Labyrinthitis - "brain shifts"??

Ears, nose and throat
1

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 . MTIA!

2

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........

3

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

4

Hello Donna & all affected by lab

I am currently in my 13th week of labyrinthitis and the most severe symptoms of vertigo have gone. I spent 4 weeks not being able to move in bed as turning my head made the room spin and during the day, I had to lie down frequently. I had a couple of weeks when I thought it was getting better then I had some bad days, which you will all recognise. I was told by the Dr, however, that it would disappear as suddenly as it arrived so last week (the 12th), I had 3 good days and was too optimistic. I woke up without that awful full feeling in my head, I reduced my medication and did compensation exercises but the next day it was back to symptoms! So I am back to full medication, I realise I won't be able to do without that for some while yet. My short term memory is definitely affected; I can't always think of my words or get them out. Some situations are fine but others if I have to do too much too quickly make me feel dizzy.

I also think I am more irritable than I would be normally. It is difficult to tell people as it isn't an illness that you can see and if they haven't experienced vertigo, they have no idea what it can be like.

I look forward in hope that it will just disappear as it is impossible to live properly with this condition

Maggie

ps I will research VEDA website

5

Hello all,

I've been suffering with Vestibular Neurititis for almost 2 years. My first occurrence was Aug 21, 2011. I was so scared and I thought that I was having a stroke as well- I went to the Emergency in an ambulance. Since

that time, I've been on sick leave twice for a period of two months. The second time being in March 2012.

I've had numerous tests done Blood tests, CT scans, MRI. All were clear. I've also had balance tests done

at the hospital which took almost 3 hours to complete. In one test they put warm and cold water in my ears to test my balance. I also did Physiotherapy on two occasions for about a month which seemed to help.

In March of this year my ENT finally got the results back from my balance tests (it took 8 months to get the

results!!). He said that I have balance loss in my right ear. I'm back at work and I now only working 4 days a week with Wednesdays off so that I have a rest day in the middle of the week. I'm feeling better than I did in

the beginning, but it's never really 100% better. I can always feel my dizziness in the back ground, even on a good day- like turning my head too fast.

Yesterday was a really good day, I felt so good that we decided to go on an outing to a museum and then a

short walk thrrough the museum grounds where they have an outdoor garden and a park. Afterwards we

went shipping for an hour and I carried a few heavy bags to where my husband was waiting. While I was

shopping I started feeling very dizzy and lightheaded from scanning the store shelved too much.

Today I feel so awful and dizzy. I also felt nauseous, so much so that I couldn't finish my breakfast this

morning. This always happens whenever I get tired after doing something that over-exerts me.

Please feel free to ask me any questions that you may have.

Sincerely,

Helen

6

Well I'm in Houston for a holiday with my daughter who lives out there. I think maybe the more stories that are shared then the better understanding we can all have of the disease. Incidentally unless you've had it I don't see how you can appreciate how devasting the symptoms can be.

My first episode came completely out of the blue about 6 years ago. I was then in my late 50's. The day before it happened I had been on the roof trying to fix a television ariel. 

I woke up one saturday morning feeling very dizzy. Our bathrooms are downstairs and I managed to get down to use the loo. I couldn't get off the toilet and sat on the floor waiting for things to clear. They didn't so I called to my husband to help me. He knew something was up because I am very private about bathroom matters.

I had been a radiographer and my husband is a physician. I guess you go with what you know and what I knew was an Acoustic Neuroma! Not only was I familiar with them having worked in a neurological hospital but my brother-in-law had died subsequent to surgery for removal some 30 years ago.

My husband was quickly able to do some basic clinical tests to reassure me it was 'only' labrythnthitis or some other vestibular disturbance. I realise I was very lucky to have this quick reassurance at hand.

In the first acute stage I just wanted to stay in bed. I felt safe. I am a bit of a control freak and to go around looking like I had a hangover is not the impression I chose to give. However that is not the way to conquer this illness. You have to get up and acclimatise your body to your changed sensory perception state.

I play tennis and it's not easy when you try to smash. The first time I  actually fell backwards on the court.

The acute phase lasted about 4 weeks. Since that time I have had episodes completely out of the blue several times, never at the same intensity (or perhaps I am used to it!). I would say it always there at the 5% level minimum. If it gets worse I do the eply manoeuvre myself lying with my head hanging over the bed. It often helps (but not always!)

Oh by the way if you are wondering why I am on this website now. I've been here 3 weeks and have had labrythnthitis all that time, not so bad as my first episode but still not what you want when you are spending time with your grandchildren. I googles labrynthitis and stress because I wondered if they were linked (I'm not a stressy person but my daughter is and I wondered if her shouting at the kids was making me stressed). I was fine when I landed, so it doesn't appear to be the flight but had it when I woke up in the morning. 

