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Author Topic: MD, or not MD  (Read 20983 times)

Offline layla

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MD, or not MD
« on: Sep 30 2007, 09:24 PM »
Hi everyone,
I need a little bit of help.  I was diagnosed with md in April this year, i have all the classic symptoms, like vertigo, hearing dips, tinitus, visual problems, balance and walking problems and many other weird and wonderful things.  I went back to the ent specailist last week and he has now told me that it is not mens basically because i am not deaf yet, i did explain to him that this can take years and he said that he will monitor me until i lose my hearing then he will diagnose mens, he has however referred me to a neurologist who i am hoping will help me out.  I have had a few tests done, 2 hearing one balance and an mri  scan which was clear, i feel that this is not enough and i should have had more through test done to prove that it is mens,i explained to hime how i was feeling and how bad i get but he did not really care to be honest, i even wrote all my symptoms down on paper andhe did not want to know, he did not even take a look but i gave him the sheet anyway to keep in my file.  I hate feeling like this and it has ruined my life, i totally understand how all of you feel, this balance thing is a horrible thing and can be very scary too.

Sorry to moan, i just need a little advice on what to do next, my feelings are that this is md, but what can i do if i am not deaf yet.
Take care all and thanks for listening to my troubles.

layla
xxx :-*
a smile a day keeps the grumpy's at bay.

Offline Christina

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Re: MD, or not MD
« Reply #1 on: Sep 30 2007, 09:37 PM »
Well Layla, all I can tell you is that I have an atypical MD diagnosis precisely because I have never developed hearing loss in the 11 years I've been ill.  It may not be classical MD but variations do still come under the umbrella term of Meniere's Syndrome these days.  Sounds like your Consultant may be a little behind the times in his thinking.  You may get more sense from the neurologist you've been referred to. Of course your hearing loss may still develop as you've already told him.  Did he say what he is prepared to call it?

Sorry you're feeling bad about all this.
Regards
Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Lizzie

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Re: MD, or not MD
« Reply #2 on: Sep 30 2007, 09:46 PM »
Hi Layla

I'm sorry you're confused about all this.

All I can say is that I was diagnosed with MD before I had signs of hearing loss or tinnitus.  I was having such severe spins that I had an MRI and some very intense balance tests which lasted about 2 hours  - these showed that my balanced was 40% less than it should have been on my right hand side. That was two years ago and I have since developed all the other symptoms of MD.

It is really important to find a good consultant who has lots of experience of dealing with Meniere's sufferers.

Like Christina said, maybe the neurologist will be more understanding and experienced in recognising MD.

Hope it all goes well.
Liz

Offline layla

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Re: MD, or not MD
« Reply #3 on: Oct 01 2007, 07:59 PM »
Hi,
Thanks both for your reply's, i agree i feel that my consultant is behind the times with mens, but there is not a lot i can do about it what he says goes i suppose.  I have forgotten what it is like to be normal now, i do wish i was like i was before all of this, but i guess we all feel the same way?  I explained to him that i have mini spins also and that confused him, he could not understand this, and also that i am scared about walking on my own and driving, he said he could not do anything about that and that it was up to me, i feel that he just wanted to get rid.

The consultant has not diagnosed anything at all now, he just kept saying that he felt he did not want to diagnose mens, i told him his collegue said it was and he looked blankly at me  :(

I have so many symtoms and that is what i think has confused him.  I too have thought that it is mens syndrome.  Can you get fullness in both ears with mens as i got this a lot, almost every day, it can be very painful.. Do you think that my test where inadiquate?, i do, i feel that they have not done enough for me. I find this site a wonderful place as everyone knows how you feel, no one in my real world knows how bad this thing is apart from fellow suffers, so thanks everyone on this site for all the wonderful info..

take care all

xxxxxxx
a smile a day keeps the grumpy's at bay.

Offline Janet

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Re: MD, or not MD
« Reply #4 on: Oct 01 2007, 10:30 PM »
Hi Layla
Hang on in there i was told 3 years ago i had MD now they think i have MAV
{migrane assossiated vertigo} they are just not sure . I get the fullness in one ear and i get pain  is your pain like you have been out in a cold wind and the pain gets you just behind the ears like an ache .  :) i know its hard but keep your chin  :o
Best wishes janet

Offline Christina

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Re: MD, or not MD
« Reply #5 on: Oct 02 2007, 09:52 AM »
Hi Layla

As Janet has said it may be possible it's something called migraine associated vertigo which gives similar symptoms to MD but hearing loss is not progressive.  I'm not sure how long you've had these symptoms but hearing loss in MD may not develop for many years.  I think you need to think about dealing with the symptoms and not get too hung up on the diagnosis for now - I know that's hard.  As far as the tests go, I think you've had the standard battery - MRI, hearing & balance.  There's not much else they will do at this stage.  I know it's difficult to live with - all this going on and yet no clear explanation, unfortunately that's the reality of this type of condition.

