Vesties’ Village

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Tabs
 Tabs
(@tabs)
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Joined: 12 months ago
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Hi everyone, I'm 46, I live in Canada. My issues started in early July with BPV when I lay down on either side. Lightheaded and dizzy, progressively weaker. Iron ferritin stores where severally depleted and my dizzy symptoms were chalked up to that. Anemia was treated with supplements and IV iron infusion therapy (5 sessions). Still ongoing dizziness and vertigo, doctors wouldn't listen, just kept saying it takes the body awhile to recover from anemia. Ferritin stores are awesome now but elevated RDW levels (red blood cell distribution, they should all be the same size but some are larger) this is usually associated with iron deficiency or liver disease or alcoholism but none of these are factors. I have some hearing loss in left ear and tinnitus, was able to see ENT right away (waiting list is 12 months! But I was prioritized due to hearing loss) ENT put me on prednisone, which I lasted 4 days as the side effects were unbearable. Had an MRI which only showed fluid buildup behind left ear. ENT says to keep pushing myself and stay very active and my brain will adjust. If I don't feel better in 2 months to see him again. Told me I was "choosing to overreact" and pretty much wrote me off. I have a fabulous vestibular physiotherapist but after 6 sessions it hasn't made much of a difference. I've tried acupuncture as well. I have pressure in the back of my neck, constantly off balance and swimmy. I have no GP so that complicates things as I have to wait to see a walk in clinic doctor. I'm wondering about vestibular neuritis or AIED autoimmune inner ear disease. Every tiny movement in my head causes vertigo and dizziness. The last doctor I saw a few days ago said it's "vertigo" ( no kidding?!) And prescribed betahystine Serc 16 mg 3x a day. I'm on day 3 and feel worse. I could barely stand yesterday. I'm feeling very defeated as my symptoms are debilitating and I can't really explain them and I'm getting nowhere with doctors. Any advice/thoughts are appreciated! Thank you for reading, sorry so long! 


   
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breddiskirmen
(@breddiskirmen)
New Member
Joined: 11 months ago
Posts: 1
 

There are no major risk factors for BPV, but there’s some indication it could be an inherited condition. Many people with BPV have relatives who also have the condition.

There are also other conditions that can make some people more prone to developing BPV.


   
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Sea-ing
(@sea-ing)
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Joined: 10 months ago
Posts: 10
 

Hi Tabs!

You mentioned hearing loss. How serious was the loss? Was it sudden? I have unilateral sudden sensorineural hearing loss and have been diagnosed with chronic vestibular neuritis. Vestibular therapy didn't work for me, either. Nor are vestibular suppressants showing promise.

My understanding is that betahistine had FDA approval removed decades ago in the U.S.; studies were equivocal about effectiveness with regard to vertigo in Meniere's disease. 

Have you experienced any improvement?


   
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