For employers & health insurances
For employers & health insurances
Balance disorders in the office?
A lack of knowledge leads to a lack of understanding among colleagues and sadly often results in unnecessary layoffs.
An additional burden for patients is that insurance companies are not familiar with this category of disorders.
10 myths busted
The socio-economic cost of vestibular disorders is high and needs to be improved. But it's not the patient's fault. Read misconception 4 to find out more about this!
4. "Colleague X can attend work, the other one is a mere Drama Queen."
That will be the conclusion you reach if you don't get proper information. Vestibular disorders present in various types and forms. And as a patient you don't choose which of these falls to you:
Acute vestibular disorders render you immobile suddenly, out of the blue.
- Neuritis Vestibularis (VN = caused by a virus of your vestibular nerve and labyrinth)
- Labyrinthitis (LAB = is a full-blown attack of your labyrinth and cochlea)
Episodic vestibular disorders are characterised by intense outbursts that virtually disable you in the moment, interspersed with stretches of normal functioning.
- Benign Paroxysmal Positional Vertigo (BPPV = everything to do with the inner ear crystals or otoliths)
- Ménière's Disease (MD = probably caused by endolymphatic hydrops in the inner ear)
- Vestibular Migraine (VM = migraine headaches' little brother)
- Vestibular Paroxysmia (VP = a neurovascular conflict caused by friction between the vestibular nerve and artery)
- Superior Semicircular Canal Dehiscence Syndrome (SSCD = a hole in the bony structure around the vestibular organ)
- Perilymphatic fistula (PF = a tear in the oval window between middle and inner ear that causes the perilymphatic fluid to leak)
- Mal de Debarquement (MdDS = sea legs that never turn back to normal)
- Autoimmune inner ear disease (AIED)
Chronic vestibular disorders continuously impact daily life
- Persistent Positional Perceptual Dizziness, (PPPD = or Triple PD, this includes Visually Induced Vertigo, provoked by visual triggers)
- Bilateral Vestibulopathy (BVP = total loss occasionally occurs for example with medication for life threatening illnesses)
- Presbyvestibulopathy (PVP = when the body ages and becomes more unsteady)
That leaves a whole array of conditions that can lead to dizziness, but are not primary 'balance disorders' as such:
- Concussion or Whiplash
- Poisoning due to toxic fumes
- Temporomandibular joint dysfunction (TMJ = a disorder of the muscles that move the jaw and the joint that connects the jaw to the skull)
- Polyneuropathy (which affects sensory and motor nerves)
- Multiple sclerosis (central nervous system disorder)
- Neurofibromatosis (benign tumors on nerve tissue - among these are vestibular schwannoma or acoustic neuroma = neurofibromatosis type 2)
- Ataxia (coordination disorder, usually due to illness of the cerebellum caused by another neurological or metabolic disorder)
- Fluctuating blood pressure
- Hypoglycemia (low blood sugar)
- Panic attacks
- A CVA/cerebral infarction
- A brain tumor ....
A dizzying piece of trivia
As patients we almost know more about all these syndromes than doctors who should be up to speed. Isn't that peculiar?
1. "Dizziness is all in your head. It's not visible? It doesn't 'hurt'.
Vestibular disorders are - indeed - all in the head. Literally: not in the imaginary sense. Often the cause is the vestibular organs in the ears, or the collaboration of eyes and ears, or a problem with intergration of all signals in the brain. All in your head, like you say, but in a serious way.
And you're right again: there is no precise or clear pain to speak of. Unless the vertigo, in certain conditions, is accompanied by headaches. Painless for most of the time, but your whole body feels sick all the more. It is severely debilitating at times. At first glance there is no obviously visible disability, yet it is one of the most crippling disorders there are. Do you have another bout of illness? Forget about getting up or walking.
