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START HERE! Tips for identifying your triggers and learning how to get better >> Tips for identifying triggers and how to get better >> PERFUME!!!!
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Message started by Lisa on 03/16/11 at 14:49:54

Title: PERFUME!!!!
Post by Lisa on 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!!! :o  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!!! :o

Lisa

Title: Re: PERFUME!!!!
Post by Joan on 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.

Title: Re: PERFUME!!!!
Post by Lisa on 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
:-*
 

Title: Re: PERFUME!!!!
Post by nikweth on 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.  

Title: Re: PERFUME!!!!
Post by missybean on 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  

Title: Re: PERFUME!!!!
Post by Joan on 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!    :)

Title: Re: PERFUME!!!!
Post by Josie on 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 :-) I am in spring so my risk is high. So being very careful xxxxxxxxx

many hugs
Josie

Title: Re: PERFUME!!!!
Post by Joan on 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.

Title: Re: PERFUME!!!!
Post by Sandi on 03/17/11 at 19:25:29
Sorry Lisa :(....   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

Title: Re: PERFUME!!!!
Post by missybean on 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

Title: Re: PERFUME!!!!
Post by Josie on 03/18/11 at 07:46:44
Hi Joan and Missy

Thanks ;-) . My fans extract a lot from the air , but i have been looking at air purifiers . Time to make the purchase :-)

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

Title: Re: PERFUME!!!!
Post by Riverwn on 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

Title: Re: PERFUME!!!!
Post by Josie on 03/18/11 at 10:02:05
Hi Ramona ,

Thanks :-) 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 :-) 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 :-)

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

many hugs
josie


Title: Re: PERFUME!!!!
Post by Riverwn on 03/18/11 at 10:55:57
Hi Josie :)
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 :)
Hugs
Ramona

Title: Re: PERFUME!!!!
Post by Lisa on 03/18/11 at 15:28:54
YOU ALL ARE SO WONDERFUL!!!   HOW NICE TO GET SUCH A WONDERFUL RESPONSE!!!    :D  THANK YOU!!!! :-* :-* :-*


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 Garįons.  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=2vrolijk_08.gif]


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

Title: Re: PERFUME!!!!
Post by Sandi on 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  :D Luckily that didn't make me sick!!! So glad you are on the mend again!!!

Title: Re: PERFUME!!!!
Post by Riverwn on 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 :)
love to all
Ramona

Title: Re: PERFUME!!!!
Post by Joan on 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!!   :P

Lisa,  Are you better by now?  Hope so!

Title: Re: PERFUME!!!!
Post by Kim on 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

Title: Re: PERFUME!!!!
Post by Lisa on 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.

Title: Re: PERFUME!!!!
Post by Kim on 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 :)

                                                         Stay well, Kim

Title: Re: PERFUME!!!!
Post by Sandi on 03/21/11 at 06:46:00
Lisa awesome explanation to the crash hangover :)   Joan, maybe we should start a business, Sherlock Scent Women, we'll find whats bugging you :)

Title: Re: PERFUME!!!!
Post by Joan on 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!

Title: Re: PERFUME!!!!
Post by Lisa on 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!!!   :)

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!!! ;D

Title: The culprit? Downy and/or altitude?!?
Post by Joan on 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!  :(    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!

Title: Re: PERFUME!!!!
Post by Lisa on 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!

Title: Re: PERFUME!!!!
Post by Riverwn on 03/25/11 at 07:01:12
Im so sorry Hon, I know how much you were looking forward to that trip :(   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 :)
Hugs
me

Title: Re: PERFUME!!!!
Post by Joan on 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!

Title: Re: PERFUME!!!!
Post by ruth on 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.

Title: Re: PERFUME!!!!
Post by Lisa on 03/26/11 at 01:32:21
Good suggestion Ruth!!!

Title: Re: PERFUME!!!!
Post by brigittegriffith on 08/19/12 at 08:00:23
Wow! I am in awe at how many of you have the same issues as me! I seem to be the girl in the bubble these days, scared of what will set me off. After reading a post about carpet, I am wondering, are wood floors tolerated well by people like us? Are there any chemicals used in laying down wood that need to be avoided??

