u/1616ally1616

Posted here before and spoke about my experience with repeated anaphylaxis and my small victory in finding a doctor that believes me.
I work at a supermarket next to my studies in the Netherlands and had to call off multiple times since I have anaphylaxis quite often. I still bet on MCAS but most doctors follow consensus 1 which is stricter than consensus 2 so I probably won’t get diagnosed.
Monday night I had my 13th anaphylaxis which required an EpiPen and another injection of almost double the dose an EpiPen has. I was in hospital until 4am and still went to work the next day from 15-18h - a fairly short shift, yes, but probably too long for the circumstances. What made it worse is that during that shift I found out I almost lost my job due to me having to call in sick so many times. What luckily saved me are my other manager‘s appreciation of me doing my job well and sometimes staying longer or hopping in when they’re short staffed plus customers being really happy with me.
I am 22 years old, in my last year of studies beginning with my thesis in September.

What if things don’t get better. If I don’t have a POTS flare it’s fibromyalgia or anaphylaxis or asthma or a fucking migraine… I just can’t win it seems and I’m genuinely scared for my future. I’m ambitious and good at what I’m doing but I’m afraid my health will stay in my way…

Anywho I saw I can get cromolyn sodium in Germany without a prescription but that stuff is hella expensive, but I’ll give it a shot next to quercetine which honestly did quite work wonders for me

Posted here before and spoke about my experience with repeated anaphylaxis and my small victory in finding a doctor that believes me.
I work at a supermarket next to my studies in the Netherlands and had to call off multiple times since I have anaphylaxis quite often. I still bet on MCAS but most doctors follow consensus 1 which is stricter than consensus 2 so I probably won’t get diagnosed.
Monday night I had my 13th anaphylaxis which required an EpiPen and another injection of almost double the dose an EpiPen has. I was in hospital until 4am and still went to work the next day from 15-18h - a fairly short shift, yes, but probably too long for the circumstances. What made it worse is that during that shift I found out I almost lost my job due to me having to call in sick so many times. What luckily saved me are my other manager‘s appreciation of me doing my job well and sometimes staying longer or hopping in when they’re short staffed plus customers being really happy with me.
I am 22 years old, in my last year of studies beginning with my thesis in September.

What if things don’t get better. If I don’t have a POTS flare it’s fibromyalgia or anaphylaxis or asthma or a fucking migraine… I just can’t win it seems and I’m genuinely scared for my future. I’m ambitious and good at what I’m doing but I’m afraid my health will stay in my way…

**For everyone losing hope, struggling or also in the middle of nowhere (how I like to say)…**

**…There is hope.**

Patience is the biggest factor and I must say I’ve lost it multiple times.
I’m chronically ill, started with an asthma diagnosis as a child, followed by POTS in 2020 and then PCOS, hypermobility, ADHD and fibromyalgia in 2026
… and 12x anaphylaxis within 24.05. - 31.07.2026 (hopefully no more to come) where a huge amount of hope was lost
…working towards an MCAS, EDS and also cPTSD diagnosis
…and also having to navigate studies, work and a personal life as a 22-year old young woman

***Keep. Fighting.*** I know the healthcare system lets us down a lot and indeed it takes a lot of time, hope, energy, patience and luck to find the right doctor. But keep fighting. I hope I can maybe bring that hope to people in my situation by telling what happened in my appointment today

