Just thought I would post for those who fall into this category:
I recently saw a top neuro-otologist who did every vestibular test and said they were fairly normal (she did ask me if I felt like I was moving to the left a bit when I walked).
She said I did not fall into the category of patient who suffers an acute spinning attack and then does months of VRT to correct itself.She said Im in the category where they dont exactly know what is wrong, but she suspected there was a problem with the synapses between my brain and ear, which can be caused by Migraine.
She has now put me on my migraine tablets to see if I can reach 100%.
Most days I feel 'fairly ok' like high 90's but just a bit spacey and 'off'.My vision is also not quite perfect.
The point is Im worried I have fallen into the 'never fully recover' catergory as I dont have a definitive diagnosis and from now it is a matter of testing different Migraine preventives which might not be the cause! Trial and error!
I can see this going on for years, being stuck on this annoying almost better plateau.Im not bedridden, dont feel absolutely horrendoues and can work, but I still want to feel 100% normal, something I dont think Im ever going to get to after 13 months of this.The months just go on and on with it never fully going.
Does anyone else feel like they are in the non typical dizzy category, where tjhey dont feel so bad they cant work etc, go out, but still are not NORMAL??
I feel I have got to a point where I might just have to bare this for the rest of my life- I clearly dont have any more compensation to do as VRT seems useless if in fact I do have MAV or something else!!!
I will see of the MAV tablets work- but is there anything else it could be but inner ear.The only thing is I have IMPROVED since I got this....maybe I do just have really stubborn case of VN...who knows.
So many questions and so little finite answers!
If anyone has fallen into this category and recovered after years please let me know!!!
I have been experienceing dizziness for the past 2 1/2 weeks. It's off and on but I do get it every day. I feel like I'm on a boat when i walk. I too can work (computer work) and driving is fine. I do notice it's worse when I look down. I'm noting that it does get better after I've eaten a meal. Not every time but usually. Maybe that's a clue. I also have some head pressure in the sinus area on and off. I have friends that have some dizziness too and they say it's their allergies. But I never had this before. Before the dizziness started I was getting some tingling in my fingers and left leg/foot area. I went to the chiropractor and through x-rays he found my axis was not lined up right. That is what's between the base of the head to the spinal cord. He says it could be the cause of the tingling. I've been getting adjusted and it seems to be getting better (sort of). but the dizziness is my biggest dilema. I have controlled the anxiety that comes with the dizziness. So I'm not afraid anymore. I made an apptmt. with my regular Dr. for tomorrow. We'll see what he says. Not looking forward to the Dr. Merry-go-round. So you're definately not alone. Don't worry and try to think positive healing thoughts.
yep....just like you Dizzyrascal......20 months of this stuck inbetween state. Don't seem to fit MAV or VN although I've been reading a book Hbep suggested "Heal Your Headache" and have to admit the more I read it, the more I'm starting to believe it could be migraine. Don't really understand how I can go from a virus/ear infection and absolutely NO headache problems before this to migraine 24/7. Everything I read too says that migraine comes on and goes. Well, I've never felt 100% fine in 20 months. Just when you think it is about to leave, wham it is worse. I too feel like it will never leave and it is a never ending battle of trial and error that could go on and on and on.
What did they prescribe you? Please keep me posted if you have improvement with the meds.
I'd honestly be happy if the tinnitus would just go....I'd just deal with the other symptoms.
It seems that I'm on my 20th month also, with one accute spinning positional vertigo attack, quick recovery with VRT(2-3 months), something like 9 practically dizzy free months, and a huge 9 month "relapse", "decomp", or you name it, wich lasts till now.
I'm into like my third good week, where I've even touched the 100% mark once, even with colds, sinus, and stuff wich came like an epidemic episode here in the city, where is raining like it hasn't rain for ages.
I'm between the nineties to high nineties mark, some bumps down here and there, continous VRT wich I believe has helped me a lot, not dramatically but little by little.
Same as you took all my Vestibular tests with neurotologyst back in February, ans much like you everything seemed normal but a mild right ear disfunction(found on the caloric test), so as it showed up there, much like you, the room for compensation improvement was quite low, even then, where I felt like hell everyday.
I do have a migraine story with some of my actual symptoms present years back, not the spinning, jumping or oscillating images and the unbalance tough.
My catch is that, as your Dr. said some MAV condition may be giving me the extra trouble wich doesn't let me get to the 100% mark and stay there.
Neverheless, what I'm trying first is to start a regular workout program, to get back in shape, and to get rid, or at least to control down to a nice level, all my allergies and colds, to make sure that they won't(colds and bad shape)interfere with my recovery.
