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Title: New Member
Description: hello


Lynne - December 1, 2011 01:41 PM (GMT)
Hi, have just seen an ent consultant this morning and feeling a bit confused. Have been feeling a lot of pressure in ears (mostly left, but some in right too), some pain and tinnitus. Had a couple of vertigo episodes in summer but nothing too bad. Went to gp as thought my blood pressure was causing symptoms and she mentioned menieres and arranged ent appointment. Have been reading up on disease and I seem to share many of symptoms. However had hearing test today, and a procedure to test pressure in ear. Results of both were fine and consultant said it was unlikely I had menieres and my ears were healthy. I should stop being anxious but he could arrange for some help with tinnitus at a later date if I felt I needed it. Didn't have any suggestions as to cause of fullness other than my ears looked perfectly healthy. Just as I was leaving I mentioned I was having some vision disturbances and could that be connected. He asked me to stand up, hold out my arms and close my eyes which I did and promptly fell backwards (completely to my surprise). We repeated this several times with same outcome and he said it was very unusual for someone of my age (52) to have such bad balance. He's now arranging for a scan and an appointment at a balance clinic.
I'm now wondering if its possible for me to have menieres with no hearing loss or apparent pressure in ear - are those tests I had today definitive? And if so, what other possible diagnoses are there other than a tumour? Sorry this is so long, but its a relief to be able to share this.
Lynne

Barbara - December 1, 2011 01:57 PM (GMT)
Hi Lynne,
Glad you have found the group and managed to post. Welcome :wavinghand:

First of all don't panic about tumours as this is very unlikely but has to be ruled out by MRI.
Fullness in the ears can be caused by many things. I have some fullness in my good ear in which I have hearing loss but I know I do not have Meniere's in that ear as mine was surgically induced in my bad ear.
Vertigo can have many causes and it is usually only after everything else is ruled out that Meniere's might be confirmed.
Unfortunately there are no definitive tests and some times it is a case of wait and see.

There is a condition called MAV Migraine associated vertigo which gives the symptoms of MD but without the hearing loss and as you have some visual symptoms this might be a possibility. There are people on here who have MAV or a combination of MD and Mav so I am sure they will fill you in.
Your consultant sounds to know what he is about. Which Balance Centre has he referred you to?
Hope that helps a little
Barbarax

Kath - December 1, 2011 09:21 PM (GMT)
Hi Lynne, welcome to the forum. Can't really add much to the advice that Barbara has given. Don't worry about tumours, the chances of that are very small indeed and MRI will rule that out. It is standard for the consultants to refer you for this scan. If you are going to a balance clinic they should be doing standard tests to reach a diagnosis. It's good that you are not getting too much in the way of vertigo attacks.
do keep in touch with how you get on
best wishes
Kath

sharon - December 2, 2011 12:09 AM (GMT)
Hi Lynne :wavinghand:
The tumour they would be looking for is an acoustic neuroma and these are always benign.
The chances of it being that are pretty slim, but it's a good thing to have the MRI just to rule it out completely.
I've got bilateral MD and according to my consultant some MAV going on too.
He said that he thinks I'm getting a painless migraine at the back of my head which is causing vertigo. I'm not sure that I agree with this because I get really bad migraines with lots of pain and these are always across my forehead usually over one eye.
I don't know if you suffer with bad headaches, but you can get visual disturbances even if you don't get any pain and these are occular migraines.

You might find the balance excercises help, but bear in mind theses can only be done whilst you are not getting the vertigo attacks.
Let's hope you get some answers soon to put your mind at ease
Sharon

SUsie - December 2, 2011 08:13 AM (GMT)
Welcome from me too Lynne :wavinghand:
Can't really add anything further than the comment made by my fellow MD sufferers.
It may sound easy and trite for us to say "try not to worry re tumours" however the likelyhood of that being the cause is very small and it a proven fact that stress exacerbates dizziness etc.
There is a wealth of knowledge in the posts and within the people on this forum,please utilise this and keep us all updated on your progress.
Susie.

Lynne - December 2, 2011 09:50 AM (GMT)
thank you all for your comments. I've googled MAVmigraine and some of the symptoms do sound familiar. I think what worried me most was the consultant saying almost categorically that it wasn't menieres and that there was nothing wrong other than tinnitus. It was only when I was leaving that I asked about the vision thing and his attitude changed completely when he tested my balance. Funny thing is I didn't even know I had a balance problem - I feel a bit unsteady sometimes but have a problem with nerves in my foot after a prolapsed disk, so have always blamed that!
Anyway, thank you for the support and I'll let you know how I get on with the tests - they're at York hospital, anyone had any experiences there?

