For those of you who have been dizzy 24/7 for a long time and seeing progress, how long did it take you to start feeling better and noticing that you weren't dizzy 24/7 anymore? If you exist??? :eek:

Rofl at your "if you exist" comment...I guess what we are really looking at Mpaiement is people who've had this 1 year or more? As at 2 and a half years and 1 and a half years (you and me) we are certainly in it for the long haul!!!!! :eek:

Good post tho MP...would also like to know what the LIGHT AT THE END OF THE DIZZY TUNNEL feels like. Even a glimpse at it would be nice in our cases, would you agree MP??!

xxx

Well Im definately one of the 24/7 dizzies in it for the long haul. Its coming up for 2 years in July.

I never know if im getting better or not. When I am in my good phases I have thought in the past that I am getting better and its only a matter of time but then I go backwards again. The past 2 years has been that cycles, better, worse etc. Even if I was completely symptom free I think I would have a hard time believing I was better!!

its a year for me, tho i joined here last may, it did start in april, the first 4 months were the worse symptom wise, very intense and disabling, tho not in the spinny way, the motion , swayey. bouncy .shimmery. boat.wavey..etc way........after being prescribed betahistine, stemetil, they made no difference, i was prescribed a small amount of diazepam and they made a slight difference and eased off the symps a bit . then i had a course of vrt.....which seemed to help a little more.......so very small progress......and relapses......but never gone.....im trying to keep a diary since the beggining of the year, but cannot see a pattern as such.....sometimes when its fairly low i get my hopes up its on it way out.....but then its back again......so i would love to report its gone, but i can say i have seen at times small improvements..........
emsy i think i would have a hard time believing i was better too......i would just like a moment of feeling still when i am still, so i dont forget what its like....just want this gone forever......

take care

lorr

xx

Nice that I made you laugh Emsybobs :) I guess we need to laugh about this from time to time. And I agree it would be nice to see a glimpse of being normal, maybe then I could have hope that I was getting better. But like Star said I probably wouldn't believe it. :rolleyes:

Hi,

Ok so I am doing way better than I was so will chime in with a note of positivity.

I got this 3 years ago, I was chronically dizzy in the head (by that I mean that any head position still, sitting, sleeping whatever) I was dizzy feeling in the haed 24/7. I guess that lasted a good 10 months straight. In addition to that of course i had the false feeling of motion, jumpy vision etc etc. Then I felt almost normal and then had episdes of being off again. In hindsight I think that this was promted by sparadix attcks of BPPV as they always started with an extreme dizzy spell that would be brief but short and then the old imablance etc.

Then last year i got preg and the whole cycle (less the spinning) started al over again, felt horrible and it was unpredictable and scary.

Had the elpey done lots of times in Oct - Dec last year and the feelings of motion 24/7 stopped. I thne felt much as Rick describes totally horrible. But I just kept on doing stuff and moving and moving, no specific VRT though. I then stopped being dizzy all the time and the marbles and spinning in the head (not viusla) stopped more or less. I will form time to time get positional dizzyness that is brief or the feeling I am bout to be dizzy. But that tends to conincide with a bad patch always brought on by - doing lots physically, being very tired, having driven for housr and hours or being sick.

Its deff a very forward and then back recovery its no straight line.

I a now at the 3 year mark and have had the best 2 days in a row yet. There is hope, for me the good spells are getting better and better and the bad spells less bad if u get me. i know that I will get bad again but I trust that I will get better as I have done. Oh and last year I was just getting worse and wosre and more dizzy and nothing seemd to help for best part of 12 months. The ONLY things that have helped me is the epleys but more than that MOVING around quite simply as much as possible despite the feelings.

I really wish we could jus t wave a wand and be better!

Ilia xxxx

Hi,
I am approaching my 17th month with this and I can honestly say that I did not notice I was getting better until month 8. From Month 8 on the improvements were miniscule and I had to keep a record in order to even make them noticeable. It has not been until the past 2 months where I have had some almost 100% days. Even if I am having a great day, there are brief moments that I get that little blip. I still have problems when I need to an extensive amount of conversation, rain, being on a computer can give me a little jolt. All in all, I know I am getting better and who knows it may take a full 2 years or even longer, but I constantly push myself to get better.
My symptoms weren't nearly as bad as most on these boards but it still amazes me that it has taken this long a time to get better.
I also wanted to say that I too have the vestibular angel on one shoulder and the devil on the other. If I am having a particular off day and I concentrate on my symptoms, they can be more pronounced. But if I say to myself...give yourself a break, stop thinking about it....I can pretty much ignore those symptoms. However....there are days where I definitely know they are there.

all the best,
Kathy :D [/COLOR]

10 years (as of April 9th, 2004) and counting.

