I don't know why I am so sensitive to certain environmental
chemicals, but the reality is that I am. My neurologist tells me
that I have a form of migraines that take on an odd array of symptoms that
can be so debilitating that my life has been altered significantly.
Sure, I have a family history of migraines, coming
from both sides of my family tree. But I seem to be the only one
in the family who must ardently avoid my chemical triggers in order to
be free of my migraine symptoms. Because one of my triggers are fragrances
this means that my world has become a very limited one.
Learning to live with migraines hasn't been easy.
By the summer of 1996 I had been living with an unremitting migraine for
over a year. It wasn't until I discovered that fragrances were a
major trigger for me that I was able to start to break free of the pain.
Over the last 4 years I have had to systematically
replace all of the products I use in my home with fragrance-free alternatives
-- no easy task. I have also discovered that fragrances are not my
only trigger, so I have also had to replace most of the products I used
to clean my home, and avoid auto exhaust whenever possible.
Now I find that my migraines have taken on a new,
more subversive form. Instead of resulting in an instant headache,
my triggers now cause other, often disconcerting symptoms. After
exposures to fragrances I can quickly become disoriented and confused,
making it difficult for me to complete my task and dangerous for me to
drive myself home. This disorientation will last for several hours,
then the wall of pain will hit. This can last several hours to several
days, with the aftereffect lasting another 3-5 days afterwards. One
"hit" of perfume can set me back a week -- a loss I can't afford.
Treatment, by the way, is ineffective so far.
There is no "cure" for migraine, and the drugs used to prevent them are
not exactly free of side-effects, nor are they always effective.
The only way I can prevent a migraine is to avoid my triggers, period.
It is a lonely life sometimes.
I haven't always worked so hard to avoid chemicals.
In fact, you could say that I have done just the opposite. Despite
a lifelong fascination with chemistry, I was not inclined to major in it
at first, but after 3 years as a P.E. major I switched to chemistry.
I graduated with a BA in chemistry in 1987, and have been an environmental
professional since 1988. I am currently a free-lance writer, a webmaster
and a mom. I am no chemophobe.
I don't know if my health history would
be of interest, but here it is anyway...
Growing up I was extremely healthy until
At 18 I contracted mono, while at the same
time I was taking anatomy and working with a formaldehyded cat. Each week
after lab I'd have a relapse of the mono. Was sick most of my freshman
year in college.
I started developing severe headaches as
a junior, perhaps as a result of chemical exposures in chemistry lab.
At 21 I developed septicemia from an aggressive
kidney infection. I have never been healthy since.
At 22 I went to work in an office that
had high ambient levels of VOCs. Was sick with sinus and bladder infections,
persistent 'flu-like' symptoms, unexplained fevers, chronic headaches,
and massive upper respiratory drainage until I quit the job at 24.
I had also just moved into a house that had been treated 1 year previously
with chlordane, a now banned termiticide.
At 26 I developed a severe reaction to
Thompsons' Water Seal. About the same time I developed a lump over
my left eye that was sensitive to the touch (recently diagnosed, after
8 years of asking the various physicians I came across, as a neurofibroma).
At 27 I went back to work as a chemist
and became ill almost immediately, developing severe joint pain that required
me to take an hour to get out of bed each morning. Left that job, and was
quite healthy again with the exception of having developed severe migraines
and a sensitivity to cigarette smoke. Meanwhile my lump was becoming worse,
the pain more persistent.
At 29 I went through a divorce and moved
to a house that had a heavy mold content. I lived in that house for 18
months and spiraled into a steady decline. I suffered from an unremitting
migraine for over a year. I was tired, lethargic and in constant
physical pain. As I got the migraine pain under control I discovered
for the first time a clear relationship between exposure to fragrances
and onset of pain. I slowly began the process of removing fragranced
products from my life.
At 31 I moved from that house, slowly improved,
had about 3 months of really excellent health but then winter hit and the
gas furnace prompted another downturn.
At 32 I moved to Colorado, got hit hard
by allergies in March, with reactions to perfumes, mold and natural gas
becoming more frequent and more severe. My symptoms included headaches,
respiratory distress, extreme fatigue, 'pins and needles' sensation in
the face, burning eyes and nose, dental and jaw pain, sinus swelling, and
mood swings, in no particular order (which symptoms is present depends
on what I'm exposed to).
By December, after 10 months of chiropractic
treatment my level of reactivity had been much improved. However,
I was not out of the woods.
At 34 I moved to Alaska and find that the
level of auto exhaust in the air is quite toxic to me. Because people
leave their cars running while they shop, the "fresh air" brought into
stores is highly contaminated. As a result I am unable to shop without
In the last year I've been able to identify
certain exposures that cause problematic reactions:
Fragrances: these are a mixed bag
for me. I can get classic migraines, including head pain, disorientation
and mental confusion, numbness of the face, show symptoms of drunkeness
(slurring of speech, loss of balance, etc.), severe depression, anxiety
and rage, or asthma-like breathing difficulties.
