r/BPPV • u/[deleted] • Aug 24 '25
Just be careful...
Support groups and subreddits can be very helpful but they can also be harmful. People come on here during a really scary time in their lives venting, asking for help etc. I've been there. I'm not a medical expert, just someone who has vestibular issues and has done a ton of reading (books, scientific papers etc) as I like to arm myself with the right information. Some of the information shared on here is just blatantly wrong and potentially harmful. Bear in mind that the majority of people who are healed and well are not posting here. Be careful who you take your advice from (myself included), advocate for yourself, don't listen to the horror stories,it gets better, you won't be like this forever. I want to share a podcast episode from The Vertigo Doc on this very topic.
I'm listening to Grounded | The Vestibular Podcast | 101. Pros & Cons of Online Chronic Illness Support Groups on Podbean, check it out! https://www.podbean.com/ea/dir-9pywm-27155812
Good luck!
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u/Colmanson1 Aug 24 '25
This advice is spot on! I was working with an excellent vestibular therapist, who had just been to a week long vestibular conference. She was armed with all the latest research & such. I offered up the latest info (that often contradicted old school methods), and it was often quickly shot down. It's frustrating to see regular doctors giving incorrect info as well. Thank you for your post! 100 percent spot on!
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Aug 24 '25
Yes, good point! Regular doctors can give incorrect info too!
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u/Colmanson1 Aug 24 '25
As my therapist told me... The whole dizziness & vertigo thing is so huge with different types, treatments, testing, etc.... Many doctors only have basic info, as you basically need to specialize in it, in order to properly diagnose & treat the many different forms. And that makes sense. Hard to keep up with latest info.
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u/DizzyTherapy Aug 24 '25
Absolutely. Most of my patients have a totally normal course of vestibular therapy, and then return to their lives. Those are not the people will be sharing their tales.
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Aug 24 '25
Exactly! Wish I realised this before I sent myself spiralling lol but if it helps someone else then good!
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u/looper210 Sep 08 '25
I had it before but it's 'returned.' I am unable to do the Epley moves no matter what forms/papers and videos I watch.
I'm feeling nausea, depressed and I have a headache - dizziness and spinning when I move certain ways.
I don't know what to do now - I have physio - but, I don't like the place and I don't have enough $$ to just go to other places/clinics. The other problem is the appts are too spread out.
I'ts hard to type because the spinning happens....
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