Another Sad Story

I got this email last week as a comment on my web site Fragrance Free World. It just seems lik such a cruel world we live in, doesn’t it?

One thing intrigued me. I’ve never really read about a connection between HPV or other vaccines and MCS. Have you?

Over the last 2.5 years, I have become extremely sensitive to fragrances and have had MAJOR health problems because of them. Up until last October, I’d had migraines on an almost daily basis because of fragrances. For the longest time, my doctors thought it was allergies…. in fact, I’d been on allergy medicine since I was 10 years old… I finally went to an allergist to figure out what it was I was allergic to and it turned out that I wasn’t alleric to anything…. not ever dust! So, after listening to my symptoms (constant sever headache, nausea, dizziness, confusion, easily sicken by motion, poor balance, EXTREME sensitivity to smells) my allergist thought I had transformed migraines and sent me to see a migraine specialist. Last October, I saw the migraine specialist and he prescribed me Topamax (anti-seizure med.) which he said was supposed to raise my tolerance to stimuli! It has made a world of difference. I can’t and NEVER will be able to w ear perfume, or use scented anything and neither will my husband and those coming in close contact with me, but at least now I don’t get an instant headache from every little whiff of fragrance like I used to.

I really don’t understand where all this came from. I myself used to love wearing perfume and loved bath and body works products, but now I couldn’t hate them more! Sensitivities to fragrances run in my family, so I’m sure it has something to do with that, but I think two other things (one huge one in particular) may be to blame for my sudden problems. 1. I moved into central WI to go to school… there are TONS over paper mills in the part of the state. Some days I can hardly handle the smell…. I sometimes wonder if being exposed to those chemicals on a daily basis triggered my problems because I never experienced them until I moved and went to college…. 2. Recently, I was given the 3 HPV shots and shortly after those is when I started having problems…. My dad had a similar problem after getting a flu shot which has had lasting effect on him as well…. there is no way to ever prove the HPV shot had anything to do with my becoming the way I am now, but it seems awfully
coincidental to me.

I feel like my sensitivities I have to fragrances and the migraines I get from them have taken over my life! Every single place I go is scented. It has gotten so bad that I have to sniff the keyboard and mouse in the school computer lab to make sure nobody before me has used scented lotion…. I have to sniff chairs that have fabric on them… I carry peppermint oil around with me to put under my nose ever time I smell perfume, cologne, fabric softener to drown out the smell to avoid getting a migraine and I end up applying the peppermint oil until my nose AT LEAST 10 times a day, I have to bring my own sheets when I stay in a hotel, I can’t go shopping anymore (which was one of my fav. things to do) because the mall REEKS of perfume, I can’t sit near people in movie theaters or ball games, I am hesitant to ride in other people’s cars or go into other people’s houses in the fear that it will either reek of smoke, air freshener, or the new car smell….. the only place I feel
I can be at ease and not always up tight is at home…. and up until I got married, I lived with roommates that were VERY insensitive to my requests of them not using fragrances in the house… so at that point even my house was not a safe haven.

I’ve dealt with people telling me it’s all in my head. My stupid sister-in-law even went as far as to tell me that I’ve made up my issues with fragrances and the migraines I get from them to control her brother. (He’s switched deodorant, detergent, stopped using cologne, etc.) It makes me sick that I’m now related to this woman.

I’ve dealt with people telling me it’s their right to wear whatever they want to wear and how dare I ask them not to. I just really don’t understand how anybody can have this attitude towards somebody. I really think it’s sad that people are so mean, ignorant, and inconsiderate just because they can’t understand what somebody is going through and choose to do what they know damn well is making others sick.

The section about me and my world brought me to tears. I sometimes feel like I’m totally alone. It’s nice to know that somebody gets it.

My dad and my aunt, but they’re not as bad as I am.

I view the usage of fragrances like smoking…. if you want to smoke, fine, but make others breathe your smoke in as well. If you want to use fragrances fine, but not in public places where everybody else around you is forced to smell it.

I wish more people would view the situation this way…. or at least not use the whole damn bottle every morning!

Barbara

Food Allergy & Chemical Sensitivity Expert Consultant | Natural help for allergies, ADHD, & asthma. | Loves to cook & create.

