Hi all

Am a long-timer here and rarely pop in these days but wanted to say a big MERRY CHRISTMAS to all those who know me and those suffering from vestibular problems. I will never forget what a lifeline this board was to me in the first couple of years of having this (uncompensated Labs).

Special wishes go to Scotsman, Hbep, Katkin, Mica, Wowweeeee, Subs, brina, realbelle etc...

All the very best for 2007.

Cl xxx:)

Hi CL,

Merry Christmas. I was thinking about you the other day. I hope you are doing well.

Best wishes for a healthier new year!

Gloria

Hi all

Am a long-timer here and rarely pop in these days but wanted to say a big MERRY CHRISTMAS to all those who know me and those suffering from vestibular problems. I will never forget what a lifeline this board was to me in the first couple of years of having this (uncompensated Labs).

Special wishes go to Scotsman, Hbep, Katkin, Mica, Wowweeeee, Subs, brina, realbelle etc...

All the very best for 2007.

Cl xxx:)

Hi C/L

Best wishs for 2007---Merry Xmass---hope all is going well---headed off to Oslo shortly after the first of the year---skiing(Geilo) I hope---Hope work going well

:cool:

Hi guys,

Just thinking about you all too, though I don't pop in a lot these days. Wanted to say merry ho ho to all the oldtimers too: scotsman, Subs, Scant5, hbep, crazylab, and everyone else I'm forgetting. CL tell willsmom hi if you talk to her.

I wish you all a great, healthy 2007!!!

Have fun skiing Subs!

Scott, what's up doc???

Happy Holidays from your Oregon Christmas tree farmer gal :wave:
XOXO

Just wanted to chime in as well to say HAPPY HOLIDAYS AND HAPPY NEW YEAR!! I owe my sanity to everyone on this boards, when I was going through the worse of times with this ear stuff. It's so comforting to know there are people out there who can understand and give support.
Wishing everyone the best for the new year!
Joy

Hi guys,

Just thinking about you all too, though I don't pop in a lot these days. Wanted to say merry ho ho to all the oldtimers too: scotsman, Subs, Scant5, hbep, crazylab, and everyone else I'm forgetting. CL tell willsmom hi if you talk to her.

I wish you all a great, healthy 2007!!!

Have fun skiing Subs!

Scott, what's up doc???

Happy Holidays from your Oregon Christmas tree farmer gal :wave:
XOXO


Hi Terry

Thanks---hope--there is snow---knew u were out there---somewhere---have a Merry Xmass and a Happy New year---& a great 2007....

MERRY CHRISTMAS to all. Hope we all have a blessed New Year with NO dizzy woes!!!! How you doing CL? Prayers for all. Merry Christmas, Belle

Lovely to hear from you all.

TF - Ilia and I are still great friends - will pass on your regards.

Subs - enjoy the lovely Oslo!

RB - hope ur ok? Am doing well thanks, coping so much better these days.

xxx

CL-
Glad to hear you are coping better these days. I remember reading your posts in the past, and I remember how hard it was for you. i'm glad things are better! Yay! happy new year!

Merry Christmas to you too CL and everyone else on the board. How have you been? Say a big hello to Ilia for me too!

Subs: lucky you with the ski trip. Have they got any snow over there yet? I hear everything is warmer than it should be - Toronto included.

Hey Terri - cool to hear from you. Yup, the thesis is completely finished now. I got a letter from the Dean last week saying that the hard-covered version plus emendations were accepted and now live in the main library. No doubt it willl sit there and collect dust for another 100 years and no one will ever open it - lol. That's what happens with these things it seems.

So how was the Christmas tree harvest this year? And are you symptom free now? I'm still on the roller coaster (but very manageable at the moment) and am almost certain that I'm dealing with the last stages of this monster - MAV. In fact, I'm starting to believe that MAV may be a common outcome for many sufferers of VN. Someone needs to investigate this.

Cheers...Scott :cool:

Hey there Scott!

Yeah, knew you'd finished up. Now what?

I am still at 100%. It will be 4 years in a couple days (12/28). Took about 1-1/2 to crawl out, and now it seems like a faint memory. There's hope!

Tree harvest was good this year, albeit small. We do wholesale stuff, and we're just really getting going, so a few hundred a year. Trout Creek Tree Farm is our name and you can check it out by typing that in as all one word if ya like ;)

Subs, I am out here! Life is good. Think of you often.

CL, thanks for passing on my greeting to Ilia. Tell her I hope she and El and the kids have a great 2007. Still think fondly of the video images the three of us had together a couple years ago!

