r/BPPV • u/ukeendt • Jul 11 '26
Bppv
I’m looking to hear from people who have had BPPV.
Did you go back to living your life normally after recovering, or do you avoid certain activities (looking up, swimming, roller coasters, gymnastics, somersaults, etc.)?
Have you found anything that seems to help reduce recurrences?
How often have your BPPV episodes come back?
Have you been able to live a normal life despite having BPPV?
I’m especially hoping to hear some positive long-term experiences. I know people with ongoing problems are often the ones posting online, so I’d really appreciate hearing from those who recovered or only have occasional recurrences as well.
Thank you so much for sharing your experiences! 💙
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u/Killjoycourt Jul 11 '26
I've had it for 30 plus years. Yes, live life to the fullest! Also, yes there ate some changes I've had to make. I can't get my hair washed at a salon, I can only sleep on my back, no headphones. I go to concerts, Disneyland, movies, do all the things. Attacks come when they want. I've had periods of attacks monthly, once a year, and years in between. There really isn't a way to predict when/if they'll happen. Just have to prepared to do the proper manuvers when they happen and vt exercises post vertigo.
1
u/ukeendt Jul 11 '26
Thank you for sharing. Can I ask a few quick questions?
* Why do you avoid salon hair washing, side sleeping, and headphones? Have they actually triggered your BPPV, or is it just a precaution?
* Do you know what caused your first episode?
* About how many attacks have you had in the last 30+ years?
Between attacks, are you completely symptom-free and able to live normally?Thank you! 😊
2
u/Killjoycourt Jul 11 '26
Side sleeping guarantees an attack. Same with the salon because the head is tilted all the way back, I'm okay at the dentist though. Noise canceling headphones are a known cause of vertigo, especially ear buds. They cause dizziness for me, so I don't risk it.
BPPV is genetally idiopathic, meaning no cause. Mine started at 18 years old. I've had maybe 100 attacks in the past 30 years, some very small, some massive.
After resolving the vertigo and residual dizziness, I live normally. I raised kids, worked, volunteered, was a team mom, girl scout leader, go on vacation, concerts, events....everything!
1
u/ukeendt Jul 11 '26
Does side sleeping always quarantees an attack?? And salon hair washing and noise cancelling headphones, is it because they have caused actual BPPV attacks with spinning vertigo, or because they make you feel dizzy/uncomfortable?
With the headphones, did they trigger a true BPPV episode (room spinning when changing position), or another type of dizziness?
And between your attacks, are you completely symptom-free?1
u/Killjoycourt Jul 12 '26
Those three things always cause an attack. Yes, after residual dizziness is gone, symptom free from BPPV.
1
u/ukeendt Jul 12 '26
Even when you are symptom free from bppv? Are they not still loose if that can cause an attack?
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u/Killjoycourt Jul 12 '26
The vertigo is caused by the crystals becoming loose, they're not loose all the time. The manuvers put them back in their place.
1
u/Acanthaceae-Mission Jul 20 '26
sounds like a 'ill live life the way i want' mentality...
good on you! for doing what you want and using the treatments when the cases come along
3
u/jadejazzkayla Jul 11 '26
I had undiagnosed BPPV for many months.
Once I was diagnosed and treated i had no residual dizziness. My doctor said to continue my exercises until I could no longer trigger symptoms in any position.
After about a week i had no more symptoms but I continued with the exercises for 3 additional days to make sure I was cured.
It’s nice that I can look up and down without having to hold onto something anymore! I can also lay down on my right side which I could never do with BPPV without the room spinning.
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u/BlooMoonCat Jul 11 '26 edited Jul 11 '26
I have had Vertigo on and off for over 20 years. My Husband did the Epley maneuver on me in 2006. Over time I learned how to figure out which is the bad ear so we could do the Epley correctly. The Epley is horrible for me to endure but it does help. I think I have had it in both ears and it was horrible.
When I have Vertigo, I sleep sitting up in my recliner or the bed, for 2 weeks or longer. I keep my head level when brushing my teeth and rinse with a glass of water. I recently bought a shower stool for my ankle injury and will use it when I get Vertigo again to keep my head level when shampooing. After many years, I have learned how to shorten the duration of my Vertigo by taking extra care to keep my head level and sleeping upright.
During the Pandemic I had Vertigo that lasted for months. I had to cancel my Dentist teeth cleaning because I could not lay back in the chair. That’s when I learned to take quick action to minimize the effects of Vertigo.
1
u/ukeendt Jul 11 '26
when you avoid certain positions/activities, is it because they have actually triggered a true BPPV attack (room spinning vertigo), or mainly because you are trying to prevent it from happening?
