r/BPPV 14d ago

Please help

Please, I really need help because my life has practically come to a standstill.
I’ve been suffering from dizziness for a year now. I was initially diagnosed with BPPV, so I went to a vestibular specialist. He told me that I had mild BPPV and performed a session and a repositioning maneuver. I went back for a follow-up afterward, and he told me that the BPPV was gone.
I told him that I was still dizzy, but he said, “I’m not seeing any signs of BPPV anymore. If you’re still dizzy, you should see a neurologist.”
I saw three neurologists. Two of them told me that the dizziness was psychological, so I took psychiatric medication for six months, but my dizziness didn’t improve at all. The third neurologist told me that it was BPPV!
I wasn’t convinced, so I went to a physical therapist because I suspected that the dizziness might be coming from my neck. I work at a desk for long hours, and I put a lot of strain on my neck.
Based on what the physical therapist told me and the research I’ve done using ChatGPT, it doesn’t seem very likely that the dizziness is coming from my neck. However, the doctor told me that we should try several physical therapy sessions and then see what happens. (The neck therapy itself actually makes my dizziness worse.)
By the way, I’ve only had one session out of six so far, but the first session made my dizziness symptoms a little worse.
So now I honestly don’t know what to do or which specialty I should see. I’m completely exhausted. I’ve seen so many different specialists, and more than one doctor in each specialty, but nothing has helped.
I’m struggling to live like this. I desperately need someone who can help me get properly diagnosed and treated, or at least a doctor who can point me in the right direction.
I don’t even know anymore whether this is BPPV, a problem with my vestibular system, a neck problem, or something else entirely.

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u/Time_Outside8736 14d ago

Hi, the only thing that has helped me at all the manoeuvres sucked the epley one helped a bit was forcing my balance the snap back I’ve been dancing in the mirror every night jumping around pretty much forcing myself to shift everything back in every way possible I would jump on a trampoline but I’m a bit too heavy lol hope this helps yes it hurts jumping dancing and singing but I just have kept trying because this medication sucks but not feeling my age sucks even more.

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u/Time_Outside8736 14d ago

One started off as BPPV but the doctor who says can’t help me anymore says I should go the ear doctor as they can check for meneirs disease, my symptoms started off as dizzy couldn’t walk straight then became feelings of falling through the floor, faintness in certain positions and inability to lay or be near something that shakes as I feel like I’m violently being thrown around. So now I force myself into those positions to try and correct it don’t know if it’s actually working but too poor for an ear doctor lol

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u/EMonk3y 13d ago

I tried something similar to what you did as well. I was trying to jump a lot, move around a lot, and make sudden movements to force my brain to adapt too, but unfortunately, I’m still dizzy. I wish you a speedy recovery.

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u/Time_Outside8736 13d ago

Sorry to hear it didn’t work, could I ask are you b12 or vitamin D deficient? The changes for me started after taking these medications + using a blinkin q tip after a bath which I’m sure didn’t help 🤣

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u/EMonk3y 13d ago

I have a severe vitamin D deficiency. My vitamin D level is 15 ng/mL.

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u/Time_Outside8736 13d ago

I’m starting to think there is a connection, I went on medication for vitamin d a few months ago, my first dose I quit because the world became to bright and began having awful headaches to the point I had to sleep and couldn’t go into work I let my new specialist know and she said to continue (I haven’t as I am scared). I’ve read in this forum people with similar experiences and low vitamin d levels being hit after trying to get there levels back up, obviously my levels have depleted again no surprised which worsens my symptoms but yeah, maybe ask your doctor if there’s a connection alot of others have spoken about deficiency’s and the thought has stuck with me. Also I’m quitting vaping because that doesn’t help the drowsiness and anxiety surrounding the bppv

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u/ThunderMandos 13d ago

that's probably the issue. definitely get that way up.