My Personal Saga (Part 1 of 2)

This is the story of how I figured out that I had MCS. I will warn you, it's not a happy story. What's even sadder is that I am doing far better than many others with the syndrome. I have a home, I have money, and I am able to do some work from home on the computer (like this website!). This does not mean that I am well. I try to keep a sense of humor and find something good in everthing I do and learn. As nasty as MCS is, I am grateful that I have been given the opportunity to learn many things I would never have learned otherwise. Adversity is a terrific teacher IF you are open to the lessons..

On a perfectly routine day in August of 1993, my life permanently changed. No one knows for sure why it happened, or what actually went wrong. No one, including myself, knows if this tale will ever come to an end and if my life as I knew it will ever return. All I can do is share my tale and hope that someone, somewhere will appreciate the reality that we aren1t as in control of our lives as we think we are.

In June of 1993, I went to Raleigh to take my architectural licensing exam, an ordeal which had taken fifteen years of preparation; I passed on the first try, which only happens to about 5% of everyone who attempts the grueling four day test. When I came home, I must have been exhausted by the ordeal, as I locked myself out of my apartment accidentally. I went over to the neighbor's to get my spare key from under their back deck. When I got home, I noticed two bites that looked like spider bites. I popped the blisters, and went on about my business. I was bitten on a Thursday, and by the weekend, my foot was swollen, the bites looked like bull's eye targets and I felt like I had the flu. I went to the local emergency clinic where I was given antibiotics and told not to worry about it. I kept in touch with the local poison control center at the hospital, and they thought it was a brown recluse spider bite. By Monday, I couldn't walk, as the muscles in my leg had turned as hard as rocks, and went to see a biology professor at the university where I was working who knew a lot about spiders. He commented that it looked like a brown recluse bite and I needed to be in a hyperbaric oxygen chamber as soon as possible to prevent the spread of the poison, and told me which physician in town knew about the chambers. I saw the surgeon Tuesday, and I got the proverbial "pat on the head" and was told not to worry about it. Incidentally, the drawings I did of the progress of the bites have "disappeared" from my file when I requested copies two years later. The bites took quite a long time to heal and were very painful, although they did not develop rotting skin tissue which is common with these particular spider bites; I just had two small ulcers with the surrounding concentric rings of color.

Six weeks later, I got the only sinus infection I1ve ever had in my life and was out of work Monday and Tuesday. Wednesday was okay, except for the sluggishness from the infection, but on Thursday, all hell broke loose. I went to a routine business meeting after lunch. As usual, the biologist who was the client for the project sat next to me, since we had become good friends as well as colleagues. Since she frequently works in a biology lab, she often had formaldehyde on her clothing. Ever since that day, I1ve had problems being around her, even though she has remained a close friend. When the meeting concluded at 3:00ish, I went down the stairs like I normally did; by the time I got to the landing, I felt sensations that I had never had before. Nothing made sense to me, I couldn't walk straight and I had trouble breathing, as it felt as if my lungs were collapsing on me. I have never had any problems like this in my entire life, although I did have chronic pneumonia and bronchitis as a child. My co-worker was annoyed that I couldn't walk back to the office as fast as he could, so he took off and left me to stagger across campus alone. When I got back, I just sat at my desk and tried to catch my breath. I lay down on the floor and continued to have lucid conversations about building materials and processes, but just couldn't seem to get enough air. I asked the fellow sitting next to me to call Security, as I felt like I wasn1t getting any oxygen. I now know that my lungs were constricting, and it was my first ever asthma attack, but at the time, I was terrified. I eventually began hyperventilating uncontrollably and when the security officers arrived, they put me in a police car with the door open and the engine running, thus exposing me to massive amounts of combusted petrochemicals. I became so "out of control" they called an ambulance and took me to the nearest hospital. Little did I know that I would soon end up knowing the ambulance crews and the emergency room staff by name. While I was in the treatment room, I felt a terrible pain shoot down my neck and into my left arm, producing a tic in my left thumb that stayed for over a month. My left arm became useless and stayed that way for well over six months, yet no one could/would try to figure out what had happened. I was sent home with an anti-anxiety pill and nothing else. I truly felt like I was getting the "hysterical female" treatment.

