Labirinthitis- blurred vision, tinnitus and brain shifts

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Hello, I've been suffering from (most likely) labyrinthitis for over 3 months now. It started with lightheadiness and nausea , but cleared after a week. 3 weeks later it came back and has been with me ever since (9 weeks now). I have a blurred vision 24/7, tinnitus and what I called brain shifts ( feeling like my brain is moving inside my head) and that's mostlywhen I go to sleep or walks up. Don't have any spinning , just feeling lightheaded. During the day I can have hours when I feel ok, and hours when I feel like I'm extremely ill and spaced out. I'm off from work on and off. Went to ENT private and have no hearing loss and my balance seems ok too, just this weird feeling in my head. Ears hurt from time to time, feel blocked, and my vision is a nightmare. Was told that it may take 3 months to clear. At almost 10 weeks, I don't see much improvement. I try to walk, run, sweam and it helps, but I never know when the 'ill' feeling will hit again. Had maybe 3 days all together when feeling a bit better, but never symptom free. Started acupuncture last week, and will see how it goes. Has anyone had similar symptoms? Any positive stories to keep me going?

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  • Posted

    Hi Paula,

    Have you actually been diagnosed with LAB by the specilist? smile

    I would be starting Vestibular exercises if i were you as it will help re train your brain and vision. Are you taking any vitamins to help? smile like fish oil

    I have been diagnosed with Vestibular Neuritis and like you i have good hours and bad hours. Very unpredictable but we just have to push through till our bodies sort themselves out.

    My vision was really bad for the first 2-3 weeks (everything was out of focus and blurry) i could barely walk in a straight line and leaned on things a lot to help my balance because i felt so blurry and light headed everything was 'off'. It is a lot better now since im on some vitamins and have been doing the exercises however i do still have VN and possibly Vestibular migraines as well but im waiting to talk to the specilist about that and see what he says.

    Besides the attacks of random dizziness i also have a heavy feeling in my head and/or pressure in my head which is pretty much constant until i go to sleep, light headedness, anxiety, nausea and now occasional blurred vision but that is getting better.

    I am only on week 5 of having VN so have not been suffering long, however that does not mean i hate it any less. It can be so debilitating and i feel sympathy for all the long term sufferers. I hope it all comes to an end for us and doctors find a better way to treat these debilitating symptoms.

    Unfortunatly the improvment we notice is measured in weeks and months, not days.

    It would be a good idea to keep a journel if you have no already started one smile

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    • Posted

      Hi Charlotte,

      Thanks for that and I'm sorry you are suffering too. It's very difficult to accept these weird symptoms and I also have anxiety. My GP said VN, and my ENT didn't want to put a name on it. He just said that I have a mild balace upset and it would pass. Also got some exercises but they don't make me dizzy in any way, so not sure if that's helpful. My balance is as good as it was before, just feeling light headed and pressure in my head and ears. Had blood tests done and a CT scan- all good. I'm taking vit b, c and d, and fish oil too. At the very start by balance was a bit off but could still walk in a straight line. Very glad you are seeing improvements, and I hope I will start seeing them too. 

      Which exercises are you doing? There are so many, and I try to do some every day, but as I said, they don't bring any symptoms up, so not sure if they are helpful.

      Plese keep no touch, hope to hear you're fully recovered soon.

      many thanks,

      paula

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    • Posted

      Hi Paula,

      You are definatly right about that, it is hard and weird to accept these symptoms as they can be so debilitating and discomforting. Just because we look ok on the outside does not mean we feel fine on the inside.

      I am still waiting to see my ENT (couple of weeks) my hearing is also fine but every couple of days ill still get ear aches but they arnt constant.

      Have you been put on steroids or any prescription medication to relieve the symptoms at all for you?

      The exercises don't make me overly dizzy either but i still do then to make sure i am testing my brain and eyes anyway. There are lots of you tube smile or if you see a Vestibular Therapist im sure they could target some specific exercises for you to try with your vision problems that might help.

