Hello people.

For those of you who know me - hello!! If you remember i posted a while back - about 18 months ago searching for help.

Well, im back again asking for your great advice.

If you remember i posted this :
http://www.healthboards.com/boards/showthread.php?t=153302

Anyway, i just want to know what reocurring viral labs is? You see all my problems started in Nov 2003 with a bad virus, and then i got struck down with what felt like the same kind of virus in Nov 2004, and now recently again this month. Thats 3 times. Is this what happens with re-occurring viral labs? Is it a viral infection that keeps coming back, attacking the body and the balance organs mostly? Everytime the virus (or whatever it is) comes back im left with severe anxiety / panic and a horrid spaced out feeling (with lightheadedness / dizziness) - which can be severe and last for months. I seem to start to recover very slowly and then WHAM, it hits me again?? Does this sound like reoccurring viral labs? I have been diagnosed with CFS / M.E - but ive always doubted it and even some of you guys here doubted my diagnosis, as my symptoms are so similar to yours.

Anyway, i did have an appointment with Prof. L. in London, but i cancelled it once i got my CFS diagnosis. Do you think i should go and see her, if this sounds like re-occurring viral labs??

i hope you are all as well as possible

Jon

Jon,

I read your old posts. Sounds just like me. I got a severe ear infection and about 2 1/2 weeks later this hell that never went away. Never had severe vertigo just a strange dizzilike feeling. I have lots of pressure/fullness in my head and ears and some vision problems. I was very nausous in the beginning.

Did you ever get releif and return to normal between episodes? Or do you just start to feel slightly better and then wham it hits you hard again? Also, your friend that got it too, did he recover?

I haven't found too many people on these boards that started out with an ear infection.

Take care,
Gloria

hey there

i never returned to normal, i just had spells where i felt better. Not great, but better.

my friend is ok now. He took penicillin for 6 months and he seems fine

Hello,

I'm in the strange position of having had both a vestibular disorder in my thirties and ME/CFS in my twenties. I had been recovered from the ME for a long time when I got the vestibular problems. If it's any help I never ever felt dizzy with ME. I know of one other person with ME and oor experiences of it are similiar. During the time I had it I was tired in a way that is almost hard to convey - it is, as the name suggests - cronic. Some days it was all I could do to crawl from my bed to go to the bathroom. Other days I was much better than this, but staggeringly high levels of fatigue were a big part of it. With ME your muscles will really ache - I had a problem holding my arm above my head for any length of time.

Although you will feel very tired with a vestibular disorder, the big difference for me is that with ME it affected not only my head but my limbs and body. ME also caused cronic brainfog and concentration problems, but again, no lightheadedness. To put it straightforwardly, with a vestibular disorder I felt like I was well from the neck down. With ME I felt like my entire body had been taken over. ME also affected my body temperature, I'd get hot flushes, like I was running a temperature when I wasn't.

Don't know if that is in any way helpful, but beware of the diagnosies doctors hand out when it comes to dizziness. It's an area not a lot of them know about and they will often reach for something that sounds plausible but isn't necessarily correct,

best,

just wanted to know what CFS and ME are...............thank you

cfs = CHORNIC FATIGUE SYNDROME
M.E. = Myalgic Encephalomyelitis

What you say is very true. That is a very good way of describing it. The thing is, people can have mild M.E and so thier fatigue is not as bad as neurological symptoms. For example, i get achyness, and i have poor stamina - well i did a year ago, i gave up trying to do things as it was too tiring. For example, if i tried to go to town to walk around - id get really spaced out, anxious, i couldnt conentrate, and my legs would be in total pain after about 30 mins to an hour.

Its hard to describe dizziness though - i have had a few bouts of true vertigo - only for a few seconds. Its never caused me to fall over though. I am always off balance, and i notice sometimes that i tilt my head to one side. I have a 24/7 brain fog and cannot concentrate for long on tasks. So maybe my diagnosis is correct??

