By Trish Aquino
“All your tests are normal.”
If everything is so “normal,” why do I feel so bad? Is this all in my head? Am I making it up? Am I just lazy? Am I crazy?
As long as I can remember, I suffered from insomnia. And I mean really bad insomnia. Before my dad died when I was five and a half years old, I clearly remember lying awake at night, unable to sleep, listening to my parents chatting in the living room. I dreaded going to bed at night, even at that young age, because I knew I wouldn’t sleep. I knew that that horrible internal vibrating would take over and sleep would not come.
As a child I suffered from constant headaches, with neck and upper back stiffness and pain. I had stomach aches, chronic constipation, and chronic sinusitis and bronchitis. Swallowing was always difficult and was accompanied by TMD, the aforementioned insomnia, anxiety and panic attacks.
I complained constantly to my mom who told me I was just a hypochondriac and was making things worse than they really were. And when I ended up annually at the doctor’s office having a battery of tests run, all of which were always ‘normal,’ the doctor echoed my mother’s beliefs, making me feel more isolated and alien than ever.
I was twenty-two years old when I also began having one bladder infection after another which ultimately lead to the diagnosis of IC (interstitial cystitis) and I received my first diagnosis of IBS. The internist told me it was the worst case he’d seen in his twenty-five years of practice and referred me to a psychotherapist.
This began my conscious journey of trying to heal myself. I loved psychotherapy and I loved learning. I’ve always been interested in why we say and do the things we do and I believed that the more I knew, the more I could help myself and help others. Once I found myself repeating the same stories, I knew it was time to move on. Therapy had given me tools and a deeper understanding of human nature, but the insomnia and other symptoms continued.
I did Rolfing, myofascial release, and other forms of very painful body work. I tried Reiki and acupuncture, sound and color healing as well as transformational breathing and chiropractic adjustments. When none of this worked, I went on to theta brainwave healing, Native American healing, essential oils, NLP (Neuro-Linguistic Programming) and hypnotherapy, even studying and becoming a certified clinical hypnotherapist myself. I was determined I was going to find answers.
Sadly, while I had accrued invaluable information, tools, and resources, and had actually helped many other people, I was still suffering as the insomnia continued, evening worsening with many of the therapies I had undergone and I found myself withdrawing.
I was referred to a renowned neuropsychiatrist who told me within the first five minutes of our appointment that no one would ever guess the pain I lived with every day. He was so kind and understanding and he gave me such hope! He did a brain study and saw that my brain wouldn’t go into delta for more than two to four minutes at a time and he told me I was born with an abnormal brain. He thought I had ADD and began me on treatment but everything worsened and my weight dropped so significantly (I was not overweight to begin with) that he thought I had celiac disease. He became so alarmed he went back and reviewed my original brain study and told me he had missed something and had made me worse. He said I needed a calming antidepressant and started me on the lowest dose of Celexa then had me cut it in half with a pill cutter. Within twenty minutes I began shaking terribly and could feel my core was beginning to convulse so he had me take a Xanax. When that calmed me down, he switched me to Lexapro but I had the same reaction. This was over the course of two days and it took me two full weeks for my core to stabilize and for any kind of appetite to return. I stopped seeing him soon after.
I was really tired of being judged by family, by friends, by the doctors and practitioners whose help I sought. There were several doctors who really thought they knew what was going on and that I would be an easy fix. When they turned out to be mistaken, they often had no idea what to do with me nor how to complete the relationship and did so badly. This only fed my incredibly negative beliefs about myself and I began to feel hopeless.
I was in my forties, losing friends and losing faith, when I found craniosacral therapy.
The therapist seemed to understand my symptoms and explained that I had a high, narrow palate which could be treated by a dentist with a palate expander called an ALF. I was with an ALF dentist the next week.
He told me how people with high, narrow palates have restricted airways, and how the ALF would correct that and I would be breathing and sleeping well soon, but that was not my experience. After ten years with a lower device and a night guard then three years with the ALF, my teeth were so flared that I had excessive gum recession, exposed nerves and bone, and ended up losing a molar.
In the end the ALF had expanded my palate a mere 1.82mm but had flared my teeth 7.15mm and left me with periodontal damage and the need for restorative work.
On a brighter note, this experience led me to a myofunctional therapist, who immediately recognized my tongue-ties and referred me to Dr. Soroush Zaghi. During the frenuloplasty he made a cut that released my neck and skull.
As long as I can remember I have had very limited range of motion in my neck and head. This pain, tension, and significant tightness was actually something I felt internally from my skull all the way to my toes. I felt as if my internal body was constantly tense, girding itself against something that threatened my very existence. I now understand it actually was protecting me against the chronic waves of adrenaline that flooded my body every few minutes throughout the day, every day; leaving me shaking, my heart and pulse racing, and bewildered by what was happening in my body. Adrenaline is corrosive and it was battering my internal organs, slowly eroding my energy and my health.
Today we are hearing more and more about something called fascia. It is a flexible, fibrous sheath with multiple layers that holds our muscles on our bones and our internal organs together. Fascia was historically referred to by doctors and surgeons as connective tissue that holds everything together but that was all. This biological fabric is actually a sensory organ that literally communicates to our central nervous system about whatever it is covering. It permeates every muscle, nerve, bone, tendon, and vein, as well as holding emotions. And with emotional and/or physical trauma it loses its flexibility and hardens, like compression wear tightening, restricting movement and causing pain.