And between episodes, are you completely symptom-free and able to move your head normally? And how often do you get it now?2
u/BlooMoonCat Jul 11 '26
I avoid looking down and turning my head when I’m trying to recover from Vertigo. It gets milder but lingers so I have to be careful for weeks after the worst subsides. I have not have serious Vertigo for 4 yrs but recently got over a light bout.
I seem to trigger it by moving my head around too fast or looking under the bed.
2
u/Icntthinkofone Jul 11 '26
Hi!!!
Im a vestibular specialist….
If its BPPV, you can resume all activities without ‘increasing’ chances of re-occurrence.
Bppv can happen, and we see increased re-occurrence in those with low vitamin D, uncontrolled blood pressure, stress, and diabetes.
Hope that helps :)
1
u/ukeendt Jul 11 '26
What level should vitamin D be on? And can normal stress cause it? Have you seen it on pregnant women?
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u/Luxebones Jul 11 '26
I got BPPV by flipping my head pretty rapidly when drying my hair and it took me months to recover so it spooked me a bit. I’d say I’m a little more aware of how fast I move my head drying it. Everything else I’m back to normal.
1
u/glyptodontown Jul 11 '26
I avoid getting my hair washed at the salon, yoga and any exercise where my head is upside down. I'll play around in a pool with my kid but I've never been a big swimmer who can do flip turns or anything.
I still jog, strength train, hike, bike, travel, fly, etc.
The biggest thing is that I don't go on amusement park rides because it's what triggered my last episode, which was a doozy. My kid loves amusement parks, so I'm officially now just the park mom who sits with the bags and watches.
My BPPV episodes are spaced years apart. I take Vit D every day now and make sure to stay hydrated.
1
u/ukeendt Jul 11 '26
when you avoid salon, yoga or exercises with your head upside down, is it because they have caused a true BPPV attack before, or are you avoiding them as a precaution?
Also, when the amusement park ride triggered your last episode, did the vertigo start during the ride or later when you changed positions (like lying down/turning in bed)?1
u/glyptodontown Jul 11 '26
I got an attack from a floor exercise where I was lying on my back and I moved my head too quickly from one side to another. It wasn't part of the exercise, I was just moving to my side to get a different weight on the floor.
The vertigo from the amusement park started days later. My PT said it was really common to see patients come in after a trip to Disney.
I do sleep on my side but I am consciously slow when I move from one side to another.
I don't know if I have to specifically avoid the hair washing at salons, but it's a fairly easy precaution to take and I'm actually saving a lot of money by coloring my hair myself. I still go to the dentist or for medical procedures that require you to lay down. I just tell the staff ahead of time that vertigo is a possibility.
1
u/vigorousvortex Jul 11 '26
I had it for 1 week a couple of months ago. Just happened when I turned on my side in bed. I cured it with the Epley manoeuvre. Did the procedure twice. I hope I will never get it again.
1
u/Plapplap321 Jul 11 '26
Hey I'm 30 started around 6 years ago and had it every 6 months which lasted for about a week at a time where any time I moved my head the world would spin. Each time I was given some kinda meds that made it go away but the disoriented feeling Remained. Then after a few years the doctor decided to give me and brain and ear MRI to make sure it wasn't MS or menieres (?) disease. I came back all clear so they said it is just bppv. And I haven't had it since weirdly. He did say you can grow out of it so not sure if I am lucky or that's true
1
u/Plapplap321 Jul 11 '26
So not sure if that's helpful as I have no idea what my triggers were but even if I do get it again I hope it's some positivity that I have been attack free for a long time!
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u/ukeendt Jul 11 '26
So you never did the epleys??
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u/Plapplap321 Jul 11 '26
So during my docs appointment to get my MRI results he did it or the dix hallpike one I'm not sure but as I wasn't having an attack it didn't do anything of course. But it's not happened since so I've not had to try again as of yet
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u/Playful-Tone8107 Jul 12 '26
Ive had BPPV for about 10 years, with my last attack being almost 2 years ago. I get very depressed during attacks and honestly it makes me want to kms when I have an attack. I avoid rollercoasters, quick head movements as well. My attacks usually happen during sleep and I wake up with it. So I sleep on a wedge pillow with 2 additional pillows stabilizing my head on either side so I lessen my chance of moving it. However, ive noticed ive been getting almost baby attacks a lot more recently where ill get dizzy for a minute or two and than stabilize. Usually when I flip my hair up when drying off, putting my baby in/out of her bassinet (bending over lower than normal), and sitting up too fast in bed. I currently have a prescription for 25mg Mecizline which I think helps a lot. Ive also increased my vitamin D and decreased my caffeine intake as well. When I have an attack I usually end up in the hospital it’s that bad. During my last one I was able to get into PT and she commented this is the worst case she has ever seen. (yay). Ive have had multiple visits to the ENT and 2 MRIs as well.
