• Compensation

    Vestibular Injury:
    Compensation, Decompensation, And Failure to Compensate

    By Thomas E. Boismier, M.P.H.
    Director of ENT | Balance

    Published in the Winter 2000 issue of On the Level, the quarterly newsletter of The Vestibular Disorders Association

    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.
    This article was originally published in forum thread: Compensation started by TomBoismier View original post
    Comments 22 Comments
    1. macbabe's Avatar
      macbabe -
      Endolymphatic Hydrops is a part of my life now and occurs in different degrees every-time it decided to rear it's ugly head. The explanation of "decompensation" about how the brain simply 'forgets' the fine-tuning procedure is spot on in the above write up.
      Having recently joined a bowling team, when I release my bowling ball sometimes, I notice I tip like a tea-pot and laugh it off and carry on.

      Knowing at least what's going on when it happens now, takes a lot of the anger out, and the frustration of "why is this happening to me" sympathy trip I would go on to find excuses to stay at home and hide in my cocoon. Being armed with LOTS of information and some offense-defense measures when it strikes has calmed my nerves dealing with this disorder.

      So I say to those out there going through the same stuff, be patient, stay positive, and grill your doc and PT with questions and learn and understand everything you can, there are no stupid questions when one is dealing with their own body!

      *peace*
      Mes
    1. ellieanne's Avatar
      ellieanne -
      This is such a helpful article. It's all so amazing and mysterious, but raises some questions.

      How is the brain able to determine that the vertigo incident requires a Cerebellar Clamp?

      How are we able to navigate with the vestibular system disabled?

      If we can do well with the Clamp in place, why doesn't the brain just keep it in place permanently?

      I have read where people with brain damage recover completely. Does the brain reroute?

      Can the brain "forgetting" be the brain testing to see if healing has occurred and it can stop compensating for certain situations?

      Thanks much!
    1. DizzyDame's Avatar
      DizzyDame -
      Thank you, Tom, for this informative article. I have a question. Is any part of this compensatory process possible when symptoms are caused by superior canal dehiscence? It is my understanding that the disconnect in signals occurs due to the abnormal presence of a third window through which signals are directly introduced to the superior canal from it's contact with the dura covering of the brain thus circumventing the usual pathways. I've been told the only "cure" is surgery and I don't want to undergo a craniotomy. I'm looking for ways to be able to manage to continue driving and working. Thanks.
    1. soldier's Avatar
      soldier -
      Thankyou. Very clear and informative. I will be returning to read it again a good few times.
    1. AlexODC's Avatar
      AlexODC -
      Thank you for this - it's been difficult deciding how best to approach getting back to normal - stepping out of my comfort zone seems to be the way to do it - I have indeed been avoiding specific movements and staying very still. I shall be brave, and move around instead.
    1. disco's Avatar
      disco -
      Very well written ... clear and concise.
    1. David Stephens's Avatar
      David Stephens -
      Sounds very familiar. Wish I had found this information long ago. The website as a whole, even from a quick browse, is great.
    1. pombonted's Avatar
      pombonted -
      Hi Tom,

      I originally posted here with a question about "failure to compensate". You addressed my issue and suggested that migraines may be interfering. I went to my Neuro and he agreed I was suffering from Vestibular migraines. I think the article and explanation posted above is very informative and see that you have addressed several other issues that are not covered in the article, which again you have explained very well.

      My concern with the article and similar views by Specialists I have seen is the "presumption" that "compensation" will / should occur, and if it doesn't then there is an "implied" stigma on the patient that they are "just not trying hard enough / are doing it wrong / or it's all in their head". I feel that there is an inherent flaw in the basis of the hypothesis around "compensation" when there is a "pre-determined expectation" that damage will be compensated for and that "normal (pre-injury)" functioning will return. This has not happened in my case and I know of others in the same situation.

      I would offer up a suggestion that the process could be more "realistically" described as follows:

      1. Normal functioning

      2. Vestibular damage

      3. Compensation - the autonomic processes and automatic movements and adjustments made by the body to maintain balance. This is where the brain automatically adjusts functions based on the new interpretation of sensory input, processes the information and makes adaptive physical and psychological adjustments. This is the NORMAL "compensation" process. e.g. the adaptive changes include: anxiety, panic, avoidance behavior, gait ataxia etc. This behavior is the brain signaling that there is something really wrong in the interpretation of the world and its ability to move around in it adequately. It perceives real danger because there is danger. It triggers the fight-or-flight-or-freeze response, hyperarousal, or the acute stress response.

