I basically need some advice and reassurance from you guys please!

I am a 21 year old male from England, UK. In October 2003 i was diagnosed with an ear infection in my left ear, i got some medication and it cleared up after about ten days. But I started getting severe symptoms in November 2003. It started with a feeling of being severely light-headed and off balance at work ( i work on my computer/VDU) . It scared me at first, but i thought oh it will go away, but it didnt. By dinner time i felt awful. I rushed home and just got on my bed and stayed there until i felt slightly better.

Over that weekend i felt drained, very weird, light-headed and slightly sick at times. I managed to play football on the sunday and i felt ok, but in the evening i suffered badly and my condition worsened. For the following 3 weeks i felt 'spaced' out if you like. I suffered from constant dizziness and light-headedness. The doctors said i was suffering from vertigo due to a virus in the ear, and it would clear up in 10 days to 2 weeks or so. I was given betahistine dihydrochloride and stemetil (prochlorperazine maleate) for the dizziness - a months supply ( they didnt work at all for me). The strange thing is I didnt once feel as though the world was spinning around me.

Eventually, after 3 weeks, i began to feel better and went back to work, as i thought the feelings had died off a little. I was very wrong....... The following week i was in bed constantly, just sleeping mostly. During the worst times i was confused, extremely fatigued, tired, my muscles ached so bad i couldn't walk at times, i had burning eyes, loss of appetite, strange uncontrollable eye movements, severe headaches, tingling sensations in my head, stiff neck, difficulty concentrating and choosing words, and bright light annoyed me. I was just knocked for six, the symptoms were back and were worst, i didn't even know who i was at times. I felt very very weird.

I was sent to an ear, nose and throat specialist. After talking to him, he said to me 'march on the spot with your eyes closed'. So i did...... a little off-balanced, but i managed it comfortably. He said, you dont suffer from vertigo, you have had a virus, it sounds like viral meningitis. He sent me to see a neurologist a few days later. He said i was suffering from a virus (but not viral meningitis) which would take time to go. He sent me for blood test and a MRI brain scan just in case. At my friends house before christmas I vomited from the symptoms (before Christmas), as i felt very very light-headed and nauseated (not spinning around though).

In the New year all the tests came back clear, and after christmas the neurologist rang me saying i should get back to normal activities, and start building my strength up.

From around 10th January to around 17th Feb. 2004, i was getting out here and there, driving about, usually at night time as i feel a lot better. I didnt feel comfortable going out during the day, but at night i felt a lot better. I never went out properly though (day or night), only to peoples' houses. When i say 'properly' i mean out where this is a lot of things going on (stimuli - people, noises, fast moving things etc). During the day i felt worst......i felt like my head was not clear, everything i looked at just didnt seem to be 'right', its so hard to explain. I felt like ripping my head off at times! Its so frustrating. When i went out shopping i felt horrid. When i was in a shop i would look at things on a shelf, i felt ok at first, then the symptoms gradually built up, it felt like i couldn't look at one item on the shelf as my eyes moved involuntary all over the place, and i got frustrated, light-headed and scared and i felt like i had to get out of the shop quick. I didnt suffer from complete spinning sensations though, i just felt off balanced and had this constant fog in my head and eyes, and felt constantly light-headed with very small uncontrollable eye movements. At night it seemed to ease off a hell a lot.

Since the 17th Feb 2004, the symptoms have come on a little stronger again. I am once again housebound and I am now getting more pressure and ringing in my left ear (occasionally). I dont suffer any form of hearing loss ( any that i can notice anyway). I am OK in the house, but I cant go out or drive again (day or night).

I know there are many many things that can mimic Meniere's syndrome, but im just wondering if any of you know anyone, or if you have experienced a virus that has caused symptoms similar to meniere's syndrome. How long did they last? Did any of you have a virus similar to mine that then led on to the Meniere's syndrome? It does sound like a virus to me, as the symptoms i felt that week when i was tucked up in bed do sound viral, or did any of you guys suffer like this at first. I just need someone who knows what this feeling is like to help me. I am very very fortunate as i have only had one episode of vertigo. (it was very mild and lasted for about half a second, as i looked up away from the computer screen in fact). I was thinking it could be vestibular neurtitis (the viral infection of the ear), but i cant find any evidence of how long this lasts, or any cases of people having it etc.

