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Labyrinthitis - "brain shifts"??

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~Dragon~
~Dragon~

Okay this is week 5, my first ever experience of vestibular problems. It started in horrendous fashion - I was swimming om my back and suddenly thought I was having a stroke. The most frightening experience of my life, and quite frankly I'm still traumatised by it. Still haven't managed to summon up the courage to go swimming! After an hour or so of assistance at the poolside, my OH picked me up and I went off home to bed. It seemed to clear within a couple of hours so I went out shopping!

Next day I woke in a right state. It felt like I'd drunk 3 bottles of wine and had the hangover to go with it all at the same time! Doc gave me Stemetil and told me was either BPPV or lab. After a few days of awfulness, I finally realised I felt better if I moved around more - I suppose the start of the compensation process. I didn't feel I had hearing loss but did have the fullness feeling in both ears. I also felt more comfortable sleeping on my right side, and in fact had a further spinning episode just after I had laid down on my left side, so avoided doing so.

I then wondered if it was BPPV rather than lab and pestered my doc to do the Epley. They didn't do it, had to be referred to physio, six week wait, went private!! Wonderful vestibular physio performed the Dix-Halpike and confirmed I didn't have BPPV and didn't need the Epley. Why on earth my doc couldn't do that I don't know! She gave me lots of advice about the condition and showed me some exercises to aid compensation. Since then I'd felt a lot better, apart from having what I describe as brain or head shifts, and lots of pressure in my head especially when I'm tired.

Sadly, since a few days ago, I appear to now be getting worse again. Have actually had some dizzy spells laying down in bed - they had gone completely and I was feeling practically 100%. Is this what I am to expect now? Does anyone else have the strange head sensations that I described? Could I have Vestibular Neuritis rather than Labyrinthitis? When do I go back to my doc - I already feel that she dreads seeing me - have so much else going wrong at the moment! Could the stress I'm suffering because of my health problems be hampering my recovery? So many questions!! Would love to hear from anyone who's story is similar to mine biggrin. MTIA!

7 likes, 134 replies

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  • loll
    loll

    Posted

    Hi i had the same as you in 2010, iv never in all my life had anything like it ,one day i was well and the next i felt as though i was coming down with something like a cold that never emerged. It felt as if i had sank a bottle of vodka!! I would wake up every morning for work bounce off the walls and wonder what the hell!! I went to my GP and was told it was Labyrinthitis and it would run for about 12 to 14 weeks .After the 4th week i was convinced it was something more sinister and in true drama fashion i paid for a MRI scan in Manchester.It came back clear thank god but i too was at the doctors every 5 mins .My symptoms were dizzy extra sensitivity in my ears and ringing in my ears .I turned all herbel and started taking Echiancea and sniffed crushed garlic haha (desperate or what) In the end after about 13 weeks things started to subside and i started to relax .I think the more you think about it the worse it feels if you can try and see the funny side as i did when my family and friends started taking the micky out of me i started to laugh and it felt good .xxxxxx I hope this has been a little help to you...........good luck in your recovery........
    • paula57888
      paula57888 loll

      Posted

      Hello loll, thank you for your encouraging post. I'm in my 12th week. My balance and dizziness are good, just a bit lightheaded, but I'm still with ringing in my ears, blurred vision and feeling heavy in my head. I feel like I'm ill all the time. Can I ask how long it took after your 13th week for symptoms to completely go away ? Xxx

    • mark63561
      mark63561 pili41981

      Posted

      I had symptoms again last week for 24 hours, deaf and dizzy but seem to be ok now fingers crossed.
    • rumi_33530
      rumi_33530 loll

      Posted

      Hi currently I am in 6th week of labrynthitus. Initially things were worst I couldn't walk even or I would fall apart if try to walk. Now I am feeling heavy headed Ness a sliding sensation of vision whenever tilt head on right side. A knocking and ringing in ear sometime a piercing pain. Please guide How much to wait. What are the exercise and what to eat that can expedite the recovery and normalise my daily routine

      Regards

    • maggie34
      maggie34 rumi_33530

      Posted

      Hello Rumi This came through to me even though I was in this thread in 2013. I know how horrible it is and I think it took me a year to feel normal. I had a bacterial infection and have lost the use of the labyrinth on one side. I had medication something to do with sea sickness (can't remember now) but it was 6 tablets a day and I needed this for months,also i had to wedge myself straight in bed or if i turned then i would wake up and the room would spin. The balance nurse taught me exercises and i still do them. You do need help!!!! Both from the GP and the balance nurse, don't wait. Good luck