I usually stopped by a local fast food outlet every morning before work to get some iced tea for breakfast (caffeine!), and I sipped it as I walked up the hill to my office. After that first trip to the hospital, every morning I would arrive at my desk too weak to move and often hyperventilating. The Wednesday following my first attack, I went to an 8:30 meeting with one of the vice-chancellors. I had sipped my tea on the way over to his office, not knowing that I was doing great harm to myself. As we made small talk before the meeting started, everything went black, as if all the blood had suddenly drained from my head. I fell over onto his table and was escorted out of the building to wait for transport to the hospital for the second time in one week. After that I kept having attacks almost daily, mostly in the mornings when I arrived at work after having drunk some tea, or just after lunch when my meals often included iced tea, cheese, soy sauce, etc. I had no idea what in the hell was going on and for months kept passing out for no apparent reason. I would often collapse wherever I happened to be standing and would be in a semi-conscious state for around an hour. What I know now that I didn1t know then was that I was experiencing a rare form of migraine where the blood supply to the brain is shut off at the base of the head (basilar artery migraines).

I was finally hospitalized by a neurologist after the third emergency room visit within a month. They ran a full battery of tests, none of which were pleasant. The only thing that was not normal was my reaction to Isuprel, a drug they gave me during a stress test. Isuprel is a first cousin to adrenaline--a very potent drug that constricts the blood vessels and makes your heart beat faster; the drug was jokingly referred to by the staff as "stress in a bottle." When they gave me the drug intravenously, I told them that I didn't feel well; they tilted the table up and I immediately lost my vision, began hyperventilating and wheezing. The attending physician yelled at me and told to stop being such a baby. I remember screaming at the top of my lungs for them to stop the test, which they reluctantly did. How I got the strength to speak, I1ll never know; I can only say that it was Divine Intervention and/or the "fight or flight" response at its best. The cardiologist came in later and authoritatively informed me that I was "upset" and he wanted to repeat the test with me sedated. I1ve been on my own since I was 17 and I've traveled halfway around the world by myself; I don't get "upset," especially by medical tests. You can guess what my answer was to that request. I1ll give you a hint: two words, both begin with consonants, and they weren1t "Hell, no".

The last morning that I was in the hospital, I tried to recreate what a typical morning was like for me, including foods. I drank a cup of coffee and walked up and down the hall, trying to reproduce the effects of caffeine and exercise; sure enough, within five minutes, I became as limp as a rag doll, everything went black, and I began hyperventilating. It became evident that caffeine was a problem, so I was finally sent home with the advice to stay away from it, as well as to "see a shrink." No one spoke to me about migraines and known "trigger" foods that cause them. Five days of pure hell, only to be given a big bill, insulted, and told to stay off coffee.

Up until this point, I had made no connection between the spider bite, the sinus infection, or the fact that certain foods were causing these bizarre symptoms. A good friend at work suggested that I start keeping a food diary, and I soon learned that certain foods made me sick--anything that had been aged or had a stimulating effect. I kept a log in my daily planner of what days I had these "attacks"; more often than not, the diary was filled with entries like, "Drank tea, passed out after lunch" instead of, "Meeting with Joe at 3:00." Even a routine visit to the dentist for a filling replacement went awry. When the dentist gave me a shot of novacaine with an additive of epinephrine, substances which I had previously tolerated well, I immediately began to black out and hyperventilate and experienced my first bout of convulsions. My wonderful and insightful dentist promptly figured out that I was reactive to vasoconstrictors, drugs which are used to close down the blood vessels. I didn't know what in the world a vasoconstrictor was, so he gave me a recommendation to a good allergist. The allergist was quite nice and told me about a certain class of chemical compounds called "vasoactive amines"; the list he gave me included yeast, chocolate, pseudephedrine, ephedrine, cheese, epinephrine, soy sauce, marinades, anything aged, and all stimulants. He was quite helpful in getting me started on my research, but he couldn't make the problem go away--the only advice he could give me was to avoid those foods and drugs.

Once I learned about the foods and stopped eating them, the number of attacks went down dramatically. I even went for a whole month without having one in January of 1994! Slowly, chemicals started creeping in and bothering me, substances that were both in the environment and within my own body. I noticed that when I went to a job site that had new carpeting, fresh paint, adhesives, and other standard building products, I began to lose my vision, hyperventilate (or stop breathing altogether), have convulsions, and become too weak to talk or even move my legs. Even riding in a golf cart around the campus took its toll on me, as the exhaust fumes would drift towards my face. It took me a long time to figure out that petroleum-based chemicals were the specific culprits. I had violent attacks a whole lot more often, as I had a lot of jobs under construction at that time, even though I stayed away from the "trigger" foods. Doing a lot of renovation work put me in constant contact with volatile organic compounds (VOCs), which are chemicals that evaporate quickly at room temperature and are highly flammable. In addition to the frequent exposure at construction sites, my office was under the same roof as the construction shops where a lot of painting, gluing and varnishing took place. There were also lots of typical office chemicals around, such as Wite-Out, carbonless carbon paper, a copier, fax paper, etc. I had to be around a co-worker who smoked, and whenever I got near him, I passed out from the fumes on his clothing. When startled, my own adrenaline, a natural stimulant, would cause a severe reaction.

