Ménière's disease

[Jacey1840]

Hi,

I'm new to this. I came across the community while I was looking for some info on menieres, Have been suffering with vertigo and low frequency hearing loss in my right ear for some years. Initially the attacks were few with a good deal of time in between and not very severe. More recently attacks have become much worse causing sickness and feeling quite unwell and long periods of dizziness and light headed.

Sometimes my hearing is worse than others. I have a hearing aid but haven't found it very useful. I saw the audiologist last week and he has given me a new different hearing aid with different settings which seems a bit better although early days. When I told him about my symptoms he did seem to think I had menieres and a doctor has previously indicated this could be the problem. I'm waiting for an ent appointment.

Does anyone else have any experience of this? From what I can gather there doesn't seem to be much treatment available. Am also terrified that I won't be able to drive, I also have rheumatoid arthritis and have no idea how I would manage without my car. Would appreciate any advice/info...

[raymck]

Not much help I'm afraid, except my Dad was diagnosed as having it in mid-life and managed quite well in the way he could feel the faint coming on and lie down in time. He used to scare us by going a sort of ashen grey colour, but then back to normal when it passed! He never aspired to driving, but he had to quit playing solo cornet in our brass band, which was sad as he was a class player. Hope you find a workaround as he did and enjoy what's left. By the way the reason he had to give up playing was due to the medics pulling all his teeth out in one go. Beware!

[Jacey1840 in reply to raymck]

Thanks raymck,

So sad your dad had to give up his cornet playing

[MemorySticked]

Sorry for the slightly late reply on this!

I've been to ENT and they suspect that I have Menieres disease, I have to wait for my follow up appointment with the consultant to discuss whether the betahistine helped or not and then they can decide if it is (but he said that he was 98% sure it was!)

I get very unpredictable sporadic episodes of dizziness, but I get a strange feeling kind of headache before I have one, about 15 minutes before (I dont know if this is a thing everyone has, but I seem to have it) and basically I phoned DVLA as I was terrified of losing my license and they said that they were not concerned as I was able to safely pull over in time if I could feel an attack coming on.

Also my family friend has menieres, which is pretty well controlled with medication and he still has his driving license and drives fine. So a diagnosis is Menieres does not necessarily mean that you will have to stop driving!

I also have a hearing aid, but I have a mild loss on the high frequencies and I have problems processing the sounds that I do hear anyway!

I've been told and I have researched and Menieres is unfortunately a very unpredictable beast, you definitely have periods where it is worse, almost like flare-ups! You can go for weeks/months or years and not have any attacks, or you can have several in the course of a month! Also the severity differs hugely between attacks, but I have found that the betahistine has reduced the severity of the attacks, so they're not as disabling for as long when I have them!

I know it's not a very helpful answer, but I wanted to explain to you how it affects me and let you know that you're not the only one!

Have a read of the NHS choices page for Menieres, it did help me to at least kind of understand how to cope a little bit more with it! (nhs.uk/Conditions/Menieres-... )

I hope this helped a little! x

[Jacey1840 in reply to MemorySticked]

Thank you so much, this definitely is helpful and you have really put my mind at rest re the driving issue.

This is such a good resource to use and such lovely people with some great advice/info.

Good luck with your treatment I hope it all works out well for you.

[MemorySticked in reply to Jacey1840]

I'm glad I could be of some assistance! Yeah, I was so worried, but as long as your doctor doesn't have a problem the DVLA shouldn't!

I do really like this community, I find that everyone is really helpful and no-one is judgemental of you!

Ahh thank you very much!

I do hope that your ENT can help figure out what is happening!

[Manyears]

Hi, I've had menieres for twenty years. Some things that have helped me loads are 1. Tablets - I take betahistine and when I feel a fullness in my head, I take prochlorperazine under my top lip. 2. Reduce your salt intake to very low I.e. 1gram per day and also reduce caffeine and alcohol. 3. I have a grommet fitted which has been fantastic. It doesn't work for everyone but has been my lifesaver. I hope this helps. Because of the grommet, I'm able to have a little more salt, caffeine and alcohol in my diet. I do have tinnitus which is getting worse and I have a hearing aid which doesn't seem to be working but am going to see about it soon. When I'm tired my symptoms are worse but a decent sleep and I'm fine and able to cope.

[kerryhannah]

You may not see this now as it was a while ago but thought I would respond.

I am 32 and have Ménière's. I have a hearing aid for my right ear and it's brilliant to help directional sound and also to stop the tinnitus. I know I am going to get an attack if I can hear tinnitus suddenly despite wearing it.

Weirdly, I have spondyloarthritis which is a type of arthritis. Perhaps there is a link?! Random to both be diagnosed with similar diseases!

We are currently trying for a baby so I cannot take Betahistine anymore and so am on the same tablets ladies have for morning sickness. They are melt in the mouth and are just when am having an episode.

It sucks, but it's manageable! Am a teacher too which can be scary sometimes if I can feel an attack coming on!