Hi all, around 18 months ago I started having episodes where I would come over all hot, faint and on a few occasions a was violently sick and coming in/out of consciousness. Following scans and numerous testing I was diagnosed with Ménière’s disease. Unfortunately throughout the 18 months I have been slowly losing my hearing in my left ear and the dreaded T has become more and more profound. Fortunately (touch wood) the betahistine and water tablets combined have kept my episodes at bay for almost 12 months. I’m now going through ENT and referrals with the tinnitus clinic. About 5 weeks ago I got a hearing aid fitted, currently adjusting to all of this. How do you psychologically go through such a change? I’m struggling to accept everything, my diagnosis, the changes I am adapting to, and the anxiety that has come along with all of this. I am daily living in fear of my medication stopping working, someone noticing my hearing aid, someone asking me a question. I’m so afraid to talk. This is the first time I’ve found courage to write out and ask people who understand the disease and what these horrible diseases do to a person. Any help or recommendations would be so appreciated. Laura
Ménière’s disease - subsequent hearin... - British Tinnitus ...
There's lots to chew on in your message Laura, but I'll just pick on one point if I may. You mention you 'live in daily fear.....of someone noticing my hearing aid' - you might not have linked these comments in your mind, but that's how it reads. Forgive me if I've misread it.
Anyhoo, why should anyone be bothered about you wearing a HA? Would you think badly of one of your friends if they started wearing one? I appreciate it is a bit of a psychological barrier to get over, but trust me, it's nothing.
I was really resistant to the notion of wearing HA's initially and was a bit self conscious when I started wearing them, but that lasted about 2 days. Once you've got them in you barely notice you're wearing them. You can get different coloured ones - I swapped my 'HA beige' ones for black - much cooler. You can also get skins for them - pimpmyhearingaids.wordpress.... Be proud of them. No one's bothered about people wearing seeing aids, so why should hearing aids be any different?
Hi, thank you so much for replying. You have read it absolutely right. I knew what writing it that it sounded so ridiculous, and it’s something I really want to get away from, I want to stop thinking it. I never thought wearing a HA would worry me, all discussions were positive but then when I got it fitted I crumbled. I’m not someone who cares about looks or anything like that, so it still shocks me as to how I’m feeling about my HA.
What you say is absolutely right, my friends have been amazing. We’ve joked about pimping my HA, but do you know what, i think I might do it. The HA helps so much with the T and with my hearing (in most environments), so maybe I do just need to make it my own and less clinical.
You’ve definitely got me thinking now 😊
I was diagnosed with Menieres some thirty years ago and can only tell you how I cope. I avoid salt it makes the tinnitus worse.f it's windy I cover my ears it can trigger an attack. When I go to the dentist I always warn them as I have to lay with my head slightly to one side. I always wear flat shoes and use a stick. I never walk near the edge of the pavement as if a lorry goes past it affects my balance. I hate crowds as they knock into you.
I know this all sounds glum but mine has hopefully burnt itself out so I am left with tinnitus and a bit if balance problem. My son in law says I am lucky as it takes him 10 pints to get to my state. I know it sounds glib but try to be positive . I cannot stand silence so always have a radio or something playing. I wish you all the luck and send you supportive hugs if you need to ask me anything please do and I will do my best to answer. Hope this helps.
I am in the same condition as you have. Tinnitus and affected balance, 70% hearing loss in one of the ears. It affected my balance and fast walking. But I have not yet started the walking stick and hearing aid. As you said we should not expose ourself to chill wind. Better to always protect the ears with cotton or some other devices. I thank you for infusing positiveness to people affected like this. Can you please let me know in details, how useful the walking stick to gain balance? what type of walking stick is useful? Thanks in advance.
I bought my walking stick from Lloyd's chemist I picked the prettiest one. I use it because sometimes I feel as if u am loosing my balance and , it might sound queer, but I put it down quite forcibly in the pavement and it makes me feel balanced again. I also find if I am near the pavement edge and a vehicle passes down it goes and I'm OK. I didn't appreciate what a difference it makes, also if I am queuing it's handy to rest on. I have also like you lost some hearing but I don't have a hearing aid. Hope this helps you, you might find yourself feeling funny the first time you use a stuck but believe me they are brilliant good luck
Hello and welcome to the British Tinnitus Association forum.