At least he has agreed to refer you to another specialist who may be able to shed more light on the migraine associated vertigo angle. 

Keep your chin up.

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

Offline Dizzykitty

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Re: MD, or not MD
« Reply #6 on: Oct 02 2007, 04:53 PM »
Hi - I had an ent that wouldnt diagnose without hearing loss. Of course we all know that long term hearing loss is a classic symptom of MD (thats what all the books say) but hearing can dip and return to normal during attacks so one audiogram may well not pick up on that. I did also wait for the neurologist appointment which was a complete waste of time.

Ask for a second opinion, you are entitled to do so. If he doesnt seem interested in you and doesnt appear to be that up to date then you absolutely have a right to challenge it. As menieres is not diagnosed through a specific test, sometimes it is subjective when not every symptom is there. Some people seem to spend years waiting for a diagnosis.
I have now sat down with my GP and told her that the months of waiting to see the right person was a complete waste of time and that if she had anyone else that came along like me to refer them directly to a specialist balance clinic/centre.

Its an interesting point on whether getting a diagnosis is a good or bad thing. For me its been the right thing. Whilst I am not overjoyed to have the condition, spending two years in limbo, wondering if I was going insane and what I was doing to make myself worse was a bad time for me. I have felt more in control since diagnosis and certainly more validated on feeling ill. i often felt that I wasnt actually believed in my symptoms.

Go back to your GP and ask to see another ent in the area. The menieres society apparently does a list of those that specialise in it for each area so it might be worth contacting them to see if they could suggest someone more approachable and sympathetic.

Offline Christina

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Re: MD, or not MD
« Reply #7 on: Oct 02 2007, 06:33 PM »
As someone who's not had a clear cut diagnosis in 11 years, I do know how hard it can be not to get one.  However, I do know I've got a balance problem - probably a variant of MD or maybe MAV.  I usually tell others I've got atypical MD so that they may at least understand some of what's going on.  However there is so little understanding of MD generally that I don't know how much difference it makes.  I spent years feeling like a fraud because I wasn't sure what was going on - over the years I've come to terms with it.  My symptoms are pretty similar to everyone else's on this forum except for the hearing loss.  It is useful to be able to call it a recognisable illness and sure there are treatments once you have the diagnosis.  I've never been offered anything except 'go away and live with it' - you don't have hearing loss, we don't want to take the risk of surgery or anything else with you. 

So for me there isn't much light at the end of the tunnel as far as a cure or any treatment is concerned and I spent years searching for the answers and making myself v. unhappy. It's hard, but if you never get a diagnosis you must find a way to carry on and hope as time goes by, the medics will learn a bit more about what causes these symptoms.

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

Offline layla

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Re: MD, or not MD
« Reply #8 on: Oct 02 2007, 09:38 PM »
Hi All,
Thanks so much for your support, it is good to get other people's experiences with living and also trying to get a diagnosis.  I have had this for a year now, it isn't long i know but it seems like an eternity for me.  My main problem is that i had a diagnosis from one consultant and yet the other one said he refuses to give me the same diagnosis.  I do lose my hearing, it can happen a few times a day, this is followed by a loud blast of tinitus, then all goes back to normal apart from the never ending balance and coordination difficulties i have, i also get blurred vision, memory problems, fatigue and sleepness nights due to the loud constant ringing in my right ear, that is somthing that has been with me for about 3 or 4 months now, before then it was just the odd blast along with the hearing dips.  My balance test was just standing with my eyes open then closed nothing more and i have always thoguth that was not enough as i know there are other tests available, i now sound like i am winging but i am frustrated more than anything else as i did come to terms with with i had my diagnosis, like Chris i feel i am a fraud as i have now had to tell people that i do not have mens and they look at me as if to say well what is it then.   I feel so sorry for all of you that has had mens for years, it is a horrible condition and no one really understands how you feel except you!!!

I hope that i will gain a lot of information and also friends from this site, it is a life line for me as on here i get the support that i need and if i can help others it will help me to get on with my life also.  I am 37 and some days i feel like i am 77.  I have 2 jobs at the moment one is full time and the other one is as a part time care assistant, this does worry me as i would hate anything to happen while i was looking after my residents, but it has been hard to explain to the home what i go throgu as i look so normal and also i need both of my jobs to live and would not know how to live without the money.

I did ask the consultant what to do about informing my work and he said just tell them, i said that they would need a diagnosis to help me and he said that he could not really help with explaining about my condition and that it was up to me to explain, in a nutshell he was useless, but atleast i get to see someone else so lets see.

Has anyone else had a problem with telling work and how do you get the help you need without a diagnosis.

Take care all, i promise i am more fun than this, i am not always so gloomy :o

xxxxxxxxxxxxxxxxx
a smile a day keeps the grumpy's at bay.