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14 thoughts on “Another Sad Story”

  1. “people are so mean, ignorant, and inconsiderate just because they can’t understand what somebody is going through and choose to do what they know damn well is making others sick.”‘

    Unfortunately, you are so right about this. I also have similar issues to yours and I am mad as hell all the time.

  2. I am going through the same thing at work, they recently put up scent free floor signs, it was taken by some as a challenge, these are people who are 40 and over! I was in tears today, they have a “choice to wear it, I don’t have a choice to breath it at work. I love my job and I am good at it, I don’t know where to turn

  3. I quit my job because people wouldn’t quit wearing it. When I asked for an accomodation, women start wearing even more fragrance. I could have taken it to HR but the job wasn’t worth it so I just quit. Wouldn’t have wanted to work with people like that anyway. Maybe some day things will change. Maybe we can change it by educating people like what we are doing here on this website.

  4. I had to leave my position and haven’t been able to find work because of this epidemic of “extreme smellines” we are in the midst of. You are right, people not yet sick with MCS/related conditions are taking this as a challenge to wear more. This is an air quality issue, like smoking. Unfortunately we are worth more to the health care industry chronically ill than we are when we are well. There are places that have successfully implemented policies against blocking access for those disabled with MCS. To the best of my knowledge, it is considered a FEDERAL disability category -hard as hell to get a claim going,(& I’m not interested in getting free$) but perhaps legislation could be initiated for ensuring access at least to public places. Anyone w/ideas? A brave little town I know of that is implementing fragrance free areas in town is Shutesbury, MA, see their website. Go Shutesbury!!

  5. 🙄 Its truly a shame what all of us go through. Its unfortunate that we have to learn to live with this. It makes the thought of moving to Nova Scotia sound even better. I would say don’t give up hope, but there are days I don’t have any left either.

  6. I thought I’d leave a little note or hope – it seems household & personal chemicals are getting some recognition due to their endocrine & hormonal disruption effects. This has been known since the 90s, but we’ve been thru an anti-science period politically… Anyway, because of the potential for laundry & cleaning products to turn MALE fish/amphibians into hermaphrodites, attention is being paid to the bisphenals, formaldehyde, etc in common products being use near our KIDS. Maybe someone concerned about rising school taxes needed to supply individual teachers to every autistic/learning/behavioraly challenged kid in the class? And why so many kids are now uncontrollable/unteachabel w/o extreme intervention? Anyway, I heard an article on NPR’s ON POINT show on 7/6 about this, probably based on the book “Our Stolen Future”, that actually got off pollution in foods, and had some dicussion about household toxics, incl. perfume. A start. All the callers were so thankful for some time spent on the
    Next Plague. We need to write in en mass & thank him for coverage, and ask for more. We need no to be invisible & silent. For the future generations, as well as ourselves.

  7. I have the same problem you have. Migraines almost daily triggered by chemical fragrances. I have been trying for months to find info on a link with my migraines and living next to a paper mill in Maine for 10 years. I have always thought it was the cause of my migraines.

  8. I have also some migraine attack but not as sever as yours. I’m not that sensitive to fragrances, though smelling too much makes me feel dizzy. But what I think that triggers me most when I get an attack, is when I am overly stressed and pressured during work deadline and when I have my menstrual period. It lasts for 4 days and almost makes me bedridden for those days.

  9. This is NOT in you’re head, this is real !!!

    I’m so sorry you’ve had the three HPV-vaccine’s, Gardasil.

    You need to detox !! First of all, you need to know what’s in Gardasil. See: http://www.EU2009.Come2me.nl

    You’re higly sensitive and you need to learn more abou that. Vaccine’s don’t do you any good at all. On the contrary: they don’t give you’re body the opportunity to “grow”.

    You’ve had a enourmous amount of: polysorbate80 (very toxic), formaldehyde(very toxic), thimerosal ( =mercury and very toxic, aluminiumhydroxide(very toxic)
    and more very toxic stuff injected in you’re sensitive body.

    http://www.dnaindia.com/india/report_cancer-vaccine-programme-suspended-after-4-girls-die_1368681

    Beware off the up-comming flu-vaccins. They also contain very, very toxic ingredients. Just Google on the ingredients I just mentioned, than Google on patent-applications and see, there all in the vaccine’s.

  10. Does anyone especially have problems with the laundry products (detergent, “fabric softener,” “dryer sheets”)? The newer products with lingering chemical scents are literally killing me from secondhand exposure. I agree with everything that I am reading here in this blog.

