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Constant dizziness for a year. Battling for 6.

Posted , 8 users are following.

tamara89
tamara89

I am desperate for help. I have been battling with off and on dizziness for 6 years. This time, its been constant, daily for one year. I saw an ENT back a few years ago and was sent home with no answers.

This time I have gone to different drs and still no diagnosis. A Dr from urgent care advised me to see a neurologist and thinks Minieres disease but my Dr says it's not and won't offer a referral.

He has done several blood panel tests and all have come back normal. He looked into my ears and says they're clear.

This is ruining my life. He only says it's anxiety. I wake up and within minutes I am dizzy. It remains until I go to bed. I performed the Epley Maneuver and I wasn't dizzy for 3 days. I need help, advice, answers, something..

1 like, 18 replies

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  • coral_89788
    coral_89788 tamara89

    Posted

    Hi Tamara

    If I were you I would demand a referral or change gp's...., I had the same problem so the next time I fell I went to emergency and they gave me the referral...I feel for you because this is serious stuff you can really hurt yourself if you fall and hit your head..., be strong and demanding that you need to see a neurologist....good luck ..Coral ....who knows it could be something like MS ?????

  • Waffalobill
    Waffalobill tamara89

    Posted

    Neurologist may not help. Need to see a neurotologist. Neurologist usually only deal with brain disorders. Neurotologist deals with brain connections from your middle ear and vestibular system.
    • coral_89788
      coral_89788 Waffalobill

      Posted

      Hi Waffalobill ,

      Good advice, I really didn't know the difference..., I'm going to look into that ...

      Thanks, Coral

    • Waffalobill
      Waffalobill coral_89788

      Posted

      Depending on where you live some neurologist have neurotologists in there office. Some of the bigger ENT offices, such as university practices, have them in there offices. Because it's such a specialty alot of places don't have them. I had to drive over a hour and a half to get to one. I go to a state university practice. Closest one to me.

    • coral_89788
      coral_89788 Waffalobill

      Posted

      Good ideal...., I will call UCLA , there only 30 minutes away and I'm going to check the veterans hospital, that's a teaching hospital.... I'll let ya know what I find out, thanks. !!!!!!

  • dizzyear
    dizzyear tamara89

    Posted

    Hi Tamara,

    What type of dizziness do you have. Room spinning type of dizzy, imbalance dizzy, lightheaded dizzy? Is it constant or do you have dizzy episodes. Sorry you are having symptoms. It can be tough.

    • tamara89
      tamara89 dizzyear

      Posted

      Hi there thanks for the response. The dizziness is daily. Sometimes it's not as bad some days it's really bad. Most of the time it feels like I'm on a boat. I can be sitting on my bed and the faintest movement feels like I'm swaying on a boat in the ocean. yesterday it felt like unbalanced dizziness. I was at work trying to carry buckets of ice and felt like i was going to fall over. There are times it doesn't seem present but that is few and far between.

  • anthony57342
    anthony57342 tamara89

    Posted

    I know the feeling. For two whole years I've been complaining of dizziness, lack of co-ordination and nausea and always been told it was anxiety. Then two weeks I fell into the road, got scared, booked an appt. and demanded I was taken seriously. Doc spent three minutes checking my eyes, balance and muscles, declared I have ataxia and nystagmus and referred me to a neurologist. I'm so used to being told it's anxiety and to snap out of it that I had to ask when leaving, so I'm definitely not making this up then?

    I've got three months to wait for the neurologist, but there's some kind of perverse pleasure in knowing there's actually something wrong with me!

    • lily65668
      lily65668 anthony57342

      Posted

      Anthony, may I ask how old you are? I'm a former neuro nurse - albeit from many years ago - and it seems to me that three months is quite a long time to wait for someone with your worsening symptoms, especially if you're not elderly.

      I'm not suggesting that you have some life-threatening disease. It may "only" be Ménière's syndrome. (I put in the inverted commas for reasons Ménière's sufferers will well understand.) There could be many other explanations for your symptoms, and only a neurologist, possibly reinforced by a neurotologist, can diagnose you.

      If you have another attack of falling over, it might be a good idea to take yourself to A&E - at a major hospital rather than a walk-in centre. (I'm assuming from the waiting time that you're in the UK, but please read ER if you're stateside.) They might be able to expedite your appointment.

    • Waffalobill
      Waffalobill lily65668

      Posted

      Neurologist wait for me was 3 months. Same with neurotologist. Same with a ENT but my GP got me into one sooner. Was same with a urologist. 3 month wait. I am in the U.S. my VNG testing would have been longer than that but when the doc called they had just had a cancellation. I took the app. Even a app for a audiogram took 2 months.
    • anthony57342
      anthony57342 lily65668

      Posted

      I was warned there was a long waiting list! I don't know why the doctor has decided there's no urgency. One reason might be I have a history of heavy drinking, but I can't imagine it being so bad I've caused neurological damage, surely I would have been on the radar for something else before I started falling over while sober?

    • lily65668
      lily65668 anthony57342

      Posted

      I think it depends on how heavily you were drinking and how much it affected your general health. Very heavy drinking can affect absorption of vitamin B1 (thiamine) which can indeed cause neurological damage. Also, if the person is drinking so heavily that it comes at the expense of eating, or the lining of the upper digestive tract is seriously damaged, vitamin B12 deficiency can occur, and this can also cause brain damage.

      Perhaps my assessment of three months being too long to wait was subjective, and based on my own experience. Although I worked in the NHS for 10 years as a young woman, and had to deal with it during the final illnesses of both parents, I've lived in Belgium for the past 42 years. Under our very different health system - which costs the user slightly more than the UK but nowhere near as much as the US - it would be unthinkable to wait more than a few weeks for an appointment in your circumstances.

    • Waffalobill
      Waffalobill anthony57342

      Posted

      I never had a drug or drinking problem. I also get random drug and alcohol testing. State law if your taking a controlled substance. I still had to wait. The specialists are booked solid. Between the amount of patients, holidays, and vacations seems I am always waiting. I had to have a upper endoscopy. Gastro app alone was a 3 month wait. The nurse found a opening 1 month after gastro app. I had to take it. Next opening was end if october,.
    • tamara89
      tamara89 anthony57342

      Posted

      I would seriously hate to know that something in fact is wrong with me because it is an anxiety trigger, but I am tired of being told it's all in my head and it's anxiety. I can usually tell the difference. But daily dizziness doesn't make feel like it's just nothing. I'm glad you finally got answers. I'm gonna have to start demanding some.

  • rocksolid
    rocksolid tamara89

    Posted

    You said you did the  Epley Maneuver and felt better. It may just be the cyrstals in your ear giving you the problem. I would try it again. You also may want to consider your neck could be the issue. I went to a ENT and they did a VEMP test on me and my right side did not do well. She thinks it the muscles in my neck being tight that is giving me the balance problem. Look up SCM muscle issues on google. I have been going to a osteopathic doctor and I think it is helping me.
    • tamara89
      tamara89 rocksolid

      Posted

      I will try again! I have also been trying to take into action anything else I can think that would eliminate stuff. Like eye exam, etc. I am just tired of it ruining my life.
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