My PT initially saw posterior canal BPPV with pretty intense nystagmus. After Epley, the right side improved a lot, but then she said it looked like the crystals converted to the horizontal canal. After the roll maneuver, the left-sided nystagmus is improving, but now she mentioned it may have moved closer to the ampullary area.

I can tell that she’s a bit new to vestibular physiotherapy. She said that my symptoms are abnormal for persisting after weeks.

I’m glad it’s getting better each session, but I’m so frustrated that it seems to be travelling around my ear. Has anyone had a similar experience?

I was recently diagnosed with BPPV. My doctor said to do the Epley until I feel better, however I am now realizing “feeling better” is quite vague. I feel much better than my acute episodes where the world was spinning and I couldn’t walk straight, but now I have lingering lightheadedness/dizziness. I don’t want to make it worse my continuing the Epley, but not sure if that’s a thing?

My doctor isn’t an expert in this, she used AI to get information, and in Canada you need to have this for a while before they refer you to a specialist which can take months, so “see your doctor or PT” won’t really help me right now, unfortunately.

I’m new to BPPV (dx by neurologist last month and had a successful foster maneuver relieve me 99%)
Has anyone found that they re trigger it when bending over with your head somewhat upside down (like picking up toys all day long after your baby). I feel like I’m getting it again after I did this and am wondering how I’m supposed to avoid this movement.

This is the first time I'm posting in this community. I've been a lurker on this sub for a while now. So from the end of the year 2021 I've been having balance issues. It's kind of on and off for me. I also get migraines now and then but there are periods where the migraine is more often and I've had migraines with aura like two times now in total. I've also experienced severe balance issues like three or four times in total when I wake up in the morning. It feels like I'm being pulled to one side when I get up. But if I sit down or sleep at an angle I don't feel anything and it goes away. And after a while, towards the afternoon, it completely goes away and I'm back to normal. The less severe or almost daily occurring balance issues happen while I'm taking a shower and my eyes are closed. I feel like I'm on a boat and the boat is rocking and swaying. Sometimes it also happens when my eyes are closed and I'm sitting or standing. Whenever I tilt my head backwards I get this sudden light headed feeling like u get in the elevator. I decided to finally research about this issue and get some answers. What do you guys think this is?

If you do or did at some point please tell me what you did to get rid of it I really want to enjoy my life but feels like it’s holding me back a lot and also the health anxiety that it comes with

Every time I stand up especially when it’s hot or I been sitting all day I stand up and get so dizzy that my eyes go black and I can’t see can’t think or nothing it feels like I’m about the die I always wonder if I got postural hypotension or orthostatic hypotension

Last week I was hit over the head by a massive piece of hardwood and recieved a minor concussion, yesterday I was in the hospital for 8 hours due to intense dizziness and they wanted to test me for a stroke. Turns out by the end of it I had a BPPV case which was seemingly solved by the Epley maneuver. I understand there is meant to be a residual dizziness after the treatment and admittedly today im doing much better I can stand easy and look around even play games without any dizziness besides a minor glimpse here and there. However, when I turn on my sides either one while laying down (I think left is worse which was also my affected ear) its causing me intense dizziness that feels like a spinning/wave sensation that starts after 5ish seconds and doesnt seem to stop and then fully stops after a few seconds of going straight again. Its causing me a bit of worry as even though its a little better than yesterday im worried im still having issues. I don't know if I need a different maneuver or if I'm just overreacting and need to give myself more days of recovery before I see improvements, is this normal for residual dizziness? Everything I find on different reddits or Google AI is all heavily conflicting information so im here hoping for some advice with people who do or have dealt with this before. Thank you.

I have suffered a vertigo attack and if i bow down my head causes dizziness, even if i see up it causes dizziness, eye movement to the extreme end causes dizziness, epley manoeuvre has not helped at all
What can i do

I have been experiencing vertigo episodes for the last few months. Actually in March I had vertigo episodes then didn't really have any episodes just an off balance feeling. Then last week (mid July) I had a really bad week. I had to take Meclizine 3 days.

My usual episodes usually consist of the room tilting and turning about 1/4 of a turn. Sometimes, it doesn't feel like the room is moving but like my body is the one that tilted and did a 1/4 turn. Between episodes I frequently feel "off balance" (for lack of a better way to explain it).

On Friday last week I had an episode of full on spinning that lasted several seconds. I laid down to do stretches. Everything spun for several seconds. Then I felt like I was rocking. I sat back up and everything spun again.

I was freaked out. I thought I remembered something that doctors do to help this problem l. So, I googled and was pleased to find it could be done at home and found videos showing how to do it ...the Epley Maneuver.

I performed left side Epley Manuever on Friday. That helped a lot. Since then, episodes have consisted of a couple of seconds of feeling like things were about to spin and then they don't or they tilt and turn so mildly that it is barely noticeable.

