Should I be worried?!

That's just what I needed to hear! Thank you  

Have you had any of the scans or been to ENT?

I saw people saying about MRI scans which is very scary! I was just praying it would go away before I had to think about any of that..

My ears haven't been sore at all either which seems weird to me, but my head just feels like it weighs a ton and my eyes are constantly heavy. 

I've been referred to ENT but delightfully I love in Wales and won't be seen until at least January! I've paid to see a private neuro physio and am doing VRT exercises to try to help. 

The recovery from this doesn't seem to be at all linear, I think I'm getting there, then feel awful again. It's so frustrating. It's comforting to know there are others who know how you feel tho! The fatigue for me is really bad, I've had to defer a year of university and give up my job for now. I'm also a single mum to 4 children so it's hard going at times. 

No one can say how long it will take to get better, but you will get better and the bad days get less and less xxx

I completely know what you mean about the alcohol! At 23 my friends are often going out, and one small drink can make my vision horrendous and make me feel like I've had a bottle. I know it's not good but on occasions I've "drank through it" and after a few glasses of wine you stop feeling quite so dizzy and feel more happily tipsy! I feel like stopping drinking all together would just be letting it win, although I do only drink on occasions, maybe twice a month. 

Thank you for what you said about the tablets, I have since stopped taking them! 

Yesterday was a good day, managing to work from 8.30am until late without feeling too bad, however I did then sleep for around 11 hours!

"I've "drank through it" and after a few glasses of wine you stop feeling quite so dizzy and feel more happily tipsy!"

That is such an interesting statement and one I totally agree with and also applies to me which leads me to question if I am so unrelaxed, on edge and stressed, is it these things that exasbertate the dizziness?

 

Yes! One glass makes me feel completely awful and all over the place. However by 2 or 3, it almost helps me out!

I feel slightly drunk constantly anyway with my dizziness, but at least after the drinks it's actually a nice feeling!! 

My gp did do the tests on my eyes and said I wasn't showing the common signs and was able to follow her finger well etc. this was what made her think I didn't have labrynthitis at all!

I only travelled to turkey from gatwick and it was fine. Although to be honest my ears have given me no ache or pain throughout this whole thing, unlike most other people! So this is probably why I was able to fly without a problem.

My gp has said to not let it stop me going on holiday.....I too haven't had any pain or seemingly any other ear type symptoms....usually get pain from pressure upon landing so perhaps I'll be ok aswell....

Call me sceptical but your GP has been briefed not to send every Tom, Dick & Harry to a specialist in the same way your doctor's receptionist are briefed to vet the reason for your doctors appointment. It call costs Money and the ENT is at the top of the pay scale !! If you are still feeling dizzy after 8 weeks then insist you are refered to ENT. Unless you tell me otherwise, your GP is not a specialist in Vestibular disorders. Of course you can follow her finger, there is nothing wrong with your eyes is there? (apart from being shortsighted)..lol

My guess is that you'll be diagnosed with Vestibular Neuronitis becuase you don't get the usual aches and pains or ringing assosiated with Labrynthitis and you exhibit the same symtoms as me.

I wouldn't expect flying to affect you because you are in a pressurised cabin travelling at 550mph at 36,000 feet. When you look out of the window towards the ground, everything seems to move at a snails pace. If you were travelling at this speed at ground level, then I think you'd know it !! :-)

 

Hiya Darren How you doing?ive not been on this thread for a bit  have wondered how you were going and few others.Did you go visit your brother? Gill and I keep in contact via EMail,I'm looking into Thyroid as didn't know you get tinnitus / balance with that.Now'ts changed in my corner  still the same.never wants to give up,and go back to normal.

    You still managing to work,how did your old glasses work out,still wearing them ,and how's the driving ? Lot more coming out with this balance / giddy since I was last on site new names added.  Let's know how things are with you know.Mar 

Yes it definitely feels like I can't remember not having it and I can't see a time where I'm going to be able to go for a run and not feel completely awful after!