Title: Re: PERFUME!!!!
Post by Anaphylaxing on 08/19/12 at 15:09:37
I don't know the specifics but ANYTHING new to me be it wood plastic, glue, paint, stain, perfume, lotion, sunscreen, electronics  etc that hasn't had time to "air out" triggers me.

Almost anything that I leave outside or a room able to have constant fresh air through it can be tolerated by me in a week or so.

I feel like the pink panther or something I'm always searching for scent/toxin sources and ridding whatever I can.

I found the most useful home info on the environmental illness and multiple chemical sensitivity home building sites if you google those.

Title: Re: PERFUME!!!!
Post by brigittegriffith on 08/19/12 at 17:15:50
Yes, I'm the same way. Anything new sends me into a tailspin!

Title: Re: PERFUME!!!!
Post by Anaphylaxing on 08/19/12 at 20:34:55
I'm so sorry it's like that for you but feel better sharing it with someone :S

There's a strict protocol in my home at the moment. Anything new needs to spend it's initiation time outside or somewhere else to air out. Then a healthy person checks it for smell, if passed, then I approach it's vicinity and make sure I'm ok. I learned most of this the hard way at Christmas with all of the papers and new things and I was feeling sicker and sicker until I finally inhaled near a new radio that smelled like lavender to me and my tongue started to swell. I finally made the connection!

If anyone goes on a trip they need to take clothes off and put with all trip clothes outside to air out or wash somewhere outside of house so that the scents don't permeate the whole house through the laundry. It's insanity. We can't have people over or they fill up the house with scent. If someone eats onions, garlic, vinegar, or anything remotely spicy I need to stay quarantined away or I start to react from their breath.

really hoping my system settles soon! Hope yours does also!

Title: Re: PERFUME!!!!
Post by Lisa on 08/20/12 at 02:23:05
Hey Ana, I think this is the Key!!!!



Anaphylaxing wrote on 08/19/12 at 20:34:55:
really hoping my system settles soon! Hope yours does also!




I have been noticing and reflecting back to when my masto came out of hiding through these past 5 1/2 years in regards to this and I do think that for those of us who are not the classic SM and most especially those who are autoimmune that this is the key for us.   "hoping my system settles soon".  

So many of us talk about getting into a cycle of triggering and we can understand that concept, but I wonder to what extent we really do.  Itīs a real pitty that none of the authorities have ever written about this or decided to study this for this would be of immense help to us gain understanding and also help our doctors for I think that this is a very important factor in our reacting and how level of sensitivity.  

I canīt help but think that depending upon how our masto showed itself has a lot to do with how aggressive the reacting can get.  Itīs hard to differenciate between all of the forms for the researchers insist that the severity of the disease has nothing to do with the severity of the reactions, however, I canīt help but question this when it comes to those who are allergic to their own selves.  This patient group seems to be more reactive since they are reacting to their own immune system.  But regardless, it seems that even amongst those patients who do not have an autommune form that this still rings true that we can get caught into a vicious cycle of rebound reacting.     So, being this so, this is something which I feel contributes to our level of sensitivity.

I donīt know how many of you have noticed this, but when you are reacting every single sound, movement, light, and smell seemed to be hightened a thousand fold.    I first noticed this following my hysterectomy which is what brought my masto out of hiding.  I can remember laying on my couch, avoiding the TV room at all costs because I couldnīt handle the volume of the TV nor the constant movement my  eyes would be in by watching it.  I kept myself in the living room where it was quieter and more peaceful.  My kids complained cause I was always telling them to TURN IT DOWN!!  I just was totally unable to handle any sounds that seemed higher than a whisper!!!   And bright lights caused pain!!  Smells seemed "strong"  too.  But none of these caused me to react, not at that time anyway.

This was totally new to me!!!  TOTALLY!!  But I figured it was due to the anemia which I had incurred with my surgery and that it would improve, which it did.  However, since then, as the years have passed Iīve noticed that depending upon what Iīm doing, or what has triggered me, this oversensitivity returns, especially following surgery when my body is at its weakest and my immune system has been put into overtime trying to repair the damage that surgery creats.  Yet, after a CT with contrast or an invasive procedure, this too will create these same situations only not as acute as surgery creates.  

However, as time passes, and the more my body is allowed to recuperate these hyper-sensitivities also seem to settle as my body heals and finds its equilibrium once more.  

