Migraine and Osmophobia - It's the Chemicals Silly!

Diagnosis: Osmophobia

According to my neurologist, I have:

• Migraine 346.00
• Osmophobia (sensory disorder of smell) 781.1

The migraine transformed to chronic several years ago.  I experience disabling symptoms more than 15 days each month. Where once I had occasional discrete migraine episodes, they now tend to blend together. I'm lucky when I get 2 or 3 "good days" in a row. I am using all my resources to care for myself, avoid migraine triggers,  and regain my ability to live fully.

Unfortunately, avoiding triggers in a world full of fragrance is well nigh impossible for the osmophobe.

Migraine is a hereditary disease sometimes accompanied by osmophobia. In fact, my mother used to get migraines from perfume.  In today's toxic world scent-triggered migraine seems to have become a disease of civilization; a small part of a vast, preventable public health problem.

Osmophobia can manifest as an "extreme sensitivity to odors" during the headache phase.

Yes, I do exhibit high sensitivity to odors during a migraine.  I also experience an extreme sensitivity to fragrance  100% of the time. Migraine heightens my experience of all smells, pleasant or unpleasant, but non-petroleum-based odors do not trigger migraine, fragrance does.

"Fragrance" refers specifically to a mix of undisclosed, unregulated petrochemicals in volatile form found in perfume and in many consumer products.

Fragrance fumes ignite multiple debilitating migraine symptoms in my body, upon contact with my olfactory nerve. Symptoms include, but are not limited to: visual disturbances, double or cloudy vision, tunnel vision, brain fog, confusion, fatigue, loss of memory, mood swings, dizziness, dysphagia, vertigo, nausea, and of course, PAIN in the head, eyes and neck.

That I am very sensitive to strong odors is an understatement. Fumes from the neighbor's dryer vent feel like chemical warfare (think someone spraying RAID Pesticide spray into your face). Proximity to someone who has applied Old Spice After Shave lotion feels like sticking my head in an oven full of EASY OFF oven cleaner.

It's not the smell. It's the chemicals!

Osmophobia can be described as "smelling things that aren't there" during the aura phase of a migraine episode.

I do NOT "smell things that aren't there". Quite the opposite; I possess a heightened ability to detect what IS THERE; that is, volatile chemicals, many of which have been  scientifically proven  to be neurotoxic, carcinogenic and otherwise hazardous.

"Phobia" implies unreasonable fear.  On the contrary, fear of fragrance is highly reasonable because fragrance chemicals can exacerbate and/or cause diseases in any of us; even in those who enjoy the smell of chemically scented products.

                                                 We are not alone

What a relief to find an online community of folks living with Multiple Chemical Sensitivity (MCS); Environmental Illness (EI); and/or Chemical Injury (CI); sometimes referred to as Canaries (whose coal mine is modern civilization).

Although not diagnosed with MCS,  I identify as a canary and have learned so much from them. I've learned how to protect myself from chemicals, how to create a #FragranceFree environment and how to advocate for rights as a person with an invisible disability.

I am humbled by the songs of isolation and discrimination sung by Canaries around the world.  Many struggle alone and impoverished to find safe environments in which to work, live or obtain medical treatment or education. Along the way they meet harassment, ridicule and grow increasingly sensitized from repeated exposure to fumes.

Public awareness is growing among health, environment and family advocates who have the energy for activism. Several robust U.S. advocacy organizations are impacting commerce using pocketbook pressure. Please check out the consumer awareness campaigns and resources at:

• Women's Voices for the Earth, 
• Campaign for Safe Cosmetics, 
• Environmental Working Group, and 
• Safer Chemicals, Healthy Families .

                                   
                                           Educate and Protect Yourself 

I cringe when favorite #spoonie or #migraine bloggers post about pedicures, bubble baths, salon appointments or  aromatherapy used as a form of self-care. In all likelihood these "treats" are full of poison. Even products labeled, "unscented", "natural", "organic" tend to have chemical ingredients. Although the smell may not "bother" you or cause an immediate reaction, they are nonetheless hazardous to your health. Some essential oils are created using petrochemical solvents and are not safe.

You may not have osmophobia or MCS "YET"*. But the toxic, secret ingredients of "fragrance" include undisclosed and under regulated sensitizers that can begin to affect anyone, any time.

Mogridge- Senses under assault

 *Y.E.T. = You're Eligible Too

Talking about Perfume at Work

A blog featured recently on Migraine.com asked readers:

 Do you have a coworker who insists on wearing perfume even though it triggers your migraine? How can we communicate with these people so they understand the impact their actions have on our health without going to war with them?

