Fantastic! A saviour in my time of need.

Sweden

Please let this site stay her for ever. It has helped me tremendously through many years. My condition first appeared in 2013. Was finally helped by a doctor who took my problems seriously. Ended up with an physiotherapist tha was specialized on treating this condition. Started doing VST and I got well for a long time. It has since returned with various strength. I can however do the VST and then eventually overcome most of it. I find your site fantastic in describing this condition and I always return to it. Especially the symptoms descriptiond to get encourage since this condition have a lot of nasty variations. You have nailed in your oversight and I can easily say that I recognize every one of these symptoms. Thank you, thank you and thank you for this.
Best regards
Staffan

Online

Maidstone

Forgot to ask if anyone has experienced pain/strange sensation in ears when lying down on your side, like a pressure. This has been going on for weeks now & makes sleeping properly a nightmare. Thank you.

online search

Maidstone, Kent

I\'m 5 months in now & never thought it would last this long!! I have had a particularly bad week with another flare up. ENT waiting list is 7 months!! I have decided to pay to see a VR therapist as I really have had enough. I am mostly positive & a great believer in helping myself as much as I can but must admit I am struggling at the moment. Any tips you find helpful would be appreciated as i know you understand just how awful this thing is. Thank you.

Google

UK

Hi,

Thanks for the information. I\'m 4 weeks in and so fed up. Having had a virus, then Covid, I ended up with this. Hoping it\'ll pass but you just never know what will be. I have a few good days, then get hit by a bad one, like today, when you just feel incapable. Not fun.

Menieres soc

York, UK

Thank you for this website, this and info provided by Menieres Soc are by far and away the most useful advice I have had … the local GPs we’re not really that helpful.
So I am in week 9 and am worrying about long term impacts, at the moment I am unable to work … my brain fog leaves me unable to think beyond individual tasks ….
I am seeing a specialist in 3 weeks ….
This website provides both re-assurance (you brain can adjust) and real concern (continue to have symptoms after a number of years), stressing about where this will end up.
Thanks again.

Facebook group

Poland

Hello!
My name is Zuzanna and I live in Poland. I am writing to you, becouse like so far your side and community has been biggest help for me in diagnosing of my problem...
... and speaking of the diagnosing I can not get any official and accurate one! Where I live, which is Poland, there is very little known about vestibular issues. I have been to several ent doctors and all of them are saying they dont know what is causing my symptoms. My symptoms are: one day out of blue woke up with veritgo and nusea and outbalanced with loud tinnitus. And later tests showed hearing loss for high frequencies. Since then I did MRI test (clear) and VNG one (55% loss on my right side at affected ear). And its pretty much it. Labyrinthitis fit the profile very much for me, but every doctor I spoke about it they didnt know this illness. (riased eyebrows at me in surprise!) Some of them indicated that maybe its vestibular neurotis... but excluded that becouse of the hearing loss for high frequencies. So that\'s how my situation is looking now. No official diagnosis. No help from any side. I feel hopless and worried of my life. Also we have no VRT centres here which lives me all alone on my own. I wonder if by any chances you provide any help for people suffering around the globe. I feel like you are the only place in universe which can help me.... I am aware that you can not provide me any help. But tell me what would you do in my place? With all this symptoms given? And no help from doctors? How would you act and what would be your steps towards recovery? I know that there is very little chance you will answer or come with any solution.... but HAD to try it\'s only thing left for me.
Hope I will get some answers from you,
Zuza

12 yrs ago

england

for some reason it trying to post if hard on here, i do the form etc and it doesn\'t post i am trying again

But it has made me wonder if sufferers are trying to post and are unable too,

i was wondering why when i leave replies to posts with helpful info for the past 9 mths why people aren\'t replying to let me know, how they were coping.

if people kindly reply to your posts when your asking for help do please try and reply to them, to let them know how your doing or just acknowledge their reply

My audiologist

Uk

Nearly two years so far of suffering with constant drunk like and off balance feeling. Took a year to find the right specialist who was a audiologist and diagnosed me with a vestibular disorder after months of different tablets , vertigo attacks , manoeuvres and no further forward. Continuing to do vestibular rehabilitation when my body feels it can ‘be bothered ‘ to put myself through more uncomfortable situations. Currently working full time again after a few months off to try push myself but struggling to see the light at the end of the tunnel. I’m only in my early twenties and worried this is my new normal and permanent condition... can anyone give advice of coping mechanisms or how they have over come this debilitating condition please ? Hoping to fly soon but so anxious about this too!

Digging through google for help!

