Hi, I’ve just turned 70 years and for some time over the last two years I have been having problems with tinnitus and odd spells of momentary dizziness with a strange sound in my head. At first I didn’t really take too much notice of it, but over this time it has slowly increased, especially these dizzy moments, it’s like I going to faint, but I don’t and it’s over in seconds usually, although it may happen in threes. Very difficult to explain.
The sound in my head is a constant buzzing and ringing sound, but I can distract myself during the day by listening to music etc…..Until it comes to bedtime! Then I have trouble getting to sleep, but eventually go off to sleep, because of my age I have to get up to visit the toilet. This is when I get these moments of dizziness most often, it does happen during the day occasionally, but it feels more disconcerting at night, I get up and have slight balance problem when this happens. On one occasion I collapsed and I came around quickly, but was disoriented for a while. It only happened once, but I put it down to getting up too quickly and blood pressure was low at the time. I go back to bed and again struggle to get off to sleep for the sound constantly going on in my head. On odd occasions the sound can change and I can hear a woman singing way in the distance so to speak and other times just the sound of music, it isn’t anything I’m familiar with. It’s disconcerting because it seems real, even though there isn’t any music. Very odd times, I hear a shout or a sudden short words spoken out loud. Now that did frighten me at first and I thought I was going mad. My wife didn’t hear anything so I’m putting it down to this strange tinnitus that I’m experiencing.
I couldn’t ignore it any longer and saw my G.P about it and he suspects Menieres, but it is difficult to diagnose. There is another condition he mentioned where very tiny pieces of debris in the ear canal fluid can cause it. He asked me if I’ve noticed any hearing loss, but I haven’t noticed it, although my wife says I am, I think it’s called selective hearing 😀😆😆. Although for many years I’ve always struggled to follow conversations in noisy places such as pubs, i can hear the noises and other people talking further away than the person near me, which always struck me as strange. It’s early days, but I’ve just been prescribed Betahistine to counter some of these symptoms.
I'm just wondering if anyone else has similar experience and has Betahistine helped.
Thank you for reading this.
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Jools777
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Hello Jools. Whilst I’ve had tinnitus for many years ( mine is as if it’s a badly-tuned radio) I’ve certainly heard of tinnitus as musical. You can read all about it on the British tinnitus Association website.But about the dizziness.
Firstly, it rather sounds as if your doctor is not aware of the latest guidelines from the National Institute for Clinical Excellence (NICE) on how to treat patients with tinnitus. One of the things that NICE says is that betahistine is not suitable for T.
That said, I don’t know whether betahistine is good for menieres or not.
I’ve had similar symptoms to you (the dizziness and so on) which was diagnosed ten years ago as labyrinthitus and four years ago as BPPV (look it up).
I really don’t know how doctors differentiate between the three conditions.
My treatment for BPPV was prochlorperazine and I still take it now and again when I get an attack of BPPV, which you may have. Please look up “vestibular rehabilitation exercises” and think about doing the ones where you move your head and eyes only. These exercises train your brain to believe what your eyes are telling you and not your ears. There are crystals in the ear which have become misaligned, as your doctors has said.
It’s well worth while thinking about hearing aids as they make the real world clearer and so the T fades into the background.
Please do post again if you think I can help further.
Hi Happyrosie,Thank you for your reply. I consider myself lucky that I haven’t had this condition (whatever it is) for long……well as far as I’m aware. It is interesting that my Doctor has prescribed this medication. I have other medication for a heart condition that I’ve had for nearly 20 years. I did ask if this was ok with my current medicines. He said it was fine. He prescribed it to control the dizziness sensation rather than the tinnitus, although he did say that it may help with the tinnitus I’m experiencing. I’m on a low dose, so I’ll see how it goes over the next few weeks. I’m coping with the tinnitus for most of the time. I’ve read that some people get attacks of dizziness that come and go. My can occur at any time, but I wouldn’t class it as debilitating, I manage it for most of the time, except it’s got more frequent in the last few months.
He did say it was difficult to diagnose, but he hasn’t referred me to see a consultant as yet. I guess he’s seeing how it progresses and if local treatments will help.
Thank you for your help and all the best wishes to you.
