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“The world turns on a tilted axis just doing the best it can” –Roy Mustang

Introduction

In this article I describe a peculiar health condition I have had for the past six years. Since this infirmity has remained unidentifiable to date, I will refer to it as Earth Axis Syndrome, a rare health condition best characterized as tilted and spinning.

The purpose of this article is to raise awareness. Hopefully, someone comes along with a clue as to what is wrong with me. If you have any knowledge to share, or know of someone with the same condition, please contact me.

Major Symptoms

• Tilted vision
• Sensation of leaning, falling
• Nausea
• Anxiety
• Sensitivity to movement, sight, and sound

Background

My health problems began Christmas morning, 2006, a few days short of my 22nd birthday. I awoke to a bedroom spinning rapidly clockwise out of control. I spent the next five days awake, constantly spinning, vomiting, and highly anxious. The common diagnosis for these symptoms is vertigo. Vertigo is often caused by either crystals in an inner ear being out of place, or by a virus. The treatment for the former is a series of special head maneuvers performed by a doctor to properly reposition the crystals within the ear, while the latter requires waiting it out. The head maneuvers didn’t help me, so the thought was I had a virus and simply needed to toughen it out until it went away. By the time winter break was over and my next term of college was beginning, my balance still felt off, but I was able to go back to school and finish my last semester of undergraduate studies.

About two months after the initial vertigo, I noticed some strange issues with my vision and balance. My entire field of vision was slanted from up-left to down-right about 5-10 degrees. Not only did I see this slant, I felt it too. Like I was constantly leaning in that direction, that my left foot was always on higher ground than my right. Over time I may be able to get used to viewing tilted, but it’s just not possible to adapt to feeling tilted.

On top of the slanted vision, I was also perceiving stationary objects as slightly moving/jiggling around. As one can imagine, these symptoms make something as simple as walking a major challenge, let alone going to school or work. Nevertheless, I finished my undergraduate program, interned out of state as a software enginner for the summer, and came back to complete two years of graduate school. The computer science master’s program was literally a 24/7 endeavor with an overwhelming amount of projects and research. The harder I pushed, the more my health suffered. By the last semester of grad school, my body was a wreck.

I wanted the master’s degree so bad that I pushed through my ailments and finished the program. Shortly after though, before I could start full time employment, my body said “game over”. From August 2009, I spent the next six months bedridden. My sense of balance was practically gone. I couldn’t turn or tilt my head. Just walking to the bathroom felt impossible. I had to hold onto a family member’s shoulder and press against walls to take a few steps. I could do nothing during that period in my life. No working, no interacting, no computing, no reading, … no to anything normal. Just lie in bed, watch TV, try not to puke, and struggle to get sleep whenever possible.

Following those six months of being useless, I began doing little things like using a laptop and playing video games for short periods. I still spent practically all day in bed. It wasn’t until late 2011 when I started visiting a chiropractor that I slowly started introducing normal activities back into my life. I’m now at the point where I can turn and tilt my head, walk without holding onto things, surf the Internet on my laptop, program for short periods, play video games, talk with my family for parts of the day, spend long periods of time out of bed, and go to sleep at night on a regular schedule. The latest step has been going on car rides and walking around stores. Still, many of the normal parts of life like working, hanging out with friends, driving, and sports are far out of reach. Above all else, my major symptoms like tilted vision, poor balance, nausea, and high anxiety are as present as ever.

Basics of Balance

A person’s balance is the result of the brain processing signals from three inputs: ears, eyes, and touch. The inner ears act as the body’s gyroscope and are often the primary suspect in balance disorders. Sight is used to help the body relate its position to its surroundings. Touch sensations, like those from the bottom of feet, also help the brain understand the body’s position.

Triggers

Although my symptoms are constant, there are some things which trigger them to get worse.

Movement

Any sudden or quick movements make me sick. Turning or tilting must also be done slowly. Car rides are tough, but I try my best to push myself to go on as many as possible. I have to sit in the front passenger seat when in a car.

Communication

Not just talking. Any form of communication seems to make my symptoms worse, including silent communication like instant messaging on a computer or phone.

Sight

I like my environment to be stationary and well lit so that my eyes can help with balance. Moving objects like ceiling fans are hazardous. I keep my TV on all night (muted) to keep the room slightly illuminated.

Sound

I’m very sensitive to sound. Too loud or too many sources causes my symptoms to get worse. Coincidentally, my hearing seems to be stronger. I can listen to a phone conversation behind a closed door on the other side of the house.

Work

If I try to program during the day, I definitely pay for it at night. I can no longer sit at a desk, but I can use a laptop on my lap for short periods.

Time

I’m at my best during the morning and afternoon. Every night, usually around 7pm, my body gets much worse. By 8pm I do my best not to even talk. All of my triggers are more sensitive at night. I have a routine every night of relaxing in bed watching anime for a few hours to help ease into lying down and going to sleep.

An Unknown Enemy

I have seen many doctors in many fields. Ears, eyes, brain, spine… every kind of doctor that could possibly be related to balance disorders, I’ve seen them. I even got to visit with Dr. David Zee, considered by many as the world’s top expert in balance disorders, at Johns Hopkins Medical. I have had so many tests, scans, treatments, therapies, and medicines that I couldn’t possibly remember half of them. The one constant among all these different doctors: no one can figure out what is causing my problems. On paper I look healthy. Blood work, MRI scans, CAT scans, etc. are normal. My eyes and ears seem healthy. I occasionally get Tinnitus (ringing) in either ear, but it only lasts a short while. I have no hearing loss; if anything, my hearing is stronger than before.