      I do not propose that this "compensation" response is "desirable" or functional, I propose ONLY that it "is what it is" and it's the "autonomic" compensation process given the circumstances. In fact, I believe it leads to the next stage, which is where we identify how "appropriate" this compensation is to our ability to function effectively.

      (Note: for some people, perhaps many, this internal compensation process can return them to a functional capacity without the following stages.)

      4. Decompensation – this stage identifies "ineffective" , inappropriate, dysfunctional or functional deterioration or impairment that may include physical, emotional and cognitive components. Physical results can include chronic fatigue, visual disruption, muscular skeletal problems (e.g. overuse, over-balance, stress and strain injuries) and mentally an inability to process / interpret stimuli resulting psychological disorders including depression, panic and anxiety, adjustment / personality disorders. Cognitive impairment can result in confusion, memory loss and poor comprehension and communication skills.

      5. Recompensate or "Re-compensation" - this stage is where we have identified dysfunctional deficits and we actively engage strategies to re-learn, re-train, re-adjust, re-construct, re-habilitate, re-strict, re-press, so as to offset or counterbalance variations to try to re-produce equilibrium within the system. This is the stage of intervention where the use of VRT, CBT, medication, physical rehab, surgical intervention etc Results may include functional improvement, stability / sustainability, balance, equilibrium. If functional improvement is the result of active engagement in a specific intervention(s) where functional capacity results back to an acceptable level of healthy daily living activities, then I would describe that process as a "recompensation" - a newly learned "compensation" response as opposed to "compensation" - which I believe should be considered as the initial un-learned autonomic responses.

      6. Insufficient / incomplete compensation – (not failure to compensate which makes an inference that there is still an “ability”, when sometimes there is not). This stage is where functioning has improved from specific active intervention as in the previous stage and functioning has returned to a level that is deemed to be acceptable, tolerable, but not ideal.

      7. Disability - the condition of being unable to perform a task or function because of a physical or mental impairment. This is a stage where dysfunction (physical or mental) is completely disruptive, or a major disruption to the normal processes of daily living.

      Tom, I sincerely hope that you understand that I am not being disrespectful in my approach to this research. Having this disorder has given me a tremendous insight into this extremely complex disorder. I feel that terminology i.e. “failure to compensate” as well as the “expectation” that “compensation” is always an achievable outcome is really not helpful to those of us who continue to struggle with our symptoms. This pre-determined expectation that central compensation will occur is counter productive to psychological models where much emphasis for coping is heavily reliant on the need for “acceptance” when there is a permanent injury.

      I welcome your thoughts and those of others.
    1. TomBoismier's Avatar
      TomBoismier -
      I think that step # 3 does not describe compensation but maladapatation. Many patients fully compensate without formal rehabilitation. Those who maladapt often require rehabilitation.

      Keep in mind that there is not one universal "vestibular injury" experienced by all. Labyrinthitis, vestibular neuritis and trauma produce a single, one-time hit to the system. Meniere's, migraine and autoimmune disorders produce multiple smaller hits. The recovery process for a unilateral injury is far different than that for a bilateral injury. Other health issues can interfere with recovery.

      Compensation is not a conscious process. Failure to compensate implies no blame.
    1. Edward's Avatar
      Edward -
      My wife has a history of bilateral BPPV. Posterior canal occlusion was performed on the left ear in 2002. My understanding is that this left her with balance function only in the right ear. Eight weeks ago she woke up with severe vertigo and other symptoms of labyrinthitis and has been very ill since. An ENT consultant suspects that she has viral lab of the right ear. In relation to the excellent article on compensation, how does compensation etc apply in my wife's case?
    1. TomBoismier's Avatar
      TomBoismier -
      Posterior canal occlusion usually only affects one of the 5 balance sensory systems in the inner ear - the posterior semicircular canal. Unless the surgery went amiss, the horizontal and superior canals, and the 2 otolith organs should still be functional. Your wife should be examined by the neurotologist who did the surgery.
    1. Edward's Avatar
      Edward -
      Thank you, that is reassuring, will follow that up.
    1. Floatingthrulife's Avatar
      Floatingthrulife -
      So as a therapist myself, who has screened for vestibular issues and injuries for years..... I just had no idea what people were really dealing with. Now I am the patient, except I am finding it difficult to find practitioners and information that can really help me.( Right, I know..."join the club" so I did) Every brain has a different history. We are all brilliant at adaptation, some just more brilliant than others; depending on what we had to adapt to. Thus it is very helpful to see Tom's article and then your quite perseptive thoughts and insights.

