Unable to cope with menieres

[Lambskins1]

I have had such fullness in my right ear, giddyness when talking, tinnitus and just general wooziness. I take cinnarizine 30 x 3 a day. I feel it just isn’t helping me stay in control of any symptoms and my whole life, relationships etc are affected by this as I’m constantly panicking over how I feel. Does anyone identify with this? Pretty sad tonight

[rabbits65]

Yes I have fullness in right ear too and giddiness that might be Meneries disease. It’s horrible. So yes I can identify with it with you. Do you find it makes you more tired and thus makes it harder to cope.I think you wrote the other week if I remember . I take Stemetil for the giddiness . I try not to get anxious or upset as this just increases the tinnitus .

[Lambskins1 in reply to rabbits65]

Thank you Pantu, I am just really stressed out with it. Seeing ENT on Wednesday so hopefully they’ll give me something for the wooziness and giddyness. It’s so good to have support on here xxxx

[rabbits65 in reply to Lambskins1]

Your GP can give you Stemetil . I know exactly what you mean by “ trapped” very precise definition of Tinnitus but whatever can we do ? We must try to accept it or otherwise it’s not worth living . Think our brains will accept it eventually .

[Lambskins1 in reply to rabbits65]

Thanks rabbits65, I’ve never felt so trapped by anything, it’s horrible. I’m hoping that I’m Wednesday when I see ENT that they can help with the giddyness and woozy feeling. I have taken stemetil before and I hope that they say I can take it again daily as I need something

[Pantu]

I feel you there! I've had Meniere's for about 8 years. I think the worst part is something that you mentioned, not knowing what's going to happen or when. It might be an awful and stressful thought. Even worse when someone says, just relax! (like if it were easy haha) but they are right... Otherwise is worst, there will be always a fear of an episode, a louder tinnitus, deeper hearing loss, or whatever our mind trick us to worry about. For me, focusing on the things that I can do and letting know people around me about my condition has been really effective. I still can have episodes, but I've learnt how to act in that case, and people around me have also learnt, so I feel really assured and for me, that is the key to stay calm. Hope you feel better today, the day after is always a little bit better!

[Hidden]

Hi, I also know your pain. I have had menieres s for about 5 years and it is partly due to why I also have agoraphobia. I know when I started getting the symptoms the way I lived my life completely altered. I have several other conditions mainly auto immune but it was the menieres so that had such a drastic affect on my life. The vertigo and tinnitus can be so debilitating. I suggest that if you do get diagnosed ask to be referred for physiotherapy as they can help.I think it is getting as much support as possible and trying to find what works best for you and pacing yourself finding triggers then trying to avoid them.

I hope your appointment goes well and remember to ask as many questions as you can. I always try and write it down like an agenda and when I see a doctor regularly email my questions to their secretary a few days before so they have an idea of what I want to discuss. I find this helps stay focused on what you want to get out of the appointment but also helps them.

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[Lambskins1]

Hi Crazydog, I really appreciate your advice and support ahead of my appointment tomorrow. I have made a list to take with me and I am determined to get the most out of it. I will ask about physiotherapy tomorrow too as I would like to try to get as much help as possible. I want to move towards coping with this as it is completely overwhelming at the moment. I totally understand your agoraphobia as I struggle when out and about and try to limit what I do as I feel safer at home - this is why am I am currently not working as a primary school teacher which I’m finding really hard. I hope you are having a good day today and keep in touch x much love

[TinnitusUKPat Partner]

Hope things go well for you, Lambskins. We have an ENT appointment webinar coming up at the beginning of June, but in lieu of being able to deliver that session early, I'll can summarise one of the guidance sheets:

1) Be prepared - have a list of what you want to discuss and what options you have considered.

2) Check how long your appointment will be - this prevents missing important questions and lets you use your time to its fullest advantage.

3) Check the format of your appointment - face to face, telephone or video call? If you need captions to be provided, ask the specialist ahead of time to arrange this.

4) Opt in to a copy of your clinic letter if you are seen in hospital - useful to see what the consultant has concluded, as well as getting a copy of any audiogram or management plan agreed upon.

[Lambskins1]

Brilliant advice! Thank you so much. I will go into my appointment much better prepared now - Thanks so much!

[Hidden]

Have you tried Betahistamine. As we know there is no cure all for this. But I think betahistamine is working for me in reducing the number of attacks. I’m getting them annually (or longer) now. Once when I stopped as I’d gone two years without I had an attack out of the blue a few weeks later.

I get patches of ear pressure, I’ve been having pressure on and off for a few weeks now (weather changes? Who knows).

Do hope you get it under some control, it really is an awful awful thing to have.

[Lambskins1]

Hi Daffyear thanks for taking the time to reply to me. I have ear fullness all of the time and strange pressure sensations that make me feel queasy. I have tried betahistine but it made me feel worse - maybe my possible diagnosis of menieres needs looking at as I’m convinced I have something like vestibular migraine as well. My vertigo is non spinning following my steroid injections recently but it’s the 24/7 fullness that is driving me insane

[Hidden]

Lambskins1 I hope you got on ok at your appointment. I notice your post was 4 months ago so hope this is relevant.

The condition is so limiting, distressing and - I've found - frightening, when in the grip of an attack. I find myself hiding away from people then venturing out of my shell to see people if I feel ok.

It is a horrible condition. I don't have a full diagnosis but been told I have 'probable menieres.' Recently I had a run of nights where my bed felt like it was on a slope and I had the usual loud tinnitus and ear pressure and woke up shaking. The bed feeling sloped was disconcerting and I felt I could easily fall out of bed. I then felt like I couldn't trust my own perception.

On many days I have general feeling of disequilibrium and distorted hearing (I wear one hearing aid)

Betahistine made me feel really tired and ill. I also tried prochlorperazine and cinnarzine but they did not agree with me, weird reactions to them. I saw ENT twice but felt they were a bit vague. I had an MRI on 2014 when I first got my hearing aid... I've now been referred to neurology.

I noticed you say you cannot work. I gave up teaching in a Secondary school a year ago, due to these difficulties - but the attacks are not settling. On days when I am well I like reading and walking (though I don't like walking too fast as it makes me feel giddy and I sometimes have trouble with depth perception and my feet go 'sticky')

That is all I can suggest- take time out for yourself when you feel well and time out to rest when you need to. I also feel stressed by other people's opinions - as I look well and imagine they think there's nothing wrong with me but I need to get past that.

Good luck and hope you get some help...here's to more good days ahead.