Hi all,

I've had problems with my ears for 6 months now and it's been fantastic finding this message board. I was wondering if other people out there are experiencing cognitive problems. I probably have eustachian tube dysfunction - fullness/pressure in ears, dizziness not vertigo, ear pain, tinnitus, spaced out etc etc, still awaiting a definite diagnois - but the thing that has driven me most mad is the foggy headed feeling that accompanies all this. I've now read up on ear disorders and know that what is called, I think, mental processing overload, is common. Your brain is so confused as to how to keep you upright it doesn't do it's job properly in other areas. So basically you feel like someone has poured a can of soup in your head. I have been getting slowly better, and so have the cognitive symptoms, but I still feel like my thoughts are always spacey, like I've taken some sort of drug, which makes me feel less sure of myself and is very unnerving. I won't bang on about this now. I'm really keen to hear other people's descriptions of this, if there are any, then I'm happy to swap info/experiences.

NB. As this post was written over 4 yrs ago but is often found in the archives and bumped up, I thought I would add a note to it. I was eventually diagnosed with MAV which stands for migraine associated vertigo also known as vestibular migraine. The foggy headed feeling I talk about, I now know, is common with both MAV and inner ear disorders such as vestibular neuritis, labyrinthitis and menieres disease. I didn't ever have ETD - eustachian tube dysfunction.
------------------
hbep

Hi...has your ENT found hearing and pressure problems?

I have Labrynthitis and know just what you mean about cognitive probs! I also feel very "thick" and spaced out mentally when the dizziness is at its worst. Not nice...

Hi Emsybobs,

No, nothing showed up on my pressure test and my hearing is fine - BUT - my ENT/otologist did say that the pressure test could show different results depending on what the fluid in your ears was doing on any particular day. I am waiting to see him again, it's taking a while, so I don't know for sure. I've been reading everyone's posts for a few days now and I'm guessing you're wondering if you've got Labyrinthitis or Eust tube dysfunction. The reason I think I have ETD is because I get what I call dizzyness, namely a spaced out feeling rather than spinning/vertigo. Also my first symptoms were not a sudden attack of spinning, but a sudden feeling of full ears, tinnitus and feeling disconnected. I also had a terribly inflamed nose from rhinitis about 3 yrs ago, it feels like the same thing is going on in the tubes in my ears. If you're wondering about this you should read the posts from Wendy222. She was on the site in the last year. Someone mentioned her so I put her name in the search engine and it brought up all her posts. She never had hearing loss, her pressure tests all showed up clear, she had all the same symptoms as me, and after seeing 9 ENT'S !!! eventually she had tubes put in and got better v. quickly. The fact is I don't know what I have, but reading Wendy's posts I could've written them myself they were so similiar to what I've been going through. Whatever the hell it is, it's awful LOL. Fed up with feeling like I'm "thick" and swimming underwater. Do you feel like your brain is a bit souped up even when you're not having a dizzy attack? I feel "off" all the time, although it's worse when I am really dizzy.

Hello... reading your post is very interesting as many of us on these boards (as I'm sure you have read!) have had the pressure tests done and have been told that the ear pressure is fine; yet, like you say, surely it depends on the day/time of day, etc...
The spaced out feeling is definitely something I can relate to, although, thankfully, am no longer feeling like that ALL the time. And YES the underwater feeling too!! Am starting to get spells of not having these feelings and it's like a light bulb being switched on in my head! I'd actually forgotten what it feels like to feel normal. Know just what you mean about feeling 'off' all the time, too.

Ruth
xxx

I too had this blocked feeling in my right ear however have had no problems with hearing. My ENT could also said that my ears were not blocked although they felt like it!. Over the last few days the blocked feeling has eased off and on two occasions it seems to of eased after a short spell when I could hear/feel liquid inside my middle ear rattling around. What I have also noticed is my dizzness/in balance has dramictally reduced and has almost gone. So this has left me wondering what it is I had, was it Labyrinthitis?. Certainly something going on. Does anyone know how ETD affects your balance when the E tude is not part of the inner ear?

Good to know I'm not alone with my soupey head LOL

Hmmm, I've wondered about this whole thing of how the eustachian tubes would effect balance. Although with me it isn't so much balance issues as dizzy/spaced out sensation. From stuff I've read on the net, in my desperate attempts to find out what's going on, I'm guessing that inflammation in that general area could mean that something presses on the balance nerve, causing problems. Also, read something else that suggested your eustachian tubes could be inflamed without necessarily being full - if you get what I mean. I think this is prob what's happening with me. The same thing happened with my nose - no nose blowing all the time - just v. bad inflammation. It makes sense that if your eustachian tubes are inflamed and locked off you're going to feel dizzy and like you're in a bubble. Although I have also experienced a lot of smacking sounds in my ear, like they're wet, and one night distinctly remember hearing a weird draining sound in my right ear after which I felt a bit better. Hmmmm. So who knows. I do think from what I've read that ear pressure tests are not necessarily to be trusted, and nor are consultants LOL. I'm also a lot better than I was, but not completely - after 6 months I guess I'm just getting impatient.

HMMMMMMMMM. You have all got me really wondering...

I'm just not sure whether I have ETD or not! I think it's weird that mine all comes back with colds and although they say L'itis does do that, it could be a prob with the E tube.

My ears have never been very full though and I think with ETD they are. Mine are just full when I get a cold (more so than they used to) but I think with ETD you have quite severe pressure and draining going on.

xxx

Hmmm, now I'm wondering. I'm pretty convinced I've got ETD, but am wondering if it could be labyrinthitis. How did yours start, Emsybobs? Is there anyone with a labyrinthitis diagnosis who hasn't had vertigo, just feels/felt v.lightheaded to start with?

OH YES, mine came on v gradually and it has never been vertigo. Felt lightheaded at the start. L'itis can start like this I am told.

Also hbep, what did your ENT conclude you had?

Hi Emsybobs,

No definite diagnosis yet. The wait for ENT is horrendous in my area. Also, as this came on quite slowly, I didn't get myself referred to a hospital as soon as it happened. Eventually got so fed up waiting, saw the consultant once privately just to get an idea of what's going on. All he did at that stage was a hearing/pressure test. He rang and told me those had come back fine. On the basis of that he probably ruled out menieres, we discussed the possibility of Eustachian tube dysfunction, migraine associated dizziness and vestibular neuritis. He was less keen on the latter cos of the lack of spinning/vertigo. As I was only 4 months in at that stage, he gave me some vestibular exercises to do and he said to wait for my NHS appointment and see how I was doing then. He told me that ear disorders are a six months plus recovery and often by the time people actually get to see him on the NHS they are better - LOL. It's true that I have improved a lot since I first got it, my appointment is in a few weeks now. Am a bit concerned that in The States people seem to get tests like the ENG and caloric and an MRI much more quickly. Have you had an ENG and caloric test? Have they found vestibular damage to the nerves in your ears?

As for your question from the other topic list - hmmm, coping strategies - muddling through really, trying not to panic as it seems to make me feel worse, talking to other people with this, reading everything I can. The friend of a friend I was put in touch with at the beginning was a bit of a life saver. I was soooo ill once this really kicked in, unable to work for 3 months. Spaced out/dizzy, foggy head like you wouldn't believe, nausea, dreadful tinnitus, ears like I'd had a blanket stuffed in each one etc etc.... He kept reassuring me it would get better and it has. Although I'm still fed up that my head feels floaty all the time, can't wait to feel normal again. Think I might have to have a big party to celebrate. I'm lucky in that I am freelance and work from home, so that has helped.

Haven't had a cold since I got this - although I did get a bit of a chest infection which immediately made me feel much worse for a couple of days. V. worried about the cold thing - can't imagine it would be good.

Emsybobs,

Forgot to say, in terms of coping, have been having acupuncture for a few months. I also started taking ginko biloba, vitamin B6, and magnesium. I think all of these may have helped, but it has taken a few months to see improvements.

Hi...thank you for your reply.

I saw an ENT privately as too long on the NHS. He did pressure/hearing tests and confirmed it was L'itis.

Because I've been to see him, my GP is reluctant to put me on the NHS list. DEBATING going elsewhere privately. I am worried about ETD.

I think it is L'itis and it has improved but slowly. I think as you say, inner ear things take a long time.

I have just started on Magnesium and it has helped I think. Gingko didnt help much. I have acupuncture anyway for tension headaches and it has been amazing. Asked them to do stuff for my ears but no real progress there.

The reccurrence thing is the bit that makes me feel down. Just as you are getting somewhere, it is bad again.

I didnt have tinnitus or pain - so those symptoms may be why your ENT suspects ETD.

Keep us posted.

Oh as for the ENG etc, my ENT said he could do them but they would only show which ear was affected etc and they were really a waste of money because knowing that can't help anything anyway.

I also keep saying about the having a party thing to my friends, once this thing goes away!

Wow hbep, Your symptoms are practically %100 comparable to mine. This "disconnected" feeling is driving me absolutely crazy. I just feel so out of it, Alls I want is to feel normal again!!.

It started with Tinnitus in the right ear, Then I started having pains in both my ears and directly above my eyes on the top of my head, And then a tiny amount of tinnitus in my left ear, Then came the spaced out feeling, I started noticing it once and awhile, Then after about 2-3 weeks of noticing it here and their it became a 24/7 thing, God I hate it.

Most recent symptom as of about 3-4 weeks ago, In my right ear when ever I raise my voice it feels like its vibrating inside, It feels weird, Almost like a slight dizzy spell while its happening.

I've yet to visit the ENT though. Same thing goes for me with the long waiting periods, My appointment isn't till the 28th of this month.

I just hope this is fixable, I couldn't deal with this forever.

Good luck hpeb.

I too get that spaced out head feeling because of my ears
i have eustachian tube dysfunction so it showed on my hearing test and my ears get so blocked and full it also changes with the pressure in the air. the feelings are overwhelming with this i get a feeling like a lump in my throat, always swallowing over something, i get the out there head sensation. My throat feels swollen but not like a sore throat from a flue, its a different kind of sore. I get skull aches and my ears buzz and my head seems to go out in sympathy with all the symptoms.
they are doing a study with ears and anxiety and i feel they are looking in the right direction cause these feelings are enough to make you have a panic attacke
angel

Real relief to hear other people talking about this disconnected feeling - know what you mean about just wanting to feel normal again. At six months in I am much better on the dizzy front, ears much less full, tinnitus not so bad. My foggy head is also clearer but has not as yet ever cleared up completely. Wish it would soon as it's driving me nuts.

