gertie Posted July 18, 2011 Report Share Posted July 18, 2011 I know I've posted about this before but I need your help again. I will begin by saying I do have a good family & am trying not to alienate them by being a nag about coming in my home reeking of perfume. I've bought them unscented laundry detergent, hair spray, soap etc which they will use until it's gone & then it's back to the same old stuff. It's their life & I can't tell them what to do. When they're here I just suffer knowing I will have a migraine or sinus inf from being exposed to fragrances. They came in yesterday, I had a migraine in the afternoon & have been sick all day. They came again this afternoon so I know it is going to be another migraine tonight & the exposure makes me really nervous & feel like crying. It's not a new thing, this has been going on for 25 + years. They've been told time & time again how sick this makes me. I can't move because anywhere I go there will always be someone that reeks of perfume. When I read this back I sound like a pity party.How do you handle a situation like this? I've reached the end of my proverbial rope.Thanks. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 18, 2011 Report Share Posted July 18, 2011 I have the exact same problem. It's BAD, reallllllly bad. It makes me so sick. I have asked relatives not to wear perfume, cologne whatever and either they still wear it or even when they don't, it's just all in there stuff - so they stink anyway. It ruins my time with them. And I pay dearly for it sometimes into the next day or two. I'm sorry I don't have advice... all I can do is empathize on this one. What I want to know is WHY we are like this and what does it have to do with POTS? I haven't found any good research on MCS that gives a good biological explanation for this. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 18, 2011 Author Report Share Posted July 18, 2011 Thanks Naomi, I'm not sure why we're like this but I hate it too. I have migraines & seizures & know that most people with these are sensitive to odors. I think it's just part of autonomic nervous system dysfunction. What irritates me the most is when people with the fragrance lie to me & say they don't have any fragrance on. Life with dysautonomia is bad enough without having to deal insensitive jerks. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted July 18, 2011 Report Share Posted July 18, 2011 Alicia, have you read about this:http://en.wikipedia.org/wiki/Toxic_encephalopathyEdited to add this too - there's a lot of information here (unfortunately no cure):http://www.thecanaryreport.org/category/therapies-healing/ Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted July 18, 2011 Report Share Posted July 18, 2011 I have been sensitive to fragrances for years and also avoid them in my own home. I was at a wedding Saturday and the woman in front of me had tons of (awful) perfume on and I thought for sure I'd get a bad headache, but didn't. Reactions to fragrances and other chemicals are very common in people with mast cell disorders, and since I have been taking MCAD meds my reactions have decreased - just thought I'd let you know. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 18, 2011 Report Share Posted July 18, 2011 Ah yes, but what a fight it is to get that magic gastrocrom.... It is so expensive about 800 a month. Most Insurance companies won't pay for the cream either. I finally got the oral solution approved and Trader Joe's makes a face cream without fragrance and is gentle. First cream that does not make my face break out. It is called "enrich," moisturizing face lotion SPF 15 you can go to the Mast cell web sit and get the recipe for making your own cream with the oral solution with this cream. I also bought their other cream that they sell at the cashier in a pump bottle. It is also unscented herbal blend with aloe. It is called, " Midsummer Night's Cream," it's a thicker and I'm going to use it for the all over body cream with the gastrocrom oral solution in it as well. The solution is hard on my body when I have to drink it, but really helps reduce the itching episodes. If I can get it into me in as the cream I would rather do it that way. I'll be playing chemist this weekend as I need to get some containers to store it in. It's funny about the scent thing. I used to go nutty over certain perfumes. Love to wear ones that agree with me and love to smell cologne on a man. My ex would never wear any. His loss. Now I've either lost most of my sense of smell or all of the allergy stuff is working. I would hate walking down the perfume aisle in a store, wher they attack you with the perfumes and colones. I would try to gently try to step back from sprayer saying " No Thank you I'm allergic, Please don't spray me." I believe I'm the reason they spray on cards and give them to you now. LOL!!!! I used to get a lot of samples that way ~ HA BellaMia ~ x's Quote Link to comment Share on other sites More sharing options...
gertie Posted July 19, 2011 Author Report Share Posted July 19, 2011 Thanks everyone for your support. Naomi, Thanks for articles. I do have MCS that started about the same time as Dysautonomia. I had toxic exposure to pesticides several years ago. I also spent many hours over a 3 mo period at Dr Rea's EHD clinic being tested for allergies, using the sauna, learning what to eat & avoid. Of all the treatments I've tried it seems I had a negative reaction to most everything. As someone said nothing is a cure. Quote Link to comment Share on other sites More sharing options...
gertie Posted July 19, 2011 Author Report Share Posted July 19, 2011 I have been sensitive to fragrances for years and also avoid them in my own home. I was at a wedding Saturday and the woman in front of me had tons of (awful) perfume on and I thought for sure I'd get a bad headache, but didn't. Reactions to fragrances and other chemicals are very common in people with mast cell disorders, and since I have been taking MCAD meds my reactions have decreased - just thought I'd let you know.[/quoteSarah, I've been reading more about MCAD & the symptoms are very familiar. Is genetic testing how you were diagnosed? Is L carnitine supplements the only med for MCAD? thanks very much. Quote Link to comment Share on other sites More sharing options...
jenwic Posted July 21, 2011 Report Share Posted July 21, 2011 I have a lot of problems with scents too. One thing that bothers me a lot is fabric softener. I have switched to fragrance free, but when I am in public and walk past someone who has used scented fabric softener my throat feels tight.I also have problems with shampoo. Does anyone know of a good shampoo that doesn't bother them? Quote Link to comment Share on other sites More sharing options...
gertie Posted July 21, 2011 Author Report Share Posted July 21, 2011 jenwic, I use Magick Botanicals oil free shampoo & other hair products. I order them from N.E.E.D.S. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted July 23, 2011 Report Share Posted July 23, 2011 I have been sensitive to fragrances for years and also avoid them in my own home. I was at a wedding Saturday and the woman in front of me had tons of (awful) perfume on and I thought for sure I'd get a bad headache, but didn't. Reactions to fragrances and other chemicals are very common in people with mast cell disorders, and since I have been taking MCAD meds my reactions have decreased - just thought I'd let you know.[/quoteSarah, I've been reading more about MCAD & the symptoms are very familiar. Is genetic testing how you were diagnosed? Is L carnitine supplements the only med for MCAD? thanks very much.Alicia, I am still in the process of getting diagnosed - blood and urine testing for mediators as well as bone marrow biopsy. However, the medications I take help - the anti-histamines and Gastrocrom are for MCAD. Quote Link to comment Share on other sites More sharing options...
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