Do feel free to ask any questions, I hope that you find this a helpful and supportive place to help you manage your tinnitus.
We have some resources that you might like to check out in addition to our home here:
tinnitus.org.uk (information and support details)
takeontinnitus.co.uk (free tinnitus management programme)
Helpline 0800 018 0527 (Monday-Friday 9am-5pm) (outside the UK you can call +44 (0)114 250 9922)
2 years ago I went through the same but with milder symptoms than what you describe. I haven't been diagnosed with Meniere though but the ENT at the moment told me it could be. Long story short, I noticed I was getting "depressed" when in general I am a very positive person. So for 2 years I did psychotherapy and helped me a lot (along with more studies, medication, mindful training etc). I know talking with people, family is great but a professional helps a lot. As a matter of fact I kept on going even when my symptoms disappeared.
I basically "attacked" the problem from every possible angle. This forum has been of great help as well.
Hope you get better!
Hi. Can you tell me a little more about your symptoms? Idk whether what I’m suffering through is Ménières disease or not cuz I experience no vertigo ar vomiting. I’ve had 2 episodes of fullness and high pitched ringing and ache in my right ear while i was sleeping. Nothing has happened since then but T is there. It would really help if heard about your experience. 💓
Hi, of course. When my episodes have happened I’ve lost full control of my body, like my head and body are separate. (I always say, imagine when you stand up and go dizzy for a minute, that’s how I feel but worse and sometimes it’s happened when I’ve sat down). My temperature fluctuates and throughout my T is the highest pitch it ever is. Unfortunately as this all increases my body shuts down and I collapse. Sometimes vomiting before collapsing, sometimes in small times of consciousness when I’m coming round (but worse cases it’s taken me 4-6 hours to come round fully). I’ve been lucky so far to manage with medication, but there will always be a risk that my body will become immune to the meds - fingers crossed that doesn’t happen though. When I was undergoing tests/scans there’s also something called labrynthisis (apologies if spelling is wrong) which from my understanding sounds like what you’re going through??
Thank you for the info 🙏. I’ll search it up and talk to my ENT specialist if i have an episode again. I’m 18 and the T and these ep started after a throat infection and I’m just hoping that it’ll go away with the passage of time cuz my ENT seems to think so but im a little worried. These pains that I experience in my sleep only last for about 10-15 seconds and then i just wake up alarmed cuz my ears are buzzing very loudly. I just hope it settles down.
Hi Blackpink, only a professional can diagnose you with Meniere. I never experienced vertigo in the sense of spinning, it was more kind of getting stunned. No vomiting but a strong desire to. Long story short a neurologist diagnosed me with acephalic vestibular migraines and gave me amitripthiline 10mg. That eased off the symptoms but the medication itself while on it left me in a zombie state. Fortunately I am off of it.
Hi there,,please please do not worry yourself silly, what you are experiencing is Normal, ok, not to other none T folk, but all of us on this forum most of not all have T,,as already said it honestly won’t be to long before you will NOT notice your HA though having been there and done it at night I do have to adjust them slightly as I sleep with both in as advised by my audiologist who specializes in T,, the gripping anxiety I experienced and thought would never go was 100 times worse than my T it took around 6 months and now I am 90% anxiety free, I went to see a counselor privately as nhs ones local to me not up to standard this lady I saw incredibly had T herself, the big word you need to get inside your head is ACCEPTANCE once that penny dropped I was ready for the fight, the T is as bad as ever the HA/maskers are a lifeline to me and I guess you also, as for wearing them I couldn’t care a jot providing they help reduce T, I initially thought going private would be beneficial but soon found out they are just the same as nhs other than they want to relieve you of around 3K for the pleasure,,finally when trying to educate others about T I just love this saying which I picked up from this forum,,,,TINNITUS, you won’t get it, until YOU Get IT,, that says it all, chin up and keep fighting the fight.
Such inspirational words. Thank you. I need to focus on acceptance of my diagnosis and everything that I now am. Just a different variation of myself, nothing to worry about. I need to keep reminding myself. I cried when I read your message, which is why I’ve taken until now to respond. For the past 18 months I’ve felt alone, but I feel like I’ve got people around me now. This is an amazing feeling!! Thank you so much to everyone!!
