Multiple Chemical Sensitivity

[gertie]

I've had MCS for many years. I assume it just goes with migraines & dys. I've been pretty much home bound because it only takes a small amt. of perfume or paint etc to put me on the floor. I'm gradually trying to get back into society over the last month but I'm only getting sicker. I was going to pay my respects at a funeral home & walked into a freshely painted room. I started shaking & all I could do was turn around & walk back outside while I could still walk.

I have a friend in a healthcare facility that I'm trying to visit weekly. Because of the scented products they use on her in & the other residents fragrances I'm so sick when I leave the place I can hardly walk & it usually takes me a week to recover. I've mentioned to her family I'm very sensitive to her lotions & sprays but they just look at me like I'm an alien. I am getting paranoid again about going anywhere because I always get exposed to something that makes me sick.

That's just a couple of bad experiences in the last week. How do those of you with severe allergies to chemicals exist in the real world? A mask only makes it worse & seems to offend people. I'm afraid to go anywhere by myself because the odds are I will be too sick to drive myself home. I'm trying to be a normal person again but I'm not physically or mentally strong enough. Any tips appreciated. Thanks.

[juliegee]

Alicia-

Help me understand MCS. What happens if you stay exposed to the offending trigger?

This sounds so much like my MCAD. When I was at my worst, a scent could literally cause me to have anaphylaxis. I would get so dizzy, high HR, low BP, shaking, etc. Is that what happens to you?

By pre-emptively taking H-1's (zyrtec in the AM and atarx in the PM, with an H-2 (ranitidine) and an anti-leuketreine (singulair) EVERY day, I'm sort of "normal." I can go anywhere without worry. I still carry extra meds and an epi-pen with me in case of an episode.

Do you take anything to help sensitize you? Or are we talking about two different beasts?

Julie

[gertie]

Julie,

Your symptoms sound similar to mine. If I stay exposed to certain chemicals for a short time I will pass out. Glues & paints are 2 that once I'm exposed to it takes me a long time to recover from. I go into a kind of semi coma that I can't bring myself out of. I have had seizures from exposures. Sometimes I get the shakes or migraines from detergents or petrol. If it's a mild exposure to perfumes or other fragrances I may only get a migraine, coughing, or heart palps. I've been 2 days trying to get over my last perfume exposure. Even a small amount of pesticides in foods make me very ill. If I inhale pesticides in a building I will seizure. I have had reactions to antibiotics, & other med's that caused my throat to close. Exposure to mold or plastic also makes me sick. I seem to be allergic to the world.

Dr. told me anytime I go out to immediately shower & wash hair when I get home. I was told avoidance is the only thing I can do. I eat only organic whole foods & try to avoid as many toxins as possible.

Allegra is the only AH I've been able to tolerate even a pediatric dose & it doesn't help at all. If I take it more than a couple days I will have problems from it. I thought maybe MCS was caused from Dysautonomia but I must be wrong. My brains isn't working very well today so I don't guess any of that makes sense.

Thanks for your reply!

[juliegee]

Wow- what a way to live . That sounds awful. I'm struck by how similar our symptoms are. Do you ever have hives, an itchy rash, GI symptoms? Look at The Mastocytosis Society Website: www.tmsforacure.org to learn more about MCAD. It'll list symptoms. See if it fits what's going on with you.

The fact that H-1's don't help is bewildering. It's almost as though your body perceives even that as an "invader." In my case, once I'm triggered, histamine floods my body (causing the symptoms we described) and antihistamines (and epi) are the only thing that will reverse me.

I hope you find answers soon.

Julie

[gertie]

Thanks for info. GI symptoms are an on going thing & has been for years. The dr's explanation to me was that a normal persons brain accepts any odor within 5 min but with me my brain sees everything as an invader or enemy & is constantly firing. The dr thought large doses of Neurontin would solve the problem but it didn't help the MCS. It did help the GI problems & migraines. I took it for about 10 years but I always felt tired & couldn't think clearly so finally stopped it.

Julie, I read a little about MCAD & the triggers are certainly similar. I have also tried the cromolyn sodium nasal solution & had some type of drop attacks as a side effect. Dr thought it must be getting thru the blood brain barrier. I still get excited if I think I might find something that would give me back my life. Thanks again.

[juliegee]

Hmmm, Alicia. I'm still struck by the similarity of MCS and MCAD. I did a quick search on the web & others have linked the 2 conditions as well. Here's a link with some interesting research to back it up:

http://alwayswellwithin.com/illness-2/mast-cell-activation/

I feel so much better since I've begun my MCAD regimen. I am dumbfounded that you have NO such relief available to you. Keep searching for answers. I pray that there is some help available to you.

Julie

[HopeSprings]

Hi Alicia. I have no idea how to cope -- I am in the same boat as you and haven't found a solution, except avoidance. I am sensitive to ALL chemicals, alcohol, most medications. If I get a whiff of any perfume, paint, cleaner, anything my ears start to ring, I can taste the chemical in my mouth, I get dizzier (can't believe that's possible), can't see straight, and get very cognitively challenge. It's a nightmare. All products I use are unscented and even some of those SMELL to me! I am not sure how this ties in to the POTS -- maybe our damaged autonomic nervous systems just can't cope with what's coming in. I feel like just smelling the stuff poisons me, like it has entered my bloodstream. When I went for help in the early 90's for MCS I was told this was a PSYCHOLOGICAL problem. It certainly IS NOT. Just wanted to let you know you aren't alone.