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Coping with dizziness and vertigo

Dizziness can be a disconcerting and often debilitating sensation, especially when it strikes unexpectedly. Coping with dizziness and vertigo can be done through a variety of ways including lifestyle changes, medications, medical and holistic interventions.

While medical interventions and treatments play a crucial role in managing dizziness, incorporating lifestyle modifications can also be incredibly beneficial. By making simple yet effective changes to our daily routines and habits, we can better cope with and reduce the frequency of dizzy spells.

Understanding dizziness

Before discussing methods for coping with dizziness and vertigo, we’ll do a brief overview of dizziness and vestibular conditions. If you’d like to learn more, this blog post goes into more detail. Vestibular conditions can result in symptoms of dizziness and vertigo as well as: light headedness, bouncing vision, rocking, swaying, brain fog. Secondary symptoms can also include anxiety, fear, depression, fear to leave the home. More on symptoms, anatomy and triggers for symptoms here.

Vestibular conditions result in inaccurate, incorrect, or delayed relaying of information to the brain. The brain takes in information from the vestibular system, visual system and proprioceptive system to determine where the body is in space, and any corrections needed in order to stay safe. If there is a mismatch in signaling, the error signal produces unwanted symptoms. Since we are dealing with spatial orientation and movement, many find quick movements, repetitive movements, or general balance to be challenging and aggravating.

It’s normal to having additional testing to rule out other causes such as medication toxicity, stroke, MS, cardiac involvement, POTS etc. There are tests to help determine vestibular involvement through ENT/audiology or with a physical therapist. More on this here and here.

Identifying the underlying cause of your dizziness is crucial for effective management.

Coping with dizziness and vertigo

Back to the Basics: these areas are probably something we’ve all been told to help support healthy habits and support the body. Many are low cost or free and tend to be overlooked at the impact they can have.

1. Hydration. Up to 75% of Americans are chronically dehydrated(1). Limiting caffeine and alcohol, and talking to your doctor about electrolytes to assist with improving hydration can be helpful for dizziness.
2. Diet. Aim for a balanced diet with fresh fruits, vegetables, grains, fats and protein. Reducing processed foods and inflammatory foods can help with gut health which can be beneficial overall and help with dizziness.
3. Sleep. Consistent, good quality sleep is so important. A bad night sleep can make the healthiest person feel subpar. Getting enough sleep and regular sleep becomes even more important with vestibular conditions.
4. Stress/Mindset. Working on mindfulness to help with stress and outlook has been a game changer for many with dizziness in getting back to their favorite activities or getting over a plateau. There’s a lot of resources and different ways to practice mindset, many are compiled for you and regularly updated in Vestibular Group Fit.
5. Movement. There are many benefits to exercise for health, stress management, improved sleep, but can also help with dizziness. Exercise can help reduce migraine attacks and can also help work on functional strength and movements to return to activities. Starting gradual and slow is important, and is recommended to talk to your doctor and physical therapist for further guidance to get started.

Research has shown that the top 3 stressors for those with migraine attacks are sleep, stress and fatigue (2). When thinking of vestibular migraine or vestibular conditions in general, these are huge in long term management for not just dizziness, but overall well being.

Additional considerations for coping with dizziness and vertigo

Modifications. The goal is to return to daily activities, work and hobbies to ones fullest potential. In the meantime, making modifications is helpful not only in progressing towards goals, but participating in activities with reduced symptoms. This might include breaking down tasks throughout the day, prioritizing the main tasks, taking breaks. Other options include blue light glasses such as avulux to help with screens and overhead lights. If traveling a lot or experiencing altitude changes using earplanes, or tracking weather changes with weather X app.
Supplements. Depending on the vestibular condition, certain supplements have been backed by research to help improve symptoms.
Support. It takes a village. Having close friends be able to help during symptom flares. A medical team to assist with treatment, tests, and ongoing management. Mental health therapists to help with coping strategies for stress or anxiety. Finding others that understand your challenges due to having vestibular conditions themselves. Having a trusted circle is so important to celebrate the wins, and support during the set backs.
Medical intervention. This may include medications to help prevent or abort an attack from starting. This may also include vestibular rehab to work on return to movements and daily activities. Headache specialists are helpful in mangement and diagnosing of vestibular migraine. Check out this provider look up tool here. If there isn’t one close by or you have a provider you trust and is open to a collaborative team approach, consider neurahealth for telehealth appointments with headache specialists that are well versed in vestibular conditions. Click here to learn more and use VERTIGODOCTOR15 for a discount!

Remember, small changes can yield significant results, empowering you to live life to the fullest despite the challenges of dizziness.

Disclaimer

Want to learn more about management strategies and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

Disclaimer:

Remember: this post is for informational purposes only and may not be the best fit for you and your personal situation. It shall not be construed as medical advice. The information and education provided here is not intended or implied to supplement or replace professional medical treatment, advice, and/or diagnosis. Always check with your own physician or medical professional before trying or implementing any information read here.

Resources

Taylor K, Jones EB. Adult Dehydration. 2022 Oct 3. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan–. PMID: 32310416.
Park JW, Chu MK, Kim JM, Park SG, Cho SJ. Analysis of Trigger Factors in Episodic Migraineurs Using a Smartphone Headache Diary Applications. PLoS One. 2016 Feb 22;11(2):e0149577. doi: 10.1371/journal.pone.0149577. PMID: 26901341; PMCID: PMC4764678.

Diagnostic testing for vestibular disorders-explained

Entering the realm of diagnostic testing for vestibular disorders can be overwhelming, to say the least. But fear not; this guide aims to shed some light on the process, helping you navigate through the labyrinth of medical terminology and procedures.

