Hi Ilia
reading back on some of the postings I just wondered if you ever did go to the neurotologist in Glasgow or the one in London.
I have my testing on Tuesday, been up all night with vertigo and every time I close my eyes it feels like my eyes are constantly moving. Off the medication (although I didn't notice any improvement ) and dreading getting through another two nights. No position seems to help the dizzies! Anything that anyone else has found which helps??

Praying for a correct diagnosis on Tuesday so I can get this out of my head and stop feeling so unwell constantly...

This board has been my lifeline and you guys are GREAT!

Hey littleone - you poor thing I can really sympahise its so hard to cope with. For sure it will subside mine did you will not be this dizzy all the time I promise.

I did not go to the guy in Glasgow cause he sopke to me on the phone and said it would be a wasted trip as its the after effects of Lab's!!Also spoke to Linda in London and she said that its very likely inner ear after Lab's - ahhhhhhhhhhhh - but going to go any how. She is planning to do the tests over a 4 day stretch - but I am so scared of flying in case it makes it all worse...........not sure how it could get much worse but any how.

I have been to the vrt in Aberdeen (is that were u are) in fact I am going on Wednesday - is it Simon u r seeing?? He is very very reassuring. I had a posturgraphy test (that is not how its spelt) but any how - that is meant to be an excellent test for establishing a vestibular problem.

My advice when You feel this bad is to stay as still as possible and avoid as far as possible head movements. Likely Simon will prescribe meds or recommend them as he told me to re-start them but I have not cause of feeding the baby. But I plan to wean him and start the stugeron again. Have you tried that? it was the most eefective thing that I have found.

Please let me know how you get on. Good Luck.

Hey thanks for the post! Yes I'm going to see Simon tomorrow (Tuesday) so I'm hoping I'll get some light shed on this. I had another turn at work this morning, I could feel it coming on so went and got my friend who took me home. I lay on the floor for an hour (someone told me this worked well so I gave it a go and it did pass. I think my friend got a scare cos he said oh right now I can see why we haven't seen you in weeks http://www.healthboards.com/ubb/smile.gif My partner lives in the US so I was due to make a flight at the end of this month, I really need and want to go but this thing really affects how you life your life. The thought of a 20 hour journey scares me right now so I think I'll hold fire until we see what I am dealing with. Thanks for the advice and words of encouragement. Yes I was on stugeron 3 X 75mg a day, it really helped at first but it doesn't seem to be having too big an impact right now (well before I stopped taking it Sunday) I'm kind of dreading tomorrow but I know i have to do this to get some kind of result... fingers crossed keep you posted.

Hey littleone - this whole vestibular deal is so annoying - I know - I am sooooo interested in what simon says - he really is excellent - he wrote me a sheet out with his diagnsosis which is great to read and re-read in your moments of thinking its never going to end.

What are all your symptoms and how long have you been this way? I have the most horrid imbalance 24/7 do you?

I would deffinately query the long haul flight to be honest it caused extreme vertigo afterwards - just a thought. But the annoying thing well not annoying odd is that they try to say flying should not make it worse.

But I have to disagree through personnel experience - for sure you are going to have get right back on meds to reduce the impact. I got struck by vertigo while in America and had to fly home - gee I felt grotty afterwards I will not lie to you. Emsy sorta had a similar experince after a long haul flight after havin Lab's - not as much the vertigo but a bouncing feelin even when still. I guess it very much depends how well u cope with the symptoms. http://www.healthboards.com/ubb/dizzy.gif

Please let me know how u go -oh I go to see him Wednesday so we can share notes. Good Luck!! Thinkin of you!! http://www.healthboards.com/ubb/wave.gif

[This message has been edited by willsmom (edited 10-06-2003).]

Well just back from seeing Simon, he is really nice and had all my tests done. I was very nervous but it all went ok. Turns out I passed all tests bar one the water one and it is looking like the balance in my right ear has gone which is causing me loads of problems. Because the mechanism is so close to my eyes any visual stimulation will make me very dizzy and bring on attacks! Glad to find out whats wrong but it looks like months of rehabilitation and I have to stay off the meds to try and get better! So dizzy dizzy sick times ahead. Doesn't help that I work with computers and am surrounded every day by differnt moving objects! He thinks the ear infection I had which went undiagnosed by the doctor caused this, so I am not happy at all with the doctors for effectively putting me through all this misery.So I guess will keep battling through and hopefully there will be light at the end of the tunnel. Let me know how you get on.

