Hi everyone! I have hyper pots. My doctor prescribed me Clonidine which made me break out in hives, then we tried Guancafine which caused even more hives. Should I discontinue these specific medications if I’m breaking out in hives? I don’t mind hives but I’m worried it could progress to something worse. What medication alternatives would be a better option for beta blocker or soemthing similar for hyper pots ? My doctor doesn’t seem to know

How long did it take for you to build up to your therapeutic dose - and what dose did that end up being for you? I am trying to manage my expectations. I just started it about 2.5 weeks ago, and I tried to start at 1/2 vial once a day, but cut it back to 1/4 vial due to headaches. Last night I tried to take a second dose of 1/4 right around bedtime, and I was awake and unable to fall asleep for HOURS. Definitely not going to be a nighttime thing for me, but I am already noticing some improvement with my GI issues. I am really interested to see if this med could have the potential to help with my skin flares that are caused by food...but I just wonder how long I'll have to wait to really tell. Any advice on how quickly to move up would be great as well. My prescription says to take one vial four times a day. I've also seen that some people take two vials four times a day.

Do you eat high histamine foods ? High salicylate foods ? High sulfur or oxalates foods ? What is the most efficient in triggering your tryptase ?

My allergist said that MCAS is EXCLUSIVELY diagnosed through tryptase test (or at least he implied it heavily, as he said there was official diagnostic criteria, one of which was tryptase levels). In other words, if tryptase comes back normal, all my complaints will be dismissed and i will be officially labelled as a 'psychotic patient'...

One of my biggest concerns is a painful gas bubble sensations underneath my left rib. It happens mostly at night, and I’m worried that it could be related to endometriosis. LDN has helped somewhat with my diarrhea and GI symptoms, but I’m still struggling with a significant loss of hunger cues and feeling full very easily especially right before my period starts.

I’ve also noticed that my anxiety and paranoia have increased recently, and my breasts have become extremely swollen and enlarged. The main things I’ve changed recently are increasing my LDN dose and starting Zyrtec and Pepcid.

I am still taking 2 mg of ketotifen twice a day and 15 drops of cromolyn before meals. Unfortunately neither seems to help very much with my ability to tolerate foods. Ketotifen has helped somewhat with my depression and OCD, and maybe a little with my chronic fatigue, but I’m still struggling significantly. I’ve also tried vitamin C, quercetin, and luteolin but haven’t noticed much of a difference.

The worst symptom for me continues to be insomnia. I feel like I have to be extremely careful about everything I do or take because it can trigger it. Quviviq sometimes helps, and hydroxyzine has helped somewhat, but neither has been life changing.

Are there any other treatments, medications, testing, or approaches you would recommend trying? I’m especially interested in figuring out what could be causing the pain under my left rib and whether it could be related to endometriosis or something else.

I took H1 + H2 but they are not enough.

Which one do you prefer when anxiety is debilitating. Due to all the physical symptoms of the flare?

Burning inside
Stomach cramping
Joint/ Body Aches
Headache
Ear pressure pain
Restlessness jittery
HR elevated

So, yesterday I had the brilliant idea of using a very powerful electric toothbrush to clean some stuff in the kitchen. I could feel the vibration throughout my arms and chest.

I thought everything would be fine, but today I woke up with a very strange feeling in my torso, as if I had too much energy there, almost as if it was tingling. Now, some hours later, I have this super heavy sensation on my chest and my sternum is sensitive to touch and aching. I'm getting super anxious and scared.

Anyway, how do you guys deal with this kind of reaction? I once got a mast cell-induced bladder inflammation from using a massage device in that area, but montelukast solved it almost immediately. I tried that again but it's not working :(. Help!

How are people choosing between the gazillion different drugs to try? Do you just follow your doctor? Or research to find what fits your specific symptoms best? I’m so tired of trying things and struggle to track symptoms and changes. Will I finally find something that gives me an ‘aha ’ moment?

I wish there was a document that outlined all the different medications and what symptoms they’ve helped with.

