Noel Newby

Diagnosis: Other

When I was in school as a child, I cannot recall us normally wearing helmets, and I do recall multiple hits to the head with various balls, including while playing softball and, when I was in the second grade, when my teacher had her class line up at a basketball court when recess ended. The grades 3 through 5 kids started recess when the K through 2 grades ended, and I always ended up directly under the basketball hoop. The big kids kept shooting hoops through the basket with me directly under the basket. Nothing was done about this, and this continued until I finished second grade. No one seemed to have any concern whatsoever for even my dignity. I have no idea how many basketballs kept hitting my head during that entire school year, as no one kept count.

I did not seem to have bad symptoms until I had one final blow during junior high, in about 1984, when I was sitting in a baseball stadium during a minor league game in Las Vegas, Nevada. (There are no major league baseball teams in Las Vegas.) By the time I saw the baseball coming, there was no time to react. It hit on the left side of my head near the temple. I was told that if it hit any nearer the temple, it would have killed me. Someone told me to go see him if I felt any dizziness, but I did not feel any dizziness during the game. During the game I had a horrific headache. The dizziness came later, after the game was over. I can recall no one getting any contact information of the team or the stadium managers in case I had health problems from the accident. Fairly recently when I tried to get such information, it was like trying to find a needle in a haystack.

No one took me to the emergency room shortly after the incident. I canot even recall seeing a doctor about the accident until later, when the symptoms started showing up terribly.

I used to be the captain of a softball team in junior high. Suddenly, I was unable to hit a ball with a bat. Of course, this got me kicked off the team.

I started getting horrible near-daily headaches. A neurologist called them daily headaches.

In high school, I started having brief “black-out” spells where I wouldn’t go down, but briefly everything would go black, especially between classes when a mob of students would go from one class to another. I started getting sensitive to fluorescent lights, and I begged an eye doctor to give me a medical pass to allow me to wear sunglasses to school. He refused.

My first “drop attack,” where I would suddenly collapse with or without vomiting, but not lose consciousness, happened during my senior year in high school in approximately 1989. A psychologist told me that I would likely grow out of those spells, but that did not happen.

The drop attacks and bouts of profound vertigo continued through my repeated attempts at college in Idaho from 1989 to approximately 1998, and I also kept having eye twitching and eye discomfort and fatigue, which doctors kept diagnosing as stress. The problem was, I kept having the eye symptoms no matter how much, or how little, stress I felt.

I moved to Washington state in approximately 1998, and my symptoms went with me wherever I went, of course.

I saw one family-practice physcian with my eye symptoms. He told me to read the Bible book of Psalms for it. When I told him I was seeing him because I could not read without awful symptoms, he told me to listen to them on tape.

One time a family-practice clinic (in around the year 2000) had me undergo a pregnancy test when I presented with terrible vertigo with nausea and occasional vomiting. I kept telling them that I was not doing anything that would put me at a risk of pregnancy, but they insisted. Of course, the test came back as not pregnant. I do not recall anyone at the clinic asking me how long I had those symptoms. I doubt if a roughly sixteen-year pregnancy is humanly possible.

No one asked me at the time, but my triggers were things like: viewing sign language in motion, watching TV or movies, looking at a pinwheen spinning, looking at the pages of a book turning when I read books, seeing traffic going by if it was more than about three cars at a time, riding moving vehicles, plaid and plaid-like patterns (but not checkboards), being in rocking chairs, being on a swingset, large stores filled with rows of shelves, shopping carts, and people milling about, and patterns of light and dark such as shadows and lights through trees and lights and shadows coming through a wooden bridge.

Prior to the baseball-stadium accident, I could ride rollercoasters without any problems. I remember having a wonderful time at Six Flags and Disneyland before my vertigo started.

One time, in 2003, I was in the checkout lane at a local Target store when I had a drop attack. I now know that my triggers were the large size of the store and all of the various visual stimuli occuring simultaneously. I declined the offer of an ambulance, having had years of experience with the drop attacks, but I did go to the emergency room shortly thereafter when a family-practice clinic insisted that I go.

The emergency room ran EKG, EEG, lab tests, and other tests which all returned normal results, and they diagnosed it as “probable benign syncope” and discharged me with “reassurance,” telling me that I had just had a stressful day, and we all have “those days.” I can recall no one at the emergency department ever asking me how long I had been having those episodes.

From the time of the stadium accident until currently, I cannot recall a doctor, nurse, or intake form ever asking me if I had ever had a significant blow to the head and, if so, when.

I was first diagnosed with Convergence Insufficiency in 2002. I attempted vision therapy in roughly 2005, but at that time there was no vision therapy in my county, and I kept having drop attacks while riding public transportation buses. After only one in-office session, I felt compelled to quit due to this difficulty with transportation. I felt I had no choice but to wait for vision therapy to finally become available in my county.