      I am wondering if any of you brilliant adaptors can enlighten me on how to help and protect my brain from the cognitive disruption I am living with. I simply tell my friends and colleagues that I can not longer "walk and chew gum". This of course if very inconvenient for all of us since I was the "go to" person when things needed to get done. Additionally, now if I become overwhelmed (easily), have an attack in the grocery store, new place, etc., I simply start crying. I know it is coming, I am not scared, I know I am going to be really dizzy, I know I can bail myself out (eventually) however, that is now my only early warning detection system that my brain is not happy. I just cry. I don't get a vote.

      I have only found a few articles suggesting all is not well with the hippocampus in persons with vestibular injuries and nerve damage, which explains a lot, however, very little guidance on what to do to preserve and protect. Somehow, this issue seems to have gotten the thumbs up on the "it just takes time...." solution from most of the practitioners. Then, however you land in your recovery (of time), is what you get.....Really?

      So is it enough that I am doing my VOR exercises, for which I improved at record speed, but somehow that doesn't translate to the world I live in outside my house. Is this "in time" truly going to improve my cognitive issues, or is it just that will I have been gone for so long everyone including myself will have forgotten how competent I was? Does anyone have a road map?

      I now float and feel dissociated; and my need for three different vision prescriptions seems to further complicate the world I'm relearning.

      I am weeks/months into this and I still finding new ways to trigger myself and ruin my days, all in the name of desensitizing. Is there a do's and don'ts list somewhere? And of all the crazy things, being in the ocean on a deserted beach (with a baby sitter) has been the BEST therapy. I have decided it is a complex calm environment.

      I would appreciate any guidance as I am sure so many others would as well.

      Kind regards,

      Quote Originally Posted by pombonted View Post
      Hi Tom,

      I originally posted here with a question about "failure to compensate". You addressed my issue and suggested that migraines may be interfering. I went to my Neuro and he agreed I was suffering from Vestibular migraines. I think the article and explanation posted above is very informative and see that you have addressed several other issues that are not covered in the article, which again you have explained very well.

      My concern with the article and similar views by Specialists I have seen is the "presumption" that "compensation" will / should occur, and if it doesn't then there is an "implied" stigma on the patient that they are "just not trying hard enough / are doing it wrong / or it's all in their head". I feel that there is an inherent flaw in the basis of the hypothesis around "compensation" when there is a "pre-determined expectation" that damage will be compensated for and that "normal (pre-injury)" functioning will return. This has not happened in my case and I know of others in the same situation.

      I would offer up a suggestion that the process could be more "realistically" described as follows:

      1. Normal functioning

      2. Vestibular damage

      3. Compensation - the autonomic processes and automatic movements and adjustments made by the body to maintain balance. This is where the brain automatically adjusts functions based on the new interpretation of sensory input, processes the information and makes adaptive physical and psychological adjustments. This is the NORMAL "compensation" process. e.g. the adaptive changes include: anxiety, panic, avoidance behavior, gait ataxia etc. This behavior is the brain signaling that there is something really wrong in the interpretation of the world and its ability to move around in it adequately. It perceives real danger because there is danger. It triggers the fight-or-flight-or-freeze response, hyperarousal, or the acute stress response.

      I do not propose that this "compensation" response is "desirable" or functional, I propose ONLY that it "is what it is" and it's the "autonomic" compensation process given the circumstances. In fact, I believe it leads to the next stage, which is where we identify how "appropriate" this compensation is to our ability to function effectively.

      (Note: for some people, perhaps many, this internal compensation process can return them to a functional capacity without the following stages.)

