My chemical sensitivity seems to be worsening significantly. The problem is all kinds of perfumes and after shaves, even hair stuff and perfumed lotions. I don't use them, neither does hubby, and my daughters use them only moderately and know how to do it without making me suffer from it. But the world is full of people who do use them! >:(
For a long time I actually doubted myself if I had it or not. But now there's no question about it, when over and over again I find myself coughing like crazy, wondering why, until I notice some scent around again. And so often others don't find it even if I tell them that it's there and makes me cough and they try to find it.
Today we brought in a pair of second hand sofas, because our old ones really were in bits and pieces. The "new" sofas are tidy and nice and look almost like new. However, after a little while of sitting on them I noticed I'm coughing. Then I realized the scent in the air I had been dismissing, was coming from the sofas. I guess the former owners have sat on them with loads of perfume on. While there today I had no problems and didn't even notice the scent.
After a while I actually had to move away from the sofa. I could sit in the recliner a couple of meters away, with no problems. I didn't even smell the scent. But then the others went to bed, I stayed in my recliner. The scent started to creep on me - and I find myself coughing again and my throat is beginning to feel raw :( Remains to be seen if I can live with those sofas at all - if the scent doesn't go away the sofas will have to...
But also in general, this summer has been horrid. I've been totally fatigued, migraines if I stop taking my antihistamines, no energy or strength (or brain capacity!) to do anything at all. Some neuropathy symptoms and the antihistamines make my eyes burn and the inside of my nose scarred and bleeding - other than that not much pain or other symptoms from either SJS or Fibro.
But the chemical sensitivity has been crazy! One day I almost suffocated OUTSIDE walking a few meters behind a couple of young men... What makes it worse like this? The antihistamines don't seem to be touching it at all - is there anything to help it, other than a breathing mask? ::)
I have the same problem. Mine was triggered by Lyme disease many years ago. I have MCAS .. Mast Cell Activation Disorder. I also have Sjogren's.
Here is an article you may want to review:
http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/
http://www.corebrainjournal.com/2016/07/028-lawrence-afrin-mast-cell-activation-syndrome/
https://drive.google.com/file/d/0BxK4lGunsmzgLXhrUk9NYVRHemc/view
Also related to Histamine Intolerance:
http://www. curezone.org/diet/low_histamine_diet.asp
Thank you, Jazzlover.
I tried reading those articles and the entire issue sounds and feels so very complicated that at least with my current level of brain fog and tiredness I just can't make any sense of it. Other than that it's again something that doctors here either don't know or at least don't want to investigate.
I don't have a doctor of my "own" so I guess I'll just try to get on as best as I can. I'm in no shape to start fighting with some random doctors...
:( :( :(
Just to let you know that you are not crazy. I am glad someone mentioned the mast cell problem. I don't have that but since my teens I have had problems with perfumes, hair products, soaps and anything that smells. Do no put an air freshener in my house. I get headaches from these plus bronchial spasms with all the other things.
Then there is the new furniture smell, the new carpet smell, the new curtain/drape smell ( I have to hand them overnight and if I have problems back to the store they go) and even the dyes in clothes. I have a terrible time in fabrics shops and furniture stores. Then there is the new kitchen cabinet smell with the chemicals in the wood. I use inhalers so I am prepared. With the over reaction you have I would think that being assessed by an immunologist/allergist would be of great benefit. The autoimmune and immune and allergy response are all very related. Good luck. Irish
irish .. The problem is that most allergists/immunologists do not have any understanding of MCAD or MCAS.
I was lucky and found one who did. I had to fire the first one.
I have this going on also. This year for me has been the worst.
susanep
Ii understand about having a doctor not know about the Mast issue. The problem is that the immunologists are the guys that should know about this. There are good and bad immunologists. The other thing that I have noticed is that many of the immunologists like to treat mostly people with allergies, etc. It is much easier for them and they don't have to work as hard in their treatments.