Its like you say, the fatigue issue has worried me all the time. I think , well if i have M.E i shouldnt be able to drive, or walk here, or do that etc. i think i should be laid up in bed all the time. The neuorlogical symptoms however, are very similar to what some people describe here who have viral labs. ITs always playing on my mind. I want to go to London to see Prof L, but i think it would be too much for me - do people with labs feel like that?

Im not sure whats wrong with me :-(
im confused

Hi Jonathon
I hope I dont add to your confusion but your symptoms do sound similar to me - with vestibular neuronitis/labyrinthitis. With VN you will only have occasional vertigo and usually its just at the start and lasts for seconds rather than minutes or hours.

Lots of things you have posted ring true for me - not able to concentrate for long, brain fog, off balance. I read your previous post and it sounds more like VN than ME or CFS to me. When I had VN at the start I had terrible fatigue which the dr said was post viral fatigue, but actually whenever I am feeling worse then I get really tired and I think its because the brain/body gets so tired dealing with the symptoms and trying to keep you balanced, so I think its part of the illness. And I used to be realy achy and couldn't walk far at all. When you say you don't think you are up to a trip to London, I would say the same thing exactly.

Hope that does help to clarify things a bit for you. Are you doing vestibular rehab exercises or anything to help improve your balance?

Best wishes
Tesss

i did have a course of about a month at hospital doing balance exercises, but it tired me out so much i gave up. I carried on at home with great advice from many peeps here - but it didnt seem to work. I did it for around 2 months, 3 times a day. Each exercise i did for a week. The only one that got me was the head circles exercise - i nearly collapsed doing that one - mayeb it is an ear prob then :-/

I too was very achy like Tesss, but mostly my neck and back and lots of fatigue. The more I'd push myself to do things the less tired I became. For i.e. if I'd walk a mile, I'd feel better afterwards physically, but my head would feel very tired and brainfog would really set in. So it seem to be all in my head.

My therapist told me she had CFS for 8 years and fully recovered. She said she was very tired and had an achy back and neck. She said her head tilted to one side and she begain seeing a chiropracter and taking vitamin supplements and herbal supplements. It is proven that if one sufferes from CFS that they should get up and exercise on a regular basis. It helps improve the immune system and helps with CFS. She also said to eat nutritionally.

Maybe you had a little bit of CFS set in with the ear problems. It sounds as if you never really recovered fully from your first bought of labs or vn. I agree with Tesss on this one especially since yours started from an ear infection just like mine. Perhaps you caught another virus and it is making your symptoms feel worse.

Take care,
Gloria

well i tried the whole graded exercise thingy, but i couldnt keep up with it, it made me feel too ill. Ive tried it twice now.

I seemed to get an ear infection in oct 03, and then a bad virus a month later that really knocked me for six for 3 weeks. Since that i have never recovered, and last Nov i seemed to be struck down with a virus that was very similar to the initial one, and then again last month which put me in hospital.

I have tried all the herbal remedies, vitamins, eating well etc - nothing has worked :-(

Hi Johnathan,

Odd, but I've not checked in for a long while, checked in today and saw an old name...

Sorry to hear you're not doing so great...

Technically, it is possible to get VN/Labs numerous times, though it's highly unlikely - as the chances of catching another virus which causes the same damage isn't common, and catching it 3 times in terms of probability is a little like a lottery win.

However, what is very common, is bouts of decompensation, after an inury to the balance system (which is what labs/vn is - and injury caused by a presumed virus (or bacteria)) the brain learns to adapt, this is called compensation (which can be a long drawnout process), and eventually the person can feel fine, but they will still have an injured vestibular system, just their brain has learn't to adapt to the damage and resulting mismatched. Even in those people who are fully compensated (and feel fine) the vestibular apparatus remains damaged (it cannot significantly repair itself), and from time to time they suffer decompensation, this occurs because the brains never "forgets" the old settings and sometimes slips back into the old way of doing things, and becomes less good at filtering out the erronous signals.

The sort of thing that can bring about decompensation, is exhaustion, physical or emotional stress, illness (colds/flu are the most common - it gets me everytime), periods of inactivaty, long holidays etc etc etc.

