Hi C/L

When asked----What will be your top and most pronounced symptom that has been with you from the beginning---whether you were 10,50,or 90%?

---your only allowed one---be specific & articulate??

:cool:

CL,

On what day are you going to LL again?

ROFL Subs.

Ok, dizziness in the head. A spinny feeling in the head which also affects my eyes and when bad, can make me feel v v faint. I liken dizziness in the head to the feeling of a "snow dome" being violently shaken!!! It is ALWAYS there in varying degrees - particularly bad with any head movement. Looking up and down are the worst.

Do you think they will ask me such a ques?

So lovely of you all to think of me going etc. Bless you. I go tm by coach and staying with my sis/fiance tues and weds nights. Meeting a friend weds and perhaps braving the shops (briefly!!)!!. Appointment Thurs. I think my dad is going to collect me now as hes worried about me after the tests etc so I hope to be back Thurs night. But maybe 24th. Will post on here anyhow when I'm back.

Am v apprehensive about it all really - worried what they'll say and also worried that I seem to be in a considerably "good" patch (still noticeable symptoms) but better than "normal" - do you think this will affect the testing subs? SO very worried they wont find anything.

xxx

PS) Unfortunately I have never been "90%" throughout this **** - 60% is my top limit of which I have been at the past few days. Oh, how do I dream of the 90's... :cool: xxx ;)

Hi C/L

....."Do you think they will ask me such a ques?".....

Yep---think they would/might to collect your history---which is vital---to a good Dx----see that part of Sticky Info Archives post above "Chronic Dizziness"

Here is the web address(PDF file) for the one Doctor Shepard uses at the Univ of Penn Balance Center---he is the gent who coauthored the Chronic Dizziness article and the Directory of the Univ of Penn Balance Center:

http://pennhealth.com/hup/balance/questionnaire.pdf

As to your answer "Teach" see if you can tighten it up a "tad"---and---when did it occur/start?? And unless in good old merry England---"snow domes" abound---you might pick a different analogy :cool:

Lets shoot for a "A"/4.0 here---huh!!

..."do you think this will affect the testing subs?"....

No---this has been going on so long---suspect---they will rely on---your history---as told by you---and any medical records/tests---forwarded by your other Doc's----as described in the "Chronic Dizziness" article.

...." I think my dad is going to collect me"....

Yep that's what Dad's do :cool:

...."worried"....

Anxious---is a better word----reserve "worried" for something that is not "benign"----remember Illia advise---it is sound---real "Brit"!!

And as they say "chin up"!!---your almost there---deserve much credit---for persevering---lot talk the talk---few walk the walk---go get them--Teach!!

:cool:

You are such a star - and have me in stitches every time. :)

Yep---think they would/might to collect your history---which is vital---to a good Dx----see that part of Sticky Info Archives post above "Chronic Dizziness

As I have seen LL before, I am hoping they will have all her notes and the extensive letter I wrote her - so altho they will indeed go over the history, im hoping they'll have much of it infront of them.

Here is the web address(PDF file) for the one Doctor Shepard uses at the Univ of Penn Balance Center---he is the gent who coauthored the Chronic Dizziness article and the Directory of the Univ of Penn Balance Center:

Yep seen that before and have a copy somewhere - thanks subs...

Wetting myself at the snow dome thingy...ok will think of some more descriptions - I do "teach" plus did an english degree after all...! But we all know how hard it is to voice this dizziness correctly - such weird symptoms.

Certainly will aim for the A star - just hope I dont miss...

Yep ur right - anxious the word...apprehensive...

Thank goodness for Dad :)

Yoi are right "few walk the walk" - as you have said - before - its a walk we would have done anything to miss - but it is here and I hope, for me too, the walk will one day be complete and - after all - lessons have been learned - ama firm believer in everything having "meaning".

Bless Ilia - will do as she says - oh btw, she will be offline til 5th jan incase anyone wondered where she was...I know that her and many of you will be by my side at LL's - as many of you - particularly Ilia have "walked the walk" with me. As I recently said to Ilia "We are in this together" and thank goodness for my dizzy friends...

