meniere

Author Topic: 1 year of suffering and still no answers can anyone help me???  (Read 1367 times)

Offline blondie135uk

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Hi all

Im pretty new to this forum and was wondering if anyone can offer me any advice.

For over a year now i have had blocked ears, tinnutus, vertigo, balance issues, clumsyness, migraines , nausea, fatigue and muffled hearing. It was first diagnosed as labrynthitis however after it continued for months and months it was then mentioned as menieres disease.

I have had several scans, MRI, CT, ECG and they were all fine. IO had grommetts fitted 6 weeks ago and although the ear fulness seems to have gone all my other symptoms are still here and actually getting worse.

I have severe earache constantly, when ive been asleep my ears are like a vacum to the pillow and feel wet inside. My balance is terrible at night still and next day im noticing i have bruises on legs and arms.

I am on anti depressants now from my GP as im extremely stressed out about how ill i feel. my employers are very unsympathetic and actually keep asking me for proof that im ill!!!
 I work in an extremely well know and busy contact centre and since october last year i havent been able to work on the telephones as i just have constant pain in my ears and get very panicky due to all the noise of 300 people in one room talking at once. Im off work for a few weeks at present but when i return my employers are expecting me to go back on the telephones or face dismissal- this is after 12 years of service believe it or not. Since my illness i have had to sit with cotton wool in my ears every day at my desk as they refused to move me to a quieter area.

The thing is loud environments make me panicky and i start to sweat and feel dizzy, almost as if im having an out of body experience, i feel as if im lifting out of my body and standing there as a blank shell. Other days my vertigo makes me feel like im a pendulum swinging from side to side. I also have problems with hearing even though my hearing tests are fine, when people close to me are speaking i can hear a tone but find it hard to make out what they are saying, does anyone else feel like this? sometimes i also have to ask people to repeat themselves and i feel like they are getting annoyed with me when i keep asking them to say that again.

Im just at the end of my tether to be honest, My bosses want a diagnosis otherwise i have to go back on the telephones , im at the ENT tomorrow for my 6 weeks check up after grommetts but my consultant also isnt the most sympathetic of people.  i just feel ill all the time, i cant think straight and have become very forgetful and i dont seem to be getting support from anyone.

Does everything ive described sound like menieres?  If so does it get better ? who diagnoses me and how??

any help would be wonderful



Offline SJ

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Hi & welcome to the forum,

I was so sorry to read your post but if I am honest you describe it just how it is for me (mostly) so I really can sympathise with you. It certainly does sound like MD but from what I have been reading on here lately it seems consultants are not keen on giving a diagnosis I really don't know why?? You seem to have had alot of tests and the grommets are one of the first treatment options with md. I myself have had them a few times - most recently last November but they didn't help me but don't be disheartened as they can help and I know it can take a few weeks for it all to settle down.

At your appointment tomorrow you need to be very firm with your consultant and make sure you tell him how you have been and excatly how much this is affecting your life, explian that you are having problems with your empolyer and that you need to be able to tell them excatly what it is you are suffering from. Don't be fobed (? not sure on that spelling!) off - you have every right to get a diagnosis and we all wait a long time for these ENT apt's so you must make the most of it - write everything you want to say/discuss down that way you won't forget when you get in the room (I used to do that alot!)

You have found somewhere where people really do understand how you feel and we are a friendly bunch so any questions you have just ask, I hope your apt goes well and that you have a positive outcome.

Take care
SJx

Offline Emma

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Hello and sorry you are having such a rough time.
I don't think I can really add much to what SJ has said, I would reiterate the part about writing down everything you want to get across in the appointment and following this keep a daily diary of how you feel/the effects of what is happening.
What you have described is what a lot of people on here also describe and I really don't cope well with loud environments and get quite stressed out when I am on the phone and others are talking loudly near by...

If things persist and the ENT appointment tomorrow is no help you can get an emergency appointment to go back.

Hope things improve for you quickly and I really hope tomorrow is a success
Let us know how you get on.
Em xx
Be happy - Keep smiling :-D

Offline GYROSCOPE

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Hi what you describe sounds awful but familiar ,the people on this site are very helpful keep asking questions you will get advise ,between us we have all your symptoms.
You don't mention any medication apart from antidepressants tell the specielist how you are affected and ask about drugs that may help .
I take 6 tablets a day for MD .
Good luck for tomorrow
Tony

Offline Christina

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Hi

It would be good to pin your specialist down to a diagnosis if you can because Menieres is covered by the Equality Act and as such your employers are required to make 'reasonable adjustments' to your working environment to enable you to remain in work.  They may need to consider a different role and take you off telephone lines, but first you need a diagnosis and a talk with your Occupational Health dept and Human Resources.  It s also a good idea to involve your trade union if you have one and if you are a member.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

Offline amezcua

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Hi Blondie.  You certainly are having a terrible time with it. It`s all sounding rather familiar.  I wanted to say the boss you`ve got might be in trouble for bullying . There`s no excuse to pressure you like that.  If you have no hearing aids it`s an impossible situation for you.  Long term you need a quieter working environment till you adjust. That`s your choice though and not your boss`s when you are ill.  The doctors do their best to figure out solutions but they are never 100% sure it will work so you may have to test different tablets to see what they do for you . Hope you get rid of the earache. I used to get that when I was very young. Nothing worse, apart from toothache, (or a dislocated shoulder, I had that once).  When the hearing went for a while I found that very boring and isolating .I could not even hear the radio.  Comedy shows demonstrated that I could never hear the punch line. Even jokes were off the menu.  Chap`s are not so bothered in some ways. Ladies do like a good chinwag and that will be tough to miss out on.   So anyway ,  get your doctor to sign you off work and they can`t touch you then. It`s against the law.    It won`t go away completely but it won`t be there all the time.