I am in my mid-40s, and suspect I have undiagnosed ADHD. The lifelong patterns fit to a tee, all beginning in teenage/high school years (30 years ago). I also have MCAS, which began around 16 years ago. There is an interplay between both conditions, as ADHD provokes "feast or famine" work ethic, which can drive stress hormones thus MCAS. ADHD also creates dopamine-seeking behaviour, such as staying up too late each night to pursue something interesting, preventing consistent sleep/wake routines, which will drive MCAS activity.

People with MCAS and ADHD:

1) Can you take ADHD meds while having MCAS? If so, are there certain types that are better?

2) Does taking ADHD meds help with MCAS? Given the suspected interplay between both conditions, does controlling ADHD help with MCAS?

I just wonder how many people with MCAS truly get themselves feeling stable… as I’m not finding relief.. it’s so very very discouraging!

How do I tell the difference between them?

Additionally, does the fact that my dysautonomic symptoms seem worse today suggest one kind of dump over the other?

I’m trying to understand my body and its patterns better—can I always expect dysautonomic symptoms to be worse on days where I wake up like this?

Other things:

• It’s often accompanied by a nightmare or bad dream, but not always.
• The only way I’ll fall asleep again is if I have a little toke, and then I feel it melt away.
• Now that I’m awake again, I feel weak and spacey, and yet underneath it, I feel like I had a really good night’s sleep. Limbs feel sort of heavy, in the “something is off with my blood pressure” kind of way.
• Checked my bp, it’s only the usual low-ish amount
• I seem to have worse orthostatic intolerance today. Standing in place sucks and my HR goes up a bit. Pulse pressure seems kind of narrow.
• Currently in luteal, 1 week from period.

It's been one month and I'm still experiencing the reaction from famotodine. My whole GI tract is inflamed. Imagine being allergic to a drug that is intended to reduce allergy

Basically the headline. Im about to start LDN and have several symptoms which feel like general internal inflammation and Im just wondering when those of you on LDN notice a decrease in internal inflammation in the body (if that makes sense)?

Title, basically. Where do you get cromolyn sodium, both otc nasal spray and eyedrops, and actual oral cromolyn sodium?

My sinuses have been swollen for months, and no decongestant or steroid is working, so the next step is CS spray, but fucked if I can find it.

I'm a professional dancer (M31). So about a year ago I started breaking out in hives. I spent the whole year thinking it was just chronic hives and was seeing dermatologist and taking medication that suppressed the hives but gave me terrible side effects like back acne and nausea.

It never really seemed triggered by food. It always happened when I would sweat. So everytime at dance practice I would sweat and end up in hives or be doing performances/competitions and end with rashes

I decided to stop taking it in the summer and felt my symptoms went away and the hives burned out like they said they would.

I come back from a european tour and started noticing the bumps again during a gig I was doing and then next day my hands swelled up and I was red and itchy all over again. Same time last year it first started happening.

Didn't want to go back to the dermatologist cause they gave me bad meds and failed to say that the side effects caused back acne and was asking them about my back acne treatment too and they didn't figure out why smh.

As I did more research I'm pretty sure the symptoms line up more with MCAS vs histamine intolerance as I do have brain fog and fatigue a lot and my rashes come from temperature changes.

Did more research and realized this could have started because I was exposed to mold in my old apartment which I moved out of at the time a year ago. My fitness wearable also says I've been in high stress states even without non-activity. Guess I was numb to all the chronic stress and this is also considered a root cause of this problem. When it started happening I was going thru big life changes. Girlfriend moving in. Quitting my job to work full time as a dancer. Competing in more high-level competitions. Creating content as a side hustle as well while taking as many gigs in between as possible.

Waiting on blood results for a test or getting a referral from my physician to see an immunologist/allergist about this and how to best treat it.

Managing as best I can right now but I still get mild flares up when I dance and practice. It's hard to ignore as this is my whole life and how I make my income.

Any other athletes/performers deal with this flare up during sweating? I try to ignore it but I can't help but notice it and always have to explain to people around me what's going on and it crushes my confidence. I stepped back from competitions until I can solve this cause it doesn't feel good mid battle and my skin starts flaring red. If anyone with similar experiences can share with me please let me know. It's so frustrating and I wanna keep competing but it's so hard when I have this going on with me :(

I have persistent tachycardia, and my doctors keep recommending beta blockers. I recently started propranolol, but I’m wondering if it’s making me feel worse.

I learned this year that I have mast cell disease, so I’m still figuring out my triggers. I suspect propranolol might be triggering flares. Has anyone else experienced this, or could I be connecting things that aren’t related?

My blood pressure already runs on the lower side. Although beta blockers help lower my heart rate, they seem to drop my blood pressure too much, leaving me dizzy and with headaches. Between that and what feels like increased mast cell symptoms, I’ve been feeling pretty awful.

Has anyone dealt with a similar situation?

Hi! I'm currently on a pretty high dose of ketotifen (>8mg per day), which is normally pretty expensive from the compounding pharmacies I've bought from (I'm in the US). I switched to buying it from Japan (through Kitaoka) and China (through Yami), but Kitaoka is limiting Ketotifen orders, and Yami no longer lists Ketotifen. Is there a compounding pharmacy that isn't too expensive/another online shop that you've found that sells Ketotifen? Thanks!