Yet again, I canīt help but think that this may be relative to how your masto came out - was it violent like mine was, or was it a growing process where it increased slowly over time?   This may be an important factor and you should try to reflect to see what your case was.   Why?  I canīt help but think that those who have a violent beginning, where there is an obvious line drawn between before and after that these people have had their system so totally and violently thrown off balance that ti may take more work to bring it back under control - or at least some hint of balance.  Whereas those who have a slower increase may have grown into an imbalance and pattern of cycle which they are unaware of and that if they can find the means to regain this balance, therein may lie the key for these patients.

Granted, this is all theory, but I think it may help in trying to find a means to settle back down your system.    The key may be in understanding how sensitive your system is and then finding the means of getting it to calm down and then keeping it that way.

Why do I say this?  Well, Iīve got a watershed situation by which I can judge my reactivity and thatīs my open heart surgery in 2010.  Up until then I was undergoing anaphylaxis on a weekly basis.  As of that time period, due to the size of that surgery and the need to halt all medical investigational procedures which were either invasive or produced any kind of major reacting, this allowed my system to slowly calm down.  My meds remained high with allegra, ranitidine, cetotifeno and singulair on a double dose daily.  I  got good sleep, I didnīt do a great deal of activity and kept a very low profile.   I did have reactions with syncope being the major reaction Iīd incurr and although I still had medical procedures, only two produced major reacting - one was anaphylaxis due to a contrast which nobody ever reacted to before and the other was a colonoscope.  However, these were 6  months apart and my system had time to calm back down again prior to my facing another procedure.   So, in between these procedures during these past 2 years, my body hasnīt been way overly stressed.  

Now, in these past 2 years I suddenly became highly reactive to perfume.  It was begun by this one HORRID perfume which my sister gave to my son.  And I got a BIG DOSE of it, not just a small whiff.  This is what rocked the boat!   Iīve had 7 major reactions since, with my  last one being last May.  Iīm noticing that although Iīve become sensitized to perfumes, the further away I get from a reaction, the less sensitive I am.  The key seems to try to stay away from the strong perfumes so that it doesnīt rock the boat - keeping my system CALM!!!

So, yes, eliminate the offenders as much as possible is necessary, but I canīt help but feel that in keeping it that way so that you avoid triggering as much as possible is ESSENCIAL so that you can keep your system calm and thus perhaps your triggering threshold higher.  The constant triggering seems to keep your threshold of tolerance very low and by remaining low the anything and everthing triggers you and you remains super/hyper sensitive to not just smells, but other stimulae.


Iīve been taking a course in pharmacology on Coursera.org.  Itīs being given by Dr. Emma Meager of Penn State University.   She teaches about medications but sheīs also teaching about cells and their receptors, etc and this has been teaching me so much in regards to the mast cell and what is triggering it.  She talks about the cells having receptors for sensory stimulae like light, taste, noise, smell and touch.  And sure enough, this explains fully why some of us canīt handle these things and the more reactive we are, the worse these things trigger us!   Every doctor is taught this, but since they donīt feel it for themselves, they are unaware of how it works.  

This is why Iīm becomming convinced that we have an incredible need to try SETTLE DOWN OUR SYSTEMS!!    

This means not only elminating triggers, but also being extremely KIND to your body - good sleep, HEALTHY foods, etc.


And here Iīm going to go into another area - FOODS

We Americans, and I would expect that goes the same for Canadians and Brits and any of us from a society which has a lot of industrialized foods, WE MUST STOP EATING THESE THINGS!!   THEY ARE POISONS!!    

If that means you spend 2 hours to fix each meal then so be it!  If it means you sit down to figure out what meals can be quick with the least amount of cooking time because you canīt eat left overs, then so be it.  If it means you turn all your meals into crock-pot/slow cooker meals, then so be it.  But use FRESH fruits, meats and especially veggetables.   NOTHING INDUSTRIALIZED!   NOTHING which has any kind of preservatives or additional ingredients to keep things fresh. That means investing in a peeler and sitting down and peeling, slicing, and hand preparation or with a food processor so that there are no artificial flavors or fillers or preservatives other than those which are totally natural in the form of raw herbs and spices like pepper, garlic, lemon, thyme, rosemary, etc.   It means returning to the time of how your GRANDMA cooked her meals, with great love and care and careful seasoning.  

