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Old 10-10-2006, 03:24 PM   #16
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Re: bilateral vestibulopathy

Yes, vertigo at the begining then subsiding is classic of any vestibular insult (vestibular neuronitis for example), as once the initial damage is done a mechanism kicks in allowing the brain to turn off/reduce the worst of the faulty signals, then it's down to the fine tuning process - there is a far better description below... The virus only lasts for a few days (maybe a week or so), but steroids in the very early active stage have been shown to slightly reduce any damage caused - however it's quite rare anyone gets to take them, as GPs wouldn't know to prescribe them and it's often a month or so down the line before anyone gets to see a specialist at which point they won't be much use...


I wouldn't go out and get drunk everynight (obviously it would interfere with compensation) but the odd glass of wine won't hurt.

Increasing activity slowly is the key, little and often, and it's best to build up to going to bigger stores (the supermarket was a big no no for me )..

It sounds like your PT is going alon the right lines..






Quote:
Vestibular Injury:
Compensation, Decompensation, And
Failure to Compensate

By Thomas E. Boismier, M.P.H.
Director of the Balance Care Center

The balance system of the inner ear and brain can be damaged in many
ways. Viral infections (labyrinthitis and vestibular neuritis), disorders that
affect the fluid levels in the inner ear
(Ménière's disease and endolymphatic hydrops), trauma from head injury,
benign tumors (acoustic neuroma), and degeneration of the balance organ
cells with aging can all cause permanent damage to the balance organ or
balance nerve.
When the balance system is damaged, it has little ability to repair itself.
The body recovers from the injury by having the part of the brain that
controls balance re-calibrate itself to compensate for the unmatched signals
being sent from the damaged and well ears. This compensation process
occurs naturally in most people. Some patients require help from vestibular
rehabilitation therapy in order to recover from an injury to the balance
system.

Acute (Immediate) Compensation
When a sudden injury occurs to one side of the balance system, the
patient may feel very sick for hours to a few days with a spinning feeling,
unsteadiness, lightheadedness, and often sweating, nausea, and vomiting.
This is because the signals being sent from the two balance organs are no
longer equal and opposite, and the brain interprets the difference as
constant movement. Researchers theorize that after this initial period, the
brain recognizes that the signals being received from the ears are incorrect
and turns the signals off through a process called the cerebellar clamp.
When the clamp is in place, the spinning and much of the 'sick' feeling
improve. The patient feels unsteady while standing though, because the
balance organ signals normally used to maintain balance have been turned
off. The patient may also report dizziness or blurred vision with movements.
Vision and proprioception (the sense of pressure at the bottom of the feet)
are also used to maintain balance, so the patient can walk but will feel
unsteady and may fall in the dark or on soft or bumpy floors like thick
carpet, grass, or gravel.
At this point, most patients are well enough to get out of bed and visit a
doctor. The doctor
sees a person who is not spinning but whose gait is ataxic. If the patient is
not given an opportunity to clearly describe what has happened, he or she
may be immediately referred to neurology to rule out stroke because of this
ataxic gait.
If balance testing is performed during the acute (immediate)
compensation phase, test results may incorrectly suggest that the patient
has damage to both sides of the balance system, because the cerebellar
clamp reduces the eye movements that are looked for during balance
testing. The cerebellar clamp may persist for days to a few weeks after the
initial injury.

Chronic (Long-Term) Compensation
During the acute compensation phase, the cerebellum slowly releases
the clamp, gradually allowing more signals from the balance organs to pass
to the balance areas of the brain. As the brain receives these signals, it fine-
tunes the mathematics performed to interpret the information, in order to
account for the difference between the ears. The brain must receive signals
from the balance organs to be able to modify its interpretation of these
signals.
For most patients, the movements made during normal daily activities
are enough to achieve chronic (long-term) compensation, usually in two to
four weeks after the injury has occurred.
Once the chronic compensation process is complete, the patient is
essentially symptom-free. If unsteadiness and/or motion provoked dizziness
persist after that time, compensation is not complete and the physician may
prescribe a program of vestibular rehabilitation therapy (VRT).
VRT is a treatment program administered by a specially-trained physical
therapist. It is designed to provide small, controlled, and repeated 'doses' of
the movements and activities that provoke dizziness in order to (1)
desensitize the balance system to the movements, and (2) enhance the fine-
tuning involved in long-term compensation. VRT is most effective when
administered by a physical or occupational therapist who has special
training and specializes in this unusual form of therapy.