How dóes it feel then? Do you know what a stomach bug feels like? People with a spell of vertigo experience all of it: the room is spinning - like you're in a washing machine or on a roller coaster - and you break out in sudden sweats and hyperventilate - which is a consequence and not the cause! There's violent vomiting, your complexion turns grey and dull and this intense dizziness is then followed by an onset of diarrhea. All of this while you cannot even tell the difference between up and down in that moment. Afterwards? You can feel nauseous for hours, even for days. And you risk starting it up again with the slightest movement of your head.
"A vestibular disorder is for the weak. It
will not happen in my robust team."
You could be surprised. Even though you've been in great health for years, this could happen to you, completely out of the blue. A simple virus that causes a banal cold at first, could suddenly induce an acute balance dysfunction.
- Take Neuritis Vestibularis. It peaks mostly in February and March and picks its victims at random from your previously sturdy team. In the case of neuritis vestibularis it concerns a viral infection - caused by the Herpes Simplex Virus type 1 (HSV-1) or another virus - of the vestibular nerve and consequently a partial or complete loss of one or both labyrinths. Prevalence is 7% of the patient population which makes it the third most frequent cause of a vestibular disorder. It renders the patient acutely immobile, bedridden for days. About 1/3 is partly or completely cured within a month, it takes a year for another 1/3 to heal, and the remaining 1/3 simply doesn't. After another 5 to 10 years about 20% will not respond to tests. That means that about 80% recovers partially or totally.
- In the case of Labyrinthitis it goes a step further. On top of the neuritis vestibularis story there is a loss of hearing or complete deafness. The cause? A bacterial or viral infection of the full inner ear (labyrinth and cochlea are affected). Usually symptoms pass after a few weeks.
- What if your secretary returns from a dream cruise and disembarks with seasickness (not being a disorder as such) but never gets her land legs back; in that case it becomes a proper disorder called Mal de Debarquement Syndrome, Even though the previous years she was healthy as a trout...
Our sense of balance already starts to deteriorate after 40. About 30 to 40% of all people will experience a mild to severe balance disorder before they turn 65. A fourth of them will have to consult multiple doctors before getting the right diagnosis and treatment and will be absent from the job for a while.
3. "It cannot possibly be that difficult to treat that vestibular disorder?
There doesn't exist 'a' vestibular disorder that responds well to treatment. Vestibular disorders are not one and the same. Up to today we know about 15 syndromes. It can take a long time before a correct diagnosis is made and the right treatment has started. Precisely because so little is known yet. Continue on to get the idea:
Did you ever have sea legs or experience seasickness? Imagine that this feeling never leaves. This is what MdDS or Mal de Debarquement is like. Being on a boat for just half an hour or flying can turn you from a healthy into a disabled person from one day to another. Curiously, these patients feel better only when they are in movement, like in the car. Seated on a chair, the ongoing dizziness drives them insane.
Did you ever zigzag or wobble around when you were roaring drunk as a student? Visualise this as daily reality, without drinking a drop of alcohol. Bumbling and stumbling into everything and having people whisper about you as if you were an alcoholic. People with damaged organs of balance or Bilateral Vestibulopathy experience this. This can happen to healthy people after a course of life-saving antibiotics, harmful to our previously well-functioning organ of balance.
Would you think it bizarre to hear your eyeballs move in your head? And have every noise of the body amplified ten times, making you dizzy and nauseous? That is what people with SSCD of Superior Semicircular Canal Dehiscence syndrome endure, where they have a little hole in the bony structure that surrounds the organ of balance. It renders them sick and dizzy to the point of being bedridden for days. You could get it after a fall as well. This illness is barely known. Therefore these patients are often classified as psychiatric subjects and forego the opportunity of the surgery that would cure this.
Do you know the feeling of riding a rollercoaster? Imagine the feeling of an involuntary, never ending tumbling over, but not for your entertainment. This is vertigo. Vertigo is an intense dizziness that makes the room spin endlessly, like you are in a washing machine. This is the case with Benign Paroxysmal Positional Vertigo (BPPV), for example. Benign is what doctors might call it. But it is highly debilitating.The crystals of the inner ear are moving to where they shouldn't move, which results in a conflict with the messages from the eyes to the brain; you have the illusion of movement, while sitting still. BPPV is treatable with an Epley maneuver. Or when very persistent, with a canal plugging of the affected ear.
