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zoviet1 03-01-2004 08:53 PM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Hi guys, i posted about some of my symptoms on johns other thread. for some reason my old username and pass didnt work so i created a new one. some of my symptoms are those below

-"scattered" vision, jumpy vision, difficulty focusing sometimes
-Vertigo, but NOT spinning around, more of an imbalance. Often the sensation of falling backwards. neck sometimes hurts and back of head
-pressure above and behind my eyes
-sometimes i feel like there is pressure inside my forehead and i get really confused, when it passes im really really tired
-hot showers and baths always make my symptoms worse
-sometimes wake up with numb hand
-sensitivity to light

working on the computer makes my vision worse, as does florescent lights. Would blood work show any abnormal signs if you had a viral problem? my bloodwork is always tip top. I dont understand whats going on im so confused. I often get in the can and drive around cause movement makes my dizziness go away. but walking makes it worse. its weird.

sincerely,
Daniel

jonp 03-02-2004 02:04 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
well as i said i felt NORMAL yesterday, i went shopping with my dad last night and wow it all hit me as soon as i got into Sainbury's. I felt like i was floating down each isle, my dad was asking what we needed and i couldnt even speak to him. I kept pushing the trolley into things, my brain just was not functioning right! I got a grip of myself and controlled the anxiety but i still felt bloody awful. I nearly fell over a few times. I hate this illness. It only seems to come the worst when i go out into places where this is a lot of information for your system to cope with. WHAT THE HELL IS GOING ON HERE!! sorry i have no patience when it comes to being ill. I want to be better straight away, im just so used to being active and getting out of the house all the time.

hbep 03-02-2004 02:52 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
It only seems to come the worst when i go out into places where this is a lot of information for your system to cope with. WHAT THE HELL IS GOING ON HERE!!

Well, it seems you're spot on. It's very typical with a vestibular disorder to have problems in busy places, especially shops because of the aisles. When your vestibular nerve is either inflamed or damaged, the brain shifts its focus to your eyes for balance. When you are taking in a lot of visual info, particularly if you chuck in peripheral info, namely aisles, your symptoms often increase. A good vestibular rehab programme can help sort this out, as will exposure to visually stimulating environments, it's important you don't avoid them entirely. With regard to looking up the Cawthorne Cooksey exercises, go easy - people are not advised to do a whole lot at once. Little and often is the key, probably concentrating on one exercise at a time, doing approximately 15 reps of each exercise 3 times, 4 times a day. You don't want to over load your brain with info, this is counter productive. Great that your confidence is growing, it's important not to be subsumed by anxiety and stop doing things.

I know it's frustrating, but I'm afraid you're going to need the patience of a saint to get through this. It will go, you are already showing signs of improving, but I'm afraid it's often a few steps forward, then back. Recovery is not linear, this is normal also. The brain starts to adapt, but then gets thrown off by something else. We all get very angry, I know I've wanted to throw things through windows at times, but I'm afraid it gets you nowhere and can be very counter productive - leading to total frustration then depression - been there, done that. Try using the anger productively - as corny as it sounds, an I will beat this thing, it won't beat me philosophy can really help you. Hang in there, you will get there.

best,

hbep

lizzy33 03-02-2004 04:25 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Hi Jonathan,

I agree, shops really are a nightmare - have a look at a previous thread "Whats the problem with shops?".

I have been dealing with this since October03 (not long compared to many) and am TONS better but I'm still not 100% in shops. What I do is make myself go in them, even if I dont need anything and they are slowly becoming less of a problem - not right but better.

Chin up and keep with it, sounds like you're doing really well. However you do need the patience of a saint with this, I am usually sooo impatient like you but if this thing has taught me something... it's patience!!

Fear not, you will get your life back, I'm doing things now I wouldnt even have contemplated in December - keep active!


Lizzy x

Emsybobs 03-02-2004 09:21 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Jonathan.