Being in good shape and relaxed, helped me a lot with Migraine back where it gave me the most trouble, with headaches and all, so I believe this will help me for both things, MAV and "real" vestibular issues.
If this doesn't work to an acceptable llevel, I'll return to my neurotologyst for an specific MAV checkout and treatment, if necessary, to get rid of this once and for all.
The good thing is that controlling migraine and MAV is not impossible, so you can get a 100% mark feeling, if indeed that is what causes you trouble, but at the same time you can't cure Migraine, so you may have some blips here and there, but, if my almost non existent "real" migraine trouble with headaches and stuff, hasn't gave me any trouble for years, the odds are good for you too.
Even Dr. Rauch's video shows how migraneurs, even without an "oficcial" MAV tag on them, have more difficult time compensating from a vestibular injury than non-migraneurs, so if you put an average 2 years recovery time, give it some extra for a migraine condition, even if you don't have an "official" MAV Dx.
As I believe, unless some of the MAV connossieurs here correct me, what I can dig out of this Migraine condition is that, it interferes with the vestibular system faulty (due to an injury)signal's codification in the brain, keeping it(or them) in a constant variation, making it difficult for the brain to compensate for them properly.
This is also true for some colds, wich coud get your inner ear cloughed and soar, changing the signals again, and the same goes to stress and anxiety, wich in their way interfere the brain and it's compensating task, and so on.
So as a cold could make you dizzy, and this could give you anxiety and stress, and this eventually migraine, with all the viceversa associated, well it's easy to see why some of us have some extra time & trouble with our recovery.
My only advice is to try to get rid or at least to control one by one all of the possible tampering factors, untill you get well. As I remember your'e quite acrive, quite in shape and quite young, and even with some bad days, quite recovered too, so I think you're on track, just be patient(and I bite my tongue saying this).
Keep it up, hope that new treatment helps you out, post if you feel some sudden recovery with this, cause it might be an indication that you hit the spot, best wishes.
Am right there with you, Dizzyrascal.... Came down with this 1 yr 9 mos. ago, and am still dealing with vestibular symptoms that I just wish would GO AWAY!!!!!! I, too, can work, and pretty much do most anything I want to, but many days I just don't feel at all well as I do it. Some days are just absolutely horrible. I miss that normal feeling, and I, too, hate the prospect of dealing with the fact that I may feel this way the rest of my life. I keep reminding myself that I am much better than I was a year ago, so I can only hope that 1 year from now I will be able to report that I am even that much better. Interesting that Dr. Rauch mentioned on one of the videos in the Information Archive that people with a history of migraines have a much longer recuperation period. I'm hoping that's why I am taking so long in recovering. (I don't have typical MAV sympt., and my ENG showed distinct weakness in R ear, along with typical VN symptoms, so I'm not being treated for MAV currently.)
Do hope you have much luck with the new meds. By the way, I'm interested in knowing if your neurotologist mentioned any of the vest. suppresants as a last resort. I finally got so desperate to get my life back that I started 2mg. of valium last Feb. - it helps, but it doesn't make me feel 100% by any means. Well, we'll all keep pressing on together..... at least we're not alone in this!!!!!!!!!
Yep I know this feeling totally. For me (I hate to say it... don't want to get anyone down) but I've been stuck with this dizzy/visual vertigo feeling for nearly 6 years... can you believe it. My diagnosis is MAV, with accompanying visual vertigo - as other posters have said, MAV as I understand it interferes with vestibular compensation - so you don't have to have headaches at all to have MAV - as some migraine occurs without headaches. I'm seeeing Prof Luxon in the UK who is one of the top experts on this condition in the country, and apparently I classically fit the MAV pattern - long term dizzies, fairly constant feeling of being 'off', spaced out, worse in busy visual situations. Anyway, I'm about to start a treatment trial at the National where they are using new vestibular treatments for people who haven't responded to Cawthorn Cooksey and other vertigo PT. I'll let you know how I get on, first session tomorrow!
I say - keep positive, keep trying to work out what it is, and also if it is MAV, a food diary is really helpful - are you worse after particular foods/drinks etc.
DR: Remember that ENGs don't show us the whole picture, so it's perfectly possible (and quite likely) that even someone with moderate vestibular dysfunction (of the type caused by VN/Labs) can have normal ENG results (they only test 1 of the 3 canals at certain frequencies). Incidently those with MAV may have a caloric weakness.
There seems to be a trend at the moment for when people have had vestibular problems for sometime then neurotologists are suspecting MAV and handing out the medication... To some extent this is warranted as a positive response to anti-migraine medication is considered to be a diagnostic sign, so it's worth a trial in a lot of people.