I would say I have had the most progress in dealing with my symptoms in the past three years. Counseling, different outlook, challenging myself to push past and enjoy life, and going easy on myself during the rougher moments has helped me in my strides to gain emotional and physical control.

Also, time has helped too. I feel that my body and mind has had time to adjust to the physical, emotional and personality changes that has accompanied this condition.

I am not sure if I am coping better because I have learned to, or if my body has compensated because it's healing OR I've been dealing with this for so-o-o long.

I've come a long way, baby! And I've still got a ways to go!

Take care. xo

Hi Wowweee, not sure if ive asked you this before but have you thought of trying other MAV meds as I believe youve only tried Ami??? Just a little thought xxx

Hi All

I'm new to the boiards although I have been perusing them for over 2 years. I'm in CT, male and 35 and was diagnosed w/ acute viral labyrinthitis/vestibular neuritis in Aug 2001, which casued permanent damage to my right side peripheral vestibular system and most likely central as well. After the acute vertigo phase and imporvement over the first 6mths.. I have been about the same - mildly diuzzy/lightheaded etc. 24/7... "brain fog" as many of us call it.

I've tried quite a few drugs like klonopin- but in the end felt most of them simply masked the symptoms rather than resolved them. The one thing I have fouind that helps on a "bad day" is Concerta (long acting ritilin) at a very mild/gentle dose. I do not like taking it very often as it is a stimulant, but on a bad day when I still need to function it helps me concentrate and get through the day. It is not unlike that sense of things being just a bit "clearer" after one has been exercising (yes, i am fortunate in that my condition is mostly the constant "brain fog"/concentration/mental fatigue/lightheadedness and not more severe vertigo that prevents me from partaking in physical activities - although my balance is far from perfect and I still must be careful.)

Anyway, I continue to hold out hope that I will hear about others who have had the same condition for over 2+ years and eventually have their brain learn how to compensate for the damage to the vestibular system. In the meantime, it is nice to know I am not alone and as we all know... continue to try to live our lives the best we can despite society, friends, and even family as a whole really not understanding how difficult our condition is to cope with and adapt to...

sorry for the long post.. as i said I'm new to the boards.

Welcome dsknicker...

We have the same diagnosis tho I havent got central damage (i dont think) how did you get that diagnosis and how much damage do you have in your inner ear???

Have you ever done VRT??? Do you or did you have the exaggerated sense of movement, councing ground, fuzzy eyes, intense dizzy in head feelings also???

You do sound like youve improved quite a lot which is good. Do you work and how do you find walking in the dark? Are your symptoms up and down??

Sorry for the questions. xxx

Hi Dsknicker,

We;lcome to the boards, i too have had labs 3 years ago and still have residual symptoms albeit like you i can function pretty normally wether I have symptoms or not.

I do still get variation in my symptoms, some days I am just fine most of the day, others I feel sort of spacey, light headed and just sinmply off combined with nausea. Dont you just love it.......er not!!

I seem to be the only one who doesnt get the brain fog, I really dont think I have this, albeit I have been like this this for sooooooo blooming long maybe I just forget to notice it. I seem to be able to concentrate as I have always done and when I cannot concentrate its more because I am soooo focused on the symptoms rather than brain fog.

Ok I am yapping on getting lost in my own thoughts.

So welcome aboard!!

Ilia

Hi Ilia, have often wondered about you and the brain fog thing as you have often said to me you choose to ignore it...I simply cant ignore it when it's bad it is so disabling! You said you do get the word finding probs and memory probs - brain fog is this and feeling v v clumsy, spacey, vacant and confused on top.

Lovely jubbly! xxx

Welcome dsknicker :wave:
I've been dizzy (no vertigo) 24/7 with periods of feeling off-balanced and other minor symptoms for the past 31 months (Sept. 02). I've never been diagnosed (all tests normal) but my symptoms are very much like Labs minus starting with virtigo.

