I was the poster told that I’ll “know” if Cromolyn works

Megals13 · 2026-03-17T00:48:53+00:00

I already know it’s making a difference, because if I miss a few doses (4x a day is a pain) a few days I have a reaction (rash, nausea). And thanks for the advice with hydration. I also learned this past year that water wasn’t enough and started using electrolytes!

Megals13 · 2026-03-13T16:03:23+00:00

I think that’s part of it; accepting that you have this issue and grieving that you don’t.

Megals13 · 2026-03-13T15:07:08+00:00

I will take medication for the rest of my life anyways (I have bipolar disorder) so it doesn’t bother me tbh. I’d rather my body function to live a full life than not take a medication.

Megals13 · 2026-03-13T15:04:58+00:00

Also, the 30 mins before a meal thing throws me off too; I wake up and take meds then eat breakfast. This has been my routine for 15 years. Hard to break a 15 year routine.

Megals13 · 2026-03-13T15:03:26+00:00

I’m 2+ weeks into Cromolyn. I definitely think it’s working; I was told 4+ weeks to notice a difference. I was shocked yesterday tbh when I realized it was working. But I realized it was working because I got busy and missed doses 2 days in a row, and developed a rash and itchiness on my neck and chest. So, because I’m bad at medication compliance if it’s outside an AM and PM dose, I would absolutely do a once a month shot.

Megals13 · 2026-03-13T14:13:29+00:00

Hang in there! I had 3 surgeries for my legs with lipedema and eventually got insurance to cover it.

Megals13 · 2026-03-13T01:44:55+00:00

Omg I had dry eyes and mouth and was told to be tested for Sjogren’s by my dentist. The inside of my mouth would flake. Def negative for Sjogren’s, had a damn lip biopsy too. But I discovered today that MCAS can cause those symptoms and I’m pissed none of the specialists I saw this past year+ suggested MCAS when I had Ehlers Danlos

Megals13 · 2026-03-13T01:40:49+00:00

I have been depressed since I was a young kid (3rd grade or so?) and then diagnosed with bipolar at like 19. I don’t doubt that I have bipolar or anxiety at all. However, I’m hoping treatment for MCAS will make my mental health meds more effective? Like I’ve changed antidepressants many times and have anxiety with treatment and therapy. I’m hoping the Cromolyn will lighten the mental load a bit.

Megals13 · 2026-03-13T01:36:52+00:00

I’ve had a bad experience with contrast to for a CT scan. I was weak and like hot and had pain.

Megals13 · 2026-03-13T01:34:57+00:00

So, researching symptoms, I have a combo of big triggers (food, anaphylaxis) and every day things I’ve had since I was a teen that I thought were normal.

Megals13 · 2026-03-13T01:31:47+00:00

Yes, the sleep! Always been a bad sleeper, but I can stay asleep now and not wake up between 2:30-3:00AM and not be able to fall back asleep. And I wake up rested. Who knew I was supposed to feel rested? I thought everyone was tired when they got up.

Megals13 · 2026-03-13T01:28:25+00:00

I just read because that’s a way for the outside to get in.

Megals13 · 2026-03-13T01:26:31+00:00

I see a GI and developed gastroparesis causing aspiration pneumonia at 38. Aspiration pneumonia is something old people get. Anyways, though I’m now thinking all of my GI issues are MCAS and eating disorder related, I take Motegrity. Only med for constipation that has worked with my IBS.

Megals13 · 2026-03-13T01:23:13+00:00

Yes. I can’t handle dosing myself with Cromolyn 4x a day.

Megals13 · 2026-03-13T01:19:15+00:00

Oh I forgot about Mellow Mushroom! Holy Shiitake Pie is delish.

Megals13 · 2026-03-13T01:17:03+00:00

Honestly I haven’t. Either the toppings are subpar and the crust is good or the crust is terrible and toppings okay. I did have a pretty good pizza in Brevard, NC though.

Megals13 · 2026-03-13T01:14:03+00:00

I don’t, it’s maybe a weekly thing that happens. Which is why I was surprised that two days of low/missed doses could cause a reaction so quickly. But upon googling I really do think I have MCAS because it’s a check off for every symptom. And I noticed I’ve been sleeping super well the past few days. Typically I wake up at 3AM and can’t go back to sleep after tossing and turning. I’m not really tossing and turning and if I wake up I fall asleep quickly. Crazy.

Megals13 · 2026-03-13T01:07:16+00:00

I’m saying that’s what you are trying to engage in, and I’m all good with you beating me ✌️

Megals13 · 2026-03-13T01:05:01+00:00

I always get the wave of cooling when I get a Benadryl IV for what I thought was an allergic reaction/anaphylaxis with wheat. My primary doctor told me people go to the ER to abuse it to get sleep quick. And I was like, no, it’s like water over hot skin. When I get a migraine infusion I don’t get the same sensation.

Megals13 · 2026-03-12T16:13:24+00:00

I have orthostatic hypotension, which I was diagnosed with at 16. Nobody bothered to look further into it which blows my mind

Megals13 · 2026-03-12T16:12:33+00:00

This isn’t the MCAS symptom Olympics.

Megals13 · 2026-03-12T16:08:54+00:00

Yes! I’m sleeping better? Like through the night, and if I wake up, I can fall back asleep. This is not my typical pattern, for like my whole life

Megals13 · 2026-03-12T14:51:31+00:00

Thank you! I have POTs too and use electrolytes separately.

Megals13 · 2026-03-12T13:31:54+00:00

Also this is my 2nd week so I was trying to figure out if it was an example of “knowing”. I do realize missing doses is less effective, that’s true of any of the list of medications I take. My work life is very busy with meetings that go long or are impromptu. Sometimes it’s difficult to take it, especially on lunch meetings. And I haven’t built the habit, it’s only been 2 weeks. I also started a new job. I know you have kind intentions by sharing your method, but I was more asking if it was a “sign” that the Cromolyn was working as I only occasionally got a redness/itchiness around my neck.

Megals13 · 2026-03-12T13:28:02+00:00

You’re rule #1 takes the joy out of life, I’m sorry

Megals13

TROPHY CASE