    • Guest
      Guest rumi_33530

      Posted

      Hey rumi. Hows the ringing in the ears right now ?? Did it fade away ?? 
  • TGH_1
    TGH_1

    Posted

    Hello to you both,

    I am currently in my 5th month of labyrinthitis and still unable to work. I am a sister at the local hospital and can honestly say this is one the most distressing disorders that profoundly affects your ability to function on so many levels. I will try and keep things brief but symptom wise I have a really bad "thick" head feeling spaced out like I am not on this planet, photo phobia, nausea, dizzy (no spinning) bilateral tinnitus, sensitive to noise, horrible sensations in my ears, pressure, whoosing like my ears and head are going to explode. Visual problems, distance vision is blurred, near vision on reading look almost 3D and the words move around on the page. If I go into a store or a supermarket my vision goes crazy and I feel really unwell, sick, dizzy, light headed like I am going to faint. I have an intermittent tremor which is def related to this and extreme fatigue. In the beginning I slept for England, weird sleep, night sweats and feeling like I was falling through the bed. I have cognitive problems like difficulty concentrating, short term memory problems and doing stupid things. I couldnt drive for 2 months I was so unwell. Loads more things too many to mention. The doctors I think have limited knowledge on vestibular disorders and treatment. If you are still symptomatic after 8 weeks I have been told that you need to see a neurotologist this is ENT consultant who has done further training in vestibular disordersand some vestibular testing should be done as a minimum. MRI brain and bloods should be done to rule out the more serious causes of dizziness etc. From what I have researched its vital to get a proper diagnosis and it seems that the brain needs to compensate for the inner ear damage(which will not repair) This compensation can occur quickly by going about your normal activities but for a lot of people including me it is taking a long time. This is where vestibular rehabilitation exercises come in (VRT) and they are vital in aiding your recovery. The biggest threat I think once you have your diagnosis is avoiding anxiety and depression as these symptoms are horrendous and they are there 24 hours a day seven days a week until you start to get breakthrough days. Even then the recovery is not linear and you will have some good days and then many bad days again. In my experience this seems to be part of the recovery. Lots of people with vestibular disorders do end up on anti anxiety and anti depressants and thats completley understandable as this condition is your worse nightmare. Medication wise you may have been given stemitil or serc which is fine to take initially but if you can get off them do as it slows down the brain compensating. I havent found any tablet that helps it just seems to be time and thats hard when you have a full time job to hold down. I am still fighting to recover myself, I have improved but only very slightly as each month goes by and I still have days where I am unable to function as I feel so unwell. Two sites I found that have been a life line to me, they are VEDA website which is excellent and explains everything and also dizzytimes forum. Some fantastic people on there who have gone through this and also a resident specialist to give you some advise. Good luck to both of you with your recovery.

    Donna

    • jamie93548
      jamie93548 TGH_1

      Posted

      hello was reading your symptons asnd they are exactly the same as mine just want to open this thread so i have some to chat that understands this very complex disorder is that ok would like to know are you still getting your visual problems with words ?
    • sean01244
      sean01244 TGH_1

      Posted

      Hi Donna

      I know its been a year since you posted this thread but I can't believe how laberynthitus effected you just like me.

      I was working away in October 2013 and I woke up around 3am and the room was spinning, I couldn't lift my head without wanting to vomit and I crawled to the toilet to be sick. I managed to alert the hotel staff and they phoned an ambulance. I thought I was having a stroke.

      I was in hospital for 2 days then sent on my way and was told it would take a couple of weeks to calm down.

      I was off work for a month, when I went back to work I was far from right, I put on a brave face an just struggled through each day. When I got home in the evenings I would just go straight to bed.

      It took about a year and a half for it to go but to this day my head is a lot more sensitive than it used to be.

      Like you say its one of the worst things anyone could go through.

      Hope you have got over it now.

      Sean

    • k84025
      k84025 TGH_1

      Posted

      You summed it up perfectly
    • not_quite_here
      not_quite_here TGH_1

      Posted

      So glad just found you all. Everything I'm reading is me so not losing the plot then! This condition is driving me mad. Had it about two years ago and was so relieved when it abated after 12 weeks and now it's back again. Can't walk without feeling I'm going to fall and even sitting out of the corner of my eye everything is moving on the right. Last time when went the Doc's he gave me all kinds but no joy. The last prescription was for treatment of Schizophrenia which when I read it was a mind altering drug, thought no way! I'm glad no reports of being life threatening but this is so hard to deal with. Everything you do is affected. Has anyone also feeling as I do a sort of shaking inside all the time? Trying to explain to family and friends it's like feeling as though you are drunk without having the pleasure of getting in that state! Wish I could give some good tips but Doc can't help and I've tried big walks, healthy eating and have to say just feeling really down.

