Hi, a few years ago, i was diagnosed with bilateral vestibular hypofunction, oddly enough i don't feel like I'm going to fall over i just feel awful alot of the time, i have tried vrt for months at a time but i don't find it effective. Things like computer screens and smartphones make me unwell and really exacerbate my symptoms, I'm not sure how to improve my situation. I do alot of walking and i am not unfit. My ears constantly ring and i feel nauseous, i also feel pressure in my head and my neck feels tight. I was initially told i had labrynitis but that was many years ago and it seems to have developed into vestibular loss.
I’ve been diagnosed with bilateral vestibular loss, pppd and visual vertigo. Started vrt but worried I’m wasting my time.. No improvement as yet but still early days so we’ll see. I sympathise and totally understand what you’re going through, it’s horrible. I was told by the audiologist that it’s going to be hard to treat. I also have ME/CFS, central sensitivity, insomnia and noise sensitivity. I feel like this is going to be me for the rest of my life. I’m trying to stay positive but it’s really hard. Hope you find some relief.. ❤
i have Superior oblique eye palsy and Vestibular weakness 40%, too much anxiety and disorientation icant function like i use to. Things that automatic to me before now very complicated Its hard to explain how i feel since my disorder cant be seen. Im slowly dying inside most of the time i just to stop living
Thank you for this video. 🙏I’m at the beginning of this terrible journey. I had a laprascopic appendectomy 5 weeks ago and was given 6 bags of iv gentomycin antibiotics over 24 hours and full anaesthetic. 10 days after release from hospital I started to get dizzy. Doctor suggested Betahistine tablets even though I wasn’t nauseous. I have oscilliopsia and dizziness. Balance issues walking on grass or uneven surfaces. I can’t make out faces or things in the distance, they seem to move about. Therefore I’m not able to drive. This has all happened quickly and is frightening. I found vt exercises on you tube but I would like to know if the exercises for bvh are the same as VN exercises. I’m doing the gaze stabilisation one particularly. Should I do them all. I’ve been to a vestibular Physio but I really didn’t get much from her except that she thinks it’s not vertigo. I have an mri booked for next week. I’m not taking any meds except my head feels full and heavy and I could do with something to clear it. I suppose that heaviness is all part of this “thing”. I wonder at times with a temple ache that it might be VM but there you go, who knows! I have had bppv in the past and aware of those feelings and I’ve always been able to do successful epley manoeuvres. So yes, I feel this has been brought about by antibiotic toxicity and just want to know which exercises to continue with. If you say all, that’s fine. However there might be specific ones for bvh which is what I think I may have. I’m in Australia in Adelaide and hoping to find someone better than the dizziness and balance place that I’ve already been to. I can try some local pt’s in my area. Mclaren Vale. Again thank you! I’m 69 (I know, old for appendicitis).
I'm so sorry to hear about this Jane, I'm having some similar issues after a similar antibiotic, have your symptoms improved /stabilised atall? I hope you are doing okay x
Hi Jane. Two years ago, I had surgery to remove my gallbladder. 10 days after leaving hospital, I started losing my balance. I'm a Rambler which means I walk in the countryside regularly with other Ramblers (I live in Surrey in S.E.England). After I came out of hospital, I discovered that, when I went out to walk, everything seemed to bounce up and down. My local doctor told it was probably BPPV and gave me sea sickness pills (which just made it worse) plus the Epley manoeuvre (which was a waste of time). I'm sure this all seems horribly familiar to you! It took me about 6 months before I discovered - on my own - that I was suffering from Oscillopsia and, eventually, Bilateral Vestibular Hypofunction caused , most likely, by Gentamicin antibiotics while I was in hospital . You seem to have discovered this much more quickly! For me, it's now been two and a half years since my surgery and the good news is that I am so much better. I couldn't drive - now I can. I couldn't do steps - now I can. I couldn't do uneven surfaces (like grass) - now I can. I couldn't do narrow paths - now I can. But it's much more than that. My Oscillopsia has gone. I feel much more confident about my balance. I'm not cured because I've been told that this condition is permanent but I am so much better. My vestibular specialist has been amazed by my progress and says that she believes a lot of that progress has been because I'm a Rambler - a walker. I initially did all the gaze stabilisation exercises I was given and I know that they helped but walking regularly has been the most effective way to deal with my BVH. I don't know what your situation is in Adelaide but, if you can find a way to walk regularly, I think it will really help you. My wife bought me two Pacer poles initially because they helped me to keep my balance when I went walking and also helped with my posture. After a while, I found that I didn't need them. At first, I wasn't confident to walk with a group because of my balance , but, eventually, I did. Bit by bit, things I had found really difficult became easier. I gave myself goals and I made a list of things I couldn't do and then I ticked them off when I realised that I could do them. It was quite a long list! I wish someone had told me earlier that walking would make so much difference. I should make it clear that it hasn't taken me two and a half years to get to where I am now. I started driving, for example, quite early on - short distances at first because it was tiring. Eventually, it was no longer a problem (even driving at night). I'm still improving with my overall balance. I hope this helps you. Good luck! John