What you said makes sense about it being a vestibular issue - something I need to research as I know nothing about it. Labrynthitis never quite added up as I really have had no problems with my ears. They haven't hurt or been very sensitive and I manged to fly e

Sorry I managed to send that before I was ready! 

I flew without any problems to the ears etc. 

the GP also did tests where I followed her pen and she looked at how my eyes were reacting, saying that I did this without any problems so she didn't think it could be labrynthitis! 

Who knows - hopefully soon I will have some answers! 

Hello Marlene

I am fine, pretty much the same, but fine haha, Yes I did see my brother and his family in Malta and we had a lovely time and I totally relaxed. To be honest I started to feel better in myself. For one week I left my old life at home and I reckon that if I stayed there for a few months that could be the medication I need,

Yeah I am still wearing my old glasses, they seem to calm/ soothe my eyes. Driving is OK, if I just potter around. My wife will do the motorway driving these days which suits me.

Theres just 2 things I'd like to fix and it's these.

1) Standing a queues, without swaying

2) Being able to walk around a supermarket or PC World or B&Q without feeling peculier.

That's me.....How are you Marlene?

Really glad your holiday gave you some respite from it,yea that B.....y standing is the pits to put up with,where at one time I used a shops basket I always use a small trolley,so were still both the same,I'm in and out of my local supermarket,stick to same one know where every thing is,pits if they change anything in the isles,that really throws me,damn annoying hey,to us that is.My ears are high hissing today ,my balance off the wall,same happens when they go low. When hissing centred feel lot better,then I can ignore ear noise,to some degree.Right Royal Pain all round.

    Glad the specks still helping,stick to them gives you calming ,so got to be good .

 You may have hit on your Malta trip doing you good,weather much better out there .wondered how if any that flight may have affected you,so that turned out fine glad of that for you .nice to see family,bet had some well into the night chats.Just what the dr ordered . I've not been to dr since back in Feb,but will go ask now for my thyroid to again be looked at for a 2 nd time.

  What's the answer? I've not a clue.Good job your Mrs drives long distance,you then can at least sit and close your eyes ,do you still get that passing of cars going ?im like you ,only still small short travel in car,but I'm okay car wise,just the anxiety creeps up with the fullness in ears .

 Lovely to chat  you take good care

Hi Darren, glad you had a nice time and felt better. I'm improved lately but the supermarket is still a trigger for me,  feel like everything starts going a bit weird, as you say 'peculiar', my eyes start going out of focus  and i start bumping into things, losing my co-ordination and spatial awareness, but i am learning to keep calm and carry on and try not to focus on it but try to walk almost stride through it with determination that it will not get out of control and not think about it. I think having to keep turning corners and looking at rows and rows of things, stopping and startng, moving to one side to keep out of the way of oncoming trolleys etc., reaching to get something off and shelf and bending is the trigger.

If i have reach above my head and put my head back that is a big trigger and my neck and spine feel out of whack and i start feeling wobbly.

  I no longer feel able to drive long distances and my husband does a lot more driving me around now even though i am a back seat driver i now try to keep quiet because i can't do it myself anymore and appreciate his help. I especially have to reverse very slowly because turning my neck and looking from either side affects my vision.

It's hard to explain the weird, peculiarness of it all in supermarkets, wish i could be a bit more articulate about it all but understand what you are saying.

I do think my problem is not so much located in my ears but in my neck and spine but hey it's anybodys guess really.

 

The flight was alright Marlene. Once you are up in the air you are so high you don't get visual over load associated with speed you would get if you were traveling fast on the ground. That said your senses are go all wobbly during take off and the plane is banking this way and that to point it in the right direction but after that its fine.

The only thing I don't like as I said before is all the queuing that comes with it, check in, customs and so on hahha.

The car thing is weird. The two sensations I get are

1) If I am following a car speed for speed on say a fast motorway and there isn't a lot of trees, road furniture, I almost go in to trance (probably not the right word but I can't think of another one), it's almost like my brain thinks becuse everything is "samey" I am no longer moving and neither is the car in front. That's why these days I will only opt for the B Roads and lanes so my eyes are seeing variation and has something to anchor on to like trees and pushes. As soon as the road opens out like you are on an arrow straight road with no trees or bushes, just identical looking fields either side, I feel completely unachored.

