menieres disease

does anyone else feels worthless due to the debilitating effects of menieres disease. i have balance issues and i feel i would die due to this and it is really affecting my daily activities. i get strong panic attacks.

[wobblybee Administrator Pioneer]

I can empathise with you..I don’t have the same diagnosis but I do cope with Vestibular issues….I agree the disorientation can be horrendous.

There has been mention of Menieres on other Healthunlocked groups.

Top right of this page is a SEARCHBOX …type in Menieres Disease to see the links.

🙂 And if you’re on Facebook…you can find Menieres Support Groups on there.

Plus..I’m a member of Vestibular Facebook Groups..I’ve seen mention there.

[Hidden in reply to wobblybee]

thanks for your reply

[Hidden]

I hear you, I have used the NHS talking therapy services to help with those feelings but I feel vulnerable all the time. My balance isn't good and I'm fearful of hurting myself when I walk. I've seen people recommend walking sticks, but I don't have the energy to look for any.

[Hidden in reply to Hidden]

i face a similar issue and im not ready to use walking sticks either.

[Rotti57]

So sorry that you have this and how it is affecting you. I get vertigo every now and then. I usually don't do very much, but recently, I have found that walking really helps me. I decided to take it up a knotch and run carefully. However this was not a good idea. My knees suffered through my instability. I thought I was okay. I wasn't swaying or having difficulties but obviously my body was feeling the strain. I am now concentrating on core and lower body strength and I probably won't run with vertigo until I feel my body is strong enough. Best wishes for a good recovery

[MoonStar57]

I’ve had Menere’s since i was 13 years old. It started with the usual vertigo, vomiting … then around 20years old or so it stopped and I was symptom free for about 40 years. It came back much worse! I now don’t have balance, cannot walk without a cane soon to be transferred to a walker! I cannot do as much as before … it sucks.

[CofG]

Hi Hidden, do you have hearing loss too? I was diagnosed with Meniere's in 2019 when I had a big episode and my hearing got so much worse. Since then I suffer with dizziness and almost vertigo sometimes and my hearing is so blocked, my hearing aid doesn't do anything anymore. Are you menopausal? As I feel in my case, it's hormonal

[Hidden in reply to CofG]

I'm beginning to see the connection I was diagnosed with meniers in 2020 but now I'm definitely perimenopausal and I wonder if that was my first symptom after all.

[MoyB]

Hi! I was cruising through trying to find a Menieres group on here and came accross your post.

I've had Menieres diagnosed since 1996, but remember having a single attack in the middle of the night around about 1989 when I was 38. I blamed it on Sudafed as I had taken some for my hay fever. Later that year I had bad tinnitus and also felt stuffed up. The GP I saw then thought I had possibly got a sinus infection and gave me Doxycycline to take as I was going away for a week. It made no difference. The tinnitus continued.

Vertigo didn't follow until 1996 when it hit me out of the blue while I was having a professional phone conversation. I remember I handed my phone to a colleague and staggered to the loo where I was violently sick. My husband got a lift from someone and came to pick up me and my car and I was able to get an urgent appointment with my GP. He diagnosed labyrinthitis and gave me Betahistine. I had an episode the next day but was then fine for a few months so presumed the pills had done the trick. No one told me I shouldn't drive and I felt ok to do so.

By this time I was 45, had finished my training and when the next bad attack hit I was working as a social worker. I had had a few attacks including some at night when I woke up being violently sick. I was scared witless, knowing nothing about Menieres and having no access to Google as we have now. So I got a private appointment with an ENT consultant. The day I was due to see him I had the mother of all attacks and ended up on the office floor throwing up into the waste paper bin. Thankfully, there was an old wheelchair on the premises and my husband was called to collect me, wheeling me out (flat tyres catching every bump) with a bowl on my lap! When I went for my appointment in the afternoon, I had stopped being sick but still couldn't walk straight. I was given the Menieres diagnosis there and then and told to cancel our holiday to Crete that we were due to take a few days later.

I was perimenopausal and then menopausal. Once my hormones settled down, the vertigo did too and eventually, life got back to normal and I resumed long distance and motorway driving. I had notified DVLA and they had allowed me to continue to drive as I always had about ten minutes warning of an attack.

After a couple of years, attack free, I honestly thought I had been mis-diagnosed. I stopped mentioning it when I booked holiday insurance and was confident driving.

Then in 2014 - retired by now - I was sitting in a garden centre cafe having a cuppa with my husband when everything started up again! The earth moved for all the wrong reasons and I had to be escorted out to the car with a plastic carrier bag to throw up into!

There followed a few years of the most awful, unpredictable vertigo episodes that would leave me crying my heart out with both despair and the pain from constant vomitting. I was afraid to leave the house without my husband and we would only go where we had to - no outings for pleasure any more! I felt as though my life as I knew it had ended.

I sought help from two private consultants. One was as much use as a chocolate teapot. The other gave me dietary advice that seemed to help turn things around. I remember his words,' We CAN get you feeling better than you do now. If the advice doesn't work, come back and we have other things to try!' Bless him, I think it was his confidence that he could make me feel better that carried me through the worst and gradually things improved to the point that I had only one attack over a period of two years. Unfortunately, I can't drive any more as the attacks, when they come, are totally spontaneous and I would lose control of a car immediately if one started. I'm not prepared to take the risk.

The last full on vertigo attack I had was in November 2019. However, instead I now spontaneously fall backwards, sometimes with spinning and sometimes without. This is being investigated but the most likely diagnosis is that it is still Menieres. Fortunately, I can go for several months without it happening and, frankly, it's easier to manage than the prolonged vertigo attacks. To date, I haven't really hurt myself as am usually able to break my fall by holding onto something or someone. If I had to swap, I'd stick with the occasional falls any day rather than feeling so awful for hours on end!

As you may already know, Menieres can chop and change in its presentation. You can see from my account here that I have had long periods of remission when life has gone on as normal. When at my worst, I felt I'd rather die as I had no life at all. But life is good again now and I hope that you will also go into remission and start to feel better again.

It's a bugger of a condition - hard to explain to others why you don't want to go out, have people around to you, plan a holiday, drive etc. If you have a family depending on you it's demoralising to find you can't cook dinner because you're chucking up in a bucket. When you can't walk straight in public, it's embarrassing and it feels as though everyone is watching you and thinking you've had too much to drink! I had to be escorted out of a supermarket once by my adult son one side in his business suit and my husband the other side. It looked as though I was being taken out by store detectives! What's more, I was in the alcohol section when I was taken ill!

So I've been there, dear friend, and my heart goes out to you!

Please hang on in there and perhaps the tide will turn for you and better times will come. I really hope so and wish you all the best.

xx Moy