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PERFUME!!!! (Read 27519 times)
Lisa
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PERFUME!!!!
03/16/11 at 14:49:54
 
I've listened to others tell their stories about people with perfume and felt so awful for them and all the while so thankful that this didn't seem to be one of my problems.    Well, NO MORE!!

My son used a new cologne today that my sister had given him on a recent visit and it was the first time I'd smelled it.  I've NEVER had a reaction to perfumes before, but this one did it!!  He needed a lift down the hill to the bus and I got into the car with him for only a few brief minutes, but we weren't in the car together more than a minute when my stomach began to turn and ache right away and I began to wonder what in the world was happening!   I have been able to use perfumes and have never had a reaction to even those which others have used other than perhaps an aversion or a headache.  But I've had that since I was a kid and it didn't change once the masto came around.  So I wasn't expecting to react to this perfume.  But react I did!  By the time my son was out of the car and I'd turned it around to return home, no more than 3 or 4 minutes had passed if that much.  But I began to feel so incredibly weak and I began to wonder if I could even get back home but then I thought, What else could I do but to keep going and GET HOME!!   So I went home and parked the car, left it totally opened and called for my husbands help as I got in the door.  He realized that something was wrong and began getting my antihistamines.  Yet, my stomach was so upset and I'd just finished eating my lunch and had taken my son to catch the bus while my husband finished his lunch.  

This was the first time I've even had vomiting as part of my symptoms and although that's pretty extreme for me, it was such a relief in a way and then I was able to take my medicine and lie down.  But the symptoms were progressing and I had to hold on tight while I was waiting for the dyspnea to stop and for the malaise to pass.  But then I fainted, which is my normal. I had looked in the mirror and I looked like Rudolph the Red Nosed Reindeers Mama, the way my nose was such a bright red, My neck and chest were also flushed, but I'd never seen my nose so red before!!  Yes, IT GLOWED!!! Shocked  My husband came around to check on me cause he knows that fainting is one of my symptoms and he woke me up and after talking with me for a bit and helping me to keep consciousness I realized that although my symptoms were under control for the time, I really needed to crash out in bed and stop all physical activity.

Yet although I slept, I didn't sleep well cause my racing heart work me up!  My pulse in my arms and in my neck were such that they sent vibrations through my body!   It was impressive the strength of the reaction that perfume had caused!!!  Just impressive, cause when I woke up, my stomach was aching again, so I took an omeprazol and a ranitidine and THEN finally my stomach calmed back down again.  

Well, all was fine until my son returned home from college this evening.  He barely stepped into the room to say good evening and the waft of the remants of his perfume came my way and suddenly my stomach began to double up again and I could feel that malaise as well!  It was almost immediate the return reaction!   It absolutely shocked me the speed and strength of this reaction and it's frightening how quickly it began to overtake me.  

Well, my poor son, he'd not any idea of what had happened after I'd dropped him off and he was a bit confused, but when he realized that it was the perfume on his clothes he took them off and put them in the wash and that perfume went right into the trash!!!  Whew!

Never again do I want that to happen again, but unfortunately, from after hearing others go through what they go through and having experienced it now, I'm hoping that this won't turn into a permanent trigger.  But I will from now own be a great deal more careful with perfumes, that's much is certain!!! Shocked

Lisa
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Joan
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Re: PERFUME!!!!
Reply #1 - 03/16/11 at 18:12:34
 
Lisa,

Oh, my!!!!  I do get flushing episodes with tachycardia and weakness from colognes and perfumes, but only if they are artificial scents.  And, also from perfumes in cleaning products, fabric softeners, scented candles, potpourri, etc., if they're artificial.  Years ago, my allergist told me not to go down the detergent aisle in the grocery store!  When we travel, I have to call the hotel ahead and ask them not to use carpet or air fresheners in my room.

Sorry, but I had to laugh at the visual about your nose, even though it's not funny at all, and it can come on so fast.  So glad you made it home and your husband was there!

Wondering if your base meds are sufficient for this time of year, if you're reacting a lot and to new things.  With the heat there, I'm sure your cup of triggers is pretty full all the time.  I can just imagine being hot and smelling that....   Well, glad you made it through and feel better.  Hope it was just a fluke and won't happen again.
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Lisa
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Re: PERFUME!!!!
Reply #2 - 03/17/11 at 01:07:08
 
It was pretty crazy, Joan!!  I'm still reeling over it and feel like my olfactory senses have been over dosed by smells!   My stomach was a bit queasy this morning and I can tell that my system is on HIGH today.  Yet yesterday was a bad day for me and I had begun the day racing to the bathroom for reasons I can't understand.

