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Diagnosis?

Posted , 7 users are following.

kilikaz
kilikaz

My husband is having his MRI scan today.

Husband history is

Last August had episode of severe N+V Vertigo Tinnitus - wanted to die and was petrified.  This lasted the day leaving him exhausted.

Pattern now is raised tinnitus (he constantly has low level tinnitus from damaging his ear many years ago) for 1 or 2 days followed by vertigo (no N+V) Vertigo lasts a few hours (bed ridden) and leaves him exhausted.  From August these episodes have increase especially in the last couple of months.  On his last episode, he lost his hearing but that seems to have returned.

Triggers seem to be noise, (even watching tv) tiredness (he sleeps a lot), anxiousness and vibration - which he tries to avoid. 

I've mentioned before not happy with GP, he suspect labyrinthitis. He said only to take betahistine as necessary at an attack.  He said that the drug company are just trying to make more money by saying take it constantly. If MRI scan comes back with nothing - what should I do next?

Ask for referral to ENT?

Husbands fears are that if diagnosed - what is his future?  Will he lose his driving licence?  However, life cannot continue as it is. 

In my mind I would like someone with knowledge to access my husband and tell us what this is and how to manage it or fingers crossed tell us it will go away!!

Our life revolves around this right now - constantly guessing how to manage it.  At the moment he is walking around with an ear plug in.

Any help gratefully recieved.  BTW - this group is a great comfort.

 

0 likes, 12 replies

12 Replies

  • miranda72220
    miranda72220 kilikaz

    Posted

    Take him to see an atlas chiropracor. I did and ha ent had an attack since i started treatment. Esp if he has had an blunt force trauma to the head or been in a car accident!
  • JMJ
    JMJ kilikaz

    Posted

    Hi kilikak,

    Yes, I agree with you — asking for an ENT referral would be the next step.   Sounds like he's experiencing classic symptoms of MD, and might benefit from additional treatments that are available. 

    A low sodium diet, and a diuretic are the first lines of defense with most MD patients, to help the inner ear from becoming congested with fluid (hydrops).  Additionally, an ENT might offer much higher doses of Betahistine, as well as inner ear injections with steroids.  

    You have my sympathy.  I also suffered for a solid year while failing conservative treatment.  I'd say that you both have suffered enough.   When it's active, your whole life revolves around the MD symptoms and their upredictability.  I hope you'll be able to get in to see an ENT in short order. 

    Take good care, 

    J-

  • kilikaz
    kilikaz

    Posted

    Back from MRI and husband is not great - think worry of MRI and the noise has taken its toll.  He feels useless...  They say 2 weeks for results.  So we wait and see. 

    We have cut down on salt.  He hasn't drank alcohol for over 18 months now.  He has even cut down on his cups of tea - that is huge!!

    Thanks re advice on what next!!

    • JMJ
      JMJ kilikaz

      Posted

      Best of luck to you both.  MD was a very tough thing for me to accept...still is, at times.  But I do better when I try to practice acceptance and staying calm.  I used to feel so guilty when I had to lie down....and I only hurt myself by trying to physically do what I was unable to do .   So, I hope you'll both have tremendous compassion for yourselves, do what you can to make things less severe (did you read about the mirror trick in past posts?), and know that there are solutions out there.  It's sounds like it's just going to take some time to plug into them.  Please know that we're all here to support you, anytime you want to share what's going on!

      Take good care,

      J-

    • kilikaz
      kilikaz JMJ

      Posted

      Thank you, very much appreciated.  Would love to know about any solutions, hints or tricks that have worked for others.  Mirror trick???
    • miranda72220
      miranda72220 kilikaz

      Posted

      Please google atlas chiropractice and meniers! Im 26 it was taking over my life and i have a 2 year old. Another lady on this group suggested i look into it and its been 12 weeks since ive had an attack (i was having 3 attacks a week lasting up to 6 hours)
    • JMJ
      JMJ kilikaz

      Posted

      Several months back there was a sort of "tips and tricks" thread, though I can't seem to find it now.  But several members found relief during vertigo, by looking straight into a hand mirror during the attack.  Somehow, by staring into the mirror, the eyes override the ear's (faulty) signal to the brain that the room is spinning.  As soon as the sensation begins, you grab the mirror and keep staring until it subsides.  

      Maybe worth a shot?!  

      Take good care!

      J-

  • NeddyO
    NeddyO kilikaz

    Posted

    I replied when you started previous discussion.

    You need good ENT and Consultant Aural Physiologist advice (will be within hospital Audiology department). And if possible find a better informed GP.

    My history not disimilar. Long story short. Once on betahistine (which needs at least a month to become fully effective) hearing improved and tinnitus reduced to tolerable background. Reduced frequency but did not stop attacks. Consultant Aural Physiologist tripled betahistine dose to 48mg tds which did the trick. I was to continue at this level until 6 months without attacks, then wean off. Worked and had 21 months clear!

    When warning signs returned (ear fullness, increasing tinnitus, unexplained vertigo) was instructed to go straight back on high dose and not wait for full blown attack. Reason -  every episode likely to increase permanent hearing damage. Dose subsequently increased to regain full control. Now weaning again.

    Please do not get led down alternative therapy paths, they do not have scientific validity whereas betahistine was developed for meniere's and is backed by rigorous studies.

    Do not lose heart - 70% of sufferers recover.

    And if betahistine does not deliver the goods the likely next (well researched) step will be a steroid injection into the inner ear. Good luck.

    • rich
      rich NeddyO

      Posted

      Do you have any evidence that you could point me to that I could ..or anyone else, the OP come to that... could then point to when their GP or consultant maybe quibbles about upping the dose ?

      I started betahistine PDQ after your advice and it seems to be pretty well tolerated so far, though only two weeks in. I did have a month's course when they thought I had labyrythitis at the start of this, but no-one explained that you need at least a month before anything "happens".

      Thanks. Rich ( NHS South West UK )

    • NeddyO
      NeddyO rich

      Posted

      Prof Michael Strupp in Munich is the leading authority and researcher on Betahistine and he has some patients on astonishingly high doses. It is primarily because of his work that some UK Consultants are advocating higher doses . My consultant is a fan needless to say!
  • sarah3365525
    sarah3365525 kilikaz

    Posted

    Many ENT doctors thought I had Menières and this continued for nine years until a neurologist ENT doctor used the ECOG test (non-invasive) and figured out I don't have it. This test is hard to find but it's important to find someone who is innovative and will do all the tests possible to find out what it is.

    • kilikaz
      kilikaz sarah3365525

      Posted

      Thanks Sarah,  We're still waiting results of MRI and searching for best ENT person locally, so this will help.  Did they find out what you did have and has it helped?

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