menieres disease

[prawnking]

hi my name is shaun i am only 25 and there is a 99% chance i have menieres disease.
for those who dont know what it is its a disease which affects the workings of the inner ear, i suffer from vertigo, ringing (tinnitus), pressure build up in the ear and fluctuating hearing lose which could lead to perminent deafness.
as you can imagine i am ******** myself as it seems i may have too change my job, and might loose my driving license.
cant really talk to the family as they all think they got it some say they get dizzy or sick after spicy food, some say they get ringing now and again by i am living with this day in day out.
anyway i am more gutted about the prospect of having to sit in an office considering from the age of 7 i worked with my uncle (carpenter) and from the age of 14 took engineering classes on saturdays then followed by two apprentaships in mechanical/electrical engineering followed by gas engineering for british gas. i enjoy working with tools mending and making things. the prospect of not being able too is driving me mad.
got a real interest in woodworking a few years ago only just finished building my work shop and look forward to making some great things out of wood.
its nice to finally speak about my worries as cant tell the wife, dont want her too worry as we have a house of our own (mortgaged) and a little girl maddison 18 months old
anyway thanks for listening

 

[Newbie_Neil]

Hi PK

Please see pm.

Cheers
Neil

 

[Adam]

I'm sorry to hear your news. Is their any chance you could continue woodworking if you were using hand tools only?

It sounds very scary - I'm sure talking it through must help - are their any specialist forums for the condition where you can get help and advice from those in a similar situation?

Adam

 

[Neil]

Hi PK,

It sounds very scary - I'm sure talking it through must help - are their any specialist forums for the condition where you can get help and advice from those in a similar situation?

It might be worth joining the Menieres society - at least for the minimum subscription period as you can order lots of leaflets with more info about the condition.

I don't know how much you know about it at this stage, but bear in mind that it is a bit of a generic term which the doctors use for a symptom-based diagnosis - i.e. they don't really know what causes it. In fact there may be several possible causes. One thing which I know has really helped in a lot of cases is to go on a low-salt diet.

Keep you spirits up, as you can live with the condition without having to give up too much.

All the best,
Neil

 

[Colin C]

I am too very sorry to hear this.
It is alot to take on yourself so try to talk to your wife, it be hard but it might be better to shear (sp) with someone close and it would be better to get problems sorted right away IMO.
Best of luck

 

[nonidentity]

Hi there,

I am sorry to hear of your situation. I have a daughter that may also have the same problem however she is at an early stage.

From what I understand (and stand corrected should I be wrong - of course - I am no doctor) that the condition goes through cycles.

What I mean is; the buildup of fluid in the inner ear leads to the balance problem with all side effects however once you have gone through an episode you should feel OK for a period. The problem being is that the periods in between episodes do decrease as a function of time.

What I can say wrt my daughter is the episodes are not too frequent and she knows they are about to hit her - she knows she is unwell just before she has to lie down and be sick.

I think that you should be OK with power tools BUT and this is the BIG BUT you have to take responsibility for extra guarding to ensure you do NOT injure yourself should you have a fainting spell. Also CONSIDER getting a personal alarm (just like the geriatrics [I tell my daughter]) to alert someone (whosoever is looking out for you).

Also CONSIDER buddying up and you should be OK as your BUDDY is with you.

With all above, you being careful and all, knowing and assessing the risks, there is no reason why you cannot continue.

Unfortunately there is an additional investment that you may have to make. Perhaps your local support officer can give guidance and support?

Wish you the best and hope you can get around this CHALLENGE.

Cheers and best wishes.

PS: I personally would sit down and talk to my wife about this - it is better to be open about this and share the challenge. The facts will become inevitably known just a little bit later!

 

[prawnking]

thanks for replies
its nice too actually speak about it i did join the menierssociety about two weeks ago just waiing for the information to come. havent really found any forums though. its just a relief to actually talk about it to others, i find it quite embarassing, i could be any where and start having an attack of vertigo which is not good.
i went to cinema with my wife as i walked in because it was so dark all of a sudden i felt weird and dropped my popcorn everywhere in front of a full crowd. i go to asda shopping because of the noises i can start to pain in my ears and start feeling quite sick.
i have always used powertools most of my life i just hope the specialist still allows me to use them if not maybe i will try wood carving.

 

[CHJ]

prawnking, don't get too despondent, my better half has lived with the problems for nearly 40 years and I doubt that there are many that can match her daily routine and involvement in our local community.

I know no two people have exactly the same problems, as Neil says it is a bit of a generic term, but with understanding support and sorting the medication out to suit your personal needs life can be lived to the full.

As far as safety is concerned then knowing your limitations and doing a risk assessment of machinery use etc. should allow you to carry on your hobby. If on a particular day symptoms are bad, then don't do it.

My better half has worked with and driven farm machinery, won awards for good food prepared in a busy restaurant and travels anywhere at the slightest excuse, this is someone who at the beginning could not even stand up.

It is essential that you share this with your partner, a problem shared is, if not beaten, one that diminished considerably.

As LOML says it is a good excuse not to get the cobwebs down or paint the ceilings (she can't look up).

...snip... i go to asda shopping because of the noises i can start to pain in my ears and start feeling quite sick.
i have always used powertools most of my life i just hope the specialist still allows me to use them if not maybe i will try wood carving.

