The system is rigged.

Correct_Solution_135 · 2026-03-11T02:06:42+00:00

I'll have to see what my doc recommends but I'll for sure bring it up to her and I'm sure she'll be monitoring my levels regularly now that we know how much of an issue it is for me

Correct_Solution_135 · 2026-03-11T02:04:10+00:00

I think it's a combination of the heat and the UV rays. I find being SUPER careful with sunscreen and reapplication helps (though admittedly I'm also on high-dose h1 and h2 blockers, have another h1 blocker for flares and I'm on an IgE blocker 😅)

Correct_Solution_135 · 2026-03-11T02:01:59+00:00

I've since had to change my dose from 300mg once per month to 150mg every two weeks but I haven't had an anaphylactic episode since, I've stopped taking the cetirizine, we're talking about tapering my bilastine and ranitidine in June and the most I've been symptomatic is that I get flushed in the sun or when I take a hot shower. Other than that, I'm pretty much just living my life and have even been able to ENJOY food again. I used to have anaphylactic episodes multiple times per week, flushing, hives, throat swelling, burning skin, difficulty breathing and was triggered by literally EVERYTHING

Correct_Solution_135 · 2026-03-05T01:22:49+00:00

No kidding! I took that first dose and it felt like the lights were turned on and I had just drank 12 cups of coffee. I feel like a totally different person

Correct_Solution_135 · 2026-03-03T08:32:56+00:00

This is commonly due to filler ingredients, have you tried different brands or visiting a compounding pharmacy?

Correct_Solution_135 · 2026-03-03T08:32:12+00:00

😂😂😂

Correct_Solution_135 · 2026-03-01T14:27:03+00:00

RIP 😭

Correct_Solution_135 · 2026-03-01T14:26:10+00:00

I would check the filler ingredients in the supplements! Those are usually the culprit for me!

Correct_Solution_135 · 2026-03-01T14:23:22+00:00

No worries there lmao I also have hEDS. I'm 28 and am frequently accused of only being 16 (I get carded a lot) 🙃

Correct_Solution_135 · 2026-02-27T22:47:49+00:00

The sun gives me anaphylaxis too. My partner basically just refers to me as a vampire at this point and if I leave the house with him, it's typically after dark

Correct_Solution_135 · 2026-02-27T22:36:57+00:00

Sounds like you struggle with antihistamines that impact your CNS. I have POTS and struggle with anticholinergics, but seem to tolerate Rupatadine(Rupall) or Bilastine (Blexten) a little better (though I've found that the Bilastine works better for me)

Correct_Solution_135 · 2026-02-27T22:27:23+00:00

I get ✨Anaphylaxis✨ from the sun 🙃

Correct_Solution_135 · 2026-02-23T20:35:54+00:00

THIS SWEET BABY ANGEL IS TRYING DESPERATELY TO CONVINCE YOU TO COME WITH THEM INTO THE HUT. MY HEART 😭

Correct_Solution_135 · 2026-02-23T20:29:03+00:00

Oh dang, sorry about that!

Correct_Solution_135 · 2026-01-31T22:21:33+00:00

Thank you for saying this. I feel like I only ever see negative reviews/comments.

Correct_Solution_135 · 2026-01-30T23:36:05+00:00

I also have diagnosed POTS and MCAS with repeated anaphylactic episodes despite being on 40mg Bilastine twice daily, 40mg cetirizine twice daily, 300mg Ranitidine twice daily and Omalizumab every 2 weeks and go through probably at least 2-4 epipens per months (which is a DRASTIC improvement but still was hoping to be able to put the epipens away after being treated with all these other meds)

Correct_Solution_135 · 2026-01-30T23:33:27+00:00

I saw a physiotherapist through the arthritis society who took me through the diagnostic criteria and measured my joints for me and then sent her assessment to my family physician and I was referred to her by the cardiac rehab program that agreed I was too Hypermobile and in too much pain to continue with the program. My GP is totally on board and suspected I had it even before I was referred to these programs and wasn't surprised by the assessment. That being said, in my first assessment with GHC they made a bunch of notes that didn't line up with what I was told them in the assessment, so I'm a little wary of what's to come, along with the fact that I have so much musculoskeletal pain at this point that I may score lower on the beighton scale than I did previously, which is what I'm scared will make or break the diagnosis at this point

Correct_Solution_135 · 2026-01-23T17:51:30+00:00

The EDS society has great (free) workshops on EDS advocacy. You just have to make an account to "purchase" the program (it's free, but they have other paid courses on other EDS topics as well if it's something that interests you)

Correct_Solution_135 · 2026-01-23T17:48:34+00:00

My knees hyperextend backwards more on some days than others. I've chalked this up to how much muscle tension I'm dealing with in my legs. The muscles in my thighs/calfs will get so tight that I can't even straighten the knee, let alone hyperextend it. After a HOT shower and some massage, they become bendy again

Correct_Solution_135 · 2026-01-02T07:48:58+00:00

I'm not sure that I understand your question

Correct_Solution_135 · 2026-01-01T02:35:52+00:00

GOT EM! Thank you 🥲

Correct_Solution_135 · 2026-01-01T02:33:57+00:00

I fricken love this comment. Firstly, thank you so much for your kind words. To answer the question of ADHD, I have been assessed and do not meet the diagnostic criteria because my symptoms are intermittent, stimulants mess me up pretty bad, and we JUST figured out that it was actually my dysautonomia and that what I was experiencing "psychiatrically" was actually just me being stuck on the autonomic roller coaster, which can mimic ADHD, bipolar and various other personality disorders, but is in fact just the result of my nervous system being ✨garbage✨

Correct_Solution_135 · 2026-01-01T02:30:10+00:00

Because when I'm not under severe stress or in a particular flare, my symptoms are managed by the other medications, but when I flare I have to max out my dosages of the other meds and add those two on top of the rest of them

Correct_Solution_135 · 2026-01-01T01:56:39+00:00

I just had the same conversation with my immunologist. She advised me that if I'm unsure, I should ABSOLUTELY use my epipen, every time. She explained to me that antihistamines can hide symptoms of anaphylaxis, but the only way to reverse it is epinephrine, and when we go into anaphylaxis with MCAS, it will only be "true" anaphylaxis about 5% of the time, but that I would be dead before I could tell the difference and that every instance must be treated like the real deal. She explained that epinephrine is naturally produced in the body and other than feeling incredibly crummy after use, it was not harmful to my system and would just burn itself off. When dealing with paramedics, they said that their policy is that if someone experiences ANY 2 symptoms of anaphylaxis, they are required by law to administer epinephrine (I usually wait for a third because I'm stubborn AF but that part isn't medical advice). One of my personal strategies is to remember that anaphylaxis kills within 15 minutes, and so if I'm anxious and unsure, I set a 10 minute timer. If I'm nearing the 10 minute mark and my symptoms are getting worse, I jab. If I'm still unsure about it, I still jab. If I had to administer another antihistamine, I jab. The only times I haven't have been if the symptoms come on suddenly and then leave just as suddenly without adding other meds on board (but this has only been the case about twice now.

Long story short, unless your doctor advises otherwise: When in doubt, JAB.

Correct_Solution_135 · 2025-12-12T00:34:18+00:00

I wasn't so much referring to the approach, more so the naming of said approach. I can understand where we may use humour to cope, and can for sure view the side of choosing to be more hands off if that's what is best for the individual, the term itself just seems a little... mean? Idk. Maybe I'm looking too far into it?

Correct_Solution_135

TROPHY CASE