Struggling with Ménière’s

[RB89]

So posted the other day about possible Ménière’s diagnosis and I’m just really struggling at the moment. Trying to come to terms with everything and mentally just feel really down. I am worried about work as am having episodes every other day now which is completely debilitating. Saw ENT last Friday who basically said it could be Ménière’s or vestibular migraines but I’m pretty sure it’s Ménière’s with the aural fullness & hearing loss before an attack. He advised low salt diet which I have been doing for a couple of weeks now with little change. Next step is the betahistine tablets but I am also concerned these won’t work. Just unsure of everything and how the future will be. I know it can take time I just need reassurance it won’t be like this forever 😞

[rabbits65]

Hello RB89I am so sorry your suffering.

Your not alone I am too.

I agree that Meneries is awful.

Giddy attacks and fullness in the ears and also some tinnitus (just to top it up). We just have to ride it out I think . Maybe not. I keep meaning to go back to my doctors as some days I just can’t cope either.

I am taking a tablet called

Prochlorperazine . Three times a day. They help a little .

[Happyrosie in reply to rabbits65]

Prochlorperazine are really good for nausea, I agree. I had it prescribed when I had labyrinthitis and BPPV. I really don’t know how doc differentiate between these two, and menieres. I do know that vestibular rehabilitation exercises helped to some extent.

[rabbits65 in reply to Happyrosie]

Thanks. . There is little nausea it’s mainly the giddiness and swaying and fullness in the ear that is sending me off balance. I’ve learnt to habituate to the tinnitus with the very great help of being a member on this site .I hope you are well

[RB89 in reply to rabbits65]

It’s the worst thing I have ever gone through and the feeling that there is no cure just depresses me. I just worry also that none of the treatments will work I am trying to be positive but I am really struggling to.

[rabbits65 in reply to RB89]

I know I agree with you .We will just have to live in hope that it gets better .

Relaxation helps . Enjoy the sunshine . You now know us on this site and know your not alone

[Happyrosie]

Have you tried vestibular rehabilitation exercises? Just google it. Do the easy ones where you must move your head and or eyes, not the lying down ones. It can’t hurt you and might just help!

[jojomac23 in reply to Happyrosie]

I would be very careful about trying these exercises yourself. I tried them and think I caused the worst vertigo ever and vomiting I have now contacted a physiotherapist who specialises in these exercises so hoping it will work

[Happyrosie in reply to jojomac23]

I dear I’m so sorry. The ones I was talking about are the ones where you just move your head and or eyes. Indeed the lying down ones got me vomiting too! My doc recommended them as she’s an ear specialist within the practice.

[jojomac23 in reply to Happyrosie]

Sorry I missed the bit where you said just head and eyes

There are many videos out there saying to try the lying down ones

You are so right about not trying them.

My experience after doing the lying down ones was the most horrific experience. I thought I was sinking into the floor and the walls were coming in and I had to hang onto the sink as workd was spinning while vomiting. Lovely image I know

I have an appointment with a physiotherapist this week so I hope it helps

[Happyrosie in reply to jojomac23]

Good luck!

[prf1]

I am so sorry that you are struggling with Menieres, my journey lasted a couple of years.It started with hearing loss and tinnitus and hearing aids were prescribed.

I then developed regular attacks of sickness and prochlorperazine was useful. Very quickly after that I started with drop attacks, often three or four a day and an ENT consultant diagnosed menieres and put me on betahistine,

The betahistine had no impact on the attacks and the dose was doubled, again without effect.

A grommet was placed in my ear and steroid injected into the inner ear which stopped the drop attacks but only for a few weeks. I continued with steroid injections for months but the horrible drop attacks always returned.

Eventually I was told the only option was to destroy the inner ear with Gentamycin injections. This was successful in stopping a lot of the symptoms although I have no hearing in one ear, raging tinnitus and a loss of balance.

Balance retraining and a cochlear implant have been a huge success.

[rabbits65 in reply to prf1]

Gosh !!! You really have gone through the mill , I’m so sorry it puts my problems in the shade . I am learning to habituate with the tinnitus and it’s getting more acceptable. However the Meneries is just a horrible uncomfortable thing to accept . I have to walk two lively poodles and I usually hope someone can be with me. I don’t think doctors know very much , or if they do there appears to be little help for us .

I hope your alright .

