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newly suspected meniere's

Discussion in 'Your Living Room' started by sivy28, Oct 27, 2020.

  1. sivy28

    sivy28 New Member

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    Hi all, In a way I’m sorry for the need to join this forum but I am extremely grateful it’s here ! Just a little background, firstly I am 55 years old, and 3 years ago woke up one morning 3am couldn't make it to the bathroom balance and giddiness , cold sweats , my wife suspected heart problem ended up in the emergency room but heart was fine. It took around 3-4 hours for giddiness to subside. Dr suspected it may have been an ear infection despite no pain etc? I noticed an increase in the left ear of tinnitus which I had noticed now and again throughout my life but was now there all the time. Ent consultant sent me for mri came back clear, so was left with ear ringing and discharged.

    Along with this I had noticed a small change to my balance and the odd sudden feeling of spinning briefly but just put it down to getting older and tolerated it as I had not attributed it to the earlier event.

    Recently july 2020 while at work (NHS) I had the feeling of spinning again , trouble walking etc but this time it got much worse , it was as if the spinning got out of control, I ended up on the floor, vomiting uncontrollably , extreme noise intolerance , and even my vision was affected , hard to tolerate bright light , I ended up in the emergency room on a drip and things settled somewhat after iv stemetil . The attack lasted 5 hours . after this I suffered extreme fatigue. Since this attack the daily symptoms got worse , I noticed more balance issues and more frequent dizzy spells and then 5 weeks later again at work another big attack.

    I have now seen another ent consultant and after more tests MRI clear , hearing test = loss of hearing in affected ear , tinnitus much worse daily balance issues . The consultant suggested either menieres or labryinthitis ? he had started me on betahistine 16mg three times daily and to undergo vestibular rehabilitation therapy.

    Ok at the moment im struggling with these symptoms as I can see most of the forum members are . I am sure lots of members like me would be concerned of other causes eg neurological or vascular. The thing that worries me most are the other symptoms aside of the common listed ones eg tinnitus ,fullness, vertigo, . I just do not feel right , ive noticed more fatigue especially if using computer screens or reading a lot in fact I seem to be a lot more sensitive to visual stimulus which can bring on headaches and increase giddiness. I do understand some of this may be due to increased anxiety due to the unpredictable nature of the disease but it feels more of a neurological problem, I even have times where my thinking and focus is reduced and I have struggled with a bit of delay in getting words out. When walking , again my eyes are affected as if the pavements moving up and down ?

    Are any of these feelings common with menieres or should I be going doen another route?

    Ive been on serc (betahistine ) for 2 weeks now and im not sure if they are doing any good, or even if they are maybe causing some of the symptoms. But I plan to stick it out as I have not had another big attack yet and do not know if this is down to serc or just the nature of the disease. I am experimenting with rescue meds and carry buccastem and diazepam to see if that helps stop a big attack.

    I am planning to follow other members suggestions in time once ive given serc a good run , So I am extremely grateful for this knowledge base. I am just starting this horrible journey and hope to bring back some normality to life
    regards
    Sivy28
     
  2. Joeyv1234

    Joeyv1234 New Member

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    Jun 27, 2020
    First time poster on here but think that some of your symptoms sound like vestibular migraines. Is your hearing loss in the lower or higher frequencies?
     
  3. sivy28

    sivy28 New Member

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    Hi Joey that's interesting, I think I've read there's some crossover with these symptoms, just seeking to see if others experienced the same or just had classic symptoms. My hearing loss is in the lower frequency thanks sivy28
     
  4. Donamo

    Donamo Active Member

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    Well, I have had most of the same things you have spoke about. Fatigue and "brain fog". Serc didn't help me nor did low salt diet. But an altered diet very low in arginine and anti-virals have allowed me to continue with an almost normal life. I posted a list of do not eat foods here in one of my posts.

    My advice is to forget the doctors, do your own research and trial and error to fix yourself. I lot of people find relief, but it does take patience and the doctors are not really going to help.
     
  5. sivy28

    sivy28 New Member

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    Oct 27, 2020
    Thanks donamo, I agree with you about trying to find what works for me, I'm going to experiment once I've given the serc a proper go but I do prefer more natural methods.
    I plan to keep a diary and slowly work through what others have had success with.
    I still struggle to accept this though and wonder if something else is causing these symptoms but I guess I have to go with it. I get the impression so far docs don't want to know

    Sivy28
     
  6. Pa Cowboy

    Pa Cowboy Member

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    Brain Fog is a something I had trouble with and fatigue was brutal. All part of this disease. Had trouble getting words out, concentration problems, losing track of what I was talking about. And sleep, that was my middle name for about 2 years.
     
  7. sivy28

    sivy28 New Member

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    Oct 27, 2020
    Hi pacowboy feel bad for you but I am glad to hear I'm not alone with those kind of symptoms, it does make you question your sanity, how are you now did you manage to overcome them if so how , I'm trying to lead a normal Life as possible , work excersise etc but it is challenging at the moment
    Sivy28
     
  8. IvanA

    IvanA Active Member

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    Strong headaches, a lot of tiredness and discomfort when looking at screens around here too. For about 3 months after the vertigo attack.

    In my case, the inconvenience when looking at screens, there were times when they bothered me and others when they didn't. A friend also told me a vestibular migraine, but my ENT specialists ruled it out because except for post-vertigo headaches I have never had headaches in 33 years (except for those with a cold or flu).

    Patience, the normal thing is a first few years with strong and very annoying attacks, to later subside and not have vertigo again, at most some dizziness (tinnitus and hearing loss are forever). If there is no remission of the attacks and they continue to increase, your ENT will recommend surgery, but for now, take betahistine for several months and try safer things.

    Read this forum and you will see that we also have some scientific news that invites moderate optimism with two promising phase 3 drugs: OTOVIDEX and SP-1005.
     
  9. Joney

    Joney Active Member

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    You don’t always have to experience a headache with vestibular migraines. If you haven’t read “the dizzy cook”’s story, I think you should.

    My Vestibular Migraine Story
     
    • Informative Informative x 1
  10. sivy28

    sivy28 New Member

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    Thanks for the replies, I never suffer headache's normally but after the 2 big vertigo attacks I get tension type headache's from what's going on with my eyes or day to day dizziness, I've read the vestibular rehabilitation can help with that , must try hopefully this serc holds off the large attacks, I'll try this first then the other natural regimes off this forum
    Sivy28
     
  11. Pa Cowboy

    Pa Cowboy Member

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    Changed my diet, quit alcohol and caffeine, added vitamins and supplements, but taking antivirals put the finishing touches on my recovery. Might just be a remission but I'm back to normal.
     
  12. sivy28

    sivy28 New Member

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    Thanks bud, I think at some point if needed I'll try the antivirals I think though it will be difficult here in the UK
    Sivy28
     
  13. Mindosa

    Mindosa Member

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  14. Joeyv1234

    Joeyv1234 New Member

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    Hi Jonbubo
    I've bought some Lysine - should I take this with the Olive leaf as well? Would you mind posting how much of each is advisable to take? I think I will have to take this approach as I live in the UK and searching this site it would seem I will have little chance of being prescribed AVs. I believe that the Herpes virus may be a cause as years ago a blood test showed that I had the virus in my system after 2 bouts of Shingles and cold sores since I was young.
     
  15. Joeyv1234

    Joeyv1234 New Member

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  16. Joeyv1234

    Joeyv1234 New Member

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    Jun 27, 2020
    Sorry messed that up - I meant to post Sivy28 that I have similar symptoms to yourself but lower and higher frequency hearing loss. Despite seeing many ENT 'specialists' I have yet to pin down a definite diagnosis so have joined this forum where it seems that the people on here know more than the 'experts' - so I am grateful to have found this forum :)
     
  17. Joeyv1234

    Joeyv1234 New Member

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    Jun 27, 2020
    Thanks ever so much - it's worth a go isn't it :)
     
  18. sivy28

    sivy28 New Member

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    Oct 27, 2020
    thanks for the replies sorry for the delay had some password issues,

    Joeyv im in the same boat as you , seems the ent consultants dont really want to know. I think ive been discharged again to basically get on with it ?
    im going to give it a few months on serc then try the natural method , or shpould i be using the supplements alongside the serc? I was thinking of eliminating to find out what works

    sivy28
     
  19. Joeyv1234

    Joeyv1234 New Member

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    I've been diagnosed, since 2014,with BPPV, possible Menieres, possible acoustic neuroma, acoustic neuroma AND menieres (possibly) and possible MAV. The appointment I paid for via Zoom with an 'expert' (I paid privately due to pandemic as I can't get an appointment at ENT dept.) was the absolute worst! He wouldn't let me describe my symptoms and I paid an extortionate amount for half an hour but only got 15 minutes - 10 actually by the time he asked what I did as a job etc. The best person I saw was an audiologist for free. I've only ever been offered anti-depressants as the doctors believe it is all due to stress and anxiety. Lasted 12 days on these tablets as they made me feel so ill - more than I think I should have felt. I actually didn't have any anxiety until I paid for the Zoom appointment, which seemed to send me into a downward spin. Got myself out of the depths by guided meditation and Kalms. I'm waiting for the natural AVs to be delivered but I see you can buy the actual thing on line. Sorry this has ended up a bit long :)
     
  20. sivy28

    sivy28 New Member

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    hi joey sorry to here your struggles it does suck with finding good professional help but dont give up. I would say the anxiety is making things worse and is not the cause of the problem so improving that should help symptoms. Im seeking possible privately paid help if i can find anybody in the uk. Ive looked at the upper neck chiros but to be honest from my experience which is alot over the years with back and neck issues im not convinced with chiropractic practice , ive seen 7 so far and all seemed the same and quite dubious when you look into it.
    Where can you get AVs online?
     

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