The weather has cooled down finally and we've got a delicious cold front parked on top of us right now, so this isn't a factor, but I'm tired again - the school year just started up and I've been pushing myself too hard due to the fact that I need to get the year rolling, so I've been doing more than I can handle and I can tell that this is a factor.  This is why I began reacting yesterday.  My bucket was already full and tipping over the edges when my son sent me into OUTER SPACE!!!   And so when he came home at night, just a brief whiff of that perfume again began setting me off immediately!!!  

Yet it was just the fact of how fast it all began to chain react on me is what just amazed me for I honestly didn't expect it at all!  I don't have these issues with smell - or at least I didn't.  But perhaps it was just a matter of time that I would become sensitive.  Only time and experience will teach me, but at least by being aware of it, it will be easier to identify the next time!!!

I'm better now, however, so no worries!   Thanks!!!

Hugs
Kiss
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Re: PERFUME!!!!
Reply #3 - 03/17/11 at 05:58:32
 
I worry about smells becoming a problem too as sometimes I'm okay with them but other times they make me feel horrible. In fact, I've removed most of them from the house except my boys do wear cologne.  I have imposed on them an outside only rule so my oldest puts it on in his car. Needless to say, I cannot stand to get into it which is maybe his goal in the first place.  We have a no "smelly" stuff rule at work prohibiting several different irriants and I'm amazed at the fact that people still pour it on. The past two days the ladies restroom smells like Bath and Body Works everytime you walk into it.  This is very detrimental for masties as well as the general public that have sensitivies.
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Re: PERFUME!!!!
Reply #4 - 03/17/11 at 06:04:49
 
I can relate, I can still wear some perfumes but very little. I love fragrance, even worked at a major deptarment store at fragrance counter selling and sniffing and spraying perfumes all day. I can't have perfumed room sprays air freshners, candles anymore. It sucks!
I find if I stick to natural perfumes that are light, I can sometimes even tolerate. I'm allergic to orris root and it is used in many perfumes and in toothpaste. Strong scents really bother me, I'm finding now I can't even walk through the lumber section at Home Depot, not sure if it is the chemical treatments on the wood or the glues or their pollen that bugs me. I'm allergic to so many different trees. Lisa- I'm sorry you had such a reaction, thats hard because you could be out in public and someone could be wearing tons of perfume and you can can't control that.
Melissa
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Joan
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Re: PERFUME!!!!
Reply #5 - 03/17/11 at 11:08:25
 
Hi Lisa,

  It sounds as though you've figured much of this out already.  It's so disconcerting when another trigger rears its ugly head!  It may have been a trigger always, but you just didn't get any exposure to it until now.  

  One thing to check is whether your nasal passages are raw or irritated or red.  You can check your conjunctiva, too.  That rawness can cause worse reactivity to environmental irritants.  If you're changing seasons, there could be rain or dust or mold that is irritating, and therefore causing more intolerance for other inhaled things.  Weather fronts definitely affect auto-immune problems.  (It's you and Heather who have the auto-immune variant of masto, isn't it?)  And, none of these need be a true allergy.  They can just be irritating enough and cause that extra inflammation and your bucket overflows .

  Besides how much room is left in your personal trigger bucket, exactly what was in the perfume might be important.  Generally, perfumes made from petroleum products cause symptoms in more people, but there can be other irritating ingredients, too.  If your bucket wasn't as full, you might not have had as much of a problem or if you hadn't had as much stress....  There's no way to know for sure.

  There's also a direct connection between the nose and the limbic system, and that may have something to do with reacting to smells.  In the past, I've read some articles about that.  

  Another smell to watch for is vinyl, for example in shoe stores that carry vinyl shoes and purses.  That's probably not as much an issue in Brazil as it is here.

  This is a reminder for all of us to carry our meds with us, no matter how short the walk or drive or....  Episodes can come on suddenly, when we least expect it.  I now keep mine in a small pack with a strap on it, so I can take out of my purse for walks or throw it into the car if I'm running out for a minute.  That helps make it easier to be sure I'm prepared.

  Most of all I'm so glad you're okay!    Smiley
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Josie
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Re: PERFUME!!!!
Reply #6 - 03/17/11 at 11:20:32
 
Hi Lisa ,

Hugs sweetie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Perfumes of only certian types bother me . A patient at my GP walked past me and I itched , flushed ++++ and my heart went fast . I had some piriton and then a second dose 5 mins later and I settled .

Joan ,

The vinyl thing interests me has I had a random reaction in august 09 in a diy store . the symptoms started in the paint isle and ramped up in the vinyl coving isle . So maybe .................................... By the time we got to to the till I had a syncope and if I hadn't been sat still would have dropped .