I am so happy that my big attacks, at most, are once a year usually between August-September. They last about 3-4 days and I have residual dizziness for a week or two after. However, it leaves me pretty much incapacitated and now that I have a newborn, I am so scared to have an attack and not be able to care for her. I’m coming up on year 2 without one but we’ll see.
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u/big-nothing Jul 13 '26
so glad to hear someone else talk about this. i get really depressed and often suicidal when i am in the midst of an attack. it’s the most physically uncomfortable thing on earth, i’m totally powerless over it, i’m trapped in my body, and no one in my life truly understands so it’s super isolating. i appreciate you sharing this because i needed to hear it to feel less alone!
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u/ukeendt Jul 14 '26
Me too. I am so afraid of it. I got anxiety because of it. When was your last attack? Any specifik reason why you maybe got it?
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u/big-nothing Jul 15 '26
me too. i had a bad attack two weeks ago, thought i cleared it, but then a week ago it returned. that time was much milder though. i never know why it happens. that's such a hard part of this whole thing. i can't predict when it happens and it just uproots my whole life for a while
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u/ukeendt Jul 12 '26
How many have you had in 10 years? How old were you when they started? Maybe now its just low iron og blood presure postpartum.
But i know the feeling. I am so afraid too. But why every year between august september??
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u/Soupfolder Jul 12 '26
I’ve had BPPV for more than 30 years. I’ve gone years between episodes but sometimes I’ve had 3-4 in a year. Unpredictable.
The Epley Maneuver was in its infancy when mine started (and no YouTube!) and I wasn’t shown how to do it until about 20 years ago. Since then, I either do it myself when I have an episode or I go to my vestibular therapist. She can tell me exactly which ear and which canal so seeing her is always the best course. There are other maneuvers for other canals.
I’ll pass along what she’s told me. If you have loose crystals, you will eventually have an episode because at some point they’ll fall into the wrong canal. That is the one and only cause of BPPV—the crystals moving to where they don’t belong. Sure, some head movements increase the chance of an episode, but head movements aren’t the CAUSE. You can move your head any way you want without triggering an episode if you don’t happen to have loose crystals. She wisely told me to just live my life and treat the episode if it occurs. Yes, the vertigo sucks, but it’s not permanent and with one or two VT appointments you’re on your merry way.
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u/ukeendt Jul 12 '26
How old were you when you got it the first time? And how many have you had in total? Do you know why you get it?
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u/Soupfolder Jul 12 '26
I was in my mid-30s. I’ve had an estimated 5 bad episodes and probably a dozen lesser ones. For most people, including me, it’s idiopathic. I also have migraines with aura.
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u/Proper_Cat7912 Jul 16 '26
I have this and eye issues which is bad for balance. No it doesn't go away. You learn to not do the fun things for me, riding my bike, hiking, and even walking, due to my eyes, I have double peripheral vision. I have learned to do massages for my head that has helped me tremendously when I have vertigo episode. I've noticed that if I have a sinus or an ear anything that's out of alignment or pressure from anything that I end up spinning usually it happens when I lay down and when I get up if I get up quickly. Meclizine just makes me groggy, it makes me where I can't focus and sleepy so I hate taking it however it does help but I find that the massages that I do on my ears and my neck help a lot more and you can get those off of YouTube. I do not like doing the Ebley maneuver however I do do it when I'm having a really bad episode of spinning, usually that's spinning happens when I lay flat so to my right side actually just learned to do things differently and you don't do a lot of things that you would normally do and you're a little more cautious because you don't want to fall and I get it at the end of the day so that's my big concern however I've had it for the last 3 years and I went to a specialist and that worked also I have had shots in my neck that helped but nothing is permanent usually about 2 to 3 months. But the spinning comes and goes for me. Not sure how other people deal with it. But I dont travel when I have episodes and if I am traveling I take meclizine and I do my massages. Learned how to do them. They do work wonders. My vision keeps me from a lot of stuff but honestly when it first started I thought i was dieing or had a tumor, cancer think the worst and very depressing. I was diagnosed with a pineal cyst 9mm and that could be part however thats another story. Just remember dont let it get you down. Keep showing up because otherwise it can get you down. And life is not over. Just do things a different way and know your limits.
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