Await my post.:)

xxx

PS) Relieved you said "good" patch wont affect testing - so I therefore wont need to spin myself 6 times before getting on the underground then go on a manic and extensive shopping spree just to - "sort" this crazy and unpredictable head monster out!

:) xxx

CL,

Just a quick note to wish you well - good luck.....

CL,

I think what you describe as snowball sensation, dizzy in the head, I describe as numbness in the brain :D

I know how important it is to find the right description for your dizziness because I think that is partly what went wrong with me at the neurotology clinic in Toronto. At the time I didn't know that much on dizziness. I think I would be better second time around.

I will be thinking of you on Thursday. I wish you all the best XXOO.

Good luck CL. Looking forward to the "road to recovery" map they prescribe for you. Have you written everything down to tell them? I'm sure you have....want to make sure they get the entire story right from the start.

S x

PS) Relieved you said "good" patch wont affect testing - so I therefore wont need to spin myself 6 times before getting on the underground then go on a manic and extensive shopping spree just to - "sort" this crazy and unpredictable head monster out!

:) xxx


...."spin myself 6 times before getting on the underground then go on a manic and extensive shopping spree".....

If their as good as I think they are---and hear they are---have a ball

---do ur thing---hey---go the U.S. of A. route &

---charge it all off---to "The Card"---that way---when this junk goes "bye bye" and leaves the building headed for Elvis Land

---it will be replaced with the U.S. of A.---"debt woes shoe fly shuffle(it's a two step)"

---better known---here--- as go in hock till you drop---some would substitute---"shop" for "hock"

----at least you will not be dizzy and in the minority---broke---but not dizzy

---in the majority--no longer in the minority

---known here as being in the "main stream"---what more could a 21st century person ask for----yippee!!

Good Luck C/L---u'll do/be fine & teach us all something in the process!!

:cool:

CL,

Just wanted to add will be thinking of you on Thursday and want to wish you the VERY BEST OF LUCK, hope it all goes ok for you and think you should go on a shopping spree - you deserve a bit of spoiling, nothing like retail therapy to cheer us gals up lol

Chris x

(((( CL ))))

Hope it all goes really, really well on Thursday, hon.

Ann xxx

Thx all - ur such stars. Laughing at the shopping comments. Wont spend much as dont have a credit card!!!

Scott - as I said they have the letter I wrote to LL - I will take a copy too - but it says everything in there - I have written down some additional notes also.

Leaving soon. Will report back Thurs/Fri.

Hugs xxxx

hi c/l

thinking of you, best of luck, enjoy your bit of shopping.............lorr.......xxxxx

CL...Hope all goes well for you and you get all the answers you seek. We'll be thinking about you....

John x

CL,

Know you won't see this until you return, hopefully with all the info you're looking for, but wanted to chime in here with mucho luck for you!! Can't wait to hear what the wise LL has to say. Hoping she doesn't say something simplistic like "uncompensated labs," to which you could certainly say "Duh!"

Cheers,
T

CL:
Only the best thoughts for you. Great to hear you are also having a good patch.

Kathy :angel:

Hey all.

Ok am v dizzy and v tired so sorry if this is not too coherent!! I will try to be as concise as poss!!!

Ok, got 2 hrs kip as was so worried, yesterday was fab dizziness wise, shopped til I dropped but dizziness worsened this morn due to tiredness. Got to hospital and had consultation. He went through history and asked other questions like do you have migraines and have you been depressed/anxious blah blah. He did some tests inc standing with eyes shut at which point I fell into him and he said "I think I know whats wrong with you".

Went off to have tests. The R. Chair resembled chinest torture like scott once said!!! Wouldnt do it again but it wasnt TOO bad - it had to be done. After it I felt v bad. Had hearing test, tympanogram, blood pressure check and calorics. NB: They said the brain stem check was "not necessary".