Not everyone will suffer with decompensation, and to most people it's just an annoying return of a few mild symptoms occasionally when overtired or suffering from a cold. However, for some it can be just as intense and as troublesome as when the original virus occured. It's not unheard of for people to suffer from labyrinthitis, and fully recover over a number of days/weeks, only to then several months later, after going through a period of extreme physical or emotional stress (for example having a baby, or a death in the family), and start with symptoms which seem more bothersome and persistant (though they are rarely more acutely severe), and this can take some time with treatment before they recover. In general the better and more complete the compensation process the less likely decompensation is to occur, so someone in your position (who never really compensated in the first place) is much more likely to have a set back (brought about through illness, stress or whatever)...

The good news is that with decompensation the recovery process is usually quicker than the first time around.

Of course, there could be other causes for your vertigo (btw I've yet to see any hard evidence which links vertigo (as opposed to lightheadedness) to CFS/ME, and none which links positive ENGs), in particular there are several conditions which do recurr, menieres or migraine for example, however they usually consist of distinct episodes (attacks) with symptom free periods.

Bearing in mind you've not done any Vestibular Rehab, and you've been held back by CFS (fatigue is common in vestibular disorders to BTW), it might be worth chasing up doing some VRT and seeing if it helps, as if decompensation is the issue it would improve things greatly...


Tess: To pickup on your comment, VN/Labs can cause vertigo long after the initial symptoms have passed, however it usually only occurs sponteanously at the very begining, but oftens happen later on as a motion/visually provoke symptom (vertigo is an hallucation of movement, and swishing our heads around and stopping gives most of us that feeling...;-)

Hi Johnathan,

Odd, but I've not checked in for a long while, checked in today and saw an old name...

Sorry to hear you're not doing so great...

Technically, it is possible to get VN/Labs numerous times, though it's highly unlikely - as the chances of catching another virus which causes the same damage isn't common, and catching it 3 times in terms of probability is a little like a lottery win.

However, what is very common, is bouts of decompensation, after an inury to the balance system (which is what labs/vn is - and injury caused by a presumed virus (or bacteria)) the brain learns to adapt, this is called compensation (which can be a long drawnout process), and eventually the person can feel fine, but they will still have an injured vestibular system, just their brain has learn't to adapt to the damage and resulting mismatched. Even in those people who are fully compensated (and feel fine) the vestibular apparatus remains damaged (it cannot significantly repair itself), and from time to time they suffer decompensation, this occurs because the brains never "forgets" the old settings and sometimes slips back into the old way of doing things, and becomes less good at filtering out the erronous signals.

The sort of thing that can bring about decompensation, is exhaustion, physical or emotional stress, illness (colds/flu are the most common - it gets me everytime), periods of inactivaty, long holidays etc etc etc.

Not everyone will suffer with decompensation, and to most people it's just an annoying return of a few mild symptoms occasionally when overtired or suffering from a cold. However, for some it can be just as intense and as troublesome as when the original virus occured. It's not unheard of for people to suffer from labyrinthitis, and fully recover over a number of days/weeks, only to then several months later, after going through a period of extreme physical or emotional stress (for example having a baby, or a death in the family), and start with symptoms which seem more bothersome and persistant (though they are rarely more acutely severe), and this can take some time with treatment before they recover. In general the better and more complete the compensation process the less likely decompensation is to occur, so someone in your position (who never really compensated in the first place) is much more likely to have a set back (brought about through illness, stress or whatever)...

The good news is that with decompensation the recovery process is usually quicker than the first time around.

Of course, there could be other causes for your vertigo (btw I've yet to see any hard evidence which links vertigo (as opposed to lightheadedness) to CFS/ME, and none which links positive ENGs), in particular there are several conditions which do recurr, menieres or migraine for example, however they usually consist of distinct episodes (attacks) with symptom free periods.

Bearing in mind you've not done any Vestibular Rehab, and you've been held back by CFS (fatigue is common in vestibular disorders to BTW), it might be worth chasing up doing some VRT and seeing if it helps, as if decompensation is the issue it would improve things greatly...