The immunologists who like to treat autoimmune and immune deficiencies are the docs who are nosy. They sort of have a thirst for knowledge and like to get to the bottom of a problem They can be found reading and researching and burning the midnight oil. The best way to weed these good ones out is to talk with their nurse or someone higher up in their office hierarchy when making an appointment. Ask if the doctor treats autoimmune patients. This is one good indicator of their interest in the subject. We just have to keep ono keeping on. Treating autoimmune patients is hard work and a lot of docs don't want to spend all that time on it. Good luck. Irish
eija, sorry things are getting worse for your chemical sensitivities. I have some as well. New carpet and flooring are bad for me, some new furniture too sometimes. Some smells will give me a headache.
It's been a rough summer for me as well. Maybe what others have said about the mast cell disorder is what's happening with you. I hope you find a solution too.
Quote from: irish on July 31, 2016, 01:43:48 PM
Treating autoimmune patients is hard work and a lot of docs don't want to spend all that time on it. Good luck. Irish
-
For sure...
Eija, I have the same problems and mine are getting worse, too. I probably started 10 years ago and at the time thought I was always coming down with a cold. We sell scented soaps, incense and oils in our store and I really had a problem with lavender. I still can't do it. This past weekend I had to see clients at a woman's house and she did not know she left the gas stove on half way. When we walked into the house, the whole house smelled like leaking gas. It took the whole time I was there to get rid of the smell. I made it through, however, with a headache, sore throat and coughing.
I am going to check on the mass cells as well. Love and hugs, J
Thank you, everyone.
I've been too tired (and busy) to post on the forum, but trying to do some now. However, I seem to be struggling with finding words - I know they're there, just can't catch them >:( Well, need to word around them then...
I've been sticking to the antihistamine. Despite that I've had a headache for three days in a row now. Not even the weather explains all of it, but maybe other things do, like stress, overdoing (going through stuff in my bedroom/office and redecorating it), heat etc.
The sofas are still here. A few days ago I sat there for a moment with my daughter because we went through some things on her computer. After a while she mentioned that I'm coughing again. Oh yeah, that's true. Soon I had to leave the sofa. And now, sitting in my (old) recliner (which is bad for my neck), nobody on the sofa, so the smells are free to float to me - I feel constant tingling in my throat.
This is so enfuriating!
I think finding a doc in Finland who's knowledgeable about MCAS is very difficult. Immunologists aren't common at all either... I found a clinic, a private one, which is not "main stream medicine" - they even test both iGe and iGg allergies. Have to check that place better, maybe ask them a few things and then maybe make an appointment there. It'll be expensive, though. And so far I know they're big on diets and I am not one who can cope any kind of special diet - so I'm afraid the visit would just cause me more guilt and feelings of inadequacy...
I'm reading a blog from someone with CFS/ME as well as a horrible case of chemical sensitivity. She mentioned that predisposing herself to chemicals gives her horrible symptoms, like legs going so flabby that she just can't walk. I'm glad I'm not that bad, and hoping won't ever go that far. But the symptoms worsening so much this year does make me worry a little...
Antihistamines seem to be doing so little, if anything, to the sensitivity.
You could at least try avoiding the foods that are very high in histamine to see if it helps. You can also try adding Pepcid or Zantac to your regimen.
Also avoid food colorings and junk food.
I guess I need to. First I need to dig into what foods are worst and start there. Not looking forward to it, but...
Today again I woke up with a mother of all headaches :( Possible reasons for that are overdoing, eating a load of fresh strawberries in the evening (histamine!) and new shelves we built yesterday next to my bed - they made me cough a bit when I went to bed.
Today I couldn't hug my daughter because of her deodorant. That has not bothered me before, other than right after if she's applied it. Older daughter came home. She had eaten garlic, and picking her up I had to open the car window because I couldn't manage the smell.
Life is really getting complicated. According to a Finnish article about chemical sensitivity, the symptoms are more intense during cold winter - and I thought this would get easier once summer is gone!
:( :( :(
I get asthma from any foods high in salicylates. Be careful and begin your search.
Have you tried looking up the products you use on the Environmental Working Group website? They have a huge database that you can search and it will tell you how toxic the product is. They put so many chemicals and toxins in things these days and those of us with AI issues are ultra-sensitive to this.
http://www.ewg.org/skindeep/
I had to replace all my products because I was so sensitive as well.