After 12 reactions, almost not breathing anymore and having my life almost deleted, doctors dismissing me or not listening, I finally, FINALLY got things moving. I literally cried.
FIY I’m in the Netherlands and I saw an allergist today, told him how my reaction start and evolve, that quercetine and a low histamine diet seemed to help, 4x Levoceterizine isn’t sufficient, family history, my bad experience with Dutch doctors and me just wanting SOMETHING to work with.
I told him that I do agree with a doctor that I probably have chronic spontaneous and induced urticaria, but it wouldn’t explain me having to use epinephrine because I’m literally suffocating, and that it can’t be asthma since I’ve tried using my sprays before using my EpiPen. So I said, listen I know that most doctors have to follow the consensus 1 guideline and that I need elevated tryptase (which I don’t have) but I still thought it could be MCAS.
Do you guys know what he said…? **That does fit the picture.** *Do you know what an incredible feeling this is? Being listened to?!*
So what did he do? Not only did he order a baseline tryptase, he also ordered that if I have a reaction I get blood drawn before anyone else, an ALEX2 which tests for 300 allergens, thyroid test and a lung test. Why? So we can rule out everything and hopefully get me Xolair. 🥹 It gets better though. Maybe somebody remembers my post where the internist said that low histamine diet is bs and histamine intolerance doesn’t exist? Yeah. HE SAID IT CAN WORK. The issue is just **that it’s hard to prove it works since people with MCAS have individual triggers**. That’s not everything. I asked about his opinion of consensus 2 2026 after 6 years (states elevated tryptase not necessary and consensus 1 only in use to prevent overdiagnosing, mind you people are UNDERdiagnosed which is proven)
His answer: Well we have to follow consensus one so that’s why I ordered tryptase but I’ve sent people with low tryptase to Erasmus MC in Rotterdam for the same matter as the picture fits. Guess what, they’ve been rejected because they want to prevent hospitals from being overcrowded. He also agreed with me that the doctor who said angioedema also reacts well to epi was WRONG.
Oh and I said that people who, according to consensus1, have been overdiagnosed actually received treatment that helped them incrementally which they wouldn’t have gotten if the doctor wasn’t following consensus2. He did say that we obviously need all these tests to find out *what medication I do need in the end*. And tbh?! I love that even more. Instead of just giving Xolair or just any other meds, testing, looking at the medical history etc and basing the meds on the actual needs…

**Everything I’ve been saying this whole time, all the research… I was RIGHT. I was not insane!!!**

I don’t expect to be diagnosed with MCAS but it’s just so…relieving to be finally listened to well, taken seriously and understood after being literally gaslit. He even said I can do a low histamine diet with their dietician but it’s a rough diet (I’ve done it before. Worst time of my life).
My goal for now is to get these tests done and find the most effective and suitable treatment. I have faith in my appointment for EDS in October and hope they can help me further with the MCAS diagnosis as well.

For everyone losing hope, struggling or also in the middle of nowhere (how I like to say)…

…There is hope.

Patience is the biggest factor and I must say I’ve lost it multiple times.
I’m chronically ill, started with an asthma diagnosis as a child, followed by POTS in 2020 and then PCOS, hypermobility, ADHD and fibromyalgia in 2026
… and 12x anaphylaxis within 24.05. - 31.07.2026 (hopefully no more to come) where a huge amount of hope was lost
…working towards an MCAS, EDS and also cPTSD diagnosis
…and also having to navigate studies, work and a personal life as a 22-year old young woman

Keep. Fighting. I know the healthcare system lets us down a lot and indeed it takes a lot of time, hope, energy, patience and luck to find the right doctor. But keep fighting. I hope I can maybe bring that hope to people in my situation by telling what happened in my appointment today

After 12 reactions, almost not breathing anymore and having my life almost deleted, doctors dismissing me or not listening, I finally, FINALLY got things moving. I literally cried.
FIY I’m in the Netherlands and I saw an allergist today, told him how my reaction start and evolve, that quercetine and a low histamine diet seemed to help, 4x Levoceterizine isn’t sufficient, family history, my bad experience with Dutch doctors and me just wanting SOMETHING to work with.
I told him that I do agree with a doctor that I probably have chronic spontaneous and induced urticaria, but it wouldn’t explain me having to use epinephrine because I’m literally suffocating, and that it can’t be asthma since I’ve tried using my sprays before using my EpiPen. So I said, listen I know that most doctors have to follow the consensus 1 guideline and that I need elevated tryptase (which I don’t have) but I still thought it could be MCAS.
Do you guys know what he said…? That does fit the picture. Do you know what an incredible feeling this is? Being listened to?!
So what did he do? Not only did he order a baseline tryptase, he also ordered that if I have a reaction I get blood drawn before anyone else, an ALEX2 which tests for 300 allergens, thyroid test and a lung test. Why? So we can rule out everything and hopefully get me Xolair. 🥹 It gets better though. Maybe somebody remembers my post where the internist said that low histamine diet is bs and histamine intolerance doesn’t exist? Yeah. HE SAID IT CAN WORK. The issue is just that it’s hard to prove it works since people with MCAS have individual triggers. That’s not everything. I asked about his opinion of consensus 2 2026 after 6 years (states elevated tryptase not necessary and consensus 1 only in use to prevent overdiagnosing, mind you people are UNDERdiagnosed which is proven)
His answer: Well we have to follow consensus one so that’s why I ordered tryptase but I’ve sent people with low tryptase to Erasmus MC in Rotterdam for the same matter as the picture fits. Guess what, they’ve been rejected because they want to prevent hospitals from being overcrowded. He also agreed with me that the doctor who said angioedema also reacts well to epi was WRONG.
Oh and I said that people who, according to consensus1, have been overdiagnosed actually received treatment that helped them incrementally which they wouldn’t have gotten if the doctor wasn’t following consensus2. He did say that we obviously need all these tests to find out what medication I do need in the end. And tbh?! I love that even more. Instead of just giving Xolair or just any other meds, testing, looking at the medical history etc and basing the meds on the actual needs…