Offline Christina

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Re: MD, or not MD
« Reply #9 on: Oct 02 2007, 09:58 PM »
Hi Layla

Just tell people it's MD - it sounds like you 99% have it anyway and this is what your first consultant said so it's not a lie.  Just because this latest one hasn't concurred, don't let him cause you such a lot of grief and angst over it.  Until you've been definitely told it's something else, carry on with the MD diagnosis.  No-one's going to be able to challenge it since generally speaking most people don't have a clue what it is anyway.  As far as work is concerned just say the same - the medics can't be 100% certain, but it's looking like MD and just leave it at that.

I receive DLA and each time I complete my forms I say atypical MD. They are not really interested in what it's called - they just want to know how it affects your daily life. 

Take care
Chris

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

Offline Dizzykitty

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Re: MD, or not MD
« Reply #10 on: Oct 03 2007, 03:30 PM »
Layla,
My consultant has offered to talk to everyone if necessary includes my work insurance company so him not being able to help you really is a load of rubbish.
I strongly suggest that you find yourself a different consultant if you can.
It wont cure you but at least you will have some kind of support when you need it.
DK

Offline layla

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Re: MD, or not MD
« Reply #11 on: Oct 03 2007, 04:03 PM »
Thanks Chris and DK, you have been very helpful...  I sound like such a miserable git, but it is only this thing that is making me this way.  I think that most people have been through similar things to me and it is up to us to get on with it and deal with it the best way we can, so it is onwards and upwards for me from now on.

Someone asked me what my ear pressure felt like, i forget who so appoligies for that.  My ear pressure is similar to when you take off in an air craft or come down from a high hill, i have tried blowing my nose but that never seems to clear it, the funny thing is i seem to have this most of the time now.  I had a strange thing happen to me yesterday and wondered if anyone else had had the same?  My hearing went really odd i heard everything in an echo and i could hear the mechanics banging metal and that sounding so, so strange like speacial effects, sorry i cannot explain it fully but it was weird and freaked me out some what.  I also have problems with things sounding like they are under water, anyone else get that, and also wet ears, my eras feel so wet at times i was wondering if that is the fliud clearing out from my ears??

I feel for everyone on here and i realise that i am lucky as i do not have it as tough as some of you. Chris i think you are right, i am going to say it is mens as that i was think it is anyway, it will make life a little easier than trying to explain what it is, i am thinking of joining the mens society also.

Take care all

xxxxxxxxxxxx :-*
a smile a day keeps the grumpy's at bay.

Offline Janet

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Re: MD, or not MD
« Reply #12 on: Oct 03 2007, 07:13 PM »
Hi Layla
Glad you are feeling more positive to day i joined the md society they send you a great pakage im still reading mine it gives friends and familly a good prospective of what md is all about my husband joined me the only thing was he put his name instead of mine lol  ::) {MEN} any way take care
best wishes
 Janet

Offline layla

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Re: MD, or not MD
« Reply #13 on: Oct 03 2007, 09:18 PM »
Hi Janet, Thanks for that i am going to join a.s.ap, lol about your husband, that is something mine would do too.  It is good to know that he cares about you, mine gets frustrated with it all, he had a go at the consultant, it is quite funny nowl looking back at it but not so much fun at the time, he means well bless him and i would be lost without him.

Take care

xx
a smile a day keeps the grumpy's at bay.

Offline Christina

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Re: MD, or not MD
« Reply #14 on: Oct 03 2007, 10:27 PM »
Hi Layla

Glad to hear you're feeling more positive.  It's still very early days for you and you're still coming to terms with this illness and what it means and you're right it's very confusing when one says one thing and then you get something different from another doctor.  You will find your way to handle this, of that I'm sure.  It's taken me years to get to grips with mine and I still slip back from time to time. 

Your husband sounds like he's very supportive - very important to help you stay positive. 

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

Offline layla

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Re: MD, or not MD
« Reply #15 on: Oct 04 2007, 08:54 PM »
Hi Chris,
I sat and thought about it the the other night and i realised that i do have to geton with things, it is hard sometimes but you all know what that feels like.  I have recentley changed jobs and im a lot less stressed than i was before, my other job was a nightmare and i was highly stressed everyday, they gave me no support what so ever in fact they did not want to know about it, all they did was stop me driving their cars but that did not bother me much.  I have explained to my boss at my new job and he says that as long as they know what to do if i get ill they are ok with it, my only real problem is the phone i cannot hear properly and this is annoying, but i will manange to blag it  lol.

On my first ent visit they did say that i had some lower tone hearing loss and the last visit in April they said there was no change, does this signify the start of hearing loss?

My husband is fab i would be lost without him he is my rock and i am very lucky to have him in my life.

You seem to be very positive and that is nice to see, it is hard for us to be bright all the time as this does get us down at times, do you drive?  if so how do you manage?, i find that i look less in my mirror than before it is like it is harder to concentrate at times.