Have you also tried and ELISA/ACT test? I had one done and it came back with a few chemical sensitivities including povidone (PVP), which is in most dry eye eye drops!! :'( It also came back with strong IGG reaction to dairy, which was what was causing my throat to be swollen all the time. I was coughing constantly. Soon as I cut out dairy, it stopped.
Elija, jazz, iRish..others...
Will go back and read...but I'm a little sick today and moving slow.
I've had the weirdest problem for several years.
Whenever we visit family in central fla. I often get sick. I get upper respitory congestion that can lead to an infection. We stay at the same place every time. no one else gets sick. Then I'm around little kids, so am exposed to germs.
I've been able to improve upon the situation by taking precautions.
BUT, last visit, I noticed I felt a little better with the window open.
Is this perhaps the type of thing you are taking about? Could the furniture (for example) inside the apartment be bothering me?
Will read the links when I feel better...I rarely get sick like this elsewhere.
I purchased two snake plants aka mother in law plants. They are said to filter all sorts of nasty toxins in the air. They are also nicknamed bedroom plants because of this.
I'm optimistic.
Feeling better.
Aaaagghh it's been crazy couple of days again!
On Friday daughter had a few friends over for her birthday. They know I'm sensitive to chemicals and daughter had reminded them about it when inviting. One of the girls stayed for the night and another "forgot" to leave in decent time so I drove her home. When leaving I noticed a scent in the air so I took a scarf to keep over my nose, and kept the car window open. That didn't help. I coughed so hard I could feel my back muscles get torn in zillion pieces! Finally we realized with my daughter that it was the girl who was staying over - a smell of washing detergent in her clothes...
Then yesterday I had to go to my sister because she had serious trouble (she has severe MS and she got some kind of a cramp). She smokes at home, under the cooker hood. The house doesn't smell very bad, but I noticed the smell right when enterin. No problem from that. Slight coughing when she had a smoke when I was in the kitchen too - for the next one I stepped outside.
Then we ordered some food. I took a chicken kebab with french fries (yeah, health food, indeed ;D ) and even coke on top of it! It was good but I couldn't eat it all, because it was swimming in curry powder! Also the side sallad was with vinegar dressing.
When I drove home I started coughing. A lot. And I could still feel the curry, I felt like I was breathing it! My throat started to feel raw.
At home I tried eating something to dilute the curry, with no avail. Also, I looked up the histamine foods - CURRY IS HIGH WITH HISTAMINE >:( also potatoes, vinegar, coke, chicken... ouch!
Today my throat still feels raw and im cough-y. Just wondering if I'm coming down with the cold my daughter had last week, or is it the crappy food and/or all the coughing that has damaged my throat? I don't feel like having a cold.
mbr22m
I'm in Finland, so an US website doesn't really help me :( At the moment I don't have problems with my own products but with what others wear. I've been forced to be careful with my own products already since I was a teen and before. About the ELISA test... the public health care doesn't perform those tests here. There is one private clinic that does, so I guess I need to count my pennies and go there if this saga continues worsening :( The "normal" allergy tests show nothing for me.
Nomad
It may be that the house you're visiting has something wrong with it - like mold in the structures. Other's don't get sick (yet) because they're not as sensitive as you are. Being exposed to mold usually gets worse and worse over time and gradually leads to other serious problems. Maybe it would be in order to consider another place to stay in the next time you go there...
The entire histamine sensitivity and MCAS issue is soooooooo complex I get totally overwhelmed when reading about it. Even the lists about foods with high levels of histamine contradict each other. So I guess it's a trial and error here, and I'm so not good at it.
I take my antihistamine in the "morning" (that is, when I wake up in the afternoon ;D ) If i'm having a bad day and/or extra exposure for chemicals/histamine foods, would it help to take another antihistamine in the evening?
I think I need to start another thread concerning just the MCAS...
Do you have a HEPA filter at home? I live in FL and had to get one for our AC. They also sell small, inexpensive hepa air purifiers for your bedroom so you can at least have one while you sleep.
For the Elisa act test, I had to save up to because my insurance wouldn't cover it, but it's worth it once you find out. I also had a strong Igg reaction to xylitol! >:(
Eija,
I feel your discomforts. There have been so many comments and suggestions on this thread, I vacillated between commenting or keeping quiet.
