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New to Meniere's

Posted , 6 users are following.

Terence_14
Terence_14

51 year old Male lviing in Singapore but found this forum most informative.

Diagnosed last week, after weeks of test and numerous visits to ENT. All test negative or inconclusive hence leading to this diagnosis, to go with my hearing loss, vertigo and fullness in the ear.

Current medicated on 12mg x 3 per day on Betahistine, 1 water pill per day in the morning. And 5mg x 1 per day of Flunarizine in evening.

Am wearing hearing aids on both sides, but still struggling to in most conversations. Been feeling anxious, nervous and have poor sleep everynight because of my hearing loss. 

Considering Gentamicin injections soon. Any one can share about this experience ?

Also thinking if a Cochlear implant will help restore my hearing to a little better or can I consider this ?

 

0 likes, 8 replies

8 Replies

  • Abby1975
    Abby1975 Terence_14

    Posted

    Hi Terence, sounds like you have been having a rough time hope you start to feel better soon. Ive not had gentamicin but had a gromett insertion back in August following diagnosis of MD, ive felt alot better since having this done. I was having vertigo and sickness on a daily basis. Also since the attacks have been reduced i do not have the pressure feeling and my hearing has almost fully returned.  Good luck with your treatment let us no how it goes. Abby
    • Terence_14
      Terence_14 Abby1975

      Posted

      Hi Abby, thanks for yr message. You are fortunate to have your hearing despite having such attacks. Do take care.

      My doctor never mentioned gromett in any of his advice. Is this a device you insert into your ear ? Does it hurt and can you still hear despite the device being inserted ? Terence

    • Abby1975
      Abby1975 Terence_14

      Posted

      Gromett is inserted into the ear drum to allow air to circulate and help reduce pressure changes in the ear, its a very simple procedure a tee shape tube inserted in a theatre environment with local anesthetic. It literally takes less than a minute to insert and I believe the least invasive surgical treatment. It has not affected my hearing and does not hurt at all. I understand gromett is mainly used for children with 'glue ear'. I would suggest having a read up on it on the internet and perhaps a discussion with consultant. I believe it does not help everyone although appears to have been successful in my case. The gromett eventually works its way out of the ear in 6months to 2 years but my consultant advised me that if successful a more permanent tube can be inserted. I have also just started having vestibular rehabilitation which is helping with my balance problems. I started having symptoms of severe vertigo in February this year, with nausea, sweats, brain fog, pressure in right ear and hearing loss, after numerous investigations i was diagnosed in August with MD, i also have two family members who also have same diagnosis. Some days i had to crawl to the toilet and been off work for the past 7 months. I am due to return back to work next week a little nervous but looking forward to some normality in my life. Good luck and i hope your treatment helps with your problems. Abby
  • peter16657
    peter16657 Terence_14

    Posted

    Hi Terence, dont know how long you have had Menieres, but if you were only diagnosed last week it seems  early days to be considering surgery, also hearing loss in both ears is unusual/unlucky with Menieres, I have a book, from Oz titled Meniere Man and the astronaut, the self help book for menieres Desease, please get a copy, its on amazon and read, the author has been through Menieres and come out without surgery or medication, my Menieres got so regular this summer, after 10 years of coping, that I went onto Betahistine no let up whatsoever, in fact I put them in the bin, strangly we recently went to Turkey, I kept complaining to my Wife about the high salt content in all the food, during the holliday I had 2 almost consecutive attacks which unlike previous ocassions left me giddy for the next few days, to the point where we thought I wouldnt be allowed on the plane, as we all know most people who see our attacks put it down to being drunk! the point being the book talks a lot about salt being a major contributor so I am trying to keep my salt and sodium intake down, if nothing else it cant be a bad thing I cant reccomend the book enough, good luck and keep in touch Pete Plenge
    • Terence_14
      Terence_14 peter16657

      Posted

      Hi Peter, thanks for sharing your situation. I feel for you about the high salt content when we are on holiday and there is little option to the food we eat. I will try look for the book on Amazon.

      I agree that going for gent shots in the ear would be too early to consider but perhaps I didn't tell my full story, that prior to being diagnosed with Meniere's I have lost most of my hearing on my right ear for almost 5 years now. I started losing my hearing on my left ear 5 months ago. Doctor reckons that it could have been Meniere causing me to lose my hearing on my right ear all those years ago but wihout signs of giddiness. 