Kapheen - how long have you had this now? I've never had the ear vibrating thing - but for a period of a month I did get pulsatile tinnitus - I could hear a constant wooshing in time with my pulse in my right ear. That's stopped now, but it was horrible. The ENT I saw mentioned something about that being a sign of E tube dysfunction.

Angel - how is your doctor treating the ETD?

Emsybobs, I am surprised that as you saw someone privately your doctor won't refer you elsewhere, this seems a bit unfair. I'm sure you're entitled to an NHS referal. The bloke I know with Laby saw someone fantastic in London. He did all the research and found out who was meant to be the best neuro - otologist (I'm sure you already know this, but they are consultants who have done further study, beyond regular ENT, in the field of ears and dizziness.) If you're going to spend money I would look in to where there is a neuro otologist in your area as they are most likely to come up with the answers. I can't see this consultant my friend saw on the NHS as she isn't in my area, but if this problem persists I may see her privately when I get really desperate LOL.

The first symptoms were noticed about 7-8 months ago, Sometime last summer, Its been escalating little by little.

The word disconnected is the exact word I used when I describe the clouded head feeling when I first visited my doctor for the problem, They tried a few different things to clear it up with no luck ie: Anti histamines, nasal spray, A decongestant... Then finally a referral to a ENT which I'm still awaiting.

I too agree that this disconnected feeling can be a cause of anxiety or panic, I actually started taking Effexor (SSRI) a little over a month ago because I was having a hard time dealing with it. It was causing me to feel like a hypochondriac, I was getting worried over the smallest tingle of any pain I was getting, Thinking it might be yet another symptom to add to the list.

Hopefully this can all be dealt with in the near future and we can all return to normal-ness.

I'm off to work.

Hello.. I also saw a consultant privately as there was no way I wanted to wait 3 months on the NHS!
Coping strategies - just like everyone else really - trying not to panic when it gets bad, reading all that I can, plus visiting this site! After 3 months definitely signs of improvement, although am still anxious about how I will cope being back at work. I agree - I HATE the spacey feeling.
Like everyone else - have thought about having a party to celebrate when this is all over!
Have also had the swollen throat thing - my doctor said my glands were a little swollen, but have not had that for a few weeks, thankfully.
Can I ask what the caloric test is and the ENG? (Excuse my ignorance) Have had the hearing and pressure tests (fine) and an MRI (not yet had result).

Ruth77
xxx

ENG and caloric tests are the tests they do to see if you have damage to the nerves in your ear causing your dizziness/balance problems. I haven't had the tests, but a friend of mine with labyrinthis has. They aren't dreadful, just not that pleasant. They pour water in your ears to induce dizziness - then they do various things to test your eyes/balance, whilst you're dizzy.

Yes, I agree the whole anxiety with an ear disorder thing is a real problem. After the intial 2 months of having this I had about 2 weeks where I was so anxious about it I couldn't sleep as I was really worried it would never go. From everything I've read I know a lot of people with ear disorders are mistakenly diagnosed as having an anxiety disorder, partly because the symptoms sound similiar, but also because ear disorders cause so much anxiety, so they focus in on that when giving a diagnois and overlook the fact that a person is only anxious because they have an ear disorder. When I had a look at Wendy's posts who was eventually diagnosed with Eustachian tube dysfuntion, she was initially repeatedly fobbed off with prescriptions for valium etc...

I totally agree about the anxiety thing - the labyrinthitis came FIRST - the anxiety is the RESULT of feeling so bad for such a long time that you lose your confidence and worry that you will not get back to how you were before you got ill! I have found that the best thing for me has been to take a balanced approach. Don't push yourself too hard when you are going through a better spell, as each time you have a setback, you will get more disheartened. But, equally, not pushing yourself at all for fear of inducing dizziness is just as bad. I am trying to pace myself (difficult, I know!) For example, have gone shopping twice this week - this is quite an achievement for me!! Did not feel too bad at all - although in Marks and Spencers I felt like the floor was sloping sideways - really bizarre feeling!
At the end of the day, anyone who feels so bad for so long will experience some anxiety - it is perfectly normal. I know at times I have worried so much I've worried about worrying!?! Also felt like I could go mad with frustration. Have gone through whole spectrum of emotions - miserable, angry, sad, anxious, impatient, hysterical - and on a good day - sheer elation that I'm feeling like a human being!!!
Hope this makes some of you smile!

Ruth
xxx

Ruth
Yes, you made me smile! I'm going through a good phase at the moment and I feel on top of the world! Having felt this before however, I'm more cautious about thinking that this is the end of it all because it's all come back before. I'll enjoy it while it lasts!
Still dizzy 24/7 however and certainly don't feel my normal self. I also yearn for that healthy, normal human being I used to be.

Thanks Ruth, I needed that! Having one of those noone understands how this feels feeling and the whole thing once again seems over-bearing. Questions such as "Will this ever go?" and "Do people think I'm making all this up?" are going through my head! This thing can make you feel so isolated. Thanks to all of you on this message board.

xxx

This is ridiculous
why do we all have to suffer so bad with this ear thing
i have had no treatment or suggestions to help with this eustachian tube dysfunction
the doctors have not even explained anything to me
what i know i found out on the net
thank you all
angel

Yes, Ruth - made me smile too. Have to laugh at myself sometimes as I find myself day dreaming about what it used to be like to feel normal. I actually sit around remembering what it was like to hang out with friends, laughing and talking, when not spaced out etc etc... I'm almost cursing myself for taking it for granted - I didn't know how good I had it - LOL. I've sworn that if I ever get completely well I'll never moan about anything again - believe that when I see it, but it's a nice idea. Having a grumpy with being patient day today - I've worked out the best course of action for me is to try and remain completely calm, keep telling myself it will go, blah, blah, but sometimes this gets so tedious and I want to be unreasonable and just moan my neck off about it. Or alternatively worry myself sick that it will never go.

On the up side for all of you out there, so glad you are there as it's amazingly helpful to hear other's experiences - my friend who has had labyrinthitis for a year is almost 100% better.

Yes, thanks everyone. It really helps to 'talk' to others going through the same thing....and good to hear that someone who's had it for a year is nearly 100% better! I am preparing myself mentally for the long haul...as long as I know it will go away at some point I can keep my spirits up.

It is VERY comforting to hear about people who are going through the same thing as you. If I ever do get better, I will never ever take my health for granted, and I will make the biggest party...

Mpaiement,

These are exactly my thoughts now.

Only now I realize how we take our health for granted when we have it, and when we lose it - we know we would be so immnesly grateful to just get it back (and ask for NOTHING else beyond this).

I can relate very much to many symptoms people mentioned here. It started a month ago.

1. First, a fog installed over my head and eyes - though I COULD read (so I knew it wasn't a "vision loss" problem).

2. Then, one night I got up with my nose running really bad, and all the "common cold" symptoms, blowing blood in Kleenex, but no fever.
All fine - I've had that before.

3. What I'd NEVER had before was this increasing dizziness,lightheadedness, spaciness, pressure in the back of my head and foggy eyes.
THIS was new (and these also happen to be symptoms for brain tumor).

3. A week after - went to the family doctor - he said it was a sinus/ear infection, put me on Amoxicillin and steroids.

4. Fine and dandy, the common cold symptoms seemed to wane down - but NOT the constant dizziness. This acts like it is here to stay.

5. One week later (that is on Wednesday), I went to the neuro, he performed all kinds of coordination tests on me - then said it is most probably from the ear infection. He did order an MRI for my peace of mind (which I completely lost since dizziness set in).
I am going to have it in a few hours.

6. Needless to say I am scared like I've never been before.
I can't function anymore, I feel out in space, wobly and very much disconnected from everything.

I read up on virus/inner ear infections/vestibular neuritis/labyrinthitis and I want to believe that it is something related to this.
I do have a long hisotry of upper respiratory infections (sinuses, allergy, colds, etc) - but I still can't help obssessing over the brain tumor odds.

Please help...

Hi Syracusa,

There's obviously only so much help I can be as I'm not a doctor, but I'll give it my best shot.

As you've seen a lot of people on this board have similiar symptoms to you and they are suffering from inner ear disorders. Also having a history of allergies/sinus etc puts you in the danger category for ear problems. If you saw a neuro, he did coordination tests and said your symptoms were probably caused by your ears, then he's almost certainly right. He's a neuro, he will see people with brain tumours all the time - he will know what to look for, if he thought you had a brain tumour he would have been less eager to offer you the reassurance he did, because he'd be anticipating that everything might not be ok. Also, again, I'm not a doctor, but from the bit I know people with brain tumours generally present with other symptoms on top of the stuff you've mentioned. Sorry I can't be more helpful, but I'm not a doctor so it would be irresponsible of me to tell you everything will definitely be ok. All I can say is that in my opinion I think it's probably an ear disorder.

I really feel for you, these symptoms are scary , they have often scared me senseless. I haven't had an MRI, so obviously I don't actually even know that I haven't got something more sinister, and I have lain awake at night pondering that prospect, but the evidence all seems to point in the direction of an ear disorder, so I'm just going with that for the moment.

I really hope everything turns out ok for you, this message board is a fantastic support for all of us out there wandering around spaced out, dizzy and fed up.

Thank so much for the encouraging words. I am leaving to have the MRI in a few minutes.

I am very weak psychologically when it comes to even the slightest possibility for a life-threatening situation, so I know I would not have been able to assume ear infection 100%, without an MRI. This is why the doctor ordered the MRI, though he told me he expects it to be normal and for me not to need another visit.

I pray that everything will be fine. Logic, symptoms, doctors - all indicate ear infection, but my fears are still fears. I admire people who can get a grip of themselves.

Thank you for your support!

Syracusa

Do let us know how you get on...

I have yet another sore throat (this L'itis has really knocked my immunity) and the dizziness is returning badly again! Agh!!! May us all have good health soon!
Any good remedies for sore throats/viral stuff?!!