Remember you really havent had this long in terms of Labyrinthitis. You said about us whove had it a long time having Menieres. No, menieres is very different. You will find it hard to grasp at the mo as I did at the start, but many people have Lab for a long time - it does not mean its menieres.

Glad you seemed to be making improvement. I had no improvement for about 9 mths so this is positive that you have seen some. Good luck with your referral.

Daniel - also get your symptoms and also often go for a drive to escape the dizziness...yet walking as you say makes it so much worse.

xxx

jonp 03-03-2004 01:57 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
hi guys,

well i went to the neurologist, who stuck to his guns im afraid. AS soon as i walked in he said 'oh you've brought Dad with you'. I thought what is he trying to say, yeah im 21 but i need some support. gees. i felt like saying have you ever been this ill? Do you know what it is like? if his kid was ill i bet he would be there too. anyway that annoyed me a bit :-)

He did his checks etc and i told a little white lie about one of friends mum having VL and she had all the same sypmtoms as me (which was a lie i just found out what was going on here on this post but i didnt want to mention the internet). He said no no its not that, you would experience the spinning senations (vertigo) , and you wouldnt be able to move off your bed? What? Thats not true!!!!

I tried to battle it further by saying my friends mum also had NO vertigo, but had VL and was diagnosed with it, and got a training programme to make her better. I mentioned neurtologists, and he said there was no need as i could go and see the ENT guy i had seen before for some balance retraining. What do i do now? I told him about the anxiety and panic attacks when i go out, and he just said try to breathe normally or count to 10, and then he changed the subject and started talking about ME (chronic fatigue syndrome!!! He said oh you dont have that by the way - but he has made me bloody paranoid now as he said people with that dont want to go out and have an aching feeling in their muscles, and i said to him - yes i do feel like that, and he said yes but you dont have ME. Thanks for the reassurance or what!! I know the fear of going out, anxiety, depression, fatigue etc is due to this inner ear problem, so not to worry about anything else there. Its a good job i do know that, otherwise i would of been very worried coming out of his consultation thinking have i got ME? Its a joke.

so anyway he has made me an appointment to see the ENT again, and has offered to give me some medication to control the anxiety (i know these are anti-depressants) and i dont want to take them at all, so i dont think i am. I think im just gonna battle it out on my own. Is that a good thing? Ive heard about people getting addicted to them for years, feeling worst after taking them etc.

Now i have to let my boss know, who will of course be getting a little worried now. Im gonna lose my job soon, they cant wait forever.

Like someone said its a waiting game, being passed around from here to there, while you have to suffer in the meantime. Im gonna print this document out :

[url]http://www.opt.pacificu.***/ce/catalog/COPE7282/Dizzy.html[/url]

highlight the things i am feeling and take it with me to my next consultation. Then ill say the same things about VL, fatigue, anxiety etc and if he says its nothing to do with your ear, ill say yes it is - - look. Then he will probably say oh is that off the interenet? Yeah so what? It knows more than you!!!

Arghhhhhh i am going mad here. I really need to see someone who KNOWS what this is and knows what it is like before i get more and more depressed. I went out yesterday and i was fine in the village ( well things were weird but i could deal with it),then i drove to Burnley, and my friend got his hair cut. Whilst i was waiting it happened - got a bit of dizziness, then for no reason the panic and worry etc kicked in and it made it ten times worst. Walking back to the car i was so weak at the legs i just felt like i was going to collapse. My friend was taking his time to get in the car, and i was so desperate to get in i even shouted at him to hurry up and stop messing around?!?! i think i am suffering from some seroius anxiety problem here. I just had to sit in my car for 10 mins before we could set off again. I think my friend knows how to deal with his dizziness as he was asking if he we were going to the pub!!! I said no way i need to get out of here.

so anyway guys ive hit a brick wall again. I need to go to London!!! How can i do this? The doctors wont listen and its only them who can get me there :-( my dad said he is going to try and find the number and talk to Linda privately but i said you cant just get the number like that dad, and she will have a receptionist anyway you wont speak to her privatley. I just know the ENT wont sent me there either, they are too confident in thier own and their colleagues abilities they dont think you need to see anyone else out of the hospital grounds.

