On and off sickness with labyrinthitis

I've posted mine for you in the prev post but instead of using @ and . I've spelt it out lol so it can go on email me anytime. Luckily the holiday is a resting one so I won't be partying or anything thing like that just be nice to get some sun and chill out. Not heard of anyone saying flying is a bad idea.defo keep me posted with the tests on Friday fingers crossed :-) I can say I have been shaky but I have been jumpy as in the slightest noise makes me on edge and feel scared some times I even had at one point a feeling of fainting when I was trying to sleep and this would scare me In to thinking I wouldn't wake up so I couldn't actually sleep luckily now that's stopped but I have to take calms on a night to help me get to sleep they work a little. X

My parter has been suffering with this illness for about 3 months, the same feeling of sickness and dizziness, good days and bad days, constand dizziness just like others reported on this forum.

We finally received the official diagnosis fom the ENT specialist yesterday that the problem is what we suspected, Vestibular Neuritis. For those that are new to this ilness, it is basically the same symptoms as Labarynthitis without the loss of hearing.

I have done weeks of research into this illness and after weeks and weeks of doctors and hospitals visits I insisted she was referred to the ENT. Yesterday a specialist at the ENT was able to confirm the illness and reasured us that the best form of treatment is the Vestibular Rehabilitiation Therapy (VRT).

VRT is basically a set of excersizes to be completed every day that exposes the body and mind to being dizzy for a short sustained period of time. In exposing yourself to these excersizes, the body starts to compensate for the weakness, by using your internal nervous system, muscle and joints to help overcome the weakness brought about by Vestibular Neuritis (inflamation of the vestibular nerves in the inner ear). The best way I can compare it is to that of sailor, in that the sailor needs to get his see legs and expose him self to the rough sea's to overcome the sea sickness, it's harsh but from what I can see I think its the only way out from this illness.

It's early days on the path to recovery, we're 2 days into the excersises, the first day my parter felt sick again after the excersizes, this is normal and it is overbearing as with all rehabilitiation it pushes the body and mind to the limit.

The second day she managed to complete all the excersises, I was so happy for her; yes she felt dizzy and sick but this is essential to start the individuals (my partners) recovery.

Try not to take tablets like "Stematil" and "Betahistine", those prescribed for vertigo or dizziness, if you can help it. Unfortunatly these remove the ability for the body to compensate and learn how to activiely cope or compensate with the dizziness. We were told it's fine to take anti sickness tablets if needed, this at least helps to stop the nausia or feeling of sickness, fortunatly my partner was given "Metoclopramide", she say's they work well and this really helps her get through her sick days.

It is advised that you do keep active, walk if you can outdoors in open space, try to do some "low intensity" excersize to keep on the move. It seems the more you expose yourself to the feeling of dizziness (in safe surroundings or conditions), the quicker your body learns how to adjust and cope.

I know this is all secondary information, but I feel so much for anyone going through this illness, especially having seen my partner suffer for months. Finally there is some sense to all this, we will be going back to ENT for checkups on home VRT progress in a month and for an MRI scan just to be absolutly sure as there were signs of slight hearing damage in the one ear.

I'vew tried to give my best shot at summarising the last 3 months or so, this is basically my bit to help others that are exposed to this dreadfull ilness. I will try to answer any questions but please note this is not me suffering, its my partner, its essential that you can have someone to support you trough this illness, we are lucky as we have each other and we will get through this togeather!

Good bless.

Hi all,

I am one year on as well and totally empathise with all you. I have improved a lot since the start of the year, but still get the residual effects. Everyone is different, but here are a few points that may help.

I found going to the ear and throat specialist at a hospital helpful. They may not be able to cure it, but speaking to a professional might give you a bit of peace of mind.

I really don't think medicines or accupuncture will help. I also read once that colloidal zinc is good for it, but I think it is something you have to naturally get over.

Mine normally gets worse when I have a cold or feel run down. So I try and take a lot of vitamin supplements and immune system stuff like Beroca. I also try and make sure I get good nights sleep as I often get over tired

Do you use a computer at work? This makes me feel nauseous on occasions. So I try and take breaks.