       

    • maggie34
      maggie34 not_quite_here

      Posted

      Ps To begin with, I couldn't always get my words out and also felt my short term memory was affected too as well as having no energy. That's apart from the full feeling in the head and the feeling of being about to fall and bending my head and the horizon going diagonal and wedging myself straight in bed so that I didn'twake up in the night with the room spinning. Phew what a condition and people think it is just feeling a bit dizzy!!!! The balance nurse did help me but it was about 9 months after the first diagnosis, having been on full medication too
    • victoria78511
      victoria78511 not_quite_here

      Posted

      I've got vestibular neuronitis I do not have the spinning Sensation I go tinnitus in my left ear Flickr in my left eye I feel like I'm working on sponge and been pulled to the left. I get the shaking cold feeling
    • j62740
      j62740 TGH_1

      Posted

      Hi Donna, Thanks for posting this , I don’t need to post much as you have more or less mirrored my symptoms but for me the fatigue has been very bad, e.g. after 8hours solid sleep I woke up exhausted ?? I put up with brain fog, my speech is affected, my memory is affected, I get stuck for ordinary everyday words when talking to someone, noise makes me lose my balance, I am sensitive to certain light it makes me feel sick. My doctor says I have meniere's.

      We just got to keep moving on as best we can!

       

      Jerry

    • crest
      crest j62740

      Posted

      Hi Jerry, sorry I just had to respond to your post when I saw it. Please don't see me as being rude but if you have light sensitivity and noise it's more than likely MAV not menieres. You don't have to have migraines at all either. There are pills you can take which may very well cure you. Worth a try if you not yet tried. It's a migraine in the vestibular system which certain pills can help.light sensitivity and noise etc are huge signs of it. Propanolol, pizotifen and amytryptoline are some of the popular pills. Sorry again if you have tried and know about it. But had to say just in case as so many people are misdiagnosed and live with something they don't have to.
    • j62740
      j62740 crest

      Posted

      Hi Donna, thanks so much for your reply and post, very interesting. In my late teens I suffered from very bad migraine which would completely immobilise me i.e. could only see through corner of vision and poorly at that and the usual sick stomach and explosive headache…extremely sensitive to flashing lights etc.  this could be all conected to my old migraine, I think you could be corrrect

      I will follow up on your suggestions.

       Thanks again.

      Jerry

    • DizzyJules
      DizzyJules TGH_1

      Posted

      Hi, Im was similar, no driving for 4 months, this occured early 2013, I paid for private VRT with a labrynthitis physio specialist within a month. (I wonder if you could ask your GP for one???) In the end I had 12 months off work, best thing I did was accupressure, and then able to do chi gong, meditation, pilates to anything to improve my balance, though straight after any of this its sleep as it exhausts your brain trying to stay balanced. Sleep, exercises and getting out the house is best cure. 

      Unfortunately even now this foggyness continues periodically for me and the siestas, or sitting down remain essential.

      I was lucky I found a different job in my workforce which had one hour lunch breaks and when sitting down I noticed I recovered a little.  Anything sitting down helped me recover ie driving, sitting on train, bus ( though you have to ask the driver to let you sit down before the bus pulls away) and flying, nothing to do with boats!  I am fustrated I still find it really hard to read a book coz of the lack of concentration and retention of what you have read. Also the flicking of pages was hard too. I found sudokos in the Times helped and unfortunately candy crush as they made you move your eyes and I now can grade my foggyness on how I am with the level of sudoko, even to this day!  

      Unfortunately my brain fog and contentration continues, can occur anytime, its more predicatable with lack of sleep so now 3 years later I need 9-10 hrs sleep at night and an hour at lunch.

      It is only now that my discription of brain fog is different or I feel I can describe it better, people tend to understand it better if I give them this analagy-

      At times my brain will suddenly freeze, so when I try to recall events they come back jumbled, for example rather returning as ABC, they return as BCA ACB CBA  BA AC and of course ABC etc, this occurs especially when tired, when under pressure, stress etc, you can never predict it. 

      I dont have too much dizzyness now, I know whenever the ground is uneven and I look great when country walking coz for balance when on uneven ground my arms go out for balance which then I get shattered but hey who cares if I'm out walking in nature I am happy, people just get used to you having siestas. Keep socializing, adapt and keep smiling. 

