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  #1  
Old 23-11-03, 21:51
irbuds irbuds is offline
 
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Off balance and dizzy

Hi,

Finally I have met some-one else with this nightmare!! I have the exact same thing.

Can you go into the chat room? I would love to talk to you.

Will try there tommorrow night say 9pm Monday.

Thanks
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  #2  
Old 24-11-03, 09:59
Jules31 Jules31 is offline
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Hi

I can't do the chat room tonight but can't believe either that someone knows how I feel. I feel so alone and dizzy. Let me know a little more about you.

Jules
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  #3  
Old 24-11-03, 21:59
irbuds irbuds is offline
 
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Hi Jules,

Got your message

I would love to chat to you in the chat room - do you have a time that suits you?

Well you asked for info so here goes.

I too have the feeling that I am constantly off balance and dizzy!! it would make me feel very horrendous and scared to move around. I would get extreme feelings that i was about to pass out - of course I never did. I would also feel in a state fo constant movement even when I was still. It would range from a bouncy feeling to the feeling that I was falling through space can u relate? But probably the most debilitating aspect is feeling off balance and in the early stages very very dizzy. i say early stages that lasted months.

I was initially diagnosed with labrinthitus its a viral infection of the inner ear that makes u feel very horrendous. Went to the ENt who said oh yeh that will go. Then after another 2 years of still being NO better - I thought I cannot live like this - i was afraid all the time to go out alone and I just could not stand being dizzy and off balance.

Well this time the ENt said hmmmmm maybe the problem is central - that is in teh brain. I nearly hit the roof - but first he said that he would try VRT. Its a clinic that helps with exercise to rehabiliatte the balance centre in the ear.

So went there (by this time seriously wondering what was wrong) my own GP and the ENT insisted that it was mainly anxiety perhaps triggered by an inner ear virus - no joke. By the way the virus is symptomless in terms of ear ache and all there is none.

Any way he listened (audiological scientist) at the VRT and said straightaway it WAS inner ear. Did various tests (not the ENG as it is not always conclusive especially if u had the symptoms for a while). He concluded that I had BPPV and did an epley moneveur in each ear. Any how that has reduced a great deal of the dizzyness but I still feel off balance and as you describe in your post really.

You will be thinking what are you doing in the panic forum then. Well I had GAD in a major way before and got out of that whole mess and later developed this. BUT this is difffrenet to anxiety this whole motion thing is 24/7 - and of course I am anxious who wouldnt be?

I am not saying that whats worong with you by any means - I actually know several people who have this problem and most of us have been fobbed off by the medical proffesion as well.

The good news is that either way you will get better - I really like to here how you are getting along. Its a horrible thing to go through - I KNOW.

Well thats it for now - perhaps you could share your experince also.

Oh have you read anything about dizzyness and balance?
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  #4  
Old 25-11-03, 10:21
Jules31 Jules31 is offline
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Hi Ilia

Well where do I begin, I started to have panic attacks in February of 2002. Then things just seemed to snowball from there. Ikept feeling dizzy on and off, that was just dizziness inside my head, not where the room moves or anything like that. Then by Oct/'Nov last year I was feeling really bad, really dizzy and off balance, as though the floor was bouncing underneath me or as though I had just got off a fairground ride all of the time. My dr keeps saying it's anxiety, but took blood tests, sent me for an ecg. Still nothing it's carried on for months and months since that, it eased slightly earlier in the year though I still had it everyday just not all day, now it's back all day and all night. I feel as though I'm moving about all of the time, when I stand still I feel like I'm swaying backwards and forwards and then of course I also feel faint and weak.

I'm seeing a psychiatrist and he has presecribed me meds but they haven't worked so are currently being reassessed. I was worried that I have some brain disorder and so was sent for an EEG but that came back ok too. Still the symptoms persist. I have never had them as bad as I have them at the moment.

I have never been to see an ENT because my dr didn't think it was anything to do with my ears, mainly because objects never spin with me, do they or did they with you?

So I'm still struggling on. Because I get so scared of something neurological my dr has said he will refer me to a neurologist if I want but I don't want to have to do that. He has said that it is only to give me a second opinion not because he thinks that anything is wrong.

Do you find that anything helps with your dizziness and moving feelings. The only thing that I have found is sometimes after I have had some alcohol I feel a little better, though I have to have about four or five glasses now, it used to work with two glasses of wine.