Decompensation
It's important to remember that even after the symptoms go away, the
balance system remains injured, and the brain has simply adapted to the
injury. For many patients, dizziness will return months or years after
compensating for a balance system injury. It is critical for the physician to
find out what type of dizziness the patient has. If the patient describes
another severe attack of spinning with unsteadiness and nausea lasting
hours to days, this suggests that a second injury has occurred to the balance
system, such as another viral infection or an attack of Ménière's or
endolymphatic hydrops. These conditions require diagnosis and medical
treatment. If the patient reports that dizziness occurs after particular
movements and lasts seconds to a few minutes, this suggests
decompensation. Decompensation simply means that the brain has
'forgotten' the fine-tuning procedure it developed during the chronic
compensation phase described above.
Events that can provoke decompensation include a bad cold or the flu,
minor surgery, long vacations, or anything that stops normal daily activity
for a few days. Recovery after decompensation is exactly like the recovery
that occurs during the chronic compensation phase.
Movements and activities are the stimuli the brain needs to fine-tune the
system. In our balance center, we routinely counsel patients to keep their
VRT exercise program instructions in a drawer even after they recover so
that they can begin the exercises immediately if symptoms return.
Usually recovery after decompensation is quicker than the recovery after
the initial injury to the balance system.

Failure to Compensate
Two things are required in order to compensate for an injury. First, the
brain must receive signals from the balance organs. This means that
movements must not be avoided, because movements create the signals the
brain needs to compensate for the injury. Secondly, the balance areas of the
brain must be capable of change.
During the early stages of dizziness, many physicians counsel their
patients to avoid quick movements and reduce their activities. Most patients
will be prescribed one or more anti-dizziness medications such as Antivert
(meclizine), Valium (diazepam), Xanax, Phenergan, or Compazine. This is
fine during the acute stages of a dizziness problem in order to reduce the
dizziness symptoms that persist for hours or days even when the patient is
not moving. However, once the acute phase is past, inactivity and
medications can interfere with the long-term compensation process. Any
medication that makes the brain sleepy, including all of the anti-dizziness
medications, can slow down or stop the process of compensation, so they
are often not appropriate for long-term use. Most patients who fail to
compensate are found to either be strictly avoiding certain movements,
using anti-dizziness medications daily, or both. Treatment includes VRT,
gradual reduction, and eventual elimination of these medications.
Brain damage caused by stroke, head injury, etc., can slow down or stop
the natural compensation process. It is difficult to predict which patients with
brain injury will improve or how much, so all patients should be given the
chance to improve through a VRT program. In our balance center, we use
several different measures of symptoms and functional capabilities in order to
assess progress repeatedly as treatment goes on. As long as a patient
continues to show improvement, even if it is gradual, treatment should be
continued.

 
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Old 10-10-2006, 06:12 PM   #17
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dizzybraod HB User
Re: bilateral vestibulopathy

Wow! Why in the world is it so hard to find such easily written information! That was perfect. I can't believe most people who suffer from this don't have this info immediately. You're the best. When did you get this and how are you?

 
Old 10-11-2006, 04:08 AM   #18
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billybignose HB User
Re: bilateral vestibulopathy

Thats exactly what I thought when I read that article...

I'm not a good case to compare with, as in my case there are a few aggrevating factors, and it's looking more likely that my problem is "unstable" (ie not caused by a one-off attack such as a virus, but by fluctuating function (some sort of blood flow problem (migraine variant) is a possibility)). I've had problems since Nov '99 (I was 23), but I vastly improved in 2000, so much so that even though I was still symptomatic I could pretty much do everything. However, later that year I developed some other health problems which seemed to worsen my condition. Since then I've been up and down with it, fortunately I don't think my symptoms have ever been as bad as the were initially (thank god!!), but I've also never felt as well as I did six months in. Things were complicated further by a back injury in 2004, which also effects my balance. Once every few months I have a sudden worsening of my symptoms which slowly improve over the space of a month or so, this is probably more indicative of some sort of active process, rather than failing to compensate. That paints a pretty bleak picture, but in reality I can carry on pretty much as normal, in that I run my own business, cycle most days, swim 3 times a week, I just find it heavy going. In general I'm the exception not the rule, and while there are certainly lots of people who don't recover in the alotted "6 week recovery period" (about 40% to be precise) all but a very small minority of those recover over a period of months, and with the help of VRT the success rate is even higher and results achieved quicker.