Agree totally with Happy Rosie. I had T left side for 3 years and acute Vertigo attack last year. GPs do not understand these symptoms but ENT consultants do. I got my BPPV diagnosed and exercises to rebalance the the inner ears. My friend got his Menieres diagnosed and is on meds. Suggest you get to see ENT Dr. Good luck🍀
Hi Jools. I can relate to what you are describing perfectly. I have had tinnitus for many years which I described as a whole ‘factory’ of noises going on. I had moderate hearing loss and with the use of hearing aids this didn’t bother me at all. 14 months ago I woke one morning to find my right ear totally blocked - within half an hour I could hardly stand because of dizziness and nausea, I soon realised that I couldn’t hear anything in my right ear. I had Labyrinthitis and was put on very high dose steroids. About a week later I became aware that I could hear music and after a while asked my husband if he could hear it - he said no - this was the start of my ‘musical tinnitus’. If you can - Google musical tinnitus or Musical Ear Syndrome’. I was a classic example - it had started with me hearing Silent Night but is now undefined repetitive music which is there 24/7. I was very frightened and depressed at first and went through all sorts of emotions. My G P had never heard of this and I have come to the conclusion GP’s in general either haven’t read the NICE guidelines or as there is no cure just brush it aside. I really think you should ask to be referred to an ENT specialist. I saw one privately as Covid was very high and waiting lists were horrendous. I had an MRI scan which ruled out anything untoward but did show some decreased blood flow to the left side of my head (I had a TIA in 2018) which I take tablets for. My dizziness lasted for months and I still get it occasionally. It is very important that you have a hearing test - mine showed that I have lost most of the hearing and the ability to hear higher tones in my right ear. Apparently if it is Menieres you lose the lower tones - or so an audiologist told me. I take diazepam - 2mg occasionally when my tinnitus gets very bad and stresses me out It does bother me reading about your dizziness when you get up in the night and I would urge you to ask for referral even if it is just to put your mind at rest. Best wishes.
Hi Linley - that’s how it was described to me by the specialist - I only know that a TIA is caused by a temporary loss of blood flow to the brain. I don’t know why mine happened - I felt unwell with double vision that’s how it started but it must have caused some visual damage for him to have remarked on it. All my tests were negative so I am now on an Aspirin substitute called Clopidrogal . Best wishes Terry
Hi Beesmac,Thank you. Everyone is more or less advising me to see a ENT consultant and have a hearing test. That sounds, excuse the pun, like excellent advice. I’m sorry to read that some of you have had a really unpleasant experience with this condition and I can relate to how it can cause anxiety as in my case mild depression at times, I find ways to cope with it as best I can. My symptoms are not as severe as some of you I’ve read about, but it is frustrating at times. I suppose GP’s are very busy on catch up and deal with so many different things. He did spend a little time explaining it and even used a whiteboard to illustrate the canal and what could be going on. I do intend to go back and report on how this treatment programme (Betahistine) is working out, but it’s clear to me that I need to take further action to get to the bottom of this, and I want to thank you and others that are putting me on the right course.
It’s good to know that I’m not the only one confused as to what is happening to me and I’m grateful for your support. I was at a point of thinking that I was going slightly mad with these strange sounds and although I do not wish it on anybody, it’s good to be able to share our experiences and support each other. I will add any follow up appointments and treatments, if any, as time goes on.
Hi Jools so pleased we have been of some help - I think we all have believed at some point that we were going mad! I know it affected me very badly in the beginning. Good luck with ENT.
Hi there! I can totally relate, seems quite similar to many experiences here!
I've had Meneries (and the associated tinnitus as well) for years now and I've experienced a lot of random noises, including "explosions" in the middle of the night, some dry odd noises like someone dancing with wooden shoes, even for a time I could listen to the Mario Bross video game music... yes... we can hear all kind of random things sometimes, but you will cope you'll see! in my experience they come and go, sometimes louder sometimes I forgot about them...
About Menieres... every person is a different world, Betahistine does help me as I am not getting so many Vertigo attacks now (Betahistine in my case is for vertigo, not the tinnitus) but ask your Gp to refer you to ENT so you can have a proper diagnosis, it does take time, is sometimes annoying... but in the end, it did help me.