My symptoms are weird even to those that specialize in the weird. This is one of my bigger issues, fighting an unknown enemy. There are no known rules for what I have. No “you should be doing this” or “you should avoid this”. I’m always thinking “Will I fall back into worse condition?” “Should I do this, try that?” Even when someone asks me what is wrong, I can’t tell them “I have xyz” since what I have has no name. The result is a heavy dose of anxiety and isolation.

Another hard concept to understand is that my symptoms are constant. The best way to understand this is to think back to the last time you caught a cold. Your whole body has that weak hurty feeling, you’re coughing, your nose is so stuffed that you can’t taste your food, and you feel chilly from the fever. During this time you can’t help but continually notice how bad you feel. Luckily these feelings only last for a few days, then they go away and you forget about them. What I have is like all those cold symptoms never going away. Not for an instant. You have it as you go to sleep, and it’s there when you wake up, hopefully not worse. It does not become normal to you no matter how much time pasts. You are always aware that you are sick. There’s also no cough drop or Advil for this.

What It Isn’t

The following conditions have been tested and ruled out (not a complete list, I have to read through my records):

• Lyme disease
• Meniere’s disease
• Stroke
• Multiple Sclerosis (MS)
• Labyrinthine fistula
• Parkinson’s disease

Tried Treatments

• Medicine
• Azithromycin
• Bonine
• Transderm Scop
• Diazepam
• Baclofen
• Methazolamide
• Acetazolamide
• Ginger
• Physical therapy
• Neck brace
• Surgery in right inner ear
• Chiropractic adjustments

None of the medicines had any positive effect on my balance. Most had at least one bad side effect. I am currently taking Lexapro and Xanax to help with anxiety, and Promethazine to help with nausea. I want to wean off of these meds as much as possible.

Physical therapy consisted mostly of daily balance exercises. Florida Hospital referred to it as “vestibular rehab”. These exercises include things like turning my head 90 degrees before turning my body, walking in a straight line with head turned one way then the other, and walking in a straight line with eyes closed. The most difficult of the exercises was standing barefoot on a thick pillow, arms crossed my chest, eyes closed, and shaking my head for 30 seconds. This is difficult even for people with normal balance. The idea of these exercises was to push my balance to the extreme so that I could acclimate to my condition. I think they helped me a little but not much.

Dr. William Lu asked me to wear a neck brace each day. I don’t remember the reasoning, but if the neck brace had an effect on my balance, then that would mean he should perform some sort of neck surgery on me. The brace didn’t help at all so I stopped seeing him.

Dr. James Atkins believed my problems were caused by a supposed labyrinthine fistula (i.e. a hole) in my right inner ear. A fistula repair involves going under anesthesia, prodding into the ear in question, and cutting material from one area to patch the hole. I was told that I would feel immediately better following the surgery, that all my symptoms would disappear. This, of course, was a total pack of lies. Dr. Atkins reached his conclusion to perform surgery on me based on ruling out all other treatments known to him. The flaw in this logic is assuming that a doctor, or any person, knows everything. Not only did I not improve from the surgery, it left me with a sensation of fullness in my right ear that will probably never go away. When I catch a cold, I can’t blow my nose hard anymore because it feels like my ear will burst.

The latest treatment I tried was visiting a chiropractor. Dr. Michael Hill believes my symptoms may be caused by subluxation of the spine leading to reduced flow to my brain. He also wanted to help my head become straight. His treatment was a combination of two-to-three times weekly chiropractic adjustments and daily balance exercises. When I first started visiting him, I was still in a bedridden state, too afraid to turn my head even an inch. After seeing him for over a year, I am able to turn and tilt my head, walk around, and bend/reach down. My symptoms have not improved and my head is still tilted, but I am more physically able than I was prior to meeting him. He is a wonderful doctor and person who went above and beyond to help me. I recommend him highly to anyone seeking medical care.

I want to mention another amazing doctor, my neurologist Dr. Arnaldo Isa. Day one when I met him he told me he flat out that he had no idea what was wrong with me and would not be able to cure my symptoms; however, he does want to do everything in his power to improve my day to day life. I visit with him every few months to catch up and get feedback. Like Dr. Hill, Dr. Isa is the kind of caring doctor that is far too rare these days.

Weirder than Weird

Here’s some of the more… interesting things I’ve noticed with Earth Axis Syndrome.

• My head is tilted in the direction of my tilted vision. Even visiting a chiropractor for over a year could not change this much. I think constantly tilted vision makes my head want to move to a similar position.
• The direction of tilt is always the same. Tilting my head or looking through prism lenses do not change the tilt. If I stand in the middle of a room and look at the four walls in turn, each is slanted the same, creating an odd 3D shape that can only be described using calculus.
• You know those horror movies where the character looks down a hallway and it appears to be stretching further and further away? I get that same effect when stopped at a red light in a car.
• Although the direction of tilt is constant, the angle of tilt varies slightly with distance. An example of when this is really noticeable is while walking down a narrow hallway. The stationary corridor is transformed into a slowly spinning tunnel. Similarly, while walking outside, the whole world in front of me appears to be rotating as I move forward. It’s quite an impossible sight to behold, as well as scary and unnerving.
• Although I am not actively spinning right now, I feel like a toy top that’s been wound between someone’s fingers just waiting for a flick. At any moment I can start spinning or feel like I’m falling for an instant.
• Glasses have a fisheye lens effect on me. The stronger the prescription, the more pronounced the effect. I do not have this problem with contacts though. I wear contacts all day and only wear glasses right before going to sleep. The glasses have a weaker prescription than I need, but loss of clarity is better than curved periphery.

Thank You

Thank you so much for taking the time to read about my condition. If you or someone you know has any knowledge or ideas about my condition, please contact me. Also, please feel free to share this story with others. The more people that know about this, the better the chance of finding useful information.

The story continues in the following article, Possible Diagnosis: Utricular Dysfunction.

Written by: Andrew Mantel. March 8, 2013.