Monthly Archives: October 2014

Mold and Me (part 3)

After losing my voice to a severe and painful stutter I was tested for a stroke. When the tests came back negative my neurologist put me on high doses of Klonopin to “reset my brain.” It helped with some of the anxiety of being diagnosed with a serious and disabling illness but it didn’t help the stutter and it made my brain work much slower.

I worked closely with my PCP on treatments for the Intracranial Hypertension and the accompanying headaches, often seeing her once a week. My headaches improved through the course of the year but didn’t go away completely. I felt well enough to work at several points but the stutter was persistent and didn’t respond to treatment and the headaches always returned. Being unable to communicate clearly was a big disadvantage in this information and telephonic age. Attempting to talk on the phone was enough to make me cry from pain and frustration. I took to writing notes to my doctors so I could communicate with them easier.

I finally saw a speech specialist and was diagnosed with atypical Spasmodic Dysphonia. The standard treatment for it was Botox injections in the vocal cords. I did three courses of it but the improvement wasn’t enough to make it worth continuing. After the injections I could speak in a strangled, rough voice for a few weeks that still hurt. One friend said I sounded like “a sexy Marge Simpson.” I was warned not to whisper as it would damage my vocal cords beyond repair but I ended up communicating that way because it was easier and more clear than stuttering.

I had an opportunity to move into a friend’s daylight basement and I jumped at the chance to get out of my moldy apartment building. The basement smelled odd but I only found a few spots of mold in the window sills and in the bathroom. I kept the heat on and placed air purifiers throughout the space. A few weeks before moving at the end of November I started Predinsone to reduce the inflammation on my brain and help the persistent headaches. My PCP commented that it was obvious I had systemic inflammation but it didn’t appear on standard blood tests. I felt surprisingly well before and immediately after the move; I weaned myself off Klonopin and I was gaining strength. Then in January 2011 the muscle spasms began.

Things escalated quickly from that point. Within weeks the muscle spasms turned into muscle cramps. I started trembling, got pins and needle pain in my feet, had presyncope episodes where I’d nearly black out upon standing, and my fatigue returned worse than before.

My neurologist ordered blood work to check for vitamin deficiencies and autoimmune diseases. When they were negative, she ordered MRIs of my brain and lumbar spine to look for lesions that would indicate MS and did an EMG in my right arm, hand, and leg to check for large nerve impingements. She found osteoarthritis in my lower lumbar region but nothing else. By this time the pins and needles pain increased and spread. Besides my feet, it attacked my thighs, buttocks, lower back, hands, and forearms. At various times it felt like I was being attacked by fire ants, clawed by tigers, zapped by electric eels, and stung by jellyfish. I had other weird sensations that felt like cats purring and frogs jumping under my skin. There were days I couldn’t wear clothing or have anything touch my skin. I spent most of my time lying on my left hip, the one place I could stand to put pressure on. I slowly weaned myself off Prednisone against my PCP’s advice because I had a feeling it had something to do with my new and rapidly progressing health problems.

I ended up in my PCP’s office in tears when the electric shocks started in my crotch area. She put me on Amitriptyline, an antidepressant often used to block nerve pain signals to the brain. I placed a desperate call to my neurologist’s office and saw her about it as well. She offered to refer me to a rheumatologist for the osteoarthritis but wouldn’t do anything about the neuropathy since the tests she ran all came back as normal. She told me it was probably Fibromyalgia and I should learn to live with it. I’d lived with Fibromyalgia for more than 20 years; it wasn’t Fibromyalgia.

My PCP was more sympathetic. She referred me to a nerve pain specialist at the teaching hospital in Portland. In July 2011 I spent the better part of a day in testing: more blood tests, another EMG, skin biopsies, and autonomic testing. I left like I was getting close to some answers. After the testing I switched from Amitriptyline to Nortriptyline. It eased the pain better and didn’t have the severe fatiguing side-effects I had with Amitriptyline.

Since I was becoming more and more disabled and my parents took me to all my out of town doctor’s appointments, I decided to move closer to them when they offered to buy a house for me. They were 80 miles away from me and out of town trips usually ended up being all day or over night trips. In September 2011 I moved inland. A few days later I got the test results from the nerve pain specialists. For the first time since my Spasmodic Dysphonia diagnosis I had abnormal results. I was diagnosed with Autonomic Nervous System Dysfunction (Dysautonomia), Small Fiber Neuropathy, and Carpal Tunnel. The EMG, skin biopsies, and autonomic tests all came back abnormal. The specialist was too far away to be my primary doctor so he released me to the care of my PCP which was fine with me. I just needed him to diagnose me.