The fact that someone is far better than a year before would be consistant with a stable diagnosis (ie VN, LABS), where as MAV is more likely in fits and spurts - though as most of this stuff is objective then it may be hard to tell. It's quite common for people with well defined stable vestibular insult (ie VN, labs) to fail to recover in the normal time period (through central compensation, the process where the brain adapts to the vestibular dysfunction) - infact some studies put it as high as 60%, without a personallised VRT program some of these will never fully compensate, but once they get VRT the recovery progresses. I think it's also fair to say that in some cases compensation occurs slowly over a long period of time (2+ years).
Even if compensation is pretty much complete there will always be a weakness in that persons vestibular system, so activities out of the normal run of life can cause symptoms (ie violent head shaking, roller coasters etc etc) . It's also not unusual for somebody to fully compensate only to occasionally decompensate, which means a return of their symptoms, this is usually caused by stress, illness (even a cold), holiday, alchahol.
The point of this post is not to scare you (afterall the MAV meds will hopefully be effective), but to try and demostate that even if the problem is VN/LABs it can, and often does, take a long time to improve, but the fact you are a lot better than 12 months previous is a very positive thing, and you should carry on improving.
Last edited by billybignose; 09-21-2006 at 11:55 AM.
60% of people that don't do vrt will never fully compenstate?
vrt is just basically a thing to do to keep your brain moving to compensate for damage in the inner ear. the excersises you do are sometimes no diffrent really than going out and being active. i do think vrt is a good thing to do. not exactly needed though to get better. people can do vrt for a year and not feel much better and another person won't do it and feel just as well as the person who did do it. alot of people on this board come back and say after a year or 2 that they are much better and never did vrt.
think about the people who had this junk before vrt was even around. i don't think even back then was labs or vn a life long illness.
infact some studies put it as high as 60%, without a personallised VRT program some of these will never fully compensate, but once they get VRT the recovery progresses.
60% of people do not recover in the 4-6 week period which is often touted as the standard "recovery". (I suspect the figure is a lot lower than that, as any study will only be carried out at specialist centres - and as the vast majority of quick recoveries will happen before they ever get a referal.. but I think it illustrates just how common it is for vestibular stuff to carry on for sometime. )
Another study shows that once people get past the standard recovery time then progress without VRT is often slow or limited (though often other aggrevating factors are involved). It probably isn't correct to lump these two results together which is why I put some, but I think it's fair to say there are a fair few people who without VRT will not improve.
By VRT I'm not refering to generic exercise sheets (aka Cawthorne Cooksey), which have been shown to speed recovery time but not increase the rate (ie they make those who would improve anyway, improve faster), I'm meaning tailored VRT courses carried out by a qualified Herdman qualified physio, which have been shown to be about 95% efficient.
The point I was trying to make, is it can take a long time to recover from VN/Labs and for a lot of people that takes far more time than the 4-6 weeks which often gets mentioned. So don't get too disheartend, there are plenty of people who keep on improving, and eventually recover months/years down the line.
Sure, for a small minorty progress is very slow or none existant, but there is usually some interfering factor which stops them from recovering (stroke patients or people with CNS damage for example - all of which are usually very obvious so not something to concern yourself with). For others, a secondary problem (such as anxiety, depression, or unrelated illness) can slow down or stop the compensation process, and once the other conditions are treated then compensation gets back underway.
Bottom line is, keep pushing yourself, but don't overdo things.
Just to let you know this MAV medicine (Pitozifen) makes you feel pretty drowsy and more spaced out than usual, which is annoying as its meant to make you feel better!!!
I suppose it takes time to get into the system properly and take effect.
I'm sorry you guys have suffered so much and I feel like we have all done 'our time' with this junk and we should be given a break.
I wont lie, but I am honestly very scared of having to live in this altered state at the moment for life,not really being able to enjoy the best years of my life (Im 23) without any proper explanation as to what is really wrong with me.Science is just not advanced enough to know.Who knows what I have MAV, VN perhaps even Diabetes or something.
I will give it another year and see how I am, then I will look down different avenues than Inner Ear.
I know exactly how you feel. My inner ear problem started w/ just feeling a little dizzy at the gym and then at work and then one day it hit me where I just felt that way all the time and it just wouldn't go away. I went to every ear doctor in my area and then also the Mayo clinic which is supposed to be one of the best hospitals in the U.S. where they look down many avenues to see what you may have. All of these doctor's....gave me different diagnosis's from Mienere's disease, to anxiety to vestibular nueronitis.....and finally I just quit going to all of them b/c I really don't think that any of them have a clue as to what I have or how to figure it out......also my health insurance ran out too!