[TinnitusUKPat Partner]

Really sorry to read about the difficult times which you have been having with what might be Ménière’s, RB89. I would be remiss if I didn't also signpost you or anyone else experiencing problems to the Ménière’s Society website - they have a lot of really helpful advice and information on this and other balance-affecting conditions - menieres.org.uk/

[Pantu]

Sorry to hear that you are struggling there, if it helps you are not alone a lot of us are dealing with these conditions. I believe we all have ups and downs but overall, is possible to have a normal life. Worst part is being patient and trying to relax (uff I hated so much when people told me to relax haha but that is super important) Stress just makes these conditions worse. Betahistine did work for me, sometimes doctors had to adjust the number of tablets according to how I was feeling, but it did help. Every person is different, but just try to be hopeful Follow Doctor's advice and keep asking for help if you need it.

[RB89 in reply to Pantu]

Thank you for your kind words and advice. Yes it is definitely hard to stay patient & positive when you just want to feel better! I have an MRI scan booked for a few weeks time and discussions with my GP and ENT consultant around medication but struggling to wait that long! I’m glad Betahistine seems to be working for you fingers crossed I hope it does the same for me as I believe I will need it🤞 Trying the low salt, no caffeine and minimal alcohol but it is hard and not seeing much improvement thus far. Just trying to accept the ‘new normal’. There really are some lovely people on here and seem to be a great support thank you!

[Meni57]

When I was first diagnosed I found it hard to come to terms with too, it felt like my quality of life was gone - I am a glass half full person normally but the lack of control made it difficult to cope with. I was lucky to have a doctor that actually knew about Menieres & kept checking in with me to check if the betahistine was working & would up the dose gradually until I reached a level (24mg) that worked for me. She also changed my BP meds to one that had a diuretic effect. I truly hope you get relief with meds when you get them.

[Hidden]

Yes this really is a horrible horrible disease. Both physically and trying to deal with the uncertainty of it all. It started not long after I was widowed and at first was simply scared to go out and became very low and I was starting from a low point.However for me over the years the attacks came in longer gaps and with less severity. A few bad ones but more of the shorted 20 minutes and if I stayed very still and focused on one point like a finger a few feet away it would subside. Now they are more than a year apart. I get T all the time and patches of ear fullness when I think oh oh here comes another but it doesn’t.

Betahistamine works for me, I stopped it once as I’d read it wasn’t thought to work but 6 weeks later bam a real bad one.

I do low salt and no caffine and try to eat healthy but not obsessively. I have alcohol (beer) but don’t exceed the recommended amount per week. I think but not certain red wine is a no no.

I take CBD oil, don’t know if it helps but I definitely slept better when I first took it, maybe it’s a placebo but I’m sticking with it.

Do try and get an appointment with a neurotoligist (the T in the name is important) and the meniers society have a list of them in your area.

I did a feee CBT course, I found the catastrophising part relevant and when I slip into a low patch I try to use what I was taught and it helps. But there’s no getting over this is a horrible disease. However I think most cope, yes there are some and my heart really goes out to them but most cope I think.

Wishing you the best.

[NLS8]

I developed Menieres 40 years ago and was on Betahistine (Serc) for a couple of months and then stopped as I didn't want to be on drugs permanently. I had several decades without an attack until last month when I had 5 severe vertigo episodes over one month lasting between 3 and 6 hours. I was put back onto Serc (16mg 3 x daily) and didn't have an attack for four weeks. I then discovered Arlevert which has two constituents (Cinnarizine and Dimenhydrinate) which act on the brain centres which control vertigo and proved very effective in clinical trials. My doctor agreed to let me try it in place of Serc. After 10 days I have had to stop taking it due to vision problems including double-vision (nasty), nightmares, excessive drowsiness and leg 'heaviness'. I am now back on Serc. You will probably need 16mg Serc 3 x daily but I had no side effects from that so recommend it. I hope this helps.

[RB89 in reply to NLS8]

Wow decades without an attack that would be nice! Sorry to hear that it came back though as that must have been distressing especially after so long without an attack. The new drug sounds interesting at least they are coming up with new ideas all the time. Fingers crossed one day there will be more permanent relief. I have been on Betahistine for the last 5 weeks nearly and in that time I have only had 1 severe attack, so fingers crossed it is helping. Hopefully this will continue! Thank you for your advice and sharing your story ☺️

[NLS8]

I've had no vertigo episodes for the past three weeks so I'm going in the right direction. Someone recommended taking Vitamins B5 (125mg) & B6 (100mg) and I started these six weeks ago. At first I noticed no difference but recently my tinnitus has reduced in general and often on waking I have no tinnitus at all. I'm not saying the vitamins are responsible. In fact I doubt they are, I being a sceptical sort of individual, but I'll certainly keep taking them for now anyway.