How many more bloody kicks in the teeth???

[Spacecadet]

To cut a long story short, I have4 kids, youngest is 8 months, after the youngest I had a life threatening health scare, then delveloped ptsd as a result, then just as I was on the road to recovery I started suffering awful dizzy spells, then found out I was preg again, then lost my baby at 16 weeks on weds, then as If that isnt enough today I was daignosed with menieres desease which is an incurable inner ear desease which causes horrifying spells of rotaional vertigo which put me in bed for days on end and are completely unpredictable, and I will eventually lose my balance all together and my hearing, my life feels like its over, I cant bear to go on never knowing when I will have an acute attack and feeling chronically dizzy day in aday out, how can I be agood mother to my children?Dh will prob have pack in work to look after me, its not fair.

pinotgrigio, can I ask, has your tinitus got better too?

Hi Cadbury. I was lucky & I didn't get tinnitus with mine, just the dizziness and nausea.

So sorry Spacecadet. Wish I could hold the room steady for you so you wouldn't feel dizzy.

i dont realy get bad tinutus, or deafness just dizziness, which issevere, attacks last about 3 days on average

if there is any one with menieres who woukld like to cat me id be really grateful to hear other peoples experience of this hideous illness

Message withdrawn

no itsa torrential downpour and a hurricane!

Spacecadet, I can only reiterate what I said to you back in December. My experience of Menieres was that caffeine exacerbated it, and I avoid it still. Additionally, I had an ear operation (NOT the last resort nerve section referred to by someone earlier) - had a grommet inserted which lasted for about a year till it fell out. This stopped the attacks, though the mechanism for this is not clear. I carried my betahistine around everywhere for a year ot two.
NB, you will need to avoid fairground rides, watching anyone spinning round, etc as someone else mentioned.
Yes I have been there, holding onto the floor wishing it would stop moving so violently. BUT I have been generally free of big attacks for about 4 years. There are ways out - no you will not necessarily lose your hearing - no you will not necessarily permanently lose your balance. It's really not that uncommon or special, and you'll find out a lot of people who have it and live with it.
Definitely trawl some of the internet support groups as there are lots of hints and tips to help you avoid attacks or recognise what makes them worse.

thankyou catinthehat
Did you find that once your condition was diagnosed and you got the appropriate treatment that helped with the attacks?
The most destressing thing is that at the mo I find that the attacks are lasting about 3 days, I have been advised by my gp to avoid, stress, caffiene, salt etc and have started on betahistine and a diuretic tablet.The op I have heard of is endolymphatic sac decompression, is that the one you had?
I have already looked up reseach on grommets and apparently they can help and they arent sure why.
Im going to see the consultant in a month..hopefully to discuss options.
I find that car journeys and stress..also supermarkets are bringing on attacks at the mo.

Spacecadet. One thing that helped was being very aware of the tiniest bat squeak of the Menieres sensation lurking. Then I would think about and stop whatever was causing it.

Its a balance thing, the liquid in your inner ear is not registering your position in 3D space as it should be. But balance is also partially to do with your eyes and other parts of your body.

So if your computer screen is a bit skew whiff, you may feel the "lurking". Stop, move it till everything's straight. Likewise, in the car, heavy cornering can start the "lurking" sensation. So take them gently. Supermarkets are bad, because you are fighting the weight of a trolley and that messes up another of your body's balance sensations. Realise what's going on and compensate for it if the "lurking" starts. Anything stressful that makes you hunch your shoulders also somehow stops you balancing yourself. Whether or not you relax(I can't relax to order!), just try to undo your neck and shoulders as this seems to take the pressure off the contents of your inner ear somehow.
The next time you get a break from one of the attacks, or you feel one dying down, try to go on the offensive. Look out for the "lurking" sensation and force it out with medication, physical action, moving slowly - anything you can think of.

Don't panic, don't worry, it is stressful, but its also weirdly fascinating to look back on a good bout. You will truly smile (just about)in the future at the times when you had to cling to the carpet in the hall to stop yourself falling off the world.

Goodness catinthehat. 'Falling off the world' is the best description I've ever heard about suffering from menieres.

Sorry I wasn't more involved earlier spacecadet, I was away from a PC. How are you feeling? Does it make you feel better knowing that it can be coped with?

I've only just seen this sc - what a nightmare time you are having . I hope you find ways to relieve this condition, it sounds awful, and so unfair, coming as it does on top of everything else you have been/are already going through.

Thinking of you xx.

I dont want any one else to suffer like I do, but at the same time itssomewhat comforting to know that others cope
Catinthehat, I laughed at you saying falling off the world!!
I feel like that during my attacks, its horrendous.
The other day, i clung onto the headboard on my bed, to stop myself from, falling off the world!!
Like being on the scariest fairground ride ever, uurrggh!!! I do seem to get an aura as it were, and stress def plays a part in my attacks I think.
I also get really full ears and a sensation of water in my ears and a thumping noise.
My attack is slowly wearing off, has been 3 days now, since the actual spinning, but now I cant walk properly, cant focus on anything, too ,long and cant turn my head either.Evry tap on my keyboard, echoes inm my ear and I get the thumping in time with my typing!

@Spacecadet how are you now ?