My inner ear tests were pretty much normal, and I have been doing VRT for about a year. I just feel stuck in this weird state. I can get through things.....but life just isn't much fun anymore. I sat by for a year watching all my friends go to parties and on trips and loads of fun things while I sat at home.....now that it's my second fall to miss out on things I am really bummed. I just don't know how to except this state of being and that this is just it for me from now on. I really feel for you being 23......I was 29 when it hit.
Lauren I can identify with you completely. I started with this illness by just feeling a little dizzy for a few months before it really hit badly.
I too have had a few tests, not enough in my opinion, which showed nothing. And, I too go through life 'just getting through'. I feel frustrated that although my balance specialist says I have VN, I have not been properly diagnosed. If it was not for the internet and these specialist sites I would have given up long ago.
My life has changed although I can still accomplish most things so I have to be happy for that. I don't go out socially at all now, the most I can manage is a few meals out with my hubby. I can't book anything in advance because I don't know how I am going to be. And, over time you get the impression that no-one REALLY knows what you are going through.
But, we must be thankful for what we have got and try and be positive. This is the only thing that keeps me going at times - positive thinking and I think that this goes a long way in helping us to recover.
Dizzyrascal - you are so right, just give it time. I have had this for 16 months now and compared to the first five months of having it I am sooooo much better. You will get to that stage if you keep active and keep positive. It is so sad that there are so many young people with this illness, and it will be hard for your friends to understand too as they are so young, but hey, you can make up for it big time when you are feeling better and I am sure you will.
One thing that does come out of this thing is that you look at life so differently. You have more tolerance for other people, I know I do. You never know what that stranger you meet in the street is going through in their life and you get to be more patient with others. This in itself makes you a better person.
Just a couple thoughts. I too am 23. I got this last september and so now it's been about 11 months with it. Diagnosed as VN and told it would last a few weeks.. Welll hey, guess what, it didn't.
there are times when I feel really good, like 100% every now and then. But as soon as i get high thinking i'm feeling good and i'm finally better (exercize makes me feel better by the way) i get knocked back down and feel like crap. that's when the anxiety gets going because i too think "OH MY GOD I'M 23 AND I HAVE TO LIVE THE REST OF MY LIFE WITH THIS SH*#!!!" And I get really scared. i then worry if i have all these different diseases etc. it stinks.
And my friends, they don't get it really, everybody looks at you kind of like "wow that stinks, glad that's not me" but then there are others like my family who offer support. the good thing is i can be active, i work out, graduated from college, and work and all that.. lead a pretty "normal" life you could say, but this head thing is CONSTANTLY on my mind. I get up, testing it out, wondering how its going to feel today. Not always fun but you got to keep trying, keep being positive, because it will make you feel better.
Trust me the times i felt depressed or scared my head feels worse. Also, for me, i changed my diet completely. I eat so flaming healhty it's rediculous. So Rascal, if your worried about diabetes or whatever, just start eating like me, haha, and frankly, you don't have anything to worry about anymore. Because here's what i found out. You take care of the things that you can, eat healthy, exercise, research your health ailment and do what you can, and after that, let what will happen, happen. Otherwise your just worrying about what you can't control. I started doing this and that's when i noticed the improvement i got a few months ago. it helps a lot.
But anyway, I'm rambling so i'll stop. But by the way, where are you from dizzy?
Thanks for the positive post.I too have felt nearly 100% at times and I lead a 'normal' life I go out, work etc etc, just still have this spaced out head with dodgy vision!
I am from London,UK.I really hope you get rid of this....I'm sure you will as it sounds lke you're doing well.As for me I have kind of plateaued at the moment in the 85-98% range.but there you go....!!!
I was 23 when this started for me too (sounds like the "fashionable age" to get this huh?) - that was 7 years ago, don't panic though as most people aren't ill for as long as me.
For me I've had a few times where I've felt a lot better, and others where I've felt pretty rough, and lots inbetween. My physical symptoms were probably at there best about 6-8months in, then it just kind of unravelled, though I did have a reasonable year in 2003, until I injured my back which kind of added to things.
Now while I doubt any of you will have problems for as long as me (most people don't), I just wanted to let you know that live goes on and things get a lot easier and you get better at dealling things. Physically I have a few more issues now than I used to but I'm so much better at dealling with this stuff, I feel more incharge and don't feel as helpless as I once did. Since I've been ill I've done all sorts, I've set up my own business and make a good living, I've setup home, visited places, I swim 3 times a week, I cycle most days - obvioulsy there are things I've missed out on, but thats life...but it's certainly not all doom and gloom...