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Not diagnosed with Ménière's

Posted , 10 users are following.

MackH
MackH

Hi,

I have been having very bad bouts of vertigo and nausea and am now in week 9. I have not been diagnosed with Ménière's Disease but my Dr said it sounds likely and it would be very unfortunate! I had a brain CT scan two weeks ago and am still waiting for results from that.. as my doctor said 'to rule out anything more sinister'... I had a terrible attack last night and am feeling weak and below par today though still at work. It is really starting to weigh heavily upon me now that this could be a life long illness. Like you I cut out caffeine, alcohol and salt and am still very strict with my diet. I find I am thirsty all the time. The past two weeks I have annoying buzzing in my ears that is probably tinnitus.. How are you feeling now? Some days I sleep so badly and am awake from five am every morning. I just want some answers and soon. Am waiting for an ENT appointment.. as I live in N Ireland my Dr said it could take awhile.. I live and wait..... Any thoughts?

0 likes, 41 replies

41 Replies

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  • JMJ
    JMJ MackH

    Posted

    Hi,

    Welcome to the forum.  You'll find lots of support and good advice here.  There are MD patients of all ages, at all stages of the disease, and with lots of experience.

    It really does sound as though you have MD.  Hopefully your doctor will put you on a potassium sparing diuretic soon; Although you'll have to still maintain a low salt diet, you'll be encouraged to drink lots of water to stay hydrated!!

    I have had MD for nearly 2 years.  I was plagued from day one, with frequent rotational vertigo attacks, with vomiting.  During the attacks, I usually fell (unless I was lying down when they started), and couldn't hear, or move my head. And in between attacks, I was dizzy, off balance, exhausted, and my brain was fogged. I had tinnitus from the beginning, and rapid hearing loss in the "bad ear".  

    After a year of failing all conservative measures, I opted for intratympanic steroid injections.  I have never regretted it. While it took several injections for me to obtain complete relief, it was quite a miracle.  While the injections never helped my hearing or my tinnitus, ALL other symptoms gradually left me.  

    So, if conservative measures fail, there is always something else that can be tried.

    I wish you the very best of luck!!

    Sincerely,

    J-

    • MackH
      MackH JMJ

      Posted

      Hi,

      Thanks for responding. Yes, I feel so grateful for all the positive feedback from everyone. I was at the stage where I was sick of listening to myself moan about how I was feeling so I guess my husband must have felt the same, though he's so wonderful that he never complained lol! I am so glad that I found this forum and find it fantastic. Thank you for al your feedback. Hopefully I will get postitive news soon, and if not then fingers crossed that whatever meds I am prescribed work and I can maintain as normal a life as possible. S.

  • janice58362
    janice58362 MackH

    Posted

    4 month ago I start having ringing in my ears at the 7000hz. I also had a full strang feeling in my ear with a few jabs of pain and thought I had an ear infection. NOw three years ago I had a back fusion and then both hips replaced so I put my lack of balance all that time as from my surgeries. NOw through the years I have had bouts of being clumsy and had noticed dizzy spells when bending over or turning to my right to quickly. After my hips were replaced my balance got so bad I had to use canes everywhere I go. Now four months ago my GP put me on antibiotics for an ear infection when I was missing the open door way and hitting the walls. after 4 months of loudly ringing  and a fullness feeling in my ears and an increase lack of balance I was sent to an ENT. My hearing was tested and as with Meneires disease I showed a low frequency hearing loss greater in my left ear than the right. Next week I have an MRI ordered to rule out a tumor in the inner ear which if not there will complete teh DX as menieres Disease which runs in my famil on my dads side. I have been put on a low salt diet and see my ear Dr in about two weeks to sum things out. After reading up on this disease it makes a lot of sense about things that I have lived with for years but thought were nothing but bouts of incoordination. I guess what I am saying is have you all been tested for low frequency hearing loss to confirm your Menieres disease like I have? Just wondering.
    • MackH
      MackH janice58362

      Posted

      Hi,

      Thanks for responding. Gosh you really have been through a lot. Hope all goes well with the MRI this week. I haven't been tested for anything so far, I am in my 10th week and have just had a ct scan 3 weeks ago today so am still waiting on the results. I have been referred to ENT so hopefully that appointment will come soon. At present I am just trying to find medication that helps me to lead a normal life. I wish you well. S x

  • jackie72283
    jackie72283 MackH

    Posted

    I don't know if this will help, but I had terrible vertigo for 2-3 years until I went to a physiotherapist last May - who has fixed it! I haven't had a bout since then - but the doctors say it is just coincidence.

    • MackH
      MackH jackie72283

      Posted

      Hi,

      Thanks for responding. Yes, I have heard from another lady that a physio can help. I mentioned that to my doctor and he said he didn't think it would help especially as I have tinnitus with the the vertigo. I am still waiting for scan results and an ENT appointment so hopefully something will get sorted soon. S.

  • MackH
    MackH

    Posted

    Thank you NeddyO! On Saturday I started back on Serc 16 again. I was a tad dubious about stopping one medicine for another but thought since I was off work I would give it a go. I took three tablets on Saturday and Sunday and so far things look positive. I am still very careful about the way I move and am dizzy when I ly back in bed, but the tiredness has definitely gotten a whole lot better. I could live with this! Fingers crossed things will stay this positive!
  • MackH
    MackH

    Posted

    Just a wee update.. I made a private ENT appointment as just found out that the wait time is now 20 months... too crazy! I will be going to see what he can do for me on 13th Feb... fingers crossed, S.
    • NeddyO
      NeddyO MackH

      Posted

      Good news - lets hope he advises an increase in the betahistine dose as happened to me!!
  • MackH
    MackH

    Posted

    Hi,

    So just a quick update. I went to the private ENT appointment (£185) the Dr was very good, had a peep in my ears and all was good. He took a note of all my symptoms. He did a couple of tests and made me dizzy and feel ill. He did the Epley Maneuvre (major dizziness and eyes flicking) and o was then send to audiology for a hearing test and my hearing is perfect in both ears.