      4. Decompensation – this stage identifies "ineffective" , inappropriate, dysfunctional or functional deterioration or impairment that may include physical, emotional and cognitive components. Physical results can include chronic fatigue, visual disruption, muscular skeletal problems (e.g. overuse, over-balance, stress and strain injuries) and mentally an inability to process / interpret stimuli resulting psychological disorders including depression, panic and anxiety, adjustment / personality disorders. Cognitive impairment can result in confusion, memory loss and poor comprehension and communication skills.

      5. Recompensate or "Re-compensation" - this stage is where we have identified dysfunctional deficits and we actively engage strategies to re-learn, re-train, re-adjust, re-construct, re-habilitate, re-strict, re-press, so as to offset or counterbalance variations to try to re-produce equilibrium within the system. This is the stage of intervention where the use of VRT, CBT, medication, physical rehab, surgical intervention etc Results may include functional improvement, stability / sustainability, balance, equilibrium. If functional improvement is the result of active engagement in a specific intervention(s) where functional capacity results back to an acceptable level of healthy daily living activities, then I would describe that process as a "recompensation" - a newly learned "compensation" response as opposed to "compensation" - which I believe should be considered as the initial un-learned autonomic responses.

      6. Insufficient / incomplete compensation – (not failure to compensate which makes an inference that there is still an “ability”, when sometimes there is not). This stage is where functioning has improved from specific active intervention as in the previous stage and functioning has returned to a level that is deemed to be acceptable, tolerable, but not ideal.

      7. Disability - the condition of being unable to perform a task or function because of a physical or mental impairment. This is a stage where dysfunction (physical or mental) is completely disruptive, or a major disruption to the normal processes of daily living.

      Tom, I sincerely hope that you understand that I am not being disrespectful in my approach to this research. Having this disorder has given me a tremendous insight into this extremely complex disorder. I feel that terminology i.e. “failure to compensate” as well as the “expectation” that “compensation” is always an achievable outcome is really not helpful to those of us who continue to struggle with our symptoms. This pre-determined expectation that central compensation will occur is counter productive to psychological models where much emphasis for coping is heavily reliant on the need for “acceptance” when there is a permanent injury.

      I welcome your thoughts and those of others.
    1. dizzytink's Avatar
      dizzytink -
      I think people do not realize the far-reaching aspects of having a vestibular disorder. The pathways of our fight and flight systems and vestibular pathways also intersect, hence all the crazy bursts of adrenalin. So pre-vestibular issues, if I were to go and stand on a cliff, I might have rapid heart beat or feel a twinge in my stomach. This might help me get the message to move away from something that would be a safety issue for me. I think we were designed that way to ensure our safety, however it works against us if we have inner ear damage, as walking into a library with rows of books might evoke the same sensation. I think when we are constantly freaked out by our environment, that is going to interfere with our ability to concentrate and other cognitive tasks. However, there are probably other reasons that are more subtle, the unconscious information one may pick up from one's environment with an intact vestibular system might help us process and interpret incoming sensory info more quickly. I find there is a tremendous loss of flexibility, both emotionally and cognitively. I have trouble going into new situations or even situations that I have known in the past, but haven't been in for a while. I can fall apart very easily with ramped up dizzies and just feel wired and anxious. In that way I can have some of the emotional lability of someone with brain damage, I suppose. It is not volitional but stems from a brain that is overloaded. How to get around it and adapt? I think it is vital to avoid very narrow spheres of existence. It's important to mix things up. Get out of the house, go to different places, try different activities, exercise, but build up slowly so you don't overwhelm the poor brain There is something called neuroplasticity, the ability of the brain to adapt to new circumstances, but it needs a variety of input. The other thing that the brain needs is a continuous baseline in order to recalibrate. Those of us who are not compensating have some form of fluctuating activity going on in our heads. Many of us probably have screwed up neurotransmitter activity as a result of this inner ear stuff. So we get migraine activity in the form of dizziness which prompts anxiety and depression and that interferes with the positive gains. Or the anxiety and depression can instigate the migraine and the neurotransmitter mess up. Some of us our genetically prone to be more sensitive to motion and hence migraines. Our heads may interpret simple activities as being as intense as driving on a curvy road, so again those who are more sensitive may react with migraine induced dizziness. Or we have medical issues that keep the dizzy fires burning. Or prior vestibular injuries, Or we have more anxious personalities from years of habit etc. Finally I think it is also a habit how much one relies on their visual sense for their position in space. Many individuals with migraine or anxiety disorder tend to be more visually dependent and certainly those with a vestibular disorder are. If one is able to break the over reliance on the visual, one also would have a better chance of feeling less dizzy, that is the theory of standing with eyes closed etc. in VRT. A lot of our symptoms of walking into a supermarket and feeling overwhelmed and dizzy is really because of over-reliance on the visual. I often wonder if it is harder for people with vestibular neuronitis to compensate than those with labyrinthitis, because the labyrinthitis is localized in the inner ear and not in the more sensitive brainstem. There is so much to learn about vestibular issues, but this is a great topic.
    1. Floatingthrulife's Avatar
      Floatingthrulife -
      Thank you,