Ear filters? (selective spectrum ear plugs)

 

[tim]

Prawnking

Sorry to hear your news. I can only echo the advice posted - share this with your wife, she is bound to be wondering what's bothering you (unless you are a pro poker player your anxiousness will be visible) and then the two of you can begin to help each other make the best of the situation.

All the best.

Cheers

Tim

 

[prawnking]

wifes been away this week hopefully we can have a good chat on friday night.
that will be another relief.

hi chj what do you mean by ear filters, are they standard ear plugs or somthing different
cheers
shaun

 

[Adam]

Lots of info here: http://www.menieres.co.uk/

This is a forum similar to this one, but related to menieres http://www.menieresforum.com/index.php

Or here http://www.menieres.org/forum/

A problem shared is already diminished. As people have mentioned, teling your wife will ensure her support. Its amazing what you can achieve when you both are working towards the same goal. Maybe you could get some information to help her understanding to?

The buddy idea sounds good too.

Adam

 

[RogerM]

wifes been away this week hopefully we can have a good chat on friday night. that will be another relief.
shaun

Shaun - I can only echo the sentiments already expressed here. But you MUST share this with your wife. You go through life together, sharing your triumphs (Maddison! ) as well as adversity. Try and imagine how YOU would feel if your wife was diagnosed with a similar condition and she didn't share that knowledge with you. Choose your moment carefully - preferably when you're on your own and with Maddison tucked up in bed and asleep, and I am sure she will be a tower of strength to you, in both practical and moral support, and together you will thrive.

Take care, and let us know how you get on.

 

[prawnking]

i am quite old fashioned for my age with regards too it never being too much trouble too help a neighbour if you know what i mean, what i am trying to say its nice that all of you who have replied express thoughts for someone you dont really know, it is appreciated.
it has been difficult to stay possitive not knowing what the future brings, the replies have helped me see that its not the end of the world
thanks for your support
shaun

 

[CHJ]

...snip...

hi chj what do you mean by ear filters, are they standard ear plugs or somthing different
cheers
shaun

Do a Google on "selective frequency ear plugs" and you will get many hits.

Used around noisy machines, heavy background noise etc. but still allow nearby speech to get through.

If all else fails talk to your doctor about referral for hearing test and prescription recommendations.

 

[engineer one]

hi shaun, like everybody i am sorry to hear your news.

BUT one of the problems with being young is that every thing seems to
be a disaster, as you get older, you learn to accept things more soberly.

i recently discovered that i have a heart, after a long time of not thinking i
had one, and it seems to be operating oddly, but frankly the knowledge makes life easier, not more difficult.

my folks both died within the last two years from cancer problems, and each,but particularly my mother really worked hard at living every day.

some friends who are musicians have part or all of your symptoms, but manage to live with it, and actually make a better life.

as with ALL medical conditions, a positive attitude is always the way forward, but having the help of your family is really important, as long
as they understand the whole story. you may need to tell your wife more
than once so that she really understands the whole picture.

intially you need to do a risk assessment, (yes i know) to
find how things work for you.

most of us find life in asda a pain in the ****
but maybe you will not be able to use portable power tools for a while,
but then static ones may make work safer and more effective. you
might find that sitting at work helps too.

do yourself a favour mate look at photos of your little one, and think
that you are a lucky guy, you are not disabled, and there are still
things you can do, if only to hold the kid.

life is a series of decisions, and this is the first of the next lot you
have to make, so look on the bright side, and think how you
can overcome the percieved problems.

take care, and have good thoughts
paul :wink:

 

[Alf]

...as you get older, you learn to accept things more soberly.

He means resignation and despair have kicked in... :wink:

Shaun, you've had a lot of encouragement from everyone else and I can only say "ditto". FWIW, this forum seems to be liberally populated with many folks living with assorted medical conditions, so we understand how tough things can get. But it's early days yet; human beings are frighteningly adaptable and there's no reason why you should be any different. Contrary to how it feels, your life isn't actually over. No, really, it isn't. =; And hand tools aren't necessarily bad news, ya know... :wink:

Cheers, Alf

 

[prawnking]

after reading all your replies it is helping put my mind at ease, i suppose you can get caught up in your own little world a convince yourself things are worse than they are. it is great to hear from you all with such a positive attitude towards getting on with life, like you say i gotta look on the bright side there are many people out there much worse off than i am, my biggest problem is that i have always been very independant no having to rely on people for lifts etc. something i will have to get used too if they dont let me drive. but hey its not the end of the world.
thanks again for the replies.

 

[Paul Chapman]

Stay positive, PK :wink:

Paul

 

[Midnight]

shaun.. chin up bud.. you're young, and balance aside, fit n healthy... adapting to ailments is always difficult to begin with not to meantion frustrating, but believe me, it's nothing that can't be overcome with some latteral thinking, determination and clear focus on where you want to go...

I'd agree with the others re having a long talk with the wife, if nothing else than to allay her fears and concerns; she's bound to have noticed that somethin's wayyyyyyyy wrong..

You're not alone in trying to carry on as normal despite an ailment... I doubt there's a totally healthy body here and yet, by and large we're still able to flip our respective afflictions the bird now and than... getting on with life despite it...

With time you'll learn what you can do unassisted, what you need to plan through and what'd be best done with someone riding shotgun; there's no loss of face in asking for help, only when trying to plough on past a logical bail out point to your detriment..

Be patient.. you'll work through this... no doubt ending up a far stronger charactor too in the end..