Ciao!
Terri

Glad to hear that so many of you all are doing better! I have been having some good days as well. It seems very up and down for me these days....but at least I am feeling some hope. Happy New Year to everyone!:wave:

Will do Treefarmer.

How are you doing Scott? MAV hey? What a nightmare... What are you up to these days? Must catch up soon.

Am doing ok...London have just this week said to me how well I am doing mentally and I can feel it. Acceptance is much of it and a change in attitude after 4 hellish years. I no longer fight it, just accept that this is the way it will be and I have much to be thankful for. Have moved out and holding down a good full time job - something I never thought I would do.

Keep in touch :) xxx

Hey CL,

Great to hear you have moved out etc and are able to do the full time work now. That must have made a huge difference for you getting out from under your parent's thumb. Yeah, totally agree re acceptance and practising non-resistance to this and anything in life really. That doesn't mean not hunting down a solution for the dizzies, it just sort of removes the "poor me" emotional crap from the equation and allows for feeling a lot better and getting on with it. I realise this easier said than done in the early days of this though. God knows I was a wreck.

Yup - looks like this thing has evolved into MAV for me. According to Rosalyn Davies it happens all the time: VN to MAV. Furthermore found a good migraine paper on migraineurs where it appears as neck pain. So the vascular freak out occurs in the head and pushes pain into the back of the head and neck. Sometimes my head feels like it will burst too but not often.

How's Ilia doing? Is she all clear at the moment? And what about you - any change in actual dizziness?

Take care...Scott x

Oh dear - sorry to hear about the headaches.

Funnily enough, Ilia too has awful daily migraine headaches - Luxon onto it but not sure MAV has been suggested. Will mention. She's dizzy free but the headaches are bad.

My diz is definitely more plateaued and less changeable but no change in the baseline level etc. Dont have muh time for VRT and my job is v much VRT but my next step is to see he private lady Ilia saw who Luxon's recommended. She has a different take on VRT and specialises in visual dependency. If that fails, then that really is the last option - fair enough if you have a few things going on, but the truth is vestibular problems can be incurable and maybe I'm just one of those unlucky ones.

Keep in touch xxx

Hi CL,

>>>but the truth is vestibular problems can be incurable and maybe I'm just one of those unlucky ones.

Really sorry to hear that things have not changed in the dizzy department. I don't agree with your statement CL. I know you won't want to hear this but, at the end of the day, the only thing you've tried to heal yourself with is VRT and time - VRT is only one of a number of methods for attacking this problem. Clearly that isn't working for you. On top of that, you are active and back at work, and seem to have a really good attitude about things - as in acceptance of how you are now (apart from thinking you are incurable). You should have come good on this by now or close if nothing else was standing in the way.

I just don't understand why you won't consider another issue or that a med might make a difference. We both know how insidious this stuff is and that it does not always appear as a textbook case (in fact rarely). You haven't tried anything yet in that department but are happy to say this is incurable!!! Come on CL, we both know many, many people who have climbed out of this pit trying some sort of med to give this thing a kick in the back side. Isn't it worth a try? The alternative is to accept being dizzy for the rest of your life! I know you put all of your confidence in LL but the hard truth is that it hasn't worked (VRT). Something is standing in the way. Does LL tell you this is for life or is that what you've decided? If so I'd be out of there in a shot.

I hope you don't think I'm being insensitive but there's just no way I buy that this thing is incurable or that a person cannot return to near 100%. To me it is a total capitulation to say "this is for life". Even my boss who has no functional balance organ on her right side and only partial function on the left is not dizzy. Not a fair comparison perhaps because she didn't have VN but it shows how remarkable the brain can be at compensating for deficient hardware.

I really hope the new specialist you see will come up with a new plan for you that sees something break in this.

Thanks for filling me in about Ilia. I must contact her and see how she is handling the headaches. I wonder if she is in the same boat as me in the final "act" of this drama.

Take care.....Scott x

Hi CL,

>>>but the truth is vestibular problems can be incurable and maybe I'm just one of those unlucky ones.

Really sorry to hear that things have not changed in the dizzy department. I don't agree with your statement CL. I know you won't want to hear this but, at the end of the day, the only thing you've tried to heal yourself with is VRT and time - VRT is only one of a number of methods for attacking this problem. Clearly that isn't working for you. On top of that, you are active and back at work, and seem to have a really good attitude about things - as in acceptance of how you are now (apart from thinking you are incurable). You should have come good on this by now or close if nothing else was standing in the way.