PS my close friend has exactly the same symptoms as me, and they started about 2 weeks before mine did. He is going through the same things, seeing specialists etc. Is it likely this is a virus he has given me? If so, is that more reassuring, as viruses do die after a few months (although this is the 4 the month now), or did anyone's Meniere's syndrome begin with a virus??

Please please help as i am getting quite depressed, i am 21 years old, and i am just house bound 24/7. I used to be active, never tired, never down or depressed. Please help. I have not been told what is going on by the doctors properly yet, im just scared im going to have this for years. I am going back to the specialist this Tuesday ( the 2nd march 2004). If anyone can give me advice of what to tell him, please help.

regards Jonathan

Hi Jonathan,

Has anyone mentioned Labyrinthitis to you? This is a virus of the inner ear, I have had this since the middle of October last year, although it does now seem to be getting better. I felt exactly as you do, I too have never experienced spinning of any sort. Labyrinthitis does take quite a while to go, it is not a run-of-the-mill type of virus and it can and does take the pattern of getting better then worse again, then better. I really dont think you should concern yourself with Menieres, people with this tend to have "attacks" of spinning vertigo and hearing loss which you dont. I'm afraid the only advice I was given was to sit it out and to avoid medication as this can stop things getting better on their own.

There are other far more experienced people on this board and I'm sure they will offer you more advice but mine is try to relax (hard, I know) and believe it will get better although it may take some time.

Chin up,

Lizzy x

Ps I found staying active a great help although I know this is not always possible.

Hi Jonathan,

Sorry you're going through this, you're in the eye of the storm, it does get easier.

I know you want to hear this is a virus, but to be honest it sounds very much like an inner ear disorder, the title of your post pretty much sums up all the things you and many others on this board, myself included, experience with one. ENT's are notoriously bad at diagnosing inner ear disorders. Strange, I know, but ENT's are required to do no further training in the inner ear and often get it wrong. Occasionally they understand dizzy disorders, but only if they've bothered to look in to it. There are super specialists in balance disorders called neurotologist (different from neurologists) who are highly trained in the diagnosis of vestibular disorders. There is a neurotology department in London, in the National Hospital of Neurology and Neurosurgery. To save yourself being passed from pillar to post, talking to specialists who look at you blankly etc.. I would push for a referral there. Ask to be referred to Linda Luxon. They are totally familiar with the disastrous care and diagnosis people often get through ENT's, will be totally familiar with every single symptom you have described and will perform the correct tests. I saw 2 moron ENT's before I ended up there. Neurologists are also not the best people to diagnose an inner ear disorder, which is probably why he told you you have a virus. If you want a description of what a neurotologist is put 'hbep' in name search and 'Which specialist to see' in word search. You need to go in to the advanced search option to do this.

The fact you felt virally isn't inconsistent with an inner ear disorder, it can often make you feel that way, especially in the early stages. The fact that your friend came down with this simultaneously is also not inconsistent with an inner ear disorder, viral labyrinthitis and vestibular neuritis weirdly can happen in epidemics, someone on this board came down with lab at the same time as a co worker. A lot of people jump to the conclusion they have menieres, they read tinnitus and a full ear feeling and presume those are merely menieres symptoms, many people with vestibular neuritis experience similiar. The text book descriptions of lab or VN is initial bouts of violent vertigo followed by dizziness, this is actually a bogus description, many people have a slow build of the type you describe, with no spinning vertigo. Another condition this could be is something called Migraine associated vertigo, this typically happens in 'attacks' followed by remission, but there are atypical varieties that cause 24/7 symptoms. My guess from your description is that you have vestibular neuritis, and this would be your initial diagnosis, if people have 24/7 symptoms they often only explore migraine if the treatment for VN doesn't work out.

As I said at the start, although this can go on for a while, the symptoms don't stay at the same level of severity, you won't always feel like someone chucked a soup tureen in your head and that you are permanently stuck in the wrong glasses prescription. I've been where you are now, almost to a T, I'm not fully recovered but life is much, much easier than it was. Lizzy is right, try very hard not to panic. One of the reasons a diagnosis is so critical is that it gets the awful feelings of anxiety about what the heck is happening under control. Obviously also, they can get you started on the right treatment a.s.a.p. Try and get your doc to refer you to neurotology, even if some idiots along the way try to tell you this isn't an inner ear disorder - been there gor the T shirt. The neurotology department will see people with your symptoms all day every day.