Catch you all later.

J

Emsybobs 03-03-2004 10:00 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Hi Jonathan. Your neurologist friend sounds a total waste of time. Apart from ruling out problems with the brain neurologists are really not much help.

Ok you said you had private medical insurance? Go to your GP, ask for a private referral to Linda. They cannot refuse if its not private! In facvt ask if they'd do it on the nhs first, if they decline, go the private route. Do not waste time with anyone else.

The anti depressants may calm your anxiety but i'd be a little worried about them making the dizziness worse. I agree that you can get addicted and im personally not a fan of anti depressants. They mask the problem. Counselling or cognitive behaviour therapy for anxiety (linda does this) is far more favourable.

xxx

Fighter 03-03-2004 10:10 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Wow dude welcome to the twilight zone. If you were inside my head you wouldve written the same thing. I know how you feel man, Im 27 years old and have had this crap since feb. 03. Not to discourage you, but I have improved quite a bit or Im alot more used to it. the things that bother me the most now are the strange uncontrollable eye movements and fatigue and tiredness. it's caused some serious sleeping problems for me probably due to anxiety and depression. But exactly like you I used to be active and get out and always be on the go doing something and now it feels exactly like someone or something stole my life, it's very frustrating to say the least and Id be lying if I said I havent thrown fits of rage because of this damn thing. But I mean I feel lightheaded alot still and just have that slight off balance feeling all the time and no energy and I used to be way into sports and things and now I feel like Im crippled in a way. I know you know what I mean.

Shopping in stores used to be real bad for me but I can handle it fine for the most part. But what's weird is it's worse for me when pushing a cart(trolley) as opposed to just walking down the aisles pushing nothing.

I know all too well of the fog you speak of. Im always feeling ***** and just weird like Im another person, like Im a stranger to myself and like im in some kind of slightly altered reality, it's real hard to explain but it def doesnt feel right and it's def like this off out of sync unclear feeling.

I myself have had the blood tests and CT scan and been to the neurologist and they all told me the same thing. "It'll go away eventually". which sounded good to me, but like you Im not used to being ill and I want to be better now and I know it's hard to keep your head up. This last year has been nothing short of hell and it lead to the loss of my job and has basically turned my life right upside down. Im at a loss like you and Im beyond broke at this point financially. I've lost 15 pounds and my appetite is still crazy.

Things do become more manageable eventually and as far as reaching total recovery I still have faith even though it's very little. Ive had a few moments of clarity that lasted for very short periods of time. I almost feels like I've always got 2 drinks in me without any reason for it and like Im just waiting for something to click everything back on to normal. I dont know man, but believe me when I say I feel your frustration and hope this doesnt last long for you at all. It almost feels like a terrible joke that you're just waiting for someone to stop the whole thing. It would be cool to talk to you some more about it. I'll just try and keep up with you here. It's cool you found this board so you can atleast find some comfort that you're not alone.

That sucks about your neurologist appointment. I jsut recently had bascally the same thing happen with a neuro otologist I went and saw. He told me about the same things after he did his little balance tests. He said it doesnt seem like antyhing major and said ir I wanted I could get a couple more tests done that would cost me ateast $1000 dollars. If I had it Id do it. One was a rotary chair test and Im not sure on the other one, but I guess it just tells you if you're dizzy or not. lol...ok a little joke but the docs have really lost my confidence in them.

anyway man best of luck to you and I hope you find something out that'll be beneficial to some of us other people that are losing their minds as well. Hang tough man and I'll talk to you later. Fighter

jonp 03-04-2004 04:49 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
[QUOTE=Emsybobs]Hi Jonathan. Your neurologist friend sounds a total waste of time. Apart from ruling out problems with the brain neurologists are really not much help.