When first going to a doctor for dizziness, it’s normal for tests to be ordered to gather more information as to what might be going on. Below are common diagnostic testing for vestibular disorders to assist providers in gathering more information on the function of each vestibular organ. These are commonly performed by an audiologist. Other tests performed by a physical therapist are in detail here.

Taking into account each individuals story is so important. Your provider will listen to your experience, consider other medical history factors to assist in further referrals. Typically an MRI or CT scan will be ordered to rule out other causes. In most cases, this type of imaging will come out normal in those with vestibular conditions. MRI and CT scans are not great at finding vestibular related conditions. MRI and CT are good at ruling out other causes (stroke, tumor, MS etc).

CT scan is useful with identifying Superior canal dehiscence or thinning of the temporal bone. Symptoms such as “hearing your eyeballs move” or dizziness with sneezing or coughing are common symptoms that prompt this type of imaging. In most other cases however, MRI and CT scan are just the beginning of tests. Below includes testing to determine the status and function of the vestibular system.

Quick vestibular system background

Let’s quick talk about what it is that we’re testing–the vestibular system. The vestibular system, nestled within the inner ear, plays a pivotal role in maintaining balance and spatial orientation. When this delicate system becomes disrupted, whether due to injury, infection, or other underlying conditions, it can wreak havoc on your equilibrium, leading to a myriad of symptoms such as dizziness, vertigo, nausea, difficulty concentrating, unsteadiness, neck pain and more. Diagnostic testing for vestibular disorders looks at directly testing the nerve the shares information between the vestibular system and brain to determine possible diagnoses.

Diagnostic testing for vestibular disorders

Listed below are common tests used to gather more information. This information can assist with other physical assessments and personal report to help with diagnosis and moving forward with a treatment plan.

Electronystagmography (ENG): This test tracks your eye movements in response to various stimuli, helping to identify abnormalities in the vestibular system.
Videonystagmography (VNG): Similar to ENG but utilizing infrared video technology for more precise measurements of eye movements. This includes tracking objects, looking between targets and other eye movements. Positional testing to assess any dizziness when in different head and body positions are performed with eye movement recorded and measured. This can help identifying any signs that don’t indicate a vestibular/peripheral cause, and other conditions such as BPPV.
Caloric Testing: By stimulating each ear with warm and cool air or water, this test assesses the superior branch of the vestibular nerve. Movement sensations are a very normal sensation to have here. It is not an attack. The temperature differences is stimulating only one side of the vestibular system on purpose. This produces involuntary eye movements (nystagmus). By comparing one side to the other. This test looks for symmetry of each vestibular signal and can help identify asymmetries.
Rotary Chair Testing: You’ll be comfortably seated in a rotating chair while your eye movements are monitored, providing valuable information about your vestibular function.
Vestibular Evoked Myogenic Potentials (VEMP): This test evaluates the inferior branch of the vestibular nerve which helps with the otolith and saccule function. This involves electrodes on the head/neck with some head movements and sounds. This can help in diagnosing: vestibular neuritis, Meniere’s disease, superior semicircular canal dehiscence.
ECOG (electrocochleography Exam): This looks for increased fluid pressure in the inner ear. This can be indicative of Meniere’s disease. This test is not used in isolation to diagnose Meniere’s disease as this test isn’t as accurate if being done in between attacks. This involves some electrodes and a few sounds played. A relatively quick and easy test!
Audiogram: A basic hearing test can help determine any hearing loss and what type. Meniere’s disease can cause low frequency hearing loss on the affected side. Labyrinthitis will also cause hearing loss.
Auditory Brainstem Response (ABR): Similar set up to an ECOG this test helps measure for any hearing loss. Typically this is done in those that are unable to perform an audiogram.

Other considerations

Other considerations include vision exams to determine a need for vision therapy, or blood work to determine thyroid function, any deficiencies, or inflammatory markers in bloodwork that may be contributing to symptoms. These areas might not be explored initially, but are good to keep in mind as more information is gathered.

There are also additional tests that can help indicate vestibular involvement performed by a physical therapist. More on that in the blog post here. For more info on what to expect during testing, check out this post here

To learn more

Want to learn more about testing, diagnoses, and listen to an interview with a vestibular audiologist? Learn about other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

Disclaimer:

Tests for a vestibular diagnosis

Imagine seeking answers for persistent dizziness, only to find yourself shuttled between neurologists for MRI or CT scans, ENT specialists for auditory and balance testing, and even cardiology to rule out heart-related issues—all to no avail. You’re left bewildered, feeling anything but normal, despite test results consistently coming back within normal ranges. This frustrating journey is all too familiar for many individuals grappling with vestibular disorders. However, the key lies not in the conventional diagnostic avenues, but rather in understanding the intricacies of vestibular diagnosis.

Vestibular system background

The vestibular system, alongside proprioception and vision, plays a crucial role in maintaining balance and spatial orientation. Situated within the inner ear, the vestibular apparatus comprises semicircular canals and otolith organs, which detect rotational and linear movements, respectively. When this system malfunctions, individuals often experience a myriad of symptoms, including vertigo, dizziness, imbalance, nausea, and visual disturbances. These symptoms can significantly impair daily life, affecting mobility, productivity, and overall well-being.

Vestibular information is used in two ways. One is for balance, and the other is to keep our eyes focused and steady on a target, even while moving. For this to happen, information needs to be sent from the vestibular system to the brain. Certain systems and reflexes are designed to take this information and perform the necessary movements of the head, neck, trunk and eyes to do this seamlessly.