I hope this helps, any other questions just ask,

best,

hbep.

Hi,

Just a very quick note just to agree whole heartedly with the above posts, sounds sooooo like viral labs, all that you have had I too have experinced and still do. On hbep recommendation I went to Linda Luxon and she was absolutely fantastic!! had the proper tests which showed inner ear dysfunction (caused by labs), long story short - go there. I too wasted buckets of cash on an ENT and various other so called proffesionals only to be given incorrect diagnosis and prognosis.

Let us know how you get on and good luck!

Oh on a positive note, if it is inner ear the out look is great, you should make a full recovery once the old brain compensates fully.

hi there guys. YOu have been soooooo helpful saying that you have the same symptoms as me. AT last some other people who understand! And you have really given me hope saying that i am going to get better. I hope you are right saying its labs, as i thought i had some kind of super virus that i was never gonna shake off!!! I didnt think this could be something to do with my ear because of the fatigue symptoms etc. I just didnt realise your ear could make you fatigued!!! Maybe this is how most doctors think too???!?!?

On tues i will put this forward to my specialist, and if he just politely ignores what i say then i will argue it further by saying i have been on the internet and tell him what you guys have said, about being messed about and diagnosed incorrectly. If he still says its just a virus i will try to get an appointment with Linda Luxon like a few of you said. Is she just by referral only? Will it be difficult to get referrred to her? Can my specialist or GP get me referred there? And how long am i looking at to get an appointment?

Once again i cant say how helpful you have been.

regards Jonathan

sorry i meant i can say you have been very very helpful!!

just one more thing....... i have been lazing around the house depressed recently, well not lazing more like i can hardly walk outside the house!!! But anyway i wont be doing myself any favours for a quick recovery will i? Keeping active will help my brain reconfigurate more quickly, i this correct?

The problem is I feel like i just cant go out though. It scares me. I think i am going to collapse all the time when i am anywhere apart from idoors. At the worst times (like now) i can only just cope being indoors. Are there any tips you guys can give me on what to do? HOw to start off, and when to start off going out again. are there any exercises that would help me? Should i get out there right away or wait until this relapse has passed before i start doing things again. i dont want to over-do things.

I know that no one can put a time on the recovery phase, but if the illness goes into months - how long on average is recovery?

thanks again jonathan

Hi Johnathon,

Fear not my friend. You have described all that I have been through to a "T". I too had a terrible viral thing going on for about 3 weeks in the beginning and had many of the symptoms you have described with it. And I had periods of up to a week where I would feel really good again only to get totally flattened by it, sometimes for no reason at all. The whole thing you describe about everything looking weird is normal for this too. I know what you mean...head fog, light-headed, all of it. I never had hard core vertigo either...instead, it's like you're looking at the world through a fish bowl. Hard to keep your eyes on a fixed point in the distance right? It really sucks I know but it gets better. Unfortunately the rate of recovery is so slow it seems undetectable at times. I have to constantly remind myself of how much worse things were 2 or 3 months back (I'm at 6 months now). Oh by the way, you are describing "viral labyrinthitis".

One word of advice to you: keep a close watch on your state of mind with this beast. I started developing some very bad anxiety in month 4 followed by very short periods of nasty depression (like 5 hours at a time). It was clearly affecting my recovery and so I had to sort it out with medication. Prior to the illness I had never experienced anything like this before. It affects everyone differently....be careful about "avoiding" things due to fear. That's the real danger with anxiety problems in that it starts to affect your quality of life (ie. you stop doing the things you used to do). Even if it scares the pants off of you, get out of the house and keep doing the things you used to do as much as is possible. The fear will subside. It can't harm you.

Feel free to ask any more questions. You're not alone and it will go away. Hard to believe, I know, but it does. There are some members on this board who have totally recovered after being through the wars for almost a year.

Here's a good place to start reading about everything dizzy:

(Approved by mod1)
http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html

Cheers....Scott

Hi Jonathan,

You said:

On tues i will put this forward to my specialist, and if he just politely ignores what i say then i will argue it further by saying i have been on the internet and tell him what you guys have said, about being messed about and diagnosed incorrectly. If he still says its just a virus i will try to get an appointment with Linda Luxon like a few of you said. Is she just by referral only? Will it be difficult to get referrred to her? Can my specialist or GP get me referred there? And how long am i looking at to get an appointment?