    1) Has anyone started a Facebook group addressing particular products, like laundry or “air fresheners” like the “bring back the old Pampers” campaign on Facebook. They are now involved in a class action lawsuit.
    2) have you reported your complaints, including medical, to the U.S. Consumer Product division?
    3) have you reported your complaints, including medical, to the companies who manufacturer chemical fragrances, like Proctor and Gamble?
    4) has anyone pursued litigation with respect to these products?
    We would like to hear! Thanks.

  11. Hello, I really hear you. You are really not the only one who got poblems with fragrances, I got asthma and I also get sick from perfume, and your sister in law really owe you and appology.

    Seam like you fit the discrition. Check in at:
    https://www.facebook.com/#!/groups/165937546800346/
    To meet more that have the same problem as you.

    Norwegian groups:
    https://www.facebook.com/#!/groups/141418939289210/
    https://www.facebook.com/#!/groups/148872935129158/

    Swedish groups:
    https://www.facebook.com/#!/groups/194624760146/

    You find me at:
    http://anneliemolin.wordpress.com/2011/10/17/the-backside-of-asthma-and-allergies/

    There are millions of people around the world that have a problem with perfume.

  12. I could go on and on about my experiences (I been intolerant for over 20 years now). I’m finding ways to talk and be heard and more of us that speaks up, the more “they” will understand how serious it is (it’s not just in our head). Please speak up. When you have a job interview or a meeting, tell the people that you are allergic and bring alcohol to give as soon as you smell something. They sooner you speak up when you met new people the more they will care (or a least make an effort). When I book an appointment I remind the person to tell all staff not to wear scented products. Doesn’t work all the time but sometimes it does and my dentist stop wearing cologne!
    If all of do this, someday we’ll be able to go in public (mall, bus, at work, etc.) without the constant worries and headaches.

  13. You make very good points, Willow. And as we speak up, we inspire others to speak up. It’s interesting to me how often I meet others with similar problems. I only find out once I tell my story though. We should NOT be afraid to speak up!

  14. I agree with everything in this article, I have the same issues. I am still very sensitive to all fragrances, and I can smell people’s deodorant and laundry detergent, even scent that clings to them after they went somewhere with a plug in or deodorizer. there is no possible way for me to be accommodated because other people can’t smell what’s on them in order to get it off them before they are around me. so I can’t go anywhere or do much. I’m on SSDI. I used to have terrible reactions, but I don’t anymore usually as long as I get away soon enough. what made the difference? I had jaw surgery for my sleep apnea, and this led to a decrease of my intracranial pressure. I had intracranial hypertension. it causes all the symptoms that the woman in this article had. and guess what one of the medicines used to treat it is? Topamax. this woman had intracranial hypertension and she got better from the Topamax, and she and her doctor never even knew it. I believe that MCS is simply a variant of intracranial hypertension. I proved on a spinal tap that exposure to deodorizer chemicals increased my intracranial pressure. acutely. I don’t believe MCS is from chronic body burden. it is triggered by a significant acute exposure and perpetuated by constant exposures in this toxic world. intracranial hypertension can be triggered by medications like Accutane or tetracyclines, many others. probably fluoroquinolones. I have suspected the HPV vaccine as well. no one wants to do spinal taps, so there are so many who go undiagnosed. the acute exposure damages something, maybe the blood brain barrier? then we have to avoid recurrent exposures. people with intracranial hypertension have all the same sensory problems that we do, but having been diagnosed by neurologists, they go down a different pathway and the neuros ignore all the other symptoms besides headaches and vision loss, so they don’t even pay attention to the fact that almost all IH patients have severe odor hypersensitivity. up to 50% of cerebrospinal fluid drains out of the skull through the cranial nerves, and most of that goes through the olfactory nerve. so if pressure is increased and flow through that nerve increases, it’s not a surprise that the sense of smell is so affected. stop going to alternative doctors, go to a neurologist and insist on a spinal tap, and then insist that you get your pressure drained down to 15 cm water or below, and see how you feel. if we can get MCS re-categorized as a real neurological condition, it will make a big difference for us socially. put those naysayers who say we are crazy in their places. don’t you want an objective test that can pinpoint what the actual problem is?

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