On and off sickness with labyrinthitis

Hi Mandyg,

I never resort to medication and tried all Chinese herbal medicine, acupuncture, massage, meditation etc. you name it, I tried it.

But since I was going on past 12 months and found busy areas, traffic, grocery stores, airports etc unbearable (had to be wheelchaired on and off a flight due to complete vertigo episode) I had to look at something to help me. I am seeing my neurologist again next week and hoping to slowly come off the meds.

I am currently having the holster ECG done to rule out anything to do with my heart.

My accident was a few years ago but once I had my spine x-rayed and seen to by the chiropractor they could see the residual damage. Whiplash and severe injuries can have ulterior effects years after the event.

Obviously this is another holistic approach but believe this is being effective.

I don't want you to go on for years like I did without seeking out all possibilities. I have never seen so many drs and specialists in my life. But I'm getting to the bottom of it. Of course every person is different, and you will know your own body.

As for the flight-fight response I totally agree. Learning to breathe properly and not just taking deep breaths helps. But I do take a Valium when I have to be somewhere and I am having a severe episode. I must say this is only in extreme cases and certainly do not take one of these every day, maybe 1 tablet every 2-3 months.

I hope this helps you.

Hi All

Thought Id update you all.

Well I got ill in August and diagnosed with Labyrinthitis officially at the End of August/beginning of Spetember.

Ive never been given any medication because by the time I was properly diagnosed the first few initial weeks had passed and they said it would start to correct itself (the balance) and if they gave me meds it might hinder the progress.

I got engaged the beginning of September but due to the anxiety I could barely eat any of my anniversary meal and when my partner wanted to go for a romantic walk on the beach (where he planned to propose) I broke down in the car and couldnt get out of it . He is very loving and supportive though and said lets at least go to the little cafe for a coffee or an icecream - which we did and I felt better so managed it and we made it to the beach and I am now set to be a Mrs :-)

Anyway I was doing well, making progress and tried my best to fight the fight or flight warning I use to get - my anxiety got to bad that we went to a wedding fayre, and the room was rahter small two connecting rooms so appeared crowded and it kept triggering the blurry head feelign so I would have to keep leaving every two seconds, but when we went to a second spread out and open fayre I was fine.

I was doing well - felt much better - can actually do the school run - and last week on Monday even did 5hours of volunteering at a local animal rescue and then I went to a shop on Wednesday, downstairs was fine as it was lit but dark, but I went upstairs and it was white strip lights and really bright, felt sick and had to leave the shop and Ive not been right since. I also have come down with a cold the last 4 days which Im convinced is setting me back again.....

my son filmed me trying to stand still with my hands by my side and eyes closed yesterday (its a test the doctor did on me) and I can see myself in the video rocking from side to side. :-(

I am so fed up of this illness - its been 3.5 months almost and Im still struggling with it.

Im finding warm milk help with the nausea but the nausea means I have little to no appetite so in the last 3 months I have gone from a healthy, happy and sociable 12st 4lbs woman to an 11st 4lbs nervous wreck.

Im fighting the anxiety as I did before. One step at a time but I beat it at 15 and learnt to cope so I am again and keep tellign myself that if I stress, it will trigger the labyrinthitis, and if I worry about the labyrinthitis it will worsen the anxiety - its a vicious circle. I have even handed in my resignation as I was no longer able to get sick pay and my employer was unable to keep my hours for me

It does upset me though that everyone else I now to have had this illness has gotten better with a week or two - and here I am - 12 weeks on :-(

Does anyone else find computer screens/phone screens set them a bit wonky again? mine seems to be computer screens / sometimes phone screens and white lights......and crowds dont help but Im getting there with these. Lately though I have nausea (not actually been sick though) , blurry head, and loss of appetite

hope everyone is ok - if anyone would like a penpal through these rough times - and afterwards - Im happy to write if you send a PM.

good luck all

Thanks again for your feedback Dizzybee.

I haven't yet seen a Neurologist - did get a referral and appointment - but by the time came to see them, was doing so well I didn't feel I needed it, was working closely with the osteo and naturopath and was recovering very well, so I cancelled but left the option open to re-book if need be. I don;t live near a capital city so have to ravel to Melbourne to see them.

