I am a physical therapist who works in a specialty practice clinic treating vestibular disorders. It’s truly my passion to work with people who are dizzy, have vertigo, are feeling unsteady or experiencing falls. It can be a very isolating experience to feel these symptoms as they are invisible to your family and friends.
I developed a vestibular disorder myself and have had to learn how to manage my symptoms, my career, my family and my social life in a whole new set of circumstances. As a result, I have learned a lot about managing life with a vestibular disorder from my personal experience as well as in helping my patients navigate their own challenges with their vestibular disorders.
It can be a very isolating experience to feel these symptoms as they are invisible to your family and friends.
After the birth of my second child, I started to notice a myriad of symptoms. As most things can be blamed on hormones in this post-partum time period, I lumped these new symptoms into the category of “hormonal changes”. However, the problem only seemed to get worse. I started noticing that I was having some trouble with my memory and feeling like my thinking was slowed- a term I like to call “brain fog”. I was experiencing lightheaded and wooziness with daily activities like cooking a meal, playing with my kids or even turning too quickly when my name was called.
I blamed my symptoms on anything and everything. Up too many times at night with new baby? Horrible light sensitivity and dizziness the next day. Must be sleep deprivation. Overdo it in an exercise class? Pay for it later that night with nausea and headache. Must have tweaked my neck wrong in class. This progressed to more constant experiences of lightheadedness, neck pain, nausea, headaches and sensitivity to light. All the light. Computers, phones, flourescents, oh my. It all made me sick to my stomach and I wanted to retreat to my dark bedroom immediately. Work activities felt like torture and home chores were neglected as I didn’t have anything left to give by the end of the day. I was calling in sick or leaving early at least once per week and felt wiped out no matter how much I slept.
Many of my migraine episodes don’t have any pain! I taught this often to my patients however it does make it harder to recognize in yourself.
To anyone dealing with a vestibular disorder, these symptoms are very familiar. It took me several months to come to the realization that my symptoms were probably due to more than hormones, sleep deprivation or stress alone. These all contributed but the cause was probably vestibular migraine. Typically, several months would be a quick diagnosis for someone suffering from the above symptoms but I AM A VESTIBULAR PHYSICAL THERAPIST! It wasn’t until I listened to patient after patient describe the exact symptoms and daily struggles that I was experiencing that I started to connect the dots. I was falling prey to the many misconceptions regarding migraine.
A migraine is a headache. Sure, lots of migraines include a headache but a headache is certainly not the only symptom of a migraine. Many of my migraine episodes don’t have any pain! I taught this often to my patients however it does make it harder to recognize in yourself. A migraine is not a headache, but instead it can be thought of as a disorder in which the brain is more sensitive to what is going on around it. This can explain the symptoms of feeling disoriented in busy environments, feeling like a strobe light is being shone in your eyes just when trying to do computer work, feeling a sense of imbalance just because you turned your head to answer your child. Normal sensory input is interpreted at a much higher intensity.
Migraines don’t change. Migraines are tricky. They can change over the course of a few days or they can change over the course of your lifetime. There can be phases of a migraine: prodrome, aura, headache, postdrome. These might occur over the course of 24 hours or over the course of several days. Many people experience a change in type or frequency of their migraines. Since my diagnosis of vestibular migraine, I can look back at two previous episodes of more “typical” migraine symptoms. These episodes included severe neck pain, headache, light and sound sensitivity, nausea and vomiting that lasted about 24 hours. Both times I blamed my neck, thinking I had overdone something physically (which in retrospect may have been true as a trigger to my migraine). Turns out I likely did have infrequent migraine episodes that weren’t diagnosed because they happened 5 years apart. I suffered through and forgot about them following. In contrast, my new symptoms would fluctuate in severity but would never completely clear. Many people, like me, have undiagnosed migraines in their health history that they attribute to something else. You can go years without episodes and migraines can have different qualities throughout your lifespan. Like I said, tricky.
My symptoms are constant, migraines are not. With vestibular migraine the migraine episode may not be constant but the vestibular symptoms absolutely can be. My symptoms were affecting me almost 100% of every day. The only time I could feel somewhat normal was to bury myself under my covers. Cue the onset of anxiety and depression, as I felt somewhat normal when isolated and miserable when interacting with family, friends, coworkers and patients. The fact that vestibular symptoms can be present before, during, after or independent of a migraine event often makes the diagnosis more difficult. It did for me and I already knew this fact!
