Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Welcome to our forum.
  HomeHelpSearchLogin  
 
Pages: 1 2 3 4 
Send Topic Print
PERFUME!!!! (Read 27765 times)
Sandi
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 205

Re: PERFUME!!!!
Reply #15 - 03/18/11 at 18:02:16
 
Isn't it funny Lisa how elated we are the day after we survive a near death experience! I can be exhausted yet happy as a pig in nasty goo! Cuz I lived through another close one! So glad you are feeling better.
My DH has said man you are like a drug canine, you can sniff it /feel it before anyone, I can tell you what fluid is leaking from a vechicle, if theres a leak of something, when one mold spore is the culprit. Had a girlfriend take me to her house one day to find the terrible smell....... I walked in the room and said it's a multivitiman.... she looked at me like I was nuts, I then within minutes found it under her bed she had been stashing her daily vitamins she was supposed to be taking and the recent humidity in the air made them "moist and poofy" Hence the odor  Cheesy Luckily that didn't make me sick!!! So glad you are on the mend again!!!
Back to top
 
 
IP Logged
 
Riverwn
FORUM MODERATOR/ADVISOR
*******
Offline



Posts: 993
Gainesville, Florida
Re: PERFUME!!!!
Reply #16 - 03/19/11 at 07:10:08
 
Lisa, I think this is a GREAT example to people that once we figure out our triggers, we cant stop.. our condition is ever changing and we need to remind ourselves that things we didnt react to before may be the culprit in the future.. to keep aware and safe Smiley
love to all
Ramona
Back to top
 

~~~Count  Your Blessings!~~~
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: PERFUME!!!!
Reply #17 - 03/19/11 at 16:37:25
 
Sandi,

Me, too!  I am really good at noticing natural gas leaks and have saved more than one person from serious health problems or explosion from a leak no one else could smell.  Having such an acute sense of smell can be lifesaving for myself, too, with the mold allergies I have, but on a day-to-day basis, it's kind of a curse.  There are so many bad smells to gag over out there!!   Tongue

Lisa,  Are you better by now?  Hope so!
Back to top
 


Joan
 
IP Logged
 
Kim
Guiding Light
***
Offline



Posts: 137
Rapid City SD
Re: PERFUME!!!!
Reply #18 - 03/20/11 at 07:26:34
 
Lisa;

   I am so glad to hear you are up and running again.  I am so sorry for the difficult time you went through.  That must have been scary.  That is one of the scariest things about this disease for me.... not knowing what will trigger one time and not another.  That is what is making it impossible for me to figure out most Brie's triggers. When she is triggering pretty much EVERY day how do I narrow it down???  Frustrating....  

                                                                  Kim
Back to top
 
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: PERFUME!!!!
Reply #19 - 03/20/11 at 09:19:51
 
Hi Kim!

One of the things I've noticed, and we've talked about this before, is that we can get into what we call the vicious circle of triggering.  There are some of us who have some other element involved, like me, which is caused by IgG reacting.  I'm a proven autoimmune patient and so I'm allergic to myself and I believe that this is where some of my unknown triggers come from.  But this is not what I'm talking about when I talk about the vicious circle of triggering.  Hmm, I wonder what name we can put to this...Perhaps something like Mast Cell Cycle Triggering might be a good name.

Anyway, this kind of triggering seems to be created by the mast cells themselves being triggered.   My dermatologist explained some of this to me in a simple form as in describing the Krebs Cycle.  This is a somewhat complex cycle which involves chemical reactions and the use of oxegen and produce energy and that this entire process has a great deal to do with our metabolism and our cells and involves the mast cell due to how much the mast cell's mediators are used within the body.  

She explained to me that when we tend to run low of energy, this cycle tends to cause mast cell degranulation, and the problem is that this degranulation uses up energy as well and since our mast cells are so involved and sensitive, they over react which thus causes too much degranulation which in turn uses up too much energy and thus triggers more degranulation for the degranulation part is needed to help boost the energy but in us, due to the overreaction, we are instead depleted quickly due to the fact that our bodies are overloaded with all of the mediators being released.  This is one of the reasons why we get so exhausted so easily and why it affects us so much and how it becomes such a vicious self feeding cycle.  This is why we have to diminish our physical activity, sleeping more, resting more, and why we need to take more meds so as to help CUT this self feeding situation.  

This is why we are so affected overall, our systems have been depleted but we have no way to stop it.  This is when we really get into trouble for the more we are like this, the closer to the "edge" we live in that our bodies are always on the verge of anaphylaxis.  

This is why it's so very important to work with your doctors and keep a close eye on Brie, trying to identify what known triggers you can so that you can cut into this cycle and bring it to a halt.  