There is also an additional pathway that connects the vestibular system to the autonomic nervous system called the vestibulo-auntomic pathway. Knowing the different pathways the vestibular system is used in can help explain a lot about symptoms. Unsteadiness, bouncing vision, anxiousness etc. This also helps explain tests performed to help determine a vestibular diagnosis.

Testing to determine vestibular involvement

To unravel the mysteries of vestibular disorders, a range of specialized tests and examinations are utilized. The tests below are something that can be expected during a clinical examination at a physiotherapist or physical therapists office. If interested in learning more about specific diagnoses, check out the list of more detailed posts here.

Nystagmus, characterized by involuntary eye movements, can provide valuable insights into vestibular function. The vestibular system helps in keeping vision stable, so involuntary eyes movements that act a certain way can give insight into what signals are being sent by the vestibular system and vestibular nerves.

Positional testing, particularly for benign paroxysmal positional vertigo (BPPV), involves maneuvering the head to provoke characteristic symptoms and identify the affected canal. Involuntary eye movement (nystagmus) is helpful in combination with positional testing to determine the involved side (left or right) and canal to perform the proper corrective maneuvers.

Dynamic Visual Acuity (DVA) testing assesses the ability to maintain clear vision during head movements, offering further clues to vestibular dysfunction. If there is inaccurate signaling or information, this test will yield abnormal results. Retesting can help determine progress being made.

Standing balance assessments, such as Computerized Dynamic Posturography (CDP) or modified Clinical Test of Sensory Integration of Balance (mCSTIB), evaluate postural stability under various conditions while manipulating the different sensory inputs used for balance. This gives insight into what conditions are challenging, and what sensory systems are involved.

Functional balance assessments like the Functional Gait Assessment (FGA) gauge the individual’s ability to perform everyday tasks requiring dynamic balance control. This ties the functional movement aspect that is so impactful with vestibular conditions. To include movements such as turns, stepping over objects, narrow walking, walking eyes closed, or walking with head turns helps determine troublesome movements for each individual. These types of test can also help build a rehab program and act as a retest to track progress.

Testing from other providers

Videonystagmography (VNG) and Vestibular Evoked Myogenic Potentials (VEMP), we delve deep into the function of the vestibular nerve branches, shedding light on the superior and inferior pathways. By assessing the integrity of these neural pathways, we gain invaluable insights into vestibular function. However, it’s essential to acknowledge the limitations—while VNG and VEMP offer vital information, they can’t capture every nuance of vestibular nerve activity. Consequently, normal test results don’t always rule out vestibular involvement, especially in conditions like vestibular migraine. This type of testing does include a hearing test, which can help determine conditions such as Meniere’s Disease. More on this type of testing here and here.

MRI: this can rule out central causes of dizziness such as MS, stroke, Parkinsons, cerebellar disorders, acoustic neuroma. This cannot diagnose a concussion or vestibular migraine, which can be a vestibular condition resulting in dizziness, but a normal test result. This type of test is important to rule out other possible causes, but can feel discouraging as a normal test result when you’re not feeling normal.

Cardiology workup, tilt table testing. This is an area that can result in dizziness with conditions such as atrial fibrillation. Screening for other areas such as orthostatic hypotension, or Postural Orthostatic Tachycardia Syndrome (POTS) should be considered with a cardiologist (sometimes this is neurology as well) to diagnose and assist with management.

In conclusion

Navigating the labyrinth of vestibular diagnosis demands a holistic approach, recognizing the unique challenges posed by vestibular disorders. While conventional testing may yield normal results, it is imperative to delve deeper into the vestibular system to uncover underlying dysfunction. By harnessing specialized tests and examinations tailored to assess vestibular function, individuals can finally find clarity amidst the dizzying array of symptoms. So, if you find yourself trapped in the cycle of unexplained dizziness, remember—it’s not just about normal test results; it’s about deciphering the vestibular puzzle to reclaim your equilibrium and quality of life.

Want to learn more about testing, diagnoses, and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

Disclaimer:

Renga V. Clinical Evaluation of Patients with Vestibular Dysfunction. Neurol Res Int. 2019 Feb 3;2019:3931548. doi: 10.1155/2019/3931548. PMID: 30863640; PMCID: PMC6377969.

How to treat long Covid dizziness in 4 steps

Research on COVID 19 has shown a variety of symptoms, with one study showing 19% of people report dizziness or vertigo as a symptom. This blog post discusses long covid dizziness and 4 steps to get your dizziness addressed. (1) Learn the latest research on long covid dizziness and steps to take to address covid related dizziness including common providers and treatments.

Research last updated August 2023 for this article. Ongoing research is occurring in this area so information discussed may be out of date depending on the time you read this article.

What is considered long Covid

The acute phase of covid is when symptoms first appear, and testing shows a positive result until your body has cleared the active virus. The acute phase by the CDC has recommendations ranging 5-10 days during this acute phase based on different scenarios you can find here.

Long covid is defined as symptoms that are present 4 weeks after the acute phase is over (2). About 10% of people with covid get long covid. There appears to be a link with increasing likelihood of long covid with each reinfection.

Dizziness and Covid

During infeciton, our body releases cytokines as part of the normal immune response. A cytokine storm is when the body release too many cytokines into the blood too quickly. This can be a result of infection, autoimmune condition or other disease. This can occur during covid 19 infection and is believed to be a contributor to long covid symptoms.

Meniere’s disease, vascular vertigo and BPPV have also been linked to elevated cytokines.