Hey Littleone - Congratulations on getting the tests done - what super news - well not super that your right ear is giving you jip but you know what I mean. I too had the major vertigo thing too after an ear infection that I picked up off my son. I know that you will find it hard to beleive but for absolute sure the darn dizzy thing will settle down. It did for me and thats the truth - but it does take time and I guess thats the tough bit!! Did you have the postugraphy tests (the one were you get strapped in?)thats the one I had and they are going to repeat it tommorrow - not sure why. I just suffer that off balance feeling 24/7 with a horrid sorta movement sensation feeling - uuuhhhhgggggg!!

What did he say about flying to the states? I think u r coping sooo well managing to work alongside this whole thing!! Will let u know how I get on tomm. Bye http://www.healthboards.com/ubb/wave.gif

hi, yes he strapped me to a machine where the floor tilted slightly, is that the one you mean? It was funny cos when he poured the water in my ears he asked me to do my 6, 7, 8 and 9 times table, funny cos I couldn't count and kept getting myself all confused! Had a really bad afternoon, dizzy every time I lift my head and feeling real sick but I'm trying not to give in and take the medication. I keep figuring if I can cope without it maybe my brain will start compensating quicker! He didn't give me a sheet with the outcome though...I'm going to the consultant tomorrow night so maybe he'll give me some more insight... no no flying at least thats what Simon recommended, very frustrating as I haven't seen my partner for over 3 months now and three to xmas makes it 6... this is what gets me so angry.. but I'm trying to think positively that I'll get back on track. My friend has just invited me for dinner saturday and I'm afraid to go cos of the whole visual thing and I end up freaking in the restaurant but you can't hide for ever I guess..., sending you healthy thoughts for tomorrow..hope everything cos well and hear how you get on...

Hey littleone,

How r u - how did your appointment go with the consultant? I have thinkin of you.

I went to see simon again today and it turned out that I scored 0 out of 100 for the vestibular part (thats the last tilt test with eyes closed) hence his dignosis. After the left ear epley I was retested today and scored 50 still well below normal should be above 75 but an improvement. So he did the right ear epley twice and said I should see a vast improvement - like u he said that this will not be over night!! and will take a long while....typical!!

Then he said you know I saw some-one yesturday who had the the dizzies too about your age - before he went on I said ah I think I know who you mean - he looked surprised. I said well I do not actually know u or your proper name but that we had talked here. Obviuosky cause fe patient confidentaility he did not go into details or anything - he just wanted me to realise it is not just me I guess.

I am really hopin this will help - fingers crossed - let me know how u get on tonight!! Oh NO flying for me either.

hey, keeping my finger crossed the epley works for you! He did that manouvere on me too but I didn't feel dizzy or sick when he did it, just bit of pressure in my ear so he reckoned I didn't have BBPV. Mind you I don't know if its the exercises but didn't I feel awful really dizzy.. worst thing is its haircut day and I get panicked just thinking about what happens if I take an attack http://www.healthboards.com/ubb/smile.gif I gave in and took a stugeron this morning, didn't want to as the consultant told me last night this will delay my brain recompensation process but how do you maintain working when you feel like this, thats what I'd like to know! I have a really demanding job, one which I'd love not to lose. It's my friends birthday also on Saturday but theres 16 going out for dinner and I'm wondering if that is going to be just too much for my poor old eyes and brain to contend with... I've forgotten what a social life is... http://www.healthboards.com/ubb/frown.gif Anyway the consultant said to take something like diazepm if I needed but no way my doctor warned me about not taking it because it becomes addictive, something else I don't need or want! So you can take amytripiline and that won't harm the recovery process apparently..! So nothing mindblowing there then! Don't you wish there was a magic pill you could take which would make all this go away.... I'm praying that by xmas if I do my exercises I'm gonna see a huge difference. It's funny Simon mentioned me, he's probably wondering what we have said about him!!! So how are you feeling today?

Hi Littleone

How the hair cut go? hope that u coped ok with it.

About Simon - as soon as he said ah I had this person in yesturday with a similar thing and your age - when I said I know how u mean - he looked like I could have knocked him over with a feather!! he said oh I did not realise you guys talked! But I reasssured him that I did not actually know you and would walk past u in the street without knowing u.........lol.

Gee its so tough working when u have this thing - I know cause I had too wrok too - I took the stugeron for about 1 year....when I stopped it seemed to be ok.......for a time.