Yes, if you want to see Linda it is by referral only. There shouldn't be any problem getting referred to her, which doesn't mean to say you won't meet some resistance. Your Gp can do it, as can a specialist. My Gp referred me, it took a bit of convincing, she's very nice, but knew less about this condition than I did at that point and didn't actually know what a neurotologist was. Basically, although I am in London, the hospital was out of my catchment area. The reason she was allowed to refer me was because there wasn't a neurotologist in my catchment area. I think the NHS rules are that you can go outside of it if the correct specialist isn't in your district. The chances of there being a neurotologist in your area is remote. Obviously, if you go privately, then your GP is obliged, within reason, to refer you wherever you want to go, you're paying, all he or she has to do is write the referral letter, but hopefully it shouldn't have to come to that. It took me about 2 months to get my appointment from the time my GP wrote the referral letter. I phoned the hospital and asked them directly how long it would take, you can do this, they were happy to answer all my questions. Just phone the hospital and ask to be put through to neurotology. I am not allowed to give you the number on this site, but it's easy enough to get hold of.

With regard to talking to your specialist on Tuesday about being referred, I'm sure you'll go easy, but try to keep them on your side. Obviously if you tell them about misdiagnosis and rubbish care people have had, the last thing you want to do is make them feel they are included in that category, denting their ego etc... Also, some, not all, specialists can get very touchy about the internet. Rather than understanding it as an excellent and helpful resource, which often finally gets people the help they need (this is true of me and many people on this board) , they imagine people go on it and work themselves up in to state, imagining they have things they don't. It's an infuriatingly patronising attitude some docs have, but it happens. I told my Gp the truth in my case, which was that I had been put in touch with a friend of a friend who'd had a vestibular disorder and all the same symptoms as me, he had been referred to the hospital I mentioned. Of course, ironically, the way he had heard about neurotology and the National Hosp of Neurology and Neurosurgery was from another dizzy sufferer on the internet, but it did mean I didn't ever actually have to mention the internet to my doctor.

Anyway, I hope this helps. With regard to how long these conditions go on, well, it depends what you have. If you have VN/viral lab, then it's always difficult to say. Generally speaking the sooner you start vestibular rehabilitation - what are known as the Cawthorne Cooksey exercises, the better your chances of recovering more quickly. This is one of the reasons why it's good to get a diagnosis as soon as poss. Unfortunately, beyond that fact, it's a bit of a how long is a piece of string situation. Some people come on here with dreadful symptoms but get well in a few months, others, like me are ill for much longer, although as I said, the symptoms definitely lessen in severity as it goes along.

In terms of getting out and about, I'm am loathe to give you advice until you have a definite diagnosis, but if it is VN, then yes, it's important to keep moving, allow your brain to compensate (learn how to work in tandem with the damaged balance nerve.) In short, the answer is to do it, but obviously not to over do it. There's no point pushing yourself to the point of total exhaustion and overwhelming symptoms, it's all about small steps initially, and as you get better you can build on that. Try going for a walk every day, that sort of thing. Do stuff to the point of starting to feel bad, then back off, then try again when you feel ok again.

Good luck in getting your referral,

best,

hbep.

thanks again everyone,

how weird is this illness?? I woke up today and i felt soo much better than the previous 2 days. I have so much more strength, i just cant understand how it can just come and go like that!!!! But now that i have been on this computer for a while i feel very dizzy again!!!!!

i live in the North-West and i've searched the interenet for neurotology departments in my area, but i cant find any. Whether there are i do not know? Maybe my speciailst will know. If there are, then i guess it that means i have to go and see them. If there are not, then i can try to get referred to Linda Luxon. Anyway i will let you all know how i get on tomorrow. Wish me luck and thank you so much. :-)

Hi Jonathan.

I'm 23 and live in the north east - have just read your post and can identify with it all. I have had Labyrinthitis for 16mths. I have the same symptoms as you. The brain fog and tiredness and extreme low stamina I can relate to v much. It's all part of this mess!!

Ok noone can put a time limit on this. But what seems to be apparent is that Labyrinthitis can go on for a lot longer than you read on the internet - there are cases like mine and other people on here, that drag on because the brain does not compensate well. I wont lie, it is a nightmare illness, v slow recovery ont he whole but VRT (like physio) is the key and if you go and see Linda (am shortly too for a 2nd opinion) she will put you on a VRT programme.

