Author Topic: otolith dysfunction  (Read 7777 times)

Patrick

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otolith dysfunction
« on: Jun 11 2006, 10:21 AM »
::) Hi everyone I'm new doing this on forums so please be a bit patient, I joined the MD not because I have got MD but have been dizzy and very unstable for 26 years now, I have recently returned to the Royal London Hospital and after tests they tell me I am suffering with Chronic otolith dysfunction I to suffer with lack of confidence going out and suffer severe dizziness every day, it does get you down at times but you just have to try and go forward. my question is there anybody out there that can tell me more about this illness I also get attacks without warning day or night, I have found the spin magazine very helpful and to read about others on this site and the spin let me know i'm am not alone thank you all very much for listening
regards
Patrick

Offline jon

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Re: otolith dysfunction
« Reply #1 on: Jun 13 2006, 04:37 PM »
Hi Patrick,
i've not heard of chronic otolithic dysfunction before, not on its own anyway. But it's a part of meniere's disease.
Do you know the cause, or possible causes? Any deafness?

From what I remember the otolith is the part of the balance organ that monitors non-rotational movements, up and down, front to back and side to side. But maybe the semicircular canals are also part of it. If you're getting the spins then, they must be affected as well.

Do you get Drop attacks at all?

Jon
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Patrick

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Re: otolith dysfunction
« Reply #2 on: Jun 17 2006, 11:57 AM »
Hi ya Jon,
Thanks for your reply, I started of in 1980 with a very bad viral infection which resulted in chronic vestibular neronitis, I carried on working the best I could but was suffering terrible balance problems, I was under the Royal ear nose and throat hospital in London, I had many sessions of shysio, but nothing really helped the balance problem, so I have been jogging along since then, these episodes of vertigo would come on without warning, just when I was sitting in a chair I would get the feeling that I was spinning down into the ground, then apart from getting these vertigo attacks I started getting dizziness when ever I moved about turning in bed bending down coughing or sneezing that lasted for 15 seconds but violent enough to have to hold on to something, 5 years ago I asked my GP to refer me to the hospital which he did the doctor I saw at the hospital was an ear surgeon at my local hospital who new little about balance problems, and when I told him how I felt honestly he shrugged his shoulders very frustrating as you can imagine, I have since seen two other doctors at the hospital for about 10 minutes each who had equal knowledge of the problem, I asked them if I could go to the London Hospital, they done all the tests and told me that my vestibular system is not working all my balance is done by sight, this is why I have such terrible problems in the dark, I don't travel at all now as when I go in a car as soon as the car starts off or stops I get this terrible dizziness and nausea, I do not get drop attacks, but I have constant tinnitus and inerminteint deafness in the left ear every daywhich last from 10 minutes to all day, the London Hospital gave me many exercises to do at home but despite try to do them they make me very dizzy and nauseas, so the London told me not to do them anymore, so I remain here having spell of dizziness when moving around to much, and spells of dizziness which come on spontaneously without warning, I get very frustrated how I fill I am 54 years old I take stemitil tablets but not all the time, they only suppress the sickness but do nothing for the dizziness.
I hope I have not gone on to much, but I do get great comfort from the site and the spin magazine, because as you know this can be very isolating
Kind Regards
Patrick

Offline Elaine

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Re: otolith dysfunction
« Reply #3 on: Jun 17 2006, 01:26 PM »
Hi Patrick ,
I'd  never heard the term otolith dusfunction before so you got me curious .I did a search and found the following article:

http://www.egms.de/en/journals/cto/2005-4/cto000011.shtml

It's a long article but as you will see it suggests various causes for otolith dysfunction including Menieres Disease .
It sounds as though your first ENT used this term in a blanket sort of way rather than carrying out the necessary balance tests and MRIs to determine the cause of it .It's not uncommon for some ENTs who know little about these things to do this .BY giving you a technical term you were given the impression you had a diagnosis when in fact all the ENT was saying was that you had a balance disorder but that he didn't know which one !
My suggestion to you would be to find yourself a good ENT who specialises in balance disorders (there is always the Leicester balance centre who are excellent  if you could brave the journey ) .It is possible that some people do have a disorder that never full gets diagnosed but at least you might get some help with your symptoms .
Hope this helps ,
Elaine xx

Patrick

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Re: otolith dysfunction
« Reply #4 on: Jun 17 2006, 02:14 PM »
Elaine,
Thank very much for that web site , I have saved it on my computer and read it at my leasure, it nice to know I will be able to find out more, I was starting to bang my head against the wall, the doctors I have seen have really been disappointing in there attitude to my problem,
once again thank you very much
Kind regards
Patrick

Offline Christina

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Re: otolith dysfunction
« Reply #5 on: Jun 17 2006, 03:48 PM »
Hi Patrick
It sounds as if you've had a v. frustrating time with your specialists.  This is quite a common experience - trying to get a diagnosis or a name attached to whatever is going on is something many of us have struggled with for many years.  Like you, I was told my problem was neuronitis or labyrinthitis then after the problems continued for many months, MD was mentioned as a possibility.  Now I'm told it's atypical MD - because I haven't developed a hearing loss although I have persistent daily dizziness/vertigo and tinnitus.  I believe there is considerable damage to my balance system and like you I rely heavily on my eyes to tell my brain what's happening.  That in itself causes problems as you've no doubt experienced.  To have perfect balance, sight, ears and proprioceptors in legs, back and neck must work together.  If one isn't working properly we have the other two to back us up but of course it's not the same and we get mixed messages to the brain.  Abnormal eye movements cause dizziness in themselves too.  Not surprising then, you have problems with your balance.  All that said, there are specialists in balance disorders, as Elaine mentioned.  You may have to pay privately to see one  in a different part of the country and I am sure the MD society would be able to give you some names and contact nos.
Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Offline Elaine

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Re: otolith dysfunction
« Reply #6 on: Jun 17 2006, 06:01 PM »
You're welcome Patrick .Glad I could help ! It's an interesting read but a long one - btw don't print it off it goes on for something like 80 pages because of the wide gaps at either side of the pages LOL!
At least the article will be a start to helping you work out what's going on .YOu might want to read some of the Meniere's websites .The following one is great :

http://www.dizziness-and-balance.com

Hope this helps ,
Elaine xx