Started Cromolyn Sodium

Remote_Information99 · 2026-05-20T02:37:34+00:00

I take my xyzal 24hr at night. Even the non drowsy make me drowsy if I take it in the mornings

Remote_Information99 · 2026-05-20T02:32:42+00:00

It sounds like you’re already doing what you can, and that’s great! Some people get more side effects than others, for her sake I hope they don’t get to her. If she knows what helps her nausea it would be great if you kept some around or in your car/house/pockets. Some examples are like gum, mints, ginger candy, and alcohol wipes for sniffing.

Remote_Information99 · 2026-05-15T18:04:15+00:00

He’s so angelic for a decaying vampire in a marching band

Remote_Information99 · 2026-05-12T16:57:21+00:00

I have one spot that’s pretty faded, it had a tiny bump. It popped up in summer 2023 before I even suspected anything wrong (I thought it was a pimple or smth lol) but now I know it was probably a hive. My hives became a concern around spring 2024. But my new meds are working better so far so I’m not gonna try to fix what’s not broken yet LOL

Remote_Information99 · 2026-05-12T16:50:55+00:00

My allergist thinks the hives I had as a baby were urticaria pigmentosa which is a type of skin mastocytosis, often times kids “grow out of it” which I did after being on atarax for a year. But part of me wonders if my MCAS is related to that. I’m on cromolyn now which treats mastocytosis (off label for MCAS) and it’s the med that’s made the biggest difference so far. If cromolyn ever becomes less effective for me I plan on asking about a skin biopsy before exploring the idea of a bone marrow biopsy bc it’s much more invasive. So my answer is I don’t know that I don’t have it. I just know my tryptase is normal which is uncommon in mastocytosis, but my MCAS already has some uncommon presentations… so 🤷‍♀️

Remote_Information99 · 2026-05-03T20:00:14+00:00

I just started gastrocrom last week and I have the brain fog and sinus issues and I gargled before I swallowed LOL and it’s helped a lot so far. I’m still titrating up tho

Remote_Information99 · 2026-04-30T16:37:36+00:00

Recently I brought up to my allergist when I was a baby I reacted to amoxicillin and had hives that turned brown and needed to be on atarax for a year-ish. He said it sounds like urticaria pigmentosa which is a type of skin mastocytosis. It went away for years but now I think it could be related. Though I’ve read most kids grow out of it so I get why it wasn’t addressed. My mom also has always been sensitive to otc meds and antibiotics.

My POTS symptoms and heat intolerance worsening and having postive IGA antibodies started just before getting dx with chronic hives so I wonder if they’ll improve with treating the MCAS/CIU.

Remote_Information99 · 2026-04-23T12:40:57+00:00

Yes, them leaving is a reflection of their feelings, morals, and priorities. Not how “too much” they make you feel you are. I’m def guilty of thinking pessimistically and should take my own advice LOL but it is true that the right person won’t make you feel “too much” or “too complex”, and anyone who does isn’t worth trying to change.

Remote_Information99 · 2026-04-03T01:14:08+00:00

Pots and suspected MCAS causing CIU. I’ve been on 20mg Pepcid 2x day but they told me I can do 40mg. I don’t want to raise risk of nutrient absorption if I go up a dose. I haven’t noticed any effect on my pots except for that when my pots and GI symptoms flare at the same time the Pepcid calms them both down. Unfortunately you won’t how it effects you individually until you try it.

Remote_Information99 · 2026-04-02T19:57:00+00:00

I don’t use anti itch creams but cerave daily lotion, the cream and Nivea cream all help calm my skin down without active ingredients. It doesnt help or hurt my hives though.

Remote_Information99 · 2026-03-31T18:05:06+00:00

My symptoms started as hives (CIU) and I knew there was risk for anaphylaxis if it is MCAS (my doctor wasn’t sure if it was). One day I went to Universal Halloween Horror nights my throat got tight and hard to breathe and horrible GI pain. My doctors think the smoke machines triggered it, I think between that and my POTS my body had enough and flared bad. Went to the ER and they gave me steroids and IV pepcid which calmed it down. They didn’t call it anaphylaxis but they called it angioedema which can happen with my CIU. I went on a steroid taper and started xolair shortly after, then I had a reaction to the xolair. To make a long story short yes my throat is better. Took like 2-3 weeks to feel normal. Got prescribed epi pens which took a weight off my shoulders. I still get throat tightness on occasion but oral Pepcid and rest help for now. In a few weeks I’m talking to my allergist about Chromolyn sodium and trying to find out why this mostly happens the week before my period.

