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Shah Rukh Khan Quote
Intensive Care at
My background –
I’m a 38 y/o professor of psychology with a focus on emotion. Which means I care a lot about scientific proof and a do a lot of practiced research to figure out the world.
I’ve also been “a little bit dizzy” and “a little bit nauseous” on and off for about a year.
In April 2019 I had a single 24-hour dizzy spell. I later couldn’t shake a vague sense of dizziness (that felt like it existed in my right eye) and started to experience tension type headaches and terrible TMJ symptoms. I had an MRI to rule out “all the scary things,” and it came back clean. I was referred to a neurologist and was basically asked to “wait and see” for a few months. I visited an optometrist, thinking that a change in my vision might be the underlying culprit. They (and one of their peers) confirmed that my prescription had in fact changed (my left eye needed a little more help at near, and my right eye was trying to do more of the work) and they tried to fit me three different times without much success. My eyes rejected each new prescription after a few days and I slowly lost my ability to focus at near tasks.
I saw a different optometrist who suspected that I was experiencing a change in the ability of my eyes to work together (binocular vision), as distinct from their ability to see separately (20/20). He prescribed a new pair of glasses, but I was back in his office the next week with a sharp pain over my right eyebrow. He suspected that I was experiencing non-specific “neuralgia” and suggested that I take anti-inflammatories and use heat on the back of my head. These remedies worked for a few days before I started to experience acute pain into and behind my right eye and dizziness in response to visually stimulating environments (airport terminals and subway tunnels and busy crowds). Back to the ophthalmologist who deemed my eyes the “healthiest he would see all day” and ordered an MRI to rule out a sinus infection. You guessed it, all clear! So, back to the neurologist for “pain with no physical cause.”
It takes several weeks to get an appointment with a specialist so, by the time I saw the neurologist I had already been to see a GP for an inflamed stomach (caused by the anti-inflammatories on an already sensitive digestive track). The neurologist suspected that I was having “something like a weird migraine” and offered to try to treat my symptoms that way, prescribing a low dose of a tricyclic antidepressant that has shown promise with nerve pain. This was the first I experienced some relief – the sedative quality helped me to get some sleep (I hadn’t had more than 4 hours of sleep a night in the past month), and helped to abate the searing pain. But I was still at a loss for the cause, and my inability to read or do other tasks at near. Around the same time in August I found my way to a developmental optometrist, who worked to find me an eye glass prescription that settled some of my persistent dizziness and set me up on a course of vision therapy to teach my eyes (and brain) to see more efficiently.
It was supposed to take about 15 weeks to correct my dysfunction (convergence insufficiency and impaired visual ocular motor reflex). I did my homework steadfastly, every day, and showed up for appointments for an hour a week to get hands-on guidance from their trained vision therapists. And the exercises did seem to help. I slowly started to feel able to be back in the world again…and then something changed in the way my brain processed the exercises and information in general. My eyes started to suppress, I began to have intense anxiety spells, that sometimes coincided with visual symptoms (like visual snow and blinking lights when I closed my eyes), sensitivity to sound, and I started to experience aphasia (an inability to find words) during these spells.
I brought a growing list of symptoms to my specialized optometrist (including increased motion sickness/dizziness, and an inability to traverse high visual demand environments like super markets and a feeling of pressure in my head when I was in these spaces). He told me that I was responding to the treatment more like a patient with a concussion or a mild traumatic brain injury, but that he wasn’t sure why (I had not experienced any head or neck trauma that I could recall). I talked to my neurologist about these symptoms and the post concussive similarity – he agreed, but only offered to treat the anxiety with medication (to increase my threshold for overstimulation). He referred me to a doctor with degrees in neuro-opthamology and optometry at my request. My eye test showed normal functioning.
They believed that I was only having migraines and “sometimes people are dizzy and we just don’t know why.” I understood this scientifically, but from the patient perspective, it was unacceptable to me. I had been off work since August with no return to work (or life!) in sight. This doctor also asked, as had others before, “what have you been experiencing that made you so anxious?” to which I replied – nothing, this anxiety feels like it’s coming from my body! I have practiced meditation and CBT for 15+ years, I’ve studied emotions and the stress response professionally and taught about it to others, and over the previous 6 months I’d been throwing everything in my playbook at my anxiety. I’d been meditating consistently, journaling, working with a psychotherapist, doing yoga, exercising regularly and taking deep and intentionally paced breaths, nothing helped! I continued to feel invalidated by the suggestion that the symptoms for which I was seeking help could be remedied by a change in context or by continuing to try harder at stress relief.