Products containing Glycol Ethers:
severe swelling of the right sinus, burning and unremitting pain.
Auto exhaust: "deer in headlights"
disorientation, loss of ability to make decisions, loss of concentration,
Natural gas: breathing difficulties
when exposure is high, joint pain when exposures are low but chronic.
I'm sure this is not a complete list as
I have made a concerted effort to avoid exposures to known toxins like
pesticides and laboratory chemicals.
It has taken at least 4 years for my body
to detoxify enough for me to be able to identify specific reactions.
Now, because I live a relatively non-toxic lifestyle (I stopped short of
remodeling my home to eliminate ALL sources of low level emissions, so
I haven't completely detoxified my environment) I am able to identify the
source of an exposure and link it to a specific reaction almost immediately.
I now have many days of clear thoughts and little or no pain, which is
a significant improvement over where I was at 4 years ago.
Injured 9/96 by formaldehyde exposure at
SouthWest College Naturopathic Medicine, Tempe AZ.
Despite her discomfort when exposed to
perfumes in classes, Angel says: "The former College President, along with
a RN/psychologist both stated: They didn't want to upset students who felt
wearing perfume etc., was part of their personal individuality/identity.
" Are these the future, caring, non-traditional physicians, who inflict
harm, while preaching Primum non nocere (First do no harm!) ? This
type of concern/compassion for their future patients seems worse than the
allopathic philosophy they subscribe NOT to become! The only natural
thing about them seems to be how they may be naturally assuring themselves
of patients in the future!
This space marks the place where some of
us would share our stories if we were not already being harassed and threatened
for our "strangeness", for speaking out, or just for being disabled. Each
voice lifted makes each lifted voice more likely to be heard, here at THE
WALL, or out there in the trenches of day to day survival and activism.
Call me Barb-ie.
That's not my name, but since I am involved
in litigation relating to my chemical injury at work, I can't use my real
name here. I worked in a very creative regular office type environment
for a fortune 500 corporation - you know - with cubicles and everything.
And this was actually my dream job that I had only recently gotten.
I was healthy and in my late 20's in July
of 1996 when my department was moved into new office suites. Everyone started
getting headaches right away the first day, and everyone was quick to blame
"stress". Well by the third day several of were having more serious
problems (I was throwing up) and everyone was now having dry itchy eyes,
problems with contact lenses, more headaches, etc. and the majority of
people in the office were inhaling Advil and using antihistamines, etc.
My symptoms progressed to a point where I was unable to focus or concentrate
(or even think), I was pacing like a caged animal, I was having respiratory
problems, coordination problems, severe headaches, nausea, itching and
rashes, pustules, intestinal disturbances, emotional outbursts, sore throats,
joint pains, major swelling, light and noise sensitivity, etc., etc.,etc.
In less than 3 weeks time (where I had
only spent approximately a week and a half in the building) the company's
own doctors removed me from the building (and several co-workers soon followed.)
We have since found out that there were numerous problems with the building
we were moved in immediately after construction was completed without the
company "baking out the space" (which was company policy to do), the building
was pesticided prior to our moving in , and was regularly sprayed in the
evenings for ants, the air intake for the building was in the parking lot
sucking in exhaust and gas fumes, there was a photolab in the building
which was essentially vented into our workspace and the HVAC system had
been malfunctioning from the time it was installed so that nothing had
been vented out of the sealed windowless building at all.
As a result of this injury I now have been
diagnosed with toxic encephalopathy, organic brain damage, reactive airway
disease, MCS, and dermatitis among other things, and have had problems
with the thyroid, liver, kidneys, thymus, lungs, adrenals, lymph system,
skin, brainchemistry, hormonal imbalances, intestines, etc.
The past 2+ years have been challenging,
to say the least. I am still battling the WC system, although I am close
to finalizing that case. I am waiting to hear from Social Security if I
am approved. I have not received a dime from either short or long term
disability insurance and am still fighting that. I have a liability
case against the employer and several other parties that is not exactly
pleasant, and could drag on for quite some time. I have been sent to doctors
who say it's all in my head or that I am faking, and I was groped by one
of these doctors during an exam.
I have been very lucky that this injury
has not been as disabling for me as MCS has been for others, and that I
am finally starting to be able to function in a limited capacity in the
world and have started working at an intermittent part-time job, rather
than feeling like a prisoner in my own home.
In spite of how well I am doing, one good
(not) exposure to perfume or smoke or cleaning products or air fresheners
or fabric softener or asphalt or gas fumes or (the list goes on and on)
and I can actually be right back where I started with this whole injury.