Take care Chris hope to speak again soon.

xxxxxxx
a smile a day keeps the grumpy's at bay.

ManiloonySally

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Re: MD, or not MD
« Reply #16 on: Oct 04 2007, 09:15 PM »
I did eventually get the MD diagnosis, but to be honest i still struggle, as most people have never heard of it, or people look at me and think " oh she looks ok"  or say " yes i get a bit dizzy" so i just give up trying to explain!  I get frustrated, i should have had an important meeting today, but had an MD attack and had to phone at the last minute to cancel, luckily this person is very understanding, i went straight to bed but not one person in my family could care less, so i just keep it to myself now and say nothing.... its so so frustrating  :o

Sally

Offline Christina

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Re: MD, or not MD
« Reply #17 on: Oct 05 2007, 08:57 AM »
Hi Layla

It does sound like the start of hearing loss I must admit, if it's not coming back up to normal between attacks.  You could ask work if they would consider getting an amplifier for the handset to help you with phone calls.  I'm not bright all the time believe me - it's just experience that gets me through most of it these days.  I know the situation always changes - if I'm in a bad patch it can last several weeks or months, but I know things will eventually improve a bit and I'll have a better phase.  I do still drive but only short distances and never on motorways.  There's too much going on on motorways for me to cope with the pace of the traffic.  I also never drive on days when I know I can't so it works Ok & I've never had an attack behind the wheel but I do get short warnings - enough to allow me to pull over.

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

Offline layla

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Re: MD, or not MD
« Reply #18 on: Oct 09 2007, 06:44 PM »
Hi Chris and Sally, thanks again for the reply's, it is so good to speak to others who know only too well how it feels to be like this. I am having a bad day today and cannot speak correctly, it is almost like i have a stutter i am also very off balance and my brain is not connecting with my legs, does anyone else get bouncy legs? My legs sometmes feel like jelly and also bounce if that makes sense, my hearing is also a bit funny today like an on off blocked feeling but not the same as the ear pressure.  I think i hace got this way as i have not been sleeping too well and working too much also, think i need a rest.

I will ask my work about an amplifier thanks for that it is good advice.  How do these work?  Has anyone used the tinnitus blockers, they are like an hearing aid but drwon out the ringing?

Take care al and please excuse any spelling mistakes, that also suffers when i am like this, do you think i am having a bit of an attack?
xxxxxxxxxxxxxxx
a smile a day keeps the grumpy's at bay.

Offline Christina

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Re: MD, or not MD
« Reply #19 on: Oct 09 2007, 08:06 PM »
Hi Layla

Sounds like you've got the dreaded brain fog going on - very common with us sufferers believe me!  I often struggle to find the right words for things and get words round the wrong way in sentences.  I do have trouble with my legs some days - I'm having problems today funnily.  My head, my eyes and my neck muscles don't seem to co-ordinate with my legs leaving me feeling quite disjointed and unco-ordinated.  There are so many variations and so much weirdness to this illness, I'm sure people wouldn't believe us if we told them half of it!

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

Offline layla

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Re: MD, or not MD
« Reply #20 on: Oct 10 2007, 12:08 PM »
Hi Chris,
I agree with ou about people not believing us.  My old work were terrible for it,  i worked with 2 horrible women both disliked me and i don't know why, i am funny and very happy ans always got my work done, when i told them about my condition they both scoffed, adn made comments to each other about it being made up etc, they made my life hell and gave me no help at all, in fact they made my condition much worse as i was stressed out everyday due to them.  I am in a new job now and do feel a little better than befoer.  Oh i hate the dreaded brian fog, isn't it just awful, my eyes go  blurry and all sorts of strange things happen. I feel for you having suffered for so long, you deserve a medal.  I asked my friend who has ms about getting dla, she said go for it, do you think i could stand a chance?

Take care, sorry if i have been going on, i will get there eventually.

Take care
x
a smile a day keeps the grumpy's at bay.

Offline Gibson335

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Re: MD, or not MD
« Reply #21 on: Oct 10 2007, 12:32 PM »
Hi, Layla

You sound just like so many of us when we were first diagnosed (or not!). Joining the Meniere's Society was great for me, because I requested all the leaflets and what I read in those more than made up for the inadequate treatment I'd received from various consultants. Were it not for them and this site, I'm not sure how I would have coped.

At the same hospital I must have seen about 7 or 8 'consultants' - though only 2 of them have been genuine consultants. Each have varying degrees of knowledge/empathy related to MD, ranging from complete ignorance to complete indifference. I had a new one just last week check out my grommet, and testing him I asked him about the connection between movement of the neck and MD (accepted by all experts, including one of the top guys at the Balance retraining clinic in Licester) and he said he saw no link between the two!!!

