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30 Things About My Life with Migraine and Chemical Sensitivity

This is a reader-submitted story.

1. My diagnosis is: migraine and osmophobia
2. My migraine attack frequency is: 25-28 days per month
3. I was diagnosed in: 2004
4. My comorbid conditions include: obsesity, depression, anxiety, agoraphobia, chemical sensitivity.
5. I take 6 medications/supplements each day for prevention and 3 medications/supplements to treat an acute attack
6. My first migraine attack was: too early to remember
7. My most disabling migraine symptoms are: pain, vertigo, dysphasia, visual changes, severe sensitivity to chemical (synthetic) fragrances and to VOC.
8. My strangest migraine symptoms are: reading thoughts and emotions in others
9. My biggest migraine triggers are: synthetic, chemically based fragrance found in many many personal care (think- other people) and cleaning products (think- anywhere but my own home), as well as laundry products (think dryer vents).
10. I know a migraine attack is coming on when: my vision is double, blurry or I see spots or glow-worms at the side of my peripheral vision, or I mix up words/can’t find word, or I get immediate piercing pain upon exposure to fragrance.
11. The most frustrating part about having a migraine attack is: trying to decide what to do, how to handle, when I am unable to think straight.
12. During a migraine attack, I worry most about: whether it is causing permanent brain damage.
13. When I think about migraine between attacks, I think: What does “between attacks” mean?
14. When I tell someone I have migraine, the response is usually: “Oh I get those too, did you try…..(fill in any medication, remedy, etc.)”
15. When someone tells me they have migraine, I think: I hope it’s only episodic and they are doing what they can to prevent it becoming chronic.
16. When I see commercials about migraine treatments, I think: Someone’s making a buck.
17. My best coping tools are: social media, family, spiritual practice, yoga.
18. I find comfort in: my garden, cats, grandson.
19. I get angry when people say: “It’s only a little (perfume)”, or “It’s all natural (fragrance)”. To me it doesn’t matter, I’m sensitive to very small amounts of chemicals.
20. I like it when people say: How can I become fragrance free so I can be your friend.
21. Something kind someone can do for me during a migraine attack is: bring me some soup, and/or clean the cat box.
22. The best thing(s) a doctor has ever said to me about migraine is: Haha, my neurologist once said that when I do yoga inversions it makes my brains “slosh around” in there (he was joking to try and cheer me up. I was upset because I’d just been triggered during my Iyengar yoga class for the first time in 11 years of practice.
23. The hardest thing to accept about having migraine is: I had to give up my career and I’m unable to date.
24. Migraine has taught me: That really all we have is our inner lives, and that inner life can strengthened through pain.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “The more difficult the conditions, the more productive the Work, as long as one remembers the Work.” This quote is an aphorism of G.I. Gurdjieff and is about the Sacred Work (on One’s Self) that he taught.
26. If I could go back to the early days of my diagnosis, I would tell myself: Take this very seriously and do everything you can to manage it to prevent it becoming chronic.
27. The people who support me most are: my Sister and my Daughter.
28. The thing I most wish people understood about migraine is: I have symptoms all the time (sensitive) even though I might look okay and I don’t always tell people how dizzy, pained, etc. I am.
29. Migraine and Headache Awareness Month is important to me because: there is always new information from the blogs, social media, and the conference.
30. One more thing I’d like to say about life with migraine is: Everyone who has migraine should take great care to eliminate synthetic chemical fragrance from their environment. The ingredient “fragrance” (read the label) is a potpourri of petrochemicals that are not disclosed to the consumer. many of them have been found to be NEUROTOXIC as well as carcinogenic and causes of ashthma attacks, COPD, dermatitis, etc.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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Travel Lodgings with Fewer Odors and Chemicals

If odors or chemicals trigger your headaches, traveling can be miserable. The moment of opening the hotel door and having a scented room spray rush out fills me with dread because I know that I may spend much of the trip in that very hotel room with my head pounding.

Nancy Westrom, who has multiple chemical sensitivity, has created a guide to vacation lodgings with reduced toxicity (and often odor). A few of the options are listed online and you can buy a printed directory for $17. The directory, which was updated this year, lists 285 different “safe” US vacation lodgings and 30 international locations. It also includes 51 campgrounds, most of which are in the US.

If you need to stay somewhere not on the list, she recommends reserving lodging as far in advance as possible and e-mailing to ask for your needs to be met, following up to make sure this has been done and leaving a generous tip for housekeepers. For herself, she asks for rooms far away from renovations and with lots of windows. I’d also make sure the windows open to rid the room of residual perfumes.

The Safer Travel Directory is a brilliant idea with lots of information to make travel a little easier for us. Now we need to come up with a guide on dealing with the environmetal triggers of headache found in cars, planes, trains and buses. Any ideas?

(For more information online about lodging for odor- and chemical-sensitive travels, Google green hotels.)

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Indoor Air Quality

Yesterday I psyched myself up for a day of rug shopping. I knew I’d be doing a lot of driving and that I’d probably get lost, so I grabbed some CDs, and packed water and trigger-free food in case I got hungry. Within 30 minutes total at two furniture stores, my headache was almost unbearable. I headed home with all my packed essentials untouched.

I blame the rugs, with their adhesives, moth-proofing chemicals and artificial latex backing, but everything from wood finishes on tables to couch cushions was off-gassing. I’m now worried that all the furniture and rugs in my future will have to be made of natural fibers without any chemicals or artificial latex.

Unfortunately, “healthy furniture,” as it’s sometimes called, costs three times as much as “regular” upholstered furniture. Chemical-free carpeting can be cut and bound like a rug. Too bad it’s only available in solid colors or patterns and textures that I don’t like. So, I can either have products that don’t make me sick and don’t fit my decorating scheme or products that look great and give me such a headache that I can’t sit in my living room.

Ever the researcher, I’m reading about chemical sensitivity and indoor air pollution. Now the goal is to not go overboard and banish all chemicals from my house. It’s not realistic and probably not necessary. As an EPA booklet says, “The relative importance of any single source depends on how much of a given pollutant it emits and how hazardous those emissions are.” Although, further on in the pamphlet, it says,

“Some sources, such as building materials, furnishings, and household products like air fresheners, release pollutants more or less continuously. Other sources, related to activities carried out in the home, release pollutants intermittently. These include smoking, the use of unvented or malfunctioning stoves, furnaces, or space heaters, the use of solvents in cleaning and hobby activities, the use of paint strippers in redecorating activities, and the use of cleaning products and pesticides in housekeeping. High pollutant concentrations can remain in the air for long periods after some of these activities.”

Avoiding pollutants isn’t my biggest concern; avoiding pollutants that trigger headaches is. Or do all indoor air pollutants add up to contribute to headaches? Will my pain trump my love of houses and interior design, just as it has for food, dogs and yoga? Or will I have to shell out big bucks to keep it from doing so?