I have got quite down with this as any chronic illness would. I am young like you and want to be out enjoying myself. It's abeen v difficult to deal with plus all the v strange symptoms. Try to remain positive, there are loads out here who have the same and in most cases it does go.

The key is to get the right diagnosis, have the right tests. Definitely go to London. Good luck with the referral, if not go privately if you can, you c an always start that way and end up on the nhs. There are different ways of doing it.

Keep smiling xxx

Thanks, i have read things on the net saying that usually it lasts for a few weeks to 3 months. If this goes on for months and months and years are you guys sure its not something to do with Meniere's Syndrome?

Anyway i got a list of those Cawthorne-Cooksey exercises today. I started experimenting (could this do me more damage than good by the way????) and i did most of the exercises - initially they made me feel pretty god damn dizzy for a few seconds - especially the ones where you move your eyes from side to side. It also made my ear get that pressure feeling in it. Anyway after doing them i did feel a hell of a lot better and i have been taking some kind of vitamin B and tincture of echnesea and ginko something or another, (spelt wrong!) which is meant to get your immune system back up and running. Whether im just having a good day i dont know, but i felt really great. I have had a whole load of confidence today, and i went for a walk on my own for about half an hour. I controlled the feeling of anxiety whenever i got dizzy, and it seemed to calm the dizziness down too. I then thought sod it, and went for a drive too!!! Im really chuffed. Ive kept active all day and kept my mind off it. Ive got a headache now thoug!!! I really really hope this is the start of recovery, and i hope my body isnt luring me into a false sense of security, and tomorrow ill be back down to square one. LIke a few of you said.....you get ill, get better, get worst and then get better again ..... hopefully i am finally getting better.

I just thought maybe that the extra confidence was given to me from you guys, you really are great. Even if i feel rubbish tomorrow, i dont care as i have felt somewhat 'NORMAL' today!!!!

checking out, j

PS i have private health care, so will this aid me in getting a referral to Linda Luxon.

PS i have private health care, so will this aid me in getting a referral to Linda Luxon.


My daughter was dizzy and had what she thought was an inner ear infection but no insurance. I don't know how it works where you live but we have a lot of elderly people here who need hearing aids. They do this testing where they go into your ear with a camera and let you watch. They do this free to try to sell you a hearing aid. I know, it is dishonest, but I took my daugher there and told them that she needed a hearing test. They found a viral infection, a black mold growing on her ear drum. They attributed it to swimmer's ear and told her to wear ear plugs while showering or in the bath. We were able to get anti-biotics from her doctor over the phone so it only cost us for the meds. Saved us a bundle on tests.

So, my mom came up with the same thing. Kept falling over, thought that she would never be able to work again. Went on for months. I sent her in to the same guy, same outcome, again, low cost solution.

You may not have the same infection but as long as they are in there with the camera, which doen't hurt in the least, they can give you a free diagnosis.

hey - had similar symptoms to you in August and supposed it was a virus. Initially couldnt eat because felt like I would be sick. This gradually decreased over time - the main symptom that remains is sommetimes feeling 'weird'. Like things are back to front, inside out, white is black ???? just generally bad. I found that any amount of alcohol at all increased the symptoms overall ten fold. Now I go to the pub and have a pint of lemonade (how embarrising) but I dont feel as bad anymore and have a full wallet in the morning!

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

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.

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

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

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

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 :

http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html

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

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

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

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


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

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

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

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

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

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

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. :-(

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

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.

Hi Jonathan,

Re - both your questions. To be honest I think everyone is different with regard to how much they can do. In general it's a good idea to push yourself, but not too so hard that you just end up feeling overwhelmed and dreadfully ill, it's often a question of trial and error. The fact that there is no consistency in how well you do, some days ok, some days not, is, unfortunately all part and parcel of this disorder. The recovery is not linear, and sometimes why you are better on one day than another just makes no sense. The only definite thing I can say is, you will improve, it just won't seem like it sometimes and don't be put off going out if sometimes being active makes you feel worse, this is a BIG mistake, whatever happens, as long as you don't exhaust yourself, it's important not to get phobic about going out. Just be sensible about it, if you need to rest, then rest, if you're just too ill to do stuff one day, then keep it low key, save the bigger stuff for days you can manage it.