Louise had put the bedside table on the right hand side and I had left my phone there. I always lay on my left side and when I perform the Eply manoeuvre I do it for the right side being affected. I do believe that's how this episode has been triggered.

Sorry if I am wittering on but I do think these anecdotes might help and if even one person is helped then it's worth it.

Good Luck everyone.

Jackie

7

Hello Helen

I have had labyrinthitis (with a bacterial infection under impacted earwax). Like you I was severely ill for 3 or 4 months. (quite awful). I have had an MRI scan and a camera in my nose but no problems there. I now have a mild hearing loss and the inner labyrinth on one side no longer works. 15 months later I don't feel ill but can have vertigo cetainly looking for things on shelves(!)and also turning round quickly. The balance nurse gave me about 10 exercises to do regularly as I must challenge myself so that the brain can adapt. On my recent visit only 2 of the exercises still cause the muzzy feelings so i am delighted but will keep going with the exercises

Maggie34

 

8

Hey guys, brain shifts describe it exactly!

I'm a previously healthy and fit (run 4-5 times per week) 34 year old male, I don't drink alcohol or smoke.

My story is slightly different from you guys. My vestibular problem was triggered after taking mdma (ecstasy) of which I'm a very slight user (2-3 times in 5 years). After suffering from what I had considered a debilitating hangover of feeling so dizzy every time I stood up i fell down and having waves of complete nausea (though never actually sick) for about 2 weeks afterwards I finally saw a doctor who instantly diagnosed Labrithisis.

It’s been about nine weeks now and the illness persists in many differing states of severity. The dizziness for me has subsided and hasn’t really been the real problem, but both the nausea and brain fog has become almost impossible to function with.

The nausea comes in waves and is usually worse at work when I’m concentrating on a computer or standing serving a customer. There is no immediate remedy for this nausea but I’ve found that eating something or going for a quick 5 minute walk in the fresh air will help (or maybe it’s just the action it’s self takes my mind of it somewhat). This is so physically draining, my energy levels just hit the floor when this is happening (I also completely get the irritability comment made).

The brain fog, this is a nightmare. As I’m writing this forum and the words that would usually just flow my mind instantly while writing are to lost in my brain somewhere and I’m having to stop writing in order to compose myself and think of the next appropriate word (sometimes this’ll take 1-2 minutes). At work, I’m running errands to which 30mins later I can’t remember if I’ve actually done it (though I remember thinking about doing it but not actually having done it). Things in my memory just aren’t coming naturally to me at the moment, it’s like my auto-pilot in my sub conscience needs recalibrating. Perfect example is this; I’ve driven my same car for the last 5 years. I got in it the other day and had to physically look down at the gear stick to find reverse, my automatic subconscious had forgotten where to find it so I had to consciously look down at it.

I have to say, I have had two bouts of 4 days at a time where I’ve felt near enough normal but after which I can feel the illness coming back. It is like a horrible fog descends on my head and the misery-go-round starts all over again.

It’s a real nightmare this thing, especially when the paranoia says that I’ll never be normal again. All my enthusiasm for life is getting drained by it, a cruel illness I think everybody will agree.  

Anyway, this is a relief that I’m not the only one inflicted, it sounds a lot like it’ll be just a case of sit tight and hopefully this rollercoaster will let me off sooner rather than later.  

Hope everybody gets well soon

   

9

Another outlook...

I was diagnosed with Labyrinthitis about 8-9 weeks ago. It was suspected that I had a prior sinus infection but aside from some minor sinus symptoms my main concern was dizziness - namely a swaying/falling sensation - as if I were on a boat. This submissive dizziness has pretty much stayed with me throughout the 9 weeks, but with many other symptoms coming and going and perhaps 1-2 days of complete relief at points, before the dizziness has returned.

Symptoms that I’ve experience are dizziness, both on standing up and sitting down (although only really occurs when standing still now), extreme tiredness/weakness, fatigue, lightheadedness, brain fog, heavy/muzzy/swirly head, headache, not to mention a shed load of anxiety!  Thankfully, I didn’t seem to experience the spinning vertigo and nausea/vomiting that a lot of others have reported. Neither have I had any hearing loss, Tinnitus, or the fullness that people refer to.

I've found that my symptoms frequently swap and change, but the dizziness has been constant, varying in intensity. 

I've not taken any medication throughout this timeframe on the advice it would take longer for me to recover.  However, I have just purchased ‘4head’ for the headaches!

