PepperPOTS
Tutor
Offline
Posts: 45
Oklahoma
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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.
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