Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> Hi all! It's been awhile! But I'm struggling (still) :( http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1382058813 Message started by brigitte on 10/17/13 at 14:13:33

Title: Hi all! It's been awhile! But I'm struggling (still) :(
Post by brigitte on 10/17/13 at 14:13:33

Hello friends. I haven't been on for awhile. I've been trying to work through this mast cell mess, looking for triggers and trying to pay attention to my body. Unfortunately it's not easy. I know I'm sensitive to fragrances, and I believe all plant extracts, but other than that, it's like trying to find a needle in a haystack.
My mind is not super focused, so I'm sure I'm not investigating in the most efficient way, but I'm trying to figure out my food triggers. It seems like the more I try, the worse I feel.
I was finally diagnosed MCAS by Dr. Chin in August. I first tried cromolyn. I started slow, like 1/4 (or less) vial in water everyday for three weeks. But I was very sick and vomiting the whole time. I emailed Dr. Chin and he said to stop and to fill the ketotefin script her wrote me. I was so excited to try it. I thought "this is it! This is going help!". But it didn't go that way. Instead my entire face swelled up. Definitely an allergic reaction.
I emailed Dr. Chin and he said to stop for a few days, then try cromolyn again, ONE drop a day. I started that on October 3rd. I've been half-assing a journal (I'm working on it!) all I see is that on the 7th I had a really bad day. I upped the cromolyn to 2 drops on the 8th. For a week a did pretty darn good.
But everything went south last Saturday night. I got super irritable and just knew what was coming. Since Sunday I have felt terrible. My stomach hurts, my brain is super foggy, I'm depressed, headache, fight or flight feeling. All of it :(
I just don't know what to do anymore.
Is it possible that I can't do cromolyn or ketotefin?
I am so tired of having these long episodes. They're wearing me thin. Maybe someone will have an idea for me?
I hope you all are doing well :)

Title: Re: Hi all! It's been awhile! But I'm struggling (still) :(
Post by sarahkay1111 on 10/24/13 at 04:23:52

Hi Brigitte,

I'm sorry you're feeling so crummy right now :'( What medications are you taking regularly?