I know it seems like taking a step back a good 70 years, but with those of us whose immune systems are compromised and are hyperactive to any kind of serious addition either food wise or atmosphere wise, we have no choice but to do so.  We must say

NO!!

to any kind of artificial flavors, colors and additives

NO!!

to any kind of prepared foods including cereals, breads (except for those which are the barest of bare ingredients), cake mixes, puddings, mixes for stuffing, canned or dried soups, frozen meals, frozen foods, etc, etc. etc!!!

NO!!

to anything which you only have to heat up and serve!!

Say,

YES!!!

To every RAW veggetable and fuit out there (DEPENDING upon whether you are sensitive to salicylates and histamines ), unprepared rice, unpreseasoned meats, etc.  

Time to return to living and cooking like Grandma did using a cook book like the Joy of Cooking which doesnīt make a recipe with using things like Bisquick or other prepared foods as a shortcut.  

With time and with practice and planning you will find you can make an incredible Chicken Rissoto without anything precooked or prepackaged and it can be ready in about 1/2 an hour!!!   FRESH, HEALTHY, FAST and something which will not cause you to REACT!!!! :D

This is how you help your system to CALM DOWN, by surrounding yourself with things which donīt force it to react and by calming it down and by taking Mast Cell Stabilizers and the proper meds and avoiding known triggers, your system will CALM DOWN and be that much harder to react the next time a serious trigger comes along like PERFUME!!!!


Well, this is what my viewpoint is on this, for what itīs worth.


Lisa

Title: Re: PERFUME!!!!
Post by Anaphylaxing on 08/20/12 at 10:19:39
interesting Lisa thanks.

IT's hard to find patterns, for me everything else is improving except the scents which started suddenly after a garlic exposure. prior to that I was an inpatient in two hospitals for weeks and never even noticed all the cleaner smells etc. Now I can't breathe in the hospital.

I am extremely strict on a limited diet of only organic whole foods just fruit and veg mainly (bake my own bread) with zero fat because of my gallbladder and have been eating this way for 9 months (I have even rotated out everything I'm eating at one point to ensure I'm not reacting to it and need to rotate the few things I eat to not react),  I was making great progress adding foods but have had to stop due to the gallbladder as I can't risk rocking the boat, hardly ever near my family as they often have scents, only leave the house if it's for fresh air, limit stress, sleep 12-14 hours per night and consult with the mast cell docs. And still my scent reactions are to almost every smell not just strong ones. sick of it. I find these reactions affect those around me so much as it limits their lives as I'm sure you've found. It was much easier when I was just avoiding certain foods

I agree with you completely about letting things settle. Day to day now if I live within these severe restrictions I feel almost normal !! which has been amazing progress for me and I am so thankful! It is only when exposed to triggers that I have issues which never used to be the case. That being said, even as things were improving the scent issues became more expansile for a time until where they are now.

But last week I had to go and see the surgeon and the perfume, cleaner and hand sanitizer smells on top of recirculated air gave me throat swelling and a flare even though I waited outside to avoid the waiting room until my appointment started which lasted for days after the appointment, but thankfully now I'm back to baseline.

For my family member who had similar issues, hers stayed severe for 2 years then gradually improved as she tapered off all meds. I cannot risk tapering right now with surgery on the horizon, but who knows it if will ever get better or if I'm stuck with this.

Seems not all of us are affected by the scent/chemical component and I use to think I was one of those. But I'm SO thankful my cardiovascular system has improved phenomenally, my food reactions also and my symptoms overall, and my adrenal function has returned!! so I have to pray that the scents will eventually follow suit.

Have the scents improved at all for you since they started? Is it still just to strong ones? Were you not just eating organic/whole foods then switched to that and it improved your scent reactions? Hope you found something that helped you.


Title: Re: PERFUME!!!!
Post by Doozlygirl on 08/20/12 at 11:07:47
Lisa,
I have to share that while reading your passionate post, I found myself humming Glory, Glory, Hallelulah.  

