Hi Susan,

Unfortunately, there are numerous causes of swelling.  If yours is not responding to antihistamines (even a little bit), then it's probably not caused by mast cell degranulation.  It could be hereditary or acquired angioedema... it could be related to your kidneys or your heart...  Has anyone in your family experienced this kind of swelling?  

Also... remind me... are you taking an ACE inhibitor?  Those alter your bradykinin levels, but they give some people angioedema.  

Heather

I thought about this some more, and have a theory. I have some genetic issues that means my body cannot easily clear toxins. I do not make enough of the active form of B12, certain antigens are not recognized by my body, and are therefor not removed, and I don't make enough glutathione. This all means toxins can take a long time to clear from my system.

On Sunday I was doing a 24 hour urine test for histamine and 5HIIA, and was trying not do do anything that would alter the results artificially, so I didn't do some of the things I might to help with reactions. I noticed even though I was drinking plenty of water, that I was hardly peeing any out. I was actually worried about whether I would have enough for the test.

On Monday morning I finished the test, and was itching like crazy all over. I had some places I was getting raw because I couldn't stop itching completely. Because I was finished with the testing, I took an extra Zyrtec for the first time. In the past, I hadn't noticed the antihistamines helped with itching, but with three Zyrtec in one day, it really calmed it down.

I went in to work for the afternoon, and was having a lot of flushing. I almost always flush the whole time I am in my work office, so there must be something I am reacting to in the environment there. I also found my feet hurting more and more, and swelling throughout the day.

I didn't take any more antihistamines, because I was already at a higher level than ever before. I had to keep increasing my Zantac dose, because I would start to get symptoms back in three or four hours, and this was the first day I had taken three Zyrtec.

My legs, feet, and hands hurt all night and into today, and I had disturbing dreams, and didn't sleep well. I often have this after working, and I know for me it is another sign of an exposure.

However, the itching has stayed pretty good today, and the tachycardia, shortness of breathe, chest pain, tachycardia, gut, and other symptoms the antihistamines have been working with stayed good today.

I am wondering two things. Could it be that as whatever I am reacting to works its way out, that area reacts? Skin and lungs are two ways the body releases toxins, as is the GI tract. If my system doesn't release toxins well, maybe it takes a long time for things to work their way through.

Second, maybe I am still not high enough in my antihistamine doses. So far, I had been thinking they wouldn't help the itching, but yesterday, with higher dose Zantac and Zyrtec, it virtually stopped, going from severe itching and rashing to almost nothing in a few hours. Before, I didn't think antihistamines did anything for any of my symptoms, until I read about mast cell issues, and tried higher doses. Once I took the higher doses, two years of terrible shortness of breath, chest pain, and tachycardia were gone in hours. Maybe I need higher regular doses, and then it would hold off the swelling?

This is all just theory, as I don't even know for sure I have issues with histamine or mast cells, but would it make sense, as far as how these things work?

Lisa, that is such a relief to know!!! Changing opiod medications is very unpleasant, as I have cause to know. When my insurance dropped my first pain medication, I was switched to methadone, which can be used for pain as well as to work with narcotic addiction.

It made me absolutely miserable! My abdomen hurt all the time. It helped pain, but it just wasn't worth it. I finally got my doctor to switch me to morphine, and everything was SO much better. But the transition, both times, was very hard. I wonder now if I was reacting to the methadone?

Each drug hits different opiod receptors in the body. So you have to wean up and down, even when you are just changing over to another drug that should have equivalent levels of pain control. And you go through partial withdrawal until you are stabilized on the new drug.

This is how I know for sure I can't just stop. But it is a relief to know it may  not be a problem with mast cell degranulation.

Sandi, thanks for the ideas! My doctor suggested Alka Seltzer Gold for reactions, I wonder if it is similar to the carbonated water? It isn't the Alka Seltzer with  aspirin, it also alkalizes the system, and actually tastes a lot like carbonated water. I didn't think about it for the swelling, but I'm going to give it a try.

I have found it makes a difference if I am taking the antihistamines at regular intervals. That is what made me notice the Zantac at 150 mg was not enough. It would stop the chest pain for 4-6 hours, and then it would come back. At first I was taking an extra 150 at that point, but realized I might do better taking more twice a day. Since switching to taking 300 mg, I am not getting the break through chest pain.

I thought I was taking enough Zyrtec at twice a day, but maybe not. I may need to pick up some Allegra. Deborah mentioned it, and I was thinking I might see if adding that would do more good. Sometimes taking different meds, even of the same type, treats more symptoms. It is just so counter intuitive to me, to take so much! It makes me a little nervous, as I don't have a doctor overseeing this, just a couple that said it is OK to try.

Are you taking the Allerga in addition to the Zyrtec twice a day, or instead of one of the doses? Sorry if you already mentioned this. It is hard to keep track of everything.

I'm really hoping something comes through with my allergist in my testing. All the tests are done, now I have to wait for results.