The nasal irritants is also interesting for me as my minor allergies to cats , grass and house dust open me up big time and Joans comments are so logical to me Smiley I am in spring so my risk is high. So being very careful xxxxxxxxx

many hugs
Josie
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Joan
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Re: PERFUME!!!!
Reply #7 - 03/17/11 at 16:52:39
 
Josie,

Do you know about bed encasings and other things to do to limit allergen exposure?  Most of us are so sensitive and our trigger buckets so full most of the time that even minor allergies can send everything spilling over.  If you (or anyone else) want info on environmental measures to reduce allergens, let me know.  There are some easy things that might help.

Vinyl is awful, and it's a big problem in newer cars, too.  Other possible problems can be from new mattresses and other furniture, even fabric, as it is sometimes treated with chemicals to become more stain resistant.  Urethane finishes on wood products, new synthetic countertop materials, and more can be problematic.  In the building materials store, the composite wood products have binders and chemicals in them that can be triggers.  Even plywood does.  Paint with high VOCs aren't good.  

The best thing if you get exposed in a store is to quickly step outside and take some deep breaths to clear yourself of the smell.  Then, don't go back in.

I do know that when we lower our exposure to high histamine food and other triggers, we're better able to tolerate other things.  I was considered IA for about 16 years before my SM diagnosis, and I had many 4+ reactions in my testing, so I had to do all sorts of things to avoid allergy triggers.
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Re: PERFUME!!!!
Reply #8 - 03/17/11 at 19:25:29
 
Sorry Lisa Sad....   You described my reaction to a T,  they vary depending upon brands, even natural things trigger me, but don't panic it may only be this brutal stuff that is triggering you. I've run into tons of people that are now not tolerating scented people with no other allergies/ or mast cell type of issues. These colognes are way too potent, I swear theres a nerve agent in them!  There are just a lot of newer colognes that I swear have something major in them, like you said it's seconds to barely minutes before I'm a gonner. others I can get myself out of the area and medicated as I smell and feel it, I might get the headache and chest itching and weakeness but not total crash like a lot of the new stuff. You will probably be wiped for a day or two after this one. They are putting the brutal stuff in hair products also. Eveyone I guess wants to smell from 10 miles away. Stay doubled up on everything for awhile your bucket is now full for a bit.  Hugs
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Re: PERFUME!!!!
Reply #9 - 03/18/11 at 05:11:46
 
Josie- I have to agree with Joan about incasing your mattress(if you already haven't yet). For me doing that getting rid of the carpet in my bedroom and getting an air purifier to run at night helps me a ton.
Also irrigating my sinuses regularly helps. Yesterday I was cleaning the bathroom and I started to get a headache so I irrigated the sinuses and headache was gone.
I really gotta find some better cleaning products, it seems that most of the natural stuff I buy isn't doing the job.
Melissa
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Josie
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Re: PERFUME!!!!
Reply #10 - 03/18/11 at 07:46:44
 
Hi Joan and Missy

Thanks Wink . My fans extract a lot from the air , but i have been looking at air purifiers . Time to make the purchase Smiley

I will encase my mattress , I have all other hypoallergenic bedding . Pillows encased . My hepa filter hoover is making a huge difference .

My next property will be carpet free . i rent so I can't take up the carpet . I am leaving here in a few months as my landlord would not sanction adaptations at my expense that I need . So I am off . So my next home will be long term so I will take up the carpet and replace it .
I have removed the stuff from under my bed as it was building dust .

All help gratefully recieved , my bucket is nearly full and i am ready to go .

The windows are closed in the day and only opened at night .

I haven't been back in the DIY store . I was lucky i was in a wheelchair , otherwise I would had collapsed .

I haven,t been in a supermarket for 18 months or any store selling food . My body is just to reactive. My last visit was Dec 09. I only just managed to get meds in before I got really poorly .    

I order online so only experience safe foods .

Cleaning materials have been a challenge . I can do no vinigar based ones . Currently only disinfectant and bleach pass . i don't use them . The vapour is ok .  Something used in 2 supermarkets here in their chillers to clean is instant , flushed skin as soon as I touch anything .

Personal products wise - sodium leureth sulphate is a big trigger for me . I use SLS free and paraben free . Only one  tooth paste here is safe - sensodyne pronamel . I can only use one brand of soap due to gelatine .

My early symptoms were from inhaled products in the shower . I now have cool showers and baths making sure I rinse very throughly .

I only wear cotton clothing , as anything else is irritant xxxxxxxxxxx

Writing this has made me realise how many things I have changed .
many hugs
Josie
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Re: PERFUME!!!!
Reply #11 - 03/18/11 at 08:02:35
 
Lisa, Im so sorry that happened.. as if you dont already have enough problems to battle with this disorder!  I used to be a "Victorias Secret perfume" fanatic. I grieved when I threw it all out lol.. but I felt better too!

I can still "do" some of my scented candles. I used to LOVE different good smells.. now I avoid most of them.