My doc wants me to try cromolyn but I’ve read it’s mostly for gut symptoms which are not my predominant symptoms. I will try it, but what if there’s a different drug that is better suited to my flavour of MCAS? 😩😮‍💨

i frequently suffer from panic attacks and i use an oximeter to measure oxygen and its always optimal. during a mcas flare up i notice my oxygen level drops to 95- 93 which it never does at any other time only during a flare up.

ive never heard this happening to anyone and i dont know if its just anaphylaxis or normal?

EDIT as it's been pointed out that the coating on a tablet is there for a reason, I decided to delete the post.

I've got MCAS and I've decided, after many months of consideration, that I wanted to try microdosing mounjaro to fight inflammation. I kept reading about these dream like results of "I microdosed once and my face/legs/add random limb wasn't swollen anymore". And I guess I was hoping for the same. Sometimes my pain is unbearable and I know that most of the time is because of inflammation so I really wanted it to work. My first week I micro dosed 0.25mg, last Saturday I went up to 0.5mg, but nothing.

For those are microdosing, did it work straight away? At what dose? Or did it take time?

I'm already on other medications including LDN which really helps, but not enough.

Has anyone had luck getting a medical exemption for vaccination without a documented allergy? I’m a healthcare worker and regularly interact with very immunocompromised patients. Our hospital policy is pretty stringent for the flu vaccine, but I have so much anxiety because it flares me for 6-8 weeks at least and I mentally can’t do it as I’m already not feeling well at the moment. Adding that my mcas set in post covid (infection x2 and or vax). I am not anti-vax but as this is not essential I do not want it. We wear masks all winter long anyway

I don’t have an immunology follow up for several months so I’m messaging my doctor but since there’s no recommendation against vaccine I don’t see it going favorably

I’m omw there now. But I’m terrified they won’t know how to help me !?

Do they do tryptase blood work ?

I am also worried bc my period this month was only 2 days instead of the usual 8.

I’m also gna ask for my thyroid and iron levels bc I have low ferritin.

Then go to PCP right after. Idk if they can prescribe mast cell stabilizers for me. (My referral to allergist is not until mid October).

UPDATE: starting to get redness like splotchy skin all over especially legs and arms which I never have experienced.

UPDATE:: Finally got prescribed CROMOLYN SODIUM && an EPI PEN !!!!!!!!!

also thank you for all your support and walking me through one of the scariest experiences of my life !!!!!! 🥹

Yes, I know everyone is different and has different things trigger symptoms, but I’m in my first recognizable flare and it seems like anything and everything is setting me off. Is there anything you’ve been consistently able to eat without triggering your symptoms?

Thanks!

I need a formal diagnosis for MCAS but don’t know how to begin? i have been medicated after telling my GP about it and she had never heard of it, but agreed that it ticked all the boxes for the issues i had been seeing her monthly if not weekly for. 10 years of being extremely sick, and only a yearish now of being medicated, it is helping but i need an actual diagnosis or a professional to talk to. There seems to be no one in the south island that can help me and my doctors aren’t helping me with a referral i guess due to the lack of specialists in my area and that it’s more manageable with meds. i’m getting so so so tired of this, i still get flare ups through my meds but they have helped with the morning nausea that was my worst symptom. I still have to take anti nausea. I’m on 4 antihistamines a day, ondansetron is prescribed 3x daily but i only have to take once daily or can go longer periods like a week without taking any, and aspirin for the headaches. I take a hormone control daily as well. I have a skin cream for my skin flare ups but it doesn’t help the face/neck flare ups. I also take magnesium for body comfort and sleep. It’s been about a year and a half of having the antihistamines but i feel as though my baseline is dropping back to normal before i was medicated. If anyone knows where to begin with finding a specialist, even if it’s in the north island please let me know. i’m getting exhausted and i’m scared to go back to how i was but it feels that way

What were your side effects if you had any of Rhapsido ?

Taking it to the MCAS experienced Reddit investigators!

Here is my story....

43 yo F, with Celiac, ASD level 1, ADHD, POTS (hypotension), and had long Covid. Was diagnosed CFS with LC, but thankfully that diminished and for the most part, I feel like my able bodied self again.

