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Fragrance Allergy and treatment?
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flowersnsun posted:
Hello:

I have asthma and have developed an extreme reaction to any and all synthetic fragrances. I already take inhaled steroids, inhalers, and daily oral anti-histamines. If I get around synthetic (not organic) fragrances I start feeling a clogging in my throat. This is followed by tightness and sometimes spasms in the throat, shortness of breath, wheezing and turning blue around my mouth and fingernails. I feel like I'm choking and have had to use both epi-pen and rescue inhaler to reverse this. Treatment now for me is avoidance of public places. The only solution an immunologist and pulmonologist had was to limit my time in public and only go out with carbon filter mask and oxygen in tow for hypoxia. I still have some trouble because the mask does not filter 100%. I have also tried a chemical respirator. My life has become very isolated. Does anyone know of any treatment to de-sensitize a severe fragrance allergic/asthmatic reaction so that I can have a normal life again? Anyone???
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Aqua14 responded:
You may want to talk to your allergist about beginning allergy shots (assuming your asthma is allergic, since you take antihistamines). I, too, used to normally react to perfumes and strong fragrances (not as badly as you do, though), but since I've been on allergy shots for 5-plus years I can now even comfortably wear some perfumes. It's really amazing to me the difference that allergy shots have made for me.

Here's what I understand as to how this works. By markedly reducing allergic sensitivity, your respiratory system isn't constantly inflamed by reacting to allergens, which makes you more sensitive to irritants like dust, smoke, perfumes. Thus, once allergy shots take effect, fragrances that used to irritate your respiratory system are no longer as irritating and your lungs can now "ignore" the fragrances.

Another potential solution which I have not tried but is worth discussing with your allergist is Xolair. Some on the board have had good success with that.

Hopefully Sonya and some others who suffer greatly from this will also offer other suggestions to you.

Hope these thoughts help in the meantime. Take care & good luck. Judy
It's never too late to be what you might have been. ~ George Eliot. A journey of a thousand miles begins with a single step.
 
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sgbl88 responded:
Hi flowersnsun,

I am so sorry to hear about your situation. I can relate to some extent, but at least I did not go into annaphlaxis. I reacted to organic frangrances as well. Cinnamon is still a big problem for me. I was issulated though.

Judy is right regarding redcing general allergic reactions and inflamation helping to reduce odor reactions as well. So treating other allergist may be helpful. Also, some people find an antihistamine to be helpful even with fragrance reactions.

There is some debate as to wether fragrance reactions are true allergies or non-allergic. Tere is research being done to determine where it actually falls. However, if you suffer with the reactions, does it really matter if it is allergic or non-allergic. If they are found to be allergic, they may be able to test and treat the allergy some day.

For social interaction I did start having different couples over to my house who were very well aware of my situation and were careful to not wear fragrances. That helps reduce the feelings of issolation and I stayed safe as well.

I hope that helps you some.

I would love to talk with you more.

Take care and God bless.

Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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flowersnsun replied to sgbl88's response:
Thank you both. Yes, I will talk to my allergenist. I'm already on daily anti-histamines. I had not heard about Xolair so will check into that. I have already been put on Astilin which I had to go off of because of getting palpitations. Inhaled steroids such as Qvair and Advair helped reduce the sensitivity a little but they gave me osteoporosis so I've been taken off of all steroids and am not being treated for severe osteoporosis. Grr! I think that's partly why I'm so sensitive. You're right Sonya in that they believe it's not allergy more sensitivity to the fragrances. I'm an RN. With an allergy, your body produces antibodies along with the immune response that causes the inflammation (and production of histamines through mast cells etc.) BUT you STILL get the immune response with this sensitivity. I'm also already on immune system inhibitors to try to minimize my immune system since i have arthritis AS which is in the Rheumatoid family. Fact is my body's immune system is just way too hyper-sensitive. For now I just limit who comes over to those close friends that have changed out their laundry soap, deoderant, shampoo and personal care products to all Free and Clear brands. It's frustrating but hopefully some day there will be research and help or at least some limits on how many chemicals fragrance labels are allowed to use and some of us can get a normal life again!
 
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flowersnsun replied to flowersnsun's response:
Whoops AM NOW being treated for severe osteoporosis...
 
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flowersnsun replied to Aqua14's response:
Thanks, will look into the xolair as well as seeing if the allergy shots will help a little.
 
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Aqua14 replied to flowersnsun's response:
One note - I thought Patanase was a lot better than Astelin, in case you wanted to try the other nasal antihistamine.
It's never too late to be what you might have been. ~ George Eliot. A journey of a thousand miles begins with a single step.
 
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sgbl88 replied to Aqua14's response:
I totally agree with Judy about Patanase and Astelin, especially the new Astelin .15%. Astelin .15% made me really stuffy. I don't mine the original which is now generic so much, but Patanase is better.

You may also talk to your doctor about trying ipatroprium bromate, and NasalCrom before going out in puplic. They did help me a lot.