      Just a warning to you hopefully you will get better, I have got improved with a few hic ups and lots of extra tablets, and need for sleep. The main thing is your health, remove the stress in your life. You could ask tyour GP to go on the 6 week stress course with health in mind (HIM), if you feel the labrynthitis could be caused by stress.  It is fantastic, though you have to be commited and do the homework ie relaxation techniques or guidance they give you.  It's very simplified but helpful but hey thats all we need with the haze we are in and its something free to help which is so beneficial, I so wish I went on this 1.5hrs x 6 course session earlier, they give you handouts too so you can go over it again.

      Good luck, try to remove some stress, exercise, get out the house and remain positive, it can be a long process, but hopefully you will be the lucky one. All the best and hope this helps.

       

    • liza33332
      liza33332 TGH_1

      Posted

      Hi Donna

      I am 37 weeks pregnant and have these exact same symptoms for weeks now and it's awful. I was just wondering if things have improved for you

      Liza

    • carlosbenson
      carlosbenson TGH_1

      Posted

      Hi Donna

      Thank you for sharing your story. Everything that you mentioned In currently going through. The anxiety is awful. I haven't taken any meds for anxiety. I felt I was getting better each day until today. I really hope to get well soon!

      Thanks again

      Carlos

    • jasmin96668
      jasmin96668 TGH_1

      Posted

      Hi!

      I know this is an old thread but I could have written your post it describes exactly what I have been going through the past year!

      I didn't think it was possible to have labrynthitis for that long, I have been diagnosed with Ménière's, bilaterally and I'm only 26 my whole world has been turned upside down.

      I wonder if it could be a mistake. Could you tell me how you are doing now? I have fluid in my ears as well as fullness which is why I was convinced the ENT was right about the diagnosis, but after reading this post I wonder if there is a glimmer of hope ? Did you experience fluid in your ears?

      Thanks in advance smile

    • louise35682
      louise35682 TGH_1

      Posted

      Did ur symtoms get worse in the evening i wake up feeling and hearing bad but as the day goes on i feel a bit better but after lunch time it starts to go down hill my hearing, vision and balance gets bad. I have suffered wilth fulid in my inner ear for about 1-2yrs now with no relief but its getting worse as its affecting both my hearing and vision in the evening is this what u are suffering from
    • mark63561
      mark63561 louise35682

      Posted

      Yes I do find the symptoms get easier through the evening, it's when I wake up it's at it's worst.The thing is I have been fine for over a week I even went ice skating over Xmas then all of a sudden it's back again.Its my right ear that's muffled and sometimes I hear whirring and whistling sounds that keep me awake.

    • natalie34459
      natalie34459 jasmin96668

      Posted

      I'm also 26 and have been experiencing similar things. I went to a dizziness and hearing clinic and they told me after hours of testing that I had labyrinthitis. Which ended up being wrong. I did months of overpriced Physical Therapy that did not help. I saw like 5 differeny ENTs. I have fullness in my ears too. They literally still don't know what's wrong with me. I can't work or drive really. This has been going on for 2 years. Any updates on your condition?

    • mark63561
      mark63561 natalie34459

      Posted

      My symptoms have gone now, it's been a few months since I've experienced any.My doctor told me I had labyrinthitis in about 60 seconds of seeing me, I looked awful and finding it hard to balance plus throwing up in the doctors office sort of nailed it.Take one day at a time and get plenty of bed rest.I hope you start feeling better soon.

    • carlene_2020
      carlene_2020 TGH_1

      Posted

      I've been to my neurosurgeon and he swears it's coming from my inner ear. I have a nerve blocker injection done in my neck in November of 2016 two weeks later I woke up with this and I know it's coming from my neck. I'm now dealing with a fusion that didn't take another herniated disk and severe nerve damage,massive headaches in the back of my head and he looks at me like I'm crazy! Am I really what to do next HELP PLEASE!!!!

    • anetta94863
      anetta94863 carlene_2020

      Posted

      The steroids may have caused it, the lidocine anaesthesia may have caused it. A lot of things. I got it 2 weeks after a dental procedure involving lidocaine injection. Herpes virus can be awaken by lidocaine, herpes hides in the ganglion behind the ear. Id say do not be afraid of moving your head, vertigo goes away eventually after you move. Massage trigger points on head, blow hirdryer air in your ears after  hot shower. Many people get rid of vertigo by going through air blowing therapy in the ear. Stroids cause nxiety, this might be a for m of severe anxiety. It will go away, it takes time tho.