 
Old 10-11-2006, 09:43 AM   #19
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Re: bilateral vestibulopathy

You're such a young man for all of this. So weird isn't it? I often wonder what I did to help this along. I know now it could be worse. We could have cancer. I certainly thought I was dying in the beginning. How in the world did you do it? Were you married or did you have to move back with parents? I am lucky to have been married for 25 years to a great guy. I needed so much, I was a complete invalid. He did all the shopping and laundry (I thought it was good for him to know what it was like to be a working woman and he had to help me to the bathroom for the first couple of weeks and then he had to help me shower for weeks after. He would just laugh at how in our 25 years together our showers together have taken a change. He is incredibly supportive and put up with my depressive moments too. I have a confession though, he is an emergency physician and he is the one who started me on steroids although he regrets waiting 5 days. He says when he sees people now with labrinthitis, he agressively starts them on prednisone now. I hope that I do get over this. I'm so glad to hear you can do your own business. I can't go back to work yet ( I had been working with my husband in a very busy ER) but if I could do something at home on the computer, I still can only do that for an hour or so. As a matter of fact, if I want to make myself more tired, I work on the computer. I am so tired all the time. I can take a 2.5 hour nap and still sleep 9 + hours at night. I am usually worse in the mornings which seems so odd to me.
I used to walk 6 days a week for 4 miles. Today I did a slow version of the same walk, cut off a little and my hip is killing me. I have to stretch first, ice it after. I walk with other people. At first, I could turn my head and walk straight without going unbalanced. At least now I can look for cars while walking forward. I hope I get better and I hope that if I have episodes like you in the future, I remember you and your good attitude.

 
Old 10-11-2006, 11:38 AM   #20
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Re: bilateral vestibulopathy

oooppps double posting

Last edited by billybignose; 10-11-2006 at 11:41 AM.

 
Old 10-11-2006, 11:40 AM   #21
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Re: bilateral vestibulopathy

I can well relate to those dying sensations - however, a few years before my dizzy problems I suffered some sort of short lived anxiety disorder, which included bouts of derealisation which thankfully only lasted a couple of weeks, but when my dizzies started I just thought it was that comming back so I kept pushing myself thinking it would go away (I even went surfing in the first few days of it), so I wasn't greatly concerned at first, but over the space of a week or so it kept getting worse and affecting my balance more profoundly, until it reached a point where I couldn't walk anywhere without the world turning into a swirling mess - at that point I knew there was something else going on, luckily my GP at the time was on the ball and worked it out straight away, though that was little comfort to me.

Several months before the dizzies started I had started to work for myself (I write computer software so work from home), which in some ways was godsend, though it does mean that it's to avoid that essential stimulae of the outside world. I was living with my partner and she looked after me for the first few weeks (though it doesn't sound like I was severly affected as you), though 2 weeks in she had to go for her university graduation which mean't being on my own for a week - a major panic attack insued, luckily my parents came to stay for a few days, though by then my symptoms had gone mad (and anxiety had kicked in)... I've lived with partner ever since but we've decided to split up recently so I'm currently contemplating the implications of that - on a practical level it's no problem as financially I'm ok, and I do my fair share of the housework (my girlfriend doesn't cook at all), but as you imagine it's still quite an undertaking.

When I was at my worst the tiredness and sleepiness was a major issue, however now it's not a problem, so I'm sure it in your case it will pass relatively quickly. For me the anxiety side of this became a major issue, it's very common in people with vestibular problems, because the vestibular system has a direct link to the automic nervous system - the reason I mention it as if that happens to be an issue for you (it might not) then it's good to know that it's all part of this stuff.

It sounds like you making improvements already, which is great.. long may it continue...

