I remember the first day Reagan was dizzy. November 1, 2007.
October of 2007 had been spent trying to cope with the loud ringing in his left ear. We tried steroids, even a steroid injection directly into his ear. Now that I understand the interaction between steroids and fungus, I would refuse. But fungus was far from our thoughts. November 1st was a Friday. He was headed to school late, as usual. He begged me to turn around. “I’m dizzy.” He grasped at his head. “I think I need to throw up.” His tone of voice had changed. No longer quiet and reserved, there was an urgency and desperation to his voice.
I turned around on Deer Creek Road. Little did I know I was turning around from life as we once knew it. He would not return to 6th grade. Or 7th grade. Or 8th grade.
I didn’t connect the day with Halloween until months later. In retrospect, I feel sure the high amounts of sugar served as a trigger for the mold poisoning to go to the next level.
Two nights later the dizziness turned into massive vertigo and vomiting. All night long. I can’t describe the horror of watching your precious 11-year-old child wretch in agony for hours on end.
I had been sensing the need for a second opinion. The vertigo pushed me to take action. I grabbed an appointment with an ENT doctor at Children’s Hospital in Denver for Wednesday. “If we can just get into the hospital maybe they’ll send us to someone more qualified to help,” I reasoned.
Sure enough, the ENT took one look at him, saw the nystagmus (involuntary eye movements) and his pale color, and admitted him to the Emergency Room for observation. I asked for the specialists I had studied on the Internet. Each one saw him. Each one shook their head. They were baffled. They offered to do an exploratory surgery on his ear. There was no real reason to go exploring, so they sent us home.
The car ride home was an hour long. I called my mom. I remember sobbing these words, “I’m afraid to take him home.” I just didn’t know the real reason why.
Sure enough, we got home and the attacks began again. Attacks with underlying dizziness 24 hours a day. Our neurotologist, believing it to be Meniere’s Disease, offered to perform surgery to place a shunt behind the ear to drain what he believed was excess fluid. In desperation we agreed.
We agreed to two more surgeries after that. Meniere’s Disease seemed like a reasonable diagnosis to us. Ear ringing and vertigo are classic signs. I didn’t know to consider poisoning. Last fall, researchers in a pathology lab at Harvard University were hospitalized after drinking tainted coffee. Their symptoms? Ear ringing and dizziness.
Reagan recovered well from the shunt surgery. We began rehab to restore his balance. He still had an underlying level of dizziness, but didn’t have a major vertigo attack with vomiting until Thanksgiving day. We started to carry him after that. Walking was too difficult. We took the next step for treatment of Meniere’s Disease. Surgery injecting the toxic drug Gentamiacin into his left ear. The goal would be to kill the 8th nerve and thereby eliminate any chance for vertigo. Again, our desperation dictated our decision. No questions asked.
He learned to walk again in an adult rehab wing of the hospital. He was still struggling to fall asleep. The Gentamiacin seemed to make the chronic dizziness worse. I read much later that increased dizziness is a common side effect. The doctor prescribed Valium. Reagan had used Valium off and on as we tried to help him fall asleep. It didn’t really help. We were just so anxious to relieve his suffering.
The 4th day in the hospital I decided it was time to take him off the Valium. I told him it would be better to stay up all night together than depend on a drug that only made him drowsy and hindered his ability to walk. It was tough to get him off. It took a few nights of tears till 2 in the morning before he learned to sleep on his own. He was still dizzy. Still crying at night. But at least he was off Valium. The day after the withdrawal he learned to walk. Not a coincidence, in my mind.
Upon our return home his dizziness worsened yet again. The rehab doctor called to check on Reagan. “Perhaps he needs a psychologist,” he counseled. Instead, we tried another Gentamiacin injection. One week before Christmas.
Christmas morning Reagan was no better. In fact, his level of dizziness had increased. We waited to open presents as we watched him bang his head into the couch, sobbing. His dream of restored health by Christmas had died.
I joined a Meniere’s Disease forum. I asked if there were any other 11-year-olds out there with the illness. I received a phone call the day after Christmas. A mom from Michigan whose son was diagnosed at age 9. It was 7 years prior and he was doing well. I felt encouraged, but my spirits soon dropped as she described his symptoms. Vertigo attacks similar to Reagan but no dizziness in between. She was shocked to hear about Reagan. Something seemed very very wrong.
I called our neurotologist the next day to report Reagan’s lack of progress. His response marked the first of many I would receive from medical experts.
“He needs tough love. Tell him I want him to get up and get moving.” And then the dagger in my heart, “He was fine in the hospital.” The first of many intimations from a variety of medical experts that I was the problem. The truth behind his reference to the health of our home was hidden to him and to me.
I contacted the Cleveland Clinic. I found a doctor who seemed to know more than most about pediatric ear disease. I had no reason to believe Reagan’s ear was not the problem. The doctor recommended a neurotologist in Denver. It took two weeks to get an appointment.
“I want to leave him alone for 4 weeks,” the doctor prescribed. Four weeks of watching my son dig his nails into my arm each night as he tried desperately to transition into a world of unconsciousness, his only break from the dizziness that kept him clinging to video games and puzzles. Anything to distract his mind.
