Oh well you look OK

Ears, nose and throat
1

Hi all,

Is it me, or does anyone else have problems with people saying "oh well you look okl"  when you tell them you have been on the bathroom floor all night with violent spins and feel like death.

It still "gets" to me.

Maybe I'm just having a bad week - (ha ha, wish I could have a good one!!)

(I have had MD since 1999, diagnosed in 2001, surgery / gentamicin to left ear, still on Serc, as now have MD in right ear.

The ONLY good thing to have come from this is that I have met my partner through the MD society, he has the same illness  and so understands.

2

I get annoyed, maybe wrongly, when asked 'how are your dizzies'? As if our vertigo sick making rollercoaster rides could be classed as a 'dizzy'!!!

3

My dad used to be really sarcastic to people who obviously hadn't got a clue what it was like to be constantly throwing up for hours and hours. He even had a bad attack 2 days before he died in a hospice, (cancer) talk about adding insult to injury!

You really feel that you are moving on a fast carousel even when in reality you're not moving an inch.

One thing I have found is that as soon as I feel an attack coming on, and hopefully if I'm at home, is to lie down and keep my head completely still. It doesn't stop the "spins" but in 9 out of 10 times it stops me from vomitting, which is a small sucess!  The trouble is I have to move my legs a bit as I have sciatica - probably  due to hours and hours of lying down on cold draughty floors - so, to much amusement of my partner, I move my body around while keeping my head completely still.  He's easily amused!!

 

4

Gosh! And I was having a spin as I held my dad's hand when he died. He too of cancer, brain tumour. Stress plays big part I think! Have you read any of the self help menieres books by 'Meniere Man'. Download cheap to your kindle, either Vertigo Vertigo or Meniere Man and the Astronaut. Both similar so only need to get one. Very very helpful.

5

The last comment made me smile...I too have spent many hours on the bathroom floor, trying to stay still, then slowly getting to the toilet to be sick etc etc...my partner has just put the towel or dresiing gown over me as I just cant get up. Then he has to come and help me get up.

Yes, I get the 'you look ok' but at least not so much now, as everyone has seen me  ill.

I cant work and get the spins daily/weekly.Sometimes I go a few days being OK!!!!! That is usually when I dont go out and do nothing...if I do too much, even cooking, I can be ill.

Luckily I get the onset o0f symptoms before a biggy and I can still drive short distances, but I still have to be careful of 'flickering' through the trees and sunlight I dont like driving in the dark.

On betahistine 32mg 3 x day, and 20mg amitryptiline at night.

We have to keep going so that this disease does not get the better of us.

Keep in touch.

6

I do not get people saying to me directly but I can tell when I explain my conditions and they are rather suprise that I look quite "normal" despite feeling unsteady when I walk or when I am suffering from dizzy spell while in the office. 

i guess the human eyes looks for the usual pale face or sickly eyes when associating sickness or suffering to a person. Hope you are feeling better, do not let what other's think get you down. 

7

No, cause I always look like sh*t after an attack!  People ask me what is wrong, and am I tired or unwell.  Bad luck if you don't look like that!

8

Dear wen 06862

You are so lucky to have a partner that understands my husband of 33years just clicks off to any illness its been very hard over the years .Menieres is a cruel thing to ave in any form

9

Sorry your partner does not understand, we are here to support you. My partner did not understand at first, but I have been so poorly over the past year that he is more understanding now!!!!

In fact, I had another mild attack last night. I just take myself to bed to rest...

10

My DH is absolutely brilliant, even when I wake him up in the night and he has to go fill a syringe and give me an injection when he's not even properly awake.  I couldn't ask for a more sympathetic partner.

11

It helps that he has the same condition.

The only problem is that if we both have attacks at the same time - it has happened once in the 5 years we have been together ( we must buy another bucket just in case it happens again!!!)

 

12

hi Wen, I would also add to your comments isnt it frustating when people tell you you should see a doctor, because a doctor knows, like they think were being stupid not getting it sorted, Ive given up telling people the medical system just isnt equiped or have any comprehension of what we go through, heres some pills, oh they dont work, right heres some some more double strength, oh they dont work, well thats all i can  do hard luck. and that about sums up the help we get.worryingly Ive just had a terrible experience where I went totally deaf overnight, never happened before, my wife rung up the surgery and was told no appoinments available but the doctor would ring me, she said hes gone deaf and were frightened, so they aranged for me to see the nurse who gives advice, as I couldnt hear the doctor, thats menieres understanding for you, incidently has anyone else had this deafness before an attact, the atack was not as servere as normal no vomiting 1st time ever and my hearing returned to its normal level after 48 hours but so scared when this new developement happened

13

Dead right!

Yesterday I wobbled to the end of the street with my walking stick to post a letter and this woman came towards me and I nearly lost my balance (combination of operation to left ear and me not concentrating on walking - why do people laugh when I tell them that??!!)

Anyway she said "Oh, are you ok?"

I told her -" Yes, it's just my Meniere's playing up"

"Oh, you need to see someone about that"

Well that was all I needed - She got the lot!

I told her - " I've seen the top specialist in Leicester - the late great Jim Cook, I'm on the drugs, had Gentamicin Op, I'm on low salt, no caffeine diet, My dad had it from the age of 26 to two days before he died.

There is no cure - oh wait, yes, death stops it. Do you think I want to be like this, I've lost my job, friends (they soon disappear when you keep saying no, I dare not go far)"

And wobbled off

She ran after me apologising, "but you look ok"

AAAAAAAARRRGGHHHH

Anyway,

Yes, I used to have a 30 second warning of an attack. I went deaf completely in my first ear (left) so it gave me time to sit or lie down if I was at home or call for help if out (scary that, it happened too many times)

After the attack my hearing would come back but not fully. After every attack I'd lose more hearing, until I couldn't hear much at all (had Gentamicin op at that point which stopped the spins in left ear.

But,

(this is just my luck!)

six months later Meniere's started in right ear.

I don't get any warning though of attacks.

My partner, who also has MD, also has it in both ears. He lost most of his hearing in his good ear after one massive attack. He's now getting a hearing aid.

Just  a thought - my dad had lost 99% hearing in his right ear and about 90% in his left, but his hearing aid from the NHS worked miracles.

In fact it was me who couln't hear the TV!

14

If people can't "see" your illness, then your not sick.  I hate when people do that to me.  It still gets to me after all these years!   So I understand completely what you're saying.  The bathroom thing?  I'm lucky if I make it there.  We keep a bucket on my side of the bed because 99% of the time I don't make it.  I can't.  Having someone who truly understands in your life is a huge help and comfort.  People need to just say nothing if they have no idea what you're really dealing with.