Covid related dizziness can appear in a variety of ways. Typical testing used by audiology for assessing for vestibular disorders shows abnormal findings in those with dizziness after covid (3). A variety of findings came from this study on testing, talking to your doctor about comprehensive testing with audiology or ENT could be a helpful step in determining best course of action.

How Covid or long Covid dizziness occurs

During infection, there are a few ways that the body can be involved that result in dizziness. Some are:

It can trigger VM
It can cut off blood flow to inner ear, presenting like a vestibular neuritis
Trigger BPPV
Disrupt neural pathways involved in balance
Attack Schwann cells on vestibular nerve
Attack hair cells in vestibular system

Long Covid dizziness and migraine

Other considerations with covid related dizziness is how this impacts others based on a variety of factors. For example, those with a prior history of migraine report intensified symptoms of their migraine attacks. If no previous history of migraine, the onset of headache or migraine disorder may become known. This is thought of a genetic link to a person with a higher susceptibility to migraine or dormant and infection activated the headache or migraine disorder.

Treatment: Treat like a migraine disorder. Get a headache specialist and/or neurologist involved. Work on breaking the cycle of migraine attacks and then focus on prevention and management.

Long Covid dizziness: Hypofunction

If your presentation after covid is like a neuritis or hypofunction, the same treatment principles apply. It appears that compensation for this can take longer than a traditional hypofunction/neuritis. Keep this in mind as you’re working on VRT, exercise, mindset etc. Progress can be made and good recovery, but it may take longer and that’s normal.

Treatment: Vestibular Rehab Therapy. ENT or PT are common providers to identify and manage this condition

Long COVID dizziness and POTs

POTs stands for Postural Orthostatic Tachycardia Syndrome. POTS symptoms can vary widely with more information from Cleveland clinic here.

79% of those with long covid meet criteria for Treatment regime generally consists of: graded exercise (recumbent/supine) , fluids and electrolytes, compression garments, smalls meals throughout the day, certain medications. Cardiology is an important provider role to have on your team for identifying and managing POTS.

Other treatment considerations for long Covid dizziness

Determine what covid caused for you. (hypofunction, migraine, PPPD, BPPV etc.)
Treat condition if there is one
Manage the dizziness (Remember Vestibular Group Fit principles here: Movement, Mindset, Education, Medical support)
Get moving! Not sure where to start? Consider being a vestibular group fit member for guidance, support and access for scaling movement content.

This is treatable and manageable. Getting the right providers to help manage and monitor your care with you is important!

Common medical providers for dizziness

Typical providers that are involved in this type of care are:

post covid care centers
internal medicine physician
neurology
ENT
Cardiology (POTS)

Disclaimer

Want to learn more about long covid dizziness and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

Disclaimer:

Sources

1. Caronna E, Ballve A, Llaurado, et al. Headache: A striking prodromal and persistent symptoms, predictive of COVID 19 clinical evolution. Cephalalgia. 2020; 40(13):1410-1421. doi: 10.1177/0333102410965157
Tana, C, Bentivegna, E., Cho, SJ. et al. Long COVID headache. J Headache Pain 23, 93 (2022). https://doi.org/10.1186/s10196-022-01450-8
Pazdro-Zastaweny K, Dorobisz K, Misiak P, Kruk-Krzemien A, Zatonski T. Vestibular disorders in patients after COVID 19 infection. Front Neurol. 2022 Sep 20;13:956515. doi:10.3389/fneur.2022.956515. PMID: 36203969; PMCID: PMC9531925

Meet marina, founder of parent with migraine

Learn how to approach parenting with chronic illness to tackle high symptom days, address parenting guilt and find acceptance with founder of Parenting with Migraine, Marina Medved-Lentini. Through her own personal experience she has created a platform to offer support, resources and guidance for other parents facing similar challenges.

Website is: here or you can copy and paste into your browser: https://parentingwithmigraine.com/

Instagram: @parentingwithmigraine here.

Marina has been living with migraine disease throughout her life. Her migraine attacks were episodic during her teenage years and through college and law school. After becoming a parent, Marina began to experience chronic migraine. Finding migraine support groups on social media helped Marina find hope, support, and information to work with her medical team to get her migraine managed. Her experience has motivated her to share her knowledge with others and become a migraine advocate. In vestibular group fit, Marina and Dr. Madison talk about screen time, parent guild, ways to prep and adapt when parenting with chronic illness.

Parenting with Chronic Illness Tip: Parent Guilt

Parent guilt can come in feelings of inadequacy, guilt of missing out on precious moments, or not feeling present or providing enough for your family. We tend to be our own biggest critic, and it’s important to look at these thoughts and feelings to determine what might be stemming from self doubt or own inner critic.

Having a chronic illness doesn’t define you. Parenting with chronic illness doesn’t define your value as a parent. You are strong and your provide your own set of strength and perspective as a result of your lived experience, chronic illness included.

Tips to help combat parent guilt:

don’t compare yourself to others. social media can create unrealistic expectations. If your kids are happy and have what they need, that’s what matters! Marina shares her realization that kids want to feel included in your life and this can be done with simple connections like watching a movie together. It doesn’t have to be an elaborate social media activity.
be kind to yourself. What would you say if this was your best friend having thoughts of self doubt? Is that what you’re telling yourself, or is your harsh inner critic talking?
Doing your best is what counts. It’s okay to ask for help. If friends or family have shown interest in helping, take them up on it. A little help can go a long way.
Get support! finding a community of those who share similar experiences and struggles can create a space to share openly your thoughts and feelings. You’re not alone in this.

