Now I am a wife and mother of two, and while others with Postural Orthostatic Tachycardia Syndrome might be told there are little options beyond medication, electrolytes, and compression gear, my POTS ultimately resolved with the help of a limbic system rehabilitation program. This may be something you are not very familiar with… I was not. The protocol I utilized in 2012 was the Dynamic Neural Retraining System Program (DNRS) created by Annie Hopper. I experienced gradual improvement and better functioning throughout the 18 months I implemented the protocol.
The concept of limbic system neural rehabilitation was recommended to me by a Functional Medicine MD after we had exhausted all treatment plans recommended for Postural Orthostatic Tachycardia Syndrome by the Mayo Clinic, his well known practice, and 30 additional physicians. I discuss the DNRS resources in detail in Therapy Info. While DNRS doesn’t replace medical interventions, I think DNRS can offer suffering individuals something uniquely fruitful.
I began POTS supporting medication in 2009, Nadolol and Florinef, three years prior to DNRS. The POTS medications controlled my heart rate and blood pressure since 2009, but I experienced no change in ability or symptom improvement for years, despite my numbers returning to healthy range with medication. That was a great source of confusion for me. Why did I continue to feel every symptom and the overall debility of POTS even though my heart rate and blood pressure were normalized with the medication? However, after I began limbic system rehabilitation in 2012 and it was completed in 2014, I was given the green-light by my doctor to slowly taper off my POTS medications. Weeks later, an orthostatic test performed in the clinic and proved I had indeed recovered from Postural Orthostatic Tachycardia Syndrome. So, in 2014, I was free of POTS medication and my blood pressure was stable from supine to standing at 120/78 (previously 80/60) and my heart rate remained in the 70s (previously 135 bpm). I no longer needed the physiological aid of the non-selective beta-blocker Nadolol to slow my heart rate or the corticosteroid Florinef to raise my blood pressure.
It took me 10 years to find DNRS, and my wish is that my story leads you to feeling comfort and improvement in much less time. I am honored to share my story so those with chronic and mysterious illnesses may have hope in their own limbic recovery. My story is a long one, but I offer you the following detail so you may truly believe that you are not alone. This is my full story, written for you with much love and admiration.
At the age of 8 years old, I fell ill with a serious viral infection which caused transverse myelitis in my legs. After 4 months of being unable to bear weight on them, I spontaneously regained the use of my legs. However, my doctors believe this virus altered my nervous system, later manifesting into a very serious and ever worsening chronic illness after a series of additional triggers.
By age 19, I had accumulated a great number of health conditions. Severe Dysautonomia, or Autonomic Nervous System Dysfunction, was the all encompassing diagnosis given to me, which described the dysfunction in each system of my ailing body. The list of clinical diagnoses given to me by a team of Medical Doctors at the Mayo Clinic included:
Postural Orthostatic Tachycardia Syndrome (POTS)
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS)
Multiple Sleep Disorders (including Atypical Narcolepsy)
Irritable Bowel Syndrome (IBS)
Pollen-Food Allergy Syndrome / Mast Cell Activation / Food & Environmental Allergies
Hyperkinetic Movement Disorder / Non-Epileptic Seizures
Multiple Chemical Sensitivity (MCS)
Electromagnetic Hypersensitivity Syndrome (EHS)
Depression and Anxiety
Other conditions I had were mitochondrial dysfunction, adrenal fatigue, leaky gut syndrome, multiple latent viral infections including Epstein-Barr and Roseola, systemic yeast infection (Candida), recurrent bacterial infections, heavy metal (lead and arsenic) toxicity, and suspected Lyme/Bartonella/Babesia infections. Due to the immense discomfort of these conditions combined, depression and anxiety were natural additions to the list.
While in high school, I began experiencing a growing list of pollen allergies, food allergies and sensitivities in addition to chronic sinus infections, exercise-induced asthma, and digestive complications and pain. Years of allergy shots only exacerbated my existing allergies and led to a development of more allergies. I did my best to deal with the stress of academia while my allergies worsened alongside my older sister’s grim struggle with Central Nervous System Lyme Disease. [Christine received IV/PICC line antibiotics and used DNRS for herself and is also well. Her story is found at www.lymetolimeade.com]
During this Allergy Skin Test, I reacted to 54 of the 76 foods, pollens, and animals tested. I was given dual EpiPens as I was told I would need both, oral antihistamines, emergency inhalers, and was recommended a regimen of nasal washes. While these did not resolve my allergies, they kept me somewhat afloat. This test was taken early on in my illness. Had this test been conducted later on, we are sure I would have reacted positive to every antigen tested.