BTW, I agree wholeheartedly that the artificial stuff in our environment, be it chemicals, preservatives, toxins, dyes, fragrences, medications, etc is causing substantial overload to me and I suspect others near me.  I found a great drop in my symptoms when I first purged my diet, personal care products and cleaners from my world, but have since plateau'd and have been assessing my next steps.  Will likely have to make another sweep through all these products, once I am done tapering up some of my meds.

Keep singing that song and soon others will join in!   :)

Lyn  

Title: Re: PERFUME!!!!
Post by brigittegriffith on 08/20/12 at 15:18:47
I am so overwhelmed with information right now!!!! When I was on this forum a couple years ago, I mentioned that laundry detergent, new carpet etc. set me off into a panic attack like state. A few people wrote back saying that they had experiences similar to mine. I had no idea that over the past two years since I've been on this site that the medical world is now recognizing this symptom as a mast cell disorder symptom. I have doctor after doctor tell me I'm nuts for claiming this! I need to find a mast cell specialist. I wonder if I do have masto or just autoimmune urticaria. But right now I'm not really even being treated!

Title: Re: PERFUME!!!!
Post by brigittegriffith on 08/20/12 at 17:24:00
I felt the same way reading Lisa's post. I'm just so scared right now. I've been so sick for the past two and half years, I've lost my gumption. I feel like I don't have the energy or the support to make the changes I need to make. It's daunting. I have gotten rid of the cleaning supplies, deodorants, hair products etc that make me react, but I know I need to do much more as far as eating clean. I should do the elimination diet since I don't know wether or not I am sal sensitive, but like I said before, I have become complacent between all the psych meds they've put me on and constantly feeling sick. I just wish there were a place we could go to jump start our journey towards a healthy lifestyle for us, like a retreat where food was prepared, there are no fragrances and everyone could share their stories and support one another. Wouldn't that be nice?  :) anyways, enough rambling. I'm sure you're all tired of the firestorm of posts I've put on here since re joining! Lol I just have so much to say! So much to ask!

Title: Re: PERFUME!!!!
Post by Lisa on 08/20/12 at 22:10:37
Bridgette, just a thought but get your serotonin levels checked.  Dr. Metcalfe found that some of us have way below levels of serotonin.  Mine have dropped drastically the more active my masto became after it came out of hiding.  It's so low right now it's ridiculous and this can indeed interfere.  Yet, if your levels are rock bottom then anti-depression meds which are serotonin uptake inhibitors make things WORSE!!  My doctor tried to put me on doxepin when he saw the positive ASST test for CU and my  nephrologist had to take me off 5 days later.  Not only did I have an exacerbation of my masto symtpoms, but they also attacked my kidneys.  


Lisa


ps - sorry gang if I get too strong at times!!  I don't mean to seem like I'm yelling or giving anybody a raking over the coals especially NOT Ana!  I do get strong about this subject because I've had a chance to see this up close and in a clear manner how much our foods have affected us over the years.   When I left the States for Brazil I was the overweight one and not my bridgesmads and girlfriends.  I was a size 16 then and considered chubby.  Now, I'm the one who's slim for here in Brazil we have very few industrialized prepared foods and people could not afford to eat out much, especially me.  When I return to visit, everybody is so much bigger than I am and I am now seeing the Brazilian people gain weight too due to our having a better economy now which permits for people to eat out and buy a bunch of junk!   I can easily see the correlation as it walks past me and it's so very sad to know that it's our industrialized, pre-packaged, instant lifestyle which is killing us!

Title: Re: PERFUME!!!!
Post by DeborahW, Founder on 08/21/12 at 01:52:20
Here is a funny story about odors: Onions really bother me, both eating it and smelling it. Therefore, onions are not allowed in my house. Once we had a big Academy Awards party. The theme of the party was that each guest had to bring an appetizer based on a nominated movie. The most creative appetizer won a prize.

Well, one of our friends brought an appetizer that had long freshly cut green onions all over it! Yikes! I about died of embarrassment telling them how much I loved their appetizer but that it couldn't be in the house!  [smiley=embarassed.gif] :-X

Title: Re: PERFUME!!!!
Post by brigittegriffith on 08/21/12 at 04:19:01
Thanks for the tip Lisa! I probably should have my serotonin levels checked. I never have had them checked. But I am in 3 drugs that may be causing me problems! Yikes! It it just a simple blood test?

