Reading through all the posts here regarding Lab I don't want to scare anyone or take away their positive attitude...but....I have had what has apparently been diagnosed as labyrinthitis for 2 years now. I have not suffered nausea or any such complaints as other people but everything else I feel seems similar to what people are describing.

The doctors seem to know nothing about the condition and offer me very little help or encouragement. I have recently had a panic attack whilst driving and I now seem to (according to the doctor) have fainting attacks. This has only started to happen within the last few weeks but on top of the 2 years suffering with lab is really knocking me down.

Since the doctors can't seem to help I thought I would ask people who have experience of this condition. What kind of things can I expect? I often wonder whether what I feel is to do with lab or perhaps I have something else wrong. Does the lab get better and worse on an hourly basis? does it depend where you are and what you are doing? how bad can it get? what is a typical day? how long have you suffered? Do you get "Attacks"? What odd feelings do you get?

Doctors dont seem interested in answering these questions but it would help me stop worrying about all the odd feelings I get from time to time if anyone could help me understand what to expect so I don't worry.

Thanks in advance.

Hello there,

I realise you want answers to your questions, but possibly more helpfully can I ask what doctors haven't been helpful? What type of doctors have you seen? I came up against brick walls until I was seen by a neurotologist - specialists in the ears/brain and most importantly dizziness. They can't necessarily cure you off the bat, but they have a good handle on the condition and can try other treatments for other potential diagnosies if you don't seem to be getting better. I would recommend anyone at all with an ongoing dizziness condition to get themselves under the care of a neuro otologist. If you put 'Which Specialist to See' in to the search engine, that topic explains it.

Also, where are you based, England, USA?

best,

hbep.

When I initally went to the Docs I was treated for an ear infection with drugs to stop me feeling dizzy and sick. This improved the situation a little but after 2 months the Doctor said it was Migrane related and I should try to relax more. After a further 6 months of repeated vists and being told that is was migranes by several different Doctors, eventually one of them decided to send me to a ENT specialist. That happened a year ago. Is was given a hearing test and numerous balance tests and eventually told it was probably lab and it should clear up in a matter of 2-3months. After waiting 6 months I went back to the Doctors and was prescribed anti-depressants because after having lab for this long I was struggling to be positive. After being on a few varieties of antidepressants I come to where I am now. Though I think I am currently feeling the worse I felt since it started as I seem to be suffering with more than just lab.

I have been refered again to the same ENT specialist but will probably have to wait 4 months or so for the appointment (I haven't got a date yet)

Am in the UK - South Coast - Nr Portsmouth

Hi MadEddie.

I feel for you. I've had Lab for 14mths but 2 years must be even worse. I must say I am shocked your ENT hasn not referred you for vestibular rehab. As Hbep says, find yourself a Neurotologist....they are better than most ENT's. I was lucky to find an ENt who specialised in dizziness who gave me the Lab diagnosis which I felt was right for me. But I am due to start rehab soon. Could you list your symptoms? And how it all started? is it worse with colds? My symptoms are not worse hour by hour, I tend to have a good stretch of a week or so then a bad stretch though at the start it was much more up andf down day to day.

xxx

Hi Madeddie,

Welcome to my world also.

I had an acute bout of lab's too over 2 and a half years ago. I am like you still suffering the after effects of it too! drives me nuts. Been round the block with the doctors as well! at one point they infered that I was feeling things as I was stressed I THINK NOT!! So they refered me for tests to the VRT clinic and the poturograph test confirmed a vestibular problem.

I developed BPPV afther the labs so have had the epleys done. This has helped with positional dizzyness but thats about it.

My symptoms are this:

1. Intermitent feelings that either I or the room is shifting - no amount of fidgeting or repositioning myself will left this feeling.
2. Intermitent dizzyness in the head which is in the forehead area and feel quite fizzy.
3. Imbalance when I walk 24/7 of varying intensity - sometimes v mild and other times horrendous
4. Faint feelings that I am on the verge of passing out
5. Like you almost having panic attacks as it drives me nuts and scares me!
6. When feeling dizzy my eyes can feel weird too
7. Things sometimes look like they jump or shift

Hope thats answers your questions - oh I get migraines with auras too!