Syracusa... I think that you will feel reassured having the MRI; I certainly did, as I too am a worrier!
The whole isolated feeling is so true - I think we have all felt that. To be honest, if I hadn't come across this board by accident, I think I would have got pretty depressed - it has helped me more than I can say. Have even printed off some of the posts to show friends and family and I think it has helped them understand it a bit better too.
Emsybobs... it doesn't rain, it ****s, doesn't it?! Remedies for sore throats? Nurofen works well as it is anti-inflammatory and people often don't think of taking a painkiller for a sore throat but it is a pain like any other. The usual lemon and honey, gargling with salt water, etc... sure you know this already though! I like to eat sorbet, as it really soothes the throat!

Ruth
xxx

Hello All

Feeling really despondent today and guess I just need to vent to people who understand what I'm going through.

The stupid thing is that I am actually much better than I was. At 6 months in I am much less dizzy, managed to go out for a full 5 hours during the day on Friday. Ok, so it was up and down, light headed for a lot of it, but I would never have been able to do that even a month ago. It's the foggy headed/feeling slower mentally stuff that I can't bear. Again that's much better than it was, but it's never completely gone. I think what is so isolating about this condition is that whatever you're doing, socialising, watching telly, your spacey, foggy head is always getting in the way of enjoying it like you used to. What would I give for one day with a completely clear head. If I had a broken leg I'd be fed up, but it wouldn't impinge on absolutely everything I did and it wouldn't make me feel slow! Arghhh - sorry, must apologise, for the most part manage to remain calm and try and be optimistic about all this, but having a really down day. I feel guilty about moaning - I know there are people in the world who have life threatening illnesses and I can't even begin to imagine how they feel - but I guess this is a board for people with ear disorders, so if I'm going to have a self pitying vent this is the best place to do it. Very glad you are all out there, I agree Ruth, if I hadn't found this message board and people with similiar experiences I'd be really, really miserable by now. I'm just hoping that when I finally see the consultant again in a month he'll have some answers. I think you're right Mpaiment, from everything I've read over the past months, ears are not something many doctors are really informed about. My GP told me that I probably know more about ears at this stage than she does - which is not a source of comfort to me - LOL.

Emsybobs

Since getting the labyrinthitis I have been pumping myself full of echanaecia (spelling?). I have a friend who is a naturopath who swears by it. It boosts your immune system and should prevent you from getting colds and sore throats. It is not instant though. You need to take it for a few weeks/months for it to start working. I've been taking it for 3 months now and haven't had a trace of a sore throat and I've been around some pretty sick people. I had a sore throat after my first 'phase' of lab and my dizziness flared up quite badly afterwards. That's when I started on the echanaecia. You can buy it off the shelf in supermarkets or health shops in Australia.

Also, take multi-vitamins or vitamin C ALL THE TIME.

On a more positive note, I am feeling pretty damn good at the moment. I feel like I'm 75-80% my old self, which is not ideal but hey, after 5 months of dizziness and feeling completely spaced it's a fantastic feeling!!!! PLEASE let this be the beginning of the end.... Another thing I've done is that I've persevered with the Gingko Biloba. Worth trying everthing in my opinion.

Hang in there all of you!

Hi Jen... am so glad things are improving for you! MAybe the exercises are paying off?
Hbep... I too feel fed up even though I'm definitely much better than I was. I have felt guilty too - there will always be people worse off, that's true - but we shouldn't be too hard on ourselves! Anybody who feels like this for so long would be feeling the same, I'm sure. What you wrote is EXACTLY how I have been feeling.

Ruth
xxx

I also have just the same feelings.

Jen, I tried Echinacea and was on it for a while but still get cold after cold so have stopped it. YOu can also onyl take it for 2 weeks on and off as otherwise you get immune to it.

WAS taking v high doses of Vit C with no effect but have just read on the Vitamins bit of this health board that if you take large amounts of Vit C, your body expects to get that amount every day so if you dont take a dose, you get a cold! Am just trying to eat more fruit instead.

Have started taking Astragalus...a herb for chronic viruses and weak immune systems!

I also agree with what you all say about Docs not knowing a thing about Inner ear disorders. Very depressing!

Keep smiling All.

xxx

While I am waiting for my MRI tests (terrible feel), I keep reading up about all kinds of symptoms (probably shouldn't).

The ones that persist in my case, are mainly the lightheadedness, dizziness and most importantly, this thick pressure on top and in the back of my head.
Regarding this last symptom, has anyone else experienced it for a long time as part of their inner ear disorder?

It really worries me sick - and everytime I wake up, I pray it will not be there, but it still is.
It is not going away.

It is not very severe headache, it's more like an even and constant pressure (moderate) on top and back of head. It's like a moderate grip that it's there 100% of the time.

And yes, foggy eyes, foggy head, disconnected feeling.

Please tell me some of you have experienced that "head pressure" I am describing...

Ruth and Emsybobs,

Thank you so much for responding to my mail, just to hear that you are feeling exactly as I do is massively helpful.

Syracusa,

Yes, as it happens I did for a while with this experience intense pressure in my shoulders, neck, particularly the right side - that ear has always been worst, and also the back of my head, intensely around the base of my skull. Interestingly a lot of sufferers of vestibular disorders have back, and by extension, neck plus head muscle problems. A vestibular therapist on another dizzy board wrote a mail about this. The combination of trying to cope with dizziness which makes you clench your muscles in a certain way to combat the dizziness and also the, as you have seen from my posts and others, anxiety that accompanies the symptoms, which makes you tense up, can cause these problems.

I eventually told my acupuncturist about this. She explained how the back/shoulder muscles all extend up into your skull. Like you, the pressure on the bottom of my skull was really, really scaring me. She put aside the acupuncture needles for a while and did some deep chinese massage on my shoulders and up on to the back of my head. That, and the fact that I sort of started to think it might be anxiety related, so did some deep breathing, tried to relax my head and shoulders etc, meant it went away.

You are in the very early stages of having this, they are the absolute worst. I wasn't joking when I said that the friend of a friend I was put in touch with who had labyrinthis was a life -saver at the beginning. The symptoms were so frightening, I was terrified, and like you spending a lot of time looking up scarey symptoms on the internet (you're right - v. bad idea - I drove myself half mad with this.) He told me that he had been scared out of his wits to start with, which is why he was so keen I got in touch with him so he could be helpful.

I know it's so, so hard, but try not to worry. Although if you are worried do write about it here, this is what this message board is for, you don't have to suffer alone. If you can afford it, book a massage, get them to concentrate on your shoulders and back of your head.

All the best,

H.

hbep,

Thank you so much - it is very sweet of you to have taken time to write a longer reply. I really appreciate this.

Right now I am in such a vulnerable state of mind - that I keep telling myself how incredibly grateful I am going to feel if my MRI comes back 100% normal; and how I will never DARE again to even suggest that I don't have a 100% blessed and woderful life, which we often forget about when our health is intact and we just take it for granted.

In those kind of times, it is so easy to "make room" for new types of worries - such as "why am I not making tons of money after so much education", or "why can so and so have such a huge house and I can't?", or "why did so and so get to do her PhD while not working and I have to teach my way through it", "why don't I live in an "European" type of city instead of an American suburb" etc, etc.

It makes me sick to my stomach now to think that at times I allowed myslef to have that kind of thoughts when I was healthy and fine.

I have the sweetest and most caring husband in the whole wide world, a secure life, and a healthy family. Why didn't I see how incredibly fabulous I had it before I got this thing?
I feel enormously guilty now and I am afraid I will get punished for having "sulked" often about what was NOT right with my life instead of what was right.

I am sorry for spilling all this here but I am so messed up emotionally.

I also have read that vestibular neuritis (if this is what I have) is often caused by a herpes type of virus (the same kind that causes cold sores). I am not sure whether this is a coincidence or not, but on top of that viral infection that apparently started the whole thing, I remember having a cold sore on my upper-left lip a few days ago that disappeared very quick; this morning, another one appeared on the right corner of my mouth.

Could this be any indication?...

At this point, if I don't have a tumor - ANYTHING else will be fine with me.
Just to know that it will go away, even if it will take a long time - I am prepared for the long road.


Thank you so much again - and I apologize for being such a whiner and a major cry baby.

I also find myself looking on the internet and getting myself worked up!

I just want to vent my frustrations and air my view that Labrynthitis is horrible! I hope I will never experience it again once this all goes away! It has also made me so run down and tired. Noone (apart from you lot) understand dizziness - it's such a strange thing!!!

There, I feel a bit better now!

Syracusa

As someone else said earlier, you are in the very early stages of this virus, and yes, it is terribly scary. I am into month 5 and I promise it gets easier. The ENT told me the other day that even 5 months is short for this type of disorder. Hang in there, and try and stay positive. It has helped me. The early stages are terrifying but they do ease to the mind-numbingly, endless dizziness, which on the up-side is easier than the initial stages! Get yourself to a vestibular therapist ASAP to get some exercises. Your brain needs to learn how to cope with the damage that has been done. Exercises will speed up the process.

Syracusa,

No need to apologise for sharing your fears - we all need to to that at times.

Hmmmm - on the vestibular neuritis/cold sore issue - all I can say is that I asked the consultant I have only so far seen once about this. I had shingles as a child - also the same virus as cold sores, and thought this might be connected. He said generally people who get this virus in their ears would also be suffering from bells palsy (spelling?) the thing where half your face is paralysed for a while.

Yes, know just what you mean about not knowing how good you had it. If there's one good thing that comes out of all this it's that I may end up, if ever well again, worrying less and enjoying all the good things I have more.

Well...now this morning i found a relatively painful cold sore or something like a "boo-boo" right in the back (left) of my throat. If I say "Ahh" in the mirror and keep my tongue to the right, I can see it very well. It's almost like a big pimple that it's just emerging - only that it is placed in the back of my throat.

NOW what? ...

Syracusa,

I'm afraid I've no idea about that - read up a lot on ears but beyond that I'm not very informed. Possibly just the beginnings of some sort of throat infection - you're not well and v. stressed, so obviously you're more prone to getting infections at the moment. That would also explain the cold sores. Sounds like something you should run by your ENT doctor, I'm guessing you'll be seeing them again once you've had your MRI results. I get the impression they are better with things they can actually see, rather than things they can't - i.e. the inside of our ears.