Nebraska

This site has helped me so much! Best info I’ve found! I was never officially diagnosed but I had all of these symptoms related to a bad sinus infection I needed surgery for in 2019. My symptoms lasted about 6 months at their worst and they were debilitating! Talk about an invisible disease people did not understand. I had a few days through 2020 where it came and went but for the most part it cleared up. Then! I recently had to take a plane trip and! I had to stay on the 68th floor of a hotel! Now all of my balance and dizziness is back in full swing and I’m so terrified it will never go away. My anxiety had been through the roof! And I know stress doesn’t help. Anyone else have issues with a flair up after travel???

recommended

devon uk

l have had this condition for 4 years, then practically went for ages and now get bouts of it now and again, it seems to be when l look up more than usual or over do it and certain things can trigger it off so 8 years later and not entirely gone, and now VERY worried as l have heard this vaccine can make you really dizzy, l am too scared to take in case it returns, in fact petrified , has any one else had these thoughts or actually experiened this?

searching for infor on labyrinthistis

Massachusetts, USA

I was recently diagnosed with labyrinthistis and am on Meclizine 3x/day. I am 68 years young. Active with local Community House music programs. This has isolated me more than I was already due to Covid. I’m having a hard time dealing with this ailment. Looking to meet others for support and best ideas how to live with this.
Thank you,
Deb Morrison

Referred by someone on the Vertigo Support Facebook page

Australia but I am contacting you on behalf of my mum who is in the UK

Thank you for this amazing and informative website. You must give so many people hope and I have found it quite difficult to get clear information so this is amazing. Would have saved me a lot of time if I can come here first.
My mum is 86 and suffers terribly with vertigo. We think she has or had Labyrinthitis. She has been in bed and very scared for 12 weeks. She had a week where it disappeared and now it is back.

got labyrinthis looking for help

Birmingham

plz help does it effect your eyesight

Google search

Cheltenham

I had Labyrinthitis 20 years ago for about 6 weeks then thankfully it went, I\'ve had viral conjunctivitis for the last 3 weeks and it seems to have triggered the Labyrinthitis again with headaches, nausea, dizzyness , etc etc. Has anyone else caught it from another infection please ?. P.S. this website was very useful last time thanks.

Google

Essex

I’ve been suffering on and off since Feb, had a really bad cold and then bang, a panic attack whilst at work out of nowhere, followed by two weeks of bad symptoms, they calmed, went on holiday and then had a little blip in a supermarket where the light seemed to make me feel a bit off like I was wobbly and going to pass out but that went as I went outside, then towards the end of June the dizziness came back, like a constant swaying, off balance feeling. Have had panic attacks since, worse when around people or in small shops, lighting plays a little part, I’ve stopped counting the weeks as the depression has got a lot worse. Think I’m on about week 13 of this new attack but it’s constant, every day, I’ve tried walking a lot as I know that should help, doing vestibular rehab vids on Facebook daily but it just seems like it won’t ever go away. I’ve been a strong person all my life but this is really getting me down and affecting my relationship with my partner who I know must be fed up and I haven’t seen my friends much. This site has given me some comfort in dark time’s, I’m just praying that some day soon this will go. Prochloperazine didn’t work and neither has Betahistine. My GP is waiting for advice from ENT. I just need to know that it will get better and I can go back to normality one day. What a horrrendous illness, wouldn’t wish this on my worse enemy. Sorry this seems like a rant but I just needed to let it all out.

Thanks

Google

UK

Had VN/labs for over 4 months now. Tiredness and dizziness has reduced but still feel like I am living ‘life through a lens’. Has anybody had much luck with seeing a VR therapist? Did it make a difference?

Referred by a friend

Camberley, Surrey

My wife suffered a severe dizzy attack whilst on holiday in California in 1993, and spent most of the 2 weeks in bed or hospital having tests. We\'ve visited several ENT consultants, and even received treatment at the Dove Clinic in Twyford for severe fatigue/ ME. She\'s been prescribed the usual drugs in the past, but nothing seems to have helped. Long car journeys, flights and even short boat trips can trigger an episode. She\'s even suffering now, which may have been brought on by stress over the loss of our dog a few weeks ago, and bringing a puppy into the house (lots of looking down seems to trigger it).
I\'ve come across the Neuro-otology department in London (UCLH). I saw a reference to it on the home page, but I was wondering if anyone had had any success in attending that clinic?

Google

Wales

I’m really struggling with what the Dr thinks is Labrynthitis. I’ve had it for just over two weeks. Is it normal to feel slightly better one day and then terrible again the next? The ringing in my ears is so loud, like crickets. I haven’t been sick but very dizzy when I stand up. I’m convinced it’s something more sinister which isn’t helping. Blood tests came back normal.

Google

Wirral

I have now had symptoms of labrynthitis for 4 weeks now, which gp is still calling “dizziness”. Feel completely useless, unable to do anything - not even read a book. Symptoms include :

Feeling of swaying, worse when walking but constant - even when asleep!
Headache
Light sensitivity
Cotton wool feeling inside head
Ear fullness and dull ache in front of ear and jaw
Sensitivity to sudden sounds
Heart pounding, anxiety
Unable to focus on near objects
Difficulty reading on laptop - makes symptoms much worse

Was prescribed nasal spray and Stemetil by one dr and then told by another doctor that they wouldn’t work and this will get better in a couple of weeks on its own. I don’t feel anyone is taking this seriously or understands how debilitating this is.

I looked it up on google

Selsey west sussex

I have had dizzyness fir 5 and half weeks GP says labyrinthvitus I am really scared it’s not going to go as see no improvement. What’s worse it will be hard to be referred with the current situation I am so scared