The doctor advised on doing Cawthorne-Cooksey exercises but I got quickly bored of doing these, but over the summer I did a lot of walking and cycling which probably helped...

Wearing ear plugs is useful as well, as I have been very sensitive to loud sudden noises.

Finally I think it becomes a psychological thing after a while, and I now think about it less. I have found you need to be determined to get on with your life regardless.

Remember, you are not alone. It is more common than you think and since getting it, I have found that many friends of friends have had it.

all the best...

Hi everyone m

I'm not sure if I actually have labrynthitis but all my symptoms are the same, caught a bad cold in September and had a terrifying experience thought I was dying, dizzy heart racing spinning sickness all while I was driving a bus , had to stop call for help went to A&E said I had very high pulse and needed to see my doctor could be a virus, next day visited docs he said there was fluid in my ears and it COULD be labrynthitis, put me on serk 8 which helped a bit and antibiotics which helped a lot started to feel a bit better, that was 8 weeks ago and still have days that I feel so sick and dizzy that I can't go to work . Will this ever end..... Got to go back for balance test next Wednesday. The last 4 days have been horrible again feeling so so sick and ill not so much dizzy though, wish I knew what this was ? It's a worry....

It is so good to see these forums that discuss this horrendous illness.

I have been suffering since March 2012 although there were a few signs prior to the Big Bang as I call it.

I was an extremely active outgoing social person with a very stressful high demanding job and whilst at work it hit me like a ton of bricks and went straight to the GP. I was dizzy, faint, went extremely pale, nausea and tremors. I had no idea what was happening to me. My GP diagnosed me with labyrinthitis and was told it would take a few days to get over and gave me stemetil for the nausea and serc for the inner ear. I was completely bed ridden for 3-4 months where I needed help to just get to the bathroom as I was so off balance. I had an MRI which was all clear and saw two separate ENT's who diagnosed me with vestibular neuritis and told me that I will get better. I had balance, hearing and caloric tests which showed 53% permanent nerve damage to my left inner ear. Then I went to a neuro physio which diagnosed me with BPPV in my right ear. Double whammy right. I had acupuncture and chinese herbal medicines for 6 months which helped with the anxiety of the problem.

I also notice that if I have sinus or a cold it comes back very intensely. So it is extremely important to eat well. Since my appetite is so low I make sure that when I do eat there are plenty of nutrients. Lots of fresh lemon juice with water and plenty of fresh fruits and vegetables.

I have been unable to work now for nearly a year. I am definitely not as bad as I was in the beginning as I can have a good couple of weeks where I can get around, drive, grocery shopping etc. Then it comes back and I am house bound again. Nausea, loss of balance, loss of appetite etc. Each day I try to go for a walk but some days and I just cant even walk out the front door without the aid of someone else. I do use ear plugs in noisy areas and I sometimes take a valium to stop the anxiety that comes once the dizzy feelings kick in. I must say I only use valium in extreme cases and am aware not to rely on these. Approx. 1 or 2 tablets a month. Ginger also is great for the nausea. When I am unable to eat I drink a ginger beer or ginger tea. I am really hoping I get to the end of this. It is so cruel as when you start to feel better you almost forget how terrible it has all been then you wake up and it all comes flooding back. My GP has now referred me to a neurologist so I am now waiting to see him.

Hi everyone. I am into week 4 of this. 5 visits to my GP, urgent care and emergency. Now waiting for an ENT appointment. Urgent gets me into one in May. Have missed work for as long. Serc helps to some degree, but the dizziness is still there. Right now the ear pain is bad. I have been gold it was meniere's, then labyinthitis and then BPPV. I am still convinced it is somehow related to my chronic sinus problems.

So glad this forum is available to read how others feel.