Today i am not noticing a massive improvement since the epley. You know what drives me mad is the persistent vertigo feelings - if it isn't that I feel like I am shifting its like the room feels swaying - horrid. Also I get horrid thing - like after the posture test (you had that too) even when the platform had stopped moving I continued to get the feeling that I was - horrid. Also I do not like the imbalance when I walk - like you are made aware of your balance 24/7. I pray that this is not forever - he reassures me its not but...........a bit of doubt is still there.

Did your consultant give you a diagnosis? as such......did he say when you would feel better? what are your main symptoms now?

Well gotta go and do the kids lunch - weird we are only 60 miles away from - so at least we can take heart that we are not alone in this http://www.healthboards.com/ubb/dizzy.gif life!!

hello!

had a bit of a panic before I went for the h/c. My sister drove me into town and boy did I feel sick/weird. I don't know if these exercises doing it or what. I copped out and took another stugeron but to be honest I didn't feel that much better. The room was so hot and there was so much noise and people, inside I was screaming get me out of here but I took some deep breaths and tried to distract myself. It always annoys me when the doctors tell you a lot of it is panic, when it clearly isn't but of course you will panic if you start to feel unbalanced in a public place on your own http://www.healthboards.com/ubb/smile.gif You know they didn't really give me a diagnosis and Simon didn't give me anything to take away apart from the exercises that is. Mine is a weird one I never feel the room spinning, but you know when they put the water in your ears and your good ear reacts well thats how I feel its like in me. But putting that into words is never easy. I have a good homeopathic doctor who has been trying to help me, she sent me a note yesterday seeing how I was and asked if the feelings felt a bit like seasickness, which I guess they do cos I get all shaky. I am managing to sleep now without the aid of anything which is fab, but I often wake up feeling really sick in the night.., if that is what its like to feel pregnant I'm never having kids! Like u Simon and the Consultant assured me that I would get better and this would not last. I also started getting some reflexology to help "balance my ears". I had a session Wed and have another this afternoon. Don't know if it will work but I will try anything to feel better. Did Simon give you any exercises to do??? He only gave me three but I can let you know if you want to give it a go. I guess you are out of ABZ, which direction?? Speak to you soon....Sx

Hi Littleone,

Oh iys horrid when you feel that way when you are out and about. I was like for a long time - your sense feel like they are on over load - you feel like shouting just keep still for a minute so as you can get your bearings. But I promise this intense phase will gruadually diminsh - when I felt sick like you stugeron did it for me - but they say to avoid that for compensation. Hmmmmm - easy to say but hard to just carry on as normal. There is another med called Buckastem which can help the nausea and works very quick you just need to place it under your tongue and it works really quick - worth a thought. I was offered this at the deep nausea stage but I just stuck with Stugeron.

Oh the reason you are finding the stugeron not working when you take the odd one is that it needs to build up in your system over a period of days - so its sort of a waste taking the odd one.

It really is a question of plodding on - not pleasantI know and I promise I have felt the same as you. Oh incidentally it was never the spinning for me either - that was isolated to the very first attack. After that it just felt that things were shifting the room etc and that I was moving around. Also very unsteady and crazy dizzy but not spinning!! so I hope that reassures you a little. Oh your sense of balance does improve too at your stage I was still walkin leaning on the wall!! and feeling quite odd - I am sure you can relate!!

I live in Elgin by the way - do u go on messenger?

I am not doing any specific exercises at the moment in fact Simon has told me to go easy and not just try to do alot (normal stuff if u know what I mean). He has said to avoid too much head movement and try to build up tollerance to walking and standing slowly. I think this is largely because he is sure BPPV is caising much of my symptoms - he also said he thinks I have a great deal of them and not just a small amount. I have to say after the epley I always feel very odd - like very very wozzy and all - but the odd thing is that once again my sense of balance seems better - but still not right. He says that like u this will be a longish haul but I will get better. I think he is waiting to see again how much improvement the eplays have made. hey do u know what u scored on the posturograph - you know the last one where you close your eyes and the platform shifts - the 1st time I scored 0 out of 100! so clearly something very wrong with vestibular balance. But after the epley and 3 weeks later I scored 50 - believe you me as good as that sounds I sure do not feel 50% better. A normal score in that test is like above 75/80.