      I also had a lot of neck stiffness because of VN which i went to an osteopath for and that helped with the stiffness quite a lot! However is not the magic cure to my problem haha i only had one session and felt better in terms of stiffness though smile

      Do you know any of your triggers? Food? Menstral cycle? Motion? Lighting? Orrr is it all unpredictable smile like mine haha although there are certain foods that make me worse (high salt)

      I hope we are both fully recovered sooner rather than later! However only time will tell and we have to try stay positive even though it can be really hard!

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    • Posted

      Hi Charlotte,

      i didnt get any meds because apparently they slow down the compensation process. My ENT said that it's better to heal naturally. Had neck stiffness at the beginning too, but it went away after the first 2-3 weeks. Also get occasional ear pain but it doesn't bother me at all. Have constant ringing too, but can live with that haha

      Nothing seems to be triggering it which in a way is frustrating. No matter whether I lie down, walk, run, clean or whatever else, I can have a spell of feeling better or worse. Sometimes I can tell in the morning how the day will go. If my vision is worse, I'm feeling worse. Sometimes my vision seems better ( not perfect though) and I feel better overall too. The worse is that I'm never symptom free. I had a good day 2 days ago and it was great, but then back to where I started. Tonight also my brain shifts or zaps came back and it was uncomfortable ( maybe that's due to stress...) is your vision completely back to normal? Will definitely try doing more exercises. My ENT said it will go in the next 2 months, and if not he will send me to get some exercises. 

      I went through a mental breakdown 2 weeks ago, but now I'm trying to take it one day at a time, and I'm able to relax more.

      Lets keep in touch smile wishing you fast recovery and positivity!

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    • Posted

      i didnt get any meds because apparently they slow down the compensation process. My ENT said that it's better to heal naturally. Had neck stiffness at the beginning too, but it went away after the first 2-3 weeks. Also get occasional ear pain but it doesn't bother me at all. Have constant ringing too, but can live with that haha [biggrin] ?

      Nothing seems to be triggering it which in a way is frustrating. No matter whether I lie down, walk, run, clean or whatever else, I can have a spell of feeling better or worse. Sometimes I can tell in the morning how the day will go. If my vision is worse, I'm feeling worse. Sometimes my vision seems better ( not perfect though) and I feel better overall too. The worse is that I'm never symptom free. I had a good day 2 days ago and it was great, but then back to where I started. Tonight also my brain shifts or zaps came back and it was uncomfortable ( maybe that's due to stress...) is your vision completely back to normal? Will definitely try doing more exercises. My ENT said it will go in the next 2 months, and if not he will send me to get some exercises. 

      I went through a mental breakdown 2 weeks ago, but now I'm trying to take it one day at a time, and I'm able to relax more.

      Lets keep in touch smile wishing you fast recovery and positivity!

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    • Posted

      Your doctor is right they do slow down the process but it just makes some of the dizziness more bearable when i get the attacks haha but i dont take them every day and try my best not to take them.

      Do you drink a lot of water? smile

      Since having VN i am definatly more exhausted than what i usually would be, think my brain is over working itself as well as my eyes.

      Im not too sure about the brain shifting or zapping i have never had that before so wouldnt know what it relates too but hopefully someone else will also see this post and be able to share their experiences and advice on it all too smile

      My vision is now usually pretty good yes, however if i am having an attack or feeling quite light headed then it can get a litte blurry and slow during these times but that doesnt happen on a daily basis. More like a weekly basis in my case. Make sure you get a long enough sleep in the nights.

      Stress can definatly make things worse and depending on what you do for work too then definatly take it easy (i work with computers and have to take breaks away from the computer regularly or everything goes super fuzzy now) i only recently started work again the other day and im taking it slow because i dont want to over load myself and stress my body out.

      Its ok to have a bit of a breakdown and completly understandable!! The 'not knowing' when this will end can be quite terrifying and it scared a lot of us.