I wish Kim that it were a matter of finding the trigger and avoiding it.  This is what you do with normal allergies and that's because those people who are IgE allergic, have but ONE PATHWAY for the mediator release.  For masto patients, those who are the proliferative/clonal patient, they have not a pathway which is triggering, but it's the fact that their mast cells are defective in their function and they have way too many of them triggering when they trigger.  There also may be pathways involved in the triggering, but science hasn't gotten that far yet.  

For the non-clonal patients or those who have some kind of autoimmune element involved, this is more complicated for although they have not proven clonal involvement, this means that they don't have way too many mast cells, but with them, its the issue  that their MCs are trigger happy, and this may be that they've got way too many pathways which are being triggered.   So far they know about the IgE pathway.  Heather's is a high affinity IgE receptor which triggers, so that's another.  There's also the IgG pathway, which seems to be one of mine.  They also know about complement and then there are the mediators which are more potent that histamine, that of stem cell factor and leukotreins and prostaglandins, and other mediators that they've not yet begun to understand.  So, there's a whole lot more involved in this triggering factor that the researchers are discovering which creates some of these issues.  

This is why, the quieter you can keep those mast cells, the better.

Lisa


Here's some information on this:


http://www.wisegeek.com/what-is-the-krebs-cycle.htm

The Krebs cycle refers to a complex series of chemical reactions in all cells that utilize oxygen as part of their respiration process. This includes those cells of creatures from the higher animal kingdom, such as humans. The Krebs cycle produces carbon dioxide and a compound rich in energy, Adenosine triphosphate (ATP). This chemical provides cells with the energy required for the synthesis of proteins from amino acids and the replication of deoxyribonucleic acid (DNA).

The Krebs cycle, also known as the tricarboxylic acid cycle (TCA), was first recognized in 1937 by the man for whom it is named, German biochemist Hans Adolph Krebs. His highly detailed and extensive research in the field of cellular metabolism and other scientific endeavors gleaned him the Nobel Prize for Physiology or Medicine in 1953. In short, the Krebs cycle constitutes the discovery of the major source of energy in all living organisms.

Within the Krebs cycle, energy in the form of ATP is usually derived from the breakdown of glucose, although fats and proteins can also be utilized as energy sources. Since glucose can pass through cell membranes, it transports energy from one part of the body to another. The Krebs cycle affects all types of life and is, as such, the metabolic pathway within the cells. This pathway chemically converts carbohydrates, fats, and proteins into carbon dioxide, and converts water into serviceable energy.

The Krebs cycle is involved in the second of three major stages every living cell must undergo in order to produce energy, which it needs in order to survive. The enzymes that cause each step of the process to occur are all located in the cell's "power plant." In animals, this is the mitochondria; in plants, it is the chloroplasts; and in microorganisms, it can be found in the cell membrane. The Krebs cycle is also known as the citric acid cycle, because citric acid is the very first product generated by this sequence of chemical conversions.


Back to top
 

Don´t forget, there is so much more to life than being sick!
 
IP Logged
 
Kim
Guiding Light
***
Offline



Posts: 137
Rapid City SD
Re: PERFUME!!!!
Reply #20 - 03/20/11 at 09:58:15
 
Lisa;
     Thanks for the explanation. As confusing as all of this is, it is starting to make more sense to me little by little.  I have recognized that stress, activity (through play, etc.), and overload (school, etc.) are definite triggers for Brie.  And the more compounded they are the more severe her symptoms get.  You and I can recognize this and take measures to slow things down a little.... but she is not yet old enough to fully understand this (although she is learning and beginning to recognize it).  I can recognize this in Brie and step in and make attempts to slow her down some, sleep more, etc.  But some of it is unavoidable for her as she has to go to school, and  I don't have it in me to tell her she can't play at recess, gym, or run around and play with her friends outside, etc.  That is no life for an 8 year old.  I am hoping that Dr. Castell's will be able to assist us with a medication regime that keeps things more stable for her! Well, I am off to work so we will talk more soon Smiley

                                                         Stay well, Kim
Back to top
 
 
IP Logged
 
Sandi
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 205

Re: PERFUME!!!!
Reply #21 - 03/21/11 at 06:46:00
 
Lisa awesome explanation to the crash hangover Smiley   Joan, maybe we should start a business, Sherlock Scent Women, we'll find whats bugging you Smiley
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: PERFUME!!!!
Reply #22 - 03/21/11 at 15:07:33
 
Great idea, Sandi!  It certainly might make the curse more worthwhile if we could make some money from it!

Interesting, though, that the better I feel, the less I notice smells.  When I'm flaring, almost anything can make me gag!

Back to top
 


Joan
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: PERFUME!!!!
Reply #23 - 03/21/11 at 15:46:35
 