 
Old 10-11-2006, 01:39 PM   #22
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Re: bilateral vestibulopathy

Quote:
Originally Posted by billybignose
I can well relate to those dying sensations - however, a few years before my dizzy problems I suffered some sort of short lived anxiety disorder, which included bouts of derealisation which thankfully only lasted a couple of weeks, but when my dizzies started I just thought it was that comming back so I kept pushing myself thinking it would go away (I even went surfing in the first few days of it), so I wasn't greatly concerned at first, but over the space of a week or so it kept getting worse and affecting my balance more profoundly, until it reached a point where I couldn't walk anywhere without the world turning into a swirling mess - at that point I knew there was something else going on, luckily my GP at the time was on the ball and worked it out straight away, though that was little comfort to me.
Billy what is your current "official" Dx? And what treatment are you on right now?

 
Old 10-11-2006, 08:59 PM   #23
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Re: bilateral vestibulopathy

dizzybraod,

I can completely relate to what you are feeling. I am a very healthy and active 21 year old female. I was diagnosed with labyrinthitis in Feb '06 and it was like being slammed into a brick wall. My whole life was changed. I was bedridden for 3 weeks and lost 10 pounds because I couldn't eat due to the nausea. Being a working college student, this was very very difficult for me as I couldn't go to class, work, the gym, or go out with my friends - everything I was supposed to be doing for my age!! After about 6 weeks I had finally recovered enough to return to work and I began seeing someone for vestibular therapy. I worked on all kinds of balance exercises and I believe they helped me improve my condition. Granted, my right ear is permanently damaged by a virus, but my brain learned to compensate for my balance and coordination problems. It's now 7 months later and I am feeling about 90% recovered. I have gotten over the anxiety of living with such a frightening condition (the random dizzy spells, nausea, panic attacks, worry) and now I do all the things I used to with the occasional dizzy spell that only lasts a few seconds compared to roller coaster I have ridden for the past half year. FYI, the only test that revealed anything for me was the ENG and that is where they suspected the damage to my right inner ear. Your best bet is to stay as active as possible and don't let the bad side effects get you down. You can definitely beat it, and believe me, I did not think I would be standing on the other side of this! I thought I was going to go my whole life feeling dizzy and nauseated. Just try to live your life as your normally would, and most of all, relax, because the stress and anxiety only make it soooo much worse! Best of luck and stay positive!

 
Old 10-12-2006, 02:29 AM   #24
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billybignose HB User
Re: bilateral vestibulopathy

Stargrave: I was dx'd a few years ago with a very vague "peripheral vestibular dysfunction", probably caused by a virus (ie vestibular neuronitis), but as time progresses (and symptoms change) that looks more and more unlikely..

I'm not really on any treatment - I've been plugging away at VRT exercises since 2000, though I'm slightly less enhusistatic about them now, but I find they help control some of the symptoms and as soon as I stop I start to go downhill (though sometimes I go downhill anyway)..

Last edited by billybignose; 10-12-2006 at 02:34 AM.

 
Old 10-12-2006, 08:50 AM   #25
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Re: bilateral vestibulopathy

Quote:
Originally Posted by billybignose
Stargrave: I was dx'd a few years ago with a very vague "peripheral vestibular dysfunction", probably caused by a virus (ie vestibular neuronitis), but as time progresses (and symptoms change) that looks more and more unlikely..

I'm not really on any treatment - I've been plugging away at VRT exercises since 2000, though I'm slightly less enhusistatic about them now, but I find they help control some of the symptoms and as soon as I stop I start to go downhill (though sometimes I go downhill anyway)..
I know what you mean... that's why I posted something about a difference between a relapse(new event, or unstable lesion) and decomp.

I'm reaching the two year mark(counting Nov 2004 as the first strike) with this problem, wich in terms of constant trouble it actually aggravated this year, with some new symptoms, wich are common vestibular issues, but were completely new stuff for me this year, so It do feels like something new, since it wasn't there before, for a whole year, even as my tests and Doctors opinion show otherwise(marking it like an "old" lesion)

And much like you, don't know if this is psychological or real, but I feel that VRT has helped, but I'm not able to "lock" permanently at 100% yet, and sometimes when I quit on it(VRT), I feel like all what has been learned(by my brain that is), begins to recede, and I get some symptoms again and can't endure some exercises again...