2) Have you ever been stopped at the traffic lights with your handbrake firmly on and the car to your right (or left) creeps forward and then you get that overwhelming feeling/ adrenalin rush because you thought you we're rolling backwards? I get that quite a bit hahaha

Do you think it's your thyroid that's the root of your problems Marlene?

Hello Anne

I am so with you on this one. This supermarket thing is so peculiar, it is so difficult to explain to doctors how you feel and this does go hand in hand with the driving issues we have.

I used to drive for miles and miles, I've been driving for many years and I would drive anywhere. Cars vans, lorries and nothing would phase me. Now I feel so dependant on my wife for these long trips it makes me angry with myself. My wife is great but I know she doesn't get it !!

My ears don't hurt either Ann, but my neck does and so do my shoulders. I did see a chiropractor for a few weeks but that didn't help

Hi Darren

Driving never really phased me either until this condition but i do still drive as i am a community nurse, so i have to, but recently i have been asked to visit someone much further afield from my catchment area  where i haven't been before and i have asked one of my colleagues to take me cos' i'm concerned about the safety aspect of my driving outside my comfort zone. Work have been quite good about it and told me to work within my limitatiions for driving so i had to ask with a hand on this particular trip.  Sometimes i feel as though the cars are whizzing past me and too closely to me and i'm unsure if i can make it through gaps  because i feel i have lost my perception of the space around me, so therefore, i take everything very carefully and i think it is only because i have been driving many years that i can rely on my own sense of judgement that i am still safe enough to drive.  I don't take any chances and always take things really slowly when driving through gaps, which i probably have always done anyway but i think i am relying on my experience as a reasonably good driver to get me through when my vision is particularly 'off'.  I would hate to lose my licence as i need it for my job but the consultant told me to try and carry on as 'normal'.

I know that i have BPPV and that is caused by my left ear, but i think this other thing is also related to my neck stiffness and spine as it all started after a physio did some crunches on my spine because of the problems with the neck stiffness.  My neck clicks so loudly sometimes. I just hope with time it will sort itself as i think the physio injured me somehow, trapped a nerve, misaligned my spine or something.   I mentioned this to the ENT consultant that i paid to see privately as it was taking so long to be seen on the NHS and he didn't think so but i read that this problem can also be caused by neck and spine problems.  The MRI showed that i have a very prominent bone in my neck and i think this has something to do with it. The radiolgist who x rayed my neck years ago said 'you've got a problem there'. Whether or not it does, whether i am right or wrong, all i know is i'm stuck with it for the moment and just hope it will improve with time. When my vision comes and goes it reminds me of that saying 'you're back in the room' when it rights itself and everything refocuses.

I know that i hold all my tension in my neck and shoulders and been told to try and relax them so i have tried to adapt my posture and drop my shoulders but quite frankly i am at a loss as to what else i can do to help myself, having quit smoking, become vegetarian and cut out the foods on the MAV diet, there is very little left for me to eat.  I am giving it all a go  cos' i don't drink alcohol either so there's nothing else i can give up. One doctor  told me to just 'chill out' 

I think most of the ENT regarding this condition are just stumbling about in the dark cos' they really don't know what the causes are either.

I have read up so much on it now and they are even saying on some research websites they don't really know the cause of BPPV or whether it is to do with crystals in the ear canals or not but at least i know about BPPV and mine is much better at the moment.

I do know that flying does affect my ears so everyone is really different in particular triggers.   I also had a head inury 18 years ago that left me with permanent tinnitus and partial deafness in my left ear in which i now have the bppv. one ENT said they also think this may be the cause and i have probably had the condition for many years but have never taken any notice of it until it got this bad but then the next doctor at ENT said this wasn't the cause. Who knows. I am due to go back in a few weeks to get the results from the balance test i had done last week. If they don't come up with anything i think i will pursue a different route and go with neck spine thing and see an osteopath or similar to focus more on my neck and spine to see if that helps.

 

http://www.menieres.org.uk/information-and-support/the-balance-system

found this article really helpful as it bout sums up the driving/supermarket problems.