I've had the same problem & thought I was going to go absolutely crazy. Its a "ligtheadedness" or a disconnectedness feeling like being in a dream state. Its also wierd that it seems your perception of time (especially past events) is thrown off. Has anyone else felt this?

Its happened to me off and on for about 9 years & always seems to go away, but its very distressing when its present. Its happened about 5 or 6 times. The longest I had it was for about 1 month. Its been bothering me again for the last week. It seems to be present along with a sinus infection or a dull sinus headache behind my eyes. Could this be eustacean tube dysfunction? My ears still pop, but the lightheaded feeling does not go away. I felt a little better this morning but then noticed a wierd sound in my ear like sandpaper rubbing together when I ate.

One Dr. put me on antbiotics about 1 week ago & said that I had fluid behind both ears. He also gave me decongestants. My head was so stopped up that I could hear my sinuses "groaning" or "creaking" at night when I layed on one side & then turned over. It didn't get any better, so I went to another Dr. & he said that the decongestant (Entex) would only make things worse by gumming up all of those nasal secretions. He told me to stop with the decongestants & start with guiafensin (sp?) which would loosen up the mucus in my head. He also gave me a steroid shot and said to take Nasonex. Sure enough, I've had more post nasal drip, but I still have the foggy headed feeling like I'm a little drunk or something. Its awful. Any suggesions out there? Its maddening not being able to focus.

Do your ears still pop when you have eustacian tube dysfunction or are you unable to hear your ears pop at all? My ears will pop when I swallow, so I'm wondering if it might be something else. Do I need to ask for a cat scan of my sinues?

I just want to have this foggy "unreal" feeling to go away. Any suggestions or do I just have to wait it out. I've seen other posts where people have had this for months at a time.

My MRI came back normal. At the moment, I think I am the most grateful human being in the entire world.

...
The fact that my head still feels funny, lightheaded and still a little dizzy - doesn't even seem to matter anymore. It's weird how an experience like this can humble you to the ground...

The next step is to see an ENT so that I get a more clear diagnostic (beyond just "viral infection").
Thank you so much to all of you who wrote messages of support while I was waiting for the MRI. I am trully grateful.

It's nice to see other people vent off their feelings. I am not alone http://www.healthboards.com/ubb/smile.gif. I also got very scared by doing research on the net. All these horror stories. People never getting well!! I even stopped looking for a while because it was too depressing.

Syracusa, don't worry to much. By what I've been reading and what I've experienced myself, I'm pretty sure you don't have a deadly disease. I had an MRI and everything was normal. I'm not a doctor, but your sores could be due to stress. I know that my sister-in-law developped a lot of sores in her mouth because of stress.

Syracusa

So so happy for you about the MRI - it's brilliant that you've now got the peace of mind of knowing for definite that it's ok.

Adam,

The perception of time thing - hmmm - don't know exactly - I do know that when in this foggy/dream like state I can barely remember what I did yesterday. It kind of makes sense I guess that if you feel spaced out/drugged/drunk and all the other terms people use at various points to describe this horrible, horrible feeling, then your perception of time will be off. I have experienced so many disgustingly weird cognitive sensations with this condition, I think they are probably similiar but also a bit different in each case. ( I think I probably have ETD but no definite diagnosis yet.)

I have also experienced popping and cracking and draining sounds. As for whether this is ETD or l'itis, dunno. I think with ETD you will get some flow of fluid in and out of your ears, so they probably can still pop. I guess it's just that, that flow is at times interrupted and they get blocked.

Adam,

Forgot to say, I'm afraid I don't have any suggestions as to how to make the foggy feeling go away. Wish I did. Apart from time. I have had this 6 months and it is much better now than it used to be. It sounds like yours comes and goes much more quickly - probably related to your sinuses, so hopefully you won't be in for the long haul.

Speaking of the "foggy" feeling: I am really curious as to what exactly people experience, because I think that today, my dizziness got slightly better towards the end of the day (not sure whether it is an actual physical improvement, or simply a mental lift from knowing that my MRI is normal);
YET the foggy feeling increased slightly.

To me, the "foggy feeling" is not only that I feel kind of "off" and disconnected, but it's also having "hazy eyes".
Almost gives me the sensation that I am just about to have a "vision" problem.

I say "just about to have" because it doesn't quite get there. Despite the hazy/foggy feeling over my eyes and head, I still CAN read, letters DO NOT overlap, I DO NOT have double vision, etc...(like an "ophtalomological problem).
And yet something still feels "blurry" and not "normal" in my eyes.

Especially in the evening...it gets to the point where i feel like I am getting a few tiny ants in my eyes and it's busy and tiresome there.
Or something like that.

Very vague, very subtle, very hard to describe - yet I KNOW that these are not my usual eyes and my usual way of "seeing".

It was the first symptom that set in (a week or so before I even got that viral cold) and it is driving me nuts.
I could very well go to an ophtalomologist to have my eyes checked (after all...having gone to all these doctors and spent all this money...what's one more, right?)
...Yet i feel it would be a waste of time, because it doesn't feel like I am losing my vision (needing glasses or anything); it's more like some haze is getting in the way of my eyes doing their regular job.

I know people mentioned "foggy head" (well...that too), but nobody seemed to have mentioned their eyes feeling funny. This "eye haze" is probably the hardest symtom to describe from all the ones mentioned here.

Do you have any of that?...

Yep my eyes have been weird. I kind of feel myself straining even though my eyesight is normal and they feel almost a bit "stiff" especially when I move my head up and down which makes the dizziness worse.

Yup, have had problems with my eyes too, all the way through this. Like Emsybobs, a definite sense of them being strained. Sometimes things were dimmer than usual. Weird, hard to explain. Also, have worse vision in one eye than the other, normally I don't need glasses, one compensates for the other, but with this I could suddenly feel a weird sensation of unequal balance btwn one eye and other. Also depth of field probs. I wracked my brains for ages as to what the hell was up. Worked out, with a bit of research etc... that as someone once said on this board, balance is a combo of muscles, eyes and ears working in tandem, so when one of them is off, namely your ears, your eyes have to work harder, get strained and confused and start doing weird stuff.

Something like that anyway, Hopefully you get what I mean, not feeling very articulate today LOL.

Roll on the day I am done with this ear horror, it can't arrive fast enough for me.

Syracusa, I'm happy that your MRI is normal. I guess we wrote our messages at about the same time, because when I wrote my response, your message about your test results wasn't there.

Yep, I know exactly what you mean about the eyes. It's like my vision is fuzzy/cloudy, especially when I move my head around. The more objects there is in a room, or when I look in the pantry for something, the fuzzier is my vision. I had my vision checked and everything was ok.

[This message has been edited by MPaiement (edited 02-11-2003).]

[This message has been edited by MPaiement (edited 02-11-2003).]

Hello... I had exactly the same kind of probs with my vision when I had lab 2 years ago, but this time my eyes have been unaffected.
With regard to the spacey feeling - it now seems to be better later in the day and worse in the mornings - has anyone else noticed a pattern where certain symptoms fluctuate during the day?
Still got the persistent imbalance feeling, but the bad dizzy episodes definitely getting less and less. Also less 'viral' though still having body temperature problems!

Ruth
xxx

Hi Ruth,

I tend to feel worse in the evenings - but the symptoms do fluctuate all the time.

Syracusa,

Initially when my dizziness started to improve I thought my brain fog was worse. I realise, for me, it wasn't, it's just that because I was lezz dizzy, the brain fog became more apparent.

I have no patterns at all. Sometimes I feel better in the morning and other times I feel better later in the day.

I always feel worse in the day when I am more knackered...

The pattern I've noticed in the past few days is that I get very foggy-eyed + headache and dizziness during the day, from lunch on, especially when there's peak activity. Even now, when i am typing, i can barely see the computer's screen.

It is really bad because I can't function right, especially when I have to go teach class in front of so many college students.

I went to see an ENT today but I might as well not have gone. I had an audio exam (yes, thank you, I knew I was not deaf). Then the doctor looked into my nose and
ears, and said it was probably from the infection and that I should leave it alone and take nothing. He said the virus was gone but these may be the lingering effects.

He seemed to be more interested in my "social demographics" such as am I married, where I am from, how long have I been in the US, where does my husband work, and how do I pronounce the name of my country in my native language.

Yeap. That helped. Also helped my pocket feel 180$ lighter, since the Insurance company i am having to deal with now might as well be called the "Insurance Company from Hell".

Oh, by the way...did i mention to all of you guys from England (with NHS :-)) how incredibly bad I hate the US health care system - which is run by businessmen (very greedy type, at that), not doctors?

If not, there you go, I mention it now: THE MOST HORRIBLE CONCEPT EVER INVENTED BY A PERVERTED HUMAN MIND.

Firstly, I made a typing error before and meant to say I feel worse in the evenings - when I am more tired.

The NHS system is far from great either really to be frank! But I don't know much about the US one - sounds pretty horrendous!

The fact that Doctors and ENT people are pretty unhelpful and a lot of the time, pretty clueless, seems to be a universal problem...

Like to add my five pence worth on the doctors/healthcare rant. You're right, Syracusa, the healthcare system in America is a disaster. Although, like Emsybobs, don't even get me started on the system over here. Ostensibly there is free healthcare for all - if you want to wait A HUNDRED YEARS for an appointment, and then another hundred years for a follow up appointment. Most people get so desperate they end up paying for stuff anyway.

When I first started feeling dizzy, I trooped off to the emergency room, certain I must have a brain tumor or some such thing. I remember quite clearly how on that bright afternoon everything was dancing around in front of my eyes, like my friends striped shirt who I ran into on the way in. I think by far the most disturbing symptom is that so called brain fog, and I'm not at all sure what it comes from. I am skeptical of the 'brain to busy staying balanced' theory to make me so foggy. However, when I did get in the ER, I have to admit I was impressed with how thorough they all seemed. I live near a teaching hospital, so I was seen by many people, some medical students, some residents, nurses etc. Not that they gave me any diagnoses, but they really did seem to care. And the insurance company did pick up most of the bill, eventually.