Hi Pantu, it useful to know how B is working for you. I’ve only been on the tablets 8mg 3 x a day for a couple of days, but already my dizziness is much better, especially at night, but the tinnitus is just the same. Although I’m sleeping a bit better. It could be because it’s part of the histamine group and one of the side affects is drowsiness, but not noticeable during the day. Thank you for your message, it’s been very helpful as all other messages have been as well. Thank you.Jools.
good morning. you are experiencing some of the symptoms I have myself so you are not going mad! I refer especially to the voices you hear calling, as I hear my name called usually ( randomly - perhaps only 2-3times in a year)and I put it down to my subconscious doing crazy things and ignored it and have never told anyone so thank you for sharing your experience. Makes me feel better! The rest of your symptoms I too have but I went to my local ENT and they were fantastic. I had to wait 2 years to be seen because covid interrupted everything but now my tinnitus doesn't bother me and as I have hearing loss in the same ear, i was given a hearing aid which helped my tinnitus enormously and because practitioner was so understanding and reassuring, I felt instantly relieved. Its amazing how much my stress levels reduced after that 1st appointment. I had a ct scan to rule out anything nasty and because I too experience random dizziness and unsteadiness and 'the drop' especially getting up in middle of night, I was given the B drug same as you but could only tolerate it for a few days. Consultant arranged vestibular tests too and he thinks I have the beginnings of Menieres because of the combined tinnitus/hearing loss and random dizziness so he prescribed B for six months to 'keep Menieres at bay, but because I couldn't tolerate it mentally, I didn't continue and since last Oct I havnt had another dizzy/dropping to the floor/experience in spite of not taking B. As you say, Menieres is famous for being difficult to diagnose and to be honest it didn't do me any good reading about it. I have accepted my tinnitus and can say, with the aid in, I have learned that I can live a normal life with it. So If I were you I would get a referral to ENT and if you are anywhere near wiltshire, attend Swindon hospital as the team there are absolutely fantastic. Ps - I have kept the B tablets for times just in case I get I have another 'episode' as they control the symptoms effectively. Several years ago I had Labrynthitis in my left ear and my problem may be linked to that. I was given the Epley manouvre by my GP at that time as the crystals in my inner ear had shifted. I was also given exercised to do at home which were effective at that time. I empathise with where you are at present - but you are not going mad - there are so many of us out here with similar problems and lots can be done so don't worry. Great help is out there.
Thank you NoisyNora, it’s really been useful to share my symptoms this way. I don’t feel alone and I think it’s really important to know that we can share it this way. It’s been a great comfort to share our concerns and feelings this way. I’m just wondering if you got side effects from taking B, my concern is that I’m taking other medication for another long term condition. I know I will have to go back for further consultation with my GP and I will ask to see a consultant for more advice and support. I live in East Yorkshire, but I’m sure they’ll have an ENT team and specialist in this area, but thank you anyway for your kind words and support. Wishing you all the best.Jools
Re you query about B medication: i took 3xday for two weeks but I just didn't feel right - everything seemed dark and oppressive bordering on low mood snd beginnings of a sort of depression. I had nothing going on to make me feel that way and the only knew thing going on was those tablets so I stopped taking them and was back to myself. They did upset my tum slightly too and affected my appetite. That said, I will take them again if I get another vertigo episode as they worked swiftly but only until the dizziness subsides. I wish you well with your appointments and hope you won't have to wait too long.
the medication betahistne seems to be the standard prescribed if you want to get further help and an accurate diagnosis push to see an ENT specialist I did . you need to rule out anything else that might be bubbling away in the background. get hearing tests and an mri. dont leave any stone unturned ,your GP might be correct they see a lot of these things in us oldies but play safe.
Hi Jools, from my own experience recently, I had a complete loss of balance last September which lasted over 24 hours and since then have had problems when walking especially in the dark, I do a lot of wall walking (feeling my way along, not standing on!!) My GP immediately diagnosed Menieres and prescribed Betahistine. I was told only to take when I had an attack to stop the dizziness. After contacting the Menieres helpline they said that is the wrong way to take the medication and what I described didn't sound typical of Menieres. I was advised to contact ENT. I have suffered with Tinnitus for over 4 years which is very loud to the point of masking out any other noise, I cope quite well during the day but use a sound therapy unit at night. I have moderate/severe hearing loss, both ears. Anyway, I saw my ENT consultant in December who said it isn't Menieres and not to take Betahistine as it would do more harm than good. I am now waiting for the results of an MRI scan and I have been referred to the balance rehab clinic/physio. So I completely agree with other comments, it is best to be seen at ENT, they have more knowledge than GPs. Interesting about your experience of hearing voices, I sometimes hear someone shout and also something tapping, otherwise it is just like a wind tunnel noise on the left side and someone with a chain saw on the right! The support is out there I hope you get some answers. Good Luck!