This relapse took me completely by surprise, and before I start making appointments to see specialists will do all the research I can so I am not wasting the appointment by not being informed more about this illness. As I said, I had never heard of it before.

I wish you all the best with your progress, and all other contributors here. Will keep in touch.

Dear SammyKaye,

I know exactly how you feel! I am still suffering too and in my 12th week now

Im getting good phases and bad phases, but my balance is still off. I like you was a happy individual and now I get afraid to arrange anything incase I am not well enough.

I am just about coping to stay at my job which involves staring at the computer all day long but I get very tierd and have to go straight to bedwhen I get in.

I don't eat as amuch as I used to and have lost wait because of it. I cannot stand large noises or crowds as this makes my head go crazy and I loose my balance worse.

I still rock from side to side. The anxiety is only better after I have had a few good days but soon gets bad again when I have a bad day. Its the sensation of movement that gets me, it frightens me as I never feel safe. Im also afraid that this will never go away and that in itself makes it worse.

Drs tend to have little sympathy or answers to this horrible illness, there is definitely a lack of support which doesn't help as you feel like your on your own. I feel like my life is no longer mine and I feel depressed because of it. Its an awful illness. Some days you question yourself and wonder if its all in your head but then I know it isn't as so many of you have suffered in the same way. I just hope it goes soon. Im still on serc and have been for a while now since my first intial attack back in May, but after getting very stressed out it came back and hasn't left me since. Its so horrible.

Do you ever feel like your head is almost like a fishtank, and things are moving around in it and that makes you feel you cant think straight, see straight etc?

Hope things start to improve for you xxx

Dear SammyKaye,

I know exactly how you feel! I am still suffering too and in my 12th week now

Im getting good phases and bad phases, but my balance is still off. I like you was a happy individual and now I get afraid to arrange anything incase I am not well enough.

I am just about coping to stay at my job which involves staring at the computer all day long but I get very tierd and have to go straight to bedwhen I get in.

I don't eat as amuch as I used to and have lost wait because of it. I cannot stand large noises or crowds as this makes my head go crazy and I loose my balance worse.

I still rock from side to side. The anxiety is only better after I have had a few good days but soon gets bad again when I have a bad day. Its the sensation of movement that gets me, it frightens me as I never feel safe. Im also afraid that this will never go away and that in itself makes it worse.

Drs tend to have little sympathy or answers to this horrible illness, there is definitely a lack of support which doesn't help as you feel like your on your own. I feel like my life is no longer mine and I feel depressed because of it. Its an awful illness. Some days you question yourself and wonder if its all in your head but then I know it isn't as so many of you have suffered in the same way. I just hope it goes soon. Im still on serc and have been for a while now since my first intial attack back in May, but after getting very stressed out it came back and hasn't left me since. Its so horrible.

Do you ever feel like your head is almost like a fishtank, and things are moving around in it and that makes you feel you cant think straight, see straight etc?

Hope things start to improve for you xxx

Dear SammyKaye,

I know exactly how you feel! I am still suffering too and in my 12th week now

Im getting good phases and bad phases, but my balance is still off. I like you was a happy individual and now I get afraid to arrange anything incase I am not well enough.

I am just about coping to stay at my job which involves staring at the computer all day long but I get very tierd and have to go straight to bedwhen I get in.

I don't eat as amuch as I used to and have lost wait because of it. I cannot stand large noises or crowds as this makes my head go crazy and I loose my balance worse.

I still rock from side to side. The anxiety is only better after I have had a few good days but soon gets bad again when I have a bad day. Its the sensation of movement that gets me, it frightens me as I never feel safe. Im also afraid that this will never go away and that in itself makes it worse.

Drs tend to have little sympathy or answers to this horrible illness, there is definitely a lack of support which doesn't help as you feel like your on your own. I feel like my life is no longer mine and I feel depressed because of it. Its an awful illness. Some days you question yourself and wonder if its all in your head but then I know it isn't as so many of you have suffered in the same way. I just hope it goes soon. Im still on serc and have been for a while now since my first intial attack back in May, but after getting very stressed out it came back and hasn't left me since. Its so horrible.

Do you ever feel like your head is almost like a fishtank, and things are moving around in it and that makes you feel you cant think straight, see straight etc?