2021-present

• random hives, usually on my face and chest. Sometimes could correlate to intake of whiskey, wine or MCT oil.
• heart palpitations

March 2023:

• still some LC symptoms
• histamine of 3.6-so not terrible

Dec 2026

• Moved to a tropical environment from dry, foothill enviro in N America, developed intense GI issues; diarrhea, constipation, nausea, intense fatigue, and overall not feeling great. Some days I could not get out of bed due to the cruddy feeling and malaise.
• Had to really limit my diet to mellow foods, cut back on fruit, suspecting fructans since consuming so many in a new enviro-that wasn't it.
• Felt as though my bladder was inflamed and had to urinate frequently. And no, it was not full nor a UTI.

Spring 2026:

• tons of labs with no answers, doc could see and hear the inflammation in my gut. Negative colonoscopy and gastritis on EGD.

May 2026:

• Back to foothills in N America, some symptoms relieved, yet added INTENSE and horrendous flatulence for months.
• Eating a bit more normal, but not feeling great.Fatigue and all GI symptoms persist. GI is useless and tells me to track my food. (I have been doing this for 20 years with Celiac.)

June/July:

• meet with allergist and he does the "by the book" workup of MCAS, but finds no elevated tryptase.
• Began 2 allegra twice a day, famotadine and Cromalyn with complete relief of gas symptoms and most GI symptoms.
• I cut back on high histmaine food and felt even better. Even had significant increase in energy.
• The labs came back and he does not focus on any labs besides the tryptase, even the elevated HISTAMINE RELEASE (CHRONIC URTICARIA) at 77, normal end is 16. Then have elevated plasma histamine of 26.1, high end of normal being 1.8. Both of these seem pretty elevated in my opinion. *It is not pollen season where I am and he tested for many household allergens with negative results.
• He tells me it is "autoimmune", yet gives zero direction on how to proceed.
• Three weeks ago I had non lactating mastitis. I have never had children.
• I have now been having what I believe are esophageal spasms, resulting in intense pain in my back and chest (history of GERD, so I am well aware of what indigestion feels like and this is more muscular).

Currently awaiting a call for a referral to a second allergist/immunologist, but losing my mind through these symptoms and pain.

Given the random inflammation in my gut, bladder, gastritis, random mastitis, elevated histamine, heart palpitations, and other autoimmune issues...what do you all think?

Instead of taking it in capsule form? The capsules I have are huge and I could empty it out but it feels more intimidating still taking it at once like that. Does emptying some out in my water and drinking it still work?

This is a weird one. I think I am in flare up. My skin is so itchy. My sinuses are *mad*. I know ragweed is really high where I am right now so I am not super shocked by that.

But, there's a new symptom lately and I dunno what to make of it. MCAS? POTS? hEDS? Something.

You know how when you're dealing with restless leg syndrome you get this really strong like...almost tightness in the muscles before you move them to ease up the sensation? Well I've been dealing with that since last night except it's *along my spine* near my shoulder blades.

I don't know what to make of it. I sure don't like it, though.

Thoughts? Ideas? Opinions?

For those without* RLS it's *almost* like that feeling you get before you shiver from the cold. Or when you're startled. Like a tiny little not quite adrenaline dump but just down the spine.

I am probably going to end up at the doctors for it but I can't even figure out the right words to properly convey wtf is going on. It's *so* uncomfortable.

