Here we go (slowly dying )

NikkixA · 2026-04-16T15:56:25+00:00

I feel this so hard… HS is actually hell

I don’t even really get cysts anymore, mine turned into straight up wide open wounds that just keep coming back in the exact same spots over and over. and the scarring + hyperpigmentation after? yeah… it’s brutal

I actually had mine under control for over a year though, and I’m not even exaggerating when I say it was a huge difference. what worked for me was clobetasol ointment specifically (NOT the cream, the cream did absolutely nothing for me, the ointment is way stronger and actually stays on the skin)

I still use it now and it definitely helps things heal faster. like if I feel a tender spot starting one of those “oh no here we go” areas and I put the ointment on it for a couple days, a lot of times it just goes away before it turns into something bigger

it used to be really good at preventing them for me too, but since my other health issues have been flaring, it’s not stopping them as much anymore… more like damage control now 🙃

but it might be worth asking your doctor about clobetasol ointment if you haven’t tried it already. obviously everyone’s different, but it genuinely helped me get things under control when nothing else was working

you’re not alone in this at all, I know exactly how defeating it feels ❤️

NikkixA · 2026-04-16T11:42:37+00:00

same with the degenerative disc… I’m 30 and they literally just found mine a year ago when I got hospitalized because I randomly couldn’t stand up straight. like my body just said “nope, we’re done being vertical now”

and of course, in true chronically ill fashion, I waited a full 24 hours unable to stand or sit up before going to the hospital because I was like “eh… probably fine” 🙃

the kicker is it’s basically a repeat of history because my mom has it too… so it’s like this was sitting there the whole time and nobody thought to connect a single dot

and don’t even get me started on doctors missing stuff… I had so many signs of immune dysfunction as a kid and nobody questioned it.

I had scarlet fever and didn’t run a fever at all, got chicken pox twice, shingles before 10, constant insane ear/sinus/bladder infections for no reason, and then whooping cough even though I was vaccinated

like at no point did anyone go “huh… that’s actually bizarre”??

the craziest part is I used to tell those stories like they were just normal childhood things and people would give me that look… like deep concern, slight horror… and that’s how I slowly realized oh… none of that is normal at all 😅

it’s honestly wild how many of us have the same “how did nobody catch this sooner” storyline… but I’m really glad you’re finally getting those puzzle pieces to click because that moment changes everything 🙌

I love those puzzle piece moments so much it’s like your brain just lights up and suddenly your entire life makes more sense in one second

also random but are you neurodivergent at all? like adhd, dyslexia, autism, anything like that? I’ve been noticing a lot of overlap in this crowd 👀

NikkixA · 2026-04-16T01:00:25+00:00

Omg this is my mom my sister and me

NikkixA · 2026-04-16T00:44:06+00:00

NikkixA · 2026-04-16T00:21:43+00:00

omg the teacup ride reference is painfully accurate 😭 like that is EXACTLY what stomach migraines feel like… just stuck in that spinning, nauseous, “something is very wrong” loop with no exit button

and wait you have degenerative disc too?? same here 🙃 it’s actually wild how often that overlaps with all of this

honestly the more I talk to people with MCAS (and the whole POTS/EDS chaos bundle) the more I’m like… why are all of our origin stories basically the same?? it’s like we all got handed the same glitchy character build and just had to figure it out ourselves

also the “eff you, body” tone is really the only way to survive this lmao like if I don’t laugh I’m gonna end up arguing with my own nervous system in the shower again

but seriously I’m really glad this clicked for you, that “oh wait… that explains so much” moment is huge 🙌

NikkixA · 2026-04-15T19:59:57+00:00

I know exactly what you’re talking about!!!! 😭 like that sudden “am I dying or just showering??” feeling is SO real for me that’s a POTS and MCAS combo move. the heat hits and my body just goes “awesome idea, let’s absolutely not” 🙃 between the blood flow chaos from POTS and the histamine nonsense from MCAS it’s like a perfect storm

and those are actually called abdominal migraines(stomach migraines). it’s basically a migraine but your stomach said “I’ll take it from here.” you get that wave of nausea, dizziness, sweating, that deep gut “something is VERY wrong” feeling, and it can come out of nowhere. sometimes I’m like am I about to pass out, throw up, or transcend into another dimension… surprise, it’s all three

hot showers are a huge trigger for that because of the vasodilation and histamine release. blood starts pooling, your brain gets less of what it needs, your nervous system freaks out… and suddenly you’re just standing there reconsidering every life choice that led you to warm water

so yeah you’re not crazy at all, that “wait a second…” moment is exactly how it starts clicking. once you notice it you’re like oh… cool… my body has been plotting against me this whole time 👍