You will find many friends here that understand how you feel. :)

I have just gotten results for my daughter's ENG. The ENT said there was only one abnormality and that was a failure of fixation suppression. He said it is probably something a neurologist needs to see. In his notes he says that she walks with a slightly wider based stance for balance and can not tandem walk. Everything else was normal. The reason we went to the ENT in the first place was for severe vertigo that my 16 yr. old has had for the past 6 months. Any info on "failure of fixation suppression" would be appreciated.

Lorie

Welcome dsknicker...

We have the same diagnosis that I havent got central damage (i dont think) how did you get that diagnosis and how much damage do you have in your inner ear???
Diagnosis was from a Doc at Yale. Said that since I had a normal rotary (chair) vestibular test that in light of my perisistent symptoms that there was most likely central involvement and that my peripheral vestibular fuinction had compensated nearly completely for the "event" (gotta love their terms) IN other words.. when you balance is pretty good and rotary chair testing is normal.. the symptoms are from the central vestibular system.

I also read this about what I think is also considered central involvement - on this board somewhere.. but I couldn't find where I saw it originally.

"---So---their(vestibular researchers)---hypothesis is:

--that the reason you have this problem as a vestibular patient is that your brain stem is affected. The brain stem is a stalk connected to the spinal cord. There are nuclei located in the brain stem that attach to your balance system; they are also highly important for keeping your cortex, your thinking areas, alert and aroused and attentive.

--They think---that since you're constantly fighting the mismatch from your visual input and your disordered balance system that a very basic mechanism -- a mechanism that was developed as you learned to sit and crawl and that influenced how you later manipulated objects and then walked and spoke and thought, a mechanism that's taken for granted and built into very fundamental habits -- could it be that something that fundamental is being distorted? That the vestibular and visual disturbance interferes with nuclei functioning within the brain stem and thus interferes with your sequencing of information and impairs and reduces your processing capacity?

---That is an intriguing hypothesis, exceedingly difficult to test

---Nevertheless it makes some sense, as anyone with a vestibular disorder can speak to

--- They think(guess) that you can get improvements through--training him- or herself to think again. As a vestibular patient, you must learn to move around in a slightly different-sized intellectual room. As you learn, just as in physical vestibular therapy...."

As for my damage or test results.. they were:
-Caloric testing showed 61% unilateral weakness on right side w/ left-beating nystagmus.
-Head rotations showed decreased function of r. lateral canal
-VEMP test showed zero response on the right side implying loss of saccule function.

Have you ever done VRT???
Is that the same as VOR - Vestibular Rehab? If so, then yes.... didn't seem to help much... but I continue to do it at home at times. My doc at John Hopkins (Dr. David Zee or D.Z. - pretty funy huh?!) is a big fan of Tai Chi and playing table tennis/pin pong to help promote compesnation/adaptation


Do you or did you have the exaggerated sense of movement, councing ground, fuzzy eyes, intense dizzy in head feelings also???

Initially xtreme vertigo.. took me about a mth before I could even attempt to drive... have experienced all those symptoms at some point., but now mostly a constant lightheadedness/mildly dizzy/brain fog and sensitive to rapid head movement..visually rich settings (i.e. train station, super mkt shelf, etc) take xtra focus/concentration... all of these things worsens with lack of sleep.

You do sound like youve improved quite a lot which is good. Do you work and how do you find walking in the dark?

I have worked on and off as a project consultant as I doubt I could do my old job w/ required me to travel alot and maintain a pretty crazy schedule. Walking in dark... lol... yes, that is a bit tough as is walking in tandem... but I can do it.. I just get off course a bit... same as if I am walking on a street and look at the person on my side that I am talking to.. i usually veer off to one side.

Are your symptoms up and down??
Yes, sleep is the biggest factor as well as how exhausting of a day I have mentally. I think weather perhaops sometime too..

Sorry for the questions. xxx

Hi dsknicker, a quickish post as have worked today and v tired...

Thanks for answering the questions...

I must say just cos your rotary chair is normal it doesnt mean central damage. They cant "suspect" central damage it would have clearly shown on the tests. Its unlikely to get central and peripheral damage at the same time. Also the thing about the brain stewm which subs wrote doesnt mean you have "central" dizziness, it is to do with inner ear patients having cognitive probs - the brain stem - is different to the brain. Hope you get me. I'd tend to think you just had peripheral inner ear dysfunction...

The VRT has to be religiously stuck to for months.

Your symptoms are similar to mine and many others here xxx