8 Months of Undiagnosed Dizziness

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Reaching out in a last ditch effort to anyone who is/has gone through this, as no doctor has been able to figure it out.

I’ve had ongoing “dizziness” for 8 months. It’s constant. Not such that I’m falling over or unable to function, but enough to know that something is wrong as I live day to day, like a “swimmy” sensation or being a bobble-head. It’s worse when i move my head, position, or eyes, or come to a stop when driving. Sometimes my surroundings seem like they’re “crawling” and certain visuals bother me; rocking motions, action movie scenes, scrolling through my phone. The only time i get relief is if I’m laying down completely still or sleeping. Some days are better than others. Its miserable. It started 3 months after a miscarriage & worsened during my second pregnancy, which i unfortunately lost as well. It did ease up for a couple weeks after the second loss, but has come back.

I have:

Tried allergy meds, meclizine, the vertigo maneuvers, tons of bloodwork (checking iron, b12, sugar, etc.) had an MRI & CAT scan (normal), seen two ENTs that ruled out anything to do with inner ear or vertigo & had a hearing test, seen a neuro multiple times that ruled out anything and tried migraine meds (topomax for a month), gone to PT for vestibular rehab for 2 months, had my eyes examined, began anxiety meds due to this causing my panic attacks to return, had an EKG and wore a heart monitor for a day, had my hormones & thyroid tested, had autoimmune bloodwork testing after the second miscarriage (negative).

And finally...saw a balance and dizziness specialist who did eye movement tests, warm and cool liquids in my ear and a test where they moved the wall and floor. His final conclusion was that my “symptoms are too vague and not severe enough to find a cause nor will any other specialist be able to, being that there is nothing showing up on the tests ...hopefully it will just go away w/ anxiety meds (which I’m already on) or after i deliver (which I’ve since lost, and this started well before the pregnancy) 😑😒

I really don’t want to live life feeling like this. It’s not stress or anxiety, I’m otherwise fine and coping with the losses & staying hopeful, it’s CAUSING my anxiety and completely interrupting my life. 

Any advice is appreciated ??

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  • Posted

    Hi considering what you have been through.....so sorry to hear about your miscarriages........could it be anxiety that is causing the dizziness?   Just be careful with medications they may want to give you. 😕

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    • Posted

      Thank you. <3 I really doubt it at this point, it’s what causes my anxiety though and I’m taking a low dose of lexapro (which helped the anxiety but not the dizzy symptoms) I’m otherwise handling everything pretty well. 

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  • Posted

    I would suggest a neurotologist. Not a neurologist. These guys specialize in signals to the brain from your vestibular system. Sometimes the early stages of menieres show up like this which makes it very hard to diagnose. It starts out mild and grows.
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  • Posted

    Ok then you may need to see a neuro ent and a neurologist.   I would make appts now because I know for me it was like a 2 month wait to get an appt.....you can always cancel but at least you have it.  Sorry I thought you said you were only taking meclinze.  
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  • Posted

    You may want to consider your neck. It could be a cervical issue or your muscles in your neck, like your SCM. Look up SCM issues and trigger points. and you will see what I mean. A chiropractor would do an X ray of your neck to see if there are any issues with pinch nerve.
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  • Posted

    Hey Christina . Hope you are okay. I’m only 16 and I have this problem for 4 months , been to several doctors , had every kind of scan and so on , they didn’t find anything. Had blood tests , also fine . I do have a high blood pressure , mostly around 145/85 , and no blood pressure tablets helped me yet..  Right now I reduced my daily routine , I quit part time job, I’m doing only college partly , because that feeling is awful, I feel so spaced out ... hope you will find what’s causing it !
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  • Posted

    Hi..first of all am vry sorry abt ur miscarriages..as i was reading ur post i saw so many thgs in common tht i did too..abt tryng fr a treatmt i mean..actually iv had vertigo dizziness nausea n vomiting fr a bit mre than 3 YEARS now! Iv tried so many thgs n been to sooo many docs! Am bter than bfre nw but symptoms not disappeared yet.i just pray to b ok soon coz its a horrible feeling indeed! Bliev me i knw wat ur gng thru! If one doesnt go thru it one wudnt really undstd..it has made me so miserable too n iv got to drive n go to wrk n look aftr my nearly 4yr old kid..actually all my symptoms started wth a specific stretchg movemt i had made wth my arm to place z mosquito net of my baby properly n since then symptoms started immediately! Do u rembr if ever u did a specific mvmt tht cud hv triggered this? A few thgs tht helped me ( coz so many others didnt) :

    1. Neck n back exercises wth a kinesiologist (like a physiotherapist)

    2. Epley manoeuvre frm an ENT surgeon ( but uv alrdy saw an ENT )

    3. Treatmt wth an osteopath ( crack neck etc)

    Hpefully u can find relief soon..tk cr

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    • Posted

      Thank you. Ugh 3 years?! I did do physical therapy but no neck cracking. Nothing in particular triggered it in the beginning. It’s just so odd that so many of us have these symptoms w/ no rhyme or reason
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    • Posted

      A little bit mre than 3 years actually coz it all started in dec 2014! Pfff..i was only 32 at the time! I just hpe i find a remedy to completely make all z symptoms disappear forever n i wish z same to u..tkc
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  • Posted

    Hi Christina, this is me exactly for 7 months in varying degrees. Would like to correspond if possible. Had CT scans, meds, seen specialists who are telling me anxiety too and it's getting me nuts. If you care to write I'm at my wit's end! Thanks so much. Gayle

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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    • Posted

      Very sorry to hear you’re suffering too. I did try vestibular therapy, not much help. I’ve had some days of improvement over the last couple months. I’m currently trying a keto diet, to see if it has any effect, since I’ve heard it’s helped people with a range of different ailments. I’ve felt pretty good for the last week that I’ve been on it. It’s very difficult though, as I’m also vegetarian. Leaves very few options. But I’m curious to see how i continue to feel.
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    • Posted

      Hi Gayle,

      I have the problem of having the sensation of bobbing up and down, swaying on the boat heavy and light feeling when seated and walking

      I done MRI,inner ear balance test and cleared, now i am on Amitriptyline by Neuro doctor for a month, improve slightly

      I would feel much better to correspond to you if possible, you can reach me at +6593809412 Whatsapp, Telegram or Wechat internet app

      I am feeling quite worried and trying to find someone to actually talk to

      Alan from Singapore

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