I am new to all this and have just been to ENT appointment where I have possible Ménière’s disease. Have to wait for MRI before full diagnosis is confirmed but I’m pretty certain that this is what I have. I Have tinnitus, ear fullness before a vertigo attack with loss of balance. Episodes have been roughly every other day for the last 5 weeks and have already had enough! Just wondered about any tips or advice anyone could give me? Does betahistine (serc) help manage symptoms successfully? Any other tips I am really struggling to come to terms with this new way of life. Thanks!
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RB89
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Hi there I’m on a similar diagnosis path - first developed tinnitus & then later vertigo symptoms ( mine seems a lot more sporadic ) back in 2017, had an MRI 2018 revealing nothing sinister.
Tinnitus is pretty much ever present these days and the vertigo comes and goes - I would say a couple of attacks every month perhaps, varying in severity but I can manage this to an extent by avoiding alcohol, salty foods & also getting enough sleep seems to be key for me!
My consultant seems to think this is pointing at Meniere’s - I’m on 3 a day 16mg betahistine tablets, half way through a three month course - after which I will see the consultant again for a further plan.
The tablets seem to dampen the “fullness” feeling of the tinnitus but I still have the vertigo episodes so In my own experience I wouldn’t say they would help there too much unfortunately. My consultant wants to see if it could be blood pressure related & also referred me to balance consultants at a local hospital for tests there.
They were unable to perform the caloric test though ( quite a conclusive one apparently ) as my left eardrum has bad scarring so couldn’t determine if Menieres is the issue..
In the same boat really, just want answers & treatment as when the vertigo hits it can be completely debilitating.
Thanks for the message & understanding! I am just worried about it all at the moment the tinnitus is one thing totally I can deal with as it’s not severe at the moment, but the vertigo attacks are the worst! I just want a diagnosis ASAP - unfortunately I am quite impatient - and am effective treatment plan but I appreciate this disease affects people in different ways. I hope if I do have Ménière’s that the betahistine will help - I am trying low-sodium diet & no caffeine. I love a drink so would like to still be able to have a glass of wine though hopefully! Fingers crossed I guess & must try and stay positive!
You are right - it does affect people differently. I used to love a drink too but especially cutting out caffeine & alcohol has helped me.
Another trigger I have noticed is anxiety - this can bring on tinnitus which can then lead to vertigo so I try to control any anxiety through breathing exercises.
Read your posts so far. Macula-80. and to RB89. I am also in exactly the same boat . Tinnitus and Meneries . Also some hyperacusis . Terrible fullness in right side , dizziness and vertigo comes and goes . So terribly uncomfortable and debilitating . Some noise I can tolerate and some noise not at all. . Can only cope with one person talking quietly in a room. I am in a terrible state over it. I’ve had mri scan and ct scan last year. My consultant wasn’t interested , he sat perched on the edge of his desk as if he was about to run out the room!!! Seriously , I paid 195 pounds fir about 12 minutes of his time. I got referred to audiology and no loss of hearing , however I’m desperate for some help but nobody seems to know very much. But yes I’m in the same boat as the three of you . Let’s hope for some luck one day . I live in hope, what else can I do . Also does it make you exhausted and tired ??
Hello. I haven’t had Ménières but I’ve had several episodes of vertigo which were diagnosed firstly as labyrinthitis and secondly as BPPV. I don’t know if betahistine is useful for Ménières but apparently should not be prescribed for tinnitus.
I found that Brandt-Daroff Exercise for Vertigo (just google it )were helpful in retraining the brain. And was prescribed promethazine for nausea which helps too.
I developed menieres some 35 years ago. I joined the menieres society, don't know if they are still around.Eventually it burns itself out. Be aware of your balance problems, always wear flat shoes. Avoid salt.
Thank you all for your messages & advice it will really make a difference knowing there are people going through the same thing! I managed a run this morning first one in about 3 weeks so feeling a bit more like my old self. I am just trying to not let it affect the whole of my life and knowing that it can ‘burn itself out’ is hopeful
Hi RB89.As Corporal Jones would say "don't panic Mr. Mainwaring". I have had Meniere's for nigh 20 years now and started the same way as you. I got up one morning, walked into a wall followed by the other wall, and by the time I got to the bathroom I was violently sick..
I can't remember what drug I was given to get rid of the giddiness but was eventually on for about 8 weeks. The drug treatment is probably improved nowadays, hence something I don't recognise. BTW what is it like, white noise, beating drum. I'd be interested.
My advice to you would be to take things slower for now whilst you get used to it. Mine was related to stress. Menieres is a name that describes it, it's not like the "C" word, which fills us all with dread. Think of it more like headaches. The giddiness should subside leaving you with tinnitus only
There will be a local support group that you could join, I only rang once in the end menieres.org.uk/ .
They offered me that they could remove/deaden the eardrum, and once you open pandora's box you cannot put it back in the box, so I strongly went against this. That to my mind would have created problems.