       

    • jacqueline08843
      jacqueline08843 TGH_1

      Posted

      Hi, I know this ia an old post but just wanted to ask, how you are now? My sypmtoms are exactly the same as yours, I'm almost 6 months after first having VN. I havent felt right or myself since i collapsed with vertigo 6 months ago, constantly exhausted and weird sensations in my head, pressure, feeling not really here. thanks

    • greta59134
      greta59134 jacqueline08843

      Posted

      hi I'm on my third month , I've been off work two and a half months now , I just have constant sickness like morning sickness , when I walk about outside it gets worse , I only get a bit of a head spin if I try to walk at a normal pace , or going up and down stairs , I'm going back to work on fourth July , I'm sick of being off and need my full wage back , I have no idea how I will be on my feet for five hours , I haven't done more than two hours out and I have to sit down because of the sickness , so ill just have to see how I get on at work and sit down till it passes if it vets bad or go home early , hope you feel better soon , I know my sister who is a nurse said the sickness could be with me for life , and my symptoms can come back at any time , .

    • carlene_2020
      carlene_2020 anetta94863

      Posted

      Thanks so much for the info I have good days and bad days I just wish this would go away been back to the Neuro he says it didn't come the injections I'm getting a second opinion, I have another herniated disk in my neck wants me to go back to pain management is this rea ply GONNA help

    • greta59134
      greta59134 carlene_2020

      Posted

      This hot weather isn't helping, I'm being sick each night , it makes it twice as bad , I'm getting used to feeling permanently sick 😷 I'm so bored of it , the specialist said my brain has compensated for the way I am now , don't know if that's good or bad lol I'm getting real sick of being sick 😥

    • carlene_2020
      carlene_2020 greta59134

      Posted

      I know exactly how you feel. I'm to the point if I have to feel like this daily I might as well drink then it will make sense!

    • Jdclaire
      Jdclaire TGH_1

      Posted

      Wow spot on i dont normally sign up or give my details but i have this once.

      Firstly thankyou sat here going out of my mind. The symptoms the same.

      Also severe insomnia daily chronic migraines my spine collapsed and developed a brain cyst chiari malformation I could go on about so much. My heart skips with it as well my brain feels like its falling for a split second. The visual side i see bright white in the centre of my eyes. When i look left i feel my brain drops when i look down i see a 2 inch line to my chest. My worry its the brain cyst though. Either way thanks for giving me peace of mind till im at doctors in the morning.

    • roxanne_99602
      roxanne_99602 maggie34

      Posted

      Hi Maggie,

      I know this post is a year old but I have been having the exact same symptoms and issues for the past 9 months. I have done physical therapy with a vestibular specialist and have had an MRI. What medication did they put you on? Do you have any tips of what made you better? Were you diagnosed with labyrinthitis?

      Thank you,

      Roxanne

    • maggie34
      maggie34 roxanne_99602

      Posted

      Hello Roxanne, I am sorry to hear this ; I know only too well the symptoms. I had labyrinthitis , which initially was thought to be viral but inderneath impacted earwax turned out to be bacterial, which is more uncommon. For months I had 2tablets 3 times a day of something beginning wit 'p' which was also prescribed for seasickness (sorry i can't remember properly) It lasted for months and months, probably a year with severe symptoms. The balance nurse helped with exercises and I still do them 2 or 3 times a week whether I need them or not. I had an MRI scan too and it has affected my hearing not badly but i do have hearing aids now, which I need for the tv etc to give my family less cause to take the mickey (not that they do really) I was told that the labyrinth on one side does not work at all, which is why I still do the exercises; occasionally I lose my balance but don't get that awful full feeling in the head. With the bacterial problem, I had bacterial eardxrops 3 times a day for 3 weeks. When i first had labyrinthitis I actually went on to a squash court on my own and practised hitting the ball and picking it up to really retrain my brain and that is what the exercises from the balance nurse do. She asked me to turn round with my eyes shut 5 times each way; it took me an hour to recover ha ha. I do it twice now. Please ask me more questions if I can help

      Good luck

      Maggie

    • julie33755
      julie33755 jacqueline08843

      Posted

      Wow - I wish I could respond to everyone and say, Thank God I'm not the only one!! About a month ago, I was reading, when all of a sudden I felt like a zap in my brain. Instantly became dizzy and was anticipating a migraine. It never came. But I got nailed with vertigo, nausea, extreme fatigue. Couldn't get out of bed for a week (which is SO unlike me.) All docs said BPPV but none of the manuevers have worked. Trying acupuncture. Anything! It's like a lot of you have said and how I've tried to describe to others: it's like I'm drunk all the time. So what has been everyone's official diagnosis??

    • lisa43938
      lisa43938 natalie34459

      Posted

      Hi - have you gotten any different diagnosis? I have similar symptoms for years. Lisa
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