Along this interconnected highway is a fascial chain called the deep front line. One continuous link that begins at the floor of the mouth and tongue and travels down through the interior throat, the entire chest and diaphragm, lumbar, psoas, hips, thighs, calf muscles, all the way down to the feet and toes!
So, when Dr. Zaghi made that deep cut, I felt a release, along with a deep sense of relief as it traveled down through my chest and gut, the muscles letting go in a way I had never experienced, all the way into my legs and feet. I felt that inner holding and tension of a lifetime simply let go. My head was as weightless as a helium balloon and I had never felt that light or that free before and I began laughing and crying simultaneously.
While my tongue-tie release was a success, my sleep did not improve and I continued to have symptoms so Dr. Zaghi suggested we do a cone beam CT scan to rule out any maxillofacial structural issues. When analyzing CT of the head and neck, we expect the posterior airway space to be approximately 10-15mm wide to ensure low risk for symptoms of sleep disordered breathing. However, looking at my CT scan, Dr. Zaghi discovered that my posterior airway was only 1-2mm wide. In that moment, it all became clear. He told me there was no way I would ever have been able to sleep well and that I never would unless this was corrected surgically. No palate expansion device was going to work.
Dr. Zaghi suggested I do an at-home sleep study so that we could get a clear look at what was going on when I slept. We found that my RDI was 23.7 and much higher than my AHI of 15.6. RDI stands for Respiratory Disturbance Index which indicates how many times arousals and disturbances occur due to lack of oxygen. AHI stands for Apnea Hypopnea Index which indicates pauses in breathing (apnea) and periods of very shallow breathing (hypopnea.)
What I have is UARS (Upper Airway Resistance Syndrome.) UARS is a sleep disorder characterized by the narrowing of the airway that causes arousals and disturbances to sleep, triggering the nervous system and releasing adrenaline into the body. Patients with Upper Airway Resistance Syndrome often complain of difficulty falling asleep and staying asleep. They describe chronic fatigue, excessive daytime sleepiness, and/or mood disturbances, anxiety, or mental stress characterized as “fight-or-flight.” For all those years when I laid down to sleep, this is exactly what was happening to me. My airway was collapsing and my body was overwhelmed with adrenaline. During the day I was hanging on, barely able to function, growing more and more desperate, and searching for answers that never came; until I found Dr. Zaghi.
To open my airway, I am going to need maxillomandibular advancement surgery also known as MMA.
But I have an HMO and the MMA surgery is not an option with them. The older I got the harder it was for my body to bear the burden of a lifetime of sleep disordered breathing and the chronic flow of adrenaline and cortisol that ensued. This physical pain coupled with the pain of not knowing what was wrong with me, and the fear that I was never going to get better sent me into a downward spiral of despair. I had gone into adrenal fatigue with Hashimoto’s Disease and hypothyroidism about nine years before and had been unable to work since, so paying out of pocket for the MMA surgery was cost prohibitive. To say I was frustrated would be an understatement and as result, and out of sheer desperation, I turned to yet another palate expander called the DNA. My teeth are no longer flared but there is no possibility of advancement based on my specific appliance’s design.
I am at a crossroads. Because of the amount of advancement I require to breathe, no holistic appliance is going to work. My husband and I have spent hundreds of thousands of dollars seeking help that either did nothing, or made me worse. And so, I have made a decision. I am going to move forward with the MMA surgery. The details have not been worked out yet, but the decision has been made and I am excited!
I have learned so much and I want to give help, hope, and knowledge to others out there experiencing what I have, suffering as I have.
When I found my first ALF dentist, I didn’t know anything about airway restrictions or high, narrow palates and crossbites. I didn’t know how devastating mouth breathing was, or what that even implied. I didn’t know which questions to ask but simply trusted him implicitly. He never told me just how narrow my airway was or that the ALF could have some negative side effects in regards to my oral health. I did ask my DNA dentist questions, but in retrospect I didn’t ask enough, and again, trusted that he was doing what was in my best interest. Both of these (and many other) holistic palate expansion devices are wonderful products and work really well with the right candidates. I am not a good candidate for any holistic palate expander and I fully accept that now. No amount of positive thinking is going to change that. In fact, I am a little narrow but really only require 4mm of palate expansion whereas I require 1 full cm of advancement. If I never expand my palate those 4mm it will not affect my quality of life whereas not gaining that 1cm advancement will. The thought of my life remaining the same fills me with a deep sense of hopelessness and I know I must find a way. I have so much life inside me and so much to contribute and now have a level of support, care, and expertise that I have never known before!
If you are having problems sleeping, experiencing chronic daytime fatigue, have anxiety, if you snore or have chronic sinus congestion and mouth breathe, please, know there is help out there! Dr. Soroush Zaghi and The Breathe Institute are quite literally saving my life and Dr. Zaghi is training doctors and dentists all over the world in this customized and holistic model of care.
Please reach out. Dr. Zaghi and his team of caring and compassionate experts are here to help get you on track and living your life to the fullest! I can personally attest to that!
Wishing you happiness and radiant health!