New to the forum had persistent bppv for months

Posted , 6 users are following.

Hi everyone. 

I hope you all don't mind me sharing my long story here. I'm just needing some support and it would be even nicer if some one has insights for me.

my story is: I've suffered with vertigo on and off for years. I'm 41.

my first few attacks were in early adolescence. Where I would get vertigo attacks for 12-24 hours and vomit. But then it was over. My mom said it was a migraine.It completely went away until after I had my first child 10 years ago. It started on and off but then escalated to pretty much 24/7. After a particularly bad attack I went to the ent who said it was vestibular neuritis and sent me on my way with all the Medes. It never went away. Eventually. After almost 2 years I saw a neurologist who gave me the BPPV diagnosis. After a few epleys it was better and soon I fell pregnant with my 2nd child and it completely went away for over 3 years.

In 2013 it came back with a vengeance and I've been battling it on and off since then. Last year was a good year and I was fine for most of it. However, my husband had a nervous breakdown and after being so strong for most of it I crashed in November last year. I've been seeing an audiologist who's been doing epleys and semonts but I feel better for a few hours and then back again. She says its cupulolithisos and bilateral. 

I'm exhausted from this all and hardly getting any rest since when I lie back its there, and turn left or right.

I've been wondering if anyone has sensory processing disorder and struggles with vertigo. Ive pretty much always had issues with odors, crowds, noise etc and since my husbands depression I've been completely overloaded and now wondering if there's a link? I'm so depressed with all this and just want my life back with no vertigo.

I'd appreciate all and any advice. 

2 likes, 10 replies

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10 Replies

  • Posted

    I have alot of that. Been dealing with it for years. In August it jumped me hard and won't let off. Was dizzy alot for years tho. Now I get some degree of vertigo every day. And dizzy all the time. After 6 months of doctor apps every week I got into a neurotologist. Told me the treatments and therapy I been receiving aren't working cause I don't have bppv as diagnosed 11 years ago. It is definitely menieres decease. The fluid in my inner ear is preventing my therapy from helping. I have been to dozens of docs and specialists. Even a neurologist. They had it wrong. I finally had to travel a hour and a half to a University medical center to see a real pro.

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  • Posted

    I can't offer you any help, Hayley - just sympathy and commiseration. I've had it all my life too, even in childhood. Just like you, mine comes and goes. I too got a diagnosis of BPPV 30 years ago and was put through all the manoeuvres but the effect didn't last long. Currently in the middle of a very nasty attack that's been going on for five weeks - though it's improving now. Saw an ENT doctor a few days ago but didn't get any change out of him, and he was thoroughly rude to boot.

    He did, however, order syringing of my left ear, which was heavily blocked. Illogical though it seems, I have noticed throughout life that my vertigo tends to get worse when that left ear is blocked, so I'm hopeful there'll be some improvement. If it hasn't cleared up (well, as much as it ever does) by the end of this month, I'll ask my GP to refer me to a specialist vertigo centre. We have several of these in the city where I live, though I don't know whether they exist in the UK.

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  • Posted

    Yes the ent told me I had early menieres but I never had any hearing loss. And the audiologist said definitely not. He just fobbbed me off from day 1. She did say it is probably MAV causing bppv. Apparently there's a link which they don't understand.

    This is just so depressing to know that so many people have vertigo yet we all carry on suffering and no one seems to have any clue as to how to treat us. I'm sick of my kids seeing me like this and I'm sick of going round and round (excuse the sick pun) and getting nowhere.

    I hope we all eventually can get some resolution.

    I live in South Africa but I'm tempted to travel to the USA as it seems like there are doctors there who may have a clue. I'm just pretty feeling defeated after all this time.

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    • Posted

      At first the ENT said it probably wasn't menieres. After my audiogram and VNG he then said it could be menieres. My GP said could be menieres. Neurologist wasn't convinced it was. Therapist said probably not cause I wasn't deaf in that ear. ENT said I needed to travel to see the neurotologist. He did audiogram again. Checked me out said definitely menieres. Said not all menieres ppl are totally deaf. You lose certain range. He wants me to try to get into the audiologist for testing when the vertigo is real bad.

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  • Posted

    Oh Hayley....it sounds a really gruelling experience...all of it. 

    I've just had my first truly frightening experience with it a few days ago at 70 and its still affecting me. I have no advice for you just I admire your tenacity and strength. 

    My GP says mine will eventually go...but this forum tells me that possibly isnt so. 

    I hope you find a cure for yours. 

    Sarah 

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    • Posted

      Thank you for your response. I have a travelling lifestyle and dont want it to impede that. ....Vertigo is a really under rated condition. I had no idea it was so awful. I just thought it was about heights or sea sickness! 
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  • Posted

    Clearly you have BPPV as the positional maneuvers help you, at least temporarily.  Cupulothiasis needs more exercises as the crystals stick to the hair cells, rather than floating in the fluid surrounding them.

    If the phenomenon is too frequent for daily living, one may consider surgically plugging the semicircular canals.  You may discuss this with your ENT physician.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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    • Posted

      Thank you! This does give me hope! I'm terrified of surgery but I'm getting closer to considering it as I'm so sick of all this. At the money I'm hardly sleep as each time I turn I spin. Luckily it hasn't brought me to the point of vomiting again but my quality of life is pretty much in the toilet.

      Thank you everyone for taking the time to reply to me.

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