      Have you thought about talking to someone? I have heard a few people have amd apparantly it helps, this condition feeds off anxiety aswell. Its a bugger haha

      Yes ofcourse! Absolutly keep in touch! smile

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    • Posted

      I'm trying to drink as much as I can smile also work in an office, and computers can be challenging. Have been off for a week, and now I'm on 2 weeks annual leave ( had to cancel my travel plans, and I'm trying to use this time to relax). Initially, I managed to work full 2 weeks, but then things went a bit worse, and it was difficult for me to cope.

      hoping for better days soon smile

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    • Posted

      Yes i would definatly take this time for your body to relax, good idea smile lol i am gradually getting back into work, im afraid if i push my body to hard it will just end up back at square one so im trying my best not to get stressed at work and just gradually introduce it back in. i had 4 weeks off work! i was not happy, its a vicious cycle. I am mad because im sick, which makes me more stressed, then stressed about money because i am not at work and then if i do back to work i can be scared to over load myself haha silly anxiety and stress smile  

      Have you been keeping a journel? or even had your ears cleaned before? i had mine done, it helped a little smile 

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    • Posted

      Yes, I did have my ears cleaned- it definitely helped with pressure I was feeling.

      Im sorry to hear you were off for 4 weeks! The stress/anxiety is very interesting.... I have never had anxiety before! I always saw myself as pretty strong mentally, but this illness just got better of me. I think, the key is to accept that this is how we will feel for a little bit longer, but it's gonna pass. Everything ends at some point, right? Easier said than done of course. I've been fighting with my mental wellbeing for 9 weeks now, but more I accept this, the better it gets ( or at least I see better hours/days more). I'm due to go to work on Monday, but still don't know if I'll manage- really want to go back though!!!

      i was keeping a journal, but then had a breakdown and deleted everything lol will start again I think.

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    • Posted

      What a weird feeling right?! made me pretty dizzy while having it done haha.

      Neither have i! but this has really tested me quite a lot and i feel exactly like you. I sure hope it does pass! or end at some point for us all! This is not fair on anyone, and i certainly don't wish it upon my worst enemy. I am glad you see some improvment in your mental state as that is really important to not get too low in! Going back to work is a good feeling because i felt 'normal' again however it was really hard. We have to find the balance between and going to work and not over doing it and listening to our bodies while their in this condition. i suppose it is all baby steps, taking it one day at a time. 

      Rest up the rest of the week and listen to your body, keep up with all the vitamins and water etc. maybe start some head exercises? although they tend to make your worse before you actually start to get better and see improvment. 

      Might be a good idea to start another one lol when im having a bit of a bad moment and feeling pretty down its good to look over and know that there was improvment or there is improvment happening. Progress for disorders like ours are made in weeks and months .. not days unfortunatly. So somethimes we forget what the first or the fourth or even eighth week was like si its good to keep a brief journel i think even though it does require time and effort. It would also be good to keep in terms of next time you see the specilist you have all your notes etc. smile they might understand a little better about your condition then. I dont know about you but whenever i go to the doctors if i have not already written down my main points of what i want to talk about then usually i forget half the stuff and the doctor only really gets half the story lol sooo in reality the diagnosis could be wrong if he does not have all the info? lol smile 

      Feel free to message me if you like smile that way we are not taking over the whole forum i guess lol 

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  • Posted

    I have to agree with ENT,  This is not labyrinthitis,

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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    • Posted

      The initial symptoms were probably due to vestibular neuritis.  The poor vestibular compensation then led to symptoms three weeks later.  This is indicated by the tinnitus, the ear where the vestibular neuritis was.  This is also suspected from the normal hearing results, as vestibular neuritis does not affect hearing (whereas labyrinthitis does).

      The blurred vision is due to a less than perfect vestibulo-ocular reflex/oscillopsia, caused again by the poor vestibular compensation.

      It may go away on its own, but if it does not then vestibular exercises will be required to compensate.  You will need to do these exercises for a long period (months).

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

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    • Posted

      Thank you very much for your comments. I really appreciate you taking time to advise me. I'm very much hoping it will go soon- I'm trying to be very active every day in order to help the compensation process. 

      Your help elm is much appreciated.

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