I needed the diagnosis because my employers began to take proceedings against me for time off, so the diagnosis was useful when it came to the DDA. But no one other than a fellow MD sufferer can truly appreciate what you're going through, because it's not as if you have a shaved head or a cast on your leg.  The closest I've ever had to empathy was from a colleague who once had Labyrinthitis which laid her low for 2 weeks, and she admitted afterwards that both experiencing that and not knowing when you might must be awful.

I too have the 'jelly legs' - it's as if you're walking on sponges - and that can be great fun. I was stopped by a traffic cop once as I got into my car...he'd spotted me walking to it and assumed I was drunk.  He was fine when I showed him my MD card from the Society, but I know that other people have looked at me with suspicion in the past.

Hope all goes well for you - having an understanding partner is more of a break than you will ever know.

Best wishes.

Tony
I intend to live forever...so far so good.

Offline Christina

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Re: MD, or not MD
« Reply #22 on: Oct 10 2007, 12:42 PM »
Hi Layla

Indeed you should try for DLA. It's not easy to get it these days.  There are some other posts on this website which will be useful if you do decide to apply.  As long as you've had the illness for at least 3 months and are likely to have it for at least another 6, you can definitely apply. It doesn't matter that you haven't got a definite diagnosis since the Decision maker is more interested in how the illness affects you on a daily basis.  However having said that, they do like to know you're in touch with a consultant and what meds you're on.  Be sure you say what you're like on  your worst days and don't play the illness down. 

Looking back to what you say about your work colleagues - aren't people horrible, makes me wish bad things for them!

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

Offline allanander

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Re: MD, or not MD
« Reply #23 on: Oct 10 2007, 09:24 PM »
Hi Layla,

I was diagnosed with MD despite not having as severe symptoms as some people on the forum. It seems to me its whether you see a consultant who knows what he is doing or see one who doesn't and how they interpret the symptoms. I've just accepted that MD is something I've got to deal with and live with. Like you the tinnitus drives me crazy at night. I have bought a pillow speaker and have the radio by the bed just out of tune. It seems to help with the tinnitus. When it really gets me down i take a Nytol tablet to help sleep. This might not help you but it may be worth trying. All the best

Allan

Offline layla

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Re: MD, or not MD
« Reply #24 on: Oct 10 2007, 10:34 PM »
Hi All,
Wow, this disease is horrid isn't it? and it seems to me that none of us get the help we need, especially when it comes to getting a diagnosis.  I feel so sorry for the ones that have had it for years and still have had no real confirmation of an actual illness.  I totally get it now with ref to bad consultants, i read about other people before but now i realise that it is what happens to most of us, my husband was so annoyed with mine, he got quite angry with him and pointed out that it was me that was suffering and not him.  I asked mine if he showered everyday and he said yes, i said do you get scared in the shower and he laughed at me as if that is funny, i do hope i don't see him again.  The other one i saw who gave me the diagnosis said yes you have md, you will have it forever and there is nothing we can do, i went home with no information and no help, it felt like hell at the time and it did get me down. I am coping ok with it now, i think we come to terms with it knowing that it is for life and so we make the best of our good days.

I am a little worried about my new employers as i have told them but i am not sure they understand, and if they ask for a letter, the hospital yet again are going to state that i do not have mens and again i bet i will get no help.

I am glad that someone understands the old jelly legs, it is funny isn't it?  I have often wondered what would happen if i got stopped by  the police and now i know so thanks.

Yes work collegues can be horrid and have no understanding what so ever, i had to go up 2 flights of stairs about 20 times a day and yet there was a spare office downstairs and they still would not move me so i gave up i the end.   I used to try and explain that it was the same feeling as when you have had too much to drink, but like others say, if you are not wearing a leg cast or have blood on you everyone thinks you are making it up.

Thank goodness for this site, it is so wonderful to speak to all of you and i know that you understand what i am rambling on about.  My husband is brillinat but even he does not quite understand what it is like bless him.

Thanks Chris for your comments about the dla i will try and sort it out asap, i have been like this for just over a year now so hopefully i will be accepted fingers crossed.


Just another question, does anyone get a swirling, vertigo feeling  when they close their eyes at night?  i get this every night and it spooks me and i always think here we go i am going to have a full on attack.  I don;t het the feeling when i am turning over at night or anything like that, just when i just get into bed and start to relax with my eyes closed.

I will try the radio at night that sounds like a good idea, it drives you mad doesn't it?  i lie there for ages listening to it then the pulsating starts and i hate that noise, i also get fluttering noises to.  I have thought about taking Nytol i think i will get some as i am getting very tired in the day and it makes the condition worse.

Well i am off to bed now, i have just finished a short shift at the home, working there makes me feel lucky some of our residents are so poorly, it puts your own life into perspective.

Take care everyone and thanks again for all your advice.

XXXXXX
a smile a day keeps the grumpy's at bay.

barbara

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Re: MD, or not MD
« Reply #25 on: Oct 11 2007, 07:51 AM »
Hi Layla,
If you click on Forum and then go into frequently asked questions you will find an article by Alec Salt. We are allowed to copy this and it can be of use for explaining to work colleagues and for putting in with DLA applications.