Josie, one tip Hon.. windows open at night might actually be a problem --that is when the air is thicker, heavier and will hold more pollen and other irritants in it.. Can you try AC, maybe just on fan--circulate??  I hope youre feeling better soon...I worry bout you.

Hugs to all,
Ramona
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Josie
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Re: PERFUME!!!!
Reply #12 - 03/18/11 at 10:02:05
 
Hi Ramona ,

Thanks Smiley Every tip helps .

I have fan on permenant agitate day and night . It picks up a lot of dust , so I am not breathing it in . An air purifier is my next purchase , probably this evening . the last 2 springs have been horrid  

I know I worry too . My 999 calls 9 recordings ) and paramedic paperwork  should be here next week and I can embark on my next push armed and ready Smiley I hope its monday as I see my GP and if I can give them to him then it would be a bonus . if not I will get them ( a copy ) dropped to him . My plan is hassle the secetery until she moves my appointment forward . The specalist will also recieve a copy as my friend is working in the hospital so they will be delivered personally to avoid them getting lost .

It will include a list of notes for them to request to get the whole picture Smiley

doxipin is on the list next , but I feel concerned . Any thoughts ?

many hugs
josie

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Re: PERFUME!!!!
Reply #13 - 03/18/11 at 10:55:57
 
Hi Josie Smiley
Doxepin is one of those things that either you do really well on it or you stop it quickly. I have low seritonin and doxepin isnt good for people with that--I tried it for 3 days, got very depressed and had nightmares, so I stopped it..BUT, I know there are  very many people who do good on it.. You just have to try and see which group youre in.  I am praying it helps you Smiley
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Ramona
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Lisa
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Re: PERFUME!!!!
Reply #14 - 03/18/11 at 15:28:54
 
YOU ALL ARE SO WONDERFUL!!!   HOW NICE TO GET SUCH A WONDERFUL RESPONSE!!!    Cheesy  THANK YOU!!!! Kiss Kiss Kiss


I'm back to my normal once again and thankful that I don't have this happen on a regular basis!!  It was frightening because it happened so very quickly and without notice nor expectation and it shocked me.  I had to keep a low profile yesterday too and even today cause I know I'm still recovering from it.   According to my masto doctor it takes our mast cells 3 days to recover from such a show, and this is why we end up having continued triggering or being overly tired and so I know I've got to still be careful.   But I'm getting back to my normal and am doing much better.   And, to make sure this episode doesn't repeat, I went and got the offender and threw it away!!!   WITH GLEE!!!   It was one trigger that I definitely had control over!!  Well, at least that known trigger.  Now whether or not any other perfume's end up triggering me in the future, only God knows!  I've noticed, however, that I feel very sensitive since this as to smells - it's like my nose feels like's it's 3 or 4 times too big and although it's not red and I'm not reacting to any other perfumes, it just feels like it's horribly sensitive now, much like an area of skin remains sensitive following surgery.  It isn't that there is any real problem there, it's just still "feeling" it and until it calms down again I've got to be careful with it.   Weird!!

Thanks so much for your suggestions and input!  I really do appreciate it!   Yet, this is what is so interesting in that I'm not at all allergic even to dusts and things!  My IgE levels are so low that they shocked my allergist!!  She's never seen such low levels before for I'm a foreigner and I didn't show the allergy levels of the people who live here since so many Brazilian's are a much more mixed race of people that we American's are.  There's a great deal of native Indian and African influences that go back the 500 years of the country's history and being from the States, I'm pretty much pure caucasion and so I didn't match up with the normal readings that she's accustomed to seeing here especially since we live around the largest steel mill in Latin America.  There's always a ton of allergic people and my kids and husband are much more allergic than I am and this really surprised her, especially to see how allergic the masto has made me.   So, this is what so took me by surprise for I'm one of those fortunate masto patients who don't react to the foods, or smells, or various things that so many of you do react to and I've thanked my lucky stars that I've not had these issues at all, yet when this hit me the other day, it really took my breath away at the force of it as well as the speed of it!   It almost left me helpless and what shocked me was the obvious trigger of it!!   Even my family complained about this perfume in that it was suffocating even for them!!  

You know Josie, what you said about the new perfumes being so much more potent!  This was a perfume which my brother-in-law bought in Ireland.  I wonder if this has something to do with it!   The name of is is Comme des Garçons.  I've Googled it and it's a Japanese based company and from what i can see, I have a feeling that it's pure synthetic!!!   It's definitely STRONG and STINKY and it's HISTORY IN MY HOUSE!!  

Thanks again for the WONDERFUL support everybody!!  I REALLY APPRECIATE IT!!

Hugs!!

Lisa
Smiley


(I just love this bouncy guy!!!)  It's how I am when I'm feeling GOOD!)

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