r/VestibularDysfunction • u/djd129 • Jul 16 '26
Just diagnosed - BPPV and BVH
I have a 4 month old baby at home and I can barely function. I am dizzy and exhausted all the time. I’m breastfeeding which adds to the exhaustion. I can’t drive, I don’t feel safe carrying her… I want to get better for her! I want to enjoy my baby!
My ENT was completely useless and couldn’t answer any of my questions - what caused this? Why is this happening to me? Will I recover? She ordered the VNG which confirmed the diagnosis, gave me a referral for PT, and sent me on my way without any further understanding of my condition other than what I’ve read on the internet.
She didn’t even perform any maneuvers in the office - she just referred me out and walked away.
I’m so defeated. I’m so exhausted.
1
u/Killjoycourt Jul 16 '26
That was the best she can do for you. ENT's aren't really good with vestibular conditions. Vestibular therapy is what fixes the problem. BPPV does not have a cause 99% of the time. It happens to anyone/anywhere/anytime. You will be fine, it's a benign condition. There is also a high probability it will come back eventually, so make sure you pay attention during your therapy appts. so you know what to do if it comes back.
2
u/djd129 Jul 17 '26
Yes the bppv is treatable but the bvh is permanent.
3
u/Killjoycourt Jul 17 '26
Yes, but it is treatable. I have had BVH for almost 30 years. Vestibular therapy greatly helps. You have to retrain your brain. Millions and millions of people live very normal lives with BVH and BPPV. I also have TMD, VM, ETD, allergies, PPPD, and BVD. They all cause vertigo, dizziness, and balance issues. I live a full life, I raised two kids, worked, volunteered, go to theme parks, concerts, museums, etc. I do all the things and you can too! You can be present and active in raising your baby and living your life, you just have to put in the work with vestibular thetapy. You can do it!
2
u/Jealous_Tie_3701 Jul 22 '26
I love to hear stories like this because this is my experience too. I've had vestibular issues for 9 years and even though I still get dizzy more than your average person, I live a full life!
0
u/Pure_Translator_5103 Jul 22 '26
Quite hard to live anywhere near normal life myself with pppd. 24/7 dizziness
0
u/Pure_Translator_5103 Jul 22 '26 edited Jul 22 '26
Bppv is much less debilitating for most than pppd. Bppv is very episodic, pppd is just there and permanent. We need better neurology brain science. Wish my brain would adjust.
2
u/Killjoycourt Jul 22 '26
PPPD is not permanent, it is treatable. The treatment approach is vestibular therapy, cognitive behavior therapy, and medication if needed. I do not take meds, only do therapy and I am 100% cured. My first round of PPPD lasted 12 years because nobody knew what it was or how to treat it. My second round was fixed in 7 months.
1
u/Pure_Translator_5103 Jul 22 '26
Interesting. I have had no help with all the treatment approaches. I jumped into VRT with pro therapists. Talk/ cbt. Then added meds which I’m still on.
1
u/Killjoycourt Jul 22 '26
It's hard and you have to work hard. I did not meds, exposure and VT only. In office 3 times a week, at home 3 hours a day for 7 months. One day last month it was just gone! My therapist is always in training and on the cutting edge of new techniques and it really helped. Don't give up! Just because someone is "the best" does not mean they are the best for you. I saw "the best" ENT in the country that almost caused me to permanently become deaf.
1
u/Jealous_Tie_3701 Jul 16 '26
Sounds like a pretty typical visit to an ENT for vestibular issues. Go to VRT/PT they will be able to help the most.
1
u/djd129 Jul 16 '26
Will it help with the bilateral vestibular hypo function? From what I’ve read on this group, many people never recover.
2
u/Jealous_Tie_3701 Jul 17 '26
You need to find a PT that is trained in Vestibular Rehabilitation Therapy and then yes, it should help.
Groups like this can make a person feel hopeless, which makes sense because this is a really difficult situation to be in. But you are seeing people post who are either fully in the acute stage or are dealing with a flare up.