Hi John, thank you for your reply and thoughts on this. It’s been just over a year now and although I’ve adapted with my balance (yes I found walking very helpful so I walk the golf course three times a week) - my golf hasn’t improved!! 😅 The oscillopsia is the killer, my head still feels full and it’s as if I’ve been drugged, yes, still. I’ve just started seeing another physio girl in McLaren vale who is giving me more exercises but to be honest, like you, I find walking is best as it’s pushing me to make some sense of my world. I still have difficulty recognising faces in the distance or walking down slopes and walking across narrow walk- ways between golf holes. At 69 before all this, I felt still young and busy but now at 70 just one year later living with this ‘thing’ I am starting to feel old!! I had all the tests plus mri so no central damage just the hair cells burned out and gone courtesy of gentamicin. Nasty stuff. It’s a cheap antibiotic and that’s why they use it even when it’s not recommended for my age group and unless it’s a gram negative bacteria. They didn’t warn me about its side effects which I think is reprehensible. I’m so glad to hear your recovery is almost complete and that the rambling has helped. I’ve been told too that’s there’s nothing the medical profession can do. I’ll keep golfing for as long as possible. I just need someone to watch my ball as I can’t swing and then look up 😅 I’ve kept my sense of humour thank God. I’ll hope that in another six to twelve months I might be in your same position of better ‘being’. I really appreciate your comments as sometimes it’s as if I’m the only one it’s happened to. I’ve been fortunate to contact “wobbler’s anonymous “ a face book group of people in the same boat. All the very best for the continuing journey you’re on. By the way I was originally from Brighton in Sussex before emigrating to Australia. 😊@@johnpeppardathome3831
@@Somo-wg1es thank you for replying. My reply to the next comment is more complete. I’m still struggling with oscillopsia, feeling like I’m drugged. The fact that I’ve had to follow it up on my own without any positive help from the medicos is terrible. Google has given me more information than any doctor. Doctors use gentamicin and other aminoglycoside antibiotics too recklessly when they are unnecessary in a lot of cases. I didn’t need it and I feel after a year and a bit that it ruined my life. Young 69 year old became an old 70. I’d love to know who prescribed it at the hospital and give him some just so he can see the damage it causes without any benefit. That’s my rant for today. Again thank you for your comment and as John says below, keep walking. 🚶
Hi, a few years ago, i was diagnosed with bilateral vestibular hypofunction, oddly enough i don't feel like I'm going to fall over i just feel awful alot of the time, i have tried vrt for months at a time but i don't find it effective. Things like computer screens and smartphones make me unwell and really exacerbate my symptoms, I'm not sure how to improve my situation. I do alot of walking and i am not unfit. My ears constantly ring and i feel nauseous, i also feel pressure in my head and my neck feels tight. I was initially told i had labrynitis but that was many years ago and it seems to have developed into vestibular loss.
Are you better ?
I’ve been diagnosed with bilateral vestibular loss, pppd and visual vertigo. Started vrt but worried I’m wasting my time.. No improvement as yet but still early days so we’ll see. I sympathise and totally understand what you’re going through, it’s horrible. I was told by the audiologist that it’s going to be hard to treat. I also have ME/CFS, central sensitivity, insomnia and noise sensitivity. I feel like this is going to be me for the rest of my life. I’m trying to stay positive but it’s really hard. Hope you find some relief.. ❤
i have Superior oblique eye palsy and Vestibular weakness 40%, too much anxiety and disorientation icant function like i use to. Things that automatic to me before now
very complicated
Its hard to explain how i feel since my disorder cant be seen. Im slowly dying inside most of the time i just to stop living
Thank you for this video. 🙏I’m at the beginning of this terrible journey. I had a laprascopic appendectomy 5 weeks ago and was given 6 bags of iv gentomycin antibiotics over 24 hours and full anaesthetic. 10 days after release from hospital I started to get dizzy. Doctor suggested Betahistine tablets even though I wasn’t nauseous. I have oscilliopsia and dizziness. Balance issues walking on grass or uneven surfaces. I can’t make out faces or things in the distance, they seem to move about. Therefore I’m not able to drive. This has all happened quickly and is frightening. I found vt exercises on you tube but I would like to know if the exercises for bvh are the same as VN exercises. I’m doing the gaze stabilisation one particularly. Should I do them all.
I’ve been to a vestibular Physio but I really didn’t get much from her except that she thinks it’s not vertigo. I have an mri booked for next week.
I’m not taking any meds except my head feels full and heavy and I could do with something to clear it. I suppose that heaviness is all part of this “thing”. I wonder at times with a temple ache that it might be VM but there you go, who knows!
I have had bppv in the past and aware of those feelings and I’ve always been able to do successful epley manoeuvres.