Hope things start to improve for you xxx

Dear SammyKaye,

I know exactly how you feel! I am still suffering too and in my 12th week now

Im getting good phases and bad phases, but my balance is still off. I like you was a happy individual and now I get afraid to arrange anything incase I am not well enough.

I am just about coping to stay at my job which involves staring at the computer all day long but I get very tierd and have to go straight to bedwhen I get in.

I don't eat as amuch as I used to and have lost wait because of it. I cannot stand large noises or crowds as this makes my head go crazy and I loose my balance worse.

I still rock from side to side. The anxiety is only better after I have had a few good days but soon gets bad again when I have a bad day. Its the sensation of movement that gets me, it frightens me as I never feel safe. Im also afraid that this will never go away and that in itself makes it worse.

Drs tend to have little sympathy or answers to this horrible illness, there is definitely a lack of support which doesn't help as you feel like your on your own. I feel like my life is no longer mine and I feel depressed because of it. Its an awful illness. Some days you question yourself and wonder if its all in your head but then I know it isn't as so many of you have suffered in the same way. I just hope it goes soon. Im still on serc and have been for a while now since my first intial attack back in May, but after getting very stressed out it came back and hasn't left me since. Its so horrible.

Do you ever feel like your head is almost like a fishtank, and things are moving around in it and that makes you feel you cant think straight, see straight etc?

Hope things start to improve for you xxx

Its nice to know from coming on here your not the ony one suffering with these horrible symptoms. Mine started about 10 years ago when I was only 18 I can just remember my vision going extremely blurry and I had the worst headache ive ever experienced!after that came the vertigo and spinning spensation/unbalanced feeling. The first doctor I saw said it could be wearing my hair up to tight lol he didnt even check my ears, eventually I was diagnosed with a bacteria inner ear infection given antibiotics which started to work but within another week it came back!! they gave me more drugs but by that time the damage was already done!it wasnt till my parents took me to a and e at my local hospital that a doctor actually cared and reccomended a specialist. I had loads of tests done and he came to the conclusion after ruling everything else out that I had damage to my labrynth (inner ear)and he put me on the waiting list for vrt which at the time I thought was a load of nonsense.. but actually was the only thing that worked. Its not a quick fix and takes determination as it can make you feel worst before better but doing the exercises daily and trying to get back to a active normal life really helps. So anyone doing vrt do stick at it because I went back to work and doing things I was so afraid to do before.

In the last week I have started suffering with the exact same symptoms again..went to the doctors, who said I have another infection. so im hoping it will clear up and then I can do the vrt I was given from before, if not I am going to see a specialist again! because from my experience doctors at your local surgery just dont have the time and experience and your health is so important. Anyone who wants to try the vrt they have examples online that you could try but best to be assessd by a proper phsiotherapist mine was fantastic. There is light at the end of the tunnel and although ive gone back again you have to stay positive :-)

Hello everybody,

I've been diagnosed with labyrinthitis a week ago because I had constant dizziness and nausea for 2 weeks. Although I've been to the doctor twice I am so scared that I have something worse. Sometimes I feel better and sometimes dizziness comes in, i cant focus on my studies (1st year student at university). Sometimes I get nausea as well and im really afraid. I am 18 years old and I keep thinking I have something more serious because it doesn't go away. Do you think this is normal for labyrinthitis? please reply soon.. Im very scared.

Hello andreanic,

Please don't be scared about your diagnosis. From what I have read, some people recover from this within 3-6 weeks and are perfectly well again. I hope that is what happens for you.

Some of us have come to this page to get more information if we haven't recovered - so at this stage, don't get yourself stressed over things that may not occur. Take your doctors advice and rest to give your body the best chance of recovery. As you are young, talk to your family or a trusted friend about your fears, so you do not feel as though you are facing this alone. There are also facebook groups you can join to alleviate your worries.

If this illness does continue, your doctor may refer you for further tests or specialist advice. Take direction from them and let them know your fears. Knowing the facts about an illness can take away unnecessary worries.

Best wishes.

Mandi is right is does normally clear up by itself, try not to worry and do things that might help you relax. Your symptoms sound just like mine so it's not something really serious and if the doctor has diagnosed you. Take everyday as it comes hopefully it will go in the next week or so. How are you feeling mandi? Better I hope x

Hi Charlene,

Thanks for asking. Coming out of this latest relapse now, and feeling confident that I can resume most normal activities now - although I will continue to avoid supermarkets and hospitals for a while.