While I attended college to first pursue engineering, my health had fallen apart. By my second year, I was unable to walk up a single flight of stairs with no explanation why. This was quite worrisome to me as I was a full-time student living on my own. But after a quick visit with a doctor, he told me that I had contracted mononucleosis (Epstein-Barr Virus) and from that, immediately developed Postural Orthostatic Tachycardia Syndrome (POTS). My heart rate at rest was 135 bpm, and even while asleep, my heart rate sped along at 120 bpm. Upon standing, my blood pressure read 80/60. At the same time, I had very painful and persistent urinary and uterine bacterial infections, a systemic fungal infection (Candida), painful plantar warts, and heavy metal (lead and arsenic) toxicity.
I underwent series of unsuccessful treatments including multiple rounds of anti-virals, antibiotics, anti-fungals, wart-removal surgery, and one attempt at metal chelation therapy. The anti-viral Valcyte was so volatile, I was rushed to the hospital via ambulance after I had passed out in a bathroom on campus. I was later told that my heart rate was inaudible by stethoscope and my blood pressure so low it did not register on the blood pressure cuff. Needless to say, I discontinued the medication Valcyte after the second time it sent me to the ER. In terms of antibiotics, as soon as I finished one round, immediately I required another as the infection would return in full force. I was on the anti-fungal Diflucan for several months at a time, always requiring another course after I had completed another half-year round. And no matter how many times the Podiatrist removed the warts on my feet, they came back as if they had never been surgically removed. It was clear to all of us that my immune system was not doing its job, but at the time, we had no idea how to reverse it despite our numerous and sometimes very desperate attempts.
All the while, each of these treatments further weakened my body and overloaded my nervous system. I became incredibly resistant to sleep – requiring unusually high doses of medication to feel only slightly drowsy. During this experimentation period to find medication that would help me sleep, I had a serious reaction to a tranquilizer. From it, I developed a sizable hyperkinetic movement disorder in the form of chronic non-epileptic seizures. I convulsed and twitched uncontrollably for hours on end which often resulted in a trip to the Emergency Room. Even after discontinuing the problematic medication immediately, my body continued to shake and convulse a year later. After all of this, it felt as though the neural pathways in my brain had short circuited and fried – likely not far from the truth.
For the extreme exhaustion, I sought treatment from a well-known Chronic Fatigue Clinic. There I tried numerous combinations of supportive and energizing medications and supplements. The IV Nutrient Therapy was actually counterproductive, not to mention I became violently ill after each session. After this treatment, test results showed the mitochondrial output of my cells had significantly reduced and to that of an elderly woman. The treatment was not only ineffective, but it greatly worsened my condition. For the multiple latent infections I had developed, I was treated with Major Autohemotherapy (MAH) Ozone Treatment with Ultra Violet Blood Irradiation (UVBI) at my Functional Medicine Clinic. This IV treatment irradiates pathogens in the blood by having it injected with ozone that goes into a machine under UV light before being returned to the body. After four rounds of this treatment, I could no longer continue due to the severity and intensity of my reactions where I would become violently ill after each session.
I became unable to sit or stand for more than a moment – and even that was done with great difficulty and pain. As you can imagine, I put my schooling on hold and moved back to my parents’ house. I required full-time care from my amazing mother, Cheri. The chest pain, tachycardia, low blood pressure, and blood pooling in my legs limited me to a full lying down position. The blood pooling was so prominent, my legs swelled and become visibly purple if not elevated above my heart. Lying down however was also extremely uncomfortable. Between the incessant palpitations and excruciating nerve pain in my chest and foot that had involuntarily curled and locked all my toes closed, it was very difficult to remain in the reclined position which I was confined to.
Twice I went to the Mayo Clinic in Rochester, Minnesota where the physicians are the best of the best. I was hopeful and excited to learn the information they were going to share with me. They were exceedingly proficient at naming me with a number of diagnoses (all the ones you saw at the top) after the intensive neurological and immunological testing was complete. But to my surprise, the team of doctors explained to me they were not sure a solution existed for me. Perhaps more interestingly, it wasn’t that my condition was something they hadn’t seen before, it was that an effective treatment was not known to them. Despite this hurdle of mystery, we continued on with their best Postural Orthostatic Tachycardia Syndrome treatment.
Over the coming months, I was put on a combination of a non-selective beta-blocker to decrease my heart rate (Nadolol) and the corticosteroid (Florinef), thigh-high compression stockings, and high salt diet to increase my blood pressure. This combination somewhat stabilized my blood pressure and heart rate for a short time, but quite oddly, my chest pain and ability to sit upright never improved. This was perplexing for all of us. With my numbers improved, why was I still debilitated? From there, my parents spent more than $100,000 out-of-pocket on treatments and therapies to find the answer. In the end, I had seen over 35 medical specialists. I tried everything from traditional and experimental allopathic treatments to other various alternative and energy-based approaches only to get worse and worse still. I had the best, most experienced physicians, but my health state had confounded every expertise. No one had yet mentioned the possible application of Limbic System Neural Rehabilitation or had described my condition being complicated by an acquired Limbic System Impairment. This would come much later.