Everything I’ve been saying this whole time, all the research… I was RIGHT. I was not insane!!!

I don’t expect to be diagnosed with MCAS but it’s just so…relieving to be finally listened to well, taken seriously and understood after being literally gaslit. He even said I can do a low histamine diet with their dietician but it’s a rough diet (I’ve done it before. Worst time of my life).
My goal for now is to get these tests done and find the most effective and suitable treatment. I have faith in my appointment for EDS in October and hope they can help me further with the MCAS diagnosis as well.

Ive posted on here before maybe some remember me. I have a history of chronic illnesses

ADHD
POTS
PCOS
Fibromyalgia
Hypermobility
CPTSD

Suspected EDS and Chronic spontaneous/ induced urticaria (and personally, I still have a feeling, MCAS!)

Doctors said it can’t be MCAS. Studies say that apparently histamine high or liberating foods don’t even have an impact on MCAS or pseudoallergies (then why tf do so many people react?). Apparently the POTS/EDS/MCAS trifecta also doesn’t exist, citation doctor: I have people like you sitting infront of me at least for times a day thinking they have MCAS, when the trifecta is proven to not exist. (And then blamed it on social media).I’m not taken serious (ofc what else, I’m in the Netherlands nevertheless). My tryptase is 2.5 and was taken a bit more than 2h after my worst shock (great job, the peak is around 30-120min after the shock). I’ve been on Ceterizine while that shock so idk if that impacts tryptase, nevertheless you can still have high shock related mediators besides tryptase. I know I react to the cold, warm to cold, exercise/ sweat, stress and APPARENTLY STILL TO HIGH HISTAMINE FOODS. I’m going insane, I just had my 12th anaphylaxis after having breakfast (I had toast, egg, milk, cinnamon, cumin, Italian herb mix, bacon). Just ate a bit and immediately felt my stomach bloating with diarrhea following shortly after. Simultaneously I started to flush, itch everywhere, stridor begun, elevated heartrate and that typical feeling of doom I always have. I waited and recorded because according to the doctors „it’s not anaphylaxis and just a lil swelling in the throat“. So yeah I reached the point where eventually no air was entering my body no more and used the EpiPen which thank god was effective. Not too long ago I had anaphylaxis 30min ish after waking up and needed two EpiPens as the first was ineffective. Mind you, stable temperature, just took my usual meds with water and no food. It’s so frustrating because I just randomly react! Another time during my third shock my BP sunk to 80-45, with all symptoms named above just additionally I was unconscious and had foam leaving my mouth.
My short term memory has been seriously since then. Leave alone my mental health. The only thing they gave me was the UAS7. I completed a week with 2x 5mg Levoceterizine then went up to 4, 3 and now I’m supposed to just take 2 but it’s NOT manageable so I increased to 3. I suppose 4 pills is necessary as I still experience urticaria. Doing this so I can get Xolair.