MSG,

As I have now vented on this site a number of times, I too find the brain fog infuriating. At first it was unbelievably bad, now that I am less dizzy, but still experiencing ear pain, pressure etc... it is less bad but there all the time to lesser and greater degrees.

Although most of us talk about it, and refer to feeling slower, or suddenly stupid, no one has given an in depth description of what it really feels like for them. The details of how they experience brain fog, if you see what I mean. I, for one, would find this immensely helpful and will be happy to share my experience if anyone else is interested in doing so.

I'll do my best to describe it as good as I can.

To me, It feels like I'm in a very vivid dream like state 24/7. I feel like reality is very far away. Sometimes I feel so out of place just doing what I normally do, Like I don't belong here in this body, I have to remind myself from time to time that this is me thinking these thoughts and these are my hands typing this message. Its a feeling of being unreal, Out of sync and out of touch with everything and everyone. I often find myself at a loss for words, Or losing my train of thought or forgetting how to spell words that are normally right their with no problems. To me, It feels like a switch in my head has been turned off, Like their is some sort of energy that is missing, Like their is a haze covering the world as I used to know it.

Thats how it feels to me...

I'm hoping after I see the ENT that shortly after things start looking up for me, These past two days seem to feel worse than I usually do, Causing me anxiety and paranoia. It seems like I've been losing my balance alot more lately, I don't fall down, But I do need to shuffle my feet so I don't fall over, Or catch myself, Pushing myself back up from a wall or whatever.

I would also be interested in hearing other peoples descriptions on their clouded head feelings. As it may help me and others cope better.

Good luck everyone.

PS: Great idea hpeb =)

I'll do my best to describe it as good as I can.

To me, It feels like I'm in a very vivid dream like state 24/7. I feel like reality is very far away. Sometimes I feel so out of place just doing what I normally do, Like I don't belong here in this body, I have to remind myself from time to time that this is me thinking these thoughts and these are my hands typing this message. Its a feeling of being unreal, Out of sync and out of touch with everything and everyone. I often find myself at a loss for words, Or losing my train of thought or forgetting how to spell words that are normally right their with no problems. To me, It feels like a switch in my head has been turned off, Like their is some sort of energy that is missing, Like their is a haze covering the world as I used to know it.

Thats how it feels to me...

I'm hoping after I see the ENT that shortly after things start looking up for me, These past two days seem to feel worse than I usually do, Causing me anxiety and paranoia. It seems like I've been losing my balance alot more lately, I don't fall down, But I do need to shuffle my feet so I don't fall over, Or catch myself, Pushing myself back up from a wall or whatever.

I would also be interested in hearing other peoples descriptions on their clouded head feelings. As it may help me and others cope better.

Good luck everyone.

PS: Great idea hpeb =)

Hey Kapheen,

Thanks for your answer, which I really appreciated. I’ll try and answer my own question as best I can.

When I first got this I suddenly felt weird, like someone had stuffed something in to my ears, which locked them off. Simultaneously I felt disconnected, like I was interacting with the world from inside a bubble, and that I was at one remove from my own thoughts. It felt right from the start that if someone could remove whatever was in my ears my head would clear. I think this was the beginning of the inflammation in my eustachian tubes, which locked them off, blocked the passage of air/fluid in and out of them, and conseqently made me feel locked off.

After a few weeks, along with the onset of profound dizziness, the tinnitus, pain/fullness in my ears increased, and so did the sense of disconnection and mental fog. I have read references with vestibular disorders to ‘slower mental processing’ and that’s pretty much what it felt like, my brain had slowed down. Reading, having conversations, watching television, I was accessing information more slowly. In order to take things in, I had to fight through a mental fog to process it. Losing my train of thought, being unable to think clearly, forgetfulness, are all familiar to me too.

I started to experience a revolting sense of identity loss. It’s hard to explain this. I think it’s partly the sense of disconnection just made me feel so spaced out it was completely disorientating. Also, I think, the mental fog messed with my memory. We understand ourselves through the memories of experiences we’ve had, and thoughts/opinions we’ve formed because of them. Because of the mental fog, I could no longer access my memories in the same way, consequently when others asked me, or I asked myself, what I thought about something, I was cut off from the very memories/thoughts/ opinions that make me, me. Another thing I have read about cognitive impairment in vestibular disorders is the phrase ‘people lose their sense of internal certainty.’ I think this is what happened and still happens to me.

As the months have passed and my ears/dizziness have improved, the cognitive problems have improved. Although I still feel disconnected, and I still can’t pull my thoughts together in the same way, the fog and sense of disconnection are always there, they are just less profound. After 6 months it is really starting to drive me nuts.

Please let us know how your appointment with ENT goes, Kapheen. From what you've said before out ear problems sound v. similiar. I don't know if you have already, but try putting Wendy222 in to the search engine on this board, and read up on her experience of eustachian tube dysfuntion. I could have written them myself they are so similiar to my experience, and I'm guessing maybe to yours.

I have also had the horrible 'disconnected' feeling with this, which is slowly improving. I explained it to the ENT as feeling like I was under water. Would also describe it as like you're in a bubble - in fact, went to a friends for a meal a few days ago and felt very much like this. No dizziness whilst I was there - just felt like I wasn't quite there(?) Sort of removed? Felt I really had to concentrate on everything - whereas normally I would be on automatic pilot, I guess. I also agree that if there wasn't so much congestion in my ears (right ear, in particular) that this feeling would go away. Having said that, feeling like a weeble also adds to this spacey feeling!

Someone described it to me as feeling a bit like your head is a helium balloon, which I think is a pretty good description of that dream-like feeling you get.
So hard to explain it to people, though.

Ruth
xxx

Hi, I know exactly what you all mean. I find that with the dizziness comes a feeling that my mental processing is slow. It is kind of like I am really "spaced out" and not alive somehow! It is all very surreal.

My other symptoms consist of a constant inbalance and a weird dizziness when I move my head. Looking left, right, up or down makes it all worse. It's kind of as if I am lightheaded and also just like I have been spun round and round. It is most noticeable in the dark or crowded streets/places.

Yes, all those things sound familiar. I have experienced a sensation of being disconnected from my hands also, sort of hard to describe. Has anyone ever felt that?

Yes, when I first got this also had the sensation of my hands not belonging to me. Made putting toothpast on a toothbrush a whole new experience! This can be a symptom of anxiety - the point where this happened to me I was v. stressed about having this, which may have meant I was experiencing anxiety symptoms brought on by the ear disorder. Although I did read a fascinating thing that said that the part of the brain which tells you that your limbs/hands etc belong to you - begins with P - can't remember exact name of it, lives above your ear. So when you get inflammation in your ears it can press on that part of the brain causing these hands not belonging to you sensations.

I have experineced most of the symptoms mentioned above...but i also seem to have a problem with my eyes.

It's not just "brain fog" but also "foggy eyes".

I could go get my eyes cheked, but I know 99.999999% that ti is not an ophtalmologival problem - because I CAN read letters.

It's just that soemtimes it feels like I've got some "mucus" in my eyes that makes everything look in a state of dream; or sometimes if i move my eyea in a certain direction, one part of the eye gets literally blurry and then I have to sqeeze my eyes a few times to havr that blurry spot go away.

It is extremely weird especially because because i haven't heard many people here talk about eye fogginess - only "brain fog".

Hi Syracusa,

I haven't experienced the foggy eye thing in a big way, just a very occasional sense of them being foggy, Although, since I got this, especially when in a place with lots of visual stimulus, I am just seeing differently, the best description I can give is it is like I am looking at things from behind glass. Although some other people on here have definitely mentioned the foggy eye thing.

If there was something ominous causing your eye probs it would undoubtedly have shown up on the MRI. Probably worth having your eyes checked, but I'm guessing that you're right, it isn't opthamological.

OK. I think I am losing my minds with frustration.

I continue to be extremely grateful and incredibly relieved for the fact that my MRI came out good.
However, I must say that I am slowly getting desperate again simply because of my situation.

Dizzy, wobly, disconnected, weak, foggy-eyed, unable to function normally, not myself.
How long am I supposed to be able to keep going like this?

Doctors seem to have no clue. I can't stand hearing again the word "cold" or "infection" because a mere "infection" doesn't just leave you crippled like this. Regardeless.

They just say "come back if you don't feel better in 6 weeks". But it's already been 6 or more weeks. The ENT diagnosed me with vestibular neuritis but he didn't run any specific tests to know that this is what it actually is. (The neurologist ordered the MRI).
It was more like I suggested him the diagnosis, after telling him what I read on this forum. And then he said, yes, this is what it probably is and that I shouldn't be taking anything, it will just go away on its own. He also said "we could run some "dizzy" tests but I don't think it's necessary".

"Go away on its own??????" This doesn't seem to be going anywhere. And I am weak like I've never been before.
...and what if it's not vestibular neuritis?....

PLEASE PLEASE PLEASE, does anybody know any home remedies, naturopathic whatever, that would at least speed the recovery and alleviate these symptoms?
Anything for the foggy-eyes, dizziness, or simply this whole un-real state of being?

I am really desperate and very depressed...


.

For what its worth, I found the following helpful, although needless to say, what you 'have' may be entirely different from what I 'have'. Tofrinil is frquently recommended for L, but the side effects, dry mouth, constipation, etc, can be unpleasent. It did help me. I found aspirin helped also. Have you tried any Klonipin? I took this to help me sleep, and it seemed to settle things down a little the next day. And my own invention, was to eat raw horse radish. It took about two days to help. I guess I'm curious to know if any of these things help anyone else.

Do you mean horse radish from a jar in the supermarket? How did it help?

Hi Syracusa,

The thing that will undoubtedly most help you in the long run with VN or l'tis is vestibular rehabilitation exercises. Unfortunately an infection/virus - the common cold virus which you had preceeding this, can do this to you. The ear is a v. sensitive mechanism, when a virus gets in there it causes havoc, your balance nerves start firing off the wrong signals to your brain and your brain has to learn how to compensate for that. The dizzy tests might tell you if there is actual damage to the nerves in your ear/ears, but even if they know that, there are no drugs to aid recovery from this anyway, only drugs that people can take in emergencies if their vertigo/dizzies are v. bad. These drugs hinder compensation so you should avoid them if you can. That's probably why the doctor said there was little point in doing the dizzy tests, and I'm guessing at this stage it would cost you a whole lot of money without much return.