Although my T was initially noise induced from when I was a child, over the years due to what I suspect from allergies, I have developed many of the symptoms you described. I was diagnosed with eustachian tube disorder and BPPV as well, those of us in our special club learn to deal with these symptoms day by day. But I have found that the vestibular balancing exercises work well and force the crystals out of the ear canal. And back to where they belong. You can find these exercises on YouTube and have a partner help you do them.
Stay away from Benadryl. And clearing your ears manually by opening your mouth or gently blowing can help clear the air canal as well.
I sympathize with you about noise blending together. I find that so overwhelming for my brain that I cannot be in environments that include more than one thing I need to hear such as someone’s voice over music. I just avoid environments like that now.
Thank you Marlayna.I don’t have definite diagnosis of Menieres, just a possible. I don’t have vertigo, but a strange dizzy spell every now and then, since taking Betahistine it seems to keep this in check, but doesn’t work with Tinnitus, which other writers have already pointed out that it doesn’t work for this condition.
It sounds horrendous what you are suffering. I wholly sympathise with you and wish you all the best. I plan to get a hearing test soon and seek to see a ENT specialised after I get the hearing test results and also give this medication a go. I have a combination of constant drone sound like the traffic on the motorway at night from a distance with a constant whistling sound with it and occasionally music way in the distance and a woman’s voice singing at other times, especially when it’s generally quiet. I also from time to time wake up after hearing a shout, words spoken out loudly or calling my name out, at first it was very scary.
There are four symptoms associated with Meniere's disease. It is usually diagnosed when three of them are present or there is a history of three of them (I'm in the USA, originally from the UK). They are: hearing loss, in the first instance often one sided. Vertigo and usually quite severe vertigo rather than just momentary dizzy spells, tinnitus and a feeling of fullness in the ear. I had three of these (although the vertigo had gone several years earlier, after two years of really horrible vertigo spells; in that respect I was lucky) I have hearing loss that started one sided and more than a decade later moved to the other side as well, and I have tinnitus. Apart from very occasionally I don't experience a feeling of fullness in the ear. Yes Meniere's is difficult to diagnose and difficult to treat. I was prescribed a diuretic which also lowered blood pressure and had to stop taking it and I was also taking Betahistine (betaserc, serc) which I continue to take although for me I don't really see that it does anything at all as it is primarily for dizziness/vertigo. As a layperson it sounds more like labyrinthitus than Meniere's. But I am just that, and have gone through all the same questioning.
Thank you PABLR, I’ll get an appointment with an ENT consultant as soon as I can, but realise I may have to wait some time for an appointment. Meanwhile I’m trying to understand what’s going on and with everyone here contributing to this thread, has for me been a valuable source of information and advice.
Thanks again.
Jools
Hi Jools777 This is a relief to read though I'm sorry for what you're going through. I was initially diagnosed by one ENT consultant with menieres disease but a 2nd consultant said vestibular migraine was more likely as my hearing loss is high toned (I have what they call ski-slope sensorineural hearing loss - my graph dips dramatically down as the tones get higher) The consultant said menieres is usually accompanied by low toned hearing loss so ruled it out but I feel I'm experiencing classic meniere's symptoms so I have my doubts about the migraine diagnosis.
I get episodic vertigo, tinnitus (not musical,a constant hiss that gets louder over a 10-14 day cycle)ear pressure and pain then feelings of extreme fatigue. I haven't fallen...that is worrying that's happening to you. I have had periods where I was tripping outside when the vertigo came on and felt as though my feet couldn't function..It was frightening but that has improved recently.
I still feel unstable walking in the dark and tend to hold on to furniture if I'm up in the middle of the night. I often feel my bed is tilting when I'm lying down. I used to have spinning vertigo but now it is more a feeling of disequilibrium and I can't judge depth/downward steps very well, as if I can't trust my feet. After an attack my voice sounds hoarse and croaky to me but others say it sounds the same. I had a phone appointment with a neurology consultant who discussed vestibular migraine but he admitted parts of my symptoms did not fit the migraine pattern.