      I am on the privileged side of the disparity in medical care. thus I had a working diagnosis in 3 days, saw a true specialist that did a full workup, got a CT on day 2 to rule out stroke, MRI a week later to rule out tumor along with other central issues and was in Balance/vestibular rehab with in two weeks with a confirmed diagnosis. First time I have used my medical insurance in 5 years... I blew through my deductible in a week. I went from crying in the PT waiting room and spinning from everything to outgrowing the exercises and being able to stand for 30 seconds and walk with my eyes closed in 2 1/2 weeks. Everyone thought I was going to have this, ahead of schedule, miraculous recovery. Including me. My brain clearly is sorting out other issues. Balance is so much better, however clearly visually dependent and freaked out. What I learn daily in my home environment and in rehab doesn't seem to translates to the outside world. Work environment changes daily because the, peolple, sun position, weather and tasks, demands change...

      I am a student of the brain and neurotransmitters, and seem to surprise myself daily when I can magically do stuff and then just as magically not. So I wonder if I have taught myself, by experience, that everything could suddenly be dangerous, and what was OK yesterday, is not OK today. I am trying to figure out the formula of exposure and re-learning/ accomodating coupled with giving my brain a break and recovery. Like a small child learning the world and developing their brain, I do best if I sleep 10 hours a night. Three hours of work is exhausting and everyone can see it on my face.

      It just seems like there should be somekind of inventory that patients/ people with vestibular issues can fill out to figure out what will help or hinder their recovery. Maybe there is and I just can't find it and it hasn't been given to me. I feel like I got a bunch of gold stars in Physics and then found out my final was in Chinese economics....

      I appreciate the feedback. I am figuring out this site slowly and will go back through as many old posts as possible related to all my questions. If I run across any articles or that for which I keep asking questions, I will post it or the link. I am humbled by this experience.

      Kind regards,
    1. pombonted's Avatar
      pombonted -
      Hi Floating,

      Welcome to the board. I've been MIA because I haven't been well lately, so have missed ur posts. I had a quick look and can't seem to find out what your diagnosis is???

      Would luv to discuss some of your opinions and am definitely keen to pursue answers. I wrote about compensation in the quote below earlier this year as I was completely frustrated at not getting any answers YET knowing the problems are real! I had quite a debate about it on another forum at the time. I can share that as well. I also have found out more since that time so I will update my thoughts on things as soon as I'm feeling a little better. As you've obviously noticed there are quite a great bunch of very intelligent and experienced people on here that are also a wealth of knowledge.

      I always like to keep my eye on the VEDA site. They are updating things all the time. A few mths back they ran a survey on what issues people wanted addressed so that they could allocate funding to the areas that were a priority. I also volunteered to assist with any research that they wished to conduct. The other site that has a lot of info is Dr Hains site http://www.dizziness-and-balance.com/ It's a bit of a mess of a site structurally but there is HEAPS of good info there if u take the time to look around.

