Benefits

Hi Tanya,

I started about seven years ago, and was bad for a couple of years then it began to tone down, less frequent etc until it was next to nothing, until October last year when it came back with a vengeance, worse than ever.  I too had been led to believe it burned itself out and led into a false sense of security, thinking mine had done just that.  But it doesn't, and mine didn't.  I couldn't believe it when it came back worse than before, with new drop attacks (I'd had warnings before for days at a time), more frequently, more sick than before, dizzy virtually every day, bad ever three days.  Talk about depressing.  I am just hoping that it will eventually tone down, like it did before, but not holding my breath. 

What really depressed me is that my dad was 26 when his MD started and he had his last vertigo attack at the age of 78, two days before he died. (he'd had spins for about 3 weeks)

When I saw the specialist a month ago, she told me "it will burn itself out" so I lost my temper and said "when, 2 days before I leave the planet, like in my dad's case"

"well there are exceptions" she said!!!!

I said "look, just tell us the truth about this, if you don't know, say so because I'm losing faith in the human race, especially medical people. I've read every published article about MD and a few that haven't been published, we do do our own research, we have to, we're not told enough"

I walked out

My husband has had it for over thirty years and it still flares up from time to time.

The trouble is we're all different. My dad's attacks were in clusters of every day or 2 for 9 to 12 months, then a gap of 5 years - we all thought it had gone. 

then another cluster of every 3 days or so for another 6 months. Another break and more attacks 3 years later and so on.

My partner has massive attacks every 2 to 3 months

He's the only good thing to come out of having MD, we met through the Meniere's Society.

His dad had them twice a year or so

Do you think it is hereditary?  My husband and I met quite differently and I only developed it after we met, so it is random that both of us have it.  He was in remission when I met him so had no idea what it was all about until I started with it.  Luckily he recognised the symptoms straight away and was able to tell me what was wrong.  He gets little bouts of dizziness at the moment, but hasn't had a biggie for ages.

I've got MD.

My dad had MD. 

My partner has MD. (we met through the MD society)

My partner's dad had MD.

So there definately seems to be more of a chance that kids will "inherit" this horrid disease, if both parents have it. Slightly less of a chance if just one parent has it.

We have no kids, we met late. (I would not want to put anyone through this. I know my dad felt so guilty, even though he didn't know about it at the time)

The balance / hearing centre say that inherited MD occurs ocasionally, but then, I've never been asked by anyone medical, anywhere, if either of my parents had it. (they did) So they're records are going to be wrong if they don't ask anyone!

there is some debate as to  - the MD itself may not be inherited, the weakness in the ear (s) may be inherited which causes the problem to develop into MD.

"They" are still doing research on this in the UK and US

As far as I know neither mine nor my partner's parents had MD, but both of us do and we have a child, so I worry he might get it one day too.  He used to get lots of ear infections as a small child, so definitely has had ear problems.  I would hate it if he did, but I didn't get it until after he was born so had no idea I might pass it on.

Do you think Julius Caesar had it?  He's supposed to have suffered from some kind of dropping sickness, which I have read people thought might be epilepsy.  But MD would fit the bill I reckon.

I wonder how common MD is, as in what percentage of the population suffer from it, how many sufferers there are etc.

I think you could be right about Julius Caesar. . . There are rumours that Van Gogh had it too. . .

I remember dad saying that his left ear drum was damaged while he was diving into a swimming pool around the age of 14. He had dizziness afterwards on and off for years but it was mild compared to the MD vertigo he got later in the same ear.

So some sort of trauma or infection could be the trigger.

Dad developed MD in his right ear in his late 50's after a bad cold.

I was told I had Labyrinthitis when I first had spins, my doctor said I'd got some inflamation. 3 months later I had got full MD. (but that could have been misdiagnoses of Labyrinthitis in the first place - my mum never had any faith in that doctor!)

I'd had the occasional ear infection as a child, and had really bad measles at about 6 years old and was partially deaf for 2 years after - maybe the damage triggered MD.

They think that more people have it than the statistics say, It used to be 1 in 2000 people about 10 years ago. Now they say it's 1 in 1000,

The trouble is it can be "hidden" from statistics as some people just live with it, not seeing specialists etc. Some are not diagnosed properly (my partner's doctor - when he lived in Devon- thought he had food poisoning! he was only diagnosed with MD when he came back to the midlands. some people may have other inner ear disorders not MD or have MD and be diagnosed wrongly. (there are an awful lot of ignorant GPs out there - I had to tell mine what I'd got after seeing specialist, he had never heard of it!)

Funny thing is, we (partner and I) have met a lot of people who have it, or know someone who has it, just by chatting to people in everyday life.

Fingers crossed for your child

 

When I've got a bad attack, cutting off my ear sounds a good idea!

I definitely seem to suffer worse than my husband, who is able to keep on doing things when he has an attack.  Needless to say, he thinks his attacks are as bad as mine, but I can tell you, they're not.  He had his first one at Victoria Coach Station years ago and of course was mistaken for a drunk, but he managed to get on the coach and travel to where he was going, which I certainly would never have been able to do.  They'd have been calling an ambulance for me, I can tell you.  I have been hospitalised twice in the past, on intravenous medication, so I know how bad I have been and it is worse than him!

 

Ha ha I agree. If a full blown attack comes on while I'm out I worry I can't travel home. My partner is at deaths door whenever he has a cold and I know for a fact he'd never cope with Meniere's attacks ever!! Lol. He tries to sympathise when I have an attack, but he doesn't realise how much it takes for me to try and act "normal" when I'm suffering. He'd be bed ridden! 

I am bedridden, if there's a bed!  Although my new meds do damp down the symptoms somewhat and I have recently been more able to stay in an upright position!  Which is the position he achieves anyway.  He is prone to telling me he "feels unwell" but when I press him on how he feels, he can't explain.  I can always explain my symptoms.  Fishy, I think!

I know your post was from a year ago but was wondering how you are getting on? Did you need ill-health retirement in the end? This is something that is concerning me. I have had this for over a year now had a lot of time off sick and have no idea when I can return from this bout. I have applied for PIP but no idea if I will be granted it because I don't actually have a diagnosis yey. All I know is that no two days are the same. I am never clear of this balance problem and deal with it every day. I can have one relatively 'OK' day and cope relatively well but be so off kilter the next I am stuck on my sofa. Driving me nuts. Missed most of the summer, can't walk my dog and so fed up with it all now. No life at all basically unless I rely on someone else to take me out in their car.

Hi dawn35319'

i am at the moment claiming pip, I applied and went for an assessment and got turned down complete, so I took it to the  tribunal  and won. So it's worth frightening for, took about a year to get it in the end. I'm like u can't leave the house unless someone is with me at all time, even to walk my dogs 😞 It's awful. Hope u get yourself sorted and claim for what your entitled to x

Thank u for replying Sarita68311. I have an OH appt with their own GP next week so it will be interesting to see what they make of all this. Glad u got yr PIP, every little helps in this situation. I miss having my twice daily walk with my little dog. She has a poorly leg so can't walk much at the moment so I am not feeling quite so guilty about it just yet. My daughter helps me where she can though. I bought a second hand mobilitu scooter to get me out on good days and my dog loves sitting on it and going for a ride so at least I can get out for some sun and air most days. Exhausting though just getting the rain cover off is a mission.