Sometimes parent guilt comes in the form of potentially passing on a chronic illness such as migraine to your child. Migraine disease does have a hereditary component. Knowing about the signs and symptoms of your chronic illness in children can help identify the need for intervention quickly. Remember, there is so much more to a child than a chronic illness. Kids are resilient and have repeatedly reminded me that there’s something to be excited about and get the most out of life.

In the case of pediatric migraine, Marina shares resources on learning signs and symptom of migraine in kids to help get them proper resources. Migraine at school is a great resources for parents, educators and how to help support students. check them out here!

Parenting with chronic illness tip: preparedness and adaptability

Part of parenting is having to be flexible and adapt to changing situations. This is even more true when parenting with chronic illness. Having some items prepared can help on days when you’re not feeling your best. check out some tips below.

Talk to your children about your chronic illness. It doesn’t have to be super in depth, but at a level they can understand. Answer any questions they have. Being honest with your kids can help them understand more of what’s going on if you’re not feeling well, instead of potentially catastrophizing the situation into a worse case scenario in their minds.
As kids get older, they may benefit from having a role to help support you. This might be grabbing an ice pack or a migraine kit for you. Maybe it’s brainstorming a list of activities they can engage in more individually or next to you that are better tolerated when you’re not feeling your best.

Parenting with Chronic Illness: 3 Tips and Tricks — Parenting with chronic illness means having a plan for higher symptom days. Here are some ways to get kids prepped before a flare, and some ways to have snacks and food ready.

Parenting with chronic illness tip: acceptance

Finding acceptance and self compassion has been noted by many as a main part of living with a chronic illness. Acceptance doesn’t mean you’re giving up but learning to live with a chronic illness. This includes finding ways for best management while coming up with solutions to keep doing your everyday. Your plan for you day might change or look completely different than you expected and that’s okay! Acceptance helps us address the stress and change of the unknown. We cover this more in our self compassion blog and premium content in vestibular group fit and more on acceptance in this blog post.

Disclaimer

Want to learn more about how to parenting with chronic illness, household tasks and social situations and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

Disclaimer:

Bilateral vestibular dysfunction

Learn about what bilateral vestibular dysfunction is and what treatment options are available. This vestibular condition requires a different approach due to the nature of the condition. Learn more about this lesser known vestibular condition below.

What is bilateral vestibular dysfunction

Bilateral vestibular dysfunction (BVD) is also known and bilateral vestibular loss (BVL) or bilateral vestibular hypofunction (BVH). This is when both our left and right vestibular systems are affected by an event that results in reduced function. This impacts about 4% of individuals that have a vestibular disorder.

Bilateral vestibular dysfunction can be a result of:

genetics/congenital inheritance
bilateral neuritis (super rare but technically could happen)
bilateral Meniere’s disease
surgical
ototoxicity
undetermined reason (50% of the time we just don’t know why) [1]

Typically with bilateral vestibular loss, dizziness is not a main symptom. Balance tends to be the main concern that brings someone to the doctor. Those with bilateral vestibular loss tend to experience:

imbalance and unsteadiness. Especially in darkness
trouble with balance and walking on uneven surfaces. Darkness makes this even more challenging
oscillopsia or “bouncing vision”
little to no dizziness
Challenging to perform daily tasks and activities.

I have bilateral vestibular dysfunction, what type of progress can I expect?

The difference in bilateral vestibular loss is that both vestibular systems are impacted. This makes progress variable. With both systems impacted, it’s difficult to get the benefits of adaptation and habituation that is utilized in vestibular rehabilitation therapy (VRT) when only 1 vestibular system is involved.

VRT can still be beneficial. The goal is to promote the maximum amount of habituation and adaptation as possible while also working on ways to compensate for BVL. This helps many return to functional daily activities, but it most likely doesn’t look exactly how someone performed the activity prior to BVL. [2]

Bilateral vestibular dysfunction treatment options

As mentioned above, treatment will look different for those with BVL. Vestibular therapy will trial various VRT exercises to promote as much adaptation as possible. Finding ways to substitute and compensate movements will be a major focus of treatment. The goal of these compenstations is to get people back to their daily routines and activities, just in a slightly different way.

This might include using motion sensor night lights in the home to promote safe walking at night, or use of a hiking pole for safe walking on uneven surfaces. A popular hiking pole brand that physical therapists have recommended to me are linked here.

Part of treatment will be finding exercises to promote overall health and activity. Exercising and movement has many benefits to our overall health and well being. An animal study looking animals with BVL showed that animals who exercised on a regular basis were able to return to normal movement and ability. This might not happen exactly in the same way in humans, but movement is important! [3]

Another area of treatment undergoing development is surgical implants. These surgical implants act as vestibular prosthesis. There’s been great results and improvement in mobility, reduced falls, and overall quality of life at 6 months and 1 year out from surgery. There are a few clinical trials going on with the goal of making this an available treatment option for the public.

Disclaimer

Want to learn more about bilateral vestibular dysfunction and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

Disclaimer:

Sources:

(1) Lee SU, Kim HJ, Kim JS. Bilateral Vestibular Dysfunction. Semin Neurol. 2020 Feb;40(1):40-48. doi: 10.1055/s0039-3402066. Epub 2020 Jan 14. PMID: 31935769.

(2) McCall AA, Yates BJ. Compensation following bilateral vestibular damage. Front Neurol. 2011 Dec 27;2:88. doi: 10.3389/fneur.2011.00088. PMID: 22207864; PMCID: PMC3246292.

