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DrChip
 #21 

Quote:
Originally Posted by toma5
So much attention I'm getting from you Dr Chip, I almost feel important again (joking!!!).
When you said "my questions to you as a patient", do you actually mean that you would be interested to know more precisely about my symptoms, or did you mean that I should get asked all of that by my ENT?
Of course, I would love answering those questions, as nobody ever really bothered asking me any, if it could bring me closer to understand. I think probably it is the fact that I still don't know what is happening with my ear (and my ENT told me that she can't give me any prognosis for my hearing loss) that stops me from finding any closure and therefore, not accessing the path to recovery.
But Dr Chip, if you are willing to hear my answers just let me know.
Thank you again.


This is from my routine questionaire: feel free to answer  the questions on the forum, or to me by PM/email.  I will be happy to help.

ps: please don't take off points for spelling!  cb
toma5
 #22 
Alright then! I'll try to make it a clear as possible.

do you have a ringing/roaring/cricket like sound (tinnitus)?  I have 3 sounds: a low tone (fridge like), doesn't bother me much. A high-pitch whistling and the most annoying of all is the (what I call) white noise sound with the feeling that there is built up pressure in my ear (this sound is at 10 db).
left ear: yes and perfect right ear.

Do you have hearing loss?  yes. Sensoneural: around 15 db but especially conductive with an average of 25 db loss, although my low frequency loss has been measured as low as 60 db (I can't hear any heartbeat anymore when I put my ear on somebody's chest). The high frequency loss is around 30db.
 
Do you have vertigo/off balance/dizziness?  yes but not really when on Betahistine. 

what triggers the balance problems : rolling over: a bit  which direction?  always to the right. looking up? yes terribly.  standing up quickly?  sometimes. But usually it is the feeling that the floor is getting soft or that my chair on which I'm sitting is suddenly going down. Usually, it feels that suddenly the wall is attacking me or the table comes suddenly dangerously close to me. I don't actually feel that I'm going. I happened to sit down in bed and have the feeling that it was a water bed (which it is not).  I find it very difficult to squad, I have to hold myself.

do you have nausea with the episodes?  I always feel nauseous and I have been feeling like that for years. I feel very nauseous when somebody bounces a ball in front of me, or when somebody passes me by when I read. do you have vomiting with the episodes? No but I actually never vomit anyway.

do you have pressure/fullness in your ear(s)?  Oh yes!!!!! I have tried to unblock my ear until I almost tore the eardrum. 
Are you sensitive to light (photophobia): Yes but bright light has always given me migraines. 
do you have sensitivity to sound (phonophobia?): I hate noise I have to say and I could always hear sounds that most people couldn't hear.

Do the symptoms fluxuate: hearing loss/vertigo/tinnitus?  How long do the symptoms last? The vertigo (before betahistine) was usually during 3-6 days. The hearing loss seems to change a bit too but difficult to say. Tinnitus almost always bad but some days are nightmarish. Usually gets worse after lunch. I know that it sounds unreal but usually when I have vertigo my tinnitus is better and when my hearing loss seems better my tinnitus gets worse (????).

Other info I can give you: I had an ABR which showed some "post coclear damages not in relation to hearing loss". For the past 20 years I've suffered with a terrible eczema in the left ear. The only thing I know is that because of the conductive hearing loss, no ENT at this stage was happy to give me any definitive diagnosis.

So I you want to put your teeth into this and maybe come to some conclusion I'll be forever thankful to you.


DrChip
 #23 

Quote:
Originally Posted by toma5
Alright then! I'll try to make it a clear as possible.

do you have a ringing/roaring/cricket like sound (tinnitus)?  I have 3 sounds: a low tone (fridge like), doesn't bother me much. A high-pitch whistling and the most annoying of all is the (what I call) white noise sound with the feeling that there is built up pressure in my ear (this sound is at 10 db).
left ear: yes and perfect right ear.

Do you have hearing loss?  yes. Sensoneural: around 15 db but especially conductive with an average of 25 db loss, although my low frequency loss has been measured as low as 60 db (I can't hear any heartbeat anymore when I put my ear on somebody's chest). The high frequency loss is around 30db.

low frequency loss suggestive of Meniere's.  reason: A: no boney "shelf" in the lower pich area of the cochlea, so cochlear pressure effects to lower freq outer hair cells more


 
Do you have vertigo/off balance/dizziness?  yes but not really when on Betahistine. 

what triggers the balance problems : rolling over: a bit  which direction?  always to the right. looking up?
 yes terribly

A: suggestive of positional vertigo (BPPV)


standing up quickly?  sometimes. But usually it is the feeling that the floor is getting soft or that my chair on which I'm sitting is suddenly going down. Usually, it feels that suddenly the wall is attacking me or the table comes suddenly dangerously close to me. I don't actually feel that I'm going. I happened to sit down in bed and have the feeling that it was a water bed (which it is not).  I find it very difficult to squad, I have to hold myself.

A: NOT a positive sign for orthostatic hypotention: sudden blood pressure drop when standing .

do you have nausea with the episodes?  I always feel nauseous and I have been feeling like that for years. I feel very nauseous when somebody bounces a ball in front of me, or when somebody passes me by when I read. do you have vomiting with the episodes? No but I actually never vomit anyway.

do you have pressure/fullness in your ear(s)?  Oh yes!!!!! I have tried to unblock my ear until I almost tore the eardrum. 

A: aural pressure; VERY suggestive of Meniere's

Are you sensitive to light (photophobia): Yes but bright light has always given me migraines. 

A: positve sign for migraine vestibullar disorder

do you have sensitivity to sound (phonophobia?): I hate noise I have to say and I could always hear sounds that most people couldn't hear.

A: hyper acusis/misophonia,recruitment ( a Meniere's sign)

Do the symptoms fluxuate: hearing loss/vertigo/tinnitus?  How long do the symptoms last? The vertigo (before betahistine) was usually during 3-6 days. The hearing loss seems to change a bit too but difficult to say. Tinnitus almost always bad but some days are nightmarish. Usually gets worse after lunch. I know that it sounds unreal but usually when I have vertigo my tinnitus is better and when my hearing loss seems better my tinnitus gets worse (????).

A: hmmmmmmmmmm

Other info I can give you: I had an ABR which showed some "post coclear damages not in relation to hearing loss".
 
A:  ????????????
 
For the past 20 years I've suffered with a terrible eczema in the left ear. The only thing I know is that because of the conductive hearing loss, no ENT at this stage was happy to give me any definitive diagnosis.

So I you want to put your teeth into this and maybe come to some conclusion I'll be forever thankful to you.

 

A: overall impression: sounds very "Meniere's" like.
Did they ever do an ENG/VNG test?  electro cochleaography?  MRI?Other tests for balance/vestibular disorders?
 
As you can image: difficult to say for sure, particularly if further testing was not done.  This is not meant to be a diagnosis, Hope this helps.  cb




toma5
 #24 
Thank you very much Dr Chip, even if I actually didn't like the first impression you have. No, I didn't have any ENG/VNG. I had an MRI that was clear, no electro cochleaography. Yes, I always had problems with my blood pressure. I saw my GP this week and I was 100 and 60. Always feel exhausted! I'm supposed to see a consultant in another hospital next month. My GP is just not happy that I wasn't given any diagnosis (although I haven't seen the letters, and it could well be that all my symptoms were dismissed as being serious) and that I had to go to France to find a specialist willing to try different medications and willing to give me some sort of diagnosis. But it's probably just going to end up again as me going through an hearing test, which results will be atypical, and the consultant will decide that there is no ground for further investigation.
We'll see!!!
Thank you again and have a nice week-end!
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