The calorics was different to my other one - not entirely - just slightly - I noticed quite a difference on one side. Good I thought. Again, was horribly dizzy after.

So, final consultation...

Let me summarise.

* R. Chair and ENG showed left inner ear damage.

* He said I had compensated too "visually" hence probs in dark etc and that thus was a new area of research in that they know why it happens but dont really know how to treat it except through some VRT. This all made sense.

* He said my ENG would have showed more damage 2 yrs ago - but I have compensated to a degree. Oh and that not only does the brain compensate but the inner ear can infact repair itself to an extent they believe. Didnt know that.

* Why hadnt I compensated? He said everyone was different and they didnt know why for many BUT there are two factors which may come into play with me - one, being anxiety/depression as I rated quite high on a questionnaire he gave me and he said that depression/anxiety can significantly affect compensation. He suspects I have been anxious subconsciously and avoided things from day 1 of labyrinthitis which may be true. Oh I aske dhim about meds scott and he said he didnt want me to take them and CBT would be enough.

He also said that cases that were not "typical" but still labyrinthitis - in that they do not start with true vertigo - often took longer than the severe onset cases - to compensate. This is said to be because the brain "does not get that there is a problem". Interesting and a point I have considered before.

* My hearing was normal as were middle ears but he said that middle ear stuff can vary as in when I have fluid in there, the reading would be different.

* He said my "bouncing" was a bilateral symptom tho I def do not have a bilateral problem! He said everyone was different and he suspects that a middle ear problem on the plane last yr irriated my inner ear problem hence causing the bouncing and motion that was so horrific last yr and still plagues me (it is with me as I sit here). I know that ilia and others had bouncing with a unilateral prob too so i guess not everyone follows the "textbook".

* He said my balance function was substantially there as in I will recover and to quote he said "This does not last a lifetime", "You will recover 100%". He suspected that my "generic" VRT was not suitable for me hence why had not really helped so I am going to VRT with them... I have also been referred for CBT.

* He took blood tests for a few things inc immunity just to check things.

Think thats it...Oh he said some people believe labyrinthitis "reactivates" and others think it "decompensates". He believed the latter and so do I.

I am happy. I knw which ear it is and I have the same diagnosis now from 3 separate people. Terri - you made me chuckle as yes it is uncompensated labs but I knew it would be (hope it would be too) and he did nt think it was odd I hadnt recovered. He said he sees people with it years and there are factors which may have stopped me. I agree with this. He said everyone is different.

Oh he agreed increased dizziness with menstruation v normal with this due to increased fluid levels.

Um...think thats it. I feel I finally can lay the past to rest and move on into recovery. I will nw have the mental support and professional support i have so desperately needed - and to be told this is nt a life sentence and that "98%" people recover - is v reassuring.

Thanks for being there guys. Here's to a recovery at some point hopefully. It would have been nice if this had never happened but I have learned so much and I know my life will never be the same again after this. What doesnt break us, makes us. And this thing, I have decided, will not break me. It is something I would not wish on anyone in the world - as you all can comprehend - but Ilia beat it at the 3 yr mark and I sincerely hope to also!!

Hugs xxxxxxxxxxxxx

Have just thought - I think he may have misinterpreted my "bouncing" description as oscillopsia as he said "many people with inner stuff have motion and as if they are on a ferry" which in effect is what I mean re: bouncing. A semantic miscommunication I'm thinking!! xxx

CL,

So pleased you got some answers. My VN started much the same as yours (without spinning) - nice to know this is normal also.

Good for you!! And a Merry Christmas to you, here's to your recovery. I'm certainly hoping for a better one than last year and up to now I've had a great time.

Goon on ya.

Lizzy x

Sorry, meant Good on Ya.

Too much wine !!!

Lizzy x

"This does not last a lifetime", "You will recover 100%".

Woo-hooo!! I'm really, really pleased for you :) Well done.