 

Hi Darren, Just found this article also, I wear varifocals, so might help if i get single lenses just for driving.

'When you put on glasses, the size of your visual world changes (getting bigger or smaller depending on whether you are far or near sighted), and your brain has to recalculate the ratio between the amount of head movement and the amount of eye movement. This is why sometimes you might have trouble adjusting to new glasses.The problem for the brain is fairly simple if the lenses have only one optical power. If you wear bifocals, the brain has to use two ratios, one for the top of the glasses and another for the bottom because of the different portions of the lenses. It also has to switch ratios back and forth rapidly as you look through the tops or bottoms. This problem is more complex with trifocals and progressive addition lenses. With progressives, gradual change in optical magnification occurs as you look from the middle of the lens to the reading area. This means that your brain must change the VOR ratio constantly as you look up and down through the lens. This extra work is not fun for an already overloaded brain. In addition, the progressives have zones of distortion in the lower corner of the lenses; the distortions make the brain work even harder.

Many people also have significant troubles with bifocal contact lenses because these lenses project multiple images (different images for different distances) on the retina of the eye, and the brain must sort out which image to use. This takes practice and a fair amount of brain power, which is difficult for many with vestibular disorders.

Clear vision is dependent upon a normal functioning vestibular system. Because vision is linked to the vestibular system, people with vestibular disorders have special needs when selecting glasses. Discussion of these needs with your optician may help you avoid problems when you use glasses'.

My oh my Darren  knew you had it bad,but how scary is what you experience,,knew we spoke about your working down as far as the West Country,can see why you would take the back roads,I've said in the past don't know how you do it,you were doing work from home ,is that still on.? 

   I can visualise what your saying to the traffic situation ,when ones got this don't take much to understanding it all ,just thank God I've not experienced it..The hand break another weird one for you Darren,what makes eyes and brain fix on it,as to the movement .Got to be others out there with it. Just got to be.I know you've done your homework on it,always said your switched on to it all,think I can include Gill on that.Mine is still the walking  swaying or rocking feeling ,remember way back I said I thought mine was hormones  something to do with it ,so I'm still in that thought,gut or intuition makes me still think it,you been anywhere,or spoke to anyone since last spoke ? Again have wondered.Think maybe can be thyroid Darren  even though it showed up Neg few yrs back,had yours checked ?thyroid can do the balance,say it takes couple of test for you to get a result,thyroid probs in my family ,is it a gene thing ? Only one way to find out,may try and see that Maxi surgeon from last yrs neck tumour I had removed,he said to get back to him with any problems.Not seen Denny on site,heard how she is Darren?

 We're get there in the end I'm still on that US site  there's some on there like you brainy.God Bless to young to let this get better of you,now your on site will keep looking for your post .

Good write up Anne,interesting read.ENT haven't a clue how to fix this  and far to many of us now complaining of this ,veterans coming back from Iraq,and Afghanistan are now saying about Balance and Tinnitus ,US government now putting money into it due to the numbers.Does need cash or donations,maybe start seeing a push into solving these issues,1 in every 10 people have our issues ,no small number by any means.BTA need to push the ad they made  short while ago with actor Larry Lamb.Balance / tinnitus go hand in hand,which ever it's a major problem. Like what's been said today.where all this ends is anyone's guess,like Darren you need to work.and driving is part of your jobs.difficult as you say.

Hi Marlene

yes there's definately a lot of it about.  I hear from colleagues and people i meet how they have it or someone they know has.

Whatever the cause whether infection or injury and no doubt the soldiers have been injured and endured noise levels that create tinnitus there is a long way to go to a better understanding.

 

Thanks for sharing the article Anne....makes sense to me. I too would find it  more convenient to wear varifocals but I daren't...lol .. I'd love it if my optician said "Of course Darren for these glasses to be successful you need a normal functional vestibular system, how is your vestibular system today?" Wouldn't that be great hahaha??