(3) Igarashi M, Ishikawa K, Ishii M, Yamane H. Physical exercise and balance compensation after total ablation of vestibular organs. Prog Brain Res. 1988;76:395-401. doi: 10.1016/s0079-6123(08)64526-4. PMID: 3217529.

(4) Chow MR, Ayiotis AI, Schoo DP, Gimmon Y, Lane KE, Morris BJ, Rahman MA, Valentin NS, Boutros PJ, Bowditch SP, Ward BK, Sun DQ, Treviño Guajardo C, Schubert MC, Carey JP, Della Santina CC. Posture, Gait, Quality of Life, and Hearing with a Vestibular Implant. N Engl J Med. 2021 Feb 11;384(6):521-532. doi: 10.1056/NEJMoa2020457. PMID: 33567192; PMCID: PMC8477665

Concussion treatment in 5 buckets

Learn about what concussion is, common symptoms, recovery timeline and the 5 main areas of concussion treatment. Dr. Madison talks with concussion expert Dr. Heisig in Vestibular Group Fit to go over the different areas of concussion and important treatment areas to consider. check out some of the great information below!

What is a concussion

A concussion is classified as a mild traumatic brain injury. Traumatic brain injuries are classified on a spectrum from mild to severe, we are only looking at concussion in this post.

A concussion occurs from hitting your head, or a sudden speed change that impacts the brain. You don’t have to hit your head for this rapid speed change, but is a common way concussions occur.

Imaging will not show a concussion. imaging can show blood clots, bleeding, or broken bones and other structures, but it cannot show a doctor that there is a concussion. This is determine by the method of injury and reported symptoms.

Concussion metabolic cascade

What happens to our body during an acute concussive event happens at the cellular level. The sudden change in speed creates stretching and shearing of the brain cells and neurons.

Sudden stretching and shearing of our neurons changes the balance of our electrolytes. These electrolytes are important for brain function and how our neurons fire. This sudden change in electrolyte balance results in random neuron firing and neural toxicity.

Getting our brain’s electrolytes back in proper balance takes a lot of energy and time. Typically around 3-4 weeks. During this time our brain is functioning in a metabolic energy deficit. Our brain has difficulty carrying out typical functions due to the metabolic energy deficit. This energy deficit leads to many symptoms people experience such a disorientation, fatigue, brain fog, headaches etc.

One way to think of this is with a circle or pie analogy. A full circle is the total amount of energy we have to perform daily functions. The electrolyte rebalancing is taking up a large part of this energy pie. This leaves a smaller amount of energy pie to do the typical activities our brain does. This leaves to picking and choosing certain activities, or having to take additional time between tasks to restore energy.

Rest or not rest? What research says about best concussion treatment

New guidelines in concussion have changed the way concussion treatment is performed. Typically in concussion treatment, someone might be told to rest for weeks, this should no longer be the case. Research shows that resting after a concussion for 24-48 hours and then gradually getting back into typical activities yields the best results.

Rest doesn’t mean sleeping all day. It means taking things a little slower than you normally would. This might look like a short walk instead of a high intensity workout, or limiting screen time with more breaks in between screen use. This can vary by the person depending on their concussion treatment buckets we’ll talk about next.

The goal with concussion is to gradually increase the intensity of activity to get back to your baseline. Again this can take up to 3-4 weeks. Listen to your body as guidance, new or worsening symptoms is your body saying that you’re taking on more than your body can tolerate. Take a note from your body to rest and recover and adjust the activity.

What are the 5 main buckets of concussion treatment

Recent concussion treatment and management has taken on a new way to help classify concussion to better include the many different presentations and symptoms someone with a concussion can have. A questionnaire tool called the CP Screen gives a series of questions that help determine the main categories of symptoms someone is experiencing. This screen has 5 main subtypes and 2 modifiers to help capture the main symptom areas to address on a person to person basis.

The five concussion treatment buckets are:

Autonomic and Exercise Intolerance
Visual Vestibular
Neck and Cervical
Hormonal and Metabolic
Psychological (Mental and Emotional)

In the next section, we’ll go into more detail on each of these 5 areas of concussion treatment. More than one can apply to someone with a concussion but breaking down into these categories can help determine how to prioritize treatment to address the major concerns being experienced.

5 buckets of concussion treatment cont.

1.Autonomic and Exercise Intolerance

Concussion can impact blood flow. This can lead to autonomic dysfunction such as lightheadedness, dizziness, tunnel vision or elevated heart rate when standing up. In other cases, symptoms might be gone at rest, and reappear during exercise or increased exertion. Graded movement, and testing such as the Nasa lean test or buffalo concussion testing performed by a medical provider can assist in working with you in exercise progression and treatment.

2. Visual Vestibular

A concussion can impact our visual and vestibular system making us feel dizzy, off balance, or even difficulty with reading, screens or eye strain. BPPV prevalence increases after concussion and should be screened as part of a comprehensive concussion assessment. VRT or vision therapy can further determine areas to work on to address these symptoms.

3. Neck and Cervical

Neck pain, stiffness, limited range of motion are common after a concussion. This again can vary based on the mechanism of injury and individual presentation. Focused treatment on the neck can assist with headaches, muscle pain, reduced range of motion and more.

4. Hormonal and Metabolic

Keeping the full picture in mind includes looking at lifestyle and other medical conditions someone has. Nutrition and hydration is key for overall health and recovery. Avoiding any allergies or food sensitivities is important to reduce stress and inflammation while healing from a concussion. Pre existing metabolic conditions such as a thyroid condition can also contribute to concussion symptoms and should be evaluated and ensure it is being properly managed.