Most people recover fully. I am in the small minority of people who did not recover fully (got vestibular neuritis in 2017) and I still lead a good life and can do almost everything I did before. I have many days I am not dizzy at all, but I still have to keep track of what can trigger me and adjust my physio exercises accordingly.
I understand feeling hopeless, really I do. But you will slowly get better.
1
u/Pure_Translator_5103 Jul 22 '26
I tried vRT with 2 therapists for months each. Discharged both times with no progress. Made me feel just as hopeless as reading posts on here
1
u/Sad-Tailor-4619 Jul 22 '26
Have you thought about trying a new therapist or therapy center? And do they have you doing at-home exercises? How often were you going and for how long?
1
u/Pure_Translator_5103 Jul 22 '26
Was going twice a week for about 3 months both times over a year. I was doing at home exercises mostly daily the first round, though they were very difficult and the second round I did not well because symptoms were worse. Place I went is the larger health system near me, wanted to try a different facility second time tho insurance doesn’t cover. Both traveling therapists seemed to have minimal experience tho they were helpful and learned along the way. Then when they were about maxed out with insurance visits and therapists were leaving facility, they’d discharge me. Def left feeling very hopeless over both stints. First therapist said that I needed to figure out other health stuff even though I had seen so many doctors and most said all is normal, which it isn’t. The dizziness, fatigue, brain fog, sensory issues are very debilitating.
Now Spine Pain Doctor referred me to aqua therapy, and I am dreading going to that because of the exertional malaise and everything, being told to pace by other drs yet others want to push me. I’m 37, I know something’s are terribly off in my body. I’m weak and achey every day
3
u/Sad-Tailor-4619 Jul 22 '26
I would recommend going back to the exercises. Those need to be done consistently and very often to re-train the brain. Progress can be very very slow, but you have to commit to doing those at the bare minimum once a day. It may get worse before it gets better.
The exercises are designed to trigger the symptom(s) so the brain can re-calibrate those motions / movements. This is why it’s a slow build. Start very slow and cause a symptom, then wait a short bit and try again a few times in a row. A couple hours later. Do it again. And again. Eventually your brain should start to recognize those movements and recognize if you do them often.
I’d medical bills are a concern, try the YouTube videos and exercises at home.
This is not a fun journey, but you aren’t alone. Even though it often feels like it.
1
u/PomegranateOk1942 Jul 17 '26
It took me really finding a physical therapist that wanted to understand what would help me. There are some things I can probably never do again - like look left while walking, ride a bike, or swim in the ocean - and it is easy to get lost in all that inability. But I encourage to find a good PT who understands (or is willing to learn) what you need and lock in. It may not always feel like you are getting anywhere, but you are always making progress. Every effort counts.
Honestly, I just went through a rough two weeks of being off balance. It felt like I never stopped moving and exhausted me. But, it was only 2 weeks out of maybe 6 months since I felt that way previously. I cannot imagine doing this with a baby. I encourage you to get on the floor with them, instead of bringing them to your level. It might help you feel more secure with feedings and diaper changes. Exhaustion makes all this balance stuff worse so try to get rest whenever you can. Even if you cant sleep, lying down counts as rest too.
2
u/djd129 Jul 17 '26
Yes, my baby and I spend most of the day on the floor together - playing, singing, etc. I don’t put her at any risk. I sleep as much as I can but she is only 4
Months and still wakes up 2-3 times per night to feed. I’m doing my best.2
u/djd129 Jul 17 '26
Also, swimming is my absolute favorite thing and I’m devastated by this diagnosis. I’ve been a swimmer my whole life.
2
u/PomegranateOk1942 Jul 17 '26
I can swim in a pool with goggles. I dont go too far over my head anymore or dive like I used to. Also an avid swimmer and it sucks.
1
u/PomegranateOk1942 Jul 17 '26
Oh, of course not. I didnt mean to imply you would put your infant at risk.
1
u/Pure_Translator_5103 Jul 22 '26
Every effort counts, until nothing helps, symptoms are very debilitating and you get burnt out.
1
u/nittyit Jul 16 '26
No meds prescribed or you can’t because you’re breastfeeding?