Ann

C/L:

It sounds like you finally got to see someone to shed light on your prognosis.
Loved the comment about this not lasting a lifetime.....good for us all to read. It sounds to me that perhaps now you will be able to reduce some of the anxiety and depression and concentrate on being well. As so many of us have said, sometimes the anxiety was the worse part of the inner ear mess.
Wishing you a very Happy Holiday and I know 2005 is going to be a great year.

Peace,
Kathy :angel:

Hey CL,

That was a brilliant read. So glad you have some really solid information to go with here and that he quite confidentally said you'll reach 100% - what a great Christmas present :D. Love getting new information on this stuff and you certainly added some interesting new points, namely:

"the inner ear can infact repair itself to an extent they believe"

"cases that were not "typical" but still labyrinthitis - in that they do not start with true vertigo - often took longer than the severe onset cases - to compensate. This is said to be because the brain "does not get that there is a problem" (I def think this was my situation too)

"my "bouncing" was a bilateral symptom"

"increased dizziness with menstruation v normal with this due to increased fluid levels."

From what I can gather, it sounds to me like the guy you saw was very good and very perceptive. Glad about the questionnaire they gave you too re anxiety/depression and that they zeroed in on some "avoidance" issues for you and that it might have been the thing holding you back. I know once the anxiety settles down, you'll really see a big difference in the symptoms....it's a relatively fast process (it was for me anyway) once the dammed anxiety clears.

You've done so well CL going through all of that testing. I think you'll sort this anxiety thing out quickly with the right help because you've already demonstrated huge amounts of bravery just by pushing through all of the tests in London! Another caloric would scare the s**t out of me I think.

One Q though - didn't the caloric show nothing years ago? Have I got that right?

Great news CL... made my day really.

Scott x

Hi CL

I'm so very happy that you are finally getting the right help. I found your post very interesting (in fact read it a few times) and especially found it very encouraging. It's highly probable that I also suffer from uncompensated VN (although not as bad as you it seems) but have not found the right help. I DO hope you get to be 100% because that will mean there is still hope for me.

Hey C/L

Welcome back!

Good show---not surprised---sounds like they are as good has I heard they were---now---it is up to you---to follow through---what a great post and a great trip

----now if we could just get some of the other UK folks in to London.

Wait till Ilia---reads/hears---about this---you certainly added to our knowledge base---on this junk---your comment on vision and they don't know why---was interesting---think I'll pull the string on that one with Dr's Hain and Shepard---let you know---if I find out anything.

Merry Xmas!!

:cool:

Hello C/L - Your post was a definite Christmas present to me, and others, I am sure. To know that this won't last forever! HOORAY.
This junk came on me gradually also, no sudden spins or anything like that. I get better and then have difficulties again. I am also doing generic type VRT. It would be terrific if you could share your new exercises with us.
The anxiety/depression issue was extremely interesting. I am still having a lot of trouble within my marriage and my dizziness is "off the wall" when the anxiety and depression set in. It's a constant struggle for me to stay positive. I just wish I felt comfortable takings AD's. For me Ativan works great, when needed.
I am so happy for you that you have some answers. Thanks again for sharing this information with everyone. Rest now, and feel better for the holidays.

Linda

Hi CL,

So pleased you got some answers and that hopefully now you will be on the road to recovery. Thanks for the post, like everyone else here I found it really interesting and encouraging, my dizziness was never spinning, just a gradual decline, so maybe there is hope for me even after 6 years.

Hope you managed to get a good sleep last night and are feeling much better since your tests. Good you got to do some shopping too!!

Hope you have a great Christmas and New Year and that 2005 is your year,

Best wishes, Chris x

Hi all

Bless you all.... do appreciate your replies.

Just woken and feel v diz/off balance - took a tablet last night (stugeron) which I think has knocked the motion on the head.

Glad the post helped lots of you.

SUBS - I have told Ilia the gist though we have not spoken - but will do soon. V V weird that she too had left damage and EXACT symptoms!! There was an article in Veda recently about the vision thing - a v interesting one too - i get their newsletter..