I was first accepted by the Washington State Department of Services for the Blind (DSB) in 2005, but I was removed from their Vocational Rehabilitation program shortly thereafter due to the drop attacks and bouts of sudden profound vertigo. I was then transferred to their Independent Living program, where I was given only six cane tips and a lighted, handheld magnifying glass. The DSB did not provide me with cane travel instruction, Braille instruction, independent living instruction, any blindness technology other than what I just mentioned, or anything else, from 2005 until 2010 when I re-applied. I was left in utter desperation, mostly to fend for myself.

An opthalmologist kept giving me increasingly stronger prism-lensed glasses, as my Convergence Insufficiency kept only finding temporary help from the glasses. It seemed like I was getting stronger glasses every six months, and I kept having the dropped attacks and vertigo regardless of what glasses I wore. The opthalmologist claimed that I did much better with the glasses, but the truth is otherwise.

I also had some apparent then-undiagnosed Chronic Dry Eye Disease on top of the other problems, which added to my headaches and misery. And, I had a myriad of other then-undiagnosed conditions which I will discuss later in this writing. The Chronic Dry Eye Disease is relevant because of what I am about to write.

I once called a family practice clinic (the same one with the doctor who told me to read the Psalms for my vision problems) after hours, speaking with on-call physicians, because of excruciating eye pain, headaches, and profound vertigo. They kept telling me to just lie down and wait for the migraine drugs to work, and kept telling me to “calm down” and just wait it out. That simply did not work at all, no matter how calm I was. The pain, dizziness, and nausea were absolutely horrible. I soon ended up in the local hospital’s emergency department crying in extreme pain and very dizzy. The emergency room staff talked with the doctors of the family-practice clinic, and kept trying to convince me to allow them to admit me to the hospital psychiatric ward. I kept arguing with them about how and why I was not being “mental,” and how a stay in the psychiatric clinic would have done me no good. Come to find out later, I was completely correct.

After such terrible experiences with the hospital emergency department, I learned to not go there after drop attacks, and to not go there if I feel especially bad, because the more often I would show up, the more my symptoms would get misdiagnosed as psychiatric, migraine, or both. I taught myself various techniques to “deal with it all” on my own, such as finding a chair to sit in when I felt I was going to have a drop attack, and pretending to feel fine when I was not, and continually politely yet firmly declining all offers of an ambulance even if I had just vomited on myself while riding a bus and had to be carried off by two people because I was too dizzy to stand.

I was referred to a headache specialist from 2006 to about 2012, and she called all of my symptoms a combination of migraine and migraine associated vertigo, even the symptoms that were found, with Google searches and whatnot, to be a part of Chronic Dry Eye Disease and Convergence Insufficiency. The specialist did not seem to be at all aware that I had been a client of the Department of Services for the Blind, and I do not recall that clinic ever providing accommodations for my vision impairment (yet, she would give me Imitrex and other drugs for the symptoms of my over-used poor vision). Also, the fact that I had then-undiagnosed memory impairments and Central Auditory Processing Disorder did not appear to be on their radar. I ended up quitting the specialist once I had enough improvement with eventual vision therapy to warrant my no longer seeing her. Plus, the fact that for several years I kept feeling unwell during the long transportation to her clinic and back, was an added incentive for me to eventually quit. My drop attacks stopped in 2009, thanks to medication, but the vertigo persisted.

The headache specialist told me that there are some things I would just have to learn to live with.

I started vision therapy in my county in 2010, within about three months of a clinic finally opening. At first, I had an extreme difficulty just going there and back, and kept having to get off the bus to wait for the spinning to end, and getting on another bus to finish the journey. This took me much longer to get to and from the appointments, but at least I did not risk being stranded out of county because I missed a Greyhound Bus due to sudden profound vertigo or a drop attack.

For the first few weeks or so, I had to have a bucket or garbage pail nearby in case I vomited. I would get vertigo, and wait for it to end before continuing with the exercises. Gradually, I found improvements in my ability to read and write in print without getting profound vertigo, and even the vertigo itself started decreasing in intensity and frequency. I finished the in-office vision therapy in 2011, but continued with the at-home software version in about 2012. The postponement was partly due to the availability of the software and partly because my insurance did not cover its cost. The visual vertigo finally ended in about 2013. I now have some residual vertigo that comes and goes that does not appear to be visual, but my ear-nose-throat doctor said it’s in my brain and not my ears although my neurologist recently said it’s not my brain but my eyes and ears. It doesn’t appear to be related to headache, because I don’t get very many of those now, partly due to an improvement in my vision and partly due to treatment for Chronic Dry Eye Disease that finally got diagnosed in approximately 2013. (When I was first diagnosed, as soon as I opened my eyes my tears would be instantly evaporated.) Whatever it is, I am currently trying to treat it with a combination of a very certified-organic diet that consists of mostly fresh produce smoothies, spinach salads, and some chicken breast, eggs, and dairy, with exercise and lifting my at-home dumbbells when I am well enough to do so.