On this board there is a topic starter called 'l'itis, refrain from taking medication.' In there Jen wrote out a list of vestibular exercises given to her by her vestibular therapist - I would have a look and cut and paste them. Also, put cawthorne cooksey exercises in to a search engine and it will bring up the other exercises you can do. You are meant to do these exercises little and often, about 3 times a day. The effect is not immediate, you have to keep at it and eventually it pays off. They will make you feel worse before you feel better, you have to provoke the dizziness to give the brain something to work with, if you see what I mean.

Other than that I have been having acupuncture - I think it has helped in as much as it builds up your whole immune system. I have also been taking ginko biloba and a combined B vitamin, I can't remember the exact details but the general idea is they increase blood flow to the brain, help with inflammation and immune system. Magnesium is another possibility - I tried this but it seemed to make me feel worse, dunno if this was coincidental, but I stopped taking it.

I know getting this is shocking and frightening - but your symptoms do sound exactly like those of l'tis or VN.

Hbep,

Thank you so much, I really appreciate this.

Regarding the "dizzy" tests, I myself agreed with the ENT NOT to have them, simply because right now we are broke. We already spent more than our share on doctors (+ the MRI) and we don't even know yet whether the Insurance company will actually pay what they said they would pay.

My problems is that I get extremely frustrsted and depressed because of this sureal state of being. Sometimes it feel like this state is not curable and that this is who I've become. Somebody different than I was no longer back than December last year.

I would like to start an "alternative" approach to healing this problem, but i didn't know what exactly to take. I did hear about vitamin B complex, magnesium, and vestibular exercises. I didn't know about ginko biloba.
I will look inot those exercises and hopefully they will eventually help. ...

Sometimes though...I get so depresssed because of this whole thing that it feels like nothing is ever going to help.

Thanks!

Emsybobs:
I did eat prepared horse radish from a jar on toast, but then I got onto buying the actual root (I had to ask at the market because I didn't know which was it) and slicing it up and chewing it. I found some interesting sites by searching on 'influenza' and 'Horse Radish' It was funny because at that time I had been to see a homeopath who gave me argentricum nitricum or some such thing, and when my head cleared I thought it was from that. So I stopped eating the horse radish...and my head...(soup starter etc.,) well you get the picture. I promise not to mention it again.

I've been reading some of the things that eveyone has been posting and I too think I might have an iner ear problem. I have had pressure in my head for over 2 weeks now. The doctor thought it was tension causing it but it's been going on too long to be tension. I went to him yesterday because I could feel my ears getting sore. He did say that I had an ear infection and ordered an MRI of my head becuase of the pressure. It feels like a fullness in my head with a squeezing feeling periodically. I have some dizziness with it. By dizziness I mean that when I turn around or shake my head I feel that the room moves with me. When I'm still it doesn't bother me as much. Does anyone know if this sounds like inner ear problems? Would the MRI show an inner ear problem? I'm getting really sick of worrying myself to death about this. This happened one other time in November of last year but resloved on it's own after about a week and a half.

Thankyou MSG41 re: the horseradish. You made me laugh about the soup starter.

To the person who sent the most recent post...sorry cant remember your name as it have now gone onto this new page! It does sound like inner ear related to me. I also have the moving head and everything moving with it sensation. That is classic of ear problems. I think it should show on the MRI or at least the MRI will rule out more serious things. Good Luck.

Just a quick question for those of you going through the same thing as me with the inner ear disorder.

Yesterday I was at work with head phones on and someone was sliding a table across the floor and to me it sounded like someone screaming, It kinda freaked me out a little bit, Also last night when I was trying to goto sleep a friend was in my bedroom on the computer, He coughed and it sounder like a loud buzz or something like a alarm.

I'm thinking because my ears are messed up I'm interpreting sounds wrong, Have any of you ever experienced anything like this ?, Its just kind of weird and it scares me.

Thanks in advance.

Hey Kapheen,

I haven't actually experienced this, but I have read a number of references to people being unable to tolerate loud noise with an ear disorder. I'm guessing it's just yet another of the delightful symptoms that go along with all this horrible ear stuff. I also read about one person with an ear disorder who was interpreting visual info incorrectly. Other people would see a car driving along the road and swerving to the left then the right. She would simply see the car swerve to the left and keep going to the left. Her ears had so confused her brain that it was misinterpreting visual information. So I guess the same is possible with noise.

Please do let us know how your consulation goes at ENT. I for one would find it really helpful to know what they think it might be. As I've said before, I think our symptoms are similiar. Mine isn't for another 3 weeks yet, but I'll report back on it once I've been.

Hey Hbep-
Are you still doing the accupunture? Any luck with that? I always lol when I read your soup posts.

After having this a year, I've become very aware of my ears and the pressure and tenderness in my head. My hearing itself seems fine to me, although I definitely find loud noises to be intolerable. For several months I had a sort of pressure on the outside of my forehead,like someone pressing their fingers on it, which then went away. Anyone?

If I wouldn't have found a couple of things which help the fog, I think I'd be a total basketcase right about now. I'm the sort of person who always refused to take even a cold tablet no matter how sick I felt. All thats changed now and I would drink battery acid if I thought it would help.

Hi MSG

LOL - I know just what you mean about the battery acid. I'd chew on asbestos if I thought it'd get rid of this damn brainfog. I'm thinking of getting myself some crayons and a colouring in book to play with when the brainfog gets really bad.

I'm curious - how long ago did your dizziness go? Touch wood I seem to have recently got rid of mine. (6 months now) I still have most of the other symptoms but to a lesser degree - head in goldfish bowl sensation, plugged ears, sometimes when lying down at night pressure around ears and head, tinnitus, on and off pain in ears. And of course, my old friend, brainfog, which, although improved, is still driving me ABSOLUTELY NUTS.

Yes I am still having acupunture and I think it helps. It's no miracle cure but it is one of the alternative therapies that has got some medical evidence backing it up. It's been shown to help boost the immune system. I tend to need a bit of evidence of success or trials before I'll shell out money for an alternative therapy. Having said that, at this stage I'd let people dance around me in a circle chanting if they could convince me it'd help.

I was very interested to read Jen say that a friend who was cured of l'tis after a couple of weeks continued to have brainfog for a few months after. I wonder if it's just a question of waiting it out. That's why I'm curious how long ago your dizzies went. Also, are you doing the Cawthorne Cooksey exercises? I did them for a bit but then overcome with lazyness/not wanting to do my homework, I stopped. I am going to start them again. Basically I have heard that brainfog can continue if you haven't fully compensated for the dizzies - i.e. you can actually have stopped being dizzy but still need to push your brain to that last step before the brainfog goes. Just a thought, who knows.`

My favourite theory is that there is inflammation in my ears - I had a cronically inflamed lining of my nose a few yrs back, I think the same thing is happening in my eustachian tubes/ears. It was treated with a steroid nose spray and a v. short course of oral steroids. My gut feel is that until that inflammation is under control the other problems won't clear up. when I see the consultant in 3 weeks I am going to push hard for a course of oral steroids - see if they help.

I am also trying acupuncture. I wonder and hope maybe that is what has helped your dizziness to clear hbep? Has your off balance sensation with movement of the ahead now gone? Can you see marked improvement? Sorry, I am in need of some success stories at the mo.

xxx

I made a post a week or two ago and since then have had a CAT scan of my sinuses which revealled swollen membranes in the sinuses behind my eyes. It seems my dizziness comes when my sinuses start throbbing or hurting. They are not totally blocked but show lots of swelling from some "irritation" which my EMT said was a bacterial or viral infection. He said antibiotics & continued nasonex should help... I'm not sure if it has or not.

As to the "brain fog," I recently traveled to a western desert state & thought that it might help, well actually it got worse & the groaning and creaking in my sinuses which I hear when I sleep came back. Also, the brain fog increased, so I think its definitely sinus related. For a while I thought that I had brain damage... I guess its just that paranoid feeling, but its clear that my memory is working since I can remember things OK... its just so hard to concentrate on every little thing... where are my keys, where am I going, what time is it, what am I doing next... etc. that its maddening!

I think the dry climate made things worse... it seemed to improve when I returned home & was able to sleep with my humidifier going next to my bed again.

Someone else talked about an "eye" blurriness or fog also. I have experienced this as well. Its very hard to describe, because its not really a blurriness to your vision, but rather its almost hard to focus or something... its very wierd. My EMT said that certain
sinuses go behind your eyes. Maybe when they get blocked or swollen that affects your eyes or optic nerve? who knows...

The best way to describe the feeling of "soup head" or "brain fog" is like when you have had a couple beers... a lightheadedness or forgetfulness like you can't focus. Also, something that happened this morning seems like it happened days ago.

I read that clortrimeton (over the counter) had helped some others with allergies & this bring fog problem -- check out posts on the allergies board. I've noticed that after I work out or exercise very hard that it seems to get a bit clearer... Has anyone else noticed this, perhaps that promotes sinus drainage... I'm not sure.

Has anyone heard of gluten allergies. A friend of mine told me to check into this. His wife had continuing sinus infections & did away w/ gluten in her diet and improved significantly...

Just wondering...

Hey Emsybobs,

As you will probably read under one of the other topics I was feeling a bit dizzy again this morning BUT am not bad this afternoon. I seem to have to watch how much I push myself - if I do too much, which I probably did this weekend, it gets worse. Also it's the old time of the month for me in 5 days so things are always worse.

To cheer myself up, and now, hopefully, you also, I wrote a mail to my friend who had l'tis for a year. He was very, very ill with it. The first 4-5 months were total hell for him, he told me he often thought about heading for the nearest cliff edge. I don't get the head moving dizziness thing, but I think he did. I asked him whether he is still pretty much well. He said yes, he could rely on not being dizzy 99% of the time and only got slightly lightheaded if he really overdid it. Cheering news. Even though I was a bit dizzy again this morning and obviously, still get a lot of other symptoms, going in to my seventh month, I am definitely better than I was. In the first 4-5 months I used to get so dizzy and nauseous for hours on end I had no choice but to lie on my bed.