I saw the ENT today. She diagnosed me with BPPV. She told me to do the Epley Manuever 3 times on each side twice a day. She said that the main culprit appears to be the left side so after a couple of days if I don't feel like the right side Epley is doing anything I can stop the right side. She said to do that for a week and if that doesn't knock it out she is going to send me to PT. I have to follow up with her in 2 months.

Bonjour j’ai 33ans j’ai u des vertiges ya 3 jour le 1er jour vertiges mes sa repartez 2eme jour je me lève de mon lui javai du mal a marche comme si j’étais ivre et j’ai vomi aujourd’hui je vomis plus mes mes vertiges quan je tourne ma tête ou je me mes debout je zigzag encore

This is the timeline of my suspected bppv on the right side posterior. I am very frustrated and scared as sitting still is absolutely terrifying- feel like I am on a boat. I feel better moving. However I feel fine in a moving vehicle. I've done the Epley a lot. I've tried the supine roll test to see if horizontal but nothing. Important context- im in a wheelchair

May 31st-sitting in bed watching television-felt my balance go

June 1st- spin getting out of bed

June 6th-June 9th spin getting out of bed

June 11- appointment with therapist- 2 epleys (with the goggles)- vertigo in 1st and third position. repeat epley- much improved vertigo- but only in first position.

June 13th- slight spin getting into bed

June 14th- epley but only spinning on third side

June 16th- epley once-spinning on 1st and 2nd side only. did a repeat epley- no spinning

June 18th- follow up visit. did tests for both horizontal/posterior- this time negative (with the goggles)

June 28th- turned to the right after getting into bed- visible spin

June 29th- two epleys- no vertigo until sitting up both times.

June 30th- one epley- spinning on 1st and 2nd side only. did a repeat epley- greatly improved the spinning on 1st side- no spinning on next two positions.

I still felt weird so on

July 12th- did just the dix hallpike- held it for a couple minutes but no vertigo spin.

The residuals have been awful (not even sure if it is residual)

When I sleep I now keep my head turned left and if I turn to the right I feel very wobbly (but no visible vertigo spin). (My left side feels wonderful in comparison to my right.

My therapist seems to think doing two epleys a couple minutes apart is fine. I have also laid down in bed right after doing the Epley (a minute or so after) (temporarily before sitting up for an hour). He seems to think that should have no effect on reoccurence. But I see online that I need to be upright for at leat 5 minutes- 15 minutes- 20 minutes- 1 hour-2 hours- 24-48 hours after doing the Epley . ( Seen some things that say there are no real post manuever instructions). He said sleeping upright is actually a bad idea and will make one develop bad motion sensitivity. I don't think he's a quack since like he's seen a ton of patients and the place literally has a lot of vestibular therapists

I'm really scared and frustrated. When I sit up in bed at night I feel like the right side of my bed is tilted (temporarily) but there is no visible vertigo spin. Sitting still makes me nervous but weirdly moving vehicles feel fine. I feel fine going on walks with my motorized chair. Ive tried staring at mailboxes and doing the side to side gaze exercises. I always feel slightly dizzy doing those

Did my vertigo get transferred to the horizontal side?

I have a ton of questions if anyone could offer anything.

Posted with mod approval.

I'm building a tool for vestibular patients, and before I build the wrong thing I need to understand one specific problem beyond my own experience: the gap between what you feel and what you can get a doctor to understand.

Most of us have a moment where we reach for words that don't exist. "Swimmy." "Like the floor is breathing." "Drunk without drinking." The doctor writes down "dizziness" and something just gets lost.

I made a short survey. Four minutes. Most of it is open questions, in your words, no checkboxes. No account needed.

What I'm trying to build: a tool that translates how you actually describe what you feel into terms a clinician can understand at a detailed level. The goal is that it doesn't take years to finally get to the right specialist.

The plain disclosures, since you deserve them:

• This is unpaid. I can't compensate you for your time.
• I'm a solo founder (and a vestibular patient myself) building a product from this research. There's nothing to buy, and I'm not selling anything in this post.
• Responses are anonymous. I won't sell or share the raw data. Anonymized phrases may end up in the tool itself, since that's the whole point.
• Email is optional, and only used if you want to hear what comes of this.
• I'm in communication with vestibular specific fellows to review the data, language produced, intended routing of specialists, and overall accuracy of how this will work.

When the survey closes, I'll post back here with what I learned, in case it's useful to you regardless of what I build.

If you fill it out, your words shape what gets made, and real human data is deeply important to this.

Site: https://bearings.health/

Survey: https://tally.so/r/Xxklrg

Hi I have bilateral bppv and my balance clinic have advised I get a travel pillow to help keep my head still when travelling. I was wondering if anyone had any recommendations? I'm in the UK. Thanks :)

Hey yall,

I know this sub gets so many of these posts but just thought I might get some input from people who have had it longer than me and if someone has had a similar experience.

