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New here just been diagnosed.

Posted , 12 users are following.

justin_1964
justin_1964

Hi all, l have just been diagnosed with Ménières, my mother has it but her symptoms are different from mine, l just wanted to run a few things passed some of you on here to see what help and advice you could give me. It is my right ear that is effected it constantly feels blocked, my tinnitus is in both ears and is very loud, l get what l call cluster head aches on my right side, l stumble a lot as if l have tripped over my feet and l always fall to the right, l have terrible sickness and dizzy spells and can spend hours over the toilet, a lot of my attacks happen in the early morning about 3-4 when l suddenly wake up and it's like I'm laying on a trap door and someone suddenly opens it and I'm in free fall, this can last anything from 10 seconds to hours, but it's what happens after that is starting to get me down.

After the free fall l will manage to crawl to the bathroom and be sick then craw back to bed and just try and hold on, l feel cold, very very cold but also have sweats, l then get what l call the judders that can last for ages, then comes the panick and the anxiety, then comes the fatigue and l manage to fall asleep, and l can sleep for days. This is a scaled down version, the last attack lasted 3 days with 2 days to recover. When they did my balance test the right ear was 49% deficient, and it did seem that my right eye, right ear and brain were not talking to each other. After a very nasty physical attack in 1993 l do suffer from PTSD so l can see how some of the Ménières is feeding into that and sparking it off, ie the panick and anxiety attacks as my brain and body don't know what is going on, l was just wondering if any one out there goes through any or all of these or can give me any advice as just how you cope, l am on Betahistine 16 mg 3 times a day, Fluticasone nasal spray (constant smell of smoke) and have now been put on Topiramate as they think migraines might be starting off the attacks. Well that's it, if you have got this far thank you so much for reading this, and any help advice or what ever you can suggest would be great fully taken on board.

Yours very great fully 

Justin 

3 likes, 30 replies

30 Replies

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  • christine_35821
    christine_35821 justin_1964

    Posted

    Hi Justin. What a terrible time you are having just now! I am on the same dose of betahistine as you and so far this has helped control the vertigo. I was only diagnosed in July but had symptoms from last December. I was very unstable for the first 6 months and my vertigo attacks could last for a whole day with continuous vomiting. I assume you have cut down on salt and caffeine and absolutely no alcohol?  I personally don’t use much salt or caffeine and haven’t found cutting these out completely any help but you have to find out what helps and we’re all different. I have heard of many people on this site who take much larger doses of betahistine in order to stabilise and tomorrow I have an appointment with an ent who specialises in Meniere’s and other vestibular disorders. Have you been seen by a specialist?  I haven’t had a vertigo attack since being on betahistine but I have started having fluctuating hearing and lots of ear pressure hence the appointment tomorrow. I currently have what sounds like a jet engine in my head which is distracting to say the least. Maybe you need further assessment by a Meniere’s specialist?  It’s a very isolating disorder and with your other issues it’s not surprising you are finding it difficult to cope. I do hope you are able to get more help. 
    • justin_1964
      justin_1964 christine_35821

      Posted

      Thank you for your reply, l am not a big salt or caffeine person, l do like a drink now and then but am changing my whole lifestyle to accommodate this, it's just a shame my bosses ain't as sympathetic, lol.

      regards

      Justin

  • clifford64549
    clifford64549 justin_1964

    Posted

    Holy Moley, my friend you have gone through a lot!

    I now use MQ Motion Sickness patches, one under the ear (affected one) and one on the belly button. Someone recommended this on this forum and I find they work very well for me.

    I really hope you find something, pump the betahistine (it takes about 3 weeks to really kick in)

    All the best,

    Cliff

    • yolanda29073
      yolanda29073 clifford64549

      Posted

      Hi Clifford, if you don’t mind me asking, I have been hearing a lot about these patches, are they available on the NHS? Am seeing the Gp tomorrow so may ask about it.
    • clifford64549
      clifford64549 yolanda29073

      Posted

      Hey Yolanda, I do not know; I live in South Africa. You can buy them on Amazon (fairly inexpensive) and they will deliver within 2 days. The correct name is MQ - Anti Nausea Relief patch 100% herbal.

      There are 30 patches in a box. 