I began to comment and realized I could write a book on the topic of communicating with co-workers about perfume as a migraine trigger. 

Take what you can digest and leave the rest. 

I am a person living with migraine disease and highly sensitive to "fragrance": a chemical concoction ubiquitous in the personal care, cosmetic and housekeeping products sold in stores today.  

Fragrance blocks my access to work, home, family, community, recreation, and travel. I've made acquaintance with others who experience the same barriers; people living with Multiple Chemical Sensitivity, allergies and other diseases.

What Everyone Should Know about Migraine

There are many reputable resources for more information about migraine. 

In a nutshell, migraine is an incurable, disabling neurological disease that interferes with one or more basic life functions depending on the symptoms and severity of the disease in the individual.  

The nervous system of a person with migraine disease tends to be sensitive in varying degrees to various forms of sensory input; e.g., light, sounds, smells, touch and/or movement. (I have been overwhelmed by the input from my "sixth sense", but that's another blog altogether.) 

Degree and type of sensitivity may change over time. When volatile fragrance fumes reach the trigeminal nerve endings in my nasal passage I experience the following: 

• an immediate or delayed migraine episode; or, in the case of chronic migraine, a flare-up;
• excruciating pain; 
• additional symptoms of brain fog, confusion, aphasia, fatigue, blurred or double vision, and anxiety;
• strong aversion to the sensory experience (duh)!

My neurologist calls this "Sensory Disorder of Smell" or "Osmophobia".

Triggers

One needs not a medical degree to know that the identification and avoidance of triggers are a primary means of managing migraine.  Good luck with that if you have the same trigger as I. At present, the only certain method I know of to avoid fragrance is total isolation from people who are not completely fragrance-free. People are the primary carriers of fragrance, although some folks douse their pets in it also.

Ineffective Accommodation for Fragrance Sensitivity

In lieu of a fragrance-free workplace policy many employers choose to "allow" an individual with sensitivity to approach co-workers, explain that their fragrance causes a health problem, and request "consideration".  In my opinion, except in rare circumstances, communicating directly with co-workers about one's sensitivity to fragrances is inadvisable, ineffective and if it becomes your only option in order to work, is a potential violation of your civil rights. Any employer or employee considering this approach should obtain legal consultation.

Many factors combine to render this "accommodation" ineffective.  this post primarily reflects the problems with "communicating" directly with co-workers about it. . 

  Alienation/Stigma/Harassment

• Personal odor is a touchy subject. Most people in our culture consider a discussion of personal care products and odor offensive. Frankly, most folks are personally insulted when told that their "signature scent" or their deodorant is making you sick. It's a good way to lose rapport with colleagues. Most supervisors have realistic fears of discussing the topic.
• Fragrance chemicals are mixed to be as addictive as possible. Chronic perfume users are known to become angry and resentful toward anyone coming between them and their drug of choice. In many settings the consensus is that wearing fragrance is a privately held right of the individual.  Remember the smokers' rights movement? 
• It's possible to offend and alienate people without speaking. A co-worker once complained to management that I "sniffed" him. I had been (discreetly I thought) assessing whether I could safely board an elevator car with him. A friend of mine     received a reprimand after instinctively holding her nose when a colleague entered the room wearing a cloud of cologne. This was after management denied her request to wear a mask, (another situation clearly calling for legal advice).

• It is a huge burden on the employee to "investigate" the source of toxic fragrance in an environment, and then address it with who they think is the offender. They're asked to handle a sensitive task under handicapping conditions. Sounds like the opposite of accommodation doesn't it? Sniffing out a "perfumer" causes me immediate head pain and problems seeing, thinking and speaking. My limbic system goes on high alert. Who can communicate well under such conditions?
• How does one maintain a relationship with the cause of one's pain?  From my perspective, perfume and scented aftershave lotion transform "nice" people into aggressive attackers who run skewers through my nasal passage to my brain. Naturally, I get an angry impulse to hit them or run, or both!  I have no appropriate words to describe my feelings for those who continue to wear perfume in full knowledge that it harms the health of others. 
• Singling out the sensitive individual to co-workers too often results in harassment. There are reports of co-workers spraying perfume or installing "plug-in" air fresheners or fragrance diffusers near the sensitive person's cubicle. They may gossip about, ask embarrassing questions of and present “medical” opinions to the individual, usually in public. In one news story a woman reported a colleague wore perfume to eliminate her as competition for a promotion.