As you can probably guess, I was not exactly popular with my supervisor by this point. I became so hypersensitive that fumes from diesel trucks driving or idling outside the building would leak under the door by my desk and cause me to pass out. Falling off of my chair began to be an almost daily occurrence. What hurt more than any physical pain was the fact that my supervisor instructed my fellow employees to ignore me when I became ill, as it took time away from their work. I can remember several instances of having my co-workers literally walk over me as I was having convulsions on the floor. It became obvious that I had to do something--my boss was irritated at the inconvenience to him, my absentee record, and my dramatic decline in performance. I went from being the most dependable and productive person in my department to the most unreliable and incompetent within six months. I couldn't think straight, I had a chronic headache, my face hurt from facial nerve inflammation so much that I couldn't eat or smile and, worst of all, I MADE MISTAKES AND WORKED SLOWLY. This is not sarcasm. My employer didn1t seem to be the slightest bit concerned over my health, only about the work on which I was lagging behind. I have yet, to this day, ever received a phone call or card from him.

I left my job in November 1994 to go on temporary disability. I wish I had done it much, much sooner, but having a strong Protestant work ethic, I stayed to finish a major project, which was shelved as soon as it was clear that I wasn't coming back. I had been seeing an allergist at Duke University, and he could see that I was having neurological problems, not allergy problems. He was the first person to suggest migraines, something that I knew nothing about--all of the foods and drugs fit the migraine trigger profiles, but he couldn't explain the odors. I now know that odors can trigger migraines just as severely as foods or stress can. The kindly doctor at Duke was very nice and patient with me, but since he eventually realized that he couldn1t help me, he referred me to a neurologist at the same facility.

The neurologist treated me as if I were nuts. In retrospect, I had described EXACTLY what was happening in my head, down to the specific area of the brain that was the most severely affected. Before I was admitted to the hospital, I wrote to the neurologist and asked her to look for migraines, cardiovascular problems and multiple chemical sensitivities. When I arrived at the hospital, I was hooked up to electrodes that were designed to stay on my head 24 hours a day; they were applied with a chemical which is like an old-fashioned nail polish and has a very highly toxic chemical composition; the stong odor of this chemical caused me to have convulsions for hours. I had to be physically restrained so the technician could finish the job of applying the electrodes (I was flopping around like a fish out of water), yet no one noted this on my chart. The nurse who came to take my vital signs noted a very abnormal heartbeat after this ordeal, and that wasn't noted on my chart either.

The physicians never read a list I had given them which described exactly what chemical and food classes were making me ill: tyramines (a substance found in aged foods and beverages such as wine, soy sauce, beer, cheese and yeast products), petroleum-based odors, and any drug which had a stimulant effect. These particular items are known and common triggers of migraines. The doctors and students just saw a list and quit reading, thinking that I had an obsession about writing lists, never taking into consideration that I was a highly educated person who knew how to research and synthesize information. After a very brief evaluation by the neurologist, I was handed over to a psychiatrist who spent 20 minutes talking to me and then pronounced that all I had was OCD (obsessive/compulsive disorder) because I had made a LIST of the foods, drugs and odors that made me ill. Another psychiatrist pranced in later in the evening, spoke with me for about five minutes and then proclaimed that Prozac would help me, I had better find a good psychiatrist in my hometown, and that I would never get well. I KNEW that this was bullshit and I told him so. Of course, I was labeled as being belligerent and as being in denial. I learned quickly that it is futile to try to reason with psychiatrists, as they have the power to twist any statement to suit their particular needs. Despite the callous attitude of the senior staff, there were a few genuinely concerned medical students who tried desperately to help me. I realized that I wasted my time and money there, only to have harmful information put on my records, be insulted and humiliated by being incorrectly labeled as mentally ill in front of a room full of medical students, and be given another big bill. I was truly suicidal when I returned from Duke, and only my pet iguana and an understanding friend kept me alive. I couldn't bear the thought of someone else taking care of my precious pet, so I decided to live. I found out a year later that any neurological information that was gathered at Duke was invalid because of improper testing protocols--the data wasn1t obtained correctly, so therefore any accurate diagnosis was virtually impossible. There is also no EEG pattern for migraines or MCS. To top it all off, I still had to pay the bill.

Go To Part 2 Of This Story

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