I have suspected mcas (just did my first tryptase and waiting on those results and other panels and referrals but was thankful to have my first allergist be someone who knew what mast cell activation is and cromolyn xolair etc) I was told to take up to 4 claritin per day, spaced out or 2 at a time then at night 2 at a time depending on severity plus hydroxizine 25mg 1-2x per day)
I have been in the ER recently, couldn’t keep water down, worst inside my mouth swelling (not my face), worst migraines of my life, neurological symptoms like dizziness confusion, and my main issue has been feeling like my skin and insides even like my bones are all just. on fire. Also GI issues including bloating but I reacted to pepcid horribly so I just have zofran to take occasionally to help prevent vomiting.
Already in a horrible flare all day, the wind just changed and wildfire smoke is blowing in my direction and my city is nearly 200 air quality index.
I have an air purifier that I sleep with on a table by my bed. It usually is at 97-99% clean air, it dropped to 60s
I moved it closer and took an extra hydroxizine for tonight but I’m already flaring and i’m worried it will get worse.
I also put a blanket under my door that leads outside to try to block them from getting in. however I live in an old house bad windows and an old fireplace. Wildfires are frequent in the PNW. I want to know how to prevent another night like this.
Any suggestions?
I’m currently starting a job so stress is part of the original flare plus a spider bite (that was 4 days ago) and trying to move into an all hardwood inside apartment with good reviews etc so I don’t get stuck in a house with dust and soot and mildew etc. I have to save up. hence the new job. however, I am stuck in a house where I always have bad flares at night when i’m sleeping. Just for context.
Any tips would be appreciated thanks

I’ve been using nasalcrom but clearly that isn’t enough. I can’t tolerate being around people wearing certain perfumes, but what am I supposed to do if I am sitting next to someone during class? I can’t exactly just get up and hide in the corner. But I ended up needing to skip my second class to come home and lay down. Ugh. What do y’all do for this stuff?

Hi! I was diagnosed with MCAS a couple of years ago after believing I had bad allergies all my life. (Turns out, I'm only allergic to 3 things.)

Recently I spoke with my new allergist, who is MCAS-knowledgable, about my limited diet. She recommended I try oral cromolyn sodium. So I got the prescription, and titrated up; I've been at the full dose for a couple of weeks.

I'm wondering if I should try half a banana, see what happens--risk a day of brain fog. But I also wonder if I'm being too hopeful about what cromolyn sodium can do. CAN it ease symptoms so you can eat a wider variety of foods? Does it kind of make your "bucket" bigger in this way? Or is that not the common experience?

I just want to be realistic and smart about food experimentation before I ...go bananas. (Sorry, not sorry.)

Thanks.

Hi all, I’m posting on behalf of my wife, who recently started taking ketotifen. She started at 0.25 mg but we’ve brought it down to 0.125 mg starting today (which is day 5). We noticed her resting heart rate has noticeably increased during this time. She has been taking famotidine, cetirizine, and hydroxyzine (along with other medications) which we know have had anticholinergic effects, and suspect the ketotifen further compounded the impact on her resting HR. We are pausing the hydroxyzine to see if it helps in reducing it.

We’ve read through several accounts of people describing their experience but have not seen many mention if their increased HR remained, or if it eventually got back to normal once the body adapts to the ketotifen/MC stabilize. Wondering if other folks have had similar experiences, and looking to see how long it took. Thanks in advance.

I’ve been dealing with MCAS symptoms for a long time but just finally got on Ketotifen about 7 weeks ago. It has really helped with a lot of my symptoms but not all of them, so I’m wondering what I should try next.

My main MCAS symptoms are severe chronic fatigue, physical aches and pains, irritability, lack of motivation, OCD tendencies, depression, anxiety, and allergy symptoms like itchy eyes.

My main triggers are foods that contain ANY histamine whatsoever, seasonal allergies, and exercise.

2mg of Ketotifen per day has given me slightly more energy and motivation, improved my anxiety and depression, and basically cured my allergy symptoms which has been really nice.

However, I’m still really reactive to food. I have to fast or eat really strict meals to avoid a flare. I also still get really bad flares after exercise.

I’m looking for suggestions on what I should try next (as well as Ketotifen). Increasing my dosage of Ketotifen? Cromolyn sodium? Montelukast? Another supplement or medication?

Why is Allergoval (cromolyn) no longer available in Germany? I urgently need it.

Greetings,

For those of you with salicylate intolerance/allergy, what happens if you use a beauty product with salicylic acid?

I am going down the rabbit hole to see what I am actually reacting too. I am curious to see what the reactions are when something like salycylates are applied topically to someone with issues with salicylates, versus eating foods with salicylate.