Ultimately, I went to my doctor and presented the facts of my symptoms as well as my suspicion of vestibular migraine. I hoped that she would disagree with my hypothesis but alas, I was right. Vestibular migraines. She recommended an abortive medication and vestibular rehabilitation, jokingly asking me if I knew any good vestibular PTs 😊 I set off on my journey of migraine management, determined to learn how best to manage my symptoms both for myself and for those of the patients seeking my care.
What I have learned
Here’s what I have learned from the combined experiences of myself (case study of 1) but also after working with hundreds of patients:
- Migraineurs have inherited a sensitive nervous system. Thanks Mom! Your body needs to maintain equilibrium to a more careful degree than someone who does not have migraines. The faster you understand this, the easier it is to manage your symptoms.
- Vestibular therapy. I mean come on, I’m a Physical Therapist who specializes in vestibular rehabilitation. Did you not think this would be part of this? In all seriousness, vestibular therapy has been found to be effective in managing all of the vestibular symptoms I described above, including headache. It is most effective when combined with lifestyle changes, which I’ll describe below. Be consistent with your exercises and find a vestibular PT if you don’t have one.
- Routine is KEY. I have always thrived off routine but never before had I felt physically worse due to a lack of it. (My new baby didn’t appreciate my need for routine!) My brain clearly needed a more solid foundation on which to build my day. My symptoms were and continue to be best managed when my routine is regular. Spontaneity has its rightful place, but it has to be the exception, not the rule.
- Too much or too little can rock your world. Go to bed and get up at the same time every day. Wait, even on weekends? Vacations? Yep and yep. You might be slightly more lenient but I’ve found that the rest of my day tends to hinge on getting the same quality shut eye regardless of the days and activities ahead of me.
- Find a reusable water bottle that you enjoy drinking from. That sounds strange but in my experience, I enjoy drinking from a straw more than a contraption I have to open up each time. You do you, but find one you can drink lots of water from consistently.
- Skipping breakfast is a sure fire way to make my day much more difficult. Plan it and enjoy it. I thrive on make ahead/grab and go options such as overnight oats or hardboiled eggs.
- I’m convinced this is pretty much the answer to everything. Your body was meant to be in motion, so keep it in motion. Make this part of your regular routine. I have found activities I enjoy such as yoga, exercise classes and walking that I do on specific days of the week. If my schedule changes, I find the time for a walk at the very least. Aerobic activity (walk, bike, elliptical, etc.) has been found to help with migraine management when performed 3-4 times per week for 20-30 min sessions. If you are just starting out with exercise, start here! Regular physical activity also promotes better night time sleep. Remember how we talked about sleep? More exercise = better sleep. Better sleep = less migraines.. See where I’m going with this? Go for that walk!
- Spoon theory for management of chronic health conditions. (Google it for specifics) The basic premise here is that you only have so much energy to spend in one day. If you spend too much energy today, you end up spending some of the energy meant for tomorrow. This means you have less energy to devote to tomorrow’s tasks and end up feeling worse tomorrow because of what you did today. This takes some practice and planning- I find looking at the week ahead and scheduling additional tasks, errands, etc. evenly helps me from overdoing it on any given day. I also find that making a to-do list with “must-dos” and “would be nice to dos” can be helpful. Should I feel more symptomatic that day, the “would be nice to dos” automatically get moved off of today and onto tomorrow.
- Too much computer work without enough rest breaks is a common precursor for neck pain and postural issues. Your upper cervical spine takes the brunt of these improper postural positions and is also a large contributor to migraine episodes. Be diligent about good posture!
- Talk to your doctor before beginning any supplements. My personal regimen (developed through recommendations at continuing education courses, discussions with my doctor, reading other blogs and talking with others with migraine) is as follows:
CoQ10 200 mg
Vitamin B2 (Riboflavin) 100 mg
Magnesium L-Threonate 2000mg
As strange as it sounds, I think it has been a blessing to have been diagnosed with vestibular migraine. While I cannot say I enjoy the symptoms, it has forced me to live a more balanced lifestyle and be more aware of how things like stress, anxiety and lack of sleep can affect my function. I have also been able to be a more empathetic vestibular therapist as I can truly relate to, problem solve with and cheer on my patients who are on this same journey of vestibular disorder management. My patients have also taught me many things about my own symptoms through their experiences. If you are reading this with a new diagnosis of vestibular migraine, know that management is absolutely possible.