Immediately I started reading about Dysautonomia. I needed a new primary care doctor since I’d moved and finding one familiar with SFN and Dysautonomia was important to me. Numerous blogs by other Dysautonomia patients recommended Integrative/Functional Medicine. They had improved quality of life with IM if not complete control of their symptoms. My PCP had also recommended them since I reacted so poorly to standard medical treatments and IM is based more on scientific evidence than the guesswork used in the naturopathy I’d tried in 2009. My first appointment with my Integrative Medicine MD was in January 2012.

Mold and Me (part 2)

Between 1993-2001 my health was okay. I had problems but nothing that impeded my ability to go to school or work. I preferred late morning or afternoon shifts instead of mornings, I had several bouts of systemic yeast infections, I had lots of issues with food sensitivities, and most winters I got bronchitis at least once. Fibromyalgia wasn’t a word recognized by the general public at that time so I simply told people I had a sleep disorder.

In 2001 I changed jobs and started working at a marine hardware store around VOCs from industrial paints and resins. My desk was in the marine paint storage area and the off-gassing was overwhelming. That winter I started getting giant (3 inch) hives every time snow touched my skin. It was painful, disconcerting, and a puzzle to doctors.

In 2003 I moved away from snowy Alaska to the more temperate Oregon Coast. My apartment had evidence of minor water damage in the past but it wasn’t anything I worried about. Shortly after moving I was diagnosed with minor hypothyroidism and put on Synthroid. A year later I was diagnosed with tachycardia. In 2007, after nearly a year of extreme fatigue, I was diagnosed with sleep apnea. By the end of 2008 I had problems controlling my Fibromyalgia symptoms. I didn’t react well to standard or experimental treatments so by mid-2009 I had to take short term medical leave in order to get a handle on my pain and fatigue.

In the midst of my dealing with another major Fibromyalgia flare the people in the apartment next to mine were evicted. The apartment manager found water damage and mold throughout the first floor of the apartment from a leaking washing machine. Mold was growing at least a half inch up the walls and not only did the carpeting have to be replaced, so did the subfloor.

I was off work for almost 3 months and it took another 3 months for me to control most of the pain, fatigue, and sleep issues that accompany Fibromyalgia with the help of a Naturopathic Doctor, an acupuncturist, a massage therapist, and my own intuition. Going back to what the MD in Alaska told me in 1993 about the link between unrefreshed sleep and pain gave me something to focus my energy on improving and it worked. By December I only experienced increased pain and fatigue during the week before and during my menstrual cycle.

Then the headaches started. They were unlike any headache I’d experienced before. Not migraines since they originated at the top of my head. My head would even get hot to the touch from them. I thought they were thyroid headaches at first since my mom has similar headaches when her thyroid levels are unbalanced. I returned to my primary care physician and switched back to Synthroid instead of the T3/T4 compounded thyroid med my ND put me on in June.

By March 2010 we knew something was seriously wrong. Migraine meds didn’t help and pain meds barely touched the pain. The headaches kept increasing in intensity until the left side of my face and my left arm went numb and it felt like bugs were eating my brain. An MRI was ordered and, after it came back as normal, my PCP sent me to an ophthalmologist. After waiting for hours to see him, he diagnosed me with Pseudotumor Cerebri/Intracranial Hypertension. There was too much fluid in my skull and it was pushing on my optic nerves. It could cause blindness as well as all the symptoms of a brain tumor. It was March 26th, 2010.

I attempted to work with a constant headache and while on pain meds. It was stressful and difficult but I was able to split my lunch hour into two half hour segments so I could lay down and rest for a short time in the afternoon. Then on April 15th I started stuttering. It sounded and felt like I had had a stoke. By the end of the next week it got so bad I couldn’t speak at all without it feeling like something was stabbing me in the brain. I left work on my lunch break on April 23rd and never returned.

Mold and Me (part 1)

Learning in September 2013 that the basement I lived in from November 2010 to September 2011 was teeming with hidden mold opened up a whole new avenue of treatments and health implications.

I’m not unfamiliar with mold. I grew up in a moldy trailer, went to a moldy school, lived in a flood damaged house, lived in a moldy dorm, and moved in 2010 to get out of a moldy apartment. I’d also been diagnosed with Sick Building Syndrome several times, an illness which now falls under the biotoxin umbrella of Mold/Biotoxin Illness. My entire life was spent in or around mold and biotoxins. It’s a credit to my admittedly faulty genes that I managed to partially recover from each major exposure until I was disabled in 2010 at age 36.

From infancy to age 10 I had allergies, asthma, food sensitivities, sleep issues, and fatigue. I had a lot of respiratory illnesses. My health improved after we moved into a new house and I started getting allergy shots. There’s a gap in my medical records for two years as I was healthy enough that I wasn’t seeing the doctor constantly. I even joined the volleyball team in middle school despite morning practices.

Then in October 1986 the first floor of our house flooded with five feet of water. My migraines started shortly after. It took nearly two years to get them under control with the help of a chiropractor who diagnosed me with inverted curvature of my neck. It’s a common whiplash injury but I’d never had whiplash. Spinal molding techniques and many chiropractic appointments eased my migraines and currently I average 2-3 a year. A visit to a chiropractor to pop my neck back into place eases them almost immediately.

