Hi Meeshyell

I don't want to confuse matters by adding anything else to the mix but I have low frequency hearing loss and I have been diagnosed with MAV. According to my Neurotologist and Tom, low frequency hearing loss is a common symptom of MAV so it may be worth mentioning when you go to see the specialist.

Tom posted this link to illustrate this: http://www.ncbi.nlm.nih.gov/pubmed/2...y_RA&linkpos=1


Fudge

MEE, well what can i say ?
I think you will have to wait to see the other specialist , maybe you will get more luck there ?
It appears that most of the disorders can cause some hearing loss , no wonder your so confused.

I think I will join you for the scream and cry - bless you Mee xxx

Me too
It feels a bit like a 'scream and cry' sort of week. Mee, hopefully the other doctor will be better. Just go in there armed with your list of symptoms/questions and you'll be fine. You'll get your diagnosis eventually

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Thanks everyone , Fudge , is your hearing loss in both ears ?

What makes this the most confusing is its so possible I could fall into so many of the categories , If I look back on most of my life

At about 8 yrs old I had mono, and use to sing in choir at school, I would always get dizzy and black out ( many canker sores , so from what i know herpes virus (not genital lol ...)
since.... over the years I have always at one point or another felt lightheaded (almost passing out seeing stars) mostly standing in line ups etc.. or while havinig hands in warm water like when washing dishes

I also recieved allergy shots at a young age for about 5 years twice a week

Have also had my head physically slammed into the bumper of a car as well as banging it hard myeself last year on a car door

Use to get many headaches, some of wich I would need to go to the emergecncy and get shots to settle them down ! the last time this happened was last september 07 and I was given a shot of demerol ! (bad bad demerol ) but have had no migraines since

After I had baby #5 ,

about a year after, I became very sick with flu where I was quite dizzy , vomitting and was litterally carried into the clinic, shortly after that is when I noticed I was dizzier......
was sent to see ENT and Neurologist
tests done !
CT normal
the test with the warm water/cold water normal
the test where you watch flashing lights normal
the only test that was faled was the low frequency hearing ( I have not notice any change in hearing since that time 2003) The only thing I have noticed in the past 4 years is my eyesight has gotten poor ( noticably)

and it all eventually went away leaving me with the odd day of lightheadness !
and again this last time was the worst for me ever but not to the point of spinning like crazy and vomitting ! just quite off balance things moving around me

although long post.......... this is a shorter list of my symptoms and history I gave my doctor and with so many of these things it could be anything causing it lol I always thought and felt i was quite healthy

No wonder I m feeling so confused ! ah well another day and moving on with it

Meeshyell

My hearing loss is in both ears, although the right ear is slightly worse; and it fluctuates. All my other tests came back 'normal'.

Good luck, hope you get some answers soon.

Fudge

Hi Meeshyell

Take that entire list of symptoms and your history to your next specialist. There are so many clues in there as to what it could be, that they'll have to look at everything.

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xx


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Thank you Pam ,

So I am not crazy after all?? lol........... after everything that I have read there are so many things that have went on I think thats my confusion so hopefully being sent on is giong to be the key for me as I am not at Dr. !

On another note , finally after searching for almost 6 months !!! I have located the ENT that had ordered audiology testing, a neurologist apt, as well as the I think its the caloric test (hot/cold water) plus another with the red lights you follow , also Iam not sure if it was a MRI or CT scan , for the life of me I could not remeber who it was as it was on Vancouver Island and in 2004 (not 2003)

anyways I called a few ENT's out there and made them all check for my name , if they did not find it I asked for a few more ENT names and kept calling unitl one rang a bell and BINGO!! I have sent in a request to have my past records sent to the new specialist so hopefully they will be able to rule some more out b ased on comparison !

but again all those tests only showed inner ear nerve damage and I never got a diagnosis and suffered the odd dizzy/lighthead and on occasion sinus pressure feelings but never tinnitis or full ears/head like it states with menieres unitl this last episode ! I have no idea if thats the way menieres would begin but from my reading they all walk hand in hand 4 symptoms when only I had the dizzy part !

Meeshyell,

Sorry for late reply on this one.

I first saw the Professor in November and he diagnosed me with VN...with inner ear damage from the viral infection that I suffered in September.

It was a GP who told me he thought I had Menieres. He used to work in ENT so is regarded as the ENT specialist at my surgery.

The Professor didn't exactly tell me why I didn't have Menieres but he went through all the symptoms. He was absolutely adamant that it wasn't Menieres. The main thing I think was that the fullness in my ear didnt occur when I had the spinning vertigo attacks.

He said the fullness/pressure was a blockage in my tubes somewhere I know he meant Eustacian tube, because he showed me on a model.

If its any help I am seeing him again on 24th I could ask him some questions if you like.

Love

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Julie-Ann

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Thank you Julie Anne for responding to my question ! Any pressure I have ever felt in my ears was also felt in my sinuses (around my nose, forhead ) this symptom came and went and not very often but did ,

I can not say that the ear pressure was at the same time as my dizziness and at one point was told it was eustachian tubes as well !

The more I have read and studied the more I think my doctor has made a mistake !

I have read some incredible stories of how sick and dizzy people were with ear pressure at the same time, I have never had to hold on to the walls, or crawl, and I know some of you had and my heart goes out to you all !

although My vertigo was terrbile for me........ I dont think it was as bad as in comparison to some of the people and the stories I have read !

Once again thank you so much! I am not sure at this point what to ask anymore, although I would love a direction pointed out in wich way I should look LOL ! this drives me batty ! ( i know , no one can tell me ) its just a wish ! ....

But to anyone reading this ! Is it possible to have suffered labs in the past ! and then have it come back years after ??

and having been told I had inner nerve damage would that not point more towards VN ? although there is no hearing loss with it , but I do have low frequency loss ? These are some things that I cant pin down !

Hi Meeshyell,

I just typed out a lng message to you and I lost the whole lot because my computer is doing silly things...nevermind I will start again.

I have suffered with numerous bouts of what my GP's have referred to as Labyrinthitis over a period of about ten years. I always receovered within a week or so in the past but with the bout that I had in September 07 I didnt recover hence the way I am now.

Doctors always seem to refer to viral infections of the inner ear as Labyrinthitis. I think that without the hearing loss these infections are actually vestibular neuronitis.(This is as I understand it..if I am wrong hopefully someone will correct me).

Since I had the inner ear infection in September I have developed the ear pain and pressure and possibly MAV too. I understand that these things can develop from inner ear damage which is something caused by the viral infection.

Does this sound similar to your experience at all???

From what you have said it sounds like you have suffered Labyrinthis...viral infection of the inner ear, which has caused you permanent inner ear damage. It sounds like you have had Labs as opposed to VN because of the fact you have hearing loss.

I dont know if I have helped at all or just gone over things you already knew...I apologise if I have.

Perhaps Tom our advisor may be able to clear some things up for you.

Love

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Julie-Ann

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