I have read lots and lots about being dizzy but still never seem to get anywhere with it. I am just so afraid all the time of the way that I feel. Is this how you are.

I would like to chat sometime but it's a bit difficult in the evening because I don't use my pc very often at home. I usually check this site whilst I'm at work

anyway that's just a bit about me, I'm off for another unbalanced and dizzy day

Jules
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  #5  
Old 25-11-03, 17:48
Belle
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Hi Jules, I was just wondering--had you been on a flight,cruise or long car trip before all this started? You said the room didn't spin, that you felt it--do you mean it felt like you were spinning? Just trying to help..Mine started out with the room spinning every time I dared to move but after that it went to this constant rocking,swaying inside myself.It was an inner ear problem,BPPV--that started all this. It might be worth a trip to a good ENT...At any rate, as human beings, when we feel like this we tend to think of the worst.If all your test are normal, then its the very hard task of convincing YOURSELF of that. If you notice--we feel something not quite right and then we start with the WHAT IFS and THEN it all gets worse--a vicious circle. I would try the ENT just to be sure. Good Luck, Belle
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  #6  
Old 25-11-03, 22:49
uryjm uryjm is offline
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I have experienced something close to what you describe. The difference with me is I KNOW mine is anxiety! The sensation is a weird one, and hard to explain. It feels dizzy, but not the dizzy I'd feel if I turned round and round and round and then tried to walk a straight line. It's more a lightheadedness, a feeling that something's not quite right. Sometimes it feels as if I'm about to levitate and float off the surface of the planet. I also had that bouncing feeling in the early days of panic when I wasn't sure what was happening to me. But I hope that yours passes in the way that mine did.....

Jim

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  #7  
Old 26-11-03, 02:02
irbuds irbuds is offline
 
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Hi - I maybe have the benefit of having suffered from GAD prior to this balance problem. I never ever once felt unsteady or dizzy 24/7 and that I think is the difference. The type of unsteady I have now is 'real' in the sense that unlike panic no amount of breathing, relaxation or self talk moves it. Mine actually is a sensation of movement which they acknowledge is inner ear. When I had GAD the type of dizzyness I felt was in intense bursts and did nt affect my balance once it passed.

Also when I first got struck with it i had real vertigo (the spinning room type) which I ran to the docotr with - she could clearly see a nystagmus (involunary eye movement) which is caused by a vestibular upset and not anxiety.

That said I think anxiety makes this whole thing worse!! big time.

Jules I am wondering how you manage to work? can u walk around perfectly normally? I am also wondering if you feel worse with certain movements or head positions? Oh you said that your doctor has said that its only inner ear if you spin - NOT true!! Vertigo is like anything else its on a scale. The mildest form is the sensation that you or say the room is moving slightly through to the very severe end which is that you are sick to the stomach and the room spins and looks visually unstable.

An ENt is you best bet - a neurologist is not a good bet as they have little experience with dizzyness. Oh I meant to say that these symptoms are very very very very rarely a symptom of any serious nuerological condition - less that 0.04% of people with this type of symptoms have anything serious. Of that 0.04% tends to be something called an aucustic neuroma which is non-cancerous!! but very unlikely as the main symptom is deafness. I and most others with this on-going problem get an MRI done which puts to bed your fears. Mine was clear and so has EVERY other person having it done that I know. I know lots and lots of people with this problem. Oh and I am not sure were you live but that absolute experts on balance and dizzyness disorders are neurotologists (not to be confused with a neurologist)there are 2 that I know of in the UK. One expert is Prof Linda Luxon she practices at the National Hospital in London and will take NHS and private referals form outwith the area. I plan to go myself next week. Can you describe your symptoms in any more detail?
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  #8  
Old 26-11-03, 14:45
Jules31 Jules31 is offline
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my symptoms aren't altered by any form of movement and nothing seems to make them any easier by trying deep breathing or trying to relax.

I do work, I'm a lawyer and have no idea how I manage to get through most days. To everyone else i seem normal because I just don't tell them how I am feeling but I'm terrified on the inside.

It's hard to describe my symptoms, sometimes when I'm standing or sitting I feel as though i'm swaying backwards and forwards. It's definately a feeling of movement within me. It also affects my legs and makes them feel weak and as though they are swaying too. Sometimes I get feelings where it feels like the inside of my head moves, it's kind of a whooshing feeling not really a full head spin. I never see objects or anything move, though sometimes I get blurred spots in my vision usually in my left eye.