Obviously I'm frustrated that I'm still ill after all this time BUT going by his experience and now, hopefully, mine, it does get easier to cope with as the months go by, it will get easier for you too. When you're in the middle of the worst of it, it's hard to imagine how it could ever change, but it can and does.

I just wish I could say I was completely rid of this damn thing, but I'm not. Although my friend is, so there's hope for us all.

THANK YOU. I never had the severe had to lie down thing really, it's been quite constant. Well, saying that it is a lot better than it was at the start. I can see improvement. I am like you in that if I push myself, it gets bad, if I sleep a lot, it is far better.

Thank you.

Hi Hbep, and others,
Interesting to hear of the accupucture helping. I thought of trying it, and am more encouraged now. When I first became ill, I had been sandblasting paint and thought I had poisoned myself with lead. I barked up that tree for some time. It was just a raised anxiety level and an inability to sleep at first. Yes Adam, I thought I must have brain damage. (one of the more favourite organs of my body). Then that sort of went away, and I got a blood test and generally forgot about it. Then one day I started out of the blue to have summersault spells, several times a day. Then the tinnitus, and I found myself unable to remember how to spell simple words, and noticed I really needed to concentrate to drive the car. I move around alot in my work, which I have been able to continue to do, because I haven't been really too dizzy. I install flooring, which doesn't require much thought, and possibly getting up and down all day long may have helped the dizzies, or thats just not how it presented with me. I haven't done those excercises. I've also had lots of practice stumbling around drunk, so who knows. But I haven't been dizzy for some time, and it was never a big thing with me. I was starting to take Rolfing training at that time (a type of bodywork), my instructor suspected that my symptoms were caused by the cranial manipulation, although I suppose it later became evident that I was just a flake. I also considered that I was in the next stage of human evolution and was going to become one of the X-men, that however has yet to pan out. I'm totally down with the inflammation theory, when I first had my 'brain tumor', I found aspirin to be very helpful, it of course reduces inflamation. I have also considered that I already have gotten over the bug, the news just has yet to reach my ears. (a little wishful thinking there) I did have a week of clarity back there, and was greatful to have my brain back, because I have worried its gone for good. http://www.healthboards.com/ubb/tired.gif

Originally posted by Jen30:
Ruth
Yes, you made me smile! I'm going through a good phase at the moment and I feel on top of the world! Having felt this before however, I'm more cautious about thinking that this is the end of it all because it's all come back before. I'll enjoy it while it lasts!
Still dizzy 24/7 however and certainly don't feel my normal self. I also yearn for that healthy, normal human being I used to be. Hey finally someone with the same symtoms as me.Have you been diognosed with anything,how long have you been having this problem,Me about 6 months,I hav'nt been diognosed with anything yet,I'm thinking about going to the clevland clinic,I think it's my inner ear but my ear doc.dont seem to think so.I started getting dizzy then it went away for 2 weeks,then my dizziness came back and my right ear started filling funny,then started ringing and then my left done the same.Sometimes I can go to work for 3 weeks (I dont drive my wife takes my)without missing a day and sometimes I cant go for 2 weeks at a time.PLEASE ans.my questions I dont know how long I can take this.P.S Ive only felt normal 2 days since all this has started,Thanks

Hi Eric
Sorry, I am as frustrated as you with this thing. I've been diagnosed as having vestibular neuritis as a result of a bout of labyrinthitis (inner ear virus). I am also in month 6 and starting to think that this is how I'm going to be for the rest of my life. Up until the last week I was managing to stay positive, even through the bad weeks, but this last time was bad. If you read back through my messages you will see that I've been to see a vestibular rehabilitation specialist and I have exercises to do which I have been doing 3 times a day since the 17th Jan. I guess they're not working...yet! Recently started accupuncture, but am too afraid to get excited about anything working, even though the Chinese doctor reckons he's treated this before and should have me cured in 3 - 4 weeks. I wish. I have managed to go to work throughout this whole ordeal except for 6 days, which I have taken off (in the beginning stages). The reason is that I have a desk job and can pretty much 'pretend' I'm working some of the time when I'm feeling like an absolute zombie. The hardest is keeping a happy face at work. I've stopped talking to people about it as I'm sure I'm boring them and they don't understand what I'm feeling. My husband and my mother (who lives in another country!) are my only support. God this sounds dismal, but I'm really not feeling too cheerful about this at the moment. My life has altered from being a very energetic, get up and go kind of life, to one where I am housebound and a lot more antisocial. I just don't have the energy to interact sometimes. So, this is a long winded way of telling you that I don't have answers. The one thing that keeps me going, however, is that I know of others who have had this and it has gone away. We can only hope and pray....

Hi Jen,

I am so sorry you are feeling so disheartened. I know how alone this condition can make you feel.

I know when I'm feeling really beleaguered by something I'm always keen to know there's something further I could try. I know you've already shown immense resilience and have travelled a long way to see a vestibular therapist. I'm just thinking you wouldn't have anything to lose by seeking out further advice at this stage. From what I remember, you saw a regular ENT doc. Maybe it's worth seeking out a neuro otologist. They have done an extra 3-4 yrs study on top of general ENT medicine on the link btwn ears and dizziness. I realise the vestibular therapist you saw has a Phd in this area, but it seems you really do have nothing to lose and everything to gain by also being checked out by a consultant neuro otologist. They could run ENG and caloric tests which would tell you if there is definitely damage to the nerves in your ears. It may prove to be a waste of time and they would simpy tell you again what the vestibular therapist said, that time and the exercises will do the trick (whatever happened they would get you to do VRT first anyway) but then again they may have other diagnostic suggestions and ideas for things that could be done to help.

I realise you may not want to do this now, your therapist did say the exercises would take a long time to work, but I do think it's worth knowing about neuro otologists and having it up your sleeve as a fall back option if this continues to be a problem in the next few months. A lot of people don't even know neuro otologists exist - it's a very specialised field. My gp (family doctor) didn't know what one was !! By the way they definitely do exist LOL - my friend who had l'tis saw one at of the top ones in London called Rosalind Davies - National Hospital for Neurology and Neurosurgery. I know I've mentioned it before, but it's worth mentioning it again, he has now recovered - there is light at the end of the tunnel.

[This message has been edited by hbep (edited 03-02-2003).]

Well I finally had my visit with the Ears Nose and Throat specialist, He didn't see any fluid build up in either of my ears, My hearing tests came back normal and the other tests they ran came back basically saying that their wasn't any fluid in my eustachian tubes either. He had no explanation for my symptoms.

Now I'm confused and wondering if it may be something more serious, He did give me some Nasonex nasal spray and another appointment in 6-8 weeks to see if my symptoms have decreased at all by then, I hope to god that they do.

I have a appointment with a neurologist in a few days, Maybe he can give me some sort of incite.

Hbep, what did Rosalind davies say to your friend? Did she speed up the process in any way? Recommend exercises? Is she located at a private hospital?

Originally posted by Jen30:
Hi Eric
Sorry, I am as frustrated as you with this thing. I've been diagnosed as having vestibular neuritis as a result of a bout of labyrinthitis (inner ear virus). I am also in month 6 and starting to think that this is how I'm going to be for the rest of my life. Up until the last week I was managing to stay positive, even through the bad weeks, but this last time was bad. If you read back through my messages you will see that I've been to see a vestibular rehabilitation specialist and I have exercises to do which I have been doing 3 times a day since the 17th Jan. I guess they're not working...yet! Recently started accupuncture, but am too afraid to get excited about anything working, even though the Chinese doctor reckons he's treated this before and should have me cured in 3 - 4 weeks. I wish. I have managed to go to work throughout this whole ordeal except for 6 days, which I have taken off (in the beginning stages). The reason is that I have a desk job and can pretty much 'pretend' I'm working some of the time when I'm feeling like an absolute zombie. The hardest is keeping a happy face at work. I've stopped talking to people about it as I'm sure I'm boring them and they don't understand what I'm feeling. My husband and my mother (who lives in another country!) are my only support. God this sounds dismal, but I'm really not feeling too cheerful about this at the moment. My life has altered from being a very energetic, get up and go kind of life, to one where I am housebound and a lot more antisocial. I just don't have the energy to interact sometimes. So, this is a long winded way of telling you that I don't have answers. The one thing that keeps me going, however, is that I know of others who have had this and it has gone away. We can only hope and pray....

Thanks for the reply. Does the doctor have you on any kind of medication? How do they know vestibular neuritis is what you have? Are they just guessing or did it show up in a test they have done on you? The ear doctor has tried me on neurontin 900mgs a day, tofranil 10mgs a day, medrol dose pack(steroids), valuims. The neurologist has me on neurontin 100mgs a day and paxal 20mgs but I only take 10mgs because it makes me more dizzy. I stopped taking everything because the I had a spell last week were my whole body went numb and I had to go to the ER and the doctor said it was either the medication or a panic attack. I have had a MRI and ENG testing , hearing test, I have lost some hearing in the right ear. Lots of blood work. They still haven't diagnosed me with anything yet. He asked me if I have anxiety problems. I told him no, but now I think I might do to the six months of staying lightheaded 24/7. Can anxiety cause your ears to ring? Do you know? Have you lost any hearing in either ear? Doctor don't think I have inner ear infection because it only takes a 25 year old 3 months to run its coarse. The paxal 10mgs a day helped stop some of the ringing in my ears. Now it coming back since I haven't been taking it in about 4 days. Thanks again for your reply. It really helps knowing there are other people having simular systoms. Just haveing someone to talk to about it. There are some people that just don't understand what it feels like.