All of the doctors that I saw where kind. They listened well, and they took thorough notes. They were thoughtful in their handling of my condition, even as they struggled to answer some of my questions: What is a migraine? What causes them beyond genetics – what’s the immediate stressor? Are there lifestyle changes that are relevant to consider? My condition exists at the intersection of a number of fields which left many of them limited in their knowledge and practice of how to help.
I started to broaden my search. One of the biggest challenges for me has been balancing a need to do research on my condition and coordinate my care with various providers (who do not work together and are not familiar with each others’ fields) all while also experiencing symptoms. I had also not been able to use a computer since May 2019. By this point it was January 2020. So, I started googling in small screen-time doses.
I learned about post concussive symptoms, but I wanted to know what drove the underlying PSC experience – was it a common change in the brain? A change in how one of the sensory systems worked? In particulars about the patient and how they process change or their sensitivity to stimulation? Who are the people who work with people with concussions? What tools and strategies do they use for which symptoms? Which seem most promising? Which have evidence to support the investment in time and money? I came across an instagram account with loads of information – Molly Parker, PT, is a physical therapist that also experienced a concussion herself and had already done a lot of the work for me. Here I learned about vestibular therapy and who performs it. No doctor had suggested this treatment, in large part because my examinations were always normal.
I learned that vision therapy was sometimes part of the equation, so I was on the right track. I’d been working steadfastly to get my eyes to work together and tolerate work at near distance. While I’d made some great strides in my ability to see closer to my nose, to converge images from two eyes into one, and have doubled my depth perception (from borderline dysfunctional to near perfect). I was now working to correct some overcorrections – my eyes had learned to converge so well that they were now stuck in convergence and needed to learn to diverge, as I’d still been responding to near tasks with embodied panic (fight or flight!) and chronic dizziness. Some part of the puzzle was still missing and I’d hit a wall with treatment.
I googled dizziness and found the Chicago dizziness and hearing clinic, which had a lot of great information about visual vertigo (sometimes overlapping with chronic subjective dizziness and with PPPD). I was sure that I had acquired visual vertigo, and heartened by even the small suggestion that these episodes often have an initial objective trigger – it was perhaps, all in my head/brain, but it was not a hysterical or psychogenic experience. But didn’t know what type of professional to see to get treatment without flying to Chicago every week. The CDH Clinic has some guidelines on their website, but combing through them was difficult.
Then I found the functional neurology center…and it was a 15-minute drive from my house!
My Intensive
The FNC offers an easy online consult and I approached it as a way of gathering information. Lori was a wonderful first contact and I was heartened to learn that, “yes, many of our patients have some form of your symptoms and we have success with treating them all.” I was hesitant to book a week long intensive without first meeting the doctor(s), and understanding what I would be paying them to do. I was where, I imagine, many of their patients are – out of work and trying to weight whether a big investment up front would allow me to resume my life, or leave me not much better and without that money to devote to other necessities. After talking to Lori, the discovery day seemed like the best bang for my buck.