In high school, I was diagnosed with chronic sinus issues that cleared up when I wasn’t in school. The school’s swimming pool exhaust fan was right next to the school’s fresh air intake vent. The chemicals from the pool circulated throughout the school. Poorly designed HVAC systems are a major source of biotoxins. On top of that, the school had a flat roof that was prone to leaking. It wasn’t unusual to see garbage cans in the first floor and second floor hallways during the winter, catching water that leaked through the roof and through the floor above. The presence of that much water means mold was growing unseen within the floors and walls. My doctors had no idea what to do about my inflamed sinuses so I was put on antibiotics for approximately 20 days a month, 9 months a year, for 4 years. Now many doctors recognize allergic sinusitis but in the late ’80’s- early ’90’s I was diagnosed with sinus infections, again often accompanied by respiratory issues, and given antibiotics.

I left the cool, dampness of the Alaskan coast for the desert of eastern Washington for college. We hoped the dry heat would be better for my health. It wasn’t. My dormitory was an older building that had the bathrooms/showers renovated over the summer. Soon after moving in my knees started hurting, swelling, and were hot to touch. Weather changes made it worse and I became a reliable barometer. The pain continued to get worse but an appointment with an orthopedic surgeon didn’t show any damage. By the end of the school year, I was on Tylenol 3 with codeine to control the pain and spent many days lying in bed in haze of pain and drugs. My health improved when I went home for the summer.

I moved into a different dormitory the next year and, while the knee pain wasn’t as severe that semester, I started getting sinus problems again. Appointments with ENT’s, multiple sinus x-rays, multiple courses of antibiotics, and even Prednisone barely helped. I went home for Winter Break and my health improved again. As soon as I returned to school, the sinus issues returned. It was another case of Sick Building Syndrome like I experienced in high school. I never learned what I was reacting to in that building but it was probably another poorly designed HVAC system. I moved back into the building I lived in my freshman year. That was a mistake.

Almost immediately the pain that started in my knees started spreading to other joints. At my worst, I couldn’t type because my hands/fingers hurt so much and I couldn’t chew solid food because of the pain in my jaws. I could barely walk and was living on strong NSAIDs and Percocet. A visit to a rheumatologist halfway across the state got me close to a diagnosis but her own health issues meant I never saw her again. I finished out my sophomore year with the understanding that if we couldn’t get my health under control, I wouldn’t be returning in the fall for my junior year.

Soon after my 21st birthday, I saw an Internal Medicine MD in Anchorage who took a look at my medical records, poked me in a few places, and proclaimed he knew what was wrong with me. I had Fibromyalgia. He explained that it was chronic pain condition caused by a sleep disorder. For some reason my body wasn’t getting stage 4 sleep on its own but with proper medication, lifestyle changes, and regular exercise I could control my symptoms. It took several months of trying medications before I found one that helped (cyclobenzaprine). The drug combined with a sleep schedule and walking almost daily pushed the pain and fatigue down to manageable levels. I finished out my college career in fairly good health and in off campus housing.

Is Integrative/Functional Medicine Right For You?

That is a question you have to ask yourself before seeking out a clinic. I went with IM because my health was continuing to decline and I had multiple bad reactions to standard treatments used by conventional doctors. Many dysautonomia patients have blogged about their experiences with IM and how it their improved their quality of life. My previous medical provider also recommended it.

Integrative/Functional medicine uses a holistic method of medicine and many IM clinics have Osteopathic doctors on staff as well as massage therapists, nutritionists, and acupuncturists. They treat the whole body as one interconnected system and use a variety of evidence based methods to improve the quality of life of their patients. It requires a shift in thinking from the treating symptoms model of medicine to finding the underlying causes of illness, which may be genetic, cellular, hormonal, microbial, viral or any combination there of, and personalizing treatment to improve function. It’s not a cure for chronic systemic illnesses but it is a method to gain control over them. It’s also not an easy process – there are no taking pills and you feel better in a few weeks. It requires experimentation with supplements, medications, diet, exercise, and alternative therapies to find the best combination for you. You’re also not a passive participant in your care when it comes to Integrative/Functional Medicine. My MD encourages me to read about my health problems and bring the information to her. She believes that a good patient is a well-informed patient. No one is more invested in improving your health than yourself.

I’ve been criticized for advocating Integrative/Functional Medicine and sharing my journey with the world. Make no mistake, this is my journey and my experiences with Integrative/Functional Medicine and I am seeing improvement using their methods. My health still has lots of ups and downs but overall I am improving. I won’t stop advocating or writing about my experiences because if it helps one person improve their own symptoms that’s more than my detractors can say about their negativity. Hope is never a bad thing whereas negativity is toxic.