      I'll post this under your other post and hope to talk soon.
    1. Floatingthrulife's Avatar
      Floatingthrulife -
      Thank youAfter a really difficult week. I actually feel improved, for now, for the last 4 hours. I was diagnosed with vestibular neuronitis, damage in the left lower vestibular nerve complicated by complicated nearly 50 something eyesight issues. I live in mid range and need trifocals, but can't accomdate to bifocals and was sick for two days trying progressive lenses (a year before this episode) I have actually been unknownly accomodating to a vestibular issue. Then the perfect storm. Who knew 8 weeks later I would be so compromised!! Clearly many, just not my specialists....... If only my precious brain worked better I would know how to have private conversations and navigate this site, can you email me? I am so mindful of not breaching any of the forum agreements I am very careful about what I say and post. I started my own Pilates based VRT with my clinic PT since the VRT clinic didn't translate to my real life. I was able to intuitively say what I needed to do based on how crappy it made me feel and realize how that was similar to the real life triggers that I face. My colleagues are so tuned in to who I was compared to how I am today, THEY get it. I am trying to be as scientific as possible to translate situation to functional rehab. I work with a brilliant neurologist that also does functional medicine, so hoping we can develop some practical plans, questionairres, intakes and guidlelines for the cognitive side from this. I will become e a resource, with out a doubt, I am keeping notes and translating for practitioners. if I can recover to teach again, my vestibular course is going to take a drastic turn. Already dreaming of ways I can create a dizzy experience and then demand cognitive function of participates. I am so deeply humbled by this condition and hoping my knowledge and intervention spares my brain of long term consequence; all of us recognize I may not get a vote. Hoping for the best, preparing for a new reality. Either way, I am a resource. Hope you feel betterWarm regards,
    1. pombonted's Avatar
      pombonted -
      Hi, it's early days for you and difficult times. I see you will be facing additional challenges with your pre-existing eyesight problems. I'm glad you're feeling better at the moment. I will send you my email and I am happy to discuss in depth any / all of your issues and thoughts on things.

      Don't be too worried about what you say on here as being new means you will have a moderator, and they will keep an eye on things. They have a soft approach and do explain to you what is and isn't acceptable. I'm only fairly new to forums and was a little intimidated by this one at first. I joined another smaller one and now feel that I have "graduated" to this one where there are far more members and a whole new wealth of information, support and resources. I'm not sure if anyone has mentioned but we do have a resident expert, Tom Boismier, who can and does help out with medical advice and resources. He's a good sport as well, as he will provide information and is prepared to discuss things openly. Some Specialists would find that too confronting. I have been struggling now for 7 years and trusting in the Specialists and getting nowhere. So I began investigating things for myself. I have learnt an incredible amount since the beginning of this year and now feel better able to seek out solutions to my problems. This is a huge board to navigate so feel free to ask questions, even if they have been asked and answered before, as something or someone new might bring an added element to the issue.

      Things are constantly changing and there is still so much that they don't know about vestibular disorders, so I am happy to assist with taking a proactive role in educating the medical community and the public of the issues that we face with this somewhat invisible disorder yet dramatically debilitating disorder. I'm sure you will find many others that will be keen to offer similar support and knowledge.

      Take care and if you're struggling with things just add "for now" to the end of your sentence. Sometimes, especially on bad days it's easy to sink into hopelessness and even on good days we sometimes lose the joy of it bc at a deeper level we know it won't last.......so adding a "for now" seems to help

      P.S. I am passionate about the topic of "compensation". What works and what doesn't. I have developed very serious muscular skeletal problems on top of the visual symptoms and the chronic vestibular dysfunction. So VOR, proprioception, and vestibular issues and treatment are hot topics with me.
    1. Pamela's Avatar
      Pamela -
      Tina, thank you for that post - I found it very interesting and illuminating and I've saved it on my laptop.

      On the subject of compensation, my daughter who's a medical student is shadowing an otolaryngologist and his team this week. She said he told a vestibular patient that walking on sand is excellent vestibular rehabilitation. He said they see an 80% improvement in patients who walk on the beach for 30 minutes, 4 times a week for 8 months.
    1. pombonted's Avatar
      pombonted -
      Great info Pam, I'm gonna give it another go. the weather is warming here so it will soon be doggy beach time. I always find the beach challenging, the reflections coming off the water, the unevenness of the sand, it's really exhausting but I'm up for a challenge. I do love the beach and with my furry monsters it's always a joy no matter how tiring. It also beats going face down into concrete if I have a fall P.S. Pls keep us posted on any other tips she picks up and also congrats on having such a smart girl, u must be very proud.