I called the new doctor during those 4 weeks. Told him the dizziness wasn’t letting up. The next dagger.
“Don’t make his dizziness about you.”
I continued to search for answers. If Meniere’s Disease did not include chronic dizziness, then what was wrong with my son? I contacted a vestibular specialist in Michigan.
“I think a vestibular disorder has been created on top of an existing vestibular disorder,” she surmised. She contacted the head of the vestibular department at the Mayo Clinic, who in turn contacted me. “Does he have chronic dizziness with periods of extreme dizziness? Almost like an attack?” “Yes,” I said. Almost shouted. The first person who wasn’t shocked. Who, in fact, described my son.
“I suspect he has a vestibular migrainal issue,” the doctor concluded. He suggested, “Watch for trigger foods like chocolate, artificial sweetener, and MSG, and follow up with a pediatric neurologist.”
During those weeks and months Reagan learned to survive by listening to books on CD, working on puzzles, and playing video games. Zofran no longer worked for the nausea. We used Phenergan suppositories. The toughest part of his day? Falling asleep. It took until 2:00 am most nights. I learned that I could sleep on his floor at 11:00 for a couple of hours. Reagan would wake me so that I could hold him just right and massage his forehead in just the right place until he finally fell asleep.
One night he woke me up, just like always, and told me that he thought of writing himself a letter.
“What would it say?” I groggily asked.
He answered softly,
“It would say, ‘Dear Reagan,
This had to happen to somebody. And you’re the best one for it.'”
Still unaware of any connection with his environment, and still confident that the medical world would provide an answer for us, I took him back to a neurologist. Again, doubt was expressed that any child can be chronically dizzy. This young resident had no interest in my other children’s illnesses and quickly suggested a counselor. He agreed to prescribe an anti-seizure medicine commonly used for migrainous vertigo, but made it clear that Reagan and/or I was the problem.
That appointment was in April. Reagan had been dizzy for 4 months. Two of our other children were out of school and one was coming home frequently. It’s hard to believe that it all seemed coincidental. Hard to believe we would keep trying surgeries and drugs when we were slowly being poisoned by toxic mold. Hard to believe unless you’re the one living it.
Our story soon unfolded as documented in our timeline, and we began our journey of recovery.
Reagan’s dizziness has become part of his life. He used to wear sunglasses in the house. He doesn’t anymore. He still struggles to fall asleep and struggles to open his eyes each morning, but he rides his bike, lifts weights, and dreams of joining the CIA.
He continues to de-tox. We see “stuff” come out of his ear frequently. Lots of rashes appear and then disappear. We’re learning what he can tolerate food-wise. One theory that captured my attention recently comes from environmental physician Dr. Allan Lieberman.
“Most physicians will evaluate a patient with acute onset of tinnitus (ear ringing) and vertigo (dizziness) with a thorough neurological evaluation, including brain MRI to rule out uncommon but serious diseases of the brain. Although ear ringing and dizziness can be associated with serious central nervous system disease, the majority of cases are more transient and neurological evaluation fails to uncover any overt disease process.
This is true of most cases that we see at The Center. A comprehensive Occupational and Environmental Medicine evaluation is usually able to identify the illusive causes. We find that exposures to common airborne, food, or chemical triggers very often sets off the ear ringing and/or dizziness in these patients. One of the many causes of these problems is the Herpes simplex virus, which literally lives in the cranial nerves of the brain. When the body’s defenses are weakened by any stress, including allergy, the virus can activate, resulting in the onset of symptoms.”
This caught my attention, because last December Reagan’s IgG for Human Herpes Virus, HHV6, was 1:640. The normal range is less than 1:20.
A severe mold exposure causes dormant viruses to become active. The interior terrain becomes a breeding ground for all sorts of viruses, fungi, and bacteria. Toxic mold and its contaminants cause an array of illnesses, and Reagan is living proof.
I’m confident we’ll get our answers and Reagan will thrive one day. He may have a “limp,” but I have no doubt that great things are in store for him. After all, this had to happen to somebody, and he’s the best one for it.
I too have had chronic ringing in the ears for many, many years. It started when I was 20. It was a struggle to learn to live with it that first year. I still hate it, but it doesn’t stop me from living my life. I’ve also been to the ENT, had MRI, etc all with “normal” results. The ringing is a different frequency and intensity for each ear. I also have hyperaccussis in one ear – where I am sensitive to everyday normal sounds..I get an echo effect in my ear after each sound. After every audible sound, I experience a copycat ocean- wave -crashing-like echo in that ear. Like a call and response. Tinnitus is a mysterious condition. So many things might cause it, its needle in the haystack. I did grind my teeth throughout my teens and 20s (to a lesser extent I still do at night). TMJ can cause tinnitus. Low thyroid can cause it. Any problems with the jaw or neck. I do believe there is a physical structural component in my case, because I noticed when I do a full yawn (fully stretching the musculature in the mouth, sinus, jaws) the pitch and loudess of the ringing increases, especially in the hyperaccussis senstive ear. I hope you can narrow down the cause in your son’s case, and successfully cure it. Keep us posted!
Andrea Fabry says
There are so many potential triggers for something like this – sometimes we accept the mystery and move forward as best we can. It sounds like that’s what you’re doing!