5. Psychological (Mental and Emotional)

A concussion can create a major shift in how you’re feeling, your usual routine, or maybe even result in trauma from the event that the concussion came from. Those with a concussion will report feeling more irritable, anxious, depressed, or just not like their typical self. for concussion treatment, having a skilled professional to assist with mental health can be extremely helpful as part of concussion treatment. There are ways to see someone over telehealth or over the phone to make this essential healthcare more accessible and provide the privacy some may want. Check out some options here or here or here, yup that important!

Learn more with Vestibular Group Fit

Want to learn more about concussion and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

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Best steps to Treat MDDS (Mal de Debarquement Syndrome)

Learn about what MDDS is, how it can be treated, and other resources to learn more about MDDS management.

Diagnosis criteria for Mal de Debarquement Syndrome

Criteria for the diagnosis of Mal de Débarquement syndrome

Non-spinning vertigo characterized by an oscillatory perception (rocking, bobbing, or
swaying) present continuously or for most of the day.
Onset occurs within 48 hours after the end of exposure to passive motion.
Symptoms temporarily reduce with exposure to passive motion.
Symptoms continue for >48 hours. (More on this in the next section)
Symptoms not better accounted for by another disease or disorder.

MDDS diagnostic criteria has changed slightly to include a spectrum of time someone has been experiencing symptoms. This has been designed to help those get a diagnosis and begin treatment sooner which is a great addition. Here they are:

MdDS in evolution: symptoms are ongoing but the observation period has been less
than 1 month
Transient MdDS: symptoms resolve at or before 1 month and the observation period
extends at least to the resolution point
Persistent MdDS: symptoms last for more than 1 month

3PD vs MDDS: what are the differences?

When searching for answers and finding a diagnosis, it can be tough to know which description fits best. You can also have more than one vestibular condition to make diagnosis more challenging. Dr. Madison talks with Vestibular Group fit Members the differences between Vestibular Migraine, PPPD, and MDDS as well as treatment considerations if you have a combination of diagnoses.

In this blog we’ll briefly talk about some differences between 3PD (persistent postural perceptual disorder) and MDDS

3PD

People typically feel worse in car
Will typically feel worse with walking/movement
additional 3PD criteria can be found in this blog post here.

MDDS

People usually feel better in car
Will tend to feel worse with walking

Non-motion triggered Mal de Debarquement Syndrome

If you’re searching for answers, you might come across non-motion triggered MDDS. This area of vestibular research and classification is still up for debate. Some think this is a different form of chronic dizziness, or vestibular migraine, or something else. Time will tell where this ends up!

MDDS treatment: Dai protocol

A very popular protocol for MDDS treatment is the Dai protocol. A 2018 research study by Dai et al show that 75% of those undergoing treatment had significant improvement when followed for 1 year. This protocol involves a few important tests and equipment to follow and is best to be done with a provider knowledgeable in this protocol. If you’re in a place where a provider isn’t familiar, they can read research and implement the protocol with you.

More information on the Dai protocol can be found here.

A great treatment tool for MDDS or other visual vertigo can be found here through 360 Neuro Health. Talk to your provider before using to find the best dosage and progressions.

Mal de Debarquement Syndrome treatment continued

There are more treatment considerations than the Dai protocol. Medications such as SNRIs/SSRIs and benzodiazepines have been shown to be a beneficial part of treatment for some.

Other factors to consider as part of treatment include:

sleep
diet
exercise
stress management
vestibular exercises/VRT
mindset
neuromodulation

Dr. Shin Beh goes into detail on MDDS and treatment in his book Disembark, check it out here as well as other great books Dr. Beh has written.

Disclaimer

Interested in learning more? Check out this other blog post on Mal de Debarquement Syndrome

here.

Want to learn more about MDDS, and other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

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Learn tips for dating with a vestibular disorder. We cover dating, relationships and intimacy with Dateability cofounder Jacqueline Child.

Dateability: A Dating app for those with disabilities and chronic illnesses.

Dating with a vestibular disorder can be challenging or intimidating to begin after a receiving a vestibular diagnosis. Jacqueline Child is a co-founder of Dateability and talks with Dr. Madison oak about dating and intimacy with chronic illness and disabilities. Jacqueline encountered ableism on other dating apps, and experiences impacting her self esteem. In october 2021 after a feed tube surgery, Jacqueline expressed her wish for a dating app tailored to people like herself. Jacqueline’s sister proposed they make this wish a reality. Dateability aims to foster understanding, compassion and connection to provide a safe space where chronic illness is not a deterrent to finding meaningful connections and love. Learn more about this app here.

Dating with a vestibular disorder: 5 ways to navigate relationships — Meet Jacqueline Child, the co-founder of Dateability, a dating app designed for people with disabilities and chronic illness. In vestibular group fit, Jacqueline and Dr. Madison talk dating with vestibular disorders, chronic illness and ways to navigate dating, relationships and intimacy.

5 Suggestions when dating with a vestibular disorder

1.You’re more than your vestibular condition! Talk about other interests, projects or hobbies you have going on or hope to start!

2. Explaining your vestibular condition can be short and simple at first. Jacqueline compares it to how you’d explain your condition to a child. Remember, you’ve learned so much about your condition, that it can be overwhelming to someone that is learning. This can vary based on their exposure to the medical field as well (vocabulary and health literacy etc). Keep it easy, if they have follow up questions and you want to answer them, go for it!

