Hi Subs - my gosh you sure do know your stuff about these inner ear problems - how come?

I would really appreciate your advice - ok - brief background - 2 years ago had sudden and sever onset of extreme vertigo/imbalance combined with nausea etc etc. Diagnosed with Lab's it persisted to the extent that I could not get out of bed for 9 weeks unless crawling. Got a lot better but lots of motion sensativity together with a persistent feeling of walking on a matress etc etc. It has basically waxed and wained coming and going. But over the past year I have had some symptom or other every day albeit some days better than others. What concerns me is that I have read all the links and yet nothing specific fits my problems.....this worries me a little.not least as I just want to put a name to this problem in oredr to see an end to it at some point. I currently feel really not to bad at all (dizzy free more or less) when I ma semi-reclined or seated say in the sofa with my body and head supported. However problems start whenever I move around - I bvasically feel that my fine sense of balance is gone - basically I feel a combination of lightheadedness with the enviroment occasionally 'jumping or shifting - it appears to actually visually shift too'. I get odd feeling of falling through space or exagerated senstaions of movement. I can make my head dizzy if I look down for sustained periods or shift my head around alot. Likewise I find watching shifting objects - cars/TV if shaky etc can disturb me and make me feel icky. But the most annoying feature and somewhat distressing is the persistent imbalance when waliking or standing. Have you heard of this problem before? I have had an MRI scan so we can safely rule out anything ghastly - even though I know this the symrptoms still freak me. It has gotten to the point that i feel genuinely afrraid to move around alot - prefering to stay either sitting or layiong down in order to feel symptom free - is this making things worse? I get so aftraid that I ma going to loose my balance altogether (not falling) just having no sense of balance at all. This of course has never happened but I find it distressing to still feel this way. My consultant says that it is deff, inner ear likley VN after effects that will in time burn out albeit he couold not give a time limit. He said that myinner ear is over senstaive (whatever that means) hence the imbalance. Have you heard of what I ma describing? any ideas as to what could be wrong? I ma scared and feel a bit lost. Thanks

........"What concerns me is that I have read all the links and yet nothing specific fits my problems".....

......"My consultant says that it is deff, inner ear likley VN"........


----You do not see it in the below links---I sure do??

http://www.medical-journals.com/r03vn.htm


or here:

http://www.tchain.com/otoneurology/disorders/unilat/vneurit.html

I think your consultant...may have called it correctly....for most of us....it is not a alway upward set of improvements over time....for you it is that and them some with the baby and etc......what has it been 12 days 14 days...whatever...????????

In the first article....if it is VN---then there is some nerve damage...nerves grow back very very slow...and then need to be trained/retrained...which can not happen until they re-grow enough to be there to train/retrain........


Do not think you will find and excat match...did you get an ENG done????---you know what the lightheadiness is from---brain is working overtime to sort it all out---vision thing---goes with the vestibular prob as in "Fuzzy Vision" write up....etc....


...."He said that myinner ear is over senstaive (whatever that means) hence the imbalance".....

Think he means " brain has not compensated yet"---it will!

Think it is good to push---but only to the point where----it is productive


My guess(just a guess)you are pushing very hard---after the birth---to get back---it will come---but with time---and for each of us the time will vary.

Oh-by-the-way...VN(with BPPV) is excatly what they said I have---and every one of the things you listed and I mean all---I have/had.

Anyway that is my guess.....if it is VN...nerve growth...is prob the pacing element in getting back in balance...I think.....

Ask your Consultant---at what rate---do human "Nerves" usually grow/regrow?

Hi Subs30 - Thank you ever so much for your comforting words they really helped me soooooo much. I read your links which as ever were excellent. I was out of my bed today and sat outside for the best part of the evening and felt not too bad. Like I said before it is mainly standing and walkin that makes me feel off balance. Did you ever feel that your eyes focused at different rates or were a bit fuzzy? I have read the link on tis which was most reassuring - just wondered if you had noticed it yourself. I have not had and ENG done - I deffinately will. I take on board your comments about pushing myself ...I think you are right..thanks. I did not know that nerves could regenerate so thats another great point I will be asking about that too. i sometimes wonder if I should get anothet MRI done - what do you think - my last one was 18 months ago? Hope you are OK - last question - how did you reduce/cure the imbalance senstaion? thanks for your time and assistance.

....."Did you ever feel that your eyes focused at different rates or were a bit fuzzy?".......

Yes and in addition to that--- for the first two weeks after the start of it all---I saw double----if I looked at the TV I saw two TV's side by side---but one was a little above the other---when I read an article in the paper/book/mag I had to hold it off to the side so that my nose would block one eye---I found that holding it to my left---worked the best.