Barbara - December 2, 2011 12:57 PM (GMT)
Hi Lynne,
I live in Harrogate and my consultant was in Leeds before York Balance Clinic opened. The consultant there should be Mr Andreas Nicolaides who has spoken at the Meniere's Society Conference soyou should be ingood hands.
Barbara x

Lynne - February 29, 2012 12:45 PM (GMT)
Hello everyone. Since I last posted I attended balance clinic four weeks ago. Physio told me I was heavily visually dependant, audiologist said that I had nystagmus and in calorific testing there was a sufficient difference in ears to account for balance issues. There was no loss of hearing or infections etc. Had already been told by ent consultant that I didn't have menieres. I was told the consultant would review the results and write to me in two weeks. I phoned today for info, but was told there was an eight week admin backlog, so I shouldn't expect letter before May. She was unable to tell me what was in the letter as it was dictated on tape, but she said there was a tag on file to initiate vestibular rehab. In meantime have had a barrage of other symptoms (persistent tremors, pain and numbness in arms and legs etc etc). I have no idea if these are related to the vestibular symptoms, or a coincidence. I'm waiting for a neuro appointment, but told I could wait 5 months. MRI scan was clear.
I was wondering if anyone could give me any insight of what the underlying cause could be, as I wonder if vr suggests or rules out anything? Main symptoms are unsteadiness and vertigo if I can't fix ny gaze on something ie flat open spaces, can't remain upright in the dark, also have wobbly eyes and eyelids in dark (is that the nystagmus?). Position doesn't seem to make any difference.
From reading various posts I realize all this waiting is almost the norm, so I wonder how others cope as I'm finding it really difficult to be patient...
Lynne

Barbara - February 29, 2012 07:30 PM (GMT)
Hi Lynne,
The numb arms and legs definitely sound more neurological than vestibular so it is good you have a neuro consult lined up just to be on the safe side.

VRT may well help, providing you are not in an active Vertigo phase and can be effective without it necessarily being Meniere's.

Only the medics can diagnose what is wrong and the direction of the eye movements,
side to side or up and down might help with this.

Barbara x

Lynne - March 1, 2012 07:12 PM (GMT)
thanks Barbara, I knew there would be no easy way to rule anything in or out, I was just hoping to narrow down the options! Its frustrating that I can't get results of tests for a couple of months yet - there doesn't seem to be much point in having them if the hospital can't afford the admin staff to send them out.
Just wondering, I'm no longer able to drive at night - or even go out alone for that matter, as I'm so unstable. If this is down to an inner or middle ear problem then - in your experience - is there any chance of it resolving, or am I likely to be stuck with it? sorry to ask direct questions you probably can't answer, not knowing what the actual problem is, but being in limbo like this doesn't give me many options to ask the specialists.
thanks, Lynne

Barbara - March 1, 2012 07:46 PM (GMT)
Hi Lynne,
In a way I am surprised that your consultant is posting the results to you rather than seeing you in clinic as they usually want to discuss them.
Difficulty coping in the dark, or night blindness, has many causes including actual vision problems. Vestibular problems mean that you will be unable to balance because you are unable to focus as easily in the dark and therefore you have reduced input from both ears and eyes. I have this during the day and it causes a problem called oscillopsia where my vision blurs when I or things around me are moving. Mine is caused because I have a lazy eye as well as only one balance mechanism as I have had a labyrinthectomy on one ear.
Vision helps you during the day but cannot compensate as easily in the dark.
VRT will help you not to be quite as visually dependent as your brain will learn to accept the signals from your ears. You might however still struggle in the dark to some extent.
Barbara x

Lynne - March 2, 2012 08:47 AM (GMT)
thanks again, Barbara. Looks like mum's taxi service will be confined to daylight hours...

sharon - March 2, 2012 10:46 PM (GMT)
I'm not good driving at night either Lynn. It's not too bad when I'm on main roads but when I hit the narrow lanes and there's no street lighting, I have to really concentrate when a car comes towards me with it's lights on. It can leave me feeling quite disorientated after a while, so I don't venture very far at all in the dark.

I agree with Barbara that any numbness sounds neurological rather than vestibular.
You might find that if things settle down, your balance will improve. Fingers crossed this is the case!
Sharon




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