Chronically Spinning - Let's Talk About Vestibular Disorders
I’ve always had vestibular problems, from motion sickness so severe I’ll throw up to a BPPV (Benign Proximal Positional Vertigo) diagnosis when I was in high school for getting dizzy while laying flat in bed. However, ever since my first brain surgery things haven’t been quite right overall and those slight vestibular problems are now exacerbated to the point of debilitation and interfering with my daily life. Today, I want to share my experience and what the testing leading up to my true diagnosis and treatment looked like.
An image depicting things spinning, the visual and sensation you get when you’re suffering from vertigo or an inner ear imbalance.
I really hope none of you ever have to experience the daily dizziness or feeling of being dizzy as I have over the last couple of years. ever since my first brain surgery, things have always been a little off, and rightfully so as they did disturb my cerebellum which controls your body’s balance. persistently though, i have been getting that feeling of being dizzy or spinning, or feeling unbalanced on a daily basis doing the most basic of things, such as tipping my head to the left or right while styling my hair, tipping my head up or down, when i walk up and down the aisle of the grocery store, or even when i lean over to scoop dog food out of the container. all of these daily things that i do have become increasingly difficult.
after dealing with this for roughly two years, my doctors and i decided it was time to get a more thorough workup. considering my vision was now corrected, and I no longer see double which was contributing to a fair amount of the issue, we’d be able to more successfully diagnosis the root cause of the persistent dizziness. in mid-june i saw an otologist (dizzy ear doctor as he referred to himself) and had an audiology test done. the audiology test results were normal and the simple in clinic tests he did lead him to believe that while he sensed I may have some sort of inner ear imbalance, i didn’t fit the classic textbook case for anything inner ear related (i.e. verTigo). i had three different next steps to choose from…
Suck it up and deal with it, I did have brain surgery after all and I already struggled with balance and dizziness issues prior to this
Be referred to an Otoneurologist (dizzy brain doctor) and get a Vestibular Battery Test done to rule out any other underlying illness or vestibular issue
Immediately start treatment of Vestibular Therapy
I decided to go with option #2. I wanted to make sure that i ruled out all possible issues or underlying illnesses before just jumping into vestibular therapy. the Otologist was happy to make the referral and i was able to be seen in just a few weeks.
vestibular Battery Test
The vestibular testing was going to be a couple of hours, and definitely not the most comfortable thing to sit through. essentially, the testing done was going to trigger my symptoms (Nausea, Feeling dizzy/spinning, and balance problems) in order to better gauge what was going on. The test was in 2 parts:
Several rounds of testing sitting in a dark room and strapped into a mechanical chair that would move at different speeds and in different directions
Several rounds of testing in a lit room, stationary chair - the final test required pressurized water flowing in and then out of the ear under two temperatures; hot and room temperature
the first Part of the testing requires you to sit inside a dark room in this mechanical chair with a headset and goggles on that have a camera with infrared lights attached. the purpose of being in the dark room with the goggles on was so that as the chair moves in different directions and at different speeds, they can watch for the nystagmus (eye movements) to see what is being triggered internally and how your body is responding, considering your brain and eyes do not have light to guide them and show them what is happening. the technician moves the chair slowly in a circle starting clockwise. this lasted for a few minutes. the chair would stop and then we would go in the other direction. throughout the course of the test we went in both directions, multiple times, and at a different speeds. Next they have lights up on the wall which will spin while you are also moving. Again, this is triggering your vestibular system and the connection between the movement, your inner ear, eyes, and brain to see how it responds. Finally, the chair moves in really quick motions; both spinning right to left and back and forth jerking motions.
When that test is over the technician has you close your eyes and rest while they unstrap you from the mechanical chair and take the goggles and headset off. Once that is done they take you into the hall to have you sit in a chair and stabilize before moving to the second portion of the testing. To say that I was completely unbalanced and severely nauseous would be an understatement. Once I was able to sort of regroup we moved to phase two of the testing.
