ARGGGH! I am so frustrated!

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petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 10/5/2009 9:20 AM (GMT -7)   
So last night I'm laying in bed watching tv and eating a salad and my face starts to itch and then my eye starts to swell. I go the bathroom and my face is a little puffy and I start coughing and can't stop. Take 2 benadryl more coughing I'm seeing shooting lights take the epi pen and head to the er. The swelling went down but the coughing wouldn't stop. Now my airway was clear. In the er I got the usual pepcid, solumedrol and benadryl along with a breathing treatment. Lungs cleared and I was sent on my merry way. This happened to me 4 times in July when I happened to be in the hospital for something else. Two times with the coughing another 2 times my tongue and throat swelled. This also happened twice almost 2 years ago. I do get allergy shots for seasonal stuff. Each time that this has happened they have tested me for all sorts of food allergies and hereditary angio edema. Everything comes up negative. I am so frustrated. I can not accept that these are just random attacks and we will never know what causes them. Has anyone else had this experience?
Jodi

Symptoms of Crohns, Lupus and Hereditary Angioedema but not the diagnosis


Red_34
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Date Joined Apr 2004
Total Posts : 23423
   Posted 10/5/2009 10:09 AM (GMT -7)   
Have you been tested for a sulfite allergy?
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petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 10/5/2009 11:23 AM (GMT -7)   
Not that I'm aware. But when I do have these reactions they have been completely random. There is no consistency to what I am eating or doing when they happen.
Jodi

Symptoms of Crohns, Lupus and Hereditary Angioedema but not the diagnosis


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/5/2009 1:10 PM (GMT -7)   
Are your anxiety levels up before they happen? There has to be something in common, it's just
trying to pin point it...Sure hope you can find your trigger's soon...
Keep us posted and maybe start a journal and record everything, wish
I could offer up more advise...
soft hugz for now
((((((((((((((((((((((((((((((((((Jodi)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
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* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/6/2009 7:18 PM (GMT -7)   
Sulfite allergy symptoms can seem very random - there are lots of sulfites all over the place (air, food, water). Reactions depend on exposure over the previous 48 hours plus your individual sensitivity level. So you could eat the same thing for 3 meals in a row and not react, but if you eat it again the next morning, you may react because your sensitivity level has been reached with the 4th meal. Or you could eat those same things 6 meals in a row, then go out side and get sulfur dioxide fumes from car exhaust and factory emissions, and then get the reaction because the air pollution outside is what triggered things for you. I had unpredictable reactions for years before a very astute doctor figured out the common link for me was sulfites.

A safe thing to try if it is possible you do have a sulfite allergy is to take a Vitamin B12 supplement (at least 1000mcg/day). If you notice your reactions occur less frequently, then it is a good bet that you are allergic to sulfites. Vitamin B12 binds directly to sulfites, rendering them much easier for the body to get rid of so they don't accumulate and cause problems. There is no upper limit for B12 (i.e., no known toxicity issues), so it is safe to take on a daily basis for years.

Also, if you do start having a reaction again, you might want to try taking 1500-5000mcg of Vitamin B12 in addition to your other allergy meds (Benadryl, etc.) and see if your reaction calms down any easier. If you are reacting to sulfites, the B12 is likely to help.

The only test for sulfite allergy is an oral challenge, which would not be safe in your case (since you anaphylax from whatever it is you are reacting to).

Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, homeopathy.


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 10/8/2009 5:17 PM (GMT -7)   
Thanks Razzle. I mention it to my allergist. Because of the "maybe" crohns, I'm slightly B-12 deficient and get shots every few months. I don't absorb B-12 when taken orally.
Jodi

Symptoms of Crohns, Lupus and Hereditary Angioedema but not the diagnosis


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 10/9/2009 1:45 AM (GMT -7)   
Glad you are getting B12 shots, but one shot per 3 months is not enough if you have sulfite allergy. Also, taking the B12 orally if you eat something with sulfites should still help because the B12 will stick to the sulfites in the food and keep them from causing a reaction. Good luck,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently trying to wean off TPN.
Meds:  Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Domperidone, Colloidal Silver (used topically), probiotics, Milk Thistle, homeopathy.

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