Just recently, I paid for an ENT consultation and was given VRT exercises to do to retrain my brain and fix the mismatched signals it is receiving from my ear, which I am assured should eventually erase the dizziness. Can't say I am noticing much of an improvement yet however, I did only start them on Monday!  This may be responsible for the new onset of nausea/queasiness I have had for the past 3-4 days as I pretty much avoided this for 9 weeks.

I am really at my wits end with this now.  I am grateful I haven’t suffered as badly as some people may have but I really am desperate to feel better now. This illness has shot my anxiety through the roof (which is another battle in itself) and its very hard to not withdraw from everyday activities, including work!

I am wondering if anybody else has experienced such variety and intensity of their symptoms like me? Whether anybody from this forum has yet recovered?

Looking forward to hearing from you.

10

Hi all, I am the OP although under a slightly different user name as I forgot my login details!! Thought it might be useful to give you all an update.

Two years down the line for me. My experience is similar to Jackies, not suffering too much from spinning, more of a falling sensation. Still I get symptoms, mainly around this time of year I have come to realise, and now wonder whether it's triggered by pollen allergy for me. I don't really get hay fever but my ears have been twingeing, feeling full and I'm having some mild dizziness. Sometimes even watching a screen scroll can trigger it!!

Us ladies can apparently also have hormone linked episodes, something to do with the balance of hormones in the ear fluid changing. I also get worse when tired and stressed but guess that's down to the brain not wanting to play the compensation game as efficiently as usual.

My "brain shifts" happen mostly when I'm tired. It's very similar to that feeling you get when you're just dropping off to sleep but suddenly come to again. I also definitely get periods of positional vertigo (BPPV) when I need to do the Epley. That's not supposed to be the case with labyrinthitis, but I believe lab causes the onset of BPPV. Sometimes wonder if I have a mild case of Menieres. I have tinnitus and migraines, but have been tested and have no hearing loss...try telling that to my OH who is fed up of repeating himself!! 

My understanding is that lab stays with you for life, it's permanent damage to the nerve for which the brain usually learns to compensate eventually. I firmly believe that it's at times when your brain is in overload with stress, other illness, tiredness etc that symptoms start reappearing. A bit of a vicious circle really :0( 

11

Hi there,

I am sorry you haven't found permanant relief from your initial symptoms. Thanks for taking the time to update us though. You don't know how many times I've read this particular forum over the past 9 weeks! 

I had wondered about a seasonal illness as this time last year (thanks to Twitter reminding me of an old status) I was unwell with a nasty cold & flu. I also remember complaining then that it had been a lot worse than previous years. I've also never knowingly suffered with hayfever. 

I can relate wholely to your point regarding the falling sensation and the "brain shifts". You are absolutely spot on... it does feel similar to dozing off or that falling dream you can sometimes experience before jolting back to reality, but with less intensity.  

It's interesting that I've found I am very episodic with my symptoms lately. Its like they come & go in waves. I've had a lot of pain over and behind my eyes, like a tension-type headache. I had thought it could be caused by eye strain so, I bought '4head' this morning and I am shocked how much it has already lifted that heavy-headed/muzzy feeling. I feel more awake!  It's also reduced that falling/swaying sensation to more of an "every now and then" degree. 

I am not sure if you ever consulted an ENT, but I paid for a private appointment at London's Harley Street Clinic 2 weeks ago. I fired him with lots of questions as my worry was that this may never go away, or I'd inherit other disorders. He advised me that there was no increased risk of people who experience Labyrinthitis to contract other disorders such as Meniere's and BPPV. You'd just be very unlucky if you did! 

He did conclude that recovery from the intial attack can take between 3-12 months. About a third of patients suffered a repeat attack within 2 years and another third within 5 years (both typically through illness or stress as you mentioned) and this could be corrected by performing VRT as/when. That said, only "about 5%" of all he's patients experienced chronic or life long problems with their overall balance and the body can function perfectly well with only 1 balance organ of either ear.

I am obviously not medically trained, nor have I suffered for as long as you, but I'm not sure if that provides any reassurance.

As I've had a lot of anxiety with the condition, I am now contemplating taking a low dose of SSRI's (anti-depressants) as there is some evidence that this aids a quicker recovery. 

I do hope you find some solace in the near future in any case and thanks again for taking the time to respond.  

Ashley

As mentioned in my previous post, I recently had an appointment at the Harley Street Clinic with an ENT (Jonathan Harcourt) who is renound in his field.

12

this is a relief.to read I have been suffering for about 3 years with clogged ears and pain in the bridge of my nose.

I too am back and forth from the docs all saying I have eustachian disorde....