Hello everyone...just wanted to share my story with you this is the first time Ive posted on a forum but I'm desperate...in 2011 I had my son prematurely he was born at 27 weeks but thank god he's happy and healthy...soon after I developed allergies to food....something I had never had previously...July 2013...I'm in my kitchen my son is playing around with my sister in law who was visiting from the uk (i relocated to switzerland) when I experienced a severe vertigo attack I felt like the room was whirling and I felt very faint anyway I put it down to looking after a 2yr old....the next day I had another severe attack so decided it would be best to go to a and e....the doctors did an MRI/cat scan blood work and and said I could possibly have md.....I was panicking having never heard of this disease and felt v stressed out so decided to fly into the uk and be seen private...and I have now been diagnosed with labrintiits..which I strongly believe is linked to these allergies I've been experiencing however this theory was completely dismissed by the ent consultant I saw..I'm just wondering will this ever get any better? Or experience allergies with this thing? I'm getting really depressed its been nearly three months and although i haven't had an extreme episode I'm still off balance at home I'm fine it's when I'm out I feel dizzy anxious and stoned ..I was an active 31yr old and now I feel like everything's stopped...just feel so depressed and I keep looking my darling son hoping and praying I get better...how long will this last?? Can someone help me. Thank you

Do you know what after a particularly low day where I've been sat crying about how I feel like my life has

been stolen from me I am so glad to have found this page!

My first dizzy spell was the beginning of August, I went dizzy, nauseated, was tired, weak arms and legs and just felt body heavy. I saw the doctor and he did blood tests, they all came back clear. I saw him the week after again and told him I had a high pitched noise in my ear and after checking them he diagnosed labyrinthitis.

It's nice to finally have a name for it but oh my lord what a horrible illness. I was an independent, happy and social 29 year old and now I struggle to leave the house. The dizzyness still effects me, I don't really get sickness now but have a loss of appetite so find I am struggling to eat much at all, I know I have to otherwise ill feel worse but it is hard going

My 3 year old daughter went to see her nursery for the first time yesterday, I sat fine filling in forms and then had to read a note section and my head went blurry and then as I stood to go and look around with her it completely went and I ended up having to lean on a nearby shelf or holding onto doorways.

I have suffered anxiety attacks since I was 15 and find I have had these since diagnosis too. I have ear pain today as well.

I'm also finding that computers, supermarkets, crowds and loud noise are effecting me.

I also haven't worked for the last month and my recent sick note is up on Friday so I will be back to see the doctor then.

I haven't been able to walk my son fully to school since he started and find when I meet him half way I am anxious and my head starts to go dizzy. My daughter starts nursery tomorrow and to collect her I will have to walk through the yard at home time, full of people and at the minute I've no idea how I will cope with it. It should be an amazing milestone for her but I am petrified.

I know of a few people who have had this condition. My boss had it and said within 2-3 weeks he was fine, he woke up and it was gone. My nan also had it for a few weeks and it disappeared and they have been fine since. Like I said I'm on my 5th week now and I pray it goes soon.

I feel like my life has been robbed from me and I really can't wait to get it back.

I'm fortunate to have two beautiful children and a supportive fiancée and family but its so demoralising and

Confining because although you can describe your symptoms, experiencing them is a whole othe ball game.

Does anyone else find their symptoms are worse when they are stressed? I am going to try taking kalms tablets tonight to see if they help me relax any

If anyone would like to talk, I'd love to find sufferers to share the horrible experience with :-).

Do you know what after a particularly low day where I've been sat crying about how I feel like my life has

been stolen from me I am so glad to have found this page!

My first dizzy spell was the beginning of August, I went dizzy, nauseated, was tired, weak arms and legs and just felt body heavy. I saw the doctor and he did blood tests, they all came back clear. I saw him the week after again and told him I had a high pitched noise in my ear and after checking them he diagnosed labyrinthitis.

It's nice to finally have a name for it but oh my lord what a horrible illness. I was an independent, happy and social 29 year old and now I struggle to leave the house. The dizzyness still effects me, I don't really get sickness now but have a loss of appetite so find I am struggling to eat much at all, I know I have to otherwise ill feel worse but it is hard going

My 3 year old daughter went to see her nursery for the first time yesterday, I sat fine filling in forms and then had to read a note section and my head went blurry and then as I stood to go and look around with her it completely went and I ended up having to lean on a nearby shelf or holding onto doorways.

I have suffered anxiety attacks since I was 15 and find I have had these since diagnosis too. I have ear pain today as well.

I'm also finding that computers, supermarkets, crowds and loud noise are effecting me.

I also haven't worked for the last month and my recent sick note is up on Friday so I will be back to see the doctor then.

