me worse so I decided to come off them.I am taking vitamins B5,B6 and Ginkgo Biloba ( which was suggested on here ) that's been over a month now but no change. I have no answers for you all I know is i just want to feel normal again.

  • eleftherio33095
    eleftherio33095 antscott

    Posted

    This does indeed sound like Meniere's Disease, but this needs to be confirmed clinically.  Your ENT doctor apparently did not see you with seriousness.  I would suggest a seperate ENT doctor.  With your symptoms now, there is no way MD will not be suspected.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • antscott
      antscott eleftherio33095

      Posted

      Thanks for your reply.

      I will probably have to wait to see the neruologist first before i can see another ENT, this could take weeks.

      What should i be doing in the mean time to help? 

    • eleftherio33095
      eleftherio33095 antscott

      Posted

      In the meanwhile, keep fluid intake to the average level.  Do not drink too much.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

    • liz11458
      liz11458 eleftherio33095

      Posted

      Could you explain why fluid should not too much and keep average. We are often told to drink plenty. Also what is the tingling sensation we feel in our head. Thanks for all your support on this site from us all
    • eleftherio33095
      eleftherio33095 liz11458

      Posted

      What we are told does not apply in your specific case.  Too much drinking will increase the fluid in your inner ear beyond acceptable levels (endolymphatic hydrops).  The latter contributes to your symptoms.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

  • NeddyO
    NeddyO antscott

    Posted

    Certainly sounds like MD but accurate diagnosis is essential so ask your doctor for referral to a consultant auralphysiologist if possible. Xray and MRI scans will be needed to rule out other causes. In the meantime ask your doctor to prescribe betahistine tablets (at least 16mg tds), a drug designed to reduce pressure in the inner ear and hence tinnitus, vertigo and hearing damage. There is good science backing for this. However it is not a quick fix (and you may need a much higher dose over 6 months to 2 years - my experience) so you also need a strong anti nausea drug to calm things down when you are having a bad time. Stemetil, Buccastem and Stugeron are all quite good.

    PS If you are in the UK the NHS is supposed to give you a consultant appointment within 18 weeks of referral - plenty of time for more damage to occur so if you can afford it ask for a private appointment.

    Good Luck

    • antscott
      antscott NeddyO

      Posted

      Thanks Neddy

      I have some 16mg betah tabs left from a previous subscription, will get on to these again, what dose do you recommend? 

      I live in the uk, any recommendations for a private practitioner?

      I've read that antiviral meds help a lot of people, have you given these a try?

    • NeddyO
      NeddyO antscott

      Posted

      No experience with antivirals - suggest you start on the betahistine with the max dose you were on before, if no improvement after a few days increase dose. You should involve your GP in these decisions and take his advice on which private consultant in your area will be best for you.
  • just_john
    just_john antscott

    Posted

    antscott,

    What you are experiencing is exactly how my Meniere's started and developed.  "Stress" is what doctors diagnose when they really don't know what's happening.  Find a doctor who knows about Meniere's.

  • JMJ
    JMJ antscott

    Posted

    Hi, 

    I'm so sorry that you're experiencing the symptoms of MD, and that now you're facing a long wait in order to get things sorted out.  

    RE: " Can something be done in the early stages to prevent major hearing loss and vertigo, maybe a steriod injection? "

    By the time I was finally referred to the otolaryngologist who began the steroid injections, MD had already done a lot of damage to my hearing.  

    I understand the traditional thinking behind trying conservative measures first, before moving on to more invasive procedures.  However, those of us with severe cases that simply don't respond to conservative measures, end up with a lot of damage to the hearing apparatus of the inner ear (not to mention complete loss of overall quality of life) while we're waiting around for months to see if the conservative measures are going to work.  

    Study after study repeatedly mentions the absence of side effects associated with intratympanic steroids as well as the low risks associated with the injection procedure, itself.  It confounds me, why a single injection might not be recommended as the beginning of any MD or sudden sensorineural hearing loss treatment protocol.   Once the disgnosis has been made, why not err on the side of caution, when it comes to something as precious as your hearing?

    Sorry.  I guess that was a bit of a rant.  I hope you get to see a specialist, soon. In the meantime, however, a low salt diet (less than 1500 mg sodium/day) and the elimination of coffee and alcohol, are standard conservative measures.  It can't hurt, and it might help.  And, you'll be ahead of the game, when you finally get in to see someone. 

    I wish you all the best,

    J-

     

     

  • jacki999
    jacki999 antscott

    Posted

    My symptoms started with hearing loss nothing else. Then over the years (now 3yrs) I've got tinnitus, vertigo and complete loss of balance - episodes last between 1/2hr to up to now 6 wks.

    Recently was diagnosed at Ménière's - but have been treated as such since the balance problems

    Gone through all the drugs and nothing is now working for me, but did help for the last 2.5yrs.

    Recently had grommet fitted and now planning on gentamicin injections - this is a pretty much last resort.

    Being diagnosed with Ménière's has made no difference - have been seen by ENT for the past 3yrs and treated as meneieres although no one was ever really sure until recently.

    I wish you well - I'm 50 and in the UK

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