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  • Unsteady for over 5 years

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    Old 09-01-2014, 02:48 AM   #1
    LondonA
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    Unsteady for over 5 years

    Hi guys,

    My first post here..
    I've read through a load of posts here and sometimes I read a post which has exactly the same symptoms I have and I cant wait to get to the bottom to find out what the cure was..............except it's never there..

    For over 5 years now I have been unsteady most days, had MRI's, CAT's, numerous ENT's who don't know and say its a mystery..., anxiety depression meds, therapy, Epley maneuvers you name it.. Booked in with Neuro otologist next.

    Trying to keep it brief, I've not been able to pin point the cause but these are some of my symptoms in varying degrees.

    1. Feeling like I'm on a soft mattress when standing, after moving it is worse when I stand still or rest against something or in a queue,
    2. Feel like I am swaying but in reality I'm not.
    3. Feel super sensitive to slight changes in floor level, big ones aren't a problem. Its like my eyes/brain cant see the change in level but my balance/ears feel it which screws me up.
    4. When I'm moving I normally feel better, I can ride a bike etc no problems, do balance tests with my eyes closed for a bit at my ENT's ok too..always ok when I'm with him??
    Anyone feel this... there are lots of posts like this... somebody must have been 'cured' on here.. Would love to hear you thoughts..

     
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    Old 09-02-2014, 07:36 AM   #2
    biteneck
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    Re: Unsteady for over 5 years

    Hello,
    Has anyone mentioned MAV to you? It's called migraine associated vertigo and I have been told that you do not have to have the headache pain with it. There are migraine preventatives that have helped people.
    Do you ever feel like you're in a dream too?
    Did you have and ENG with caloric testing done to check for any vestibular loss?
    Please keep us informed.
    Thanks
    Nicole

     
    Old 09-03-2014, 09:44 AM   #3
    LondonA
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    Re: Unsteady for over 5 years

    Hi Nicole,

    Thanks for replying,
    I've heard of MAV before and looked at the symptoms associated with it but it didn't add up, I will have another look though as you've mentioned it.
    I have had ENG and caloric testing and some Nystagmus was shown, sometimes more, sometimes less so they suspect BBPV, my latest ENT has seen little Nystagmus and said I have not got BBPV. My caloric testing wasn't done during the ENG, but tested negative.
    Today I was meeting a friend and 10 mins after seeing him I felt the unsteadiness kick in, feeling nauseous and the floor was not steady under my feet. feeling like I was going to vomit.
    Thanks
    Andy

    Last edited by LondonA; 09-03-2014 at 09:45 AM.

     
    Old 09-03-2014, 01:46 PM   #4
    biteneck
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    Re: Unsteady for over 5 years

    Hi Andy,
    How did they confirm a negative test for caloric if they didn't do it? Was there another way to confirm damage?
    Thanks,
    Nicole

     
    Old 09-03-2014, 02:20 PM   #5
    LondonA
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    Re: Unsteady for over 5 years

    Hi Nicole,

    All they did was had a machine that blew 'calibrated' air into my ear.
    That's all I know they did and they said it was ok?
    The next specialist I am going to wants to do a rotating chair? sounds fun!
    Thanks
    Nicole

     
    Old 09-03-2014, 05:28 PM   #6
    biteneck
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    Re: Unsteady for over 5 years

    Hello Andy,
    Did you get dizzy or vertigo with the air in the ear? I did and felt like throwing up but thankfully didn't. That was back into May 2012. I have an appt. this Friday with my neuro-otologist to have the rotary chair test and a VEMP test. I had the rotary chair test done in June 2012. It did make me feel slightly dizzy when I went to get out of it but felt better a few minutes later. For some reason, I feel really worried about the test this time but I'm trying to talk myself down. It feels like the medicine I was prescribed is making me less tolerable to this stuff instead of making it better. I am praying that it goes quickly and I can tolerate it again.
    Do you know if you have any vestibular loss?
    Nicole

     
    Old 09-04-2014, 02:34 AM   #7
    LondonA
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    Re: Unsteady for over 5 years

    HI Nicole,

    I had the Caloric about 3 years ago now and I remember it did make me feel unsteady/dizzy but the doctors weren't overly concerned about it. What did your docs say when you felt unsteady?
    My Neuro Otologist appointment isn't until 27th Oct. Hoping for some more answers when I go to see him, he's meant to be really good.
    I'm not sure if I have any vestibular loss? I have the graphs with me but not sure what they mean.
    When you felt dizzy the first time on the chair, what did it tell them?
    Maybe think of you appointment tomorrow as another step forward in getting rid of it.. what meds are you on for your unsteadiness?
    What's your story Nicole? how long/symptoms
    Good luck for tomorrow. Let me know how it goes.
    Andy

     
    Old 09-04-2014, 12:54 PM   #8
    sashababe
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    Re: Unsteady for over 5 years

    I've had vertigo for many, many years. My doctor thought inner ear problems or migraines were probably to blame but I've never been given a definite reason or solution. A lot of the time is was a nuisance but livable with but sometimes it would be so bad I'd find it hard to walk down the street. About 6 months ago I heard about Oil Pulling and as it was cheap to do without side effects I thought I'd give it a try. I tried it just for the all round health benefits particularly oral health. I found it difficult to do at first but persevered and now it's part of my daily routine and I wouldn't be without it. Yes it makes my mouth feel clean with never a bad taste. It heightens the taste buds making food more enjoyable. I didn't have any hay fever this summer despite very high pollen counts. The biggest change though is the vertigo has gone. Not just improved but completely gone. It might be a co-incidence but it's not physiological as I wasn't expecting the oil pulling to have any effect on the vertigo. Might be worth a try?

     
    Old 09-04-2014, 01:25 PM   #9
    LondonA
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    Re: Unsteady for over 5 years

    Hi Sashababe,

    Thanks for the heads up, I will google it and look into it. Fresh breath and no unsteadiness! How does it get better than that
    Andy

     
    Old 09-04-2014, 01:47 PM   #10
    sashababe
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    Re: Unsteady for over 5 years

    I just use regular sunflower oil. A small mouthful like you'd take if you were using a mouth wash. Try and keep in your mouth for 20 minutes. Sounds a long time but I do it as soon as I get up and just go about my morning routine with it in there. The first couple of weeks I'd have to spit a little bit out every 5 minutes or so but you quickly get used to it. Then just spit it out and swill round your mouth with water. Supposed to whiten your teeth as well.

     
    Old 09-04-2014, 03:47 PM   #11
    sashababe
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    Re: Unsteady for over 5 years

    Sunflower oil was the first I tried and I got on with it so haven't tried any others. A lot of people use coconut oil as this has anti bacterial properties but can cause allergic reactions if you're sensitive to it. Our local supermarkets in England all sell Sunflower oil but any vegetable oil should work. I didn't expect it to work for the vertigo but I guess it does by improving overall health. My inner ear/vision/balance seems particularly finely tuned and it doesn't take much to knock me off my perch! I even had an ear injury recently that resulted in a perforated ear drum and even that didn't adversely effect my balance.

     
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