I haven't been able to walk my son fully to school since he started and find when I meet him half way I am anxious and my head starts to go dizzy. My daughter starts nursery tomorrow and to collect her I will have to walk through the yard at home time, full of people and at the minute I've no idea how I will cope with it. It should be an amazing milestone for her but I am petrified.

I know of a few people who have had this condition. My boss had it and said within 2-3 weeks he was fine, he woke up and it was gone. My nan also had it for a few weeks and it disappeared and they have been fine since. Like I said I'm on my 5th week now and I pray it goes soon.

I feel like my life has been robbed from me and I really can't wait to get it back.

I'm fortunate to have two beautiful children and a supportive fiancée and family but its so demoralising and

Confining because although you can describe your symptoms, experiencing them is a whole othe ball game.

Does anyone else find their symptoms are worse when they are stressed? I am going to try taking kalms tablets tonight to see if they help me relax any

If anyone would like to talk, I'd love to find sufferers to share the horrible experience with :-).

Hello all,

Im so pleased i found this forum, im so scared. I have been suffering from this terrible condition for months now, and still im not well - i feel like i have lost the old me. Like many of you have said, you just want to be up and be normal again.

It all started back in May of this year, spinning attack, floor moving beneath my feet. I went to the Drs and they gave me stemitil which worked intially a little but not to a great degree. This went on for 3 weeks and i still wasnt getting any better. I then went back and got given Betahistine 8mg which worked and i was back on my feet like normal. I continued taking the betahisitine as i was afraid that if i came off it, i would get worse.

Unfortunately, in Septemeber everything came back - only worse. I have been suffering now since then, and although im still ont he betahsitine, it is only helping with the vertigo and not the dizzyness itself. I get days where im not to bad and can cope and others im unable to get out of bed. I find i can only sleep on my right side as to sleep on my left i get tinnitus bad and dizzyness gets worse. I have a horrible off balance feeling all the time, sometimes i sway from side to side when sitting. I work in an office full time and im trying to so a masters degree and finiding it ery hard to cope as my vision gets affected and i cant look at the screen too long.

Ive been to see a specialist who still wont confim that i have Labrythintius, however after seeing all these forums and knowing the symptoms im sure this is what i have. Im scared becasue i feel its never going to go away. Im trying to seek help for some VRT excersies and not getting anywhere. I am also scared because i cant get off the Betahstine and ive heard these hinder the compensation process.

My anxiety is getting bad with it, i get scared to go out or go anywhere, im also afraid im going to loose my job as i still have to have days off now and again.

Its so awful and i have no idea how long im going to have it, or whats going to happen.

Any comments or advise would be greatly recieved Hope you are all feeling better. x

Hi angharad, In Canada our specialists are ENT's Ear Nose & Throat. And our waiting times are long. After finally seeing one on June, after being sick for 6 weeks in March April, I was diagnosed as having vestibular neuritis. It is damage to my vestibular nerve (balance), probably caused by the Labrynthitis. He said it was related to Bells Palsy, but not Bells. I am much better, but still have my days.

I will say that after several trips to emergency clinics during the 6 weeks of he'll, two md's did agree that motion sickness pills help as well as the antihistamines during extreme vertigo. The ENT advised that I will just have to live with it and retrain my brain.

Just to note also. I was given those exercises by one md and it was a waste. I did not have ear crystals.

Did you doctor mention anything about meniere's? Just a thought. If you want to email me to talk....

Emis Moderator comment: I have removed the email address as we do not publish these. If users want to contact each other directly please use the message service.

Hello everyone on here. I am so relieved to find others who understand this illness. By reading your stories I don't feel so alone and am happy to share my story too.

I know this is a UK based forum but I am in Australia. There doesn't seem to be much knowledge about this illness here and no one I know has ever heard of it !!

I am a fit and healthy 48 yo woman who with no prior warning, while out browsing in the shops one day while my teenage son was at the Video Game shop, when all of a sudden I felt as though I was going to faint and the blasting noise in my ears and swirls in my eyes took me completely by surprise. I staggered back to the car and somehow drove home, got into bed and didn't surface for a few days. Convinced it was just a virus that would cure itself in a few days, just thought it was something like a cold, so didn't stress much about it. Other than the noise in my head, it felt like I was walking on a boat the whole time. Eventually went to the doctor about 3 weeks later who diagnosed labyrinthitis without even getting out of her chair. Gave me procloperazine that made me feel worse so stopped it for a few days but then when I kept getting worse, continued until the course was finished.