I was diagnosed with short-term and working-memory deficits in 2013, Central Auditory Processing Disorder between the two brain hemispheres in 2014, and various visual and combination visual-auditory perceptual and processing deficits later in 2014, all likely secondary to the stadium accident, or possibly both it and the previous many ball hits to the head.

I have not yet mentioned some of the “special treatment” I have received because of my history of profound vertigo. As follows are just some examples among many others.

The DSB accepted me as a client in 2005 but left then left me with just the aforementioned items. This meant I went to a blind school to learn Braille, and I learned some cane travel from a then uncertified blind volunteer. I ended up quitting working with her due to personality and religious conflicts, and ended up self-teaching the remainder of it. I ended up being dependent on other people, including abusers, for help.

I was accepted again by the DSB in 2010 after the drop attacks finally ended, but during that time, I was stuck waiting for them to get me various tests that they ordered. They gave me no assistance whatsover while I was waiting for many months for tests that never happened, but they did give me one free day trip to their Orientation and Training Center and back.

When the DSB did not teach me Braille in 2005, I was accepted by a blind school, but the school eventually told me to withdraw from all classes and to come back when I did not have “so many issues.” I had “too many issues” preventing me from submitting my work on time, and one of those “issues” was frequent vertigo. I was left scrambling to find a way to fix my vertigo so I could return.

I was a client of the local deaf center in 2005 due to a doctor’s letter that stated that my vision and auditory functional problems were from “vestibular migraine and PTSD (Post-Traumatic Stress Disorder)” (when they were actually found later to be from Convergence Insufficiency and Central Auditory Processing Disorder), but my bouts of profound vertigo caused their executive director to give me the advice that, for an hour a day, I should go out in public and say nothing about how sick I was, no matter how sick I was, and he reminded me that “everyone gets sick.” He seemed to be fairly unconcerned that his wearing plaid shirts, and the sign language and text relay at their clinic, was causing me profound vertigo, and that I had had drop attacks at seemingly random times and was therefore at a high risk of having one in his clinic. (It was only by sheer luck that I did not have a drop attack with vomiting while there.)

I started filing complaints against the clinic because of this advice and apparent lack of concern, which eventualy led to an inter-agency meeting in 2012, where they wrote I “chose” a certain agency to basically be the answer to my prayers, when really that agency was woefully inadequate.

Those who put together the meeting never asked me what my veritgo triggers were, or how to best accommodate my then-diagnosed disabiities, and their various accommodations of real-time captioning and multiple ASL and deaf-blind interpreters triggered such profound vertigo that I lay my head on the table in front of me and stayed like that with my eyes shut during the remainder of the meeting. Again, no apparent concern was ever shown for my welfare, especially given my history of drop attacks, and I left the meeting with profound vertigo and had to fend for myself to get a ride home. I was unsafe to take public transportation, and thankfully I do not drive a car. I found a nearby place to sit, near a nursing home, and left an urgent voicemail with my neurologist. A nursing home overheard me say “vertigo,” and gave me a ride home.

At that time, although the vertigo was much improved, I was unable to tolerate a two-hour meeting of nonstop high amounts of visual stimulus simultaneously without getting profound vertigo.

The deaf center and their affiliates still refuse to speak with me or my mediator to this day; all attempts at mediation and facilitation have failed. They refuse to even have a meeting to discuss what is now known about my diagnoses. I am, essentially, banned for life even though I can find nothing in the inter-agency report that states that I am banned or that any of the agencies refuse to serve me. It has been about three years since the meeting, and the ban is still effectively in place at the time of this writing.

My finanical aid is, according to a local college, “permanently ruined.” I kept getting on college institutional and financial-aid probation because of its impact on my grades.

I am now self-instructing in some things that I would otherwise study in college.

I taught myself sign language because formal ASL classes made me profoundly dizzy, and no one would teach me it. I now sometimes use the sign language that I know to cope with my Central Auditory Processing Disorder.

I am on disability checks and am in low-income housing. If the doctors would have “got it all right” years ago, I would probably have a good college degree and be earning a decent income.

Loss of friends and aquaintances, boyfriends, and a fiance.

Lots and lots of shunning and rumors about me supposedly “faking my blindness,” even in the apartment building where I live. Some of the shunning is continuing at the time of this writing.

I would get some help from volunteers for things like housecleaning when I had profound vertigo, but I kept being labeled a “complainer” when the volunteers kept triggering profound vertigo, and put on months-long (or longer) waiting lists, or being denied help completely, leaving me to fend for myself.

Numerous threats of eviction because of the impact of the profound vertigo, and the various consequences, interfering with my ability to maintain my housing.

Other “special treatment” I probably failed to mention.