Title: Re: PERFUME!!!!
Post by brigittegriffith on 08/21/12 at 04:26:06
If I were to go to a specialist, would they know all this? To check my serotonin levels etc? The more a read the more I realize my doctor has not kept up on any of the new information! And she refuses to have me checked for mastocytosis! So weird!

Title: Re: PERFUME!!!!
Post by Anaphylaxing on 08/21/12 at 10:21:57
Your passion is wonderful Lisa!

I certainly didn't think you were raking me over the coals, just emphasizing what you think is important which I agree with and am implementing also.

We're singing in the same choir :)

Title: Re: PERFUME!!!!
Post by Lisa on 08/21/12 at 15:28:35
Bridgette, perhaps you want to consider looking for another doctor....!


There does come a time when we must face our doctor's own limitations.  They aren't gods and they don't know it all and due to the horrendous legal implications that we patients have put them under (for we are the ones who do sue them, you know) many doctors today don't even want a patient with a disease they don't know how to treat in their offices anymore!!   This makes it especially difficult for us for although we know these doctors to be very competent, due to the challenge they face, they would rather not work with us.   Some doctors don't even consider the legal implications, they just don't like working with a disease they don't know well and so they will only take you as far as they can, which , if you think about it, is the responsible thing to do.   So, like it or not, your doctor may have reached her limit and you are only making it harder for her by trying to push her into the unknown.  

I understand the frustration, Bridgette and I know there's not a soul amongst us who doesn't know this frustration.   We want to get BETTER, but without a doctor who knows what he's looking at, how can we find the adequate treatment if we don't get a diagnosis?   And how can we possibly get a diagnosis if our doctor is clueless?  It's a really difficult situation and I know our doctors feel this frustration too!

So, this is why I say, perhaps you need to move on.   I recently had to do this and I really didn't want to for two reasons - 1. I'm not one who bounces from doctor to doctor.  and 2. I fear not finding someone better than I've already got.   This happened with me recently in that I had a clinical doctor who I felt was pretty much on top of things but as time was going on I could tell she was not looking at things the way she needed to.  I had a run-in with her at the hospital and I could tell she wasn't very comfortable having to deal with me and I could feel her discomfort.  I was AFRAID, however, of not finding better and so I kept trying to insist that this medeocre relationship was FINE.   But it WASN't!!!  It wasn't fine, not for me, for how can I trust someone whom I can tell is just not interested enough to keep following my case and continue learning?  The doctor I found to replace her WAS MUCH BETTER but because I was so afraid to step out of my comfort zone, I was ready to settle with mediocre! :P  NOT GOOD!

I know it's hard Bridgette, but there are times when you just need to face facts and try to find another doctor.  

Now, as to the serotonin levels......

Bridgette, in the beginning I too was expecting my doctors to keep on top of things but I've learned something in my journey.   I can't say for certain about doctors there in the States and Canada, but our system here is different and doctors are totally independant and when you go to one for the first time they run a series of tests from their areas, of which they are accustomed to running, as a means of finding direction and learning about their patient.  If they are investigating you then they will keep widening their search and sticking to their area of expertise.  Then, once they find something they will do control testing, keeping on top of that thing which they found off and other tests which are related to it in order to keep things in check.  If you are seeing a doctor who is unfamiliar with certain findings and it is not in their area, they won't ask for those markers.  They're not comfortable.  And when your doctor learns to trust you and you've shown them that you are learning about your illness, often they will ask for exams that you request, especially if they are seeing that you are keeping tabs on certain things.  

This is what happened with my serotonin tests.  In the beginning it was my oncologist who did this testing and when my dermatologist got shook up by some severe reacting following gallbladder surgery she went back to suspecting the carcinoid syndrome.  This can happen to doctors sometimes when you are still in the midst of the investigational process and you do not have strong confirming tests giving absolute direction, as you've seen with the carcinoid testing yourself.   So, in order to find her footing, she had me speak with my oncologist again and he told me which exams to have run and we did them again and serotonin is a major marker for carcinoid.   We saw that 2 years later my results were even more negative than before, so this made me want to keep an eye on it so six months later I decided to ask my gyno to run this test, which he did and it came back lower still!  And, since my oncologist fully understands serotonin since it's a marker for carcinoid, I also sent him a copy of the Metcalfe study on serotonin levels and it was at this time my oncologist told me that SSRIs are counter-indicated in my case.  