My family has been really freaked out over
this whole thing, my boyfriend and I broke up when I was injured because
he couldn't understand what was happening to me, and my friendships have
all been strained because I am continually asking them to accommodate me
by not wearing perfume and hairspray and fabric softened clothes, etc.
and because I can't go many places they want to go.
I have been treating almost entirely holistically:
acupuncture, homeopathy, chiropractic, Chinese medicine, neural feedback,
kinesiology, nutrition, detoxification, herbal remedies, sauna therapy,
energetic healing, colonics, amalgam removals, yoga, qi gong and therapy,
to name just a few. I truly believe these treatments have saved my life
and allowed me to be doing as well as I am. I continue to improve and get
stronger and somewhat less sensitive to my environment with time and avoidance.
I am still very cautious about what I let myself come into contact with,
since I don't want the now lower-capacity toxic load to get overwhelming
The scary thing is that this is for life...
When I was a child, I developed epididymitis
at age 12, which had me in the hospital for 3 weeks, and then home for
another 3 weeks, before my doctors released me to return to school. Some
of the outcomes of that were sterility, loss of resistance to normal childhood
diseases (I had respiratory infections almost constantly from that point
on), and what I believe were the beginnings of fibromyalgia.
For years, I was able to continue functioning
by forcing myself to endure the pain and exhaustion, at least until I had
been in the US Air Force for a little over a year, and was stationed at
Wurtsmith AFB, Michigan in 1981. WAFB is a B52 base, and the air
is full of JP-4 fumes. I developed corneal blisters that were so bad my
corneas were still fogged over 2 years after I got out of the service,
along with photosensitivity and increased sensitivity to all volatile chemicals.
I didn’t realize I had become
sensitized at the time, and so was retrained into "Disaster Preparedness",
which meant that I performed the military equivalent of FEMA services:
writing plans for chemical spills, teaching people how to deal with local
natural disasters, conducting nuclear, biological, and chemical warfare
defense training, managing shelter and emergency response teams, and the
one thing that finally pushed me over the edge into my current state of
sensitivity: operating the gas chamber.
According to official doctrine at the time,
CS gas was perfectly safe - it caused irritation of the skin, eyes, and
respiratory system, but had no long-lasting toxic effects. So, operating
the gas chamber was assigned to the lowest-ranking member of the disaster
preparedness staff on base (me), and protection available consisted only
of a gas mask. Now, we know that CS produces cyanide gas when heated (when
exposed to open flame or heated over a hot plate, for instance), which
an ordinary gas mask does not protect against, and we know that it produces
central nervous system damage no matter how it's absorbed.
Since 1984, when I got out of the Air Force,
my sensitivity has remained high enough that standing on a street corner
during rush hour can earn me a trip to the emergency room, as can being
in a room with someone wearing heavy perfume, or walking into a building
where painting, floor stripping, carpet installation, or disinfecting has
I’m now fighting with the Social
Security Administration because I haven’t worked since September
of 1997, due to chemical exposure at my last job. I don't know what
the chemical (or chemicals) was, but I ended up getting a Benadryl injection
in order to breathe again.
Right now, I'm simply trying to live without
spending too much time in emergency or urgent care centers, and trying
to get SSA and voc rehab to properly deal with my disability.
B. in Iowa
My name is Bob.
I am a 42 year
old Journeyman Printer from Iowa. I live in the country with my family
of five, including myself. I worked for the Sixth largest Directory Printer
in North America for the past, over 24 years. Where I was overexposed to
a pressroom solvent on the fifth of March 1998.
As I look back
into the recent past. I had not felt well for at least a couple of years.
As my Company had installed a new, state of the art computerized vertical
Rockwell 12 unit printing press, back in 1993. In the operation of my duties,
I had to clean the press cylinders daily with a Barsol solvent, in an enclosed
area. Many times through the years, I would back out of there with an extremely
high feeling, and then get some air, and be fine later. At the same time
I started noticing a cocked feeling in my left eye, that would come and
go as I cleaned the presses cylinders through the years. As time progressed,
I developed an off balance feeling continually, along with that, chronic
fatigue set in, and I felt high all the time. I thought it was just stress
or something, and didn't give it much thought. Around March of 1997, I
experienced a total loss of libido also. From around 1993 after the new
press installation. I began to have chronic sinus problems, and constant
sinus infections. I went to the doctors several times, complaining of a
dizzy feeling, which I thought to maybe be inner ear infection. Although
I never had that before. The Doctor would find no ear infection. But gave
me antibiotics anyway. I even had a turbinate surgery on my sinuses several
years ago, to help the inflammation and irritation. That breathing a lethal
mist of ink and acid etch daily for years had caused me. Then around two
months before my overexposure in March. I began to start having severe
five minute long sneezing attacks, one hour into each day at work. Along
with terrible low back spasms. My nose and eyes would burn continually,
and confusion, short term memory loss, and lack of concentration set in
also. Even at home, I started having extreme chemical sensitivity problems
to every day household products. Such as perfume, Lysol spray, shampoo
or a host of other every day, man made scented products with fragrance.