I too was told to go away and live with the problems but things can be improved by a good consultant so don't accept this. There are no 'miracles' as we well know but some help and understanding is better than nothing.

Offline Christina

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Re: MD, or not MD
« Reply #26 on: Oct 11 2007, 09:08 AM »
Hi Layla

Your employers do have to be sympathetic to your needs, if they don't they are breaking the law under the Disability Discrimination Act.  It sounds like your previous employers hadn't heard about that! 

Anyway, as for a spinning feeling when you lie down at night, I experience that too - pretty much every time I lie down.  It feels as if the room is spinning but when your eyes are open it settles down. I think it's because we rely so much on visual cues that when they aren't there the brain thinks we're spinning.  Mine usually settles after several minutes & I've wondered over the years if it's also to do with being horizontal - stimulating that particular semi-circular canal.

I do go through patches where I spin when I turn over in bed but that's to do with positional vertigo I think - debris in the inner ear canals which some people with MD also suffer from. 

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

Offline Gibson335

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Re: MD, or not MD
« Reply #27 on: Oct 11 2007, 04:13 PM »
Layla...

I often get those dreaded night spins when I close my eyes. I take sleeping pills and have done for quite some time now...it's not a natural sleep, but without them I simply can't switch off (always been a bit of an insomniac, so not just down to MD!).

I have a nice radio/alarm that also plays relaxing sounds, like waves coming in to shore. You can time it so it goes off automatically, and it gets quieter the closer it gets to switch off. It's a brilliant device and really helps when the tinnitus is at its worst.  I got it from the RNID, and it's worth a try if you struggle at night.

As for your employers, as I've written before, I've had that struggle for a couple of years now, but in the end because I can do much of my job from home they ended up having to allow me to work from home up to 2 days a week. They pushed hard, but I pushed harder back. The DDA is a powerful weapon, and could have helped you in your battle to get an office on the ground floor. That's also worth checking out (all about your employers having to make 'reasonable' adjustments to cater for your illness.

Good luck and take care all.
I intend to live forever...so far so good.

ManiloonySally

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Re: MD, or not MD
« Reply #28 on: Oct 11 2007, 08:33 PM »
I also get the night spins, i hate them, i can feel the room spinning and quickly open my eyes, i hate it!

As for stupid people, i wanted to to a short flight to ireland, but i really hate flying so asked someone what they thought, their reply was "Have you thought about a ferry?"  i get so frustrated by remarks like that, i suppose i could go on one, but frankly with the way i am on land, i wouldnt dream of it, people are so flipant!

Sally

Offline Christina

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Re: MD, or not MD
« Reply #29 on: Oct 12 2007, 08:55 AM »
Hi Sally

I have been on cross Channel ferries and once to Ireland since I've been diagnosed.  Not a nice experience but I booked a cabin and just lay down the entire time.  I couldn't walk around the boat like the others and spent most of the time with a headache and feeling sick. I was lucky that it was pretty calm each time - would have been much worse if not.  I never was the best on sea even before this but it wasn't so awful that I wouldn't do it again - but it would be reluctantly.  I'm still finding the courage to take a flight - it's something I must do sometime I feel - I get quite a lot of comments from my family to try it - it's just being brave enough.

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

Offline Elaine

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Re: MD, or not MD
« Reply #30 on: Oct 12 2007, 10:32 AM »
I've done the Dover Calais ferry several times since being diagnosed .I sit up top in the fresh air and it is fine but if I venture down inside to the shop I start to feel sick  :'(
I've not flown since  :-\
Elaine xx

Lizzie

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Re: MD, or not MD
« Reply #31 on: Oct 12 2007, 11:02 AM »
Hi

Like others on here I hate flying - I get in a real panic and just can't relax. I did manage to get to America 7 years ago so that was a real achievement.

I do enjoy going on boats though - it is very strange.  I have been on several cruises and haven't found being on the water for 7-10 days a problem.  I recently went to Norway and on day 2 there was a force 9 gale which lasted most of the night - very very rough indeed - but I was ok, no worse than anybody else.  It was actually good to feel wobbly knowing that everybody else was too  ;).

Liz

Offline Dizzykitty

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Re: MD, or not MD
« Reply #32 on: Oct 12 2007, 01:38 PM »
oh thats weird - I dont have a problem with flying particularly. I have only flown once since it started but a 10 hour flight and had no particular ill affects, whereas going on the ferry completely screwed me up for days after only a few hours.
Hated it and will never step foot on one again. I had to remain perfectly still for the four hours in a chair, not look outside at all and keep my eyes closed as much as possible and take sickness tablets. It was the only way to get through it without being violently ill.
Incidentally, never had a problem on boats or any kind of travel sickness previous to menieres so definately a menieres thing for me.

