Any Ideas or suggestions?

thanks for mentioning vestibulopathy.  Like Steve I started with BBPV and then just went on to have general vision and imbalance problems.  I read on a research site after you mentioned vestibulopathy that 'For example, most people with moderate or severe loss never return to driving at night'.  I now have extreme difficulty driving at night and am starting to avoid doing so as i feel i am becoming a danger on the road  at night if the road is unlit.  Having read this it now makes sense as i thought it was down to needing some night driving glasses .  Thank you mentioning vesitibulopathy but is there anything that can be done about it? 

Hi Anne,

The balance specialist diagnosed me with bilateral vestibulopathy with oscillopsia which is a horrible eye bouncing on head movement. He said at least 2 thirds of my ears are effected, and the cause is unknown. I am due to see him again and vestibular rehab in January, but he said the aim is to retrain my brain as much as is possible, its not optimistic for a full recovery for me. Its impossible for me to walk anywhere at night, and have difficulty in the day with help, I am houebound really, unless someome can accompany me anywhere. I dont drive, but know if I did it would be impossible now. Sorry for the doom and gloom on Chritmas eve. X

Thanks Jan, I am grateful for your post because it has given me a better understanding of what is going on with me and makes sense.   I'm sorry to hear you housebound, did this happen gradually?  I find getting out of the car knocks my balance out, just dipping my head to avoid it hitting the frame etc., I have been quite off lately with pain in my shoulder and read on the site for this condition that the anti inflammatories i take could also be worsening my balance as also affect the ears. Bit of a duff hand to be in pain, find a pain relief that works and then find it worsens this condition but such is life.

I wish you a happy Christmas even so and hope for the future they can find something to help.  Kind regards Anne. 

 

Jan,

I believe that many of our symptoms, posters on the forum, mirror many possible issues, conditions, of the inner ear.  The bouncy vision, oscillopsia, is definitely troubling.  I went through 3 months of VRT and saw some improvement with the visual issues.  I still have a bouncy feeling at times and especially when in a large store or busy environment.  It has improved greatly from what it began as so I definitely would recommend to anyone to do the VRT.  I still perform the VRTexercises at home.  My neurologist indicated that down the road he could prescribe something to further improve the issue, bouncy feeling.  I can now also manuever at night as I believe that my brain has slowly adapted to the mixed signals between my inner ears and eyes.  You are right on as well on your recommendation for seeking a neuro-otologist for treatment.  I saw 4 ENTs that their advice was to learn to live with it.  I have seen steady improvement from my course of treatment but, most of what I have seen has been things that I did from research on the internet and forum discussions such as this.  It is a great resource to have those of us that are making our way through this to be able to offer advice and some positive re-inforcement to others that have just began this journey.  It is a nightmare to have to do it on your own and especially when you don't know if the symptoms will ever end.  My best advice to anyone beginning this journey is to have all of the necessasry tests to rule out the really bad issues, seek out a Neuro-otologist and get into a VRT program.  Since so many issues with the inner ear have many of the same symptoms it is important to ensure that you get a diagnosis from someone that has a clue as to what is going on with your inner ear.  An ENT certainly cannot.

Wishing all the best to everyone suffering with this horrid condition.

Terry  

A happy Christmas to you too anne. i have found getting ready for Christmas exausting to be honest, trying to keep things as normal as possible.

My balance has worsened over the last year, so yes gradulally. the consultant said it will reach a level but everyone is different to what that level is. I find if i have a cold however mild it effects me and Im slightly worse afterwards. strange you should mention shoulder pain, I have a frozen shoulder also!

Anyway lets hope for a better year in 2015 x

Hi Terry,

Thank you for that extensive reply. You are right this forum is a great support and assurance that we are not on our own with this even though it feels like it sometimes. My consultant neuro-otologist said he sees thousands of patients a year and on average only 2 a year with bilateral vestiulopathy.

I find the most the oscillopathy to be the most disressing symptom, and not being able to walk unaided is really awfull. I do worry what the future holds, as certainly my life as I knew it has come to a complete holt.

thank you for your support Jan

I whole heartedly agree with you Terry. I spent the first few years of this battling on. My own with gps, ents , being bounced back and forth  I wish I had pushed for the Neuro Otologist much sooner, as the time in between appointments at ENT wasted so much valuabl time.  also run,of te mill VRT which did. Nothing.  I am sincerely hoping his new hospital,s regime is better. I hve been. Told they have their ,own,  vrt is different!!   Sorry, is page is going slowly, always does at night for some reason

Would certainly love to know any new VRT methodology.  I am in the States and there is a new VRT technology associated with virtual reality.  Not available in most places but, hopefully something that will expand.  After VRT I believe that there is still an issue with time and the nerves settling down and our brains compensating.  The UK seems to be ahead of where we are in treating this disorder.  One post that I saw a couple of weeks ago mentioned Ecospirin from an old practicing GP being prescribed for one poster.  I have begun a low dose of aspirin in hopes that it may offer some effect as well.  I do find that weather fronts deal me misery for a few days until they pass.  Also, one thing that my neuro-otologist is mentioning is Intratympanic profusion.  They inject a steriod into the middle ear so that it absorbs more easily into the inner ear to reduce inflamation and fluid.  Not sure that I am ready for that though.  I have no vertigo issues and mainly deal with bouncy head and a spatial feeling some days.  In the beginning I thought that I was literally going crazy.  It's sad as most people have posted taht most GPs and ENTs want to write it off as anxiety related, without realizing that it is the condition that causes the anxiety not the opposite.