My wife thought that I was going crazy I'm sure. As I eliminated as many
of the offending irritants as possible. Which seemed to help me at home
somewhat. But my problems continued at work. The muscle spasms got so bad
that I could hardly stand up. My fellow workers would see me sitting down
frequently, to stretch out my lower back, and complaining of the pain.
Then I began to taste the chemicals in my mouth, a sickening metallic like
taste. I felt so tired just one hour into the day. That I felt as though
I had put a 15 hour day in! A couple of days before I was overcome.
I called in sick with flu-like symptoms. I ached all over and felt like
I was going to die. I sneezed continually and my nose ran a clear liquid.
My eyes and nose burnt terribly, and around them also. I began to make
many job related mistakes. Having a great deal of trouble concentrating
on anything. I worked a couple more days. Then on 3-5-98 I cleaned the
cylinders, a couple more times too many! The Companies Work Comp doctors
had me off work till the April 1st. Doing only the most basic of tests.
They could find nothing physically wrong with me. So I proceeded to the
University Of Iowa Hospitals in Iowa City. Where a prominent Occupational
Medicine Specialist tested me, finally diagnosing me with an acute work
related episode of Solvent syndrome. Saying that I should have no long
term damages from sed expose at that time........ Ya right! He sent
me back to light duty on April sixteenth, then to full duty around the
eighth of June. Where I continued to have Severe chemical sensitivity problems,
at work, and at home until this day. Finally, after an antifreeze spill
at work in late September. I went to our company Doctor after work. As
I was on my way home that night, I just felt terrible. My stomach was churning,
along with a malaise of other problems, that I presented at the clinic.
My employer gave me a three day suspension, without pay. Just for not having
informed them that I was going to their Doctor! I went to my family physician
at that time. Where I asked to be referred to The Environmental Health
Center in Dallas Texas. He signed me a written excuse to be off work for
two weeks, While using the Federal Family Medical Leave Act. After having
given my Company the doctors excuse. And signing their FMLA leave form.
The Companies Vice President proceeded to then threaten me with insubordination.
If I was not at work the following day! I went directly home, threw a few
things in the car, and headed for Dallas!
Upon my return
to work 3 weeks later. My Dallas Doctor gave me a temporary restriction
letter, to present to my employer at that time. And stating my severe sensitivity
to chemicals. And the need for me to be kept out of the Pressroom Environment
until further notice. My Employer proceeded to tell me, that they could
not meet those restrictions. And I was subsequently terminated from my
over 24 year job on 10-22-98 of that same day. I have since been
diagnosed with mild Toxic Encephalopathy, along with substantial nerve
damage to both eyes. Along with severe chemical sensitivity problems. And
have been labeled as totally disabled at this time. With a Workman's Compensation
case pending at this time.To hopefully right some of the wrongs of this
and must be done about the proliferation of chemicals on the American people
in general. People are being treated as disposable items. Companies use
them until all the good is used out of them, and then dispose of them.
Putting the almighty dollar ahead of their workers safety. Our Government,
our Employers, and our Doctors, must wake up and smell the coffee, so to
speak about this issue. Many people of all ages and race's, are getting
very sick from these unnecessary exposures. And unless immediately addressed,
the problem will no doubt get much worse in the near future. How many more
peoples lives will be ruined before something is done about this?
This has really
been a wake up call to my family and myself. As to the poisons that we
are subjected to on a daily basis. Not only at work but at home also. Just
read your toothpaste label. Ours says not to be used by children under
6 years of age. And if anyone ingests any more than is necessary to brush
one's teeth. To call the poison center immediately! Do the words low level
poisoning mean anything to us at all?
I would love to
hear from other chemically sensitive people.We must band together to bring
notice to this chemical poisoning issue in general. And the devastating
impact that it is having on men,women, and children of all ages. My E-mail
address is firstname.lastname@example.org
S. age 7, Michigan
Rental apartment treated for fleas, age
8 months, developed thrush immediately, and her sensitivities to milk and
wheat (and much more) became very pronounced.
Missing much school with repeated ear infections,
fevers, and is sometimes unable to concentrate. She has multiple sensitivities
to cleaning products, synthetics, prescription drugs etc.
Mother is a smoker, from a chemically sensitive,
addiction prone family, and who was exposed to PBB and hospitalized for
it in childhood.