meniere

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Can I do anything to help my partner who has MD?

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Author Topic: Need help to help  (Read 2555 times)

Offline MDPartner

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Need help to help
« on: Nov 02 2010, 02:30 AM »
Dear All,

My partner has Meniere Disease. She has having it since 2000, although only last January doctors got to the diagnose. Like most people with this problem, she has constant tinnitus (with different levels) and vertigo . She is deaf from the right ear, since August 2009, and through out this last year things have got really worth. Maybe this last August, she started to have, some times, tinnitus on the left ear. She started to panic a bit, thinking that she would have both ears affected. Last Friday she began to really loose earring from the left earring. She is waiting for am ENT appointment since June, although she was referred as urgent.
I really want to be supportive (although she says that I am) I don't know what to do. I used ti say that I was sure that it wasn't going to affect the other ear and that she wouldn't be completely death. Now I'm not sure any more. I don't want to make her more afraid. But saying that nothing is happening is calling stupid and she is not.
I don't know how to help, what I should be doing in order for her to feel better. She is 38 and gave up doing a lot of thing because of this disease. Now it's startting to affect her work. It seems that all our lives are going around this problem.
I just what her to feel normal again, to feel good about herself. I'd do anything to take her tinnitus, her vertigo and her deafness away but that I know is impossible.
What can I do to help her?
Please help me to help her!
Thanks

Offline Christina

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Re: Need help to help
« Reply #1 on: Nov 02 2010, 11:28 AM »
Hi and welcome

You are clearly very caring about your partner and it sounds like you want to help her as much as possible.  It's often frustrating for partners and other family members because the condition can cause so many changes to lives, especially for the person affected but also for family too. 

You don't give any information about what treatment she's tried or is currently taking.  There are new treatments now, depending how seriously the MD is affecting her she might want to explore these options with her consultant.  Gentamicin can be injected into the inner ear to destroy balance function and control vertigo attacks, that's one option and one of the least invasive.  If you search on 'gentamicin' on the forum you will find lots of posts about it and people's experiences of treatment and recovery. 

You are very welcome to join in with us and your partner too, if she would like to.  There's lots of experience here, so please ask us.  At the moment, I'm not sure you can be doing any more than you are doing but considering other types of treatment might be a way forward if your partner wants to take that route.

Chris x
not waiting for the storm to pass, but learning to dance in the rain ...

Offline VictoriaPlum

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Re: Need help to help
« Reply #2 on: Nov 02 2010, 02:50 PM »
Hi,

You sound as if you're in a similar situation to me. My mum was diagnosed with MD during the summer and it has completely thrown our family upside down!

It's so awful seeing a loved one suffering and not being able to help. You want to be there for them, but as you don't really know what they're going through it can be difficult knowing what to do for the best.

I have to say you're in totally the right place here though :) So well done on finding this forum :)

The people on here are lovely and have been an absolute Godsend for me and my family. I have been given so much useful advice and found a sympathetic shoulder to cry on. I finally feel like I'm actually doing something useful!

The only advice I can give you is to just be there for your partner. Be there for them when they want to moan or they need a good cry. Try and be as positive as you can be because, from their shoes, everything is very grey and negative.

But, most importantly, keep using this wonderful resource. In the couple of weeks I have been on here I've learnt so much and now my mum has an appointment to see a highly recommended consultant, so things are finally looking up!

Chin up and all the best,

x Victoria


Offline potters whirl

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Re: Need help to help
« Reply #3 on: Nov 02 2010, 03:21 PM »


Investigate all the options and read through old topics on here before your partners appointment so that you can make the most of it and try things in the right order. Sadly, in my experience, ENT specialists vary greatly in their approach but have to listen when a patient (or partner) is well informed. Your willingness to learn, understand and help is admirable and will stand your partner in good stead of itself. Good on you and all the best to you both.

PW
mostly, you'll find me doing exactly what I shouldn't be

Offline MDPartner

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Re: Need help to help
« Reply #4 on: Nov 05 2010, 01:17 AM »
Thank you all for your support.
My partner has tryed vestibular re-education and hiperbaric medicine (I'm not sure if this are the correct names in English) with no results. Of course, not having a ENT appointment has not been helping. This week is being horrible, each day she get deaf from the left ear (the only she could ear from). Today she can't no longer ear the TV or even the phone, and I have to allmost shout so that can ear me. When I got home she just fall apart crying. Tomorrow she will try to to the hospital again to get that appointment. This is exausting, we would like to know what, if any, are the chaces of her not loosing her earing for good and start doing whatever it is possible do be done.
I'm reading whatever I can about this so that I can be helpfull.
She is also in this forum and is finding a great support here.

Thanks again for your support
Maria

Kath

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Re: Need help to help
« Reply #5 on: Nov 05 2010, 06:27 PM »
Hi Maria
Sorry to read that things are bad at the moment, it sounds as if the MD is in an active phase for your partner. If is were me I would probably ring my GP and get an appointment as soon as possible. Get them to find out what is going on with the ENT referral. Perhaps in the short term the GP could review whatever medication your partner is on as well.  Hopefully they have done what they are supposed to have done to make the referral. Don't think that you are being a nuisance; be persistant is my advice.

Unfortunately for all of us the 18-week wait for referral was scrapped  in June so this isn't helping your cause I suspect. At the same time I would also make enquiries with the ENT department at your local hospital to see if they have any record of referral.

best of luck with it all, your partner is very lucky to have you in support of her.
Kathx