Sunday, February 9, 2014

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:

                                           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

Monday, February 3, 2014

The Accidental Activist Gets In Your Face

You may have noticed the fashion statement in my meme; I've just learned that this is called a Melfie (selfie wearing mask):

Linda Sepp recently blogged about wearing a mask and underscored several other great blogs on the wearing of masks in public so I decided to chime in.....wearing my activist mask, er hat.

First, I empathize deeply with Colleen and anyone with environmental sensitivities who avoids wearing a mask in public from fear of "SCENTUAL ASSAULT". Intentionally spraying perfume at a person with chemical sensitivities is a form of hate crime or at the very least, harassment.  Believe it or not, it happens A LOT, especially in the workplace. This will be evident from a cursory review of the case history of EEOC complaints re: discrimination against the environmentally sensitive.

Reading Michelina's experience of public discrimination and harassment while wearing a mask raises empathy and then a bit of gratitude that I live in Albany, California (next door to Berkeley). Berkeley is the birthplace and heartland of the Movement for Independent Living in the U.S.  The National Center for Independent Living is working on addressing access for those with chemical sensitivities.
Check out their section on environmental health barriers.

In the 2010 paper:
Of the World But Not In It: Barriers to Community Access and Education for Persons with Environmental Sensitivities by Pamela Reed Gibson: the researcher found that people living with environmental sensitivities in Berkeley experience a bit more acceptance, access and inclusion than elsewhere.
(I cannot find a link to the entire text of this paper but I'll email it to you if you send me your address).

The following quote from that same paper explains why I rejoice that I am well enough to go in public and to wear my mask there (at least for short periods).

 " Persons with disabling sensitivities are denied access to community resources regularly and made ill when forced to access them out of necessity. Because this population is excluded from sight, business goes on as usual, and public venues remain the purview of those whose bodies conform to the modern day mandate of imperviousness to toxics."

Having gone past the initial self-consciousness wearing a mask (it's been about 4 years now), I've grown accustomed to and learned from the experience. When people stare, whisper or glance away so I won't see them looking, I get a tiny taste of the life experience of a person with a disfiguring disability .....helps build empathy and understanding.  Usually I don't make eye contact right away so they can have a chance to check it out. When I do make eye contact many folks can tell that I'm smiling without seeing my mouth, and they smile right back! Most of them, except for the woman in the elevator in Nevada who asked "DO YOU HAVE A DISEASE?".

Another gratitude, the I CAN BREATHE honeycomb mask with carbon filter works well for me. I have the lace ones in most colors: from my photos you can see that the multi-colored is my favorite, it just goes with all my outfits and decor.  I have the sport valve filters for yoga class or walking and I just ordered a bamboo activated-charcoal version.

I usually try to match my mask of the day to my other migraine head-gear (hat, head-wrap and/or glasses), but  a full-blown non-responsive migraine attack trumps fashion, as you can see from this portrayal of me on my way to access medical services.

If I'm minding my own business somewhere that is fragrance-free and someone comes along and sits near me emitting "toxic fumes" from their person or clothing I must leave of course, but first, I whip out and don my very clinical-looking white honeycomb mask.  I've found that it's a lot more "in your face" than the pretty ones (because it evokes fear of contagion). Sometimes I explain to the "fumer" the reason that I'm leaving; (sometimes I don't for obvious safety reasons). Once a french tourist to Berkeley had her husband threaten me physically after I informed her she polluted a cafe with her perfume. I told them, "Welcome to Berkeley". That people become violent over their use of perfume tells me that the fragrance chemicals are addictive, the chemical industry designs them that way.

I'm currently in the market for a serious respirator mask to have/maintain in case of emergency; such as, a traffic jam on a bridge, being held hostage in a laundromat, or in the event of our rather frequent Richmond refinery "incidents". I'll have to re-read the mask resources on Linda's blog "Need Protection" to find the right one.

Many folks come right out and tell me they covet my mask (little girls prefer the bright purple), so I refer them to I Can! Others stare at me and seem afraid that I have something contagious. Some of these (mostly children) ask "why are you wearing that?" Then I get to explain about dangers of perfumes and after-shave.

I'm about to begin carrying and passing out the "refrigerator cards" created by Fragrance Stinks. Maybe someone creative out there can figure out how to add the words: "Perfume is Pollution" to the mask itself, (kind of like a sandwich board) so people will get the message while they're staring at the mask.

A note of caution. As my teacher Gurdjieff would say (through the mouth of Mulla Nassr Eddin) "Every stick has two ends". Wearing a mask is a public reminder that we SHARE THE AIR; however, we don't want employers and others to assume that permission to wear a mask to work or school is an effective accommodation.  A mask is not a panacea and should not be used as an excuse to maintain the status quo. More later on the effectiveness of the mask for work. Some of my struggles for work accommodation are described in a past blog.

Another quote from Pamela Gibson Reed:
"The hidden nature of MCS serves the status quo well in that persons with sensitivities disappear from the public scape, are not seen and normalized in others’ eyes, and business is allowed to proceed as usual."
Hey - y'all lookin' at me ???