Ilia xx

What are your symptoms? are they 24/7 do they vary in intensity (YES mine do). The faint one freaks me out majorly and I am afraid to go out in case it happens - no I not agraphobic - I love going out really - just cannot take these symptoms! You are not alone!!

In answer to your questions it started simply one day I was watching tv lying on my bed and suddenly when I turned my head the room span and I fell off the bed. It was like my body took time to react to changes in my head movement so I would stagger a lot and be very clumsy. It only lasted like that for a few days. After this initial peroid I just felt dizzyness, never bad enough to make me feel sick.

I am not sure whether it gets better or worse when I get a cold because rather than having a physical effect on me it more affects me becuase I have something else to think about. I.e. I think about the symptoms of the cold rather than the dizzyness.

When you say your symptoms get better and worse what kind of extremes do you mean?

Ilia: You seem to be exactly describing what I am going through, in reffering to the points you made:

1. I have developed a type of "tick" where I seem to be constantly shifting my limbs minutely. Not sure why and it takes quite a lot of effort to not do it

2.yer I get that
3.same
4.This seems to be what I have started to get. Get tingling feeling rise up from my feet which settles in my stomache and then I feel like I am no longer in the room and am away from reality.
5.Thankfully have only had one full one and a few after shocks. hopefully wont have another - though its got to be better than the first time because I didn't know what was going on
6.I always feel like I have a ring of aching around my eyes most of the time
7.Sounds like me - find it difficult to focus on PC screen and read.

I believe the doctors thought it was migranes because I have had a few of them. Didn't really believe them but I am normally such a heallthy person I just ignored them and assumed it would sort itself out.

I find it difficult to explain how I feel and people don't seem to understand that I am dizzy 24/7 - the only thing that changes is whether I can cope with it or whether its so bad I struggle through the day. When coupling the dizzyness with my almost constant head ache and a heavy head feeling coupled with the recent attacks its a nightmare. I feel like lying in bed all day instead of going to work as I always feel better (relatively speaking) when I am at home.

Thanks for the replies - really ressassuring that I am not alone suffering this long or the dreadful feelings.

Hi there Eddie,

Just to say what you are feeling could be inner ear or it could also be caused by migraine. Migraine, or migraine associated vertigo as it is known, is one of the other diagnosies that will cause these type of symptoms. I see you are in the south. The hospital I am seen at is the National Hospital of Neurology and Neurosurgery in Queens Square, London. I believe this would be the nearest place for you to be seen in a neurotology department. It's quite important to try and get the correct diagnosis for your symptoms as the different diagnosies require different treatments. As I said before it really, really helps to be under the care of a neurotology department to make sure this happens, particularly if you are a long term case. If it's migraine causing this - being told to relax really isn't going to do the trick - there are many daily migraine meds that people with vestibular migraine can be put on to try and get the condition under control - I'm not talking about the type of pain killers you buy over the counter, but the type of drug that requires a specialist prescription. By the way, vestibular migraine is different from regular migraine in that you don't even have to experience actual migraine headaches, just the dizziness, although the fact you have a constant headache could be significant, as is the fact that you have a history of regular migraine. Alternatively, as Emsybobs says, if it's lab you should definitely be doing vestibular rehabilitation exercises. If it's uncompensated lab, VRT, a sequence of exercises designed to retrain the brain to work in tandem with a damaged balance nerve, can really help. Often, if someone has a history of migraine, and has had a balance problem for a long time, they will try them on migraine meds just in case that's either causing the problem, or contributing to it. I'm guessing if you were under the care of a neurotologist they would have done this by now.

ENT's are generalists in the ears, nose and throat and are required to do no further extensive study in to the inner ear. As Emsybobs said, you can sometimes luck out and find one who has taken a particular interest in dizziness and knows their stuff but it's luck of the draw. I saw 2 prior to neurotology - both useless. The fact that the person you saw didn't refer you for vestibular rehab is already a bad sign. If you have a long term condition and are unhappy with the care you've recieved, I'm pretty sure you are entitled to a second opinion on the NHS. You could try and get a referall to the neurotology department in the National in London. The specialists to be referred to are either Linda Luxon or Rosalin Davies. My GP didn't even know what a neurotologist was - I explained and was insistent, and so got my referral.