So, if you think I get to play patient, and just sit back and relax, you're wrong.  I went to consult with my endocrinologist and she told me to tell her what tests to ask for so that when I'm in a crisis the next time we can get some testing done.  I gave her a few suggestions but expected her to know the rest!  She was unsure and openly said, "Lisa, you know this disease better than I do, you tell me!!!"   ::)  It's not easy carrying the burden for my own care, Bridgette, but it sure beats knowing my doctors could unknowingly harm me by not knowing enough.  I know how to protect myself now!!!   Definitely A GOOD THING! :)

That's what I hope for you, to learn enough to protect yourself!


Lisa

Title: Re: PERFUME!!!!
Post by Joan on 08/21/12 at 19:11:38
I had a different experience with doxepin.  It was the first medicine that helped my symptoms besides Benadryl, probably because it blocks both H1 and H2 histamine receptors.  It also helped me get into stage 4 sleep, which wasn't happening due to triggering, so I felt much better in the mornings.  I wonder if the difference for me is that I don't have the auto-immune variety of SM.

BTW, doxepin is a tricyclic antidepressant, whereas other drugs like Prozac, Zoloft, and others are SSRI's and inhibit serotonin re-uptake (meaning it leaves more serotonin circulating in the body instead of being taken out of circulation and broken down).

I couldn't agree with you more, Lisa, about avoidance of triggers allowing our bodies to settle down.  Even in IgE allergies, my doctor said that if I could get 8-10 hours in a room without triggers, I would start to get better and not react to so many things.  That meant no triggering foods, inhaled things, exposure to environmental triggers, artificial anything, etc.  It took a while, but it helped a lot.  Sometimes it seems impossible, but lowering stressors can make all the difference.  We can eat well and carefully, avoid food and environmental triggers, but if we have a lot of stress and too much to do, we'll trigger from that.  Looking at your mental/emotional stressors and trying to eliminate them, can be beneficial.

 

Title: Re: PERFUME!!!!
Post by Anaphylaxing on 08/21/12 at 22:10:52
Well said Joan. so true

Title: Re: PERFUME!!!!/doxepin
Post by brigittegriffith on 09/08/12 at 07:44:49
Hi! Reading through older posts this morning! This one got me wondering about doxepin. So im piggybacking off a thread from August. I have struggled with anxiety and depression for much of my life (what is a symptom of mast cell disorder and what is not, I am not sure, but I do believe there in a fine line there). Ihave gone from being diagnosed with depression/panic anxiety disorder, to bipolar type 2, different from bipolar type 1. Anyway, I have tried virtually every medication out there for these different disorders, everything but  doxepin! I take take several mediacations that work on setotonin including Zoloft (which is an ssri) remeron (which I believe is a different class of medication, but still works on serotonin) and geodon, which also works on serotonin. I am kind of confused though. Do these medications deplete serotonin or give you more? From what I've read it sounds as though these drugs breakdown serotonin and get rid of it. As far as I know, I have never had a blood test to test my serotonin levels. I am wondering if having a mast cells disorder, its possible that I am already low in serotonin, and these drugs are making things worse???? If anyone had any insight on this, I am very interested. What could be the effects of having too little (or too much if I have this all backwards) serotonin?? And I was wondering about doxepin......does this drug help to calm mast cells in the brain? I know that the Zyrtec and Allegra do not cross the blood/brain barrier. Is it important to get something up there in the head?? Lol has doxepin been a good drug for people for both mast cell issues, as well as for those who also stuggle with depression/anxiety?

Title: Re: PERFUME!!!!
Post by Lisa on 09/11/12 at 02:05:33
Doxepin is an SSRI as well as an old antihistamine.    As to your serotonine levels, you should ask your doctor to ask for the serum serotonin levels because not all masto patients have low levels.  Some have elevated serotonin levels and then doxepin would not be contraindicated for you!

Lisa

Title: Re: PERFUME!!!!
Post by brigittegriffith on 09/11/12 at 02:43:37
Hi lisa! So if I had low serotonin Doxipin would not be good for me? But if I had high levels, is would be an option???? I'm a little confused on high vs low levels and ssri's. Thanks!