The adrenaline overdrive is still occurring but am taking a good mix of herbal remedies from the naturopath and Valium once a day (although I think that can begin to be cut down now).

Definitely on the improve, and I agree with you, a positive attitude is so important to either conquer or learn to live with this illness.

How are you going?

That's really good that your seeing improvement, I think stress and things can bring it on!When were you diagnosed? Do you think something triggered the relapse, I'm the same I hate going supermarkets so overwhelming I do online to avoid going. Natural remedies can sometimes be very affective! Drugs aren't always the answer are they. Do you manage to work?well my symptoms slowly improved after I first had the illness ten years ago vrt helped me a lot. But about a week ago I suddenly felt awful again very disorientated and spinning sensation I went to the doctors and he said I had an infection after checking my right ear, it does feel like it could be a virus or infection because I've got bad earache aswel as the loss of balance. He gave me antibiotics but they haven't worked so I'm hoping it will pass itself and then I will probably have to do the vrt exercises again as I've already got the weakness. Have u seen an ent I've heard mixed reviews about ones they've seen. The one I saw was ok he referred me to The physiotherapist. Have you tryed vrt? I think the worst thing is explaining it to people and how you feel.

Hi Charlene,

I put quite a long description on a couple of weeks ago, so you wont have to scroll back too far. It was June this year and I have had a few relapses, all seem to have been set off by fluoro/led bright lights like supermarkets and hospitals (I was only there to have tests to rule out anything sinister - just a CT Brain and Cardiac Echo). The hospital caused relapses seem to have been worse than when I have felt bad after going into supermarkets. Still not really sure why.

After the CT - something seemed to change and that was when the fight or flight kicked in - and kicked in hard. Off to the hospital ER for the first time in my life and then to a larger hospital by ambulance. They checked to ensure I hadn't had a stroke and then started talking about anxiety attacks. I have never had anything like that, and for anyone who knows me, knows that it is most unlike me - just not the type of personality. Have always been one of those people who thrives on stress.

After that, with some Valium initially, consultations with a naturopath and osteopath because of shoulder and neck pain that had developed with this illness, I came good. Got back to around 90% of my normal speed, then went to the hospital for the Cardiac test that set off the next relapse. I did find that the balance issues did not return - it was just extreme fatigue, nausea, blasting noises in my ears and feeling vague. It has taken a month to start to feel good and until a week ago, I was pretty much bed-bound, so it was a nasty relapse. We own and run a fruit farm, so haven't been working (poor hubby has had to work extra hard) but it's harvest for us now, so he wanted me to rest to be ready for a very busy 4 months.

Have delegated grocery shopping - even my teenage son has taken on that job (chauffeured by his grandparents), will avoid hospitals and hope this recovery continues.

I had earaches when this first hit and expected it was an ear infection of some kind - but had never heard of this. Did have a course of antibiotics and it seemed to improve a bit but came back very quickly and the blood test showed no infection, so that wasn't repeated.

If you are a facebook user, have a look at the groups - I was really shocked to see almost 600 people in the group I joined explaining all the weird symptoms I had. There's great stuff on there and lots of peoples experiences.

It's unbelievable how different it affects people. So you haven't been given an actual diagnoses of the cause of these attacks? That's what I don't want to go back to the doctors for them to give more antibiotics when it isn't even a bacterial infection. In most cases I think it's a viral which unfortunately has to run it's course, I think these symptoms that follow is the damage the virus or infection has done on the inner ear as it's so delicate. I do remember feeling quite bad few years back when I was working at a computer all day this doesn't help!so you were reassured by the scans that's there's nothing else going on, I haven't had any scans done had lots of tests done by the ent I'm pretty sure it's still the inner ear problems. I guess it's like when people have a weak knee or something it flares up at anytime. I am considering paying to see an ent in London that I've heard positive things about. Ahh that's nice that you have a supportive family mine are really good I have a 4 year old who keeps me positive it's even harder when you have kids you need to be looking after!! I will definitely look at that group I'm amazed at how many people this type of condition affects but seeing that people have come out the other side gives us all hope.