u/Bendybug

My baby bluebirds all fledged on Friday. Do I clean out the box now or wait? Once a day since then, dad seems to be coming back with food for nobody. I wasn’t sure if I clean it out or wait to see if they’ll have a second brood.

I’ve been trying to find the right meds for my ADHD for nearly two years now. I’m so sensitive to medication and it’s been slow going. I was doing pretty well but was hoping for a tad bit better and we decided to up my meds by 5 mg. Well, it appears to have set off a flare for me. Rash on my arm and legs (tiny pinprick spots on my legs and flushing on my arms). It was also around the same time that I was exposed to a known food intolerance, so who knows what the catalyst really was.

I went off my ADHD meds late April and starting doing H1/H2 blockers again and added ketotifen back in about a week ago. My functional med doc doubted it was the Adderall so I started it back up annnddddd my legs are hot/flushed/itchy/spotted again. I’m so frustrated because I thought/hoped it wasn’t the med and I even tried my “old” dose and still having issues.

I’ve tried Adderall (XR and IR), vyvanse, and Wellbutrin with no luck. Adderall had been fine until now.

Has anyone found a med that works for them with MCAS? I know it’s variable person to person, but it’s really hard for me to emotionally regulate and focus without something on board.

My provider isn’t sure if it’s MCAS or hAt, so that may make a difference for me. But I have elevated tryptase basically always and have elevated histamine during flares. I was on ketotifen, but was able to come off about 6 months ago. Unfortunately, I’m in a flare again and need to start it back up.

My doc said I might be able to just use it as a bandaid during flares then come off again once I’m settled.

What’s your experience? Are your meds long term or are they just to get you through figuring out your triggers?

My MCAS has been very well controlled for a while now and I was even able to come off my ketotifen months ago with no problem.

I have been gluten intolerant for 10+ years and unfortunately was given gluten back on Easter. Since then, my system has been going haywire. I’m currently covered in hives, despite it being almost a month past Easter. Asked to have my tryptase and histamine tested for reference and my tryptase is at 11…which is even higher than when I was diagnosed.

I’m so angry and upset about this because I’ve been doing great for over a year and now I probably have to go back to a very restricted diet, maybe back on the super expensive ketotifen (which also made me gain weight).

If anyone has been in this scenario, how did you manage your flare and did you go back to baseline? If so, how long did it take?