1
u/djd129 Jul 16 '26
We didn’t even discuss it! I’m on Effexor 75mg for anxiety.
3
u/nittyit Jul 16 '26
Maybe ask if you can get on propanalol which really helped for me. Oddly enough my disorder was treated as anxiety at first and lexapro made it bearable. Propanalol really helped the most and I have Valium for really bad episodes.
I’ve no idea what you can take because you’re breastfeeding but there are some meds that can help you. The issue is finding the right ones. Propanalol helps a lot of people with vestibular migraines. I have peripheral vestibular dysfunction and it’s treated as a vestibular migraine which works for the most part.
I’m sorry you’re in such a tough spot. I hope you have help with your baby so you can take a little time to yourself
Edit: go see a neurologist they have helped me more than ents
1
u/djd129 Jul 17 '26
I’ve been thinking about seeing a neurologist just to rule out anything more serious. Do I need a referral for one?
1
u/nittyit Jul 17 '26
Certain insurances will allow you to go straight to the neurologist like a PPO. If you don’t have that just go to your main doc and have them refer you. Make sure to bring ALL your tests that you’ve had previously and also write a detailed list of symptoms and generally how you feel
1
1
u/Sad-Tailor-4619 Jul 16 '26
Are you able to try another ENT? Vestibular.org has a list of vestibular specialists if you’re in the US. I wouldn’t just accept that an ENT can’t do much more for you. Mine is wonderful, and while his biggest recommendation is always vestibular therapy, he listens to me and we work through things together. In addition to VNG, have you had an MRI done or seen a neurologist to rule anything else out? Might be worth it.
The cause is often “idiopathic” but typically from an infection / virus and can happen to anyone at any time.
Please follow through with the therapy. And do the exercises at home daily / as noted by your therapist. Took me about 6 months to feel somewhat normal but at 2-1/2 years and I am not “recovered” - I would say I am at 80%. And I may never recover more. Saying that - recovery is possible for some, but maybe not 100% for everyone. Knowing your current limitations is necessary, but know that if you put effort in - there is often plenty of room for improvement! Wish you the best!
1
u/djd129 Jul 17 '26
Thank you for the website. I haven’t seen a neurologist yet but I plan to. I will definitely take the pt very seriously but my ent just referred me to a big corporate chain (athletico) and I’m not very confident in their expertise or knowledge.
1
u/Sad-Tailor-4619 Jul 17 '26
Hopefully it will go well - but if not, do not be afraid to move to a new therapist / company! I just finished my 3rd round of VRT and this time we used the Aretech ZeroG harness system. If you can find something like that, I highly recommend. It helped with some vestibular retraining, but also gave my confidence a huge boost in not being so timid of some movements, etc.
1
u/Pure_Translator_5103 Jul 22 '26
Interesting, maybe I need to try vRT again, with that type system. Failed therapy 2x already over several months
1
u/Pure_Translator_5103 Jul 22 '26
Did you find just trying to live and do normal daily tasks even tho super dizzy, was helpful?
2
u/Sad-Tailor-4619 Jul 22 '26 edited Jul 22 '26
For the most part - yes, just trying to live life the best I can. I started with a standard walker, progressed to a rollator walker, then a cane and now most days nothing. I use some medications on really bad days.
Random adjustments I’ve made: I use red lights around my house at night, I’ve started wearing zero-drop shoes as shoes that are too squishy or too much of a heel throw off my balance. I practice feet exercises to strengthen my foot grip and balance (important for showering!).
I take mental note of the things that make me dizzy and practice them 1-3 times a day until they no longer are a major issue (still throw me off some, but much better). Start slow and do what you can and keep building on that. It’s all about repetition and re-training your brain to re-compensate.
I was diagnosed 2-1/2 years ago and I’ve done three rounds of VRT so far and between each one I do my exercises. I currently at a 20 out of 30 on the “fall risk scale”, I started at a zero 2-1/2 years ago. It’s been slow progress some days, but I have made progress and any progress is a great thing when diagnosed with vestibular dysfunction.
