Menieres Disease

Ears, nose and throat
1

Dear all

I am new to this group but have been reading your posts today.

I am a retired lady of 66 and have had the dreded Meniers  for the past 5 years.

I get all the symtoms that have been listed and take the medication that has also been listed.

My last attack was on the night of 18 sep this year.

We where on Holiday with friends in Wales and had gone out for the last night to a pub for a meal which i was looking forward to.

Just to show how fast an attack can come on

We entered the pub at 5 30 so we could have our meal before the rush started or so I had thought.

The Bar was busy even at that time.

A lot of chatter

I sat down and the chatter sound seemed to get louder and louder.

We gave our order .

Then very loud music began to play above my head from a speaker.

A lady started to raise her voice to be heard over the music..

This sound got trapped behind my ear drum and the pressure started..

I started to get very hot and tried to keep swalowing.

The bar man then turned off the bar lights and came around and lit a candell on the table

This flickerd in front of my eyes and i became very deaf .

To top it all i then had a plate of food put in front of me which seemed to grow on the plate.

I could not see in the dark or hear .

I had to leave my husband and friends at this point and return to our rented cottage before i became very sick  

The time by this time was only 6 pm 

I had to go direct to bed where i felt dredfull

I had spoilt our last night out

But us Meniers folk have no control do we?

A night out and I fear maybe the last one 

I cannot put myself again into a dark .noise filled situation again

In future lunch out during the day .set outside in the open air

Has this situation rung any bells I bet it has.

2

This rings lots of bells. The most silliest things start it off. My son does motorbike racing and I recently had a day at the Donington track with him. By mid afternoon, the noise of the engines revving and the sound of the bikes flying past had affected my balance. I had a headache and felt sick. Fortunately I got home before it was too bad and after sitting in a quiet room for a couple of hours, I was ok. This illness is certainly a pain

3

Oh Yes, many many times this has happened to me! You are not on your own. I am now taking 24mg betahistine 3 x day (since monday) and am still waiting for a consultant appt. I have been unwell with menieres for 17yrs now but this is the worst episode I have had. I cannot go to work and have had attacks nearly every day. I am just hoping this inc in meds may help?

4

I've had Meniere's for 2 1/2 years now. I usually go for about 5 months between episodes but recently I'm only managing about a month apart. I'm now on betahistine 16mg 3 x a day, a water tablet each morning, and the latest is diazepam to take when an attack comes on! After reading that you've had Meniere's for 17 years, can I ask how often/how badly you have suffered over the years? My doctors keep telling me it will burn itself out, but I must admit, I'm quite sceptical about the outcome!!

5

I sometimes find 2 paracetermol help.

Its the feeling sick which i cannot cope with

Do you find others do not understand .

and think maybe your putting it on ,which of course your not.

Who in there right mind would want to be like this.

Its a horrid thing to have 

6

I have read up loads over the years inc american sites. I was told the same but mine has come back even worse than when I had it 4 yrs ago. I managed over the years until Nov 2009 when I was admitted to hospital. The past 4 yrs have been bad although I did continue to work full-time. I have had time off work over the past 4 yrs, approx 3 months per yr. I had dizzy spells most days. It is awful....still keep hoping it will burn itself out! But not convinced it will after my experiences.

7

I do think this is one of thoise diseases that people DO NOT understand.....it is a hidden disease. I live with tinnitus and poor hearing, wearing 2 hearing aids now. My hearing is really bad but people do not understand. They cover their mouths or mumble.....I struggle even with hearing aids. I really struggle to use a phone.Even my family struggle to understand what it is like......I am determined not to let it rule my life though.

8

I am new to this group but I read you last comment with full understanding because I am in feel the same. Wear 2 hearing aids, one bad ear, other is worse, using the phone is hard, struggle to understand conversations and only do best one on one in a quite place. 

9

I have just come on board so forgive me if I have this in the wrong order.    Does anyone else suffer from hyperacusis to the extreme that they just cannot function 'normally' with more than one, possibly two people talking nearby?  For years and years I would hear my own voice 'outside of myself' e.g. in another part of the room.  Anyone had that?  

Went to an ENT specialist this week for a follow up and truly felt he was totally disinterested.  His clock was ticking just waiting for the next 10 minute patient. How can one explain anything in 10 mins? !  I have made a decision not to return.   After 9 years of Menieres I have stopped all medication (was on betahistine for little while) - gone on to all natural things and strict diet with lots of outdoor exercise - especially climbing hills for circulation. Also worked out my own neck/head/eye exercises that I do every morning.  Seems to be working!!  I'm told my Menieres has 'burnt out'.  Unfortunately this does not mean it has disappeared forever as we would all hope.  The tinnitus is still there for sure, and the ear pressure is not perfect, but no major vertigo attack for the last 13 months. May not be able to go out to dinner or stand in a noisy crowd but overall, life is not too bad right now.  Much much better than the incredibly difficult first 8 years.

So for all you fellow sufferers, don't give up hope as I almost did!

10

Dear cary 

I fore sure do get that horrid sensation of being out of my body in a  crowd situation .