Offline layla

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Re: MD, or not MD
« Reply #33 on: Oct 12 2007, 06:42 PM »
Hi All,
Wow, thank you all so much for the wonderful feed back i am now begining to feel not so alone anymore.  I find it interesting that we all have similar symptoms i.e night spins etc and yet this is not supposed to be the norm for md, or is it?  I really dislike the night spins, they scare me so much, it is such a horrible feeling and that along with the ringing in my ears doesn't help me to relax at all.

I am going to invest in the radio somone mentioned, forgive me for forgetting who it was :-\ that sounds brilliant!!

Oh god my old work were totally useless, is there something i could do now about the fact that they did not help me at all? i have a disaplinary  action going on agianst them for not dealing with the horrid girls in the office they had nasty attitudes and caused arguments all the time.

We have all had so much to deal with on this site, bad work collegues, bad consultants and generally trying to cope with this on our own, how do we do it??

I will take a look at the dla page, thanks for the Chris.  I think my new work will help me out they all seem a nice bunch of people, one salesman said to me the other day that if i neede any help what so ever just shout and he will be there for me, i thought that was so sweet as i have not experienced understanding people yet.

I feel very odd today, my head feels thick and quite swimmy if that makes sense?

I went on holiday earler this year to Crete and i was so worked up about going on the plane as i had read and heard so many stories, but the flight was fine and on the whole i was ok.  The only problem i had was painful ears they really did hurt but after a while i got used to it.  I would say that if anyone wants to go on holiday on a plane go for it, just make sure that you have your tablets at hand in case your feel a bit sick,but don't be scared, or even let this horrid condition stop you from enjoying yourselves.

Does anyone on here still drink?? I have found that i cannot drink now as it makes me real quick is this the same for you all?

Hope i have made sense ;) Take care all.

xxxxxxxxxxx
a smile a day keeps the grumpy's at bay.

Offline Christina

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Re: MD, or not MD
« Reply #34 on: Oct 12 2007, 07:19 PM »
Just a small amount of alcohol makes me much dizzier these days, so I tend to avoid altogether.  However I do miss the occasional glass. I know some people seem to be able to manage the odd drink but I must be very sensitive because only half a glass of wine affects me very quickly!  A Harry Met Sally moment I guess!!lol!

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

Lizzie

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Re: MD, or not MD
« Reply #35 on: Oct 12 2007, 08:02 PM »
Hi Layla

Yes, I still enjoy a glass or two.  I'm actually drinking a glass of wine at the moment, I'm fortunate in that it doesn't seem to affect me.  I don't obviously go mad - but occasionally I over indulge  ;).

Liz

ManiloonySally

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Re: MD, or not MD
« Reply #36 on: Oct 12 2007, 10:33 PM »
Hi Chris

Ughh  after what you said, i dont think i dare risk the ferry, i used to take seacat from Scotland to Belfast, i would never do that now!!  I should fly, its only 50 mins, but i am just a baby when it comes to flying, i am just scared, nothing to do with menieres, i just hate flying, so much for my fear of flying course i did LOL  :D

Sally :)

Offline Christina

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Re: MD, or not MD
« Reply #37 on: Oct 13 2007, 09:30 AM »
Hi Sally

Those Seacats seem much worse then ferries to me! I went on one once before MD and that was enough!
I've promised my family I will take a flight next year - I keep putting it off and hoping they'll forget about it - no such luck.  I will do it - I just have to be in the right frame of mind and have contingency plans

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

Offline Janet

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Re: MD, or not MD
« Reply #38 on: Oct 13 2007, 10:33 AM »
Hi all
I have to say i went to scotland for a week and had a great time i wasnt ill once no spinning no balance problems i was out every day walking and even drinking lager or wine i was fine the only propblem was the train on the way there the new virgin trains i stood up while it was moveing and i went dizzy so i had to take a cinnerizine apart from that perfect holl now that im home ive been awfull of balance all the time if i move my head to the left i get dizzy . {Chris try lemonade in your wine if you drink white} it works for me .
best wishes to all
 Janet

Offline Dizzykitty

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Re: MD, or not MD
« Reply #39 on: Oct 14 2007, 02:51 PM »
Hi - I still drink though am more careful than I used to be as have no idea how I will react.
Red wine used to make me really bad but a couple of glasses is fine.
Its not really when i drink that I have a problem, in fact I sometimes find that it makes balance easier? work that one out, its the following day. I am a one glass and have a hangover kind of girl, always have been. So mix that up with tiredness and dizziness, you can imagine.
I had a good social life though and have found ways of not having to miss out on that too much but always have to take my husband or best friend with me just in case!