Chronology of reactions, each of them lead to dyspnoe and included flushing, itching, heart racing and feeling of doom; some also included GI and cardiovascular involvement

24.05.2026 – EpiPen, effective
26.05.2026 – 4 separate shocks (11h, 14:30, 15h, 18:45) (2x EpiPen, 2x 5mg Epinephrine from hospital)
27.05.2026 – morning, EpiPen
6.06.2026 – ~20:45, tavegyl ineffective, Epipen
28.06.2026 – ~18h Epipen
2.07.2026 – ~13:45 Epipen
12.07.2026 – ~11h, first EpiPen ineffective, second effective
14.07.2026 - Epipen
22.07.2026 – ~1.5h into work, throat tightness + rash (NO EpiPen, episode ended by itself)
31.07.2026 - Epipen

Got an upcoming appointment with the allergist 10.08.
Just now I’ve gotten better mentally and now I just feel ruined. I even tried a low histamine diet, worked okay, had some fewer symptoms but the emotional toll the restriction gave me was immense and I do not want to go this way again. I’m sick and tired of the fact that I had 13 shots of adrenaline within two months. And yes this should be my last concern but I have a tattoo appointment AND I REALLY WANT IT BC IVE BEEN LOOKING FORWARD TO IT SO MUCH

Hello everyone,

I’m F22, complex childhood trauma has always made life hard. I’m finally starting therapy soon, and I’ve gotten better at understanding and regulating myself over the years. But life keeps knocking me down right after I get up.

My mom and brother are chronically ill and still live with my toxic father. Not my job to fix that, and I’ve got some distance now, but I still worry.

Health-wise, I feel like I’m slowly unaliving. Fibromyalgia, PCOS, POTS, hypermobility, asthma, and anaphylaxis not once, but 11 times in 7 weeks. First shock was 24.12.2024, barely made it. Since then, nightmares of it happening again. On 24.05.2026, I went into shock from something I wasn’t even exposed to known triggers. Used my EpiPen 8 times, 3 ER shots, two shocks severe (unconscious for one). Last shock a week ago.

I’m on a low histamine diet helps, but kills most of my favorite foods, hard after recovering from an atypical eating disorder. Lots of bed rest needed for chronic pain, can’t take NSAIDs (would trigger anaphylaxis, don’t help anyway), can’t work out or stand fast because of POTS. Cold, stress, sweat, activity all trigger me too, plus unknown triggers. Only one ovary works from PCOS, suspected EDS too, so I question if having kids later is even safe. I just want to swim with friends, hike, get out of bed without crushing fatigue, work normally,I can’t even walk outside without crying when I hear an ambulance. My short term memory is messed up since the oxygen deprivation and it frustrates me.
I’m holding on tight because I know the pain of losing a loved one.
I am staying for my friends and family.
But the thoughts get louder; weeks ago I just thought „I‘d rather not be here anymore“ but in a sense that I want to switch off my head or my mind and just be for a while. It slowly went to planning a BBQ with all my friends because „you never know when your last day is“. Initially for my health. Now for my mental health… I’ve thought more and more times that I just don’t want to do it anymore. Yesterday it got the worst it has ever been in my life. I had intrusive thoughts which I did not pursue. I tried my best to be kind to myself and did something I usually don’t do. Ask for help using the hotline and well contacting my friend who couldn’t come anymore that I mentioned above.
My thoughts scare me, I can still control them, all goodie, but I’m scared if it won’t stay that way…
My childhood trauma, my physical health and just everything had gotten too heavy for me to carry. I’m known for being the strong, super empathetic, crazily well reflective and communicative sunshine. But some people don’t see through that. And I don’t blame them either, that’s not why I say this. I miss her. I want that spark back and enjoy life again. Man this is my last holiday and I couldn’t even book a vacation bc yeah😃 an anaphylactic shock on the plane doesn’t sound good no?
Anyways I’m sorry if this is not structured well

Questions over questions over questions.

After being admitted to the hospital twice because I suffered 8 „anaphylactic shocks“, where I had 1x 24.05.; 4x 26.05.; 1x 27.05.; 1x 6.06. and another one 28.06. Two „shocks“ were severe with BP being 80-45 and another where oxygen lvls dropped to 63% (idk how that’s just what bloodwork said), in all events epinephrine was injected due to almost being unable to breathe at all. we have been wondering whether I have MCAS, since I’m in the middle of being checked for EDS and I have the following diagnosed:

Fibromyalgia
Asthma
ADHD
POTS
PCOS
HSD

As some may know there has been a lot of publishing on the so called trifecta of POTS - EDS - MCAS. My symptoms fit the ones of MCAS so what do you do after reading studies? (I do not have any social media besides Reddit so I purely found out abt it via studies and googling, no not to self diagnose, curiosity), you ask a doctor (at least you should, right?)
So that’s what I did. While waiting I cut down „potential MCAS triggers“ and started quercetine next to Levoceterizine. My blood work came in and showed: no elevated tryptase. Therefore, no MCAS.
Many people describe having MCAS despite having low tryptase levels, so I thought, oh maybe that’s it? I did read some studies and apparently it is still not possible to have MCAS without elevated tryptase. So I thought well that can’t be it then.
Then, I saw an internist in education for immunology (who also referred me to an allergist in NL, I also saw one in GER who said the same). What he suspects is still mastcell related, just not MCAS, but cindU or CSU (Chronic Induced Urticaria/ Chronic Spontaneous Urticaria). I get itches and hives next to dermographism, GI issues and closing throat, so I always assumed it was anaphylaxis. Turns out it could be angioedema. If needed an EpiPen still needs to be administered.
Some triggers are unclear, known triggers for me: exercise, stress, sweat, cold, water, scratching of the skin

So, my question. What are your experiences?
For diagnosing I will see my doctor this is not what this post is about, I’m not a fan of self diagnosing. Looking for ways to navigate through life between doc appointments and all the other bs my body is putting me through 🫠😂 Pls be kind, the past months been rough.
So far I have Levoceterizine and UAS7 to monitor symptoms and potentially being eligible for Xolair.

Thanks for any suggestions, experiences, whatever is on ur mind🌻
Sorry if this post is confusing lol

Hey everyone,
Not sure if some remember my earlier post, for context I’ve attached the link.
I finally managed to get an appointment for EDS in Germany.
Regarding MCAS: I’ve had another shock (so 8 now) last Sunday because I inhaled BBQ smoke which is known to be a mastcell trigger. I went to the doctor today (internist in education for immunologist) And he said this:

It is most likely CSU (chronic spontaneous urticaria). The genuinely life threatening anaphylaxis that I had 2024 after touching amoxicillin (which I know I’m allergic to since 2008) wasn’t an anaphylaxis bc it simply can’t be that I have an anaphylaxis just bc I touched it🤡. Also turned out the hospital didn’t fully write down all of my symptoms when coming to hospital and he was like „yeah it is most likely an edema that causes breathing trouble because your tryptase is normal and that’s a conditional requirement for MCAS“🫠 He proceeded with telling me it’s a trend in these times of social media and he has patients like me every day at least 4x (good thing to tell a patient cough sarcasm). Basically he said all of those reactions were no anaphylactic shocks, meanwhile my skin, respiratory system, cardiac system and sometimes GI tract react.
Then he said I can eat normally because low histamine diets aren’t proven to be helpful 😃
Like sir I was lying in the pharmacy, unconscious after having the second anaphylaxis that day with a blood pressure of 80-45 with foam coming out of my mouth and my right eye twitching and you wanna tell me I DONT HAVE ANAPHYLAXIS???
So anywho I need to fill in a diary now and start with 4 pills of Ceterizine (ofc just swallow 4 pills it’s not like it makes you tired and I have a life I wanna live🥰) and then see. And only then if it still doesn’t work I could MAYBE get Omazimulab. Ohja and the trifecta of POTS EDS and MCAS is also not proven. I mean I get where he is coming from but there is still a significant amount of people still having that pattern of illness.
Any comments are welcome I just had to vent bc I’m done with healthcare. I’m suffering each and every day, have excruciating pain, anxiety, fatigue and just no more energy

I am genuinely curious!
I’m a pagan that believes in spirituality, Celtic traditions and witchcraft and in the tenets of satanism. Meanwhile astrology has always interested me - it still keeps questions open. I just don’t see how it makes sense (I don’t mean that in an offensive way, I’m trying to UNDERSTAND). What pieces am I missing? Entering that realm just seems very hard for me in comparison to my other beliefs. Like I read what different planets, houses and signs mean but I need the how and why. Why is a November sag different from a December sag but then also different depending on their entire birth chart? How does the calculation work? You know what I mean??

SO. EDUCATE ME PLEASE.

What do you know, why does it work, how does it work for you, what are your experiences just dump everything i seriously am looking forward to different perspectives.

Istg if anyone comments „It doesn’t work“ jokes on you that is NOT the question.