I seem to feel spaced out all the time and very panicky,I can at times feel like im goin to faint :-(

I have been referred to ENT and they seem to think its eustachian and chronic rhinositus.

was put on 6 week anti biotic and steroid drops,seemed to ease a little now im off all that im suffering big style....

im convinced theres summit more wrong and tell myself its a tumour :-(............

the last couple nights I have had a funny feeling thro my head it doesn't hurt it just seems to b a fuzz from 1 side ti the next but its enough to scare me.......

y cant I just believe its what the docs say im giin iut of mind and just want to feel "normal" 

13

I am interested in your condition--I too have often experienced weird sensations in my head---as you describe,it feels as if the brain is shifting around---and it is usually associated with feeling of pressure in my ears. Often I feel a bit dizzy when I lie down at night.

My GP has no suggestions as to what it might be,other than saying it may be due to stress.I don't drink or smoke,have normal blood pressure ( a bit on the low side ),a little overweight,very active.I think that lots of vigorous exercise helps to keep it at bay.Insomnia seems to aggravate it or cause it.

 

14

Hello all I first had labyrinthitis almost 2 years ago and I was very ill for 3 or 4 months (it turned out to be a bacterial infection compounded by impacted ear wax) I have seen a consultant, had an MRI scan, camera in my nose and help from the baLance nurse.  I did the exercises she suggested very regularly. I have played squash on my own, turning, picking up the ball etc...all good! I still practise 2 of her balance exercisesregularly as I can still get the vertigo effects randomly e.g.at the top of stairs but time is helping. Initially, she wanted me to turn round 5 times with my eyes shut, each way. First time I tried that, it took an hour to recover! It is almost a year since that first try and I can now turn round 3 times with my eyes shut and it takes a minute or two to recover...breakthrough. I agree with her that you have to challenge the brain inorder for it to adapt. I hope this helps. It isn't until you experience labyrinthitis that you realise how debilitating it is. I think it will always be with me but it isn't stopping me doing much now.

Good luck

15

Hi everyone, 

I joined this website now to be able to respond to this thread. I have haed chronic vertigo and a host of sx for over 4 months now. The reason I am writing is that it is possible that some of you might have "Vestibular Migraines", aka :Migraine Associated Vertigo. Sx are very similar to Labs and Vest. neuritis. Please look it up online - it might help you.

In England, there is a specialist that put a lot of online info, Dr. Nicholas Silver. I am in the U.S. but I thought most of you in the UK could look him up as well.

Best wishes to all.

16

Hi Helen

I have been feeling pressure in my head very nauseous and hot for over a week. My ears also feel a little clogged and I feel like I need to vomit. When I read the words look like they are popping out at me and moving. I am very scared and don't know what to do. I have 5 kids and am currently working but I don't want to work anymore because I feel so sick. I went to the hospital and they said it was a migraine but I don't think it is. Do you think I have the same thing as you? I am going to the doctors tomorrow but I am really nervous and scared. Thanks

17

Hi Helen

I have been feeling pressure in my head very nauseous and hot for over a week. My ears also feel a little clogged and I feel like I need to vomit. When I read the words look like they are popping out at me and moving. I am very scared and don't know what to do. I have 5 kids and am currently working but I don't want to work anymore because I feel so sick. I went to the hospital and they said it was a migraine but I don't think it is. Do you think I have the same thing as you? I am going to the doctors tomorrow but I am really nervous and scared. Thanks

18

Hi I have been dizzy for 6 years I lost my balance and has taken me 6 yrs to walk and drive again.

Had 6 years of physio and seeing the best consultant in the world there is literally nothing i don't know about a vestibulopathy and bbpv so if anyone would like to know anything plse ask

19

Hi glad that you've overcome a lot of your difficulties. Did you see a consultant in the UK? If so, could you please provide a name and location/hospital? Was it the physio that helped you overcome BPPV? Thanks

20

I couldn't walk without help the nerves were stripped to new born baby status so I had to learn all over again and it is hard. There are soooooo many factors that bring u good days and bad days but with the right help your good days will will over take the bad days.

I am dizzy by night I rarely go out at night no where busy, I don't drink, always have 2/3 pillows, don't have a bath because of the movement of the water, swimming is hard afterwards not during, hills r hard, one vrt excercise was to walk up and down a hill with eyes shut - was pretty interesting.

Any effects to the body will have such a bearance so tiredness is a huge huge player, stress, a night out in a busy place, medication, for instantce starting my anti depressants oh my god feel like have de compensated so much, anti biotics another bad one so much its un true.

I could write and write and write about moving floors, slanted floors, walls that look like they are breathing, marsh mallow feet, etc and am happy to do so.

I have made great friends with fellow dizzys and it helps so much

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