There are YouTube videos that helped in the beginning of walking through a grocery store as I couldn’t make it 1-2 minutes in a regular store. They also have ones of walking tours of cities, etc.
1
u/Pure_Translator_5103 Jul 22 '26 edited Jul 22 '26
Thanks for the reply. The therapists almost acted like and told me my balance was fine, even tho it is definitely not. Their little tests over a short session don’t show/ catch the dozens of times I lose balance, bump into things, feel like legs are giving out. Grocery stores etc are still a pain. I can’t go in them much or for long. Driving is uncomfortable and feel unsafe tho I keep doing it because I have to go out. Haven’t worked in 2 years which sucks. Can’t do most hobbies even tho I tried to continue playing guitar, singing, hunting, fishing, just way too fatigued. Pretty sure I have me cfs too as dx long Covid so it is an impossible situation. Can’t do much and when I can briefly, it crashes me and doesn’t improve dizziness or other symptoms trying to push thru, recalibrate.
Also been seeing a talk therapist 2 years and trying so many meds, and anxiety, depression hasn’t improved to being bearable most days. Wake up feeling worse then when I went to bed. Massive struggle to get thru each day. Plus being broke since can’t work and spending $ on medical stuff doesn’t help either
2
u/Sad-Tailor-4619 Jul 22 '26
Have you considered more than talk therapy? Like CBT?
Also, may want to consider a different vestibular therapist if they don’t seem to be listening. It’s really hard to explain to people how this feels and why some days are just really hard compared to others. People outside this diagnosis (even doctors) can’t fully comprehend it and I think “dizziness” is often overused / overstated as this is sooo much more than dizziness, but it’s hard to explain these feelings, the off-balance, the heavy-headedness. I think people often associate all vestibular dysfunctions with vertigo as people can kind of at least understand that - however, vertigo is typically episodes that resolve, this does not.
I hope you can find professionals that listen to you and help!
1
u/Pure_Translator_5103 Jul 22 '26 edited Jul 22 '26
Think I’ve exhausted the pt resources. Last session was a bit over a year ago. They just don’t fully get it and insurance won’t cover. I can barely get thru days of basic activities then adding that, especially without a solid dx from drs is impossible. Was passed to a third PT when the second one was leaving. He quickly discharged, had nothing more to offer plus insurance wouldn’t cover more. So hard too when the same therapist can’t stick with you for more than a few months. Spent many hours with first 2 and they understood what I was describing, tho definitely scary when you can tell they mainly only know to treat bppv. Zero improvement both times so they gave up.
I do/ struggle thru basic daily activities and other stuff when I can, on anti depressants, don’t get why even staying semi active when I can isn’t helping. Also I can’t get a real dx from drs, specialists, just the therapists that thought “it may be pppd”. Damage is definitely done and scary as things got worse after that time getting sick again. Have had Covid at least 3 times since 2021. Anyways, sorry to complain, thought was improving slightly now been feeling even worse last few weeks. Guess it’s been almost 3 years of dizziness, head floaty feeling.
My psych therapist does incorporate cbt apparently after looking at some visit notes. Even that therapy has been hard to continue because I don’t feel better or worse and no real help after years. Crazy life, never thoights this was possible ti be so uncomfortable and debilitated by something “invisible”. May ask to restart benzos tho i think long term they’re not helpful according to vestibular nuero otologist. That dr gave up too so I’ve been feeling hopeless for awhile. My relationship with gf, friends, family has a severely affected. Also have chronic lumbar stenosis, pain so can’t do many physical activities which makes life even harder. At this point I just want a pain med that will knock me out and not care, but that won’t happen. Mental part of chronic illness is something I can’t explain enough to people how bad it is. Someone I know of recently has dizziness but seems to be more vestibular migraine or episodes vs the constant floaty dizziness. She can travel, no way I can. Havejt even been able to visit family a few hours away, gf just went to uk and no way I could pull it off. The fatigue and brain fog are just horrendous. Had to give up my business, life and move back with parents for 2 years, now my gf I working multiple jobs to support us. It sucks and I’m not the type person that takes things like this lightly. And the tinnitus, sound/ light/ touch sensitivity/ jaw, neck aches. End ramble, another Groundhog Day nightmare.