I thank everyone upfront who takes the time and effort to explaining and helping me learn✨

I am close to desperation. Before I start: Dutch and Germans, I need your experience for getting the diagnosis. Personal experiences with the same diagnoses from any other nationalities are also welcome❤️🦓

I got a referral to the klinische genetica Erasmus MC due to the following standing diagnoses:

POTS
PCOS
HSD
Fibromyalgia
ADHD
Asthma
Verbally diagnosed: psoriasis

(Cold-urticaria) my body reacts to stress, temperature change and especially cold temperatures and high histamine foods/ drinks.

Since 24.05. (today is 8.06.) I have suffered 7 anaphylactic shocks.

Patterns noted :
- temperature change especially cold
- most severe shock I had when I consumed citric acid, „natural“ aroma, artificial color and sweetener, coffee, energy drink (ik ik …I shoulda known)

Also got heavy GI involvements especially with gluten like holy moly. My skin is SUPER stretchy (will attach pic below), bruises and gets damaged easily.
Don’t get me started on my veins, last time I was in hospital they couldn’t place an IV - as soon as the needle was removed from the tube my veins collapsed. I look ridiculous 😅🥲

Allergist gave me prednisolone for my most recent anaphylaxis (Dutch healthcare only provided more epinephrine and tavegyl 1mg but it didn’t work) and told me to go to a dermatologist for MCAS and biologica like omazimulab. Alternatively I’d like to try quercetin (any experiences?).

So far I take

• • Ivabradin 5mg for POTS
• ⁠Started with GEN1 H1blocker Ceterizin -> Tavegyl 1mg now GEN2 H1 Blocker Levoceterizine 5mg
• ⁠Bupropion 300mg for ADHD

• monks pepper for PCOS
• ⁠Magnesium Bisglycinate for fibromyalgia
• ⁠For the next 3 days 100mg prednisolone

• wanted to try Quercetin to try stabilizing mast cells(any experience?)

Erasmus MC declined me because apparently my symptoms aren’t serious enough and the only entry that could be possible for me is looking at my scars and measuring my skin elasticity.

The list of symptoms is endless…
Migraines with aura, fatigue, brain fog, translucent doughy skin that is very fragile and bruised easily, broad feet with small „stacked on“ toes, relatively small fingers compared to my palms, losing total strength in hands and them „closing up“ (sometimes), involuntarily losing „signal“ in legs for not even a second followed by uncontrollable „twitchy like“ movements as if the signal got stuck and suddenly comes back all at once, blue sclera with a greyish circle around iris, GI issues, temperature dysregulation and excessive sweating, idk if that counts but I always suddenly have to pee badly instead of slightly feeling the need to, narrow gum palette and (according to my dentists) weirdly developed teeth, and my veins always roll away/ pop/ blood not flowing.

That’s a lot of input - ANY comment regarding EDS or MCAS is really appreciated. 🙏🏻

Hello everyone, I’m writing this hoping to get some answers.
I am currently waiting to get tested for EDS, current diagnoses are

POTS
PCOS
Hypermobility
Fibromyalgia
ADHD
(MCAS) -> I figured I react to the cold but never got it on paper

Three days ago I had an anaphylactic shock used Epipen, it suddenly got very hot weather wise and I seemed to also react to heat now.
Now, yesterday I had 4 (four!) anaphylactic shocks.
I used two EpiPens and got two more adrenaline shots in the hospital.

-The first shock happened after cycling to uni for 20min in like 24° ish. Was in the classroom, not too hot not too cold. First symptoms developed quite quickly, actual shock came an hour later, ambulance came and dismissed me after 20min.
- Second shock: went to the pharmacy to get new epipen, pharmacy was significantly colder than the outside. Had a severe shock including rashes and itches like always, trouble breathing leading to hypotonia, increased spit foam coming out of my mind, not reactive/ unconscious and a twitching eye.
- Third shock: Going from the ER into the shockroom (cold to even colder)
-Forth shock: Been on room with stable for two hours. Trigger not clear, I suppose highly alarmed immune system

For a decade I’ve been on 10mg ceterzine which seemed to help, ig not anymore so they put me on 1mg Tavogyl since yesterday.

Has anyone else experienced this? How did you cope? What was the reason ?

Edit: I am anaphylactic to amoxicillin and had a shock in 2024 bc I touched it (yes only touched). I’ve changed my diet to low histamine a week ago.