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Will it ever stop?

Posted , 8 users are following.

deemogs
deemogs

Hi,  re to the forums as I’m in desperate need of some support. I’ve been battling vertigo, ear fullness, hearing loss and tinnitus for over 4 years now. I’ve never officially been diagnosed with Ménière’s but have been taking betahistine for some time now. I had respite of about a year until about 6 months ago whereby the attacks (mainly in the night or morning) are now coming thick and fast. I constantly feel nauseous and dizzy really. Never seems to let up. I find myself wishing for the permanent hearing loss and the vertigo to go which is madness. But I need something to get better. Does it ever happen?

0 likes, 21 replies

21 Replies

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  • maria77273
    maria77273 deemogs

    Posted

    Oh dear so sorry that it's come back. I have had M now for 13 months. My attacks are becoming less severe but hearing loss has diminished incredibly. I'm waiting for stage 3 of the Desease which tappers off the severity and episodes of M. Can't understand why it's come back so severe after a long break. Perhaps check things in your diet, stress levels etc. have you been doing anything different. Best of luck. We all know what you are going through believe me. 

    • deemogs
      deemogs maria77273

      Posted

      Thanks for caring, I have today come out in a real heavy cold. Wondering if that’s had a part to play. I’ve recently really changed my diet. No salt, caffeine and very little sugar. MD is one of those conditions that we will never really understand I think 🤔 x

  • baggiebird
    baggiebird deemogs

    Posted

    Deemogs...you poor thing know how Ur feeling. This attack will pass. Stay strong and get your gp to refer to an ENT consultant to get meniere's confirmed. If in uk the Meniere's Society offer great support and information. All the best

    • deemogs
      deemogs baggiebird

      Posted

      Thank you. I’ve been under ENT for 4 years but had to change hospitals and the whole process started again. Confirming salt intake, eye exercises, hearing tests. Am indeed in the UK. Never had anything more than a chat and a hearing test where they have told me considerable hearing loss... go away and see how it is in 6 months. 4 years later I am still waiting. 
  • Willow4
    Willow4 deemogs

    Posted

    Sorry your having such a bad time.  Before I was diagnosed I would have severe vertigo especially in the morning.   Have they done any testing, like a MRI, CT to rule other things out that cause MD?   I would get a referral to a neurotologistswho specializes in inner ear disorders.   They will do a hearing test because this disease damages your hearing.  They will also put you through balance testing and a caloric test.  In the meanwhile you need to limit salt to 1500mg a day.  Salt is our enemy.  But the most important thing is to get the right diagnosis. Hope this helps.  
    • deemogs
      deemogs Willow4

      Posted

      Thank you, I have had a hearing test, told considerable loss, go away and limit salt, do these eye exercises, take the betahistine. As I say it was OK for a while and then flared up. Think just having bad time because of cold. I am hoping that it disappears again and I finally get some

      Answers from ENT! 🤞

  • Sbart
    Sbart deemogs

    Posted

    So sorry for you! It's horrible to feel this way. I took a leave from work and went to Cleveland clinic in Ohio and there is a ENT there that specializes in vestibular disorders. He gave me a series of steroid shots into my cochlea and I have been in remission for 9 years!!! I have small episodes here and there but not even close to the debilitating vertigo as before. If you want his name I think he is still there. Let me know. He saved my life from this!

    • deemogs
      deemogs Sbart

      Posted

      Thank you, oh I wish. In the UK so quite a ping way to come 😱😉 my husband and I are discussing going private so can get some answers. 

    • Sbart
      Sbart deemogs

      Posted

      Yes that is too far to come. That is the only thing that helped me. Why couldn't your ENT email mine and discuss this injection?? Just a thought

    • diane04068
      diane04068 Sbart

      Posted

      Hello Sbart. I would like the name of the Ohio ENT for vestibular disorders. I need someone to save my life from this disease!
  • NeddyO
    NeddyO deemogs

    Posted

    Get your diagnosis nailed down as others have already said. If you can, increase your dose of betahistine to twice what you are currently taking and if necessary go to a higher dose still to get full relief from nausea and vertigo. Remember betahistine takes a month to become fully effective against Meniere's and you need to stay on the highest effective therapeutic dose for 5 to 6 months without attacks before slowly weaning off.

    But it wont work if something else is causing your symptoms like BPPV which is why you need a proper diagnosis from an ENT consultant.

    Good luck.

    • deemogs
      deemogs NeddyO

      Posted

      Thank you. I am on 16mg 3 times a day and have been for quite some time. I must admit that I stopped for a while as was in remission it seems and now have to build back up again maybe?! I really appreciate all your support. Have a massive cold now so that must have had a part to play in it getting so bad again. Am hoping this gets better quick. It’s gpos to

      Know there are others out there with success stories too x

    • maria77273
      maria77273 NeddyO

      Posted

      Needy what is BPPV. Should probably know but so many abbreviations for things. Thks
    • NeddyO
      NeddyO maria77273

      Posted

      I don't THINK I'm needy!!

      BPPV stands for Benign Positional Paroxysmal Vertigo. Although its cause is nothing to do with Meniere's disease it has a higher incidence per thousand of the population so up tp 30% of Meniere's sufferers also get BPPV including me.

    • deemogs
      deemogs NeddyO

      Posted

      Hmmm. Might be worth me looking into this too! Made a massive mistake of taking some night nurse last night, checked it with the pharmacist and he said ok to take. It’s only when I checked today because it’s put me totally off balance that I see it has antihistamine in it! Having a cold is always challenging but with MD as well it’s horrendous 
    • maria77273
      maria77273 NeddyO

      Posted

      Sorry Needy hah oh I meant Neddy. Just trying to be funny. Thks for info not sure if I have this. I'm only slightly dizzy sometimes but when the attacks come on different story. 

    • NeddyO
      NeddyO maria77273

      Posted

      People who have BPPV use an exercise called the Epley manouevre to get rid of the problem. You can find videos on Utube on how to do it. It is completely safe and will do no harm even if you make a mistake. You could use the first part of the routine to test if you have it. Sit on a bed so that when you lie back your head will be hanging just over the edge. Having got yourself correctly positioned turn your head 45 degrees toward the bad (or worst) ear and upwards at 45 degrees. Then lie back as described above. If you have BPPV within a few seconds you will get dizzy and if a friend is watching carefully they will see your eyes flicking back and forth (nistagmus). The vertigo should stop within 30 to 60 seconds - if not there may be something more complicated than BPPV going on!

      You can then repeat for the other ear.

      If you try this I hope it turns out negative - although it can be relatively easily managed it is a nuisance we could all do without.

       

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