I also get random surging noises and occasionally a shout or a babble of voices at night. I thought I was going mad sometimes!
I tried betsahistine but it made me feel ill. I've since learned I was on a very high dose 16mg twice a day! So you will hopefully feel better on a low dose. Let us know how it goes.
I also tried prochloperazine but couldn't tolerate that either. I now take cinnarzine for the vertigo plus occasional diazepam for tinnitus. It can drive me crazy sometimes. It is so debilitating and hard for others to understand.
This forum is a godsend. I usually try to focus on the calm days and don't feel so sick with it now which is better as I had spells of vomiting before. I try to eat healthily about 70 per cent of the time and am glad I can enjoy my food. I wear two NHS hearing aids...first I got just one in 2014 and had an MRI then.
All the best and let us know how you get on. 💐
🌼
PS I was feeling a but sorry for myself when I wrote this last night. Better today! Hope you get some relief from it. xx
Hi Fuzzywuzzywasawoman, sorry to read that you have been through such an ordeal. I’ve had vertigo and sickness years ago now and it was very unpleasant, they diagnosed it as middle ear infection and prescribed anti sickness medication and antibiotics. It took two weeks to get it under some control, and months for it to completely clear, never had it since, but it does make me wonder whether this could have been the start of things. I know it’s impossible to say precisely, but I can’t really remember when I started noticing the Tinnitus, I think it’s been gradual over the years, but the last two years have been much more noticeable, particularly these very odd dizzy spells. I can look ahead and everything stays in place (focused), so it’s not vertigo. I can move my head without feeling dizzy. It just occurs momentarily and goes at any time. However, if I get up during the night it’s much more noticeable and quite disturbing. My G.P explained that when you lie down the fluid in the semicircular canal determines your position, so when you get up, the fluid and the tiny hair receptors let the brain know what position you’re in, as some of us get older these hairs can diminish and the receptors take longer to work out your position and hence the dizzy spells. However, another condition: Benign paroxysmal positional vertigo (BPPV) can cause the same symptoms. It’s very tiny grains of debris in the semicircular canals. However, it’s difficult to diagnose, but he seems to think it’s Menieres. As already mentioned, it’s probably a good idea to request an ENT appointment when I see the the G.P next time, after I get a hearing test in a couple of weeks time.
Apparently the Betahistine I’m on can be increased to 48 mgms a day! As mentioned before I’m taking 24 mgms a day and it is helping with the dizzy spells. However, I don’t really want to stay on this medication long term. So I’m hoping I’ll be able to manage this it in the future. As the saying goes, time will tell.
We all feel down at times and Tinnitus is a debilitating symptom and quite disturbing at times. It’s good to share how you feel, talking or writing about how you feel at the time can be very therapeutic and most importantly it’s good to know you’re not on your own. It’s very hard for anyone who doesn’t have this condition, including G.P’s to understand what it’s like to live with, and hence they may not be as sympathetic as we would like them to be at times. Just to tell you that nothing can be done and just to live with it, is extremely unhelpful.
So sorry I’ve said more than I intended!
Wishing you all the best and thank you so much for sharing your experience.
Jools
Hi! I,m 74 and have had tinnitus for a long time, now I,m experiencing the same as yourself, the noise is bad at night. I blamed the Bisoprolol I,m taking for my SVT. I went to see a specialist quite a few years ago and was told it’s not curable so I just lived with it. It is causing me concern now as it seems to have started in my other ear too. I don,t like going to the doctors because I feel I,m always fobbed off with drugs that have side effects which add to the misery. I can,t advise you sorry but will follow any answers you get.
Thank you Delnoleen, it’s not right you are told to live with it. I know I’m not a very assertive person, but sometimes you have to insist on getting help. Some G.P’s under pressure can just fob you off and come up with this crass response or just give you medication. As I got older I learnt to be a little more assertive if I think I’m being overlooked or fobbed off. I don’t like going to the doctors because you feel, rightly or wrongly, that they may have some power over you. It’s like they have your life in their hands. I’ve had that experience with some doctors in the past, just telling you to get on with it. Sometimes insistence can pay off and you get the service you deserve. Wish you all the very best.
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