Ok you said you had private medical insurance? Go to your GP, ask for a private referral to Linda. They cannot refuse if its not private! In facvt ask if they'd do it on the nhs first, if they decline, go the private route. Do not waste time with anyone else.

The anti depressants may calm your anxiety but i'd be a little worried about them making the dizziness worse. I agree that you can get addicted and im personally not a fan of anti depressants. They mask the problem. Counselling or cognitive behaviour therapy for anxiety (linda does this) is far more favourable.

xxx[/QUOTE]


Well i am going to my GP today to do just that. My GP is alright, so i doubt he will refuse a referal. I spoke to Linda's receptionist who said once they get the GP's letter they will assess it and contact me, and its not a problem etc. Is that the usual routine? What if my GP does not make a convincing enough letter and Linda refuses or does not think that i have an inner ear problem?

Another problem is once Linda has done her initial tests / diagnosis wont she want me to go back to see her a couple of times for tests/ councelling etc? This is going to be a problem as i live in the North-West, and getting to London isnt that straight-forward.

regards to you all,

Jonathan

hbep 03-04-2004 05:16 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Hello there Jonathan,

I think once you've been disbelieved, mis diagnosed etc, it creates loads of anxiety re - will anyone actually recognise what I've got. I was really scared like you that the neurotology department (same as the one you're applying to) would be influenced by what the other docs had said and not diagnose me properly either. Or that my Gp would get the letter wrong etc.. But seeing as you're symptoms are almost identical to mine, and they pretty much knew in neurotology what was wrong with me straight away, and loads of people with inner ear disorders have the same symptoms, the chances of Linda/the neurotology department not thinking you're worth seeing are very slight. They are very, very used to people getting pushed from pillar to post, being told they don't have an inner ear disorder cos other specialists don't get it. They really do know all about this. I didn't have vertigo for 8 months, just, like you, dizziness etc... I was referred once I got vertigo BUT they told me straight away when I got there that lots of people with vestibular neuritis don't start with vertigo, but a more generalized dizzy feeling. Lots of ENT's and other specialists just don't seem to know this.

With regard to being in the NW and having to go back. If I remember correctly, once they take you on as a patient, they will ask you to phone them to set up an appointment. I know that Ilia travelled from Scotland and they arranged for her to have all the tests, and then the session where they explain the vestibular rehab over the the course of a couple of days, so she didn't have to go back unless, presumably, she felt at a later date she needed to see them again. When you call them, I presume you should just explain your position and hopefully they can schedule everything into a couple of days. Obviously you'd need to arrange accomodation, but it's better than travelling back again. I know Ilia had private insurance, don't know if that made it easier to schedule everything in over a couple of days, but I doubt it. I'm guessing they'd be helpful. Again, they're probably used to people travelling a long way.

By the way - don't know if you've printed out the info under the topic 'Which Specialist to See' - put that in word search and 'hbep' in name search, it'll bring it up. It basically explains what a neurotologist is - might be useful for your doc, if like mine, they've never heard of one.

Really hope it goes well with your GP. Basically, under the NHS, they really should be able to refer you. It comes down to finances - your health authority will have to pay for you to travel outside your NHS catchment area, BUT they SHOULD do this is there isn't a suitable specialist in your area.

best,

hbep

Emsybobs 03-04-2004 06:51 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
Ok Jonathan - if you are going privately you can indeed schedule the tests to occur over a couple of days so only one trip is needed. I am mainly going via the nhs so mine is more complicated. I will have tomake two trips. I have the same problem as you - or worse - as I live int he far north east - london isnt easy to get to for me either esp as i cant travel well on trains with this - but needs must. I so want to see a decent specialist, I just dont care.

Yes the should contact you once the fax has arrived or - like me - you could ring them and check if the fax has got there.

There is no way Linda will refuse to see you.