I have three ways of "getting away" from tinnitus (or as we call it "T"). Intense concentration, a deep task that takes your mind off T. A bit of noise, and I say this guardedly, maybe music close to T sound, I go deep-sea fishing and the noise from the boat as it throttles up is absolute bliss. Music, listen to something like tubular bells, get into it and relax (Do not use ACDC, Led Zeppelin, and the like), you'll do more damage. You'll be fine. Tips don't work for everybody, but some might hit the mark.
I've been living with Meniere's and tinnitus for around 10 years. Betahistine does work for me, it keeps the vertigo under control. Plus, I always carry with me some Buccastem (which helps to stop an episode if I feel it's coming..) but hopefully with the accurate dose of betahistine is enough.
Some of the recommendations from my Doctor (to me) were to eat healthily and don't drop completely those meals that I enjoy, just balance them. Anyway, every case is different so ask them everything that you want to know. There is also, a lot of info on the NHS page and the Menieres' society page. Which have updated info about studies related to salt, caffeine, etc.
Thank you for the tips! I have been checking out the Ménière’s page a lot lots of helping advice. I hope Betahistine can work for me too if I eventually get on them & manage to control the symptoms
I was initially diagnosed with Menieres back in Summer ‘19, same symptoms as yourself and the others commenting in reply to you. I was given betahistine and a nasal spray veramys which were both initially very effective. However I came off them both in September ‘20 following a series of events during the summer which have culminated in further investigations ongoing and b12 injections ongoing as my b12 levels were very low and I am now getting difficiency symptoms ongoing and a suspected functional b12 issue. My ENT consultant signed me off as soon as he heard this was ongoing and told me to come off betahistine as he changed his mind regarding my diagnosis deciding I probably have pernicious anaemia. This isn’t confirmed yet. However most of my symptoms dramatically reduce a few days post injection of b12 then start to return gradually after about 6-7 weeks. I have injections every 7 weeks currently and am being investigated by a consultant neurologist.
As I’ve not had a conclusion yet I can’t say whether I have both conditions, or purely one of them. I also probably had Covid back in March ‘20 which may or may not be connected to the b12 symptoms as post covid symptoms are very similar.
I just thought I’d comment as there are similarities. I dramatically reduced my intake of salt and was already avoiding caffeine. I still enjoy wine but have reduced the volume I consume. Little and often seems to be fine but if I have a considerable amount I start to get an ear fullness feeling and the alarm bells start ringing along with the tinnitus! The tinnitus appears to come and go however I think this is mainly due to me being more aware of it at certain times than others. I’ve learnt to zone out of it and positive thought and subconscious distraction is very effective in this. Good hydration is also very helpful.
Interestingly my uncle (who had a menieres attack 30 years ago just had the one attack and then nothing though his hearing did deteriorate a little) has just had another attack, which is quite extraordinary. He had his Covid jab back in February. I can’t help but wonder whether his immune system has been stirred into overreaction. It has subsided now and he’s feeling a lot better having reduced salt etc.
Anyway good luck with your prognosis and hope you start feeling better soon. Positive mental attitude helps enormously as it also helps with stress which is another trigger I think. In spite of the issues I’ve had, I’ve managed (when we’ve not been locked down!) to still enjoy golf, riding and walking along with most other hobbies I enjoy. The one thing I seem to struggle with is concentrating long enough to fully read a book but hopefully this will improve in time.
Sounds like you have been through the ringer a bit with this! I think that’s the most frustrating thing is not knowing and being passed to all different areas. I take B vitamin supplements everyday as I am vegan and read that we can pack this vitamin so hopefully that will help. Glad to hear you are playing golf & being active I love golf too and can’t wait to play again! Good luck to you in finding out what it is I hope you get some answers soon!
Essential to get your b12 levels checked, my body isn’t absorbing it so little gets through from supplementS. Your liver stores b12 for years so you can be unaware you’re low until you start getting a few symptoms. Important to keep them up as the neurological symptoms can cause damaging effects like dementia if untreated and are so often just passed off as age related or hormonal. I’m sure yours are fine but it’s worth ruling it out as an easy fix if you just need a few loading injections
A lot of info given is really useful I’ve had these issues since early feb so coming up to 12 weeks ..can anyone tell me ? I was given Betahistine for two weeks and then asked to stop to see if my issues had resolved ..not unsurprisingly they hadn’t and went back on Betahistine the following day thinking (excuse the pun ! ) things would quickly balance out ..but another seven days in and back to dizziness etc ..has anyone else been on Betahistine and stopped then restarted ..if so how long before they ‘kick’ back in ? Can I also be cheeky and ask ..if screens (Laptop, IPad, phone etc) really upset you ..I can only last about 15 mins at a time ?
Thanks really appreciated and good luck to all ..it really is horrible !
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