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Relief at last?

Posted , 9 users are following.

janice68460
janice68460

i have had MD for 5 years or more and although not as bad as when it was first diagnosed, still suffer with all the symptoms, bursting head feeling, blocked ears,tinnitus, the last couple of days have had heart pulses in the ear that Is affected, with total hearing loss, balance problems  and generally feeling so lethargic as to not to want to do anything

 I just want to sleep

my blood pressure shot up about a month ago and my GP prescribed diuretic tabs.

all MD symptoms cleared! I thought this is a breakthrough!

i felt great and back to my old self, went shopping on my own, did the garden, walked the dog and wham!

woke up one morning and all symptoms were back!

This is how unpredictable this disease Is!!

0 likes, 13 replies

13 Replies

  • jason13031973
    jason13031973 janice68460

    Posted

    hi there yes I no how you feel iv had md and tinius for nearly 5 years now I take betahistne tables for md my balance has got worse I don't go out much I stay indoors most of the time plus im a single parent too got a 12 year old girl it gets bad sometimes the md it comes on out of the blue .

    • janice68460
      janice68460 jason13031973

      Posted

      So sorry to here that. There’s always someone in a worst position.

      I am retired and although I look after my 13 year old granddaughter AND her dog I can try and cope during the day.

      i don’t think I could have kept a job going!

  • tvbonnie
    tvbonnie janice68460

    Posted

    The disease is a giant tease. Don't be fooled by the good days. It will come roaring back and mess you up each time. But the good days give me hope. False hope, yes, but I'll take what I can get.

  • lana56327
    lana56327 janice68460

    Posted

    Hi,

    I've had MD for 9 years and I recently had exactly the same symptoms, the loud sound of heart beat in the tinnitus, the balance issues, the strange feeling and the fatigue.  I've been on a diuretic for the whole 9 years, but have never had the pulsing with the tinnitus before.  My ENT wanted to see me, as the heart beat pulsing can indicate issues with the middle ear (rather than the inner ear).  He didn't find anything, but said the pulsing is related to the blood vessels that run close to the inner ear.  He also heard a heart murmur, so set me up for tests to check those blood vessels (CTA) plus get an echocardiogram of the heart.  He said the heartbeat tinnitus, called 'pulsatile tinnitus' was not usually associated with Meniere's.  Of course, the day after the appointment the heartbeat sounds went away, though the tinnitus remains.  The tiredness also remains and like you, I have days when I just want to sleep.  We'll see if the tests show anything, but I suspect heartbeat in the loud tinnitus is just a strange facet of Meniere's.  The internet says pulsatile tinnitus can be related to a number of issues, but none of the sites I looked at connected it with Meniere's.  MD has so many symptoms that I'm always afraid I'm blaming every issue on it when it could be something else.  At least these tests, if they show everything is fine, will reassure me that these new symptoms are MD.

  • NeddyO
    NeddyO janice68460

    Posted

    Try to get on to high dose betahistine, high enough to eliminate nausea and vertigo attacks. It might reduce your tinnitus but is unlikely to help with hearing loss because you have had the disease for so long - hearing damage is generally not reversible.

    The standard max dose licensed in the UK is 16mg tds which is widely regarded as little better than placebo. Once I saw the right consultant with my symptoms not fully controlled at that dose he tripled it and that worked. I was able to wean off after 6 months and had 21 months in full remission. When symptoms started to return I went straight back on the previous high dose but needed to raise it to 64mg tds. Followed same routine as before and am again in remission ( 19 months so far).

    I think you should ask for a full ENT review including MRI scan in view of your recent history.

    Good luck.

    • jcharnock
      jcharnock NeddyO

      Posted

      Hi neddyo

      Sorry to jump in on this discussion, but wanted to ask you a question. Im in the uk and Ive been told that 16mg is the highest dose they can give me. Ive got an appointment with ent in june, can they prescribe me a higher dose if they feel i need it? Or is 16mg the most i could have in the uk?

      Thanks

    • NeddyO
      NeddyO jcharnock

      Posted

      Well I am in the UK too. So if your consultant is aware of the merits of high dosage he/she should be willing to raise your dosage and and advise your GP that it is OK for repeat prescriptions. My doctors practice have had no quibble once they had the consultants letter.

      Good luck.

    • jcharnock
      jcharnock NeddyO

      Posted

      That good then, i was worried i wasnt going ro be allowed anything higher, im going ro do some research and take it with me to try and back up my case for a higher dosage.

      Thanks

  • chipp
    chipp janice68460

    Posted

    I agree totally I was going down but I had to go get another ear perfusion
    • mowmow
      mowmow chipp

      Posted

      Hi Chip, I am going to have to have another ear perfusion real soon! I had one in August of 2017! That's not the only ones, I had the surgery in 2014. It has helped me with my veritgo,but my dizziness is coming back again! So sick of it, causes me great anxiety! Thank you for your help and support!

  • chipp
    chipp janice68460

    Posted

    Glad I could help making you feel better I had the 3rd perfusion never experienced hearing loss until now I can't hear in my right ear hopefully this perfusion helps still feeling little dizzy but not spinning so I do feel just a little different not going to say better good luck my friend I'm having a rough time around it's getting worse for me I'm now 51 I was diagnosed at 42

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