I would be very interested in what pills you now take and the neck ,eyes  work out you do 

11

Well Jennifer, the only 'pills' I take daily in the morning are 1 x multi B vitamin, 3 x fish oil caps (1000), 1 x bio magnesium and 1 x Vitamin B12.   First thing in the morning I drink a cup of hot water with 1 - 2 tablespoons of organic apple cider vinegar to clear the system of phlegm (AMAZING STUFF), then a plate of porridge with 1/2 banana and then another cup of hot water with ORGANIC tumeric and cayenne pepper (about 1/4 tspn of each).  That is wonderful for circulation. I have eliminated bread from my diet completely and eat lots of veges and fruit from our garden................The exercises I have worked out that suit me are as follows. I do these as soon as I wake up;

Sitting on a chair, raise eyes to the ceiling then to the floor 10 x times, then move eyes left to right x 10 times (don't move head).   Next, stretch arm out and focus on one finger, bring it close to your face then extend far away again 10 x times.  Next, turn head (don't move rest of body with any of these exercises) to the left then to the right as far as possible 10 x times.  Next, put chin down to chest then extend head right back 10 x times.  I then close my eyes and shake my head from left to right 10 x times (but not extreme - just what is comfortable).   Sounds a lot I know, but its just a routine I have been doing for at least the last 12 months and have had no vertigo since.  

The ENT specialist advised me to try other 'extreme' exercises, which I duly followed for two weeks but they made me so much worse, hence I worked on finding my own 'remedy'.  I wish you well.  Caryl

12

Hi. Interesting to read your comments......I cannot stop the betahistine otherwise I have violent attacks??? I have been suffering again for the past 6 months after having menieres symptoms for 17 yrs but under control until this last bout. So poorly. Iam waiting to see a consultant. I try to cut out caffeine and salt from my diet, and very little bread (only wholemeal). I have always wondered if diet plays a role? 

I cant go to work. Do you work???

It really is awful at the moment.

13

Many thanks for all your infomation ,very interested in the apple vinegar 

14

Oh you poor thing.....I am convinced diet plays a HUGE part in Menieres, but that is only my personal view.  I have reached retirement age now however I had to give up work overnight when I was 58 due to the acute attacks and accompanying symptoms. I've often wondered how anyone could work whilst having the horrendous symptoms?  Always ended up in hospital and would take days to months to become semi- normal again. 

I so hope you can get relief soon.

 

15

Oh you poor thing.....I am convinced diet plays a HUGE part in Menieres, but that is only my personal view.  I have reached retirement age now however I had to give up work overnight when I was 58 due to the acute attacks and accompanying symptoms. I've often wondered how anyone could work whilst having the horrendous symptoms?  Always ended up in hospital and would take days to months to become semi- normal again. 

I so hope you can get relief soon.

 

16

I was working full-time but have been off over 6 months now.....pay reduced. I dont know if I can go back and do my job safely anymore...I was having awful spins at work. I drive with my job, have to use a computer and phone a lot...all of these are difficult now. Dont get me wrong,I loved my job, but would rather finish on a high than go back and not cope or just be ill again....it is very difficult. I have to do things slowly now. If I do too much or do something quickly ie bend or twist, I have a spin.I wear 2 hearing aids but my hearing varies day to day and the tinnitus is always there.

Very interested in your tactics inc the vinegar. I just want to be able to manage day to day better.

 

17

And I so hope you will soon be able to manage better.  Likewise, I used to barely be able to turn without having a spin. Daily for months and often in hospital with acute vertigo attacks.

Other things I have now also found of great benefit are:

a) continually becoming aware of any tension that may creep in to the body, particularly shoulders and stomach and then breathing deeply for a minute or so to simply relax again. I used to do a lot of yoga and appreciate the benefit of correct breathing. It's not until one starts becoming aware of how we actually hold our body e.g. in a 'tense' state to understand there is a very simple way to release that tension. The mind also then becomes more settled - less anxious.

b) Personally I am so convinced circulation plays a huge part in vertigo. As I may have mentioned earlier, every morning I make a concoction of organic tumeric and cayenne pepper in 1/2 cup fresh orange juice and warm water. This really gets the circulation pumping and as a bonus gives one so much for energy. I have slowly built up the strength of the cayenne.  Initially it was hard to drink but perserverance prevailed and I wouldn't go a day without it now.

c) as much exercise as possible

d) try your hardest not to let things stress you.

e) be strict with your diet -hard at first, but once again, becomes easier and easier.

The above are all basics really. Having always struggled with 'chemical medications' and having zero success with the medical profession, to me there was no option but to try alternatives.  Fortunately, it's worked incredibly well for me.  

One other thing that may be worth your while - get regular neck/shoulder massages if you can afford it.  Very beneficial.  Have you ever had your neck checked or xrayed?  Again, I believe some of my problems have been due to 'blockages' in the neck.

All the best.

 

18

Thanks for your reply. I value your info.

I do try and walk daily as I also think it is good to keep up some exercise!

I try and eat healthily-I have cut out extra salt and caffeine in my diet. I dont eat much bread, pastry etc (have a hiatus hernia anyway).

I have had back problems for years and have some degeneration in my spine C6/7 and also lower spine (due to the job I did). So I try to stay fit!

The spins started again last night whilst I was watching TV and doing a bit of knitting!!! They just happen at any time of day, depending what I am doing-so frustrating.

I will keep you posted.

19

Likewise I also have degeneration in C6/7.  Often my attacks would happen after having looked down for too long (for most people it's looking up) or concentrating too hard.  I am an artist.  Anyway, one other suggestion would be to do regular eye exercises daily.  All interconnected - retraining the brain.  Do keep me posted.

20

Yes, I have problems looking down. I cannot look at a computer/tablet/kindle screen for too long without it affecting me.

I do have eye exercises that I try to do regularly as well. Thanks for your support.