I too have been diagnosed with Ménière’s disease, it certainly is the most frightening of diseases. Besides the horrendous symptoms there’s the constant worry of when, where and why will the next attack come.
I can only give you my experience and for me I found each attack was a bit less than the one before and over an 18 month period they faded out. I was getting an attack about once a month, sometimes more sometimes less. For me stress was definitely a trigger and cutting down salt (sodium) was also a help, I could definitely relate some attacks to a salty meal, once after a tai which probably had lots of MSG.
It’s been 18 months since the last attack, which was stress induced worrying about flying, and I’ve settled now to a loss of hearing on my affected ear and high(ish) tinnitus. I accept that over attacks any day.
I may be one of the lucky ones, though I take comfort in a question that was asked on a Ménière’s forum. Basically the forum had some people whose lives were a living hell, the person asked while not trying to sound superior did most people with MD manage most of the time and symptoms were under control?. I’m glad to say she was inundated with replies from people who seem to manage ok.
From this I learnt that forums understandably attract questions from people who are having an awful time. I’m not denigrating forums, they are very helpful for those in need, but it can give a very skewed picture.
The “official” view is that MD burns out and the horrific vertigo attacks stop and you are left with T, hearing loss and balance issues, I feel that is where I am but have no balance issues. Of course there will be some for whom it doesn’t but in a small minority I think.
Like I say I can only speak for me, I was frightened beyond belief when my MD started. I had never heard of it and what I read scared me. I’m widowed and was afraid of having an attack while out alone in the street, would I lose my license etc etc. However it did ease and it’s managed for me with I think diet (low salt, caffeine and alcohol) and trying to be calmer. I don’t know how much the low alcohol and caffeine makes but I’m too scared of an attack and I find it easy to do and it can only help in health in general I think. Oh I take betahistine too, but small doses now and am considering cutting it out.
I think once I realised what I had I could hold back a full blown attack, as I had some warnings. I sat very very still, ideally sat on floor in corner so I had support and maybe sensory knowledge that I wasn’t actually on the worst fair ride in the world. I would focus my vision on one thing, like my finger. Once a menu in a restaurant for 30 minutes But it was sit totally still and unmoving and not closing my eyes that seemed to help.
I think maybe you should tell people you have this and what could happen. as otherwise you’ll be carted off in the ambulance a few times like I was and it’s amazing at A&E they hadn’t heard of it. I carry a membership card from the Ménière’s Society that has guidance to others.
I hope some of this helps, I have rather gone on a bit ..
I wish you all the very best.
Thank you so much for replying to my message. You are really the first person who I can relate to almost fully.
I’m hoping I can continue like yourself, no attacks for nearly 12 months here, but absolutely waiting and fearing still that this could change. Let’s hope it doesn’t.
How did you feel about reducing? And maybe even stopping the medication? My consultant mentioned this to be last week, quickly followed by a discussion about then inserting a grommit and there being a choice of 2 injections she could then use. I’m not sure where my head is with this currently.
Do you mind me asking about your experience with the DVLA? I’m currently waiting a decision from them. It’s making me very anxious and of course this is impacting on my tinnitus. I too unfortunately can link stress/anxiety to my tinnitus levels.
I like your way of thinking though, the constant buzzing or asking “sorry can you repeat that” is far far better than being collapsed going in and out of consciousness!! I will try and digest that more to see if I can adopt a similar mind set.
100%, talking, writing etc is helping me. I definitely want to be that person who has more positive days than negative. I just know I need to give myself time to get there. Any advice on talking therapies? Did you try these at all?
A&E took my blood ever time I was taken in, I knew the test would be clear but they didn’t know what else to do. I will start carrying my Ménière’s card around though, didn’t think about that!!
This week I’m trying to talk to people. And all in all I’m getting great responses and great support. I’m just stubborn and so used to bottling things up. But I can’t do that now. I need to talk about what I’ve got, and I hope this will help me accept more!!
Thanks again, your message really have been amazing for me to think about over the last few day!!
Oh thanks too for your reply.
I’ll try to answer your questions if I can.
My specialist spoke to me as he had to respond to them and basically he asked if I get any warnings and had I ever blacked out.