You are young. I recall (and you will remember I remember :) ) when you were still riding + caring for your horses. The reason it stuck with me is I have a classmate (I mean since Kindergarten) who lives in our hometown; she has Sjogren's too. AND ..she is down to two horses and a donkey...and no help. We have mild winters in Texas...she is in the gulf coast region and I live in N. Texas now...but as you know, care is necessary daily all year long. She does wear goggles. But for the life of me, I can't believe she has no breathing issues. She will complain of sneezing attacks, but usually in the evening. She lives in an old home where she has lived for decades. I've wondered how both of you could tolerate reactions to oats, hay, etc. Not to mention dirt and unfinished wood in barns , etc.
And then me. I was told decades ago the reason people have such a time with allergies is they change so often. Those who have shots, or take antihistamines, can get some relief some of the time. When my dry mouth escalated (in my 60s) I cut my antihistamines in half...and believe it or not...it helped. FYI: I took a daily antihistamine for about 40 years---except for two short periods I was on allergy shots.
Enough about that...I am not gonna tell you my allergy and sensitivity history. I am going to tell you I recently made three trips back to the gulf coast within 11 days. Yes. I stayed with a friend who is an auctioneer and holds estate sales. One evening we walked out to go eat...and my body was swarmed with mosquitoes. btw: My small area north of Dallas HAS found zika. So I'm a bit nervous. My ankles and top of my feet were covered in bites which were rising like boils. THEN my forehead began this intolerable itching. Two bites and I looked macrocephalic. (no offense) I told her to go by a drugstore...and she said to check in her console of the car...and if I couldn't find Benadryl she had some in her purse. We arrived at restaurant...and she retrieved TWO Benadryl packages: a bottle and a blister pack of them. I didn't even ask why. I popped a couple....and within a half hour all but one on my ankle had diminished in size and itchiness. We got back to her home, and she started sneezing. BY HER SINK in the kitchen there was a blister pack. Went to her sitting room and by the chair I sat in another blister pack. I finally asked. She said from working in the houses where they have to go through EVERYTHING and once finished, sit in the house for 2 days to sell it all. They wash bed linens in the house if they are salvageable, otherwise ...everything is as is. She told me they ALL (this means nationalities, races and ages) pop Benadryl all day long all the time. THEN...I realized she was a throat "clearer". I had told her about using mucinex like we do...but she said it was just something she "had". Well yeah: allergies to dust. The thing she told me is the worst culprit is upholstered items. Unless these forms of furniture (this includes our mattresses) are vacuumed (with a strong vacuum) regularly to keep the "top layer" of dust off/out, they are toxic to people like us.
I built two energy efficient homes in a 20 year period. The first I had carpet in part of the master br and in the master closet. The second one...zero carpet. Then I moved to an old home...and began just getting carpeting and old window covering out of the house. I cannot get all the stuff out of the walls...but I did have my vents , return air, and the A/C ducting cleaned and "cleaned for mold/mildew" (who will ever know?). I have not suffered as badly as I tht I would here re: allergies. the thing is...now dxed with SjS I tht it was because I had less mucosa period. Doctors say no.
The hypersensitivity? That's another can of worms. For years I tht that's what made my eyes hurt. I haven't smelled in years. BUT..I can feel sensitivities to allergens in my eyes. Good thing we have tons of eye treatments at our fingertips.
The bottom line: you can take Benadryl or other antihistamine but then? You will suffer the drying effects -> more water consumption -> up all night peeing -> miserably tired the next day and then start all over. My friend swears by goggles...but that doesn't save your bronchioles and lungs. The thing is, I have yet to find an ENT who understands SjS enough to mention this topic. So...I live with it. At age 74 all my symptoms are decreased. I honestly believe it is because I don't work in schools anymore and I am seldom in crowds. Hard to do when you are still raising children, and managing a home. AND cooking for them. Oh my.
Good luck...hope this doesn't depress you,
Sjoldier c3
We do have a fancy air purifier for the bedroom there, but I have a cheaper one in another room, that I think I actually prefer. Both have HEPA filters. I do better when I run them all the time.