      Does nothing for tinnitus, but helps a lot with balance, dizziness and life style. It is really amazing if you get nausea associated with an attack or your brain playing tricks on you.

      Cheers and go well

      C

       

    • justin_1964
      justin_1964 clifford64549

      Posted

      Have not heard of the patches so will have to look into this, still very new to me, cheers Clifford.

      regards

      Justin

    • justin_1964
      justin_1964 clifford64549

      Posted

      Thanks mate, have not heard of the patches before, as l said this is new to me will look into it.

      Regards 

      Justin.

  • yolanda29073
    yolanda29073 justin_1964

    Posted

    Hi Justin am so sorry you are going through that. I’ve been through it as everyone else on here, it’s not easy. What helped me on the bad days was to try and focus on the positive, speak to friends and family, they may not get it initially but they will, if you have to show then some of the history here and point to then that that’s how you feel regularly. Am on the same medication Betahistine, although I don’t have Ménières I have Vestibular migraines, but they share symptoms. Try looking at changing some things in your daily life and diet, that seems to help people here. (I removed chocolate, salt, don’t smoke or drink alcohol, pay attention to certain foods and diet drinks, watch your environment I.e: lights, stress, smells etc)

    • justin_1964
      justin_1964 yolanda29073

      Posted

      Thank you yes l am doing all you say and changing my lifestyle as well so watch this space, thanks for the reply.

      Regards 

      justin

  • Willow4
    Willow4 justin_1964

    Posted

    Welcome Justin

    This forum will help you a lot. Unfortunately, not one of us are the same but very similar.   Find a good doctor with experience in Menieres , follow a low salt diet.   Allergies, Migraines and stress play a huge roll in this disease.  Good luck to you

    Will

    • justin_1964
      justin_1964 Willow4

      Posted

      Yes l am finding out about the stress and migraines, just a shame my bosses don't see the same thing. Thanks.

      Regards

      Justin

  • Bertman
    Bertman justin_1964

    Posted

    Hello Justin, Thank you for sharing, very sad but interesting story, I too have migraines and I take topamax as a preventive and Sumatriptan for when they start, I never had any headaches prior to having meniere's disease, my neurologist states that there is a connection between the two illness's If you are not taking Sumatriptan, you might want to give a try. I know how devastating migraines can be. My issue started on the left side with meniere's, and over the years it has progressed to include the right ear, making my situation bilateral.

    In the beginning I suffered violent vertigo and dizziness with all the fixins. The tinnitus is absolutely ridiculous. 

    The tinnitus is now in both ears, and my hearing is bad, no hearing in left ear, hearing loss in right ear. I wear hearing aids for communication. I can't offer you a lot of helpful ideas, but i will tell you that I do understand your situation completely. I'm sure you are probably controlling your salt intake at this point, I had tubes placed in both ears and that did help with the pressure in my ears. I would suggest that you might try balance therapy, it does help some people, not very effective on me though. But everybody is different. I wish you the best and its good to have you posting here with us. We are all stronger in numbers! 

     ¯`v´¯wink Thinking of you!  

    `*.¸.*´ and we all send prayers during this

    ¸.•´ ¸.•*¨wink¸.•*¨wink difficult time, We are beside you! 

    (¸.•´(¸.• (¸.•´¸¸.•¨¯`•.¸¸.? Bertman 

    • justin_1964
      justin_1964 Bertman

      Posted

      Cheers Bertman will let you know how l get on, thanks for the information.

      regards

      Justin

  • karen40537
    karen40537 justin_1964

    Posted

    Justin:  I see that you mention you have been prescribed Fluticasone nasal spray, do you find that this helps with the smell of smoke? I constantly have the smell of smoke as well.  I am currently on Betahistine 24 mg twice a day.  Thanks Karen 
    • justin_1964
      justin_1964 karen40537

      Posted

      Yes Karen it has helped me no end, l used to work as a memorial mason and would be out in the country side all day so l never new if someone had a bonfire or not, and was too embarrassed to ask my work mates if they could smell smoke, it was only when l was out with my wife and l would say "can you smell smoke??" 99.99% of the time she would say no, sometimes it was so strong it would take your breath away!! But now l only get it occasionally, l hope you can get some and it works for you.

      Regsrds

      Justin

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