Time and time again I have heard from my clients ....
“I went to my doctor [primary care, ENT, or other] and they just didn’t understand how I was feeling”.
“I feel so stuck and frustrated”
“I thought this was my new normal and I just had to learn to live with this”
"My doctor told me I just have anxiety"
"I was told I have vertigo and given meclizine but no other answers or solutions"
My patient Sam had seen 4 other specialists before finally making her way to me, here is what she had to say:
Sadly, Sam's story before coming to me is the norm when it comes to dizziness, vertigo, and migraines.
But I am here to help to help educate you so you can be your own best advocate to getting yourself the right help.
Common steps to getting a vestibular diagnosis
Many of my clients seek the following route when dealing with vertigo.
Step 1: Emergency room (check out: how to know if my dizziness is serious)
Step 2: Primary care doctor (wait weeks/months)
Step 3: ENT (wait weeks/months)
Step 4: Neurologist (wait weeks/months)
Step 5: Maybe another ENT and prescribed some medication as a “band-aid” (wait weeks/months) Step 6 (or later): FINALLY vestibular therapy.
I’m here to give you some good news.
You don’t have to wait, worry, and wonder about your condition. Instead you can see a vestibular therapist as soon as your symptoms start.
You have direct access to a physical therapist, which means that you do not need to see all these different physicians, but instead can contact and get evaluated RIGHT AWAY by a vestibular physical therapist.
Finding the right provider
Physical therapists hold clinical doctorates and are expertly trained to help assess all your body’s systems and perform tests and measures to identify red flags. If we identify any red flags during your evaluation or your care, we will tell you that we feel it is in your best interest to consult with your family doctor and/or have further medical workup.
So there is no need to worry!
Physical and occupational therapists who are trained in conditions of dizziness and vertigo are called vestibular therapists.
Now, it is important to note that there is no standardized certification for physical or occupational therapists to perform vestibular therapy.
So whether they have performed hundreds or thousands of hours learning vestibular therapy, or have taken a 2 hour online course, a professional can claim to perform vestibular therapy or be a “vestibular expert”.
Because there is no standardization, your experiences can be very different from one profession and to another even just with vestibular therapy.
It is so important to connect with a vestibular therapist or specialist who has advanced knowledge and training in vestibular therapy and vestibular conditions (beyond just a weekend course).
A great place to start is VeDA (vestibular disorders association) directory.
VeDA is a nonprofit organization that “Envision(s) a world where vestibular disorders are widely understood, rapidly diagnosed, and effectively treated so patients can restore balance and regain life.”
They offer lots of online and community resources for those suffering from vestibular disorders.
Once you connect with a provider here are a few questions you might think of asking them:
What kind of training have you done in vestibular rehabilitation/therapy?
How many courses (or hours) have you trained in vestibular rehabilitation/therapy?
What kind of vestibular conditions do you feel comfortable with treating?
How much of your caseload consists of patients with vertigo, dizziness, motion sickness and/or migraines?
It’s okay to interview the provider, you need to have the trust and confidence that they are the right person to help you with your condition.
If you don’t like their answers, that’s okay. You just may not be the right fit together.
Reasons why your doctor may not understand your dizziness and vertigo
1. Lack of awareness
Vestibular disorders are often overlooked or misdiagnosed because many healthcare professionals are not familiar with them.
These conditions are not taught in many entry level programs.
I know for myself, we had one 4 hour lecture on it in school and I think one test question on my boards. It wasn’t until AFTER I graduated with my doctorate in physical therapy did I really pursue advanced coursework in this field.
They may not be aware of the symptoms or the best way to diagnose and treat these conditions and that’s okay, not everyone will be. But it’s important to connect with someone who does.
2. Complexity of symptoms
Here are just a few vestibular conditions:
And the list can go on!
Your family doctor and even a general ENT commonly don’t have specific education and expertise in these areas.
These vestibular problems can present with a wide range of symptoms, including dizziness, vertigo, imbalance, pain, motion sickness, nausea, and more. These symptoms can also be associated with other medical conditions, which can make it difficult to diagnose vestibular disorders.
Vestibular problems can be misdiagnosed as other conditions, such as anxiety or the wrong type of vestibular disorder, which can delay the correct diagnosis and treatment.
I have seen patients get brushed off by other medical professions because they are anxious about their symptoms. Keep advocating for yourself!
4. Incomplete assessment
All of our examinations include taking a thorough medical history. Honestly, this is a HUGE component of vestibular conditions. Since, unlike a strained muscle, I can’t touch or feel the issue. The dizziness and vertigo you are feeling is subjective, and can be different from individual to individual. So I spend A LOT of time here just talking and getting to know what you are feeling and learning about you and your family’s medical history.
During a physical exam, we look at all your systems of balance to find out where your weakness is. This can look like assessing your vision, eye movements, balance, coordination, and positional and movement tolerances.
In our in-person examination we utilize specialized infrared goggles and state of the art virtual reality testing for objective measurements and screenings for the health of your balance system to further identify any areas of weakness.
If your doctor did not perform these tests (or similar) or refer you to a specialist, they may have missed the diagnosis.
"Vertigo" is not a diagnosis- it is a symptom of a deeper rooted condition. That would be like going to your doctor with shoulder pain, and their diagnosis is “pain”. If your physician gave you a diagnosis of vertigo, it’s time to look into another medical opinion.
5. Patient communication
Finally, it's possible that you did not communicate your symptoms clearly or accurately.
This is normal as these symptoms are REALLY hard to make sense and describe to anyone who has not heard of them.
Here are a few tips to help you use the right words for describing your symptoms:
Vertigo: If you’ve ever felt that the room (or the world!) was spinning, you know you’ve had vertigo. This sensation can last for seconds, minutes, or hours depending on the condition.
Dizziness: this is a feeling of "foggy" "woozy" or "light-headed". This happens on "inside".
Imbalance: feeling unsteady, which may lead to falls.
Try to journal and take note of your symptoms here are a few things to write down:
When did your symptoms start?
How long do they last?
Was the room spinning? (vertigo) or do you feel more light-headed and floaty (dizzy) or are you afraid of falling? (imbalanced)- or a combination of all three (be specific when you feel which symptom).
What makes it better or worse?
If you see a provider with your symptoms and these details outlined, it will greatly help bridge the gap of communication between how you are feeling and getting you the right help.
Include any other questions about your symptoms or your anxieties related to how you are feeling.
If it doesn’t seem like your provider is able to help you, spend enough time with you, or in general you are having a feeling that they are not the best fit for you, it’s okay to seek out another provider.