A similar sensation happens in case of Vestibular Paroxysmia. But the cause is completely different. It refers to a neurovascular conflict. Artery is causing pressure to the vestibular nerve, bringing about a spell of vertigo. Without realising it, a lot of people are predisposed to this phenomenon. They are living their life symptom-free for many years. It can be triggered by anaesthesia (the administered drug expands the artery) or just by taking Bella Donna, a product that appears innocent.
BPPV and VP? There is hardly a doctor who can distinguish between them! A lot of people improve with an anti-epileptic, and can discontinue the medication altogether afterwards. An Epley maneuvre to treat VP however? Oh my, this will cause more harm!
Ménière's disease is the most familiar diagnosis, but actually the least common. A lot of people go around for years with this misdiagnosis, because doctors often know only of this syndrome, and for this disorder there are self help groups but not for the others - and that is how the myth persists that everybody suffers from Ménière's disease - and therefore many patients get diagnosed with MD. Typical is the concurrence with tinnitus (and drop attacks) and hearing loss. If your ability to hear remains unchanged, you should start asking yourself whether the diagnosis you've had for years, with an intact hearing, is correct... An expert physician will prescribe Betaserc (and a doctor lacking expertise in this field will prescribe the same for any other disorder, though Betaserc will not improve these).
A rather recently discovered illness is Vestibular Migraine. People with a history of Migraine can develop this.
This is not even an extensive list. We have to admit that physicians are not aware of (all of) these. Regularly they send you on your way having concluded your blood pressure, hyperventilation, or panick atttacks are the culprits. In reality these three causes are rarest of all.
To complicate things even more: whereas for one type of illness physiotherapy is a suitable treatment, another type of illness can require medication - and another still calls for surgery.
Today, many people are still receiving incorrect treatment, which unwillingly renders them disabled. House4balance needs this to change!
5. "It's best to discharge employees who suffer from a vestibular disorder."
That is a little reductive. There are people who are more than able to function on the job, but experience an upsurge of symptoms from time to time. Empathise and evaluate how these moments can be addressed in such a case. Because people in this situation are usually very motivated to participate in the labor force. A job gives purpose to one's life, and often it's just down to making a few adjustments for this employee. Sometimes the problem is solved by relocating people who are sensitive to visual and auditory stimuli for example, from a landscape office space, to a more private area. Making concessions for working from home now and again as well as making clear arrangements around expected output are other ways to resolve things. Perhaps it is helpful to reduce a 4/5 contract to a 3/5? Or an adjusted computer screen, a suitable job profile that allows the employee to avoid driving, a teambuilding moment that takes their situation into account ... discuss the options!
Give your employees a chance. And don't come to hasty conclusions.
6. "You have to push back against the symptoms and exercise more to speed up the healing process."
Training is a real thing. Ballerina's, circus performers, pilots, astronauts, whirling Derwishes, ball sport players ... all of these people have an advantage. Their vestibular organs and brain are so well trained that they are in a slightly favorable position if they ever were to catch a virus. Ball training is put forward as a treatment for some balance disorders. That is due to a mechanism called neuroplasticity: the capacity of the brain to adapt to new situations. If part of the system malfunctions or fails, another part will take over. We observe changes in the brain too. Therefore you can train yourself in order to initiate the compensation process.
If only it was that easy; where this is good advise for one balance disorder, for the other the only option is resting.
7. "If you were or have ever been afflicted with a vestibular disorder before joining insurance company X, you are not covered if you need to go to hospital in case of a sudden bout of illness."
Oh yeah? Wrong. There are so many disorders that are completely separate from one another. You can be cured from one condition and get another one three years down the road. Any day, you could even receive a second diagnosis on top of the first one. We urge insurance companies to not react hastily and arrive at incorrect conclusions coming from misinformation. We are urging the patients to arm themselves against these types of decisions and get well-informed.