He has not siad that he is giving me exercises but I think thats were its heading once I pass the tests you know where they wizz your test. Oh that never makes the room spin for me either! just get really disorientated on the right side and find it hard to focus close up. The when I sit up I am plunged back into the horrid I canot stop moving feeling. Even after the posturograph test when the platform had stopped I still felt like I was shifting around ahhuugghh.

You must have what they losely term a viral infection or rather the after effects of it - thats how it all started for me. By the way did u have no response to that bppv test at all? I did not get bppv until after I had recovered the initial bout - but Simon says that its due to that infection. Typical!! but it does give me hope that this will go away - lets just hope its like soon(ish).

When I was at your stage I coped by not pushing it too hard - Iwas off work for 4 months and going back helped to distract the mind. But in the house I would basically just carry on at a slower pace and like u try to reasure myself although horrid was ok.

You mention that panic feeling - I firmly believe that that reaction is autonomic that is it happens without any effort from you - after all how the heck would any body react to the feeling that your balance is horrendous and conflicting visual information. All you can do there is tell yourself its ok and not add further panic.

It can actually make me feel quite faint not faint so much in the head but like a body feeling that i am going to pass out - of course I never have - Simon says that is a reaction to the vestibular conflict. He made me laugh - I asked him if everyone came in upset about what was going on potentially in the brain!! He said that half his job is reasurring people!! but he says that in 10 years no one has ever died of this.....thankfully!!

Do you get the feeling that the enviroment is shifting - for me its intermitenet but sometimes quite intense and makes me feel disorientated. You know one of the hardest things for me is that no matter how hard you try my balance is just not right and that can undermine the confidence.

Gee - long post here - oh I am coming to Aberdeen on Halloween to see Simon again. Hope you are ok - its noce to have found someone close by with this mess http://www.healthboards.com/ubb/wave.gif

hi,sorry for not getting back sooner, couldn;'t get logged onto PC til today! Yes I figured thats where you must live cos the other direction they would have send you to Dundee!As I said Simon didn't give me any results to take away, I must ask him when I next go to see him. He said a month but I haven't had my appointment card through yet. All I know was I passed the postugraph test, he didn't give me a score just said I passed, I probably should have asked. So I guess that determines I dont have BBPV. I really pushed myself yesterday and went shopping most of the day, with frequent stops to stop feeling so unwell... now I am paying for it today BIG TIME and feel really unwell. It's the dizziness, heavy feeling in my head that gets me and I feel so tired. I probably shouldn't be sitting at the computer but I'm stubborn, won't help myself...I have to move back home when I took this so this is the first time I've been home alone and wow no panic, so thats an improvement... i didn't even want to be left alone before so this is getting better. Simon said I would have peaks and then would take an attack and then start going up again til one day it would just go. My refloxology therapist told me to start doing affirmations every day telling myself that my ears are balanced.. I guess its tricking the brain to believe it, I'll give anything a go these days...
Yes I go on messanger or yahoo now and again... when are you most likely about?

Hi Littleone,

Yes that exactly how I recovered form were you are at the minute - I was exactly as you described - peaks and troughs - just like that. I got like you through labrinthytis - and felt just as you describe.

So I agree completely that it will pass - and you will have your normal head back.

What I have now is along the same lines but it has been described as the after effects of Labs - hence the BPPV diagnsosis I think. Funnily enough Simon did not tell me what the posturograph thing showed either the first time around. I am thinking that you must have passed the sections of it that relate to it not being a central problem and that it is vestibular.If you know what I mean? you know the last bit of the test when you are asked to stand still whilst colsing your eyes and then the platform shifts - were you able to maintain perfect posture? that is stand really still. I scored 0 the first time before the epley and I could not stop myself swaying to save myself.

You are doing all the right things in just trying to carry on - exact same advice I got when at your stage. It weird it takes ages to notice an improvement but gradually you will think ah yes that was not nearly so bad this time.

Simon was making my dh laugh (internally he did not show it) when Simon kept saying during the posturoraph test "fight it fight it". In retrospect it was a bit funny. He was really reasurring to me though - saying no its not a brain tumour etc as I have had a bit of a bee in my bonnet about that - stupid I know but cause it is so persistent you start going around in your mind over it all again.

I am on messenger usually early afternoon and late evening, usually after 10.30pm as thats when evryone is sleeping in the household and I can get peace and quiet.(irbuds)

Chin Up!! you are doing great!! you will get through this for sure.

http://www.healthboards.com/ubb/wave.gif xx