Hi Darren, thanks for making me laugh, i will make sure that when i go for my next eye test that i make them fully aware that any glasses they prescribe in future must take this into account and i will not get varifocals again because i didn't realise they might be part of the problem until recently.  No wonder everything was wobbling about all over the place. I'd previously got on well with varifocals but now i'm aware i feel more positive that at least i'm learning more ways to help myself. Every little helps

Yes it does.....thanks Anne !!

Hi Anne,hope your on site,need medical question hope you can help with,here goes I'm sat nursing a frozen shoulder,from lifting something heavy 3weeks ago  carried on using the arm gingerly,but really sore.cant get to see osteopath till tomorrow.

  Now do I just ice it,or just heat it,at present sat with frozen peas,any advice be glad of,top of arm is hot .thanks Anne.

Hi Marlene

sorry to hear you've injured yourself.  Don't know to be honest, we use ice for swelling but not expert in this area, i use heat for my stiff neck and anti-inflammatory meds when i remember. My tendency would be towards ice for any swelling and heat to relieve stiffness, so it depends.

Hope the osteopath will be able to help you tomorrow and you recover quickly and try to remember to avoid lifting anything heavy again.  I never remember this advice.

Thanks Anne,so I've got the peas on,for the heat,as day goes on it stiffens up ,so I will heat it,Hurts to move it think that's why it tightens more.Thought it would have eased by now 3 weeks in,thought it had. Then brushed up outside my bungalow last Sunday ,then Monday came back with avengeance,never learn.My friend in Essex phoned on Friday,blow me if she's not sat with frozen shoulder,but can't remember how she done it.

   Nursing you tend to suffer back trouble,one nurse I knew had to give up her back was so bad,from lifting patients,and some were heavy she said.

  How you doing today ?wish you could get help,out there every day ,how do you cope I truly don't know.Got to be answer from somewhere,even thought to looking at another thyroid check.like you at a complete loss how to fix what's gone wrong. Thanks again Anne Big hug for advice .

You're most welcome Marlene.  Similarly I have a lot of stiffness/discomfort in my upper arms lately, feels like the bones ache whenever i lift my arms up or lie on them in bed.  I'm going to ask for my bloods to be checked out again as have a Vit D3 deficiency already and also would like B12 checked.  My colleagues at work and I seem to have enough ailments to keep 29 doctors in full time employment.  I haven't been right since the menopause I worked 25 years on the wards and the latter 8 years in elderly care and it is back breaking with all the moving and handling and have in the past 2 years been working in the community and compared to the wards i'm not complaining.  I love my job and all the patients i have met over the years but none of us are getting any younger so i had to leave the wards cos' it was either that or collapse on the job with my back regularly seizing up.  It was such a relief to get my job in the community and then i go and get this vertigo nonsense.  A part of me has to laugh.  Keep calm, carry on Marlene

Ah bless your heart,think nurses more important than Drs,but don't get the credit due them,When I lost over 4 stone in weight over 4 months  it was a nurse who told me to get Metatone ,as i.couldnt put weight back on,she was concerned  told me it was given to long term convalescent patients,no dr had told me ,a nurse took the interest,always grateful to her,took 1 and 1/2 bottles,but it got my weight back up,she said my illness had taken all my nutrients,hence muscle wastage.,plus any fat to store it.So nurses get my confidence everytime .trust.

    NHS expect you to do all the heavy work for there patients don't see them doing any of it hey,and they earn the big bucks Di.nurses pay is a pittance by comparasome,they rely on job dedication ,as you say you love your job.

    Didn't mean to smile when you say you and others could keep 29 Drs going with ailments alone ,sad hey. Wish you and us with this could get straightened,miserable days for those who work.

 You've done fair bit in your career,nice to look back on.

   Friend of mine got this theory as to balance  bit off the wall  but here's her on it,she reckons the earth is off alignment,she thinks some people more in tune with it,she's into this thinking in a big way,talks about lay lines to.im not sure,but I listen to what she thinks.Never know she could be right end of day,who am I to disagree,I who knows zilch .God bless hope your week goes better.go easy.X

Marlene your friend has a theory which i will at least consider and made me smile, who knows. God Bless you too and speedy recovery to us all.xx