Phase two has you in a lit room doing some similar testing without moving in a chair. Again, the technician will attach goggles with infrared lights and cameras on to watch your eye movements. In this room, you go through a series of tests where you are looking at lights on a wall again as they move. next they have you lay down and they turn your head in different positions. You usually stay in the those positions for about 40 seconds. there are 3 positions; laying down head turned to the left, laying down head turned to the right, and laying down looking straight up. immediately following one position they will sit you upright very quickly, again triggering your vestibular system as it works to understand what is happening. the last part of the testing in that room they use the pressurized water that is hot and at room temperature. They flush it in and out of your ears, bouncing the water repeatedly off your ear drum for 40 seconds on each side. the hot water and room temperature water cause your body to have different reactions, therefore triggering different responses from the vestibular system. while they are running the water in and out of your ear they have you close your eyes. once they turn the water off you are to open them. in the camera you are looking at little lights, and of course they spin as your system has been triggered and you become dizzy. one side was clearly worse than the other for me, and was more intense with the hot water vs the room temperature water. the spinning was intense and the level of nausea was extreme. after about a minute they turn on a greenish/yellow light for you to focus on which is supposed to help calm your eyes and the nystagmus and reduce the sensation of being dizzy. After it’s all done, they have you sit upright for a few minutes with the goggle’s off allowing your body to settle and regroup.
Once all of this testing was done we were sent immediately to the otoneurologist’s office for the results and follow-up appointment. the testing ended up being about an hour and a half, and it was about thirty minutes before the results were received by the doctor. once we got into the exam room the otoneurologist did the following;
reviewed my symptoms, medical history, family medical history, and asked some key questions to clarify any information.
a reflex test, lookEd at my eyes and the optic nerve, looked into my ears and throat
a few simple vertigo tests, had me quickly lying flat with my head tilted to the left (similar to the testing done in the vestibular lab), and then lying flat with my head tilted to the right, and then lying flat looking straight up.
Once that was done, he then reviewed with me the results of my Vestibular battery test that i had done earlier that morning, gave his diagnosis, and recommendations for treatment.
diagnosis and treatment
the diagnosis was that i had lost partial function of my left inner ear. through the battery of tests they did they were able to identify this as being the key cause to my ongoing balance and dizziness issues, especially when moving, turning, or lying in certain positions. with that said, it can be treated, not necessarily cured, through many months (9+ months) of vestibular therapy. for someone like me who has suffered through some brain injuries it will take longer than average for us to treat the issue. essentially the vestibular therapy will be a series exercises that will trigger many of my symptoms, but ideally force my brain and body to listen and use my right inner ear to maintain my equilibrium.
vestibular therapy takes a lot of repetition and persistence for it to be effective. the exercises have you focusing on lots of eye movements fIxated on stationary objects, or moving objects. there is a focus on balance and hand/eye coordination. some examples are below;
picking two objects: one on the left and the right side of the room, sit between them and shift your eyes back and forth between the two.
pick a stationary object in front of you and move your head up and down keeping your eyes on the object, then from left to right keeping your eyes on the object
balancing on a balance board or foam square, standing tandem on a foam square or uneven surface
having a series of post-it notes on a wall, in either a clock formation with numbers on it or Compass Formation. have someone call out numbers or compass directions and ask you to point and touch the post-it that Correlates. This focuses on depth perception and coordination
having someone hold a bright object and have you follow it as they move it with your eyes
The list of vestibular activities can go on, these are just a few that I have started with since beginning my 9+ month journey of vestibular therapy. the overarching goal is to trigger your symptoms and train your brain and body to learn to balance again, leaning heavily on the strong side of Your VestiBular systEm to do so, as FunctiOnality has been lost on the other side. therapy activities should be done 2-3 times per week, and at least 3 times per day.
if you are someone who has suffered from dizziness or balance problems, you should consult with your primary care physician about yoUr symptoms and treatment. You may need to see a specialist to get a proper diagnosis. treatments for conditions like mine, can be done at many outpatient physical therapy/rehabilitation centers that also specialize in vestibular therapy.
have you ever suffered from dizziness or balance issues and have been successfully treated? do you have more questions about my symptoms or testing? drop a comment below!