AND at one point I had a huge fern plant and I do believe I did a little better when the plant was there.
I have a brown thumb and the plant died.
Now, I have these two other plants with me in my bedroom back home. It is amazing to read how certain plants are well known for cleaning toxins in the air. I will try to post a link.
I will take them with me when I visit again as well as run the heap filters 24/7.
Mosquitos love me and this summer I've been scrubbing myself like crazy in the shower because I understand they like perspiration, so I figure if one misses a spot, they will zero in on it. I also had my yard sprayed monthly this summer. If I'm going out, I spray my arms and legs lightly with a natural product and give a quick tiny suirt on my clothing with a DEET product. Last summer, I got badly bitten, had bad welts, and had to use a strong cortisone cream and take Benedryl. My bad reactions seem to be worsening?
This topic is very interesting. I read some of the links and will read more. Thank you.
Might be of some help to someone:
https://en.m.wikipedia.org/wiki/NASA_Clean_Air_Study
It might be wise to purchase some of the face masks--like surgical masks and wear them when you go outside or to suspect places. I wear masks a lot. I assume that anything near gardens will have bacteria and molds, mildew, etc and don't even chance going without a mask. I have an immune deficiency anyway so don't want an infection.
In this day and age people don't pay much attention when someone wears a mask as so many people on chemo for cancer need to wear a mask. I carry masks in my car so I always have one and sometimes I even fold one up and put it in my jean pocket if I am going somewhere that could seem like trouble. Good luck. Irish
I also have a few masks and keep one in the car.
As for the curry... Look up salicylates. Sals cause asthma for me. It's a known cause of asthma and some have Samter's Triad. You can look that one up too.
So many of us suffering from chemical sensitivities
I always wonder is this part of SJS or a separate disorder such as MCAD?
I'm still awaiting my appointment to get properly diagnosed for mast cell disorder.
As far as allergic symptoms in a particular house/room, there are many allergens indoors
from formaldehyde offgassing, mold and more. Airing out the house does help as does other things
mentioned in this thread such as specific plants and a good air purifier like IQair.
What helps the most is figuring out what you're allergic/hypersensitive to.
Allergy testing doesn't always show this as we don't always have "normal allergies" behind these symptoms.
Eliminating a source of formaldehyde solved my intermittant eyelid swelling and drooping problem
and cleaning an air conditioned of mold has improved my red eyes symptom at work.
I think MCAD has many possible causes. If we are damaged by chemicals or mold or bacteria, then we can get MCAD and/or Sjogren's. Something has to "trigger" the DNA. When that happens, we can end up with many different illnesses or autoimmune problems.
I have the same issues..this summer heat does a number on me. Im usually in bed the entire summer..Winter is much better for me. Im looking into a home air cleaning unit right now. I heard of one that attaches to your HVAC with an ultra-violet light.
I cant take antihistimes, only a few natural supplements that are less drying. Im on 12mg of steroids daily, but they don't seem to help much, though, without them, would probably be much worse.
Guess we need to live in glass bubble as they say..
I hope you can find some answers.
Gursie
Jazz- either that or the other way around: SJS could trigger the MCAD....
Gursie- Can't believe even steroids don't eliminate this issue!
I can't take the anti-histamines either, though the times I've tried they didn't help much anyway.
Quote from: Sharon on August 19, 2016, 05:51:26 AM
Jazz- either that or the other way around: SJS could trigger the MCAD....
-
For me personally, I think my Lyme disease caused both.
Quote from: gurs on August 19, 2016, 05:24:56 AM
Im looking into a home air cleaning unit right now. I heard of one that attaches to your HVAC with an ultra-violet light.
I have one of those. I think it helps kill bacteria and viruses, but mine does not "clean" the air as far as removing particles.
I have read all the posts in this thread - thank you everyone.
At the moment I'm so tired and brainfogged and in the middle of life's curve balls that I just can't manage answering. Also, trying to figure out histamine intolerance and MCAS etc just sinked me in a deep desperation. Too much, too difficult. Still considering the doctor issue - I just don't have enough energy for that either!
Maybe some day. Right now I'm just trying to make it day by day.