Title: Re: PERFUME!!!!
Post by Joan on 09/18/12 at 20:16:19
This is a good link about the differences between tricyclic antidepressants and SSRIs.  It explains the effect each has on neurotransmitters:  

[url]http://www.emedexpert.com/compare/ssris-vs-tca.shtml/url]

Title: Re: PERFUME!!!!
Post by Lisa on 09/25/12 at 10:51:33
Bridgitte, I've not got much understanding about this.  This is what one of my doctors told me and it made total sense cause every time I was given one of these I got much sicker!!  Now we know to shy totally away from any kind of SSRI.  Instead I need to eat foods and try to increase my serotonin levels.  But without doctors who really know about this, I'm not getting very far.


Lisa

Title: Re: PERFUME!!!!
Post by brigitte on 09/25/12 at 12:21:53
Interesting Lisa! Did the doctor say that SSRI'S in particular did this, or any kind of antidepressant. Zoloft was the first psychiatric medication I was put on. And I did not feel well. As we titrated up, I feel awful and would sweat like crazy! Funny, he never took me off it. So a few years later he added very lowdown geodon (an antipsychotic, eekkk! Bit in low dose it is simply and antidepressant) this medication seems to help much better. Actually, it worked really well for my depression and mild OCD. Now I am also on remeron, which is not an SSRI, but is in a different catogory of antidepressants. I was given this because I'm an insomniac and typical sleeping medications don't work for me. (but over the summer, the remeron had stopped working for sleep  :-[, I need to find something else.) anyways, if you remember any other info the doc said on these kinds of meds and how the effect mast cell disorder, I'd love to hear it! I wonder if the other meds are ok, but of we should start thinking about ditching the Zoloft  :-?

Title: Re: PERFUME!!!!
Post by brigitte on 09/27/12 at 08:19:43
I'm going to my psychiatrist today. I think I'm going to talk to him about doxepin. Funny, out of all the immunologist and allergists I've seen, my psychiatrist is more on board with BELIEVING me and helping me than any of them!!! So I have a question. Last week I woke up with this weird hard hive looking thing in my cheek probably the size of a quarter.  It was white
in the middle and bright red around it. As the day went on, it turned all red. It took a few days to go down. It ended up oozing puss (eewww, go ahead and vomit! Lol) but it wasn't like a typical zit as it didn't start out like a zit, and when the puss did come out, unlike a zit, it came out of several small holes. Then the other day, another one started, same thing, and today it drained, again out of several small holes. I wish i could show y'all a picture. Just wondering if anyone has any thoughts on what this might be. In the past, my hives don't drain, they just go away. Are there skin conditions caused by mast cell disorder that do this. Or do they just fade away? It's like nothing I've ever had before.  :-?

Title: Re: PERFUME!!!!
Post by Joan on 09/27/12 at 15:48:46
No, this doesn't sound like either a hive or a mast cell issue.  It sounds like an infection.  It could have been from a spider or other insect bite  (and possible spread to this other site) or it could be a boil (staph infection).  If the first one is healing on its own, you might let it dry up.  If not, I'd let your doctor look at it.

I'm not saying you should do what I would do, but I'd want to wean off all those psych meds as soon as possible.  If I were taking that many different prescriptions, I'd wonder if one or a combination of them weren't causing as many symptoms as they were helping.  For example, the insomnia could be from one of the meds, and, as Lisa said, SSRIs aren't thought to be good for us.  

Doxepin on the other hand, has been good for a number of people with MC issues.  The only reservation there is that it should only be taken at night if you have to drive or operate machinery, as it can make you sleepy.  That, of course, is helpful for someone with insomnia.  And, it should be started at a low dose.

Lisa, what foods increase serotonin?  Chocolate?  I'd like to try something natural!

Title: Re: PERFUME!!!!
Post by Lisa on 10/22/12 at 22:18:04
I think youīre right Joan, it doesnīt sound masto at all!!!  MCs get involved yes, but itīs not masto caused.  Sounds like a bite to me too!!

As to food that raise serotonin levles.......I WISH I KNEW!!!


Lisa

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