Ask Nicely  

In 2004 my request for a fragrance-free workplace was denied, ostensibly on the basis that my employer would be unduly burdened to implement an office-wide policy. Instead I was given the above-described "accommodation". I was encouraged to "politely" explain my problem and ask co-workers to help me. Unfortunately I agreed to this arrangement and suffered for many year.  I finally realized that it wasn't an appropriate option and asked that my employer provide me with a safe (fragrance-free) work station and/or effective support for telecommuting.

Complain?

In 2010 I finally filed an EEO complaint of discrimination on the basis of denial of a reasonable and effective accommodation. I found an excellent attorney specializing in EEO in my sector, and thoroughly educated her on my health issue. Although the judge appeared inclined to decide in my favor, I did not have the health or time to go through the entire hearing process.  I am prohibited from speaking about the outcome of my case, but I will say that I certainly did get better results from filing the complaint than when I asked "nicely" for my statutory rights under the Americans with Disabilities Act. 

Too little too late

June 2012 I was granted an enclosed, fragrance-free work station and had full capacity to telecommute as much as I needed. By then, the migraine disease had transformed from episodic to chronic. I also had severe, chronic anxiety. The stigma of my illness was now entrenched in the office culture and internalized in me. I became more isolated than ever and was passed over for advancement opportunities. Eleven months later my neurologist put me on medical leave for a minimum of a year. 

Although not a source of legal advice, the Federally-funded Job Accommodation Network has resources to assist in identifying job accommodations for those with fragrance sensitivity and also migraine disease. 

Bye for now,

Suki


P.S. Please (I'm asking nicely this time) if you have used perfume or other products with fragrance in the past, it is now time to "fragrance-free" yourself and all those who share your airspace. If you need resources for this, just ask.

Chronic Third Space

Since I finally conceded the battle to chronic migraine and stopped working, I've spent many bedridden hours hangin' online with my new peeps: #spoonies #migraineurs #canaries #chronic #invisibledisabilities ...#whatshallwecallpain?

A predominant theme among us is resentment, fury, and just plain pissed-offed-ness at those "non-spoonies" who dare to offer us unsolicited opinions or advice. 

To this day I harbor resentment against a former co-worker who dared (n 2005) to offer me a cure for my recently diagnosed, incurable neurological disease, called migraine, triggered by fragrance.  I had requested a fragrance-free work space as a work accommodation. Subsequently the entire staff of our office learned about my medical condition (not to worry, a post is forthcoming on the legal aspects of this tale).  A co-worker approached me in a shared area of the office and announced, in her typically insipid tone of voice, "I used to get really bad migraines but  I changed my diet and they stopped” all the while glancing askance at my generous figure. 

Not only did this person ignorantly share her unsolicited experience, she never, over the course of the following 8 years, stopped wearing perfume in the office. Avoidance of perfume was a simple remedy that my doctors had confirmed would be certain to improve not only my ability to work but also my overall health. Her signature scent was reminiscent of Easy-Off oven cleaner and felt like a barbecue skewer through the eyeball, yet she dared to offer medical advice?

Darn, now I've digressed into venomous, fragrance-free ranting - again!  I’m certain my gracious readers will not interpret this as evidence that I am an irrational person much in need of UNSOLICITED MENTAL HEALTH/EMOTIONAL WELLNESS ADVICE. They wouldn't even think of advising me to "calm down" or "breathe", because they can empathize with the impossibility of trying to calm down while mindfully inhaling the chemical equivalent of "RAID" for humans?

Let us leave aside our reasoned response demonstrating the total ignorance behind my co-worker's comment. 

Fast forward to the me/here/now gratefully discovering I am not alone in resenting recommendations for healing; and concurrently finding myself the mother of (gasp!) TWO WHO WOULD GIVE HEALTH RECOMMENDATIONS.

My daughter and son-in-law are wellness professionals, each in several different disciplines. I sure as heck want my kids to succeed in their line of work because I may need them to support me in my not-so-old age if I don't get back to work soon. 

Holy Triptans Migrainemama!  We've been propelled into ........ Third Space! 

I'm a radical believer in my own ersatz understanding of third space. It is a holding place where the subjective experiences  of both the #spoonies and the #healers co-participate in reality.  We're not talking parallel universes here; one doesn’t condescend to “understand how the other can think that way", or, “agree to disagree”. Those acts merely subsume one subjective reality to the other while masquerading as "more real" or even, God forbid, "objective".  Third space is a third subjective reality wherein lie the first two realities, participating in an assumed objective reality- sacred by virtue of inclusivity.

What could result from these worlds colluding ? 

 As Scheherazade would say, "more will be revealed". (But I'm not letting go of that resentment until hell freezes over).