So even as I'm in an overall sense beetter, what is a bummer is not knowing how to "induce" that permanet 100% lock, since this comes and goes all by itself, making me feel sometimes just like a helpless spectator, and being from that 100% where I thnk "yeah! it was not big deal", to that 20-30% where I fell like dying, it's quite exhausting.

Don't get me wrong, I'm optimistic and confident, I was able to get a 100% even with a cold all over me, but I just want to get some certainty on this, even if this means that I've to get used to have this all my life(knock on wood anyway ), because not knowing what is actually happening, laves me practically clueless on what to do next.

Of course it all helps, healthy life, optimism, acitvity, VRT, and I encourage everyone to do this, specially on the first stages, and it might be the difference in the long term, but for me this has become, not only a time consiming, but a mind consuming drill, where much of my thinking resources are on a daily quest trying to find out anwers, and specially a cure.

And believe me that when I find it, I'll be delighted to share it with everyone.

Last edited by stargrave; 10-12-2006 at 08:56 AM.

 
Old 11-01-2006, 06:27 PM   #26
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Re: bilateral vestibulopathy

My first ENG was 7 weeks into my vestibular problem. It showed bilateral vestibulopathy. I just had another ENG 3 months later. I now show very mild response bilaterally with the right ear being 4% greater than the left. I still have the oscillopsia. Sure wish that would go away. Still isn't safe for me to drive the freeways yet. The PT said he thought the oscillopsia would go away. Sure hope this is right. Over 18 weeks of this and I'm sick of it. All I do is either vestibular exercises or exercises for my other muscles which deteriorated (my right hip and right shoulder). Between exercising and going to PT, I do little else. I am able to grocery shop without too much trouble though. Is this going to get better??

 
Old 11-02-2006, 04:14 AM   #27
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Re: bilateral vestibulopathy

Dizzybroad: Most labs consider anything less than a 20% difference to be within the normal range, partly because the equipment is so insensitive, but mostly because it's normal to have some variation between sides... Calorics once reduced, will stay permenantly reduced (unless the subject was in the throws of a spontaneous attack/had the "cerebellur clamp" mechanism in action)..

I truely believe the oscillopsia will go. I know for me when I was at my worst it was truly terrible, and it doesn't bother me at all now (except when my dizzies are really messed up - but as I've said before I'm not a "normal" case). Your brain will soon figure out how to make use of the vestibular signals you have, and the oscillopsia will go - I found gaze stabilisation exercises work really well, but I guess it's all how it fits in with your PT's other exercises..

I know it feels like 18 weeks is a long while, but it really isn't, infact it's still early days - thats not to say it's going to be months and months before you find relief, just that it's not unusual for things to go on that long infact it's quite common. I'm sure you are a lot better now than 18 weeks ago (if not feeling much better I bet you can at least do more) and it can take a long while, but I'm sure you will keep improving and improving. I know for me when I was at my worst it took 2-3 months before I felt any improvement at all, and then all of a sudden I felt a little better everyday, and within another month I was able to do most things (not symptom free, but it was such an improvement)..

Last edited by billybignose; 11-02-2006 at 04:15 AM.

 
Old 11-02-2006, 02:35 PM   #28
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Re: bilateral vestibulopathy

Thanks for your support. I actually don't have anyone I else I can express my frustration with. I am really a very up person and have always felt happy and positive almost all of the time. Consequently, no one I know is used to listening to me complain or express my sadness over this. I just keep it to myself so I do appreciate "talking" to others who understand. Do you get tired of holding the rest of us up? I'll try to help others too when I get better. Actually, you are right. I am better. Beats the first 3 months of constant nausea and feeling that a good day was showering (with help), going downstairs and sitting on the couch to watch endless hours of mindless TV. Thanks...........

 
Old 11-09-2006, 09:08 PM   #29
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Re: bilateral vestibulopathy

Yesterday my physical therapist told me that my insurance will only cover 2 more visits. I am so frightened to not go because it has made me so much better but I am still symptomatic. When I took 2 weeks off to go on a preplanned vacation, i went backwards. Was it hard for any of you to stop going to PT?

 
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