A few weeks later with little improvement, went back to the Clinic and saw a different doctor who told me I had Meniere's disease, gave me a script for Serc and told me to come back in 6 months. I knew that wasn't right because my mother-in-law has that illness and the symptoms have a number of differences.

Went to a different doctor had a full range of blood tests, CT Brain and Cardiac Echo - all results were fine. The pain in my neck and shoulder was worsening so started seeing an osteopath and a naturopath - one to make sure of no nerve blockages and one to work on the immune system, with great results. Returned to about 90% of normal me .... working, family and had even started to drive short distances, and celebrated when I could actually go to the supermarket without being out of it for days afterwards.

Have again relapsed and have been researching, while I have been resting ..... to try and find some pattern to this virus that has stopped my life in its tracks.

I seem to have conquered the boat feeling, but the noise in my ears is nightclub level most of the time and I find I have memory issues, super-sensitive hearing and am starting to see effects from after the times of high adrenaline - not just for bad stress, but also the normal adrenaline that comes from being busy or having a success or too many people around. The fatigue is hard to deal with and I am mostly housebound these days, except for doctors appointments and have hardly driven in 5 months now.

The most frustrating thing about this illness is that the medical profession seem determined to pigeon-hole viruses like this into an anxiety type illness - and their rudeness is offensive - so we have to research ourselves.

I have to ask - has this virus been around for very long? As I said earlier, in this country I have never heard of it before and no one I know has either.

Hi everyone,

I thought I would come back to this thread and give you an update on my progress.

Got to see a neurologist back in march and diagnosed me with MAV (migraine associated vertigo). Little did I know that the pain in my neck was migraine us in nature and was setting off my vertigo. Mandyg I would look into this. There is a great website based in Australia about this. I'm from sydney so I hope that may help you.

My neurologist put me on Sandomigran (pizotifen) which is a preventive migraine med. after 2 weeks of taking these I got back to normal. 90% normal. Driving, shopping, eating out, socializing etc

I do have a really bad time around my period where I suffer from extreme fatigue and dizzy, nausea. I just rest and listen to my body.

I also started seeing a chiropractor that specialises in the gonsteadt technique and found abnormalities in my spine due to a serious ski accident I had a few years back. This is most probably where the migraine stems from. All the specialist I saw ruled out anything stemming from my accident but I knew it had something to do with it.

I researched everything and went on a mission to get to the bottom of it as all drs would say was that it would take time and I would eventually get better. They obviously have not suffered and are so dismissive. I was severely depressed by the time I saw the neuro as it had been a year and saw no real progress.

I hope this helps some of you

Stay strong and positive

Thanks Dizzibee for welcoming me to your discussion. Nice to hear of someone else close by ... well, at least in the same part of the world.

I am finding that the doctors don't seem to have much of an understanding of the effects of this illness and when you don't make the textbook recovery in the standard 3 week period, they appear to be quite lost, especially when a relapse is prompted by bright fluorescent lights ... such as supermarkets or hospitals !! I think that the naturopathic medications I took have helped and I was convinced I had almost beaten this, but it may have been my last visit to the hospital for the cardiac test that set off this last episode. I have been very lucky to be very healthy all of my life and have never taken any regular medicines until now, and prefer to treat naturally if possible. I read on wikipedia - not the most accurate for some things, but useful anyway - that this virus can set off the fight or flight reflex and the associated adrenalin rush. I think that is where I am at now - constantly hyper-aware which of course is very draining on both the body and the brain. Trying to find how to switch this mode off . Would not like to be like this for too long, and will keep researching to see what I can find.

Like you, I had a cervical-spinal injury, but that was over 30 years ago, and the osteopath has been fantastic. I hadn't had many problems since recovering from that injury but as a mum of 4 I haven't really had the time for regular visits anyway.

Again, thanks for including me. I look forward to sharing updates.