The key to me getting control of my asthma was treating AERD (Aspirin Exacerbated Respiratyor Disease). You may want to discus that possibility of you having that with your doctor as well.

There is a doctor developed "Fragrance Oil"for parosmia that my help you if your doctor can find information on it and get a compounding pharmacist to mix it for you. It helped me some, but the AERD so controlled my reactivity that it was limited. It helps more now. I looked for a web article about it, but I couldn't find one just now. I will keep looking for one.

I also used a lidocaine neb for a while which helped my lungs not react so much, but I caused some other problems that I was unwilling to live with.

Just before AERD treatments I was switched from Singulair to Zyflo. I reacted much less with that. It can cause problems with liver ensymes, so expect to be tested before and after starting if Zyflo if you do go on it.

As yo can see, I did go through a lot before finally getting to the bottom of my problems and getting a life back. If you have any questions, please ask.

Take care and
God bless.

Praying for you,
Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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flowersnsun replied to sgbl88's response:
Thanks Sonya. Great suggestions. Have trie Nasal crom- no help and not on any aspirin so don't htink it's AERD. I will look into teh fragrance oil to see what that's about. Also, will look into Zyflo. I did try taking zrytec and that seemed to help a little. But, I still have such an incredible, instant throat closing asthma attack to fragrances that I guess I don't have a whole lot of hope. I have left a message with doc about allergy shots so will see where he wants to go from here. Good luck to you all and thanks for your suggestions!

God bless,
Flowersnsun
 
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sgbl88 replied to flowersnsun's response:
Hello again, The thing about AERD is that aspirin in salycitic acid which is derived from the bark of a willow tre. It is a natural plant derivative. The result is that any plant produt which contains a salicylate can trigger asthams attacks. The really sad thing is that almost ecery fruit and vegetable contains at least one salicylate. Sooooo.... you don't have to be taking aspirin or another NSAID to be exposed to the trigger. Also. AERD is thought to begin with a viral infection. Once it has started it is self perpetuating, Consequently , it doesn't require a trigger to cause severe asthma. One thing that concerns me is that your throat closes up. has anyone talked to you about Vocal Cord Dysfunction (VCD). Basically what happens with this condition is that the vocal cords spasm in reqction to certain triggers including fragrances. This could be one component of your complex reactions. Treatment is speech theray. It is very effective. I have a number of other things that I did/took that I can share with you. My allergist is amazing good and developed the Fragrance Oil for herself and her patients. Keep me posted and I will share what I can. Take care and God bless. Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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ktdid830 replied to sgbl88's response:
hi flowersnsun, I tried to post a comment to this discussion but ended up posting on the general discusion community ... please check look for this post (it is a little long to rewrite, sorry) the subject line is "fragrance allergy" asked by ktdid830.
Sorry to hear about your troubles, I too have major problems with allergies/asthma and asked about your way of dealing with them at work.
thanks katy
 
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flowersnsun replied to sgbl88's response:
Sonya:
I am interested in the fragrance oil. What is it and how does it work? Did see a vocal specialist becuase I'm a singer but the throat tightening is like an anaphylaxis. I lose my voice every time I have an asthma attack and fragrance triggered attacks don't seem to be any different. This is actually quite common in asthmatics. I'll do some research into AERD and see what I come up with.
Katy:
I have a background in nursing and worked in various fields for 13 years. When I got so bad I went back to teaching music. I have a fragrance free music studio where I teach voice and piano. It's been good. I don't have to work but if I did I'd have to do phone nursing on answering lines or something like that. For now, I still have such a trouble with fragrances that I cannot be in a public situation. The reaction was so bad last summer that none of my doctors would even allow me to spray some perfume so they could document results. But, being an RN and having worked with them before they trust me.

The problem with the fragrance "allergy" or sensitivity is the more you get exposed, the more likely the sensitivity will worsen. However, there are several employers willing to institute fragrance free policies. Check out Web MD's main home page with their article on fragrances. They have listed a couple law suits where employees were able to force employers to institute fragrance free policies. Good luck. I will also check out your other comments.

Flowersnsun.
 
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flowersnsun replied to ktdid830's response:
How do I find your discussion? I tried putting the subject line in and didn't come up with anything. Sorry..l.'m a little computer challenged. LOL!
 
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sgbl88 replied to flowersnsun's response:
Hi I couldn't find it either. If you click on her user name in the above post you will be taken to her allergy community user page. You can find her post there. Sonya
Jeremiah 29:11 For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end... Ye shall seek me, and find [me]
 
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tenacious responded:
I have been struggling with this for years always thinking it was Asthma as well. My allergist felt that since the inhaler did not help at all it may have something more to do with the larynx. I went to a throat doctor and I do have this collapsing larynx problem and it's due to stomach acid, (which I didn't think I had problems with but apparently I do) So I was prescribed stomach pills and I do think it helped improve the situation but now I can't take the stomach pills due to the side effects of them. I'll keep working with it. I don't think it's all of the problem but it did help. It's really an awful problem I know. So many don't even smell the fragrance and I'm just in misery. It is getting to be more and more common of a problem though so we are not alone.


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