Tess: To pickup on your comment, VN/Labs can cause vertigo long after the initial symptoms have passed, however it usually only occurs sponteanously at the very begining, but oftens happen later on as a motion/visually provoke symptom (vertigo is an hallucation of movement, and swishing our heads around and stopping gives most of us that feeling...;-)


hey there

thanks for the reply

When i say i have had vertigo - its been the slighest of episodes - it may actually not be classed as vertigo and just dizziness? For example, sometimes im sat here at the PC, and ill feel whoozy and its kind of feels like i blacked out for 1 or 2 seconds, and my head kind of spins very slightly - but thats it.

I went to the post office yesterday, and once i stopped walking and stood at the counter the same happened, but it felt like my whole body was trying to move around to the left - especially my legs - it was very wierd. I wouldnt say it was vertigo though.

I did quite a lot yesterday, and today i am feeling the fatigue - brain fog / poor concentration and aching legs. Whether this is from M.E, anxiety, inner ear probs - i dont know. Maybe im just going crazy :-(

The initial virus started off when i was stressed out - working hard, crazy ex gf who caused me all kinds of problems, probably playing too much football (soccer for you in the USA!!) and not resting enough and partying hard.

I HAVE tried VRT - i did some at hospital but i was too tired to carry on with it and i didnt see any benefits from it. I decided to carry on at home, but again i had no benefits. Of course, i did it all on my own and so it was probably wrong.

Theres just so much conflicting evidence of what is wrong with me. I am seeing a therapist who thinks i have M.E, or had M.E which has left me with chronic anxiety and bad depression. I personally dont know what to think. All i know is that i am not the person i was 2 years ago, and i want to be. A 23 year old man shouldnt be house-bound 24/7, suffering from panic attacks, anxiety, and mental and physical fatigue. It doesnt make sense.

I would like to go to a specialist who can test me for inner ear prob's - although i have seen a few consultants already, people on these boards say that the hospital in London is the only place to go where they will do it right - and its a long way away from me.

J

PS another thing that makes me thing this is a balance disorder is that my eyes get soooo tired. They sting and get red easily. Plus i get a lot of visual disturbance - for example trying to focus at someones striped / chequered shirt makes my eyes go really weird and it troubles me to look at it - i cant focus on it properly. Another classic thing is standing in front of a washing line passing accross my field of view and trying to focus on that - on my god it makes me feel sick, my head goes all funny - does that sound similar to a balance problem? People with ME also get visual disturbance too though - so who knows :confused:

.........and when i wear my contact lenses instead of my glasses my symptoms seem to clear up a little????? I think i remember SUBS saying something a long time ago about that being a classic thing in people with ear prob's.

Hi,

it felt like my whole body was trying to move around to the left - especially my legs - it was very wierd. I wouldnt say it was vertigo though.

That is exactly what vertigo is.... an hallucincation of movement - ie you felt like you were moving when you weren't - in it's most extreme form it's violent spinning, but it doesn't have to be that severe and comes in milder forms.... There is no hard definition of what dizziness is.... What your describing is your body trying to fight to keep posture when your ears are telling your brain you're moving all over the place...



I HAVE tried VRT - i did some at hospital but i was too tired to carry on with it and i didnt see any benefits from it. I decided to carry on at home, but again i had no benefits. Of course, i did it all on my own and so it was probably wrong.

VRT can take a long while of persistant (and constantly changing) therapy before it really takes effect, and doing 30 mins of a generic course in hospital won't even scratch the surface. For what it's worth a number of studies have also shown the generic programs to only have limited effect (as opposed to the custom tailermade programs), and for most patients they are massive overdose (and make them too ill to feel the benefit), or aren't aimed specifically enough at the problem areas.... which is why a custom program with an experienced therapist is far better.

Theres just so much conflicting evidence of what is wrong with me. I am seeing a therapist who thinks i have M.E, or had M.E which has left me with chronic anxiety and bad depression.


