Do I have MAV?

Hi there - I have just been directed to this forum by someone from the Menieres forum.
I have recently been given an initial diagnosis of Atypical Menieres disease though all the tests that i have been given for this - caloric, hearing etc etc have all come back negative. So now I am questioning the diagnosis.
I have been off work for 8 weeks now with dizziness/imbalance. I cant drive a car, go to work, go to the shops, go out in the dark etc.
I can walk for short periods up to about half an hour though have to rest for a while afterwards. I have the fullness in the ear and the tinnitus though not so much that it disrupts my life.
I have had several “one off” attacks of vertigo with the last one being the most violent that felt as if I was going to hit the ground (I was sitting) and everything went black.
I always suffered from migraines when I was younger, always suffer from headaches and very short (few seconds) waves of dizziness for the last 20 years. That part is always worse around periods and ovulation.

The last week or two i have had some severe headaches that have made my imbalance/dizzies much worse one resulting in the violent attack mentioned above. I have days when despite a slight imbalance I feel almost normal and then other days when I am physically exhausted, very dizzy and nauseous with or without the headache. I have no idea how I am going to feel until I get up in the morning
Does this sound similar to what you guys experience?

hi Kitty

I came here from the Meniere’s forum too. Like you I have no hearing loss but pretty constant dizziness/imbalance along with mild/mod/severe headaches on an almost daily basis at the moment. I also get vertigo attacks mainly premenstrually although not exclusively. I find that the more severe the headache the worse the dizzies/imbalance. I’ve had symptoms for 10 yrs and have been told, like you, I have atypical Meniere’s. I am contemplating seeing a neurologist to talk about the MAV possibility. At the moment I’ve pretty much diagnosed myself as the ENT specialists I’ve seen can’t come up with a definite diagnosis. It does sound like our symptoms are similar.

Hope this helps.
Chris

Hi Christina,
it does doesnt it! It is nice to speak to someone that has similar symptoms as sometimes I just feel like a bit of a fraud.
How long have you had this and what kind of tests have you had so far?

I will be going to visit a neurologist so when I get the appointment through I will let you know how it goes.
I stopped taking my betahistine and any herbals plus relaxed on the salt diet, had some red wine and then found myself feeling much worse again and my ear doing its normal feeling full and hurting.
I am going on an 8 hour flight in two days and am quite worried about it.
it does seem that people with menieres dont suffer from flying but seeing as I have no idea whether I have that or not its difficult to know whether I will suffer.
Any tips you have to offer are gratefully received!

Hi Kitty

I’ve had caloric tests, MRI scans, a range of balance tests at the Leicester Balance clinic - all many years ago. They found I had a definite balance problem at Leicester but were not convinced it was Meniere’s either. I have had symptoms for about 11 years now. As I approach menopause, I am sure they are getting worse too!
I shall be interested to hear how you get on with your neurology appt - hope your flight goes Ok. Take a decongestant before you fly - it’s supposed to help keep your ear pressure stable. Good luck.

Christina

I have got some phenergan which is apparently for travel sickness that I am hoping will do the job.
Have you flown with it?
I have had all the tests but they say that my balance is fine. I dont know if that is because its too early or I just dont have a problem at all, but clearly I have some kind of problem else I wouldnt have been off work and unable to function normally for 3 months.
I will be back to post how I got on and see if anything useful came out of it. I have heard about the Leicester balance centre - was it any good? my consultant said he would send me there if the neurologist came up with nothing. was it worth the trip?

Well I had to pay privately to go to Leicester and I understand they are not accepting any more NHS referrals. There is very little in my area which specialises in Balance problems. I think it was worth it at the time but looking back it hasn’t offered the answers I thought it would.

You have only had your symptoms for a very short time Kitty - your balance may not show any problems as yet. As I said, my symptoms started 11 yrs ago and gradually over time I noticed that my balance is worse. I feel very unsteady and wobbly. I used to have tremendous problems in queues - I would feel as if I was about to fall over. The headaches have always been a feature of the last 11 years too.

Anyway, I am sorry to say I have not flown since I have had symptoms. I have been too nervous, although as you say, many people with balance stuff don’t have problems flying. However, I also know of people who do so … Phenergan is an antihistamine which will make you drowsy and also helps ‘sedate’ your inner ear. It should also help with any nausea, which is why it’s used for travel sickenss. You may find a decongestant spray will help as well - it keeps the eustachian tube open which helps your ear deal with pressure changes.

As you are at the start of this illness you may find that over time your symptoms just disappear - this may all be a result of a virus. I really hope so.
Let me know how you get on with the trip.

Chris

Hi Kitty,

My story is similar to yours and Christina. I have had balance problems for over 20 years and like you I worried about flying, but forced myself to get on a 5 hour flight about 5 years ago and I have flown at least twice a year since.

I find the biggest problem is all the queues, I also recommend a decongestant spray before and during your flight and these are my top tips:

Assuming you are not travelling alone, sit down whilst they queue to check in, joining them when they are close to being served.

Get a window seat, preferably not over the wing, so that you can focus on the horizon or something else when the plain banks.

I find take-off a bit dodgy but that is only a few minutes of the journey.

Try not to travel at night, but if you have to you can still find something to focus on outside.

I am trying to get the courage up to fly to Australia next year. Let me know how you get on.

Good luck,

Robert

Hi - just to let you all know that I survived the journey and the holiday though I was clear all holiday only to be hit with the dizzies again on the flight home.
I am not sure whether the nasty headache and no sleep the night before is what set it off but I definately have them back.
Still I have gone back to work because I cant sit at home forever though I only managed to do 4 hours before I had to call it a day.
My neurologist appointment isnt until June and thats through private! shocking but what can you do?

Hi Kitty

Well done for getting through the holiday relatively unscathed. Sorry to hear things have returned but, as you say, it might have been a combination of factors - no sleep & headache. Were you dizzy on the flight out or just on the return.

Christina

Funnily enough just the return home but did have a killer headache the night before so am not surprised, just disappointed. And more disappointed because it is hanging around again
Its been a tough week at work but at least I am only doing 4 hours a day at the moment so makes it a bit easier.
Of course I didnt watch my salt on holiday either so could have been anything