I just don't understand why you won't consider another issue or that a med might make a difference. We both know how insidious this stuff is and that it does not always appear as a textbook case (in fact rarely). You haven't tried anything yet in that department but are happy to say this is incurable!!! Come on CL, we both know many, many people who have climbed out of this pit trying some sort of med to give this thing a kick in the back side. Isn't it worth a try? The alternative is to accept being dizzy for the rest of your life! I know you put all of your confidence in LL but the hard truth is that it hasn't worked (VRT). Something is standing in the way. Does LL tell you this is for life or is that what you've decided? If so I'd be out of there in a shot.

I hope you don't think I'm being insensitive but there's just no way I buy that this thing is incurable or that a person cannot return to near 100%. To me it is a total capitulation to say "this is for life". Even my boss who has no functional balance organ on her right side and only partial function on the left is not dizzy. Not a fair comparison perhaps because she didn't have VN but it shows how remarkable the brain can be at compensating for deficient hardware.

I really hope the new specialist you see will come up with a new plan for you that sees something break in this.

Thanks for filling me in about Ilia. I must contact her and see how she is handling the headaches. I wonder if she is in the same boat as me in the final "act" of this drama.

Take care.....Scott x


I agree 100% with Scott. I know others say to accept this is what you've been dealt with, could be worse, etc. For me, the road is to fight fight fight. The right answer must be out there some where, whether its standard or alternative options. I am NOT saying necessarily the right doctor, but the pieces of the puzzle can often be put together. It may take time, lots of opinions (including from well-educated people like Scott!), and lots of research on your end, in addition to your belief that you can get better, but it IS possible. In the end, if I am wrong, I will know at least I tried it all. I do wish it didn't take so much TIME though, but that's how it goes.

I do agree with you Scott but a few roadblocks I have encountered: NO doctor has wanted/offerred to give me any meds. I was only recently offerred valium (this is 8 months into to this) and then by new neurotologist in reponse to my recent phone call regarding nauseau offerred a motion sickness supository- not a solution for DAILY nauseau!!!!!! I know that its up to me suggest the meds to the doctors, seek out better doctors, etc.

Another example of how amazing the brain can adapt: I treat (I'm a physical therapist) a little girl with a two paged list of medical diagnoses. She is called blind and deaf, yet she sees and hears. The doctors say she really doesn't have much left of her brain, yet she walks and talks and understands everything. No one can explain it but it is true. She has lots of challenges, but what she can do with what she has is unbelievable. The brain is an amazing adaptable thing and we only know the tip of the iceberg as to how it works.

Our medical system has split everyone up into such areas of specialization that unfortunately you often have to put it together yourself. Don't settle!

Wishing you the best,
Joni

Hey Em

same old same old Im afraid, I'm working but I'd say I'm at85%, still not driving, yikes, guess I've left it too long and now almost 4 years in, I've lost all confidence. Hey I do my VRT, don't take meds because for me I can't see how meds would help, so I'm with you on that score! I'm kind of like you, maybe I'm destined to be one of those who always has some kind of imbalance!! Mine is all visual symptoms, you know kind of like an old tv where you got that fuzzy stuff, hey thats me:blob_fire or that foginess in the head. I had a really bad flu this last week and was off my feet so guess what all the dizzy crap came back to play, one thing now I don't get freaked by it, it p's me off greatly that its there but I know it will abate again and I just have to step up the head movements etc. Fab you are back and work and moving out, that is excellent! I still hate being on my own and get quite panicky, which is the stuff that really annoys and frustrates me! Have you heard from Illia, I texted her a couple of times but maybe she has changed her number... can you let her know I was asking for her and to get in touch, I lost her em! Was thinking about you both a lot and thought I should really get in touch... not sure how we can exchange off of here?? It's funny isn't it being one of the old timers along with Scott! So many new faces on here.. BTW got married in the summer!! get in touch sxxx

Little one - cant exchange info on here am afraid... Sorry you're not much better but 85% sounds not too bad - def better than the last time we spoke. Sounds like we're fighting the same battle.

Scott - without writing an essay, I know wot you are saying and respect it but I do trust my specialist and am certainly not going to start taking anti dperessants which can cause all sorts of nasty effects (you know that only too well) without or against her opinion. I appreciate that there is hope and lots improve with this but there are cases which never reach 100% - find it in any literature and search internet support groups for cases. I've been there done it with analysing til my heart's content and trying to diagnose myself - now I realise I'm lucky that I've found someone who knows what they're talking about. The analysing and searching is what did me in mentally and therefore I'm def not going back there.

Take care xxx

a really old post I found, but I'm with Scott on this one. I'm also really surprised your doc hasn't tried some meds. Its the only thing that cured me. I'm treated by Rosslyn davies@ national