I find that when I'm really going to it, everything turns super sensitive.  My kids sound as though their voices are as loud as Boeing 747 jet engines in full scream, the sun is so very strong inside my house that it hurts, I don't like to watch TV because the movement irritates me and gives me a headache and I can't handle the demands of my kids for how sensitive my "nerves" get - everything irritates me!  Yet I also noticed that my skin is sensitive, like when I take a shower, I can really feel it more!  

I can still remember after the 2nd CT I did where I had my first severe reaction.  The following day I was home and feeling absolutely horrendous - tremendous shakiness and nausea and diarrhea - the whole shebang!  Yet I was surprised as to how very sensitive I was to sounds and light and movement!!!!  This was the time period when we thought I was with the carcinoid syndrome so I was only on one dose of allegra a day!   I don't know how I survived it, I really don't!!!   This was when my angiologist, after I contacted and told her how badly I was feeling - she put me on prednisone and slowly my reactions came back under control!   Oh how miserable I was then and how good I feel in comparrison!!!   Smiley

But yes, all this mast cell activity sends our entire nervous system into overdrive and I begin to feel like "Mrs. Bennett" from the BBC Pride and Prejudice saying "OH MY POOR NERVES!"     hehehe!!! Grin
Back to top
 

Don´t forget, there is so much more to life than being sick!
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
The culprit? Downy and/or altitude?!?
Reply #24 - 03/24/11 at 17:04:45
 
Lisa,

Mrs. Bennett!!! LOLOL.  Funny girl!!!  But, for me, too, the sensitivity can be overwhelming!  My poor husband.  I have to ask him to whisper sometimes and to turn the lights down and the music's too loud, etc., etc.

I guess I jinxed myself talking about perfumes and scents.  Two days ago, we went to a bed and breakfast in the mountains, and they said they wouldn't have anything in our room that was scented.  They were very nice, and she didn't light any scented candles while we were there.  The soap was fine, too.  

BUT, they had used perfumed Downy fabric softener on the sheets and towels, and "hoped that wouldn't be a problem."  Of course we were miles from anywhere, and there was nowhere to move, and the wind was howling outside, and we were at 10,400 ft. elevation.

I knew Downy would be a problem, but thought I'd just try to make it through the night.  Oh, my, what a night!  Sad    I got up at least 8 times to pee, itched, drank a ton of water, took every kind of medicine (Zyrtec, Allegra, Benadryl, Zantac, Pepcid,  prednisolone, and some Ativan to take the edge off the pred)  Still, I woke up feeling like I was vibrating and looking like Raggedy Ann with hot, red cheeks.... and I'd even brought my own pillow!  We left as soon as I could pull myself together.

So, my question is....   How much of a role did the elevation play in this problem?  I know the Downy set my cup to overflowing, but I wondered if the elevation played a role, too.  Has anybody had a mast cell problem at high altitudes?

So today I looked up artificial scents and perfumes and found a lot of articles about fragrances, and none of it is good.  Here's a link to one article.  Even though the title talks about cleaning products, it's really about the fragrances.

http://www.rodale.com/fragranced-products

We may all be super-sensitive to VOCs (volatile organic compounds).  Several articles mentioned seizures occurring in people as well as allergic-type reactions and migraines from exposures.  I can attest that Downy causes mast cell degranulation in ME!

Would like to know if anybody has had problems being up high.  I suspect it contributed somewhat.  The weird thing about all of it, is that I didn't have any digestive disturbances at all!
Back to top
 


Joan
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: PERFUME!!!!
Reply #25 - 03/24/11 at 21:12:01
 
Soo, your husband relates to Mr. Bennet eh?
 
You take delight in vexing me. You have no compassion on my poor nerves.''

``You mistake me, my dear. I have a high respect for your nerves. They are my old friends. I have heard you mention them with consideration these twenty years at least.''

``Ah! you do not know what I suffer.''




I so love the irony of Jane Austen!!  She applies so well to our modern life!! hahaha!!



I really doubt it was the altitude Joanie - I'll bet you anything it was that Downy!!   Sooo strong those things!!!!   If it had been the altitude, you'd have begun reacting even before you reached the hotel, sweety!!!   But for you to begin only as of messing with those sheets, they are the culprits!!!

A learning experience - make sure the linens are not washed with fragrances!!!   Oh, the things we go through with this disease!!!   Sorry to hear about your disappointment and difficulties.  I'm glad it didn't progress and you kept it under control!!   Good Girl!
Back to top
 

Don´t forget, there is so much more to life than being sick!
 
IP Logged
 
Riverwn
FORUM MODERATOR/ADVISOR
*******
Offline



Posts: 993
Gainesville, Florida
Re: PERFUME!!!!
Reply #26 - 03/25/11 at 07:01:12
 
Im so sorry Hon, I know how much you were looking forward to that trip Sad   I think youve hit the nail on the head about fragrances... I was a "fragrance freak".. I bought it all, used it all, and could easily spend an hour in the grocery store smelling EVERYTHING. It was a sense of delight LOL.. to even think now that I did some of this to myself.. arggg...

Downey will definitely get to me.. and so will Gain.. with Gain if it just touches my skin, it turns bright red right there.

Im so glad youre home and safe now Joan Smiley
Hugs
me
Back to top
 