8. "Dizzy tourists can receive treatment locally; they don't have the right to repatriation."
This too is a misjudgement based on a lack of knowledge. Go over all the info above, and come to the conlusion with us that it's best to repatriate the patient in order for him to - that's what travel insurance is for - benefit from the best care from experts in his or her home country.
9. "As an insurance company we base our judgement on existing protocols & online information."
Wrong. Sadly there exist - world wide - no correct protocols for doctors who are in contact with dizzy patients: general practitioners, A&E doctors, ENT consultants, neurologists, ophtalmologists, pediatrists, geriatricians, physiotherapists... or for insurance companies.
- Domus Medica & EBM Practicenet in Belgium fall seriously short by only showing desperately dated information that is years old, while science has evolved since; no mention of the most recent scientific criteria for Ménière's Disease (2015), Vestibular Migraine (2012), Vestibular Paroxysmia (2015), Benign Paroxysmal Positional Vertigo (2015), Persistent Postural Perceptual Dizziness (2017). Bilateral Vestibulopathy (2017) and Hemodynamic Orthostatic Dizziness/Vertigo (2019). No mention of SoStoned, the recommended method for differential diagnosis.
- Belgian doctors are looking at Dutch NHG recommendations, but those too are lacking.
- Insurance company websites are sharing incomplete and incorrect information on vestibular disorders.
- Self help groups are focusing on the least prevalent syndrome - but most often erroneously presented as diagnosis - 'Ménière's Disease'. All other disorders don't even avail of a self help group, which reinforces the false information and prolongs the time for patients to transition to the right treatment.
Due to the lack of an up-to-date and overarching protocol, doctors in training are being taught remarkably dated knowledge. With substantial consequences. Misdiagnoses in Emergency Department range between 74 and 81%...
House4balance wants to put an end to this too. With a multidisciplinary focus group BWVD - Belgian Workgroup on Vestibular Disorders - we will work out an overarching protocol through CEBAM to facilitate the differential diagnosis between all existing syndromes from now on. For now we advise to rely on the scientific chapters in "Dizzy Me. Light on balance" for correct information, or on the opinion of a vestibulologist.
10. "Vestibular disorders are part of the ear-nose-throat domain of expertise"
If things were that simple... Indeed, today the expertise is found in the domain of ear-nose-throat (ENT). But a lot of the ENT medical consultants are specialised in ear, or nose, or throat, and mostly in surgery, not in our vestibular system. The vestibular organ is the 'orphan child of ENT'. Not every ENT doctor necessarily knows how to handle it. Which is too bad for the patient. From our viewpoint, balance is a well tuned interaction between the vestibular system, vision, proprioception and a correct integration of all sensory input by the brain (a.o. the cerebellum). Therefore balance should not only belong to the domain of ENT, but it requires instead a multidisciplinary approach, in collaboration with neurology, ophtalmology, audiology and physiotherapy, as well as support from the vestibulologist - and actually geriatrics too in case of the elderly or pediatrics in case of children. Only then will patients get the care they deserve. And the general practitioner as first line aid? He or she should be able to have access to an overarching protocol (see also misconception 9).
There is an urgent need for a multidisciplinary approach of the vestibular patient.
Never again declare...
"Dizziness is all in your head. It's not visible? It doesn't hurt."
"A vestibular disorder is for the weak. It will not happen in my robust team."
"As an insurance company our judgement is based on existing protocols and online information."
"Vestibular disorders are part of the ear-nose-throat domain of expertise."
"It's best to discharge employees who suffer from a vestibular disorder."
"It cannot possibly be that difficult to treat that vestibular disorder?"
"You have to push back against the symptoms and exercise more to speed up the healing process."
"Colleague X can attend work, the other one is a mere Drama Queen."
"If you were or have ever been afflicted with a vestibular disorder before joining insurance company X, you are not covered if you need to go to hospital in case of a sudden bout of illness."
"Dizzy tourists can receive treatment locally; they don't have the right to repatriation."
Show you care.