      Because of the rapid loss  in my left side giving me overall poor hearing for a few months now, I consider Cochlear Implant even tho' it seems premature. But it will be on the right ear whereby hearing has been lost for sometime now. 

      Appreciate if you have any further comments or thoughts.

       

  • Stratford
    Stratford Terence_14

    Posted

    Hi Terrance,

    Gosh, I am so sorry for your recent diagnosis but like Pete, I have to agree...there are a lot of people who have gone "through" Meniere's without surgery or anything invasive..if I could give one peice of advice..don't rush things right now.

    Like Pete I bought Meniere Man and The Astronaut The Self Help Book For Meniere's Disease on Amazon...at a time when I was not coping at all. The book gave me something called HOPE. I followed most of the 100 ways to cope with Meniere's in his book and cut down on SALT and gave up coffee...and became aware of something called triggers. 

    I also read Meniere Man and The Film Director: Self Help For Meniere Attacks.

    That was really helpful because the author figured out the nature of the actual attacks. Beginning. Middle and End. Once I knew what was happening,  I was no longer freaked out during attacks and the attacks got less intense the more I was in control. Plus all the other things, like cutting down on salt BIG difference and other suggestions to try. So like Pete..I would say, yes if you can do it, take the reins and control of this terrible disease .A little patience...it is not a quick fix like surgery though..definitely read books on the subject wriiten by people who have been there and got through without surgery first...

  • Stratford
    Stratford Terence_14

    Posted

    Dear Terence,

    Sorry to hear that you are going through all this. I will tell you what ai know and hope some of it is useful and helps.

    Can you get a second opinion with an ENT specialist to have more conclusive diagnosis? You would not want to have any surgeries for the wrong diagnosis..so a true diagnosis so important. Ususally the test for aural fullness and hearing loss are specific and conclude Meniere's with no double guess. Also attacks of vertigo.how many and all this adds up to Meniere's. 

    Hearing loss is progressive with every attack. There are many reasons for hearing

    loss and check that it is not to do with living in a noisy city as my friends was. That shows equal loss on both sides from environmental.

    Stress can cause dizziness and lack of sleep and worry. Avoid any neck massage and neck manipulations. That from my experience makes things worse.

    do look at stress relief with foot massage and any other ways..but not vigorous. Acupressure and acupuncture is good and i know you have very good places in Singapore.

    Another cause of really noisy ears and tinnitus is too much salt and caffeine. Also MSG and salt in diet causes symptoms like noisy ears. Avoid soy sauce! Oyster sauce.

    If you have Meniere's then you would need to look at your diet. How much salt do you eat in all those Singapore dishes with chili sauce, MSG, salt, soya sauce, black beans and etc.

    the first thing may be to fogure out the salt content in food you eat everyday. Anything over 1200-1500 mg per day and meniere's symptoms..vertigo and fullness and everything..will be worse. 

    Also do not put cotton buds in yiur ears or have anyone " clean out " your ears. It will not help you hear better and could cause damage. Put nothing in your ear smaller than your elbow. You could have professional MD syringe to clear ears with water flush..to take wax out that way. i did that and it really improved my hearing.  But you must only do this with a professional doctor. If you have used cotton buds in the past to clear ears..then you may have impacted the wax. Which is what i did. So get the audiologist to check that it is not wax reducing hearing. That it is not environmental city noise..traffic, loud work rooms..causing you hearing loss.

    Cut salt down. Drink more water. Cut out coffee.

    get another opinion..another test. Make sure Meniere's is diagnosed.

    if it is for sure..then you will find books and threads from others who have either had the same symptoms as you and figured out ways to not have these.

    if you have hearing loss in both ears...meniere's will give you unequal loss and so that is why you will struggle with two hearing aids. You would benefit from a visit to an audiologist to see if two is the best for you..or maybe just one until your hearing settles down. One hearing aid may be best if you have meneires symptoms and another one later on...take advice from the best audiologist. The audiologist may shed light on the menieres pattern...it would show on those test.

    Hold off on all surgery until you get a clear picture. You are not alone and we are here for you. Good luck. 

     

  • Remle
    Remle Terence_14

    Posted

    Hi Terence, are you still living in SG? I got this MD too and would like to chat with you.
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