...."I did not know that nerves could regenerate so thats another great point I will be asking about that too.".......


Yes in most cases they can---but they take a lot of time---I was not joking about asking your consultant(Doc)how long(avg)....think you will be amazed.

---But don't let the answer slow you down


---remember if had lost your entire left vestibular system(which you or I did not)---your right would take over---with time---and compensate---geeze---I hope the Doc is a neurologist---but an ENT should know also.....


.........."i sometimes wonder if I should get anothet MRI done - what do you think - my last one was 18 months ago?"........


That is up to you and your Doc---if you feel its necessary---for your peace of mind then do it---not sure about costs there------here about $3,000.00 plus $$ to have it read.....mine was taken about 11 months ago---showed nothing.....My Primary Care Doc ordered it---she looked at it---nothing----the ENT Doc looked at it---nothing---the neurologist looked at it---nothing---in fact he said it was "unremarkable"---never thought I would like that word--so much!!


...." last question - how did you reduce/cure the imbalance senstaion?"......


Well I have not "cured" the imbalance senstation---completely---yet---but it is reduced.


I'm not sure how I did it---I just kept moving---and one day---in the 10th/11th month---I noticed that---even if/when I got the senstation---it was like---the feeling you get---from riding a roller coaster, etc....it was like "wow" instead of---making me feel ill


Now---in the 12th month--it is greatly reduced---and still a "wow" like feeling---sort of fun!

I'll leave you with a few "one line-r's" from the two web sites in the post above...note the one on BPPV.....:


........."The term "neuritis" implies damage to the nerve, and "neuronitis', damage to the sensory neurons of the vestibular ganglion. There is actually evidence for both.".......

....."In spite of the limited pathology that would suggest involvement of the entire vestibular nerve, there is reasonable evidence that vestibular neuritis often spares part of the vestibular nerve, the inferior-division (e.g. Fetter and Dichgans, 1996; Goebel et al, 2001) although not all agree (Lu et al, 2003)"...........


......"Furthermore, it is common to have another dizziness syndrome, BPPV, follow vestibular neuritis. Presumably this happens because the utricle is damaged (supplied by the superior vestibular nerve), and deposits loose otoconia into the preserved posterior canal."...........


........." In most instances, it is most cost effective to see a neurologist prior to obtaining an MRI. Blood tests for diabetes, thyroid disorders, Lyme disease, collagen vascular disease and syphilis are sometimes performed, looking for these treatable illnesses. However, it is rare that these are ever positive."..........

Oh---

....."Hope you are OK"........

Yep I sure am Thanks

---think we will both be "ok"---and beat it!!

subs-

can never thank you enough for all this great info... thanks....

navelis -jill

Yes, thanks Subs, you are a wealth of information.

I've had a shocking few days. I feel like I've gone backwards 10 steps. I have this overwhelming feeling of drowsiness and of course the dizzies. I know this is 'normal' but it's so disheartening when I'd been doing so well. Month 11 here I come.

Subs30 - thank you once again for the information it is very reassuring. Today I feel not to bad - the lightheadedness is intermitent but I have had an episode when I feel very dizzy and everything bounces around I feel like I might pass out - but I don't. This sensation really freaks me out - I ma interested that you have such a positive acceptance of this inner ear annoyance - how do you manage to just get on and not let it get ya down or freak you out? What symptoms do you have now? and do you feel them daily? Thanks againnnnnnnnnnnnn!

........."you have such a positive acceptance of this inner ear annoyance - how do you manage to just get on and not let it get ya down or freak you out?".........


First---with this thing----We are all on the same road heading in the same direction with some of us just further along the road then others.


Second----because of the way the medical profession operates in this area(with some exceptions)---you end up---like a person in a strange room---alone---and in the dark.


Third----There is no choice---you have to travel the road to the end---but with little or no help or insight from those who by their profession and training----it is to help.


So the only chance you have to make it-----with some degree of sanity---- is to gain a sound medical understanding of what is taking place, why, the possible outcomes and the times involved----it is your only light-----and with it you can figure it out & get there.


You have to gain this knowledge at a time when your cognizant capabilities are impacted, you have anxieties big time, your eyes don't work right, your lightheaded, most MD's think your nuts, and because on the outside you look normal---must people around you can not understand it or think your faking it---to get out of work.


I think the medical profession can do much better and should!


And, that they should drop their "Elvis Has Left the Building" attitude and get in there and work the problem with each person who has the problem.


After all what you/we have found out---via the various medical media/BBS's etc....is not exactly "rocket science" or unknown to those medical professionals who claim a expertise in this area.