    His conclusion was that I have BPPV in my right ear. He said to cut down on the betahistine from three 16mg tablets to two per day as they didn't really do anything. He said that with time the BPPV will go away by itself or I could do exercises that would help shift the crystals and help with dizziness.

    I totally forgot to ask him about the buzzing (tinnitus) in both my ears? Is this common of BPPV and if so will it go away also?

    The day after I was feeling ok til I did the exercises recommended and then I was vomiting and ill and slept for two hours. I had to take a Buccastem, the next day I was wobbly and sick and very dizzy. I had to take two more Buccastem that day.

    I am feeling ok now but it took 3 days for me to feel myself again. I am still taking three Betahistine per day and scared to cut down... Any thoughts would be greatly appreciated.

    S.

    • louise0703
      louise0703 MackH

      Posted

      I must admit when you said you were dizzy when you moved or rolled over it sounded to me like BPPV. You should be ecstatic! This is easily curable, unlike Menieres. I am so happy for you, continue the exercise xx
    • eleftherio33095
      eleftherio33095 MackH

      Posted

      It is normal to feel ill following the exercises, as your inner ear is stimulated when doing so.  After 3 days, I believe it is safe to start reducing the betaserc slowly.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiology

      Fellow of the European Academy of Neurology

    • MackH
      MackH eleftherio33095

      Posted

      Hi, thanks for your reply. I have reduced the betahistine from three 16 mg tablets per day to two. How long would you recommend staying on two per day? A month? It's the third day today of taking two per day and I have to admit I haven't been as tired and am even awake after 8pm which is amazing.

      Regarding my symptoms I haven't been as dizzy or as Ill. I have been a tad afraid to do the exercises but perhaps next week I shall try them again, maybe on the Friday night as I am off the weekend, just incase I feel very ill.

      I am so grateful for all the kindness and helpful advice in this forum.

      S.

    • MackH
      MackH louise0703

      Posted

      Hi Louise,

      Thanks for responding. Yes I initially thought it was BPPV also but my doctor wasn't convinced and so I thought that he must be right.

      S.

    • eleftherio33095
      eleftherio33095 MackH

      Posted

      Have you been asked to repeat the exercises?  Usually once or perhaps twice is enough.  The calcium carbonate crystals should be back to where they should be.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiology

      Fellow of the European Academy of Neurology

    • MackH
      MackH eleftherio33095

      Posted

      Hi,

      Yes the doctor said I could repeat the exercises. But I do feel alot better after he did it and I did it once so perhaps I shall leave for the time being. Is a month long enough to remain on two betahistine tablets per day and then cut down to one per day or what do you recommend?

      Thanks S.

    • louise0703
      louise0703 eleftherio33095

      Posted

      Hello there, I value your opinion... what treatment in your opinion will stop the vertigo the most quickly and efficiently. I don't have the luxury of not working and need to get back to a functioning employee as soon as possible. I can live with fullness/tinnitus and some hearing loss in one ear if I have to, but need to drive and can't have vertigo//vomiting with no warning.

    • MackH
      MackH louise0703

      Posted

      Hi,

      I totally know how you are feeling as I too had to take two weeks off work and was wondering what on earth I was going to do. I found that the Buccastem (the melt under the top lip tablet) works wonders for the initial sickness short term though. However the betahistine 16mg three times a day are what really helped me the most. It takes a month to kick in. It I found that I was able to drive and lead as normal a life as possible.

      I am still wary about driving at night time as oncoming car lights dazzle me and make me feel a tad disorientated, so I try and not drive then.

      I was diagnosed as having bppv in my right ear so very similar symptoms as Ménière's disease. I truly hope you feel better soon. Stress is a huge factor so as much as possible try and not get so worked up. I have cut way down on my house hold duties and my husband helps with dinners and laundry.

      I avoid all caffeine though occasionally have a choc bikkie with caffeine free tea. I don't drink alcohol or smoke which helps. I also cut away down on salt and avoid all processed foods. I take a daily horse tail 500mg supplement and drink tons of water. The best thing to do is to stay active as I find sitting and especially lying are the worst and leave me feeling wretched.

      Let me know how you are progressing. Change is difficult but it's the initial first two weeks of any health change plan that are the worst. Good luck to you I hope you are feeling better soon. S .

    • louise0703
      louise0703 MackH

      Posted

      I've had BPV in the past, and found it easy to deal with as exercises got rid of it for me, almost straight away, I didn't think betahistine worked for BPV? I'm glad you have a diagnosis which should be short term and may never come back xxx

    • MackH
      MackH louise0703

      Posted

      Yes I Have heard that it didn't work for bppv, my dr thought I had Ménière's as had all the symptoms, and I had been taking it for vertigo and tinnitus but am reducing the dose so I can eventually come off it. Yes exercises seem to be helping so that's positive. S.

    • eleftherio33095
      eleftherio33095 MackH

      Posted

      Yes, the time plan you recommend should be okay.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiology

      Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 louise0703

      Posted

      Can you remind me of your diagnosis?

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiology

      Fellow of the European Academy of Neurology

    • eleftherio33095
      eleftherio33095 louise0703

      Posted

      The most sure and direct is intratympanic steroids.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiology

      Fellow of the European Academy of Neurology

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