Good luck xxx

jonp 03-04-2004 10:33 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
[QUOTE=hbep]Hello there Jonathan,

I think once you've been disbelieved, mis diagnosed etc, it creates loads of anxiety re - will anyone actually recognise what I've got. I was really scared like you that the neurotology department (same as the one you're applying to) would be influenced by what the other docs had said and not diagnose me properly either. Or that my Gp would get the letter wrong etc.. But seeing as you're symptoms are almost identical to mine, and they pretty much knew in neurotology what was wrong with me straight away, and loads of people with inner ear disorders have the same symptoms, the chances of Linda/the neurotology department not thinking you're worth seeing are very slight. They are very, very used to people getting pushed from pillar to post, being told they don't have an inner ear disorder cos other specialists don't get it. They really do know all about this. I didn't have vertigo for 8 months, just, like you, dizziness etc... I was referred once I got vertigo BUT they told me straight away when I got there that lots of people with vestibular neuritis don't start with vertigo, but a more generalized dizzy feeling. Lots of ENT's and other specialists just don't seem to know this.

With regard to being in the NW and having to go back. If I remember correctly, once they take you on as a patient, they will ask you to phone them to set up an appointment. I know that Ilia travelled from Scotland and they arranged for her to have all the tests, and then the session where they explain the vestibular rehab over the the course of a couple of days, so she didn't have to go back unless, presumably, she felt at a later date she needed to see them again. When you call them, I presume you should just explain your position and hopefully they can schedule everything into a couple of days. Obviously you'd need to arrange accomodation, but it's better than travelling back again. I know Ilia had private insurance, don't know if that made it easier to schedule everything in over a couple of days, but I doubt it. I'm guessing they'd be helpful. Again, they're probably used to people travelling a long way.

By the way - don't know if you've printed out the info under the topic 'Which Specialist to See' - put that in word search and 'hbep' in name search, it'll bring it up. It basically explains what a neurotologist is - might be useful for your doc, if like mine, they've never heard of one.

Really hope it goes well with your GP. Basically, under the NHS, they really should be able to refer you. It comes down to finances - your health authority will have to pay for you to travel outside your NHS catchment area, BUT they SHOULD do this is there isn't a suitable specialist in your area.

best,

hbep[/QUOTE]

once again i cant thank you for how helpful you have been. I went to see my Gp who totally understood and didnt refuse at all about me going to London. He said yes i understand of course i will get a letter sent out tomorrow, based on everything that you have said to me today, and all the notes that the specialists have sent back to him. Once they contact me from London, which i guess will be a few weeks, i will explain that i am from the NW etc and whether its possible to do everything in a few days (if i get an appointment), or whatever is best for my dad as he will most probably be taking me. He might not be bothered travelling down a few times, but it just saves a lot of hassle doing it all in one stint. I have private medical insurance, so it might help. Anyway ill keep in toych on here in the meantime and ill let you know how things go with the referal.

keep the faith!!

j

jonp 03-07-2004 07:34 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
hi guys,

over this weekend i have been feeling a bit better. I have been getting some bad headaches but the brain fog has gone a lot, which is the main thing i HATE! I have not had tinnitus for ages now or pressure in my ear, but i have been getting a slight pain (nothing major and it only lasts a ferw seconds) in there. My eyes have been really really sore too, and i have had those behind the eye headches.

i have felt kind of normal at times, but not yet fully normal. I still feel weird. The thing i wanted to ask was if any of you guys have some tips on how to build my strength up. The docs just say build your strength up day by day, week by week, but it aint that easy - im tired all the time. Its does not make sense - the other day i didnt do much at all, and i was wasted at night time?!? The day after i went for a walk, and although i felt horrid after, i felt better the day after. i have been walking most days this week to try and get some exercise, but it just doesnt seem enough for me or it deos not seem to be doing any good. I want to try some real excercise but im scared that the horrid dizzyness and brain fog will kick in badly, like before. My friends are playing football tomorrow, and they always want me to play. I really really want to go, and everyone is saying im depressed because i dont want to go? Of course i want to go! I am just a bit anxious of whats gonna happen!!! I mean football is a game that requires a lot of co-ordination, head movement etc. I just dont know if ill be ok.