These are also very common complaints with vestibular dysfunction (chronic anxiety in particular - as the vestibular apparatus is directly linked to the "flight or fight" mechanisms)

A 23 year old man shouldnt be house-bound 24/7, suffering from panic attacks, anxiety, and mental and physical fatigue. It doesnt make sense.

To put things into a bit of perspective for you, I was turned 23 when I started having vestibular troubles, and the first couple of years were the worst (to deal with), and I gradually did a lot better (unfortunately things back peddled a bit because of some other health issue I have), I'm 29 now (how time flies) so I can totally appreciate where you're comming from, and all I can tell you is it does get a lot easier, both in terms of physical symptoms and being better able to deal with it, and for most people they will recover a lot quicker.

I would like to go to a specialist who can test me for inner ear prob's - although i have seen a few consultants already, people on these boards say that the hospital in London is the only place to go where they will do it right - and its a long way away from me.

London is one of the best in the uk, however IMHO they are not as good as some outside the uk (in the US for example), there are also comprehensive balance programs at leicester, and addenbrookes (and I think southhamptom and manchester). I can't remember have you had the battery of inner ear tests?? But, yes, most ENTs are really out of their depth when dealing with longterm dizzy patients, so it's only worth going somewhere decent.

I travelled to london from devon (4.5 hours of hell on a train) but I made there and back, and although I felt pretty rough I managed it - take someone with you who can help is something goes wrong, afterall whats the worst that can happen?


Plus i get a lot of visual disturbance - for example trying to focus at someones striped / chequered shirt makes my eyes go really weird and it troubles me to look at it - i cant focus on it properly.

Which is very very very common in vestibular dysfunction...


Another classic thing is standing in front of a washing line passing accross my field of view and trying to focus on that - on my god it makes me feel sick, my head goes all funny - does that sound similar to a balance problem?

Again, very very common in those people who have become too reliant on their vision to balance, because their brains have started to ignore their faulty ears and just use their eyes to balance, it tends to make people off balance in the dark more too. This is something that can easily be addressed with VRT (infact I think it's one of the easiest to address).

..and when i wear my contact lenses instead of my glasses my symptoms seem to clear up a little?????

Again, very common, thats because the wearing glasses requires a different response from your visual system (because of refractiveness in the lenses) and means the VOR (vestibular-ocular-reflex) has to learn to work differently, which means that your already-overworked-with-dizziness brain has one more thing to try and deal with, and that one of it's core building blokes (vision) is impaired...

I really can't comment on what you've got, as I know little about ME/CFS (which I don't think is an easy diagnosis anyway?), and it may be that you have more than one problem (ie both CFS and VN) all exaserberating each other. However, I do know that a number of the things you mentioned can be linked to vestibular dysfunction, and the best treatment available for any stable vestibular disorder is VRT, and even if your symptoms aren't comming from vestibular dysfunction then VRT could help whatever is causing them (because it's aimed at improving your symptoms by allowing you brain to adjust and adapt). So it might be worth a try...

wow, thanks for that :-)

I have had one of the standard balance tests (ENG???) but nothing showed up. I only had VRT because i insisted that i try it.

I am around 5- 6 hrs away from London, and i am having really bad anxiety and panic attacks since being in hospital last month - so the worst that could happen going to London is i'd probably have a bad panic attack :-(
I've become quite agrophobic, and i get anxious even indoors at times. It sucks. I am close to Manchester so that would be easy for me to get to. I have seen a consultant ENT specialist guy - he said that i dont have a balance issue and thats it some kind of viral illness. He sent me to a neurologist who said i dont have CFS, and that was it - i didnt see them again. I then saw another specialist who said i did have CFS.

What is the fight or flight theory - is it bascially you either fight the symptoms of anxiety (fight) - or let it control you and be scared of it? (flight). Whats the best way to fight the symptoms of anxiety - i usually just try to distract myself - but its there all the time - its really bad at the moment. Worst than its ever been.

Jonathan -- Fight or Flight is your body's primitive response to danger. This is what we basically call anxiety...... Its actually your body's way of telling you that there is danger about, and anxiety helps you combat that.... it increases your perception, speed, etc.... Unfortunately in many cases today, the body;s response is to minor things that really shouldnt be causing anxiety/... The individual gets over sensitized to everything, which triggers wave upon wave of anxiety;...