I replied, honestly, that I get about 5 to 10 minutes when I feel “sicky” and then it starts. I’d never blacked out. He asked could I get from the outside lane to the hard shoulder. Yes easily I said, which is the case for me.
So I guess that’s what he put on the form and the DVLA allowed me to keep my license. If I ever had one of these drop attacks that is sometimes mentioned I would have to hang my keys up. Given no attacks for twelve months I’d be amazed if the DVLA took your license. I’m surprised you weren’t told my your Dr or specialist that you had to notify the DVLA as soon as you’d been diagnosed with Ménière’s. I also told my insurance company, their not allowed to increase premiums on medical conditions but they should be informed.
I did a free course run by the NHS here on CBT and stress management, most of it didn’t apply but one part did called catastrophe management (or something like that) and that’s what I was doing. I’m not perfect but sometimes if panic starts to build I try to remember what I was told/taught. I got a number of books on mindfulness too, I definitely think it can help but I fall into bad ways and stop doing it when I feel better.
Mindfulness was definitely a help dealing with my grief, I sometimes wonder if that stress was what brought this on.
Walking in a group helps loads too.
Not for me to say, but grommets and/or injections when your not having any attacks ? I would have thought that’s best kept should (and of course no reason why they should) the attacks return.
I’ve cut right down on the betahitamine for some months now. I think I’ll drop it entirely very soon. But I understand if things are ok with you at the moment why risk changing anything esp if your not getting any side affects. Obviously only you and your specialist can decide, I wouldn’t like to influence you in that respect.
Any glad your finding talking helpful.
All the best, take care
I asked both my GP and consultant and neither of them informed me I had to. They said check the DVLA list and if it’s on there then yes. But it isn’t in there. It was only when I saw Occupational Health through work they mentioned a DVLA helpline and I called them this week. So full declaration has happened.
In terms of my signs, the more severe attacks I get a few minutes to react, so the hot sweats etc feeling sick, enough time to pull over definitely. Never had a drop attack, so hopefully that goes in my favour. So will my GP contact me or the DVLA contact them, how does that work? Should I report to my insurance now? I read that I should report once the DVLA has responded? Sorry this is all so new to me! Good to know they don’t increase premiums - just assumes they would.
Catastrophe management & mindfulness. On my list now to look into. I’m hoping to attend he quarterly BTA in my local area too, but that’s not until June/July I think.
My research into grommets says the same. And I know in the past we only discussed them should the tablets not work. So I’m a tad confused by the suggestion too. Think I’ll stick to my 3 a day tablets and try and live as normal life as possible!
Thanks again. So nice that you’re happy to be so honest for me too!
I found the form on line, you complete it and the DVLA will contact your specialist.
It’s a worrying time after sending it but they were quite quick.
Like I say I’d be amazed if you didn’t keep your license, especially as you’ve had no attacks for 12 months. It actually says “have you had any attacks in the last 12 months” and you haven’t so I think you’ll be fine. When I completed the form I’d just started with this disease and had had a few horrific attacks But always had signs like increased ear pressure and then feeling queasy for a few minutes before it hit and I kept mine.
I appreciate it’s something else to worry about, but really I think you’ll be OK.
Also given that your specialist didn’t press you to contact the DVLA it’s clear he thinks your OK and that’s what the DVLA listen to.
Yes perhaps your right, wait until you’ve had the dvla letter back.
I can’t remember what order I did it in.
But I was amazed how casual my insurance company was, oh ok thanks was all I got
I just think you don’t want to give the insurance any reason to wriggle out should for any reason they ask for your medical records. I expect somewhere in the small print will be something.
Indeed live as normal a life as possible.
A few years ago I was rock bottom but I’m OK now. The T is annoying and spoils things as I love music but like I do pretty much everything I want to. The only changes has been diet and really it’s only doing what is good for you anyway. Avoiding salt (ready meals, MSG, etc), not drinking excessively, walking etc.
I get the feeling your young, It’s such a horrible disease to get so young, but like I say I think most manage and I think we will too.
Anyway time presses
Have a good day.
Hi i am in the same boat as you. Got diagnosed with Menieres in Nov 2018.. which included loss of hearing and tinnitus. I was teffered by my dr to receive counciling (CBT) to come to terms with it all.. i think the more you tslk about it the better you feel as long as it dosnt become your party story haha..