When i go and do things it can go one of either 3 ways:

1 - feel good and get on with what im doing
2 - feel ok, can deal with the dizzyness and just about carry on with things
3 - feel terrible, scared etc and need to go home and chill out.

I suppose i can only try and play tomorrow. If i feel dizzy i can just sit it out.

Its such an UP and DOWN illness. Fri night i was great but sat night i was more dizzy.

This morning i had a really weird dream about playing football! As i was dreaming that i was playing, i could feel my muscles aching, and then i woke up and i was actually aching all over?!?!? I could hardly move - now that was really really strange and it scared me a lot. What the hell was going on there?

So my question is how can i get my strength back up, as at the moment it seems to come and go when it wants without me doing anything?

hope you are all well.

jonathan

jonp 03-08-2004 09:03 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
PS - does anyone here with this wear glasses? I wear glasses but i also wear contact lenses. I have not worn my contact lenses for about 4 months now as my eyes are always very tired. Anyway, I put my lenses in today to see how they felt, as i was going to actually play football tonight, but when i put the lenses my vision was very strange and my eyes hurt. Does anyone know why this is? This is a very big negative as i felt good to play football, but as soon as i put my lenses in i realised i wont be able to play because of the strange vision. :-(

millsy 03-09-2004 02:05 AM

Re: constant dizziness problems along with vision/fatigue/confusion/balance problems
 
[QUOTE=jonathanp]hi guys,

over this weekend i have been feeling a bit better. I have been getting some bad headaches but the brain fog has gone a lot, which is the main thing i HATE! I have not had tinnitus for ages now or pressure in my ear, but i have been getting a slight pain (nothing major and it only lasts a ferw seconds) in there. My eyes have been really really sore too, and i have had those behind the eye headches.

i have felt kind of normal at times, but not yet fully normal. I still feel weird. The thing i wanted to ask was if any of you guys have some tips on how to build my strength up. The docs just say build your strength up day by day, week by week, but it aint that easy - im tired all the time. Its does not make sense - the other day i didnt do much at all, and i was wasted at night time?!? The day after i went for a walk, and although i felt horrid after, i felt better the day after. i have been walking most days this week to try and get some exercise, but it just doesnt seem enough for me or it deos not seem to be doing any good. I want to try some real excercise but im scared that the horrid dizzyness and brain fog will kick in badly, like before. My friends are playing football tomorrow, and they always want me to play. I really really want to go, and everyone is saying im depressed because i dont want to go? Of course i want to go! I am just a bit anxious of whats gonna happen!!! I mean football is a game that requires a lot of co-ordination, head movement etc. I just dont know if ill be ok.

When i go and do things it can go one of either 3 ways:

1 - feel good and get on with what im doing
2 - feel ok, can deal with the dizzyness and just about carry on with things
3 - feel terrible, scared etc and need to go home and chill out.

I suppose i can only try and play tomorrow. If i feel dizzy i can just sit it out.

Its such an UP and DOWN illness. Fri night i was great but sat night i was more dizzy.

This morning i had a really weird dream about playing football! As i was dreaming that i was playing, i could feel my muscles aching, and then i woke up and i was actually aching all over?!?!? I could hardly move - now that was really really strange and it scared me a lot. What the hell was going on there?

So my question is how can i get my strength back up, as at the moment it seems to come and go when it wants without me doing anything?

hope you are all well.

jonathan[/QUOTE]

Hi Jonathan

This illness does certainly appear to go up and down! I've started noting on my calender my "good" days and "bad" days to see if there was a pattern, but to no avail. I am getting more good days than I did back in October so it must be getting better!

Before this I used to do a lot of walking (to my work etc) but now, even after a short walk with my dog my muscles ache. I don't know if it's due to not having done a lot of exercise lately (not much good at my aerobics if I kept falling over) or if it's linked to this illness. I also notice my stamina is a lot lower than it used to be. 6 months without alot of exercise and my 85 year old gran is fitter than me!

Best Wishes to all

M.


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