Eric
My vestibular rehabilitation doc actually diagnosed me after doing a series of tests in her rooms e.g. standing on a thick piece of sponge with my eyes open, then closed etc. She ruled our Meneires and BPPV this way. I have had my hearing tested and it is fine and no, I don't have any ringing in my ears (well, no more than I've had all my life. Have been concentrating on this, but the fact that I have to concentrate so hard makes me think I don't have the ringing!!) http://www.healthboards.com/ubb/smile.gif I have had a CAT scan which showed up clear - that was just to rule out infection - and I have an MRI booked for the end of the month which I'm seriously considering cancelling.
I was given Stemetil in the beginning to help with the dizziness, but the VT said to stop using them as they hinder compensation. Since then I've taken nothing except pumped myself full of multi-vitamins, echanacea and gingko biloba...obviously none of those are working!! I have recently started accupuncture but too soon to see if there are results. The VT said I had "youth on my side" in fighting this and I am 30, so you have more youth on your side!
Oh, and I'm investigating a new mouthguard to help with my TMJ. I have been a TMJ sufferer for years too and have read loads of articles on how this can be the cause of dizziness. Never had dizziness before now though and my gut feel is that it was the virus. The only other symptom I've ever had, other than dizziness, is sharp shooting pains in my left ear which come and go sporadically and are not bad enough to cause much alarm.

Eric
Sorry, can't comment on whether anxiety causes ringing. For the first time in my entire life I'm starting to feel depression...went through my entire teenage years without a bout and now this! Still not bad though. I think the support of my husband is what keeps me sane.

Hbep
Thanks for the info on the neuro otologist. I wonder if they have them in Australia? Interested to know what Rosalind Davies did to help your friend....

Hi Kapheen,

Sorry your ENT was no help, it seems, going by people's experiences on this board, that they often aren't. Although it's worth bearing in mind that just because he said there was nothing wrong with your ears doesn't mean there's nothing wrong with your ears. The otologist I have seen once told me that a tympanogram - the test for pressure in your eustachian tubes, isn't entirely reliable. It depends what the fluid build up in your ears is doing on the day they test. When I first had this some days my hearing was muffled and some days it wasn't. When I had my tympanogram it was clear, Wendy who after seeing 8 ENT's was finally diagnosed with eustachian tube problems and cured with grommets, had 3 tympanograms, all clear. Also I had major inflammation in my nose a few years ago, but no congestion, often people who get inflammation in there nose also get congestion, watering eyes etc... I didn't, I'm willing to bet the same thing is possible in your ears, therefore the tympanogram shows nothing as there's no fluid build up only inflammation.

Doctors aren't infallible and it does seem ENT has a higher proportion of unhelpful doctors than some other fields. I'm starting to wonder if it's considered the easy option and attracts the medical students who throw paper airplanes around and read a magazine under the desk during class. By the time they actually get to see patients, they think damn, I forgot to learn anything, better just use that old trick of saying there's nothing wrong with their ears and hope they go away.

Do let us know how things go with the neurologist, although I really doubt you have anything scary. I, like many others on this board, barked up the 'I have a brain tumour' tree for a while. Lots of people have MRI's - no one I've read about so far has ever shown anything with our symptoms. Then I moved on to weird degenerative brain disease - looked up loads of scary conditions on the internet, but then realised that although doctors do miss things, I think they'd have noticed if I had mad cow disease. Of course I still have scarey thoughts but for the most part, from everything I've read, I think there's something wrong with my ears. I'm guessing there may well be something wrong with yours too. I see the otologist again soon, I'm hoping he'll be helpful, but prepared for the fact he might not be. Guess I'll have to take things from there.

Have you checked out the allergy board? A lot of people on there have similiar symptoms to us, including the foggy head and spacey feeling sutff, an allergy can irritate your ears/sinuses, hence the cross over.

Hi guys... just checking in. Like you Jen, have had a rough week - 2 days of which I was a wailing woman! You know the stuff "I can't take one more day of feeling like this!!!..." But, then you realise you have to, because there is little choice, although am definitely interested in having a full head transplant, if they do them. I tell you, from the shoulders down, my body is really healthy!
Thanks hbep for the advice about neuro otologists - will definitely keep that in mind. Am finally going to the hospital for vestibular therapy next Monday, having waited 2 months, and hope they have a little more insight into what exercises will work for me. Have been doing exercises for the past six weeks, though, and they are not helping yet. Although everything I have read and what I've been told about VR is that it takes a long time. But what does that mean? 2 months, 6 months? Will definitely go armed with lots of questions!

Ruth
xxx

Hi Jen, Emsybobs,Ruth,

The reason I go on about the neuro otologist thing is because of the site that my friend with l’tis put me on to called dizzinews. This bloke I’ve mentioned before who runs a balance centre in the U.S.A, gives out advice on the site (His motives are purely altruistic – it is a non profit, non advertising based site run by a person who suffers from dizziness) This is the advice he always gives when people ask a non specific question about getting help with long term dizziness. I think he explains it much better than I did. I’ve cut and pasted it below.

When you have a chronic or recurring ear problem ( vertigo / balance / hearing / tinnitus / pressure / pain, etc.), you've seen the family doctor, neurologist and/or the general ENT doctor and they weren't able to help, often the best thing to do is to see a neurotologist or otologist. These are ENT doctors with additional training in the ear and its
connections to the brain, who subspecialize in the ear, hearing and balance. These are the super doctors for hearing and dizziness problems.

Funnily enough, Jen, whilst I was doing a quick search through the site archives for this info, the first message that caught my eye was this info from the balance specialist to a person in Australia asking about finding a dizzy specialist. This is the answer he gave.

“I do know an excellent physician in Sydney who is recognized world-wide as one of the premier vestibular clinicians. He gave several talks at the Barany conference and I was very impressed with him.

G. Michael Halmagyi
Royal Prince Alfred Hospital
Camperdown, Sydney, NSW 2050, Australia
Institute of Clinical Neuroscience”

I can’t remember where you are in Australia, Jen, but should you want to see a neuro otologist at any point, you could go to the dizzinews site and ask if he knows of someone nearer you. I haven’t got the site address to hand now, but if you want it, let me know. In the meantime I can also check whether I’m allowed to post it on here.

Basically by the time my friend actually got his appointment with the neurotologist (10 months in) he was much better. The ENT’s he saw were fairly useless, but like both of you he found out about vestibular rehab independently (didn’t see one in person just got the exercises off the net, which isn't ideal) He did his exercises religiously and also did lots of staggering dizzily round the local park to try and aid compensation. Having said that in the time since he saw Rosalin Davies he has improved a lot, she did all the tests on him, then gave him some exercises specifically tailored to him. She said if he continued to have problems he should come back and she had some other tricks up her sleeve. She didn’t specify what they would be. He said she was fantastic, took loads of time with him, asked him to give her his whole history from the start, not to leave anything out etc…

I know both of you know about vestibular rehab. Like I said it's just something to have in your back pocket should you continue to be ill past the 6 months to a yr prognosis. Hopefully you'll never have to bother with this as you’ll be better soon.

Emsybobs, my friend lives in London and his GP got a special grant to allow her to send him outside of his local hospital catchment area. She also sees people privately. If you can’t get an NHS referral, your doctor can refer you to her privately. The National Hospital for Neurology and Neurosurgery is in Queens Square London, WC1N 3BG. The other person I know of with long term dizzies (year and a half) and was cured with migraine meds also went there and saw a different neuro oto. I mention Rosalin Davies because I heard such good things from my friend.

[This message has been edited by moderator2 (edited 03-23-2003).]

hbep
Thanks for the info on the neuro otologist. I might give the guy in Sydney a call. I live in Melbourne, but he might have a contact here.
Last night I hit my lowest point of the past 6 months. I spent half an hour on the phone to my mother in South Africa (I am South African, not Australian!) bawling my eyes out and yes, Ruth, wailing "I can't live like this anymore". Well I woke up this morning to quite an improvement in the dizzies. Maybe letting off all that steam helped?? I'm not getting excited though. I'm just enjoying every 'good' day while it lasts.
Hang in there everybody and if the tension needs to come out, let it come out!
Jen

Hi everybody.... just want to say thanks to everyone on this board for being so helpful and supportive - I have learnt so much more from you guys than any 'professionals' about the inner ear. It is definitely helping me cope and I think if I hadn't found it by accident I would be in even more of a state!!!

Well I saw the occupational health doctor on Monday. Basically to discuss returning to work, how much I can cope with, etc... Thankfully I went well prepared because she was one of those doctors that could definitely make you feel intimidated! The first thing she said to me was "do you know why you are here?" So I said "yes - do you?" !!!!!! (I think I'd know why, considering I've been off with lab for the last 4 months!) To be honest I felt like saying I've been on holiday in Barbados living it up, what do you think!!!
You know the sort, abrupt, no people skills, doesn't look at you when she asks you questions, etc... But I was very assertive and explained everything in detail and thankfully she warmed up and turned out to be quite human! She actually knew a fair bit about the condition and was impressed with the fact that I've been referred for vestibular therapy, etc... She said you'd be amazed how many people with inner ear probs are misdiagnosed and told they have anxiety. Strangely, I think she liked the fact that I had tried to read as much about it as I possibly could - which was good, as I know a lot of doctors really don't like us knowing too much!! Hee hee!!


Ruth

xxx

Jen ... definitely agree. If you've got to cry and wail, do it! It doesn't make it go away, but I definitely feel better for having a good cry.

By the way, yesterday was my 26th birthday! Help! Thankfully it was a slightly better day, dizziwise, although a couple of friends who came to visit stayed that bit too long and it seems that I can only cope having a conversation for about an hour and then my concentration completely goes - ended up feeling more disorientated later on - but I guess all these things are teaching me to judge how much I can cope with when I return to work - probably only a couple of hours a day.

Ruth

xxx

Hope everyone is having a good day.

Hi Ruth...Happy Birthday!

WAS having a good week and although was suffering from extreme tiredness, dizziness was far better. And then today feel really tired, abnormally so, and dizziness horrendous! Just had to write on here! Am frustrated cos I dont know what the hell is going on with my body! This tiredness is awful and I'm now thinking of all possibilities. I have heard Lab can be caused by the epstein barr virus, is this true?

xxx

Hi Ruth

Happy Birthday!!

Emsybobs, I am as frustrated as you with this thing. Why do you suppose the dizziness goes up and down? If your brain is compensating, surely it would go from strength to strength as it works at it; not up and down like a yo-yo!!

I phoned my Vestib Therapist in Adelaide today. I was planning on flying out there again for an appointment next week but she's going to the US for a conference in the vestibular disorders. She says the delegates are going to present interesting cases to the others, and after speaking to me she said I will be one of them. That really p'd me off! I don't want to be unusual! I want to follow the typical pattern of dizzy, compesation, better. The End.