Hello...

My name is Cat and I'm partly diagnosed with Meniere's Disease. My doctor feels it is that but I am awaiting seeing the ENT people again on the 8th of next month. For now I am not to go out alone or on long trips even with someone...my doctor doesn't want me falling over!

I have tinnitus in my right ear, ranges from a high pitched ringing sound to a whooshing sound...can come and go as it pleases. Ear feels full most of the time like it's got cotton wool stuffed in it and I get vertigo, sickness and I'm very wobbly when things get bad. I also get on and off listening deafness in my right ear. I sleep rubbish, my ear often hurts when the pressure in it really starts to build up. I've had this issue for about a year now. I am on meds to help but they only help so much.

First visit to ENT they checked my eardrum, did a hearing test and congestion test but didn't do anything else, but told me to come back if I was still suffering...so that's why I am.

I find all this rather disconcerting...I never know how I'm going to be on a daily basis, this past week I've been rather bad with things. But then I can go ages without too much wobbling and more the fullness, tinnitus and discomfort side of things. This is all very confusing.

Anyways, hello from me.

Cat.x

Hi Cat,
Welcome to the forum and glad you have posted an introduction.
What you describe is certainly indicative of MD but there are other vestibular problems which can cause similar symptoms. A true diagnosis is often difficult to achieve in the early days and it is often a 'wait and see' game we have to play.
When you see the ENT in November I think you should be asking about what else it might be and what tests can they do to rule out other things. You should certainly be given an MRI, and this ought to have been arranged when you first saw him. This will rule out nasties like brain tumours and MS and also rule out acoustic neuromas which are slow growing.
It is usual to also have balance tests which can indicate which ear is the problem, although you may be able to tell yourself.
Other conditions such as BPPV Benign Paroxysmal Positional Vertigo and MAV Migraine Associated Vertigo, which is migraine often without headache also are possible.
If the ENT looks a bit blank then like many others on here you will need to ask to be referred to a Balance Specialist. Many ENT's know little and have little interest in balance problems and these are the people who are likely to tell you to learn to live with it. Wish it were possible to do this easily.
There are good consultants about but you often need to search them out via recommendation from others but some parts of the country are poorly served.
There is a wealth of experience here so do not feel any question is too trival or be afraid to ask. We are here to help and are just sorry that you need us.

Barbara xx

Hello Cat :wavinghand:
I think Barbara has covered everything, just wanted to welcome you to the group.
Hope you get some answers when you see the consultant. As Barbara said, many of us waited months or even years to get a firm diagnosis. It might be a good idea to keep a diary of how you feel on a daily basis to take with you.
Sharon

Hi Cat, welcome to the group from me too. Sorry to read that you are suffering, but what you are saying does sound very familiar! I hope you manage to get a good consultation on the 8th. I would imagine that they will carry out a number of standard tests to try to confirm a diagnosis. It may also keeping yourself aware of what you are eating, just in case there are any links. Good to see you and do keep us informed on how it goes.
all the best, Kath

Aww thanks so much for the replies. I spoke to my doctor today and he's giving me more medication for my vertigo.

I'm trying to keep an open mind about it being some other cause and hope that I do get a good consultant next visit.

Cat.x

What meds has he given you Cat. Most people try and often stay on Serc -betahistine but this does not help everyone but is one of the few things thought to be a preventative.
Stemetil- prochlorperazine is good to take just as attacks start as it is good for the nausea. It also comes as buccastem which you put under your top lip. Helps your body absorb it if you are throwing up. Stemetil should not be takes all the time for long periods. Stugeron- cinnarazine is also an anti sickness med and this is often given as a preventative. (I had good side effects from this as it helped the veins in my legs!)
Low salt and low caffeine help some people too.

Barbara x

Hi Barbara...

Okies my doctor tried me on Betahistine first but I didn't find it all that helpful, over a period of time it's help seemed to wear off. I am on Prochlorperazine at the moment, because I get terrible retching and sickness with my vertigo. Doesn't stop it happening but seems to lessen the sickness and stop me from falling over. Though today I got myself a support stick, just so that I can feel a little reassurance that I have some back up when walking about.

Cat.x

Hi Cat,
Taking prochlorperazine (stemetil) is ok in the short term but should not be continued indefinitely. There is a buccal form of this called buccastem which is a small tablet you put under your top lip. It is absorbed through the gum and so is not lost if you are throwing up. If you use it as soon as you feel an attack coming on it can keep the nausea at bay. Be careful though if you are also taking oral stemetil.
The stick is a good idea if it gives you confidence whilst you are in a bad phase and it is good to try and walk out when you are able to.
Barbara x