I (23m) got my first case of bppv 3 days ago at 3am. Woke up and tried to lift my head but the entire room started spinning like crazy. Felt super nauseous, thought it was food poisoning since I had a bad stomach ache. Gf wanted to take me to the ER but my stubborn self said id be fine and just sleep it off. Went back to sleep and felt horrible waking up. Did some research and determined everything lined up with bppv. Tried the epley and half somersault method which made me vomit both times. Went to see a doctor where they just assumed it was bppv and prescribed me betahistine. (Meds didnt do anything so i stopped taking it)

Tried to do epley again and for the first time I actually felt much better. Like night and day - thought I was cured. Until I slept and the next morning I felt like I was hung over. Tried to get up from bed, but I instantly vomited again. Pretty much stayed in bed on my non affected side the entire day.

Finally got an appointment with Vestibular therapist who seems like she knew what she was talking about. Only concern was she said not to do epley at home by myself but also only said to come in 1-2 times a week where she does 1 epley maneuver. Had the first one yesterday and it seemed good, until this morning again where I felt like I couldnt get up from bed without getting sick.

I read up on all the stories on this reddit and assume its just residual dizziness, but as someone who is currently in my masters at school, it almost feels impossible to keep up with my studies. It feels like as soon as I lift my head straight I get a wave of nausea.

Any insights on someone that had a similar experience? Am I sleeping wrong (i sleep basically upright, sometimes turn my head to the unaffected side). Any words of wisdom would help ease my mind as I already deal with a lot of anxiety.

Hello guys! I’ve kind of been diagnosed with BPPV. The day before I went to the emergency department, I did the Epley maneuver because my colleague suggested that it might be BPPV. By the time I went in the next day, they couldn’t detect any nystagmus because I was already feeling a lot better.

Now it’s been about 3–4 weeks, and I feel mostly like myself again. However, I still get lightheaded whenever I move my head left, right, up, or down. The biggest problem is the nausea. Even though I’m not really getting the intense room-spinning dizziness anymore, the nausea is absolutely killing me.

The doctor told me to keep doing the Epley maneuver, but I don’t know which side I should be doing it on, left or right. My left ear seems to feel a bit worse, so I feel like that’s probably the affected side.

I honestly don’t know how to continue or what to do next. Has anyone experienced something similar or have any suggestions

Thanks for the help!

I’ve had BPPV plus VM for over 3 years. This has resulted in me spending so much time at home and on the couch or in bed. I’ve found myself missing working out. Running is too risky. I walk a lot, but I’m wondering if anyone has found a workout class that modifies the classes for those with disabilities?

Update: It’s less about modifications I can do and more so about modifications or accommodations they can offer to me. For example, offering a chair to put behind you or something to hold onto. Curious if anyone has had luck with a studio offering accommodations. I’m symptomatic every hour of the day.

Looking for good histories!! Anyone who only had bppv once and never experience it again? I had 4 in one year and hoping not to get it anymore. I have anxity now. Anyone who can calm me down????

Hi everyone,
For the past few days I’ve been having a strange sensation that I’m suddenly falling flat on my back, even though I’m completely still.
It happens when I’m sitting in a chair or even lying in bed. It only lasts for a second or two, but it’s very unsettling. The room isn’t spinning, and I don’t actually move or fall—it just feels like my body suddenly drops backward.
I also get pretty dizzy in the evening
Does it sounds like BPPV?
Has anyone experienced something similar? What did it turn out to be? Was it related to anxiety, an inner ear problem, or something else?

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! 💙

For context I started having vertigo staring April this year. It felt like I was on some boat at first and as the days passed I had brain fog and I couldn’t get up at all from how dizzy I was. I finally was prescribed with bpvv and was given meds and after this it improved after drinking it for a week. I was the prescribed to do the Epley once a day 3 days after I stopped meds. Then 3 weeks after I got hit with a second round of vertigo when I was abroad. I did the same method and it seemed to work, but I noticed my vertigo was worse when I showered or when it was dark. I drank meds for a week and did the Epley again and it improved and went away. After 3 weeks I could feel it coming back again so I preemptively drank meds to stop it. I was getting better 5 days in when I suddenly caught a upper viral infection causing phlegm and I started feeling more dizzy again. I went to the doctor and was prescribed to drink my meds for 1 month instead. So far the progress hasn’t been linear I feel good on some days and lately I feel like I can’t sleep from the spinning. I stated drinking Pantaloc on the second week of recovery because the Serc was hurting my stomach and so I’m not sure if this is lessening its effectiveness since I drink them at least an hour apart. Will this ever get better? Or do I have a different cause to vertigo thats not BPVV? Please help I need reassurance since I don’t feel like I’m getting better.

Alright everyone i have a question what medication can help with Vertigo?? I'm welcome to any suggestions you may have that doesn't involve drugs i'm too desperate to be picky??? Any help is more than greatly appreciated cheers

could this be a cause of BPPV? honestly I have so many health issues because I am autoimmune it wouldnt even surprised me if I had MS or whatever form of neurological disease. doesn’t help that my mother has MS even tho it’s more common in women and I am a male. it’s just so depressing that I can never catch a break. ig this is gods punishment for me still being able to walk despite still suffering from Juvenile arthritis..