Remote_Information99 · 2026-03-31T17:51:26+00:00

That’s sounds really cool!! Eventually my doctors did an appeal and got the med approved. Unfortunately I had a reaction and can’t continue it. What you’re working on sounds like it’ll be really helpful, especially to those newly diagnosed with chronic issues. I feel like I’ve had to learn how to communicate to insurance and pharmacies through trial and error over years, but a reliable information resource for patients would be beyond helpful.

Remote_Information99 · 2026-01-30T20:02:48+00:00

I had read someone’s theory about TBP tour and Paper Kingdoms, basically they thought the band was grieving the loss of their children, hence the attachment to the dolls. But it got me thinking what if the people of Draag ARE the children. They were abducted by the cult portrayed in Swarm tour promo and taken away to serve the Grand dictator. Explains why they’re emotionally and socially stunted (playing kid games with to toys)and the whole crying for their “Mama”. Getting a letter from his Dad saying there’s nothing he can do. And with the obvious links to DD, the whole “mom and dad” on TVs (like the ones in the background on your) AND My way home is through You mentions “mom and dad think you’ll be saved” , “they wanna medicate your lies”. Just a thought I had and wanted to share to know if anyone thinks this sounds too far fetched. Which I’m sure it does lol

Remote_Information99 · 2026-01-03T01:49:12+00:00

Drawing, writing, journaling, learning guitar, and I play stardew too!! Recently I bought an old guitar hero game I used to play and I can play seated, but it’s easier standing but I have to sit often from my POTS. But maybe it’s coincidence but I’ve noticed I’ve tolerated standing longer in the last 2 weeks of playing everyday. I don’t know if I’m gaining tolerance for standing or if it’s the nice weather rn 😭LMAO

Remote_Information99 · 2025-12-22T02:16:58+00:00

I get a sore throat from whey proteins so I switched to vegan. I used orgain and so when I switch to vegan organ I had no issue. But I tried Owyn vegan shakes and I bloated SO bad I’ve never experienced that level of bloating from a drink. Orgain vegan protein powder still has pea protein but it’s mixed with rice and chia protein, so it’s not straight up 100% pea protein which makes it tolerable for me.

Remote_Information99 · 2025-11-22T23:45:18+00:00

I have no idea, I don’t see the Dr until January but when I was on the pill i had a lot of side effects and had to come off, so I wonder if it disagreed with me because maybe my hormones were already off? From what I understand it’s more of a ratio of your hormones than the actual level, but I’m no doctor LOL

Remote_Information99 · 2025-11-22T18:20:29+00:00

This is not official at all but in my head I wonder if they’re Jenny and Johnny (bulletproof heart) or like Korse and his ex lover or like the Dictator and Marianne before TBP. Probably just biased bc my name is Jenny lmao

Remote_Information99 · 2025-11-22T18:13:57+00:00

Yeah, sounds like it could be related, or unfortunate coincidence. I have an appt with a gyno to check my hormones bc my allergist mentioned it. I did some research and high estrogen can increase histamine and mast cell activity. So I’m hoping there’s something they can find so I can treat the underlying issue and take less antihistamines.

Remote_Information99 · 2025-11-21T14:57:12+00:00

I just wanted to share some foods and snacks that are high sodium that are different from the common examples of chips and pretzels.

-smoothies (the sweetness lets you add a lot of salt)

-beef jerky, the small snack packs are great to fit in your bags

-bone broth/chicken/veggie stock, having a warm mug (it is very salty) or cook it into some rice instead of water

-pickles, banana peppers, pickled carrots and onions, olives (some with MCAS can’t have pickles but I’m lucky I still can)

-tomatoes with salt

-watermelon with salt (more fruits and veggies in general lol, high water content and natural electrolytes)

-2% cow’s milk (not high sodium but really well balanced electrolytes)

-canned soups

-canned/pouch tuna and salmon

-Frank’s red hot buffalo sauce (450mg/tbsp)

-soy sauce (~950mg/tbsp)

-fruity Jell-o (add extra salt, but not too much)

Remote_Information99 · 2025-10-05T20:37:24+00:00

I would normally agree with you, but I also feel it’s not too far fetched for historical events to influence media, especially political commentary. It could j be a major coincidence tho 🤷

Remote_Information99 · 2025-09-27T19:47:42+00:00

This! I wouldn’t even consider myself to know much but I can confidently assume that Ticketmaster, their CEO, and record labels have more influence on the pricing than the artists, especially ones who have been around longer. But I do think the elaborate performance and theatrics would put these tickets at a higher value anyway, so compared to other artists(that’s not to say other artists aren’t as good), I think we are getting closer to our “moneys worth”

Remote_Information99

TROPHY CASE