So yes, I feel this has been brought about by antibiotic toxicity and just want to know which exercises to continue with. If you say all, that’s fine. However there might be specific ones for bvh which is what I think I may have. I’m in Australia in Adelaide and hoping to find someone better than the dizziness and balance place that I’ve already been to. I can try some local pt’s in my area. Mclaren Vale.
Again thank you! I’m 69 (I know, old for appendicitis).
I'm so sorry to hear about this Jane, I'm having some similar issues after a similar antibiotic, have your symptoms improved /stabilised atall? I hope you are doing okay x
Hi Jane. Two years ago, I had surgery to remove my gallbladder. 10 days after leaving hospital, I started losing my balance. I'm a Rambler which means I walk in the countryside regularly with other Ramblers (I live in Surrey in S.E.England). After I came out of hospital, I discovered that, when I went out to walk, everything seemed to bounce up and down. My local doctor told it was probably BPPV and gave me sea sickness pills (which just made it worse) plus the Epley manoeuvre (which was a waste of time). I'm sure this all seems horribly familiar to you! It took me about 6 months before I discovered - on my own - that I was suffering from Oscillopsia and, eventually, Bilateral Vestibular Hypofunction caused , most likely, by Gentamicin antibiotics while I was in hospital . You seem to have discovered this much more quickly!
For me, it's now been two and a half years since my surgery and the good news is that I am so much better. I couldn't drive - now I can. I couldn't do steps - now I can. I couldn't do uneven surfaces (like grass) - now I can. I couldn't do narrow paths - now I can. But it's much more than that. My Oscillopsia has gone. I feel much more confident about my balance. I'm not cured because I've been told that this condition is permanent but I am so much better. My vestibular specialist has been amazed by my progress and says that she believes a lot of that progress has been because I'm a Rambler - a walker. I initially did all the gaze stabilisation exercises I was given and I know that they helped but walking regularly has been the most effective way to deal with my BVH. I don't know what your situation is in Adelaide but, if you can find a way to walk regularly, I think it will really help you. My wife bought me two Pacer poles initially because they helped me to keep my balance when I went walking and also helped with my posture. After a while, I found that I didn't need them. At first, I wasn't confident to walk with a group because of my balance , but, eventually, I did. Bit by bit, things I had found really difficult became easier. I gave myself goals and I made a list of things I couldn't do and then I ticked them off when I realised that I could do them. It was quite a long list! I wish someone had told me earlier that walking would make so much difference. I should make it clear that it hasn't taken me two and a half years to get to where I am now. I started driving, for example, quite early on - short distances at first because it was tiring. Eventually, it was no longer a problem (even driving at night). I'm still improving with my overall balance.
I hope this helps you. Good luck! John
Hi John, thank you for your reply and thoughts on this. It’s been just over a year now and although I’ve adapted with my balance (yes I found walking very helpful so I walk the golf course three times a week) - my golf hasn’t improved!! 😅
The oscillopsia is the killer, my head still feels full and it’s as if I’ve been drugged, yes, still.
I’ve just started seeing another physio girl in McLaren vale who is giving me more exercises but to be honest, like you, I find walking is best as it’s pushing me to make some sense of my world. I still have difficulty recognising faces in the distance or walking down slopes and walking across narrow walk- ways between golf holes.
At 69 before all this, I felt still young and busy but now at 70 just one year later living with this ‘thing’ I am starting to feel old!! I had all the tests plus mri so no central damage just the hair cells burned out and gone courtesy of gentamicin. Nasty stuff. It’s a cheap antibiotic and that’s why they use it even when it’s not recommended for my age group and unless it’s a gram negative bacteria. They didn’t warn me about its side effects which I think is reprehensible.
I’m so glad to hear your recovery is almost complete and that the rambling has helped. I’ve been told too that’s there’s nothing the medical profession can do. I’ll keep golfing for as long as possible. I just need someone to watch my ball as I can’t swing and then look up 😅
I’ve kept my sense of humour thank God. I’ll hope that in another six to twelve months I might be in your same position of better ‘being’. I really appreciate your comments as sometimes it’s as if I’m the only one it’s happened to. I’ve been fortunate to contact “wobbler’s anonymous “ a face book group of people in the same boat. All the very best for the continuing journey you’re on. By the way I was originally from Brighton in Sussex before emigrating to Australia. 😊@@johnpeppardathome3831
@@Somo-wg1es thank you for replying. My reply to the next comment is more complete. I’m still struggling with oscillopsia, feeling like I’m drugged. The fact that I’ve had to follow it up on my own without any positive help from the medicos is terrible. Google has given me more information than any doctor. Doctors use gentamicin and other aminoglycoside antibiotics too recklessly when they are unnecessary in a lot of cases. I didn’t need it and I feel after a year and a bit that it ruined my life. Young 69 year old became an old 70. I’d love to know who prescribed it at the hospital and give him some just so he can see the damage it causes without any benefit.
That’s my rant for today. Again thank you for your comment and as John says below, keep walking. 🚶
Are you a vestibular physical therapist?
Yes!