Hope that hepled.

yep sounds familiar, i get agitated and anxious about anything and everything at the moment - im always on edge. i keep hyperventilating too its damn annoying - i cant even figure out why im doing it

Jonathan:

To add to what tummy said. The "fight or flight" response is just a euphenism for the brains thought processes when relating to anxiety. When our ancient ancestors were confronted with danger, a lion for example, there are two ways of dealing with the situation (three if count being eaten;-), either fighting the danger or running away (flight), both of which were better achieved if we had large amounts of addrenaline in our system, so we evolved so that when confonted with danger adrenaline (and neuroadrenaline) kicks in and chemicals are released to increase our physical strength, and to heighten our senses and make us more alert to enable us to quickly get out of the dangerous situation - either fight or flight, we also evolved to make us assess that danger and think of ways to deal with it (ie your brain start working and nervy). Now roll on thousands of years to today, we still have the same mechanisms built into our bodies (as a leftover from our ancestorary), but we don't often encounter lions, instead modern day dangers (and stress) come in the form of everyday events (stress at work, money troubles, health troubles etc), but our bodies deal with that in same way as our ancestors dealt with the lions - by releasing adrenaline and other chemicals to help us deal with the situation, the problem is that often being full of adrenaline and stressed out doesn't help us deal with everyday problems (infact it usually makes things worse), and whats worse is that a lot of modern troubles are out of our control, so we're sat there full of adrenaline getting more and more stressed about a problem we can't resolve, which turns into a vicious circle and gets worse until a panic attack results.... The bodies fight or flight response is the adrenaline and other chemicals being released to help you deal with the "apparent" danger...

In relation to vestibular problems, some scientists have found there is direct link between the vestibular apparatus and the fight or flight mechanism, and that having vestibular dysfunction sets off some sort of automic nervous system response which kicks in the fight or flight response, which makes sense really in that if your brain is getting faulty (and conflicting) signals from your ears then it thinks you're either falling, or that somethings very wrong with the world, so unsuprisingly these are both hard-wired to result in a "red alert" type response in your brain - and fire the fight or flight response. Unfortunately as anxiety is a vicious circle (the more anxious you get the more adrenaline is released), then it's not surprising that this underlying brain response results in anxiety and panic - whats more is that when you are suffering from anxiety or panic your brain becomes less good at supressing the faulty vestibular signals (ie temporarily "decompensates" and coincidently slows down the overall compensation process) so that makes you feel physically worse, which then feeds more into the anxiety, and whole thing goes around circles... added to this there is also the fear of "what can be wrong with me", which only compounds the situation...

Which is why it's very common to have anxiety/panic with inner ear problems...

The best treatment for anxiety/panic is probably cognitive behavioural therapy (CBT) - especially in relation to vestibular problems, as this can arm you with tools and techniques to "disarm" the anxiety before it gets to be a problem and helps break the cycle. Infact it's become quite routine to offer, CBT in conjunction with VRT, as anxiety and panic are considered the main reasons why people fail to compensate, and once thats brought under control then VRT becomes much more effective. There aren't too many CBT with vestibular knowledge in this country, but there are a few and London employees one of the leading experts.....

I had CBT for a period of time - and it helped me dramatically (and there were times, particularly early on, when I was scared to leave the house, and for a very long time wouldn't go to far on my own), the guy I was seeing didn't have any vestibular knowledge (I did see the guy in london once), so he found it hard to relate to my problems, but he helped me improve.... and taught me to question things - which is why I said about going to london, whats the worst that can happen? and you replied "a panic attack" which is what I thought you'd say, and while it's certainly unpleasant, it won't kill you, and you'll recover from it and probably isn't as bad as you think it might be...these are all things CBT helps you ask and gets you to deal with...

