1. Community
  2. Ears, nose, throat and mouth
  3. Meniere's Disease

Symptom free 9 months

Posted , 7 users are following.

steve58456
steve58456

From sept 2016 to April

2017 worse months off my life,diziness once a week and now nothing!!!since then had no symptoms of meneires still taking 32mg bethastine x3,feel like normal again and eating and drinking like I did before,got a ent follow up soon and had a hearing test at work and it’s now back to normal,anyone experience this before or as this horrible disease disappeared for good??

0 likes, 18 replies

18 Replies

  • jim79476
    jim79476 steve58456

    Posted

    Hey Steve,

    Yes, my first attack happened in 2000.  Lasted three weeks. When to an ENT. Told me I had Meniere’s . Put me on a diuretic and told me to watch my salt. Took the diuretic for about a month then stopped. Went back to my old life style and did not have another sign of Meniere’s for thirteen years. I had a very stressful period in my life. This time lasted two months and went away again. I did change my life style some. Lowered my salt intake and tried to manage my stress. Took some different drugs ( none helped) and then came back again April 2017. Been dealing with it ever since. I am 72. Trying to manage it with major life style changes. Anyway, the long and short of it is, Meniere’s is an unpredictable syndrome.  Much good information on the internet. I read every thing I can on the subject. 

    Good luck

    Jim

  • Bluesmann
    Bluesmann steve58456

    Posted

    Good for you steve.....I think the dose of beta you are on is in line with what really works...less for some but the 8mg I was on 2x day did little once I got up to 16 its much better but still with some episodes here and there but not as bad......has the higher dose helped your hearing at all?....ive always felt we need to relive the pressure in our heads and a histine will do that.....seems those who I read are on a pretty good dose have excellent results
  • steve58456
    steve58456

    Posted

    Yes I’ve had no fullness in the ear at all and on my last hearing test I had in November  it was back to normal
  • christine_35821
    christine_35821 steve58456

    Posted

    Hello Steve. Yes same for me. I’m currently on 24 x 3 after my neurotologist appointment three weeks ago. He raised my dose from 16 x 3 to see if the pressure reduces. My life is normal now apart from hearing. I had already lost 50% both sides before this started and have hearing aids. I have to keep a diary of symptoms for my next appointment in 3 months and I’ve noticed that the pressure reduces overnight and builds up during the day. I drive myself crazy sometimes trying to figure it all out and thinking about what might be in store for me. I’m in U.K. are you?
  • steve58456
    steve58456

    Posted

    Yes Christine was on 3x8 then 3x16 but no improvement since I’ve been on 3x32 I’ve had no symptoms at all since it’s been over 9 months now,this time last year I was having a attack at least once a week 
  • NeddyO
    NeddyO steve58456

    Posted

    Nobody knows if you are one of the lucky ones but 70% get better.

    I am now in my second remission period - first 21 months, currently16 months and counting. I was advised to stay on the max dose of betahistine (64mg tds) until at least 5 months with no attacks then wean off gradually.

    Stay on your guard though - if the warning signs re-appear get straight back on your max dose and increrase if necessary. You are luckier than many - I have residual background tinnitus and lower register hearing loss in left ear but that is manageable.

    Best

  • steve58456
    steve58456

    Posted

    In take 2 x 16 tablets 3 x daily 
  • maria63022
    maria63022 steve58456

    Posted

    How did you get your histamine? I am on triammterene still not feeling myself. I am going off since it is a diurectic.Does anyone know about quercetin? has anyone take L-Thanine for anti anxiety?

     

    • steve58456
      steve58456 maria63022

      Posted

      It’s betahistine,get it from your gp.16mg 3x a day all they can prescribe,if u go to your ent they can up the dose what suits you
  • greg333
    greg333 steve58456

    Posted

    Hi Steve:

    Congratulations!!!! My symptoms disappeared immediately when I added a 28mg Betahistine 1X per day. 6 weeks later, and just yesterday I was under a lot of stress which triggered an episode. Since the Betahistine worked, I am wondering if maybe I took a larger dose and when I see you taking 32mg 3X a day and it is working, that is encouraging. Not sure if dosage is based on size, but I am a big guy, 6ft and 225lbs. Did you start with a dosage of 32mg 3x a day or did you start with a lower dose and move up? Thank you 

    • christine_35821
      christine_35821 greg333

      Posted

      Hi Greg. Yes betahistine is based on size. My ent guy said someone my size should be ok on 24x 3 and so far so good. I am 5’ 6 and 9 stone. 
    • steve58456
      steve58456 greg333

      Posted

      Hi Greg I started on 8mg x3 didn’t work then 16x 3 worked for abit then started attacks on a weekly basis so went to ent and he put me on 32 x 3 in March 17 I had 1 mild attack April 17 and since then I’ve had no ear fulness and no symptoms,I had a hearing test a work in November and my hearing was back to normal 
    • greg333
      greg333 steve58456

      Posted

      Hi Steve, this is so encouraging and to know that you recovered your hearing as well, what great news. I pretty much have given up on ever getting my hearing back, so this is definitely something to work towards.   I have done a lot of things and when I started taking the betahistine is when things really improved. At this point, I am not willing to change anything (except maybe increasing the betahistine) in the event the results are a combination of everything I am doing. Here is what I have done so far:

      - daily diuretic

      - Sertroline (Zoloft) daily

      - eliminated caffeine

      - reduced salt intake

      - meditation

      - staying fit and eating nutritionally

      In addition to the Betahistine, do you do/take anything else?  

      BTW, I am a 59-year-old very active and healthy (except for the meneres) male.   Thanks for any additional insight you may be able to share. Truly appreciate this discussion board and the insight from everyone. Greg

       

    • steve58456
      steve58456 greg333

      Posted

      Hi Greg last year I was taking pine bark tablets as well and that seem to make things worse,I was on a low salt diet and no caffeine as well and no improvement,since taking the 32 x3 I eat like I used to and drink coffee and alcohol with no effect,to me the low st diet made my symptoms worse,it’s worth a try see your ent doctor about upping them.good luck 
    • christine_35821
      christine_35821 greg333

      Posted

      Hi Greg. I asked my neurotologist what I should avoid diet wise and he said just salt. So all I have done is stop adding salt to anything and not worry about the other stuff I eat such as bread etc. No canned soup though as it is shockingly high in salt. He also said alcohol is not part of the equation but I am wary of this. The only other thing I try to avoid is stress as this does seem to increase tinnitus. I also do balance exercises eyes shut most days as I was told my balance is comprised one side but compensated well. I still struggle to stand on one leg eyes shut for more than 5 seconds though. Quite infuriating!
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.