3.If there’s an activity that doesn’t work great for you, let your needs known and suggest an alternative activity. When dating with a vestibular disorder, certain activities might not be the best for you. Instead of saying no to their suggestion, feel free to let me know that won’t work for you and suggest an alternative activity that works for you. For example swap out a bike ride for a picnic in a park, or maybe a tram bike that moves slower and multiple people steer and peddle.

4.Be honest about your needs early on. You don’t have to list them all out day 1, but when something comes up, mention the relevant information or accommodations needed. For example, if someone suggests a movie and the time is late. Casually mention that staying up late isn’t great for you, and see if the there’s an earlier showing.

5.Communication is key when dating with a vestibular disorder, and discussing your vestibular condition is a very vulnerable thing to do. Practice can help, whether it be with close friends and family, or going on some dates just to practice how you share your story with someone new.

Tips for Discussing Chronic illness in Dating or with your current partner

Communication is so important. Be honest about how you’re feeling, and limitations.
not communicating your feelings and needs is unfair to yourself and your partner. Expressing your feelings and needs is the best way for others to understand what’s going on. Assuming others can read your mind can make everyone frustrated.
hiding symptoms and pushing beyond your limits to appease others ends up backfiring in the end

Have a codeword or phrase to convey you’re not feeling well. It lets other know what you’re feeling without having to put it into so many words.
Longer conversations and explanations might not be necessary at first. But can be beneficial to have eventually to ensure understanding, trust, and building a deeper connection.

Navigating intimacy with vestibular disorders

Intimacy and sex is an area that is important to address when it comes to dating with a vestibular condition and relationships. This part of romantic relationships can be a source of apprehension when dating or looking for a long-term partner. Communication here is so important (sensing a theme about communication?).

Having a conversation outside of intimacy and sex can help. Knowing modifications or positions that are best, or how to handle situations when a pause is needed beforehand will help in the moment to do what’s best for your body. This may feel uncomfortable or awkward, but communication is about trust, and knowing your partner cares about you to support you and want what’s best for you in all aspects of life.

Disclaimer

Want to learn more about dating, relationships, other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

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Learn more about gaining self compassion with your vestibular condition and how to adapt mindfulness practices to best suite your needs. Fellow Vestibular Group Fit member Melina is a certified mindfulness instructor and shares her expertise on self compassion and mindfulness but with a chronic illness and vestibular focus.

Meet Melina

Melina is a certified mindfulness educator who offers classes in her community and as a professor at the University of Rochester. She is also a member of Vestibular Group Fit. Her research and teaching interests include music and the body, the history of somatic practice, and embodied pedagogy. Because she lives with recurrent BPPV and vestibular migraine, much of her meditation teaching focuses on mindfulness for chronic illness and pain.

What is self compassion

Self compassion can feel like this ellusive thing everyone talks about but doesn’t really understand. Melina offers a great definition. Self compassion is about acknowledging struggles, offering ourselves comfort, and extending kindness to ourselves and others facing a similar experience. You are not alone, others have felt exactly what you are feeling now, and that shared human experience unites us to humanity.

Basically, self compassion is treating ourselves the way we would a close friend who is struggling. We want to extend ourselves the same acceptance we have for our close friends or family. We embrace them for who they are, imperfections and challenges and all. Self compassion is doing the same for yourself.

Self compassion has positive benefits, including calming our nervous system, and can be an important tool in healing and growth. Self compassion can enhance other mindset work you’re already doing for continued growth and impact. Using self compassion with a vestibular condition can assist in weathering flares or daily challenges while becoming resilient for future challenges.

How to adapt mindfulness practices for you

1.Have a gentle approach. Don’t force changes in thought. Allow yourself to be present in your discomfort. Respond with kindness and allow your body to focus on other thoughts, feelings and sensations as one retreats and another announces its presence.

2. There is no set guidelines you must follow. Pick and choose what you like. There are different anchors available to work on being in the present. A popular anchor is focusing on your breathing. Try the “choose your own anchor” practice. For this practice, be aware of your vestibular symptoms, and in addition to ours symptoms, focus on something pleasant or neutral. This acknowledges your challenges while finding moments of peace and balance within.

Not sure about positive or neutral areas to focus on? Visit the post on mindfulness and critical thinking that dives into this more here.

3. Create a mindful and safe space. This can be in any position you find comfortable, finding anchors that best fit to your style and needs, picking and choosing different practice aspects that you enjoy.

Melina also recorded three tracks to work on self compassion, mindfulness, and with a vestibular focus. These are available to vestibular group fit members, if you’re interested in becoming a member click here.

Other helpful tips for self compassion with a vestibular condition

1.Treat yourself like you’d treat your best friend. Having symptoms is not your fault, don’t beat yourself up. Treat yourself how you would a friend going through the same struggle.

2. Finding kindness for yourself. This can be stating a phrase like “May I be kind to myself at this moment?” or “it’s okay, I’m here for you”. Consider imagining a pet or person and what you’d say to comfort them. Imagining them may also generate a feeling of kindness or warmth.

3. Remember that you are not alone. Part of the shared human experience is suffering. Say to yourself “I am not alone”. This shared experience connects us to so many others, people we know and strangers. All of this is part of being human.

If you’re interested in learning more, Melina recommends David Treleaven’s work “Trauma-Sensitive Mindfulness”. Learn more about his work here.

Disclaimer

Want to learn more about mindfulness, listen to recorded tracks to guide you through self compassion, other vestibular tools from the experts and be a part of a supportive community to get back to your daily life? Find out more at this link: https://tvd.flywheelstaging.com/about-group/

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