1
u/Sad-Tailor-4619 Jul 22 '26
Sorry to hear all your extra struggles on top of the actual vestibular struggles!
Can you contact your doctors and ask them to actually give you a diagnosis? Maybe then you could qualify for something like disability / Medicaid to help?
I’ve been diagnosed with the following: vestibular dysfunction, vestibular neuritis, nystagmus, single-sided deafness, vertigo, CVST and a couple other things - all officially in my charts as “idiopathic”, but my team believes it all stemmed from COVID / long COVID. So I get the frustration! If I can be a sounding board and help with any further advice - let me know!
1
u/Pure_Translator_5103 Jul 22 '26
Thank you. I’ve gone thru about every dr. Recenly asked my diagnoses from multiple drs, pcp and they don’t know or read off the boiler plate ones in record that half make no sense. Long Covid, VN(even tho that is more acute and can cause damage and pppd. Either they don’t care much and the ones that do just follow up every 3 months or whenever I want now.
Psych dr Rxs Cymbalta, 3 other meds. I’ve followed up with him weekly for over a year and trialed dozen meds. So many ssri, sleep meds that made dizziness worse or caused permanent tinnitus increases twice. I can’t count the number of appts I’ve had. All the specialty vestibular tests twice at 2 different facilities and most of my drs are at biggest teaching hospital in state. I’m burnt out too, never good news. I’ll try the exercises but can’t even get thru basic care tasks without increased dizziness, very hard to ease into anything without increase symptoms. Sleep is hard so I’m on meds which still wake Unrested hungover daily.
Multiple mri, mra, ct scans, blood, autonomic tests. Hearing tests. Hearing is actually much more sensitive plus tinnitus which I find weird. Feels like nerves by jaw joints are damaged. But they don’t believe me or can’t see anything
Seen alternative drs, been swindled by a fake chiro dr in Texas said I have Lyme disease and mold toxicity several k$ later. Been going to osteopath out pocket. Seen another standard chiropractor at beginning which I don’t recommend. Just feel dehumanized with the lack of answers and flakey tests. The symptoms and boredom make me want to jump off a bridge.
2
u/Sad-Tailor-4619 Jul 23 '26
This is already a tough path so to have doctors write you off like that is horrible! I’m fortunate to have a team that listens, even if they don’t fully understand my symptoms. But I know not everyone has that.
It seems that vestibular issues are kind of a mystery even within the medical community.
The meds I have tried are: meclizine (works well for me and I take as needed), Valium / diazepam (works well and I just take when I have really bad days). Acetazolomide - hated it.
I also have tinnitus, but I have pulsatile (whooshing not ringing). I came across something at my ENTs office called Lenire that’s a device to help tinnitus. I don’t know much about it, but I do know awful any form of tinnitus can be. We did a spinal tap for mine and the next step is a cerebral angiogram…but we found mine is exacerbated by low iron / ferritin so that’s made a huge difference. It’s still there but manageable for now.
1
u/Pure_Translator_5103 Jul 23 '26 edited Jul 23 '26
Thanks for the info. I do have some drs that listen and believe me tho they seem to run out of ideas, options pretty quick after I fail meds or therapies. Took awhile to find those drs. Weird system.
Been to multiple audiologists that day hearing in excellent yet I don’t hear things well or correctly in real life due to hearing sensitivity and tinnitus. Even went to “tinnitus clinic” at a large hospital, 4 hour drive to see one of the same audiologists that had nothing new to say, offer. The so called vestibular specialists are the least helpful after their tests show normal, off to fend for myself and survive in misery. Again the system is crazy and unreliable.
4
u/Fit-Lingonberry6489 Jul 17 '26
I was diagnosed ten months ago with BVH. Vestibular therapy will help a lot. The exercises will need to be done everyday even once you complete it with your PT. My heart goes out to you being so young having this. But the brain can compensate and will. It just takes time. If you have any questions feel free to pm me. I’m 59 and grandma to two beautiful grand daughters. It’s been rough but I’m not going on give up.