Joni

I'm on both sides of the vestibular world as a patient & physical therapist; Ambassador for Vestibular Disorders Association

[Joni @dizzymeblog]

Grateful that my #dizziness puzzle was figured out before PPPD became a popular diagnosis. At the time vestibular migraine was the wastebasket diagnosis, now it seems to be #PPPD I didn’t fit the criteria with no anxiety, but that wouldn’t have mattered to some.

[Joni @dizzymeblog]

@ShaneryBEEq @TimJack12355039 @onbalancephysio The ringing slowly got quieter until it went away completely. It did take a while but the loud ringing stopped maybe after a couple of weeks. My hearing improved when the packing absorbed and removed.

[Joni @dizzymeblog]

@neurophysioPT Agreed. Most people just need to get to the right specialist. For me the first vestibular specialist said we could do more involved testing but it would be unpleasant and would just confirm his dx. That testing may have shortened my journey but who knows.

[Joni @dizzymeblog]

@grumpycat96 Both sound like they can be BPPV which is often easily treatable.

[Joni @dizzymeblog]

Friends &fam often come 2 me 4 dizzy advice.Most often the problem is #BPPV Frustrating when someone then sees specialist who confirms it, doesn’t treat it,but gives YouTube exercises to follow & says that works better than PT. Is this your experience #vestibular experts?

[Joni @dizzymeblog]

@grumpycat96 Make sure the PT has expertise in vestibular rehab. I believe Penn Medicine has a dizziness and balance specialty clinic in Philly. Try to see a neuro-otoligist

[Joni @dizzymeblog]

@TheFUNStudy I would be curious to see the crossover on hearing loss and vestibular dysfunction especially in children bc it’s often under recognized and can cause significant fatigue.

[Joni @dizzymeblog]

@DavidHerdmanPT My favorite thing is to turn anything into a song when giving a toddler instructions. You can turn everything into a fun little nursery rhyme. For ex “we look up to the sky, we look down to our toes, we watch them wiggle wiggle, then see how the fast the airplane goes”

[Joni @dizzymeblog]

@rcpointdujour I can see it for ice skater training, which is where the concept came from I believe. Many autistic people do benefit from visual-vestibular training, but I don’t see the connection here.

[Joni @dizzymeblog]

@Hearing_balance Maybe I’m missing the point. It can be…but should it? And even those with thorough assessments, answers don’t always come quickly. I saw MANY “experts” before finding the right one with the right answer. But that’s a different topic for a different day.

[Joni @dizzymeblog]

@VestibularRehab If only the answers were as easy as listening to a podcast…but appreciate the education nonetheless. Was surprised when I attended a cont Ed course on VRT and it wasn’t even mentioned.

[Joni @dizzymeblog]

@beatlesgirl91 @therapypt I’m really sorry to hear the crappy care you’ve had but hopefully you’re in good hands now and on the road to recovery.

[Joni @dizzymeblog]

@beatlesgirl91 Hey! I think I understand them all now. Some for MdDS- any sustained movement; and others for the perilymph fistula- vibration, sounds; then other things from overusing vision- fluorescents, patterns. So much!!!

[Joni @dizzymeblog]

Not too long ago this peaceful scene was a collection of triggers for more than one of my #vestibular disorders. The movement of the ocean, the heat, swimming...but now I am still and it is peaceful again #dizziness #DontGiveUp

[Joni @dizzymeblog]

@VestibularFirst Good for generalized care but limited for specialty vestibular practice. So many diagnoses not included.

[Joni @dizzymeblog]

@thedizzycook Ignorance.

[Joni @dizzymeblog]

@Keystoneneuro How do you treat otoliths dysfunction? What is typically causing it?

[Joni @dizzymeblog]

@IVRT123 @LisBteamdizzy Someone out there is definitely pushing betahistine. I just started it and it wasn’t recommended by anyone before in all the years I spent in the dizzy world.

[Joni @dizzymeblog]

@IVRT123 2/2 but perhaps to otolith issues . Not sure, but it is consistent for me. When hydrops flare, I fall to the right again. When really bad rhomberg picks it up. Plf is rare so not surprised ur pts can generally do so. It does have to be done rapidly though vs just side stepping.

[Joni @dizzymeblog]

@IVRT123 1/2 I hear ya. Dr. Hornibrook has some fascinating videos of people doing them before and after on you tube. I have a before and after video of myself as well. Quite dramatic. I fall to the right again when the hydrops flares so I don’t believe it’s specific to chronic plf but...

[Joni @dizzymeblog]

@sickandsalty Yes, after finally getting the appropriate diagnosis and treatment,I sent a respectful email to many of the past docs that missed it. One, who was particularly terrible, even asked for more info so he wouldn’t miss it again. Others ignored.Some acknowledged. Was well worth doing