I was diagnosed in 2008 with CM and thankfully had a negative BMB. However, my symptoms have increased a little over the last 6 months or so. I don't seem to have as severe reactions as some of you (I am thankful for this and my heart goes out to all of you that are worse), but I'm worried that things are just going to keep getting worse. Just had a upper endo and colonoscopy on Friday and I'm waiting for the results. There is a suspicion that mast cells will be found in my digestive tract. At any rate, I have just a couple of questions about some weird things going on:

1. I currently take Singulair 10mg in the AM, Allegra 180 (OTC) in the PM and Zantac 150 when needed. I've noticed over the last 2-3 weeks that when I take the Allegra at night, I wake up almost choking in the morning because I have so much mucus in my throat. This just started happening. When I don't take the Allegra, it doesn't seem to be as bad, but then my eyes run and itch really bad without the Allegra. Any thoughts about this?

2. I see a cardiologist next week (BTW I am 34 years old) because I've been having a lot more "heart flops" throughout the week.  It only happens once or twice a day and probably 4 times a week. Not sure why though or what's causing them. I've been monitoring my blood pressure and in the afternoons after eating it tends to get a little low. This week it's been back up to normal though. I saw my PCP on Wed and my EKG came back abnormal with minor ST-T changes in the septal lead for the sinus rhythm?? Not sure what this is going to mean.

3. I've been getting dizzy/lightheaded now for about a month and a 1/2. Some days are worse than others and it's not really tied to my BP going low.  It's happening even when my BP is normal. It happens more in the afternoon/evening, but it happens in the AM sometimes as well. Is is the histamine causing this or have you experienced this with the Singulair or Allegra? I stopped the Singulair and Allegra for 4 days and still got dizzy.

4. I stopped my meds for 4 days because my allergist wanted me to slowly start back on one med at a time and see what's causing the extra mucus. I couldn't stay off very long because by the 4th day I was feeling bad. Also, after being off of the meds for just 3 days, I started confusing words and saying slightly backwards. This happened to me earlier this year (I thought it was just due to lack of sleep) but seemed to go away when I started all of my meds. Have you ever experienced this? What causes it?

Thanks for your help!

Ramona, thank you for your response. All this is so confusing for me! I've been tracking my blood pressure for about a week and my heart rate stays in the 80s mostly and my actual blood pressure is always in a really good range, although sometimes a little low for normal for me. I'm saying this because it seems weird that my heart flopping would be from tachycardia when it doesn't seem like my heart is beating too fast at all?? I just don't understand it.

I will certainly try the allegra in the AM. Should I take it with my Singulair or should I try the Singulair in the PM? The Singulair seems to help with my fatigue which is why I've enjoyed taking it in the AM. What do you think?

Oh, and my dizziness/lightheadedness actually happens while I'm sitting down. It happens while I'm at my desk at work, while I'm sitting on the couch, while I'm riding in the car etc. It happens when I lay down from a sitting position but it doesn't really happen when I stand up. Isn't that STRANGE?? Does anywhere have it happen when they're just sitting still?

Thank you for such great info and I will definitely talk to my dr.  I have one last question, I promise  

What about the mixing words up thing.  I thought it was just a fluke earlier this year until I just stopped my meds and it started happening again.  My words don't come out right. I'll say them backwards or I'll use the wrong letter in a word. Does that happen to anyone? What makes it happen? My husband was a little concerned.

Thank you so much for your feedback!!

I sometimes feel as if I garble words also, but I can't determine if that is due to mast cells or not....Sometimes when someone asks me a question, it seems like more of an effort to have to speak and give an answer. I will be thinking the answer, but feel like I have to expend so much energy to make my mouth day them. That, I know, is caused by my mast cells!

Kim, I loved your response, that was funny and it's exactly what happens to me.  I think I will need to have my meds increased as well but it definitely goes away when I'm on my meds.

To all of you ladies, thank you so much for sharing. It makes me feel less crazy and helps me understand what's happening to my body. At this point I only have CM and it's not systemic, but I definitely have some of the systemic symptoms. I guess I will have to break down and try the low histamine diet so that I feel better  

Glad I could be of some help!! My husband is the same way and until this last episode of crazy speech (I went off of my meds for a few days) he thought it was all in my head. He doesn't fully understand the symptoms that are involved with masto so I get very little empathy or sympathy from him. I'm hoping he will get more involved with my physician visits so he can understand what happens with this crazy condition.

Keep your chin up and just know that you're definitely not alone. This site really is great!