The glasses/contact lens problem is common with an inner ear disorder. Every time you wear something different, namely different glasses, or changing from glasses to contacts, your brain has to do a whole host of calculations to understand the change. In someone with no vestibular disorder this often takes an initial adjustment period where they might feel a bit off. In someone with a vestibular disorder it's harder, your brain is already v. busy trying to work out what's going on with your damaged balance nerve, so throw in some new visual info and your symptoms can take a bit of a dive. If you want to be able to shift between your glasses and your contacts it's a question of toughing it out, dealing with the increased symptoms until your brain has habituated to the shift. You will get there if you persevere but it takes time.

By the way - excellent news about the referral to the hosp - hope you hear from them soon.

Hope this helps,

hbep.

Hi Jonathan,

Re - both your questions. To be honest I think everyone is different with regard to how much they can do. In general it's a good idea to push yourself, but not too so hard that you just end up feeling overwhelmed and dreadfully ill, it's often a question of trial and error. The fact that there is no consistency in how well you do, some days ok, some days not, is, unfortunately all part and parcel of this disorder. The recovery is not linear, and sometimes why you are better on one day than another just makes no sense. The only definite thing I can say is, you will improve, it just won't seem like it sometimes and don't be put off going out if sometimes being active makes you feel worse, this is a BIG mistake, whatever happens, as long as you don't exhaust yourself, it's important not to get phobic about going out. Just be sensible about it, if you need to rest, then rest, if you're just too ill to do stuff one day, then keep it low key, save the bigger stuff for days you can manage it.

The glasses/contact lens problem is common with an inner ear disorder. Every time you wear something different, namely different glasses, or changing from glasses to contacts, your brain has to do a whole host of calculations to understand the change. In someone with no vestibular disorder this often takes an initial adjustment period where they might feel a bit off. In someone with a vestibular disorder it's harder, your brain is already v. busy trying to work out what's going on with your damaged balance nerve, so throw in some new visual info and your symptoms can take a bit of a dive. If you want to be able to shift between your glasses and your contacts it's a question of toughing it out, dealing with the increased symptoms until your brain has habituated to the shift. You will get there if you persevere but it takes time.

By the way - excellent news about the referral to the hosp - hope you hear from them soon.

Hope this helps,

hbep.



even when im better, i.e. fully recovered and i put my lenses in, will i still find it difficult to use my lenses. i.e. will my brain still need to compenstate? Or will i only get these symptoms whilst i am ill. If so ill just wait until im better to wear my lenses - and find an alternate means of exercise for the moment as the symptoms were very bad and i didnt feel comfortable at all!!!

Hi, I have had symptoms for about two months now, it started the day after I returned from an international flight, the next day I felt all woozy, kind of a drunk, spaced out feeling. A few days down the road it turned into lightheadedness, and pressure in the forehead, and headaches, so I went to see a doctor about possible sinus problems, they put me on meds and said thats what it was. Well after two weeks, nothing cleared up, so the Doctor ordered an MRI of the brain and sinusis, and it came up normal, the only thing was there was a small polyp in the maxilary sinus. So I went to an ENT he tested ears and everything, nothing came up so he sent me to a neurologist. He examened me and did blood test and an eeg and nothing came up. And I am still having symptoms of lightheadedness and headaches, and pressure, a spaced out feeling, any suggestions, I"m going crazy, could it be that it will go away on its own, also one more thing when I am up walking, I feel like I can fall over to the right, but never do, help

Where are you from Megargy? Next stop for you I feel is a Neurotologist. Probs after flight could be Eustacian tube or sinus or ear related. xxx

try vitamin b1 (100 mg) a day. you will see that it will clear in 2 days. also use avomine instead of stetemil when you under attack.
dr.Gunduz

Im new at this. Ive had my symptoms for 3 years and have been to every dr including three neurologists. I was a college football player and a cop so im not used to being inactive and stuck in the house 24/7. my sympotms are:
weak mornings
off balance feeling
dizziness when i look up and down,
wash a car, go into a store etc
also my vision is messed up like sparks and images are raised, but when the neurologist gave me vison tests i passed them.
***** mornings
weak hands

this seems to be mostly a ear site, so if i am barking up the wrong tree im sorry,,

very fustrated
bh