Well not sure about you(I Robertson)----but all of that---tends to "pixx me off"---big time---because it is totally unnecessary----and puts you in the role of a "victim" ----so I do not get depressed----I get "MAD" and that to helps me get to the end of this thing---and it does have an end!! For me that works---but---is prob not for others.........


Further----


Submariners "do not" repeat "do not" ever make good victims!!


Oh almost forgot:


...."What symptoms do you have now? and do you feel them daily?"......


Daily---yep: Imbalance, headache sometimes, if I make a movement I have never done before---feel like I might overshoot it....but do not...usually happens only once or twice...then not again---all in all it gets less and less with each passing week now---used to be less and less with each passing month.




[This message has been edited by Subs30 (edited 08-09-2003).]

Subs30 - thanks so much - you are right it is the only way to get through this thing. Up until recently I was coping really really weel and just getting on with it but more recently it is in my head all the time and it scares me. It is not that the symeptoms are signifigently worse - so I am a bit puzzled about why I am not coping so well. Probably a bit to do with tiredness etc and the baby - not sure. When you say imbalnce can you dewscribe it? do you feel it when walking etc. Do you ever get the dizzy - thing when you feel really dizzy suddenly albeit briefly then OK again? Thanks.

Hi Subs,

Your explanations are really helpful. I find that the more I understand, the less I worry. I was reading your first response to I Robertson. When you say "you know what the lightheadiness is from", what do you mean? I get that a lot. I feel about to faint or blackout all the time. I had a CT scan and a holter test that were fine. Can you explain it to me? In one of the links that you gave us, it showed a diagram explaining that lightheadiness can be from vascular problems or psychiatric problems. I don't think I have those.

Finally, you mention losing an entire vestibular system. How do you know if that's happened?

Thanks.

Sarah

Hi Sarah - emmm - I read your post so I am not alone in feeling this fainting/passing out thing - it drives me crackers. Doesn't it freak you out? I find that mine seems worse when i am on my feet or walking about - I feel imblanced any how (not mentally just off balance) them wham it intensifies things feel worse and I feel very near to passing out or fainting. Thankfully I have never been unconsious but it freaks me out - some days I have it once only some days none others more often. I was diagnosed with Labs/VN 2 years ago and this is some what a chronic state now probably got BPV also. What do they sya is wrong with you? thanks.

....."When you say imbalnce can you dewscribe it? do you feel it when walking etc"......


Well(imbalance) for me is like when you are walking and make a 90% corner turn---it sort of feels like your going to overshoot the turn----but I don't---just feels that way---it is only when I am up and moving---never when still(standing/sitting, etc..)----it happens every once in a while now---maybe twice a week---some weeks not at all---think it has more to do with my positioning of my neck----think the fine tunning of the neck muscles by the brain is still a little off--for some movements---the part that keeps the head oriented correctly in "space".

....."Do you ever get the dizzy - thing when you feel really dizzy suddenly albeit briefly then OK again?"......

Yes---if I look up and to the left quickly---sometimes---it will feel like a "spin" is going to start---but it never does----it lasts less then a second---and happens when my neck muscles are tight.

But all in all----not much to complain about---given the way it used to be---some months back.


...."Probably a bit to do with tiredness etc and the baby - not sure.".....


Yes I think that could be the case......the brain working overtime.......to balance....taking care of the baby......makes you really tired.....and if your not getting a good night sleep (uninterrupted by feeding etc...)---solid sleep that will do it...but even then a good nights sleep(solid) normally brings you back......

Later.

Hi Sarah


.."When you say "you know what the lightheadiness is from", what do you mean?".....

I was refering to the web site I had posted concerning the "COGNITIVE ASPECTS OF VESTIBULAR DISORDERS"
which I had posted earlier---it is located at:

http://www.nemsn.org/Articles/cognitive.htm


The brain working in overdrive to deal with the bum vestibular problem---is a major problem----other things can cause it---but are usually ruled out early---through testing.


..."Finally, you mention losing an entire vestibular system. How do you know if that's happened?"....


I was refering to losing "an entire vestibular system" on one side(either the right or left--but not both---if you lost both you be using a "walker").


One(there are many other functions of the ENG) of the functions of the ENG testing is to determine the state of each vestibular system(left ear & right ear)----if you have lost your entire vestibular system on a "side" the ENG tests would show it.....for example.....


My ENG test showed my right vestibular system was "dead"---not functioning at all----after about 2 months it started to come back---it"s not there 100% yet---but I think it is getting there. I suspect the 8th nerve got inflamed---stopped working---and is now regenerating....but that's only a guess.


Take a look at the below web site---it has some useful discussions in it.

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