AS for the ENG, I've said this a million times on this noticeboard, 60% of ENGs are normal in patients with well documented vestibular problems (it only tests part of the ear, and is only a compartive test (ie it compares one side to the other), and only test quanitity of signal not quality, and is fairly inaccurate (especially if poorly performed)), I've posted lots of quotes and links, and better explanation in the past about this, do a search through some of my old posts. Unfortunately, most ENTs will send you for an eng, if the results are normal they will say it's not inner and refer you to a neurologist, who won't have a clue what to do with you, this is because standard ENTs are way out of their depth (they spend little more than a day or two on the vestibular system at college), you really need to see a neuro-otologist (who are experts in the inner ear and it's connections to the brain).

I've not read or been told something in the past 2 years which makes as much sense as the above. Reading that has answered a lot of questions for me.

I have had CBT before, but it was CBT based on CFS, and so it wasn't fine tuned in anyway to vesibular problems.

I think i just need to go and see a neuro-otologist and get this off my mind once and for all. Even if they turn around and say its not an inner problem, then it would take a lot off my mind.

I did have an appointment with one of the top Prof's in London, damn i wish i had gone now. Im sure i can persaude my GP to refer me again........yeah right.

Hi
Just wanted to agree that this does make a lot of sense and the information is very clear and easy to understand so thank you Bennie.

Bennie you also answered a question I had about whether vertigo would happen spontaneously - I have had labs for about 11 months and have had few episodes of true vertigo.
However Jonathon, like you I have also had small 'spins' as you described, where I might be at my computer and look round and everything goes blank and wierd for a short period of time, or out in a shop and the same thing happens. Everything you describe in terms of the vision stuff - patterns on peoples shirt, or even just trying to concentrate on a persons face in a face to face conversation can make me feel very odd. I work in an open plan office and often will be having a conversation with someone at a different height - they may be standing or sitting on my desk and I will be on my chair, and that is uncomfortable - the lighting is horrible in our office and seems to cause more difficulty. I get the red and dry eyes too!
I have no doubt that I have a vestibular disorder as I have no symptoms of ME or CFS, and I do think that whatever else is going on for you that you do have a vestibular disorder. I have had the tests - eng and caloric - and they came out negative, but luckily the ENT I have seen seems to be quite up on vestibular disorders and referred me for vrt based on my history. I really hope that helps - I just can't help commenting as what you say really rings loads of bells all over the place for me.

You could always try to just call the hospital and explain you had an appointment that you were unable to make and they just reschedule you. Let us know how you get on and I really hope that you get some good help.
Best wishes
Tesss

You could always try to just call the hospital and explain you had an appointment that you were unable to make and they just reschedule you. Let us know how you get on and I really hope that you get some good help.
Best wishes
Tesss

yeah its worth a shot, but it was over a year ago now!!!

Hi Benny
Just a quick question following on from the comments about contact lenses. I had new glasses in the summer which caused huge decomensation - not a fun time! I realise now that new glasses wasn't a good thing to do, and I have shied away from contact lenses as I thought I might get the same decompensation. So are you saying that actually switching to contact lenses would be a better idea than wearing glasses anyway? Since I had labs I have always worn the same glasses (apart from when I tried the new glasses)
.
Best wishes


[QUOTE=BennyGibb]Hi,


Again, very common, thats because the wearing glasses requires a different response from your visual system (because of refractiveness in the lenses) and means the VOR (vestibular-ocular-reflex) has to learn to work differently, which means that your already-overworked-with-dizziness brain has one more thing to try and deal with, and that one of it's core building blokes (vision) is impaired...

Hi Tesss,

I thought I'd throw my two cents in since we have similar vision problems. I've worn contacts for 20 years. I would wear my contacts all day and use my glasses at night. Since my eye problems started, I feel worse and see worse when I wear my contacts. I get that tired feeling and pressure in the forehead and eye area and feel my vision isn't as clear with the contacts.

Before the illness, I always wore my contacts because I always felt my vision was much better with them, but it has been the opposite for me. Just thought I'd let you know since my experience with contacts has been different than what has been said on this post.

Hope you are doing well. I've been trying not to come on these boards too much this week and trying to keep my mind busy with other things.

Take care,
Gloria