An unfortunate side effect of the treatments I was receiving was further activation and dysfunction of my nervous system. It had become so hypersensitive that normal, everyday sounds frightened me to uncontrollable tears. I was unable to look at a TV, computer, or cell phone screen without getting an instant migraine due to Electromagnetic Hypersensitivity. My eyes were so sensitive to light, I kept them closed 95% of the day to reduce pain. I had particularly pronounced heat intolerance. Temperatures too warm exacerbated my POTS symptoms with painful blood vessel dilation, purple blood pooled in my extremities and at the surface of my skin, and very low blood pressure at 60/40. Temperatures too cool caused more pain in my ice-cold extremities and uncontrollable shaking. The window of temperature I could tolerate was a 2 degree range from 73-75° F. I also developed more sensitivities to food. My diet dwindled down to only 12 food items including spices. My weight dropped below 100 pounds. I had rapidly lost 30 pounds, despite eating 6-7 full meals a day. In hindsight, we learned the reason for the weight loss was due to the medication I was prescribed for sleep – Xyrem, colloquially known as the “date rape drug”.
During the lowest times, my loving family fed me when I was too weak to lift food to my mouth. Then, when my adrenal glands lost their ability to produce any discernible quantity of cortisol, my doctors prescribed me high doses of the steroid. Unfortunately, a side effect I experienced with the drug was intermittent, uncontrollable rage. At one moment, my mind would be calm and the next, I was screaming and pounding my fists on the hard floor to the point of injury. I was absolutely terrified at what was happening and my inability to override these hulk-like “biochemical glitches.” Day after day, I was confined to my bed, and all I could do was listen to audiobooks on a CD-player that slowed down the rate of speech so it wouldn’t startle or agitate me. Despite my parents’ extraordinary efforts to find a helpful treatment, the pain and discomfort were persistent and intolerable. My outlook worsened when more than half my hair fell out. My condition was accompanied by intense feelings of despair, hopelessness, frustration, and no shortage of tears. I was bedridden and was trapped in a body that did not function. Things remained this way until I found something that helped.
This is my recumbent wheelchair. When I was not in my bed, I was in this contraption. By the time this photo was taken, I had already gained back the 30 lbs I had lost thanks to the AIP and GAPS diets. I do not have pictures previous to this time because before then, my family and doctors did not see hope in my future, and didn’t wish to record my long and painful decline.
My doctors, family, and I did not see a way out until I began experiencing positive results with the addition of the Dynamic Neural Retraining System. To this day, I have not seen a more effective protocol to catalyze improvement for Dysautonomia and Postural Orthostatic Tachycardia Syndrome than Limbic System Neural Rehabilitation.
As if better functioning wasn’t sweet enough, my husband and I received the greatest gift of all – a family of our own. Our son and daughter are our greatest joys.
My continued wellness is not from life bringing only ideal happenings. With my second child in 2018, I needed pelvic physical therapy for pregnancy related injury. I also acquired parasites, a common but often overlooked complication in pregnancy. When addressed, the parasites were resistant to pharmaceuticals, which has become more common, I was told. A year of searching for effective treatment brought me to Ayurvedic medicine in 2019, which supplied the solution to the resistant infections in the form of botanical medicines.
In 2020, I was identified with Vitamin B-6/Pyridoxine Toxicity by blood test, when numbness and small fiber neuropathy, diagnosed by skin biopsy, suddenly appeared. The pyridoxine toxicity occurred without “megadosing” and was simply from a slow build up of the vitamin from pre/post natal vitamins taken as directed for the previous 6 years. As it turns out, it’s not uncommon to not process synthetic vitamin B-6, but this is a recent understanding in genetics and neurology. Six months after discontinuing the synthetic B-6 sources, the neuropathy and numbness subsided.
In 2022, I was diagnosed with an unrelated condition, called a channelopathy. I am hopeful the channelopathy will be managed with natural treatment. I can easily say I continue to live a deeply happy and fulfilling life, still free from Postural Orthostatic Tachycardia Syndrome and limbic system dysfunction. Prior to limbic system rehabilitation in 2013, I was deprived of the better comfort, functioning, and joy which I have been so gratefully enjoying ever since.
Today, my husband and I fully enjoy raising our son and daughter. We choose to eat an organic, whole foods, gluten-free diet as a family. We are very close and do as much as we can together. My husband often combines outings with photography. You can even view the landscape photography here for fun!
Many refer to my limbic rehabilitation as a miracle, but I think the real miracle is that my improvement was facilitated by the DNRS Program, a method that is available to others so they can experience their own improvement. In the end, the conditions my doctors and I long thought were life-long sentences, can turn out not to be… anymore.
Holding hope for you,
Continue on. In the following, I describe the methodology of DNRS:
Continue on with a complete photo timeline of my neural rehabilitation process: