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meniere's disease and fibromyalgia?

Posted , 11 users are following.

angel75
angel75

For the last few years i have been suffering from balance issues,ringing in my ears its there at a low level all the time but i get bouts of it where it gets so loud i cant hear myself think! the last year i've been suffering with painfull popping type pressure in the ear like being in a airoplane when its taking off ( if that makes sense) and hearing lost in the right ear. most recent have been close bouts of vertigo and sickness which i am taking medication for which helping, this leaves me tired afterwards.

My Dr says she thinks its meniere's disease and i have my 2 nd appointment with my E.N.T in Feb and a ENG (balance test) in march. I missed my last appoitments with the ENT as i have fibromyalgia and get bad flares and am registered disabled.

I cant believe i may have something else to cope with. Does anybody else have the both?

Also is it true you have to give up drivibg i've only just got a disabilty car thats been adapted i dont want to give up driving again?

angel sad

1 like, 12 replies

12 Replies

  • littlelooby
    littlelooby

    Posted

    [/color]You could be writing about me - except that I don't have fibromyalgia. All the other symptoms you are describing are like my own. I was diagnosed in October last year, after suffering 19 attacks of severe vertigo with nausea, hearing loss, and buzzing, ear pressure etc. within 2 months. Stemitil helps the nausea.

    There is a very good forum on menieres.org. Take a glance at it, it is very useful with lots of tips.

    Suspension of your driving licence depends very much on whether or not you get any warning of attacks. I am still waiting to hear from the DSA on mine - although I have not driven since September - too scared to risk it.

    When you see the ENT, ask about increasing medication. I take betahistine and a diuretic which has lessoned my symptoms - although I do still get ear pressure, buzzing, and sensitivy to high/low pitch noises.

    Good Luck[color=blue] :roll:

  • DizzyDora
    DizzyDora

    Posted

    Hi Angel,

    Yes I have MD and Fibro, also I have Chiari Malformation, Syringomyalia, Asthma, Diabetes, and Atrial Fibrillation of my heart.....Oh and lastly high blood pressure!!

    I've had Meniere's for a number of years but my latest attack has been the worst yet, it's lasted for nearly 6 weeks. I've been having up to 3 sometimes 4 attacks a day every day, sometimes they've been so severe I've felt like ending it all. At the minute I'm waiting on an appointment to come through to get me in to have Gentamicin treatments on my ear as so far none of the other treatments have worked.

    My heart goes out to you, this MD is so crippling, with all the other conditions I have going on MD is by far the worst, when the spins come on as you know it's terrifying.

    Take care, Marina x

    • theresa54719
      theresa54719 DizzyDora

      Posted

      yes im with you on all of that im 5/6yrs into having meniere's now. it distroyed my life with deep deep depression and lost friends and isolation is unreal.
  • DizzyDora
    DizzyDora

    Posted

    Hi Angel,

    Yes I have MD and Fibro, also I have Chiari Malformation, Syringomyalia, Asthma, Diabetes, and Atrial Fibrillation of my heart.....Oh and lastly high blood pressure!!

    I've had Meniere's for a number of years but my latest attack has been the worst yet, it's lasted for nearly 6 weeks. I've been having up to 3 sometimes 4 attacks a day every day, sometimes they've been so severe I've felt like ending it all. At the minute I'm waiting on an appointment to come through to get me in to have Gentamicin treatments on my ear as so far none of the other treatments have worked.

    My heart goes out to you, this MD is so crippling, with all the other conditions I have going on MD is by far the worst, when the spins come on as you know it's terrifying.

    Take care, Dizzy x

  • spik
    spik

    Posted

    Hi Angel

    I have Fibro, Asthma, IBS and now it looks as though Meniere is another thing to cope with. I have just been put on Betahistine dihydrochloride to try and help with dizzy spells. Have got to arrange a hearing test then they will refer me back to Dr who will then refer me to ENT, honestly why do we have to keep going backwards and forwards to get to the right department, sooooo frustrating. Anyway, totally understand what you are going through. Stay strong

    Hugs Ali xxxx

  • dobie2
    dobie2

    Posted

    hi there, i know who you feel. iam going back and forth to the ENT clinic. i have all the symptoms on of Meniers but the doctor not sure as some of my symptoms dont match. i have the feeling that my ear is block just as someone said as though on airplane. he wants me to make emergancy hearing test when the pressure increases, the dizziness is horrid and i am on medication for this which sort of help with the feeling of sickness. i also have trouble with balance i am always walking into things in the home which causes bruising, i bruise easilily as the slightest knock marks me this really upset Christmas for me as from boxing day i could hardly stand due to the dizziness and the feeling of sickness..

    i am also being investigated as they think i may also have Fibro which causes me terriable pain and discomfort, just wish people in charge of medicals (ATOS) would understand what both of these canditions do to you. they say you are fit for work but you know that you body cant cope so they expect you to seek employment, who in their right mind would employ someone like me when i have so many probles throughout the day.

    janet

  • helen56152
    helen56152 angel75

    Posted

    Hi Angel, I'm in the same boat, I think. I got a diagnosis of Menieres before the fibromyalgia. I am an audiologist, so I knew what signs to look out for and the symptoms I was having were classic Menieres: fullness sensation in the ear, fluctuating low-frequency hearing loss, distortion of sound, vertigo and tinnitus with nausea. However,I can't help but think that it could just be another aspect of the fibromyalgia. 

    I have to say that the prognosis for FBM seems to be much more positive than Menieres, so perhaps I just WANT to blame the FBM!

    One thing I would like to know, though. Is there anyone else here who has had their diagnosis while there a re menopausal? I'm convinced that the hormonal disturbance that has come with the onset of the change has been a trigger for the other systems. Anyone else noticed anything similar?

    • marci1987
      marci1987 helen56152

      Posted

      Hi, I was diagnosed with Meniers 8 years ago. One major attack left me deaf in one ear and vertigo for days and days. Had to be hospitalized for almost a week. It took 6 months of being off balanced to get to being o.k. through the past 8 years i noticed more imbalance then vertigo. These would last for months. About 4 years ago i developed severe pain in mostly my legs and hips. Burning sensation all over my body.

      This summer my balance issues were very bad. This time different then before..major headache, blurred vision,facial pain and loss of cognitive ability. Could not work in this condition. Seen the ENT again..he said more serc.

      I was not satisfied with this so i was able to see an ENT in the city. He told me i have a vestibular disorder??? Not Meniers??so confused as to what to think. My hearing is moderate to severe in my ear from the big vertigo attack. Some came back but it remained the same for the last 8 years. My other ear is now showing signs of bilateral hearing loss at the low to mid tones. I have been given Vestibular rehabilitation excercises to try to retrain my brain. I also believe that i have hit the peri menopause as i have night and day hotflashes iam 46 years old. Soecialist told me to go off of my betahistine as it won't help. Going for more test next month where they will do an ENG to see the severity. Left ear is believed to have no vestibular functioning. Romberg's test was positive.

      Very frustrating as i went through alot of years of being treated for something i may not have had. Or maybe it is neniers? Maybe bc of the damage it landed me with a vestibular disorder?

      Around the time when i had the worst vertigo attack,four months prior i was struck in the back of the head near the back of my ear .it was very bruised. Specialist thinks the injury could have caused more severe symptoms and hearing issues. Mri's were notmal

    • Treza
      Treza helen56152

      Posted

      i have suffered from menieres for over 20 years i also now have fibromyalgia and now going through menopause . although my mineres has not played up much over year as i take medication at the minute my head and ear is driving me crazy . im not sure which one of these it is just no i am worn out with it . am waiting on MRI to check nothing else going on . so i can totally sympathise with you

  • theresa54719
    theresa54719 angel75

    Posted

    HI angel i have menieres for last 5 yrs and i didnt have give up driving,you just dont drive when your meniere is playing up,that been said i think now that i may have fibromyalia have another few vists to the doc so may wait and see. I think its an autoimmune disease. Can you tell me what your symptoms are for fibromyalgia.
  • diane90622
    diane90622 angel75

    Posted

    Hi angel, I have both fibromyalgia and menieres. Had the f first about 6 month's. The menieres about 2 months. I experience the popping got really bad tinnitus at the moment and feeling nauseous, I tried bethahistamin doesn't help. Also anti sickness meds arnt working. I empathise with you. Not sure about the driving don't drive myself.
  • marie31105
    marie31105 angel75

    Posted

    Hi Angel75 ive just been told ive got menieres and vestibular migraines the last time i saw my rheumy he said fibromyalgia because of covid my last appointments were phone and it changed to widespread musckoskeletal pain syndrome ive actually got a face to face with him next month at one point it was thought i had Lupus too but ana testing came back negative but i have had a lupus skin rash diagnosed by a biopsy a while ago i was told by pain clinic they couldnt help with my pain as ive exhausted all the meds to help the pain im hoping once your trialled on meds that they work for you i was told by my GP i could drive as long as i didnt have vertigo but anything ive read about menieres say you shouldnt drive? Hope things get better for you soon Marie x

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