Offline Christina

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Re: MD, or not MD
« Reply #40 on: Oct 14 2007, 06:25 PM »
Hi Dizzykitty

As alcohol changes the chemical structure of the fluid in the inner ear - causing dizziness in most people if they drink enough - I guess that if you already have damage, alcohol could work the other way - making your balance feel temporarily better.  I have had occasions when alcohol has worked that way for me but then like you, feel much worse the next day.  Maybe the answer is to have a small amount of alcohol in your system all the time - just enough to make the balance feel better (this is not a serious suggestion lol!).

Thanks for the tip Janet, I will bear that in mind!

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

Offline layla

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Re: MD, or not MD
« Reply #41 on: Oct 14 2007, 07:34 PM »
Hi all,
Urgh, i cannot drink at all these days, just the thought of it makes me feel ill.  The lasttime i drank was on new years eve and i had a couple of glasses of wine and one champers, gosh i felt really bad and i was all over the place, i went to bed and thought id had about 10 pints, i had a full on room spin it was awful.  I have stopped drinking now as i am scared, i don't miss it that muchto be honest, i like my cups of tea these days, it will be a pipe and slippers for me next  lol.

I have not tried to go on a ferry since having this problem i cannot imagine how i would manage as i have sea legs most days.

Im off for a cuppa now, speak to you all soon, cheers to anyone having a glass ;D

xx
a smile a day keeps the grumpy's at bay.

Lizzie

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Re: MD, or not MD
« Reply #42 on: Oct 14 2007, 09:43 PM »
Hi

It was interesting reading what others have said about alcohol.  I'm not fussed about it really, but I do find that a glass of wine actually makes me feel more balanced (sometimes).

Very odd  ??? ???

Liz

ManiloonySally

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Re: MD, or not MD
« Reply #43 on: Oct 15 2007, 09:33 AM »
I cant really add anything as i am a boring non drinker  :-\  I also love my cups of tea, but was told to only have caffeine free which i find revolting,anyone found a good caffeine free tea?

Sally  ::)

Offline Christina

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Re: MD, or not MD
« Reply #44 on: Oct 15 2007, 10:01 AM »

Hi Sally

Can't say I've ever been what you'd call a 'drinker' either.  Only used to have the odd glass on high days and holidays - not like my husband who drinks several glasses of wine almost every day!  I've always found I have just as good a time without the alcohol (sometimes better) so it's not really an issue I think about a lot.   Don't know how some people manage to drink every day - I'd be wrecked 24/7!!

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

Offline Dizzykitty

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Re: MD, or not MD
« Reply #45 on: Oct 15 2007, 02:08 PM »
hmm the suggestion of having a small amount of alcohol in the blood at all times, maybe thats the answer....
goodness I hope I'm not a serious drinker! I certainly dont drink every day only socially so every couple of weeks. I am not the type of person to need a drink after a long day.
Sally - I have tetley decaf and found its fine. took a while to get used to it but now full caff seems really strong

ManiloonySally

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Re: MD, or not MD
« Reply #46 on: Oct 15 2007, 07:04 PM »
Will definitely try that, i have yorkshire decaf at the mo and it's not the best... i do miss my nice cups of tea  :(

Sally :)

Lizzie

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Re: MD, or not MD
« Reply #47 on: Oct 15 2007, 08:22 PM »
Hi

I was advised to drink decaf tea and coffee - I recommend Tetley decaf tea, not bad once you get used to it.  I have to confess however, that I do enjoy real coffee and drink a couple of cups a day (not always decaf).   I refuse to give up everything that I like  :D!


Liz

Offline layla

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Re: MD, or not MD
« Reply #48 on: Oct 15 2007, 09:08 PM »
I am a bad gal as i still drink my tea and coffee, in fact i drink more coffee than i used to as it is easier to make at my new job, we don't have a fridge so itake coffee mate.  I know that i drink too much but i did used to drink herbal tea instead and i found that i still felt the same so i resorted back to my wicked ways  :P  I would like to try a good decaf coffee, any suggestions on a good make as i like my coffee strong.

Has anyone tried any herbal remedies at all? I have heard lots of stories about taking Ginko Biloba and St Johns Wort etc.

I felt awful yesterday and i had to do a shift at the home, my legs were very spongy and wobbly don't know how i managed.  My residents did my head in a bit and i do love them dearly, i guess there is only so much moaning a person can take when you don't feel well, and the constant i am old you know, you don't know how lucky you are, bless them if only they knew that i am not well at all chuckle..

xxx
a smile a day keeps the grumpy's at bay.

ManiloonySally

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Re: MD, or not MD
« Reply #49 on: Oct 15 2007, 09:45 PM »
Layla

I have Kenco decaf,,, cant remember the actual name, but it has a green label, its called superior or something, i think its good, quite strong and doesnt taste like decaf to me, but have to admit i am more a tea drinker, i rarely drink coffee, typical i can find a coffee i like, need to find tea... not that i drink much of it so may aswell drink ordinary if it makes little difference  ;) i live on pomegrante juice LOL!!

Sally :)