My head often feels tight around the forehead and across the top.

The movement sensations are weird sometimes it just feels like I'm bobbing up and down in a boat or rocking. It's so hard to explain. As I've said the only thing that seems to ease it is if I've had a drink and I wouldn't have thought an ear disorder would disappear with alcohol.

I have previously been given medication for my ears just to see if it helped at all but it didn't. I had a few days where I felt a lot better and the moving feelings went but if I'm honest I think that was because I thought I've got something wrong with my ears and stopped worrying for a couple of days. I don't know.But then it all came back even though I continued with the meds for months.

I hadn't been on a boat or an aeroplane before it all started happening, well I had been on a ferry but it was sometimes later before I got the symptoms, too long to have made a difference I would have thought.

Ilia, are you saying that your symptoms are from an ear disorder which is just made worse by anxiety. I'm a little bit confused. Do you really think that my symptoms could just be from anxiety.

As I type this I don't really feel like my head is moving but it does feel very tight and I have a headache and feel vague and remote which is another common feeling I get.

Everyone keeps telling me that my symptoms aren't of anything neurological and that neurological diseases don't manifest themselves in this way but I just find it so hard to believe for some reason

Well that's enough about me, let me know if you want to know anything else. Thank you so much for your support.

Jules
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  #9  
Old 26-11-03, 15:00
Jules31 Jules31 is offline
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forgot to say that I feel really faint too a lot of the time, is this common. I have never fainted and my vision doesn't dim but I just feel weird like I might
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  #10  
Old 26-11-03, 19:23
irbuds irbuds is offline
 
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Hi Jules,

The first thing that I would agree with whole heartedly is that neurological disorders do not manifest themselves in this manner either. I can realte to exactly the symptoms that you describe! and I know that for me its been a deffinate inner ear problem that triggered off the whole thing BUT i do think that anxiety about the symptom does make them worse.

I think that you should pat yourself on the back for coping with work! gee you are braver than me! I am nervous going out and about INCASE I feel more off balance and faint.

I am obviously not mediaclly qualified to say if your symptoms are purely anxiety or may be because of some degree of vestibular upset. But what I can tell you is that there is NO magic pill that will stop these sensations of movement - I wish - I would have been the first in line. Also tablets that you can talk for ear problems (i take it u mean vestibular suppresents such as stugeron, serk, stemitel etc)very rarely have any effect whatsoever on theses type of symptoms. Also they tend to be harmlful in the long run as they dampen down vestibular messages and hinder compensation.

Its intersting that you say that these sensations are not made any worse by movement or otherwise. Usually if there ear involvement you would find certain things quite unpleasant - for instance walking or similiar things.

But all the symptoms sound very much like what I and many others suffer from the feeling of movement in youre head and in your body that goes into you legs is classic of inner ear. But one thing I know is that anxiety is a clever little devil and if you are scared of these feelings and dislike them strongly and devote lots of time thinking about them then YES anxiety could very well be the cause and certainly a contributing factor.

I too get the faint feeling and am trying to decide if its the ear or anxiety thats causing it. Like you I have never actually fainted but feel like I might. For me the feeling is very intense its like my body feels very light and bouncy and my head extremely lightheaded and then it feels like i am losing consiousness - like you NO dimmimng of vision or actual loss of consiousness. Does that sound like what you experience? I think that this is the scariest of all the symptoms I suffer form.

But the most persistent feeling is the one that you describe the constant feeling of motion and also for me the worst is the sensation that my balance is off. If fore instance I stand with bare feet quite still i feel as if I am bouncing up and down quite alot or rocking - its soooo horrid. When ever I walk it always feel like there is a problem like something is off. It makes me feel that walking is a bad idea and I put off going out to much etc. Does that ring any bells.I also can tell you for a fact that this is a common symptom of inner ear problems and anxiety.

I also get a lightheaded feeling that is not as bad as the faint feeling but as you say can make u feel that faintness is on the horizon and not far away.

I know for an absolute certainty that anxiety can make you feel this way - been there and done that.

I am like you is this all anxiety or is something off in my ear still - its strange and frightening. I know!!

Apart form any thing else like you I just would like to get better - I am notfamiliar with your history and all - do you have a tendancy to anxiety any way? I certainly do.

Look forward to hearing form you. Ilia xx

PS You are not alone - so chin up.
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