Hope this helps,

best,

hbep.

In answer to your questions it started simply one day I was watching tv lying on my bed and suddenly when I turned my head the room span and I fell off the bed. It was like my body took time to react to changes in my head movement so I would stagger a lot and be very clumsy. It only lasted like that for a few days. After this initial peroid I just felt dizzyness, never bad enough to make me feel sick.

I am not sure whether it gets better or worse when I get a cold because rather than having a physical effect on me it more affects me becuase I have something else to think about. I.e. I think about the symptoms of the cold rather than the dizzyness.

When you say your symptoms get better and worse what kind of extremes do you mean?

Ilia: You seem to be exactly describing what I am going through, in reffering to the points you made:

1. I have developed a type of "tick" where I seem to be constantly shifting my limbs minutely. Not sure why and it takes quite a lot of effort to not do it

2.yer I get that
3.same
4.This seems to be what I have started to get. Get tingling feeling rise up from my feet which settles in my stomache and then I feel like I am no longer in the room and am away from reality.
5.Thankfully have only had one full one and a few after shocks. hopefully wont have another - though its got to be better than the first time because I didn't know what was going on
6.I always feel like I have a ring of aching around my eyes most of the time
7.Sounds like me - find it difficult to focus on PC screen and read.

I believe the doctors thought it was migranes because I have had a few of them. Didn't really believe them but I am normally such a heallthy person I just ignored them and assumed it would sort itself out.

I find it difficult to explain how I feel and people don't seem to understand that I am dizzy 24/7 - the only thing that changes is whether I can cope with it or whether its so bad I struggle through the day. When coupling the dizzyness with my almost constant head ache and a heavy head feeling coupled with the recent attacks its a nightmare. I feel like lying in bed all day instead of going to work as I always feel better (relatively speaking) when I am at home.

Thanks for the replies - really ressassuring that I am not alone suffering this long or the dreadful feelings.

Hey Eddie,

Its very bothersome isn't it, like you I just think that I would love to sleep it all away. Oddly I actually find that I feel best when i am laying down in a semi-reclined position. I really am at a loss - like you I had the spinning deal too at the start. Then severe dizzyness and it just degenerated into this mess.

I know that I had labs and that started it and I know that there is something wrong with my vestibular system (posturograph test confirmed it) and BPPV. I have no clue about the migraine association. But very oddly my son also suffers form vetigo attacks up to 3 times per week, he is only 5 years old. Hes been having this since the age of 2 and saw a kid Neurologist in London on Saturday.......they say he has MAV - migraine associated vertigo.

All I know is that these type of symptoms are so persistent and getting a diagnosis is like finding a needle in a haystack! Hmmmmmmm

Just cannot wait until this mess leaves!

Thanks for the replies it is definately food for thought. I think the trouble seems to be how good the person you are refered to is at diagnosing the problem. Obviously I am not a qualified doctor and thus find it hard to question the diagnosesis I am given but I would hope that the "specialist" would know what they were doing. I have again been refered to the same specialist (I am still waiting for a appointment date) so I will question him about MAV and possible further referals. It seems such a shame that you have to research your own condition to such a degree so that you can fight for the correct treatment :(

I was happy with the original diagnosis from the first visit to the ENT specialist - mainly becuase he said it would go within 2-3months, he did give me some excercises which I did for 3 months which had very little effect. His advice was "Make yourself dizzy 3 times a day" - not hard, am dizzy 24/7 :P but when the 3 months were up it all got a lot worse and I no longer did the excercises and subsiquently lost the excercise sheet so couldn't restart them.

Hi Willsmom, I've often felt that having this condition for the last 2 years has taken away 2 years from my life - so having it at 5 is awful. From what hbep says it seems that MAV can at least be controlled which is positive.

Mad Eddie - I have exact symptoms as Ilia - sounds like you have them too. Hbep is right in that the fact you havent been referred for VRT is worrying. I'd go to the London hospital. You've had this long enough. I also get the tick thing you describe, it's like a pendulum inside my body. Let us know how you get on xxx