SCOTT - Apparently my other ENG DID show my left was nor as good as right - but this ENG picked up more as it is better testing plus I had the R.Chair also which picked it up - never had that before.

STITCHER - He told me yest that any emotional stuff can really cause the dizziness to worsen - just like getting a cold etc - you have a lot on your plate - I really hope you feel better soon - what a nightmare to have such a horrible personal issue too. Hugs.

The guy I saw was v good - he gave me a lot of time esp at end when I bombarded him with questions! Now at least I have VRT and CBT to lookf orward to plus another appointment in the department in June 05.

OH when I asked him "do you see many like me - 2 years etc"? He just rolled his eyes and said "So many - and many much longer". Mica and Chris - DO NOT lose hope. With the right help, you can get there.

Thanks guys xxxx

Hi CL,

Glad it went well, and good to see you back ok.




* He said my ENG would have showed more damage 2 yrs ago - but I have compensated to a degree. Oh and that not only does the brain compensate but the inner ear can infact repair itself to an extent they believe. Didnt know that.



AFAIK the caloric responses would have remained the same, but the directional proponderance (which is mostly assessed by the rotation chair) would now show a much better result. This is probably because (I don't know if things are still the same as they were when I went there) they run part of the standard ENG battery in the rotationchair booth and the calorics separtely (without electrodes - so that part isn't really an ENG ;-)), so when refering to ENG it includes some of the rotation chair tests. As the calorics always stay reduced, (unless there is some acute immflamation - though at that stage your not likely to make it as far as the ENG room....)

Yes, there have been several studies which have shown that vestibular hair cells can regenerate. Unfortunately it is at a very low rate, so slow that in the elderly it gets quickly outpaced by the normal degradation process. However, the fact that there is some regeneration is important, and a lot of research is being directed at speeding up the regeneration/regrowth process (as with other nerve regeneration processes this is reliant upon breakthroughs in stemcell research) - I've read a couple of articles about it, but in all honesty it is far too complex for me too understand.



* He said I had compensated too "visually" hence probs in dark etc and that thus was a new area of research in that they know why it happens but dont really know how to treat it except through some VRT. This all made sense.



Apparently certain VRT exercises can be very effective for this - but they are also the more subtle, gentle exercises (so I'm told) and have to be very carefully and precisly balanced.



He also said that cases that were not "typical" but still labyrinthitis - in that they do not start with true vertigo - often took longer than the severe onset cases - to compensate. This is said to be because the brain "does not get that there is a problem". Interesting and a point I have considered before.



Interesting, I've wondered the same thing many times before. I know a few people who've had complete unilateral labyrinthectomies(sp?) and fully recovered within a few weeks, yet some people only seem to have minor damage yet find it hard to compensate - so it makes sense.



Um...think thats it. I feel I finally can lay the past to rest and move on into recovery. I will nw have the mental support and professional support i have so desperately needed - and to be told this is nt a life sentence and that "98%" people recover - is v reassuring.



YYYYAAAAAAAAAAAYYYYY!!!!!! I'm glad your feeling a bit of reassurance - and like things are finally moving..


Have just thought - I think he may have misinterpreted my "bouncing" description as oscillopsia as he said "many people with inner stuff have motion and as if they are on a ferry" which in effect is what I mean re: bouncing. A semantic miscommunication I'm thinking!! xxx



By bouncing I think he thought you meant bouncing/motion of the visual environment (oscillopsia) - bouncy video camera vision, swirling etc. Which can occur with both unilateral and bilateral patients (though bilateral people nearly always have it, and it only occurs sometimes in unilateral). what did you mean?



Anyways, I'm so pleased all has gone well, just chillout and enjoy christmas now, eh?

:wave:

THx BG.

I meant the bouning/motion I got after the flight - bouncing of the floor - and feeling like im on a ferry.

Think you're right about the ENG and calorics. Though he did say my calorics would have def showed a greater deficit 2 years ago and altho some of the compensation is brain, the inne ear repairs hence the higher caloric result now.

U have a good christmas too and fight for that referral! xxx