After nine months of symptoms with only occasional and temporary relief, I entered the clinic skeptically. The walls are covered with quotes about hope and I found my self thinking, “we’ll see” in response. The front desk staff were warm and inviting and I found myself feeling at ease with the uncertainty of this beginning. I was introduced to the team of doctors and students that would be working with me. Our first session began with a thorough patient history, which I’ve become tired of repeating – I feel a bit like a running list of symptoms. But this was the first time that I received head nods and validation in response to some of the stranger ones, and in regards to my belief that my anxiety was more in my body that in my conscious mind. The team were able to test my eye movements in ways that I had not been tested before – sure, my eyes were moving left and right as they were supposed to but were they hitting their mark exactly? Turns out, no! They also examined some things that I would not have thought to report to any of the medical doctors that I had seen – my gait was abnormal (I hadn’t noticed!), my timing on movements was off and too early (I had no idea!), my posture was hunched (this one I knew about, but thought it was because of lack of will and muscle tone), and my shoulders were imbalanced (I’d received treatment for this through PT 20 years earlier that never corrected it), I had rigidity in the right side of my body (I knew this but they could guess where it was coming from without my explanation). They also discovered that my eyes were experiencing convergence spasms every 4 seconds and remarked, “of course, you’re dizzy.” I was hooked. The therapies that they tried with me for the intro day were pretty basic – they did some cranial sacral head holding and body rotation, we worked with some gaze stabilization (that was quite different from the kind that I had mastered in vision therapy), and they used a facial nerve stimulator to access my vagus nerve (which has a lot to do with control of the automatic nervous system – breathing, heart rate, any and all things stress or calm). I felt immediately calmer and they could see differences in my gait and posture. They felt hopeful they could help me and they explained that we would take it day by day. If I wasn’t experiencing changes I could feel by day three, we would re–evaluate the care plan.
They talked me through the treatments. Though I had never heard of functional neurology before, all the treatments they used with me I had learned about through my research – vestibular therapy, visual dependence, laser therapy, etc. So, all evidence based. In considering this visit I spoke with a friend who has a Ph.D. in Biomechanical Engineering – he told me vestibular therapies are really new and people will have differences in opinions about what works. The approach offered by the FNC made sense to me – they were going to work with my eyes too, but they were going to work with my eyes in movement (not stationary, as I had been practicing at home – these static deficiencies were now normalized!), and they were going to move slowly, and start out by moving my body for me (if I practiced these movements on my own, in ways that were encouraged by my crooked posture, gait, and jarring head movements, I would reinforce improper form and continue to experience dizziness.
I spent the first covid social isolation week holed up with their team trying to reboot my vestibular/balance system (including my gaze stability). Treatment involved aligning my posture, which had become totally imbalanced as my brain lost its sense of self in space (up/down/left/right) and coaching my body to use information from my muscles to supplement the shaky info coming from my eyes (lots of looking while squatting). We worked with games that improved my timing (and were fun!). I could feel immediate difference in my dizziness when left to my own devices in a virtual reality motion environment, and when squatting, lunging, or holding weights.
I am only two weeks post intensive. I do a fifteen minute personalized vestibular-ocular therapy routine three times a day. There will be more to say, but for now, there are some small but tangible changes in my day-to-day experience.
I’m feeling less anxious. My heart rate used to be around 60. At the worst of my symptoms it shot up to 80ish and I could never bring it down with exercise or mindful breathing. Without any conscious trying on my part my heart rate was down 20 points on the fourth day of the intensive and has stayed down. I am crushing my neuro-feedback meditation sessions and my heart rate variability is high – both important concrete indicators for me that my nervous system is functioning differently. I am discovering a new zeal for bottom up interventions that don’t require people to try harder to achieve calm!
I feel more grounded in my body than I have ever been. I actually have an embodied sense of what that word “grounded” means now.
My dizziness in day-to-day tasks is greatly diminished. I am falling asleep without feeling dizzy when I put my head down. I can now sleep on both sides. I’m sleeping more soundly and falling asleep more easily. I’m doing non-digital near tasks with more ease (painting the walls of my house and cooking simple dinners). And most importantly I have a routine to call on when things exacerbate my symptoms. I’ve been on the computer writing this for two hours and have only had to take two breaks to calm my anxiety and reset my eyes. This is huge!
I’m not fully fixed. I still have limits on readings and screens that enforce themselves when symptoms hit. I can walk around the block or ride as passenger in a car, but not without minimal discomfort (it’s still better than it was). I’m not fixed, but I’m also not done healing yet.
I have a new course of treatment that will give me some renewed control over building back my stability over time and I have a team of practitioners that I feel like are really working with me as things change.
And just honestly, for a brain that’s been in social isolation and dizziness since August, I had a blast learning about the science and practice of this new field of study. Dr. Schmoe and Dr. Cooper are kind, good at explaining what’s going on and what they’re going to try without getting locked in science jargon, and they’re just good fun to spend time with. I don’t regret my time there. In fact, I wish I’d gone sooner. In the end they did give me hope that things might be different. How about that? And I think we’re just getting started…
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