Hi, I'm a pretty new member here. Previously, I've just posted in the new members forum and triggers forum. I've been reading a TON of posts, though, and have been learning so much! I am so thankful to have this source of information and support.

I haven't been diagnosed yet (waiting on appt w/Dr Afrin), but it is looking like I likely have MCAS. I have hyperadrenergic POTS and have tried almost all meds for that and they have been unsuccessful. I started trying an antihistamine regimen a couple months ago, and more recently, a low histamine and low salicylate diet and have found great symptom relief between these two. That said, I am still having periods of debilitating symptoms (like right now: massive fatigue and sound sensitivity, chest pain, facial flushing, irritability).

I've been following a med regimen that seems to help a lot for the past couple weeks and have, over about the last week, started taking an extra H1 here and there when my symptoms increase. However, over the past few days, I've had to take LOTS of these extras and they don't seem to help that much.

Here's my current regimen -
Around 8am
generic Allegra, 180mg
generic Zantac, 75mg
generic Claritin, 10mg

Around 6pm
generic Allegra, 180mg
generic Zantac, 75mg
generic Claritin, 10mg

Throughout the day, I'll alternate an extra Allegra and Claritin when my symptoms increase. I really don't think this approach is working very well, as my symptoms don't seem to decrease for very long after taking an extra H1.

Last week, I tried increasing my Zantac to 150mg BID for five days, but I got pretty uncomfortable bloating and when I decreased back to 75mg BID it resolved.

I also tried taking generic Benadryl, 50mg, the other evening. The next morning, I felt pretty awful. It felt like the sleepiness/slowed reaction time I usually have about an hour after I take just 25mg of Benadryl. Interestingly, I didn't experience that the night before. Not sure whether I should try that again.

If anyone has any ideas to share, I sure would love to hear them. I'm desperately searching for some additional relief until I can get to see Dr Afrin.

Have to agree on the noise sensitive irritable and flushing as a baseline. Also tinnitus.

Might be worth adding a mast cell stabilizer to the mix. I'm sure Dr. Afrin will have good ideas for you.

I think trigger avoidance is big. I went low histamine/elimination diet for about 9 months and am just trying to reintroduce new foods now,

good luck

PJP and Ana, thanks for your responses! While it feels good to not be alone with the sound sensitivity problem, I sure am sorry to hear that you have it, too. For me, that trigger is very difficult to manage. One of the sounds that can set me off is my 3yo son's voice. Doesn't have to be loud or weird sounding, just his regular voice. Blargh.

Kim, thank you for your response, too! The low histamine diet is overwhelming for me, too. I'm also doing a low salicylate diet, as well, because I seem to be reacting to that, as well. I just made the BIG decision to give up coffee yesterday, as I have been reacting after drinking it. I'm not going to lie, I have cried about eliminating most of my food options. Its rough. Necessary, though, so its gotta be done.

Thank you for sharing the info Dr Afrin shared with you about dosing and taking H1+H2 at the same time. I am going to start a new approach with my regimen today to see if it might help. Thank you so much for this option to try!

@pepperpots

I'm typing with earplugs in right now.  The college age kid next door has been outside shooting a basketball into the hoop alone for over an hour.  No one else in my house even notices it.  I reached a breaking point 15 minutes ago.  

Also, coffee is my favorite thing in the world.  I gave it up for a short while ...until I was stable.  I take zantac.  If I do my meds religiously and don't eat Italian food or processed or any triggers I can drink coffee all day.  Coffee with milk is one of my staples now.  Not good for blood pressure but oh so yummy.

Also back to the noise.  I have 4 kids.  3 boys first.  I used to work out of my home with a friend and was always telling them to be quiet.  My friend would say they really weren't making too much noise.  Any noise is too much for me.  LOL

I am also noise-sensitive.  I am very sensitive even when I am at baseline, but when I am having a reaction, almost all noises are very painful and create extreme stress.  I wonder if there are some pathophysiologic mechanisms we share with migraine patients, because migraine patients are very sensitive to sounds and light when they are having a migraine.