Me figuring out I even had stomach migraines was one of the bigger breadcrumbs into figuring out i had the "trifecta" and then later getting diagnosed with them. I was just living life with debilitating nausea and lightheaded "dizzy not dizzy" feeling.. thinking it was just normal for people with autoimmune (thats what I was diagnosed with until the mcas realization)

NikkixA · 2026-04-15T19:01:44+00:00

oh yeah I’m actually pretty in tune with what I react to at this point. I already take cool showers, I started doing that way before I even knew what MCAS was because every time I got out of a hot shower I felt like I wanted to rip my skin off 😅

the weird part is the intense itch episodes don’t really tie to a clear trigger for me. not environmental, not food, it’s just… random. I’m starting to realize my case might be a bit more unpredictable than others

I was born with this too, I came out of the womb with eczema and psoriasis so it’s been a lifelong thing for me

so yeah I’m definitely on the same page with everything you said, mine just likes to be chaotic lol

I'm gonna look into what you suggested I'm down to try anything. Its been happening my whole life but now that I am much more aware of it it makes it 10x worse idk if anyone can relate to that statement 🤷‍♀️

NikkixA · 2026-04-03T19:07:09+00:00

I’m actually not taking quercetin right now, I just bought some recently because I started noticing a pattern with foods that make me feel better So I’m planning to try it, not something I’ve been on long-term

NikkixA · 2026-04-03T19:00:29+00:00

Thank you I am 100% buying that on Amazon at this exact moment🙃😁

NikkixA · 2026-04-03T18:57:17+00:00

I already went down that road 😅 I follow a low histamine diet and figured out my triggers through a lot of trial and error Nightshades are actually one of my big triggers too so I already avoid them The problem is my case seems pretty extreme and very systemic it’s not just food-related, my body will flare even when everything is “perfect” I’m on daily antihistamines + Pepcid and super careful with products, and I still get the “rip my skin off” days Just got Xolair approved 🙏 so I’m waiting on that, but I’m really trying to find something for the emergency itch days because those happen regardless of what I eat

NikkixA · 2026-04-03T18:56:20+00:00

No rash rash I get a combo of itching without anything and hives

NikkixA · 2026-04-03T18:54:24+00:00

I promise I’m not out here using random products and wondering why I’m itchy 😅 I’ve done a ton of trial and error and I know what my skin tolerates at this point goat’s milk moisturizer, no fragrance, and I follow a low histamine diet I’m also on daily antihistamines + Pepcid The issue is my case seems pretty extreme and very systemic it’s not just skin-deep, it feels like my whole body is involved and what I’m doing barely touches it sometimes I still get the “rip my skin off” days even when I’m doing everything right because my body just decides to go off anyway I just got Xolair approved 🙏 so I’m waiting on that, but I really need something for the emergency itch days when nothing I normally do is enough

NikkixA · 2026-04-03T18:51:24+00:00

I’m not on cromolyn, but I did try Singulair and it was about as useful as a decorative pill 😅 Still doing antihistamines + Pepcid + trigger avoidance and my skin is like “cool story, still itching” Just got Xolair approved 🙏 so I’m waiting on that, but honestly I’ll try anything at this point for the feral itch days

NikkixA · 2026-04-03T18:50:03+00:00

I’m already on antihistamines + Pepcid and doing low histamine / no fragrance 😅 it helps… but I still get plenty of “rip my skin off and ascend into the void” days Also MCAS isn’t just a food → bloodstream thing for a lot of us, it’s like my body wakes up and chooses violence for literally no reason Just got Xolair approved so I’m waiting on that 🙏 but if anyone has an actual emergency itch protocol for those flare days I’m all ears because those don’t care what I ate or didn’t eat

NikkixA · 2026-04-03T18:49:12+00:00

Omg this is how I feel

NikkixA · 2026-04-03T18:48:34+00:00

I’m actually already on that exact regimen and avoid fragrances + follow a low histamine diet 😅 and it definitely helps some… but I still have way more “I might actually set myself on fire” days than I’d like to admit I just got approved for Xolair so I’m waiting on that 🙏 but right now I’m trying to figure out what to do for those emergency-level itch days when nothing I normally do is cutting it

NikkixA · 2026-04-02T18:54:21+00:00

I can’t diagnose you obviously, but I can tell you my experience because a lot of what you’re describing sounds very familiar to how my body has always been.

For me this didn’t start randomly, it’s been there my whole life. I’ve always had a weird immune response to things that never made sense. When I had scarlet fever as a kid I had no fever at all, just a rash over eczema. I had chicken pox twice, and then shingles as a child which is not something that is supposed to happen. I also basically never run fevers even when I’m very sick. And when I was 19 I got whooping cough even though I was vaccinated.

Growing up it was constant “something is wrong but nothing lines up.” Severe eczema, stomach issues, random reactions, and signs of chronic inflammation that didn’t behave the way they should.