~~~Count  Your Blessings!~~~
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: PERFUME!!!!
Reply #27 - 03/25/11 at 18:10:59
 
I didn't mean to imply that masto is caused by fragrances, but it's one heck of a trigger for lots of us.

Fragrances are just one more difficult thing about travel.  I always make sure I'm sitting on the 2 seat side of a plane if I'm traveling with my husband, and he can be the buffer between me and perfume.  We're going on a trip following my check-up at Stanford next month, and I asked him what we'd do if we get to our destination and there is fabric softener on everything.  He said, "We'll go buy some new sheets and towels to use."  I guess that's cheaper than the ER!

Have a great weekend everybody!
Back to top
 


Joan
 
IP Logged
 
ruth
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 208

Re: PERFUME!!!!
Reply #28 - 03/25/11 at 20:03:40
 
Maybe that's actually worth considering Joan, I know of someone who takes her own sheets with her when she stays in hotels (not because of a sensitivity to fragrances though, she's OCD). A nuisance to have to fit them in the luggage but worth it if it saves you a reaction.
Back to top
 
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: PERFUME!!!!
Reply #29 - 03/26/11 at 01:32:21
 
Good suggestion Ruth!!!
Back to top
 

Don´t forget, there is so much more to life than being sick!
 
IP Logged
 
Pages: 1 2 3 4 
Send Topic Print