u/eatinvasives

Would appreciate any and all advice from others with asthma as well as professionals etc.

I developed breathing issues basically overnight in January, early 30's female with no history of asthma for myself OR any family history. Told doctor about the problems and they brushed me off until I demanded more testing. Went to the ER with breathing issues at one point even.

I had a Pulmonary Function Test that said I was severely asthmatic.

I also did a methacoline (spelling?) challenge. First dose was saline and my breathing dramatically changed within less than 2 doses of the meds.

Xray in March: Completely normal
EKG in March: Completely normal
Diagnosed with sleep apnea and started CPAP 6 months before I developed severe asthma.
Labs: All completely normal

I have tried:
Albuterol (gives me anxiety attacks which make me not able to breathe). I tried this as the maintenance and rescue per my pulmonologist
(Considered trying the alternative to Albuterol but I was told it has the same issue as Albuterol in terms of heart racing)
Symbicort (didn't help at all)

Tried taking antacids since we wondered if it was GERD or acid related, and no change.

Also tried taking anxiety meds. On a daily basis this does nothing but it does help if I'm panicking from an asthma attack, so I have a few as in case of emergency.

I was in the process of weaning onto and off 2 meds around December. I got off one in early december and was only on the other one in early december. I suspected this might have been causal and (per doctors recommendation) I stopped taking the med for a few days, and there was absolutely no change in breathing.

No new pets, illnesses or infections around the January time. No home renovations, no new heaters, no new chemicals. No smoking or vaping history. No occupations or hobbies that involve significant dust or chemicals etc.

Symptoms:

Shortness of breath constantly. Gasping constantly. Sometimes wheezing but not a ton. When docs listen to my lungs they say they sound great.

The cpap used to be the only main relief but in the last few weeks I'm concerned the breathing issues are getting worse because the cpap is NOT helping anymore.

Sometimes it feels like someone is sitting on my chest or that my lungs are only half inflated. More recently I've also aquired a new symptom that my throat (right on the adams apple) will feel like it is closing up. To be clear, neither of these symptoms are 24/7/365. But I experience either one for at least a bit every day, for multiple weeks/months now.

Havn't woken up at night with breathing issues but I'm a heavy sleeper. I had one time where I took the 4 puffs of Breztri as prescribed (2 in AM and 2 in PM) AND I took Levalbuterol right before bed, put on the cpap and still was struggling breathing. That was scary but I slept with the inhalers next to me and told my spouse about the situation at the time. I woke up better in the morning but about the same as most days.

Chest pain. My ribs hurt, all the way around my body, on and off, pretty much constantly. Sometimes chest pain above the ribs/breasts but not as often. Today I'm having sharp pains in the chest when I inhale.

Patterns and triggers:

virtually no clue. I did allergy testing recently (before diagnosis) and i'm allergic to pet dander/hair, dust mites, mold, ragweed, feathers, mice, etc. But I'm pretty much struggling every single day, regardless of weather or anything else. I'm pretty sure scents are fine? But I do have a strong sort of visceral response to smoke and occasionally to scents but that's rare. It's more of a...disgust? It might honestly just be a fear that it WILL trigger since I still don't know what my triggers are.

Currently my daily life is very severely affected. I think I have eczema or psoriasis. I had a history of sinus issues and was taking an allergy nasal spray and still had significant breathing issues even with it.

Currently on:
Breztri - this barely helps. Still suffering greatly.
Levalbuterol - I hate it. It barely helps at all. I was told to take 2 puffers every 4 hours as needed. I clarified that I need it constantly and they said that's fine??? I take 2+ puffs about 5 days out of the week. some of those are 4 puffs 😞 and the days I don't take it isn't because I didn't want to, it's because I didn't have access to my inhaler that day (lots of stuff going on which means I don't always have it with me currently).

Next steps:
Meeting with my pulmonologist next week and would desperately like advice for what to say, what to ask for, etc. Considering a CT scan, a stress test, etc.

The main issue is I will have no insurance or be very underinsured for about 2 months. I have a big longer until that happens though.

Edit:

When i go to my dr appt soon I am going to ask about:
COPD, Vocal cord dysfunction, more about allergies, pulmonary embolism, heart ultrasound, stress test, coronary heart disease, and EILO.

My kid came from school a few weeks ago and said that there was an incident where a boy ruined another kid's lunch before the kid ate any of it. My kid told me that the affected kid talked to the teacher about it, and I happend to mention this story to another parent of a fellow preschooler in the class and they said their kid has talked about how the specific boy has been bullying people all year long.

For context, the boy is white and started preschool this year. We are in a mostly white town that is decently affluent. Apparently a kid got kicked out of preschool last year for doing way less, and that child was black. There was also at least one incident where another kid of color was bullied and targeted exclusively by a large group of white children, and the children were able to stay the rest of the year.

My child was being affected by the boy's behavior for awhile but says they're on okay-ish terms.

I was bullied severely as a kid so maybe I'm sensitive but from what the two kids said (mine and the friend) this is ongoing and only getting worse. The boy is still in school and I'm concerned the school is pushing this under the rug.

How do you report bullying like this when it's at a private preschool? Can I e.g. make a google form for anonymous bullying and pass it around the parents and see if others have experienced harrassment from this specific child as well?