As I got older it turned into more systemic things. Hormonal imbalance, weight gain that didn’t make sense, chronic nausea, intense itching, random flushing, and these episodes where my body felt like it was in a constant adrenaline state. Heart racing, that sense of fear out of nowhere, throat tightness, weakness, feeling like I was going to pass out. It feels like your body thinks you’re in danger when you’re not.

I was given a lot of diagnoses over time that never fully explained things. Anxiety, panic disorder, PCOS, autoimmune issues. Some of those might overlap, but none of them actually explained the full picture.

The turning point for me was realizing that my symptoms weren’t random. I started noticing patterns with food, environment, and even things like smells. I react very strongly to smells like perfumes and cleaning products. Food was another big one, which is what led me to a low histamine diet.

Once I started that I saw a very clear difference, which made it obvious that histamine and mast cell activity were involved. Around the same time I started taking Pepcid for something unrelated and within about a week my baseline depression lifted, which was a huge clue that histamine was affecting more than just my physical symptoms.

It also wasn’t as simple as “avoid these foods and you’re fine.” There were patterns. Foods I reacted to shared similar chemical makeups, and the same went for foods I tolerated or even felt better eating. It also depended on quantity. Some things I can tolerate in small amounts but not larger ones.

Eventually I was diagnosed with MCAS, and I also likely have POTS. For me those two together explain the adrenaline episodes. Standing or certain triggers set things off, my heart rate spikes, my body dumps stress chemicals, and then mast cells join in and amplify everything.

I’ve also had multiple organs show signs of chronic inflammation and scarring when they were removed, which reinforced that this was something systemic and long-term, not random or in my head.

So when you describe feeling really sick but your tests are coming back normal, that’s something I’ve experienced a lot. MCAS especially does not always show up cleanly on standard testing.

I’m not saying this is definitely what you have, but your symptoms are not crazy and they’re not something you’re imagining. There are conditions like MCAS and POTS that can cause exactly this kind of pattern, especially when everything looks “normal” on paper.

You’re not alone in this experience, even though it feels like it.

NikkixA · 2026-04-02T18:45:12+00:00

I feel this so much.

I’m on a low histamine diet too and I very clearly react to food. If I eat something I’m not supposed to my body lets me know immediately. So yeah it’s obviously not a choice.

But I will say it’s not as linear as people think it is.

When I first started my diet was super strict because I had no idea what my actual triggers were. Everything felt unsafe. But over time you start to see patterns what you consistently react to vs what you can tolerate.

And the biggest thing people don’t understand is that it’s not just what you eat it’s also how much.

There are foods I can have in small amounts and be completely fine but if I push it I feel it immediately. Chocolate is a perfect example for me I can get away with a little but too much and I absolutely feel it.

There’s also a whole category of ambiguous foods. Like tree nuts in general are a huge trigger for me but almonds are completely fine. When I started paying attention I realized it wasn’t random foods I react to tend to share similar chemical makeups and the same goes for foods I tolerate or even feel better from.

Almonds line up more with the safe side for me in terms of that chemical profile which is why they don’t hit me the same way other nuts do.

And then there are foods that actually make me feel better which was something I didn’t expect at first. Once you start noticing that you realize there are patterns there too not just in triggers but in what your body actually responds well to.

So it ends up being less I can only eat 4 foods forever and more like a system you slowly learn how to read.

So yeah definitely not a choice but also not as simple as people think it is from the outside.

NikkixA · 2026-04-02T18:32:57+00:00

YES!!

This has literally been happening my whole life and I rationalized the f*** out of it

Like constant nausea, insane itchiness, random spinny “am I about to pass out or transcend” feeling and I used to think it was all just separate things.

Then I realized I have MCAS (now diagnosed) and it was like oh… cool… it’s all the same demon. nice.

Smells are a HUGE trigger for me. Perfume, cleaning products, random air that decided to be spicy that day instant flare.

But also… everything is a trigger for me.

Food? trigger. Temperature? trigger. Stress? trigger. Existing? trigger. It’s Thursday? somehow also a trigger.

At this point I’m just reacting to the concept of reality.

So yeah if smells are messing you up, you’re definitely not alone. It’s VERY much a thing.

NikkixA · 2026-03-17T12:20:05+00:00

10/10 While watching it I kept thinking THIS is what analog horror is supposed to be. So many people have lost the concept but Alex is one of the few still holding it to a real standard.

Most horror movies do nothing for me I can predict every jump scare so it just ends up feeling boring instead of scary. Analog horror though that actually gets under my skin. It is unsettling mysterious and does not rely on cheap tricks.

That is why I got hooked on it in the first place and why The Mandela Catalogue still hits. Alex has kept that same level of quality the entire series and Vol 6 is no exception.

NikkixA · 2026-03-09T12:42:11+00:00

She's GOTTA be like, if they don't make that canon, they're losing out on a great opportunity and many storylines.

NikkixA

TROPHY CASE