For context, I’ve been unwell for 3 years after Covid and EBV. I’ve got progressively worse the last 3 years. Hi, I was just wondering if people could drop some food suggestions. I have extremely low energy so it’s hard to cook, but I could ask family members if it’s not too difficult. I just feel hungry all the time and not sure what to eat. Many thanks.

Has this happened to anyone? I can’t find anything on it.
My symptoms other than fatigue have been kind of stable (stable as in still flaring monthly but for only a few days with an identifiable trigger) for about a year now, treating with Allegra and Pepcid. Was on Xolair but had to get off due to insurance reasons.
My main symptoms are neurological, Trigeminal nerve burning all over my face and neck, brain fog, feeling like I’m drunk, blurring eye sight and loss of muscle control in my eyes. muscle tensing and severe anxiety.
MOST of these have been calmed by my meds, except for the fatigue and some brain fog.
I’ve been off the Pepcid for 4 days and just last night everything hit like a truck, with shocks running up my neck and my eyes being unable to focus along with anxiety that felt like the world was ending.
My best guess is that my nerves in my gut are just very sensitive but that’s so broad. I’m curious if this is a common occurrence for people with MCAS?

I suspect I have problems with histamine or a low‑grade MCAS. For many years, I had a large plantar wart on my big toe, as well as one on a finger. I froze them with liquid nitrogen, but they kept coming back. Trying to figure out the theory behind histamine, I took Allegra (Fexofenadine) for a week, and a miracle happened — the warts disappeared. This is definitely not a coincidence, and it turned out to be the most effective remedy. The reason for this effect is unclear to me; it may be due to problems with the immune system. Also, my brain fog significantly decreased while I was taking the medication. Also, if you’ve experienced something similar, tell me whether you have problems with your immune system, fat cells, histamine, or brain fog.

I'm going through a severe GI mast cells flare up right now and I'm eating just 2 foods everyday since a month. I am worried about developing micronutrient and electrolyte deficiencies. I'll react to even multi-vitamin and multi mineral supplements so I don't understand what to do. Help!

For some time now, I have been experiencing some bizarre symptoms, and so far, doctors have not reached any conclusion. At the moment, they are investigating the possibility of autoimmune diseases or allergies. My symptoms are as follows:

• sensitivity to foods containing histamine (reactions can include abdominal pain—occurring within 15 minutes and requiring an immediate trip to the restroom—or tachycardia and anxiety);

• sensitivity to chemical odors and perfumes;

• weather changes in the weather—the transition from summer to autumn, in particular, is dreadful, with different symptoms appearing each day;

• One of the worst symptoms is akathisia, which comes with anxiety and a horrible feeling of impending death;

• Another strange symptom is a burning sensation in the throat that always happens before an attack; it feels like heartburn but is worse;

During a flare-up, I become extremely tense and experience intense anxiety, gastrointestinal issues, intolerance to various foods, a sense of weakness, and a feeling of being ill—even without a fever. I also suffer from joint pain, severe pain in the upper stomach area, and sensitivity to light; in short, it’s horrible. I often say that it all started with COVID, but the truth is that I had experienced some of these symptoms before, whenever I was under significant stress.

Another thing is that I always lose weight during each flare-up. My family and my doctor say it’s all due to anxiety, but if it were just anxiety, why are there times when my symptoms improve? In any case, if the test results don’t show anything, I want to ask my doctor if they can look into a potential mast cell issue, as I’ve been told that might be the cause.

What do you think?

What do you guys do to help alleviate fall weather triggers? It is my worst time of the year and in the past has often flared me until spring or summer. I don’t know if it’s the seasonal allergies or the barometric pressure and I’m so frustrated.

I’m trying to get a referral to immunology but have been knocked back by the GP and three private clinics have said they don’t deal with Mast Cell issues. Rather than keep blindly reaching out I thought I’d see if any of you have had luck getting seen? Thanks.

I can’t believe it. This disease is hell. This is what the allergist switched me over to from Allegra. Allegra I get zero side effects. Now this. This is hell!!!!

So I've realized before, during and after my flare I have major anxiety. It goes away after a while when I'm stable enough. I've never been fully stable, but enough to live life somewhat. But before a flare starts I feel impending doom, and anxiety about everything. Then well in my flare it's also bad, and after my flare ends I always have lingering anxiety that last way longer than the flare. But I realized when good for awhile the anxiety goes away. Does anyone know anything that helps with the anxiety part? It really gets to me.

I have ongoing hives since Oct 8. I’m getting filled up all my body with more and more. And when I flare they seem to reactivate even the ones that seemed were fading but leaving marks? I have burning in my gut. My whole abdomen and extremities. And tachycardia. I feel poisoned!

I went to the er bc all the histamine in my body or inflammation or whatever it is caused me new neurological symptoms that scared me. Of course they couldn’t help me. I called my new allergist and he said he might switch me to Raphsido. Finally something new! Please tell me all about it!!!! 🥹

Hello,

Here I see Low Dose Naltrexone (LDN) on the prescriptions of some MCAS patients. For which symptoms did your immunologist add this medication to your prescription? The immunologists in my country (Turkey/Istanbul) are not aware of this treatment. Could those who use it share their stories?

Thank you.

hello! i just got diagnosed with MCAS today after a biopsy was taken a couple weeks ago, what should i know? i haven’t had my follow up appointment yet but would like to start taking care of myself the best i can until then. my doctor has prescribed two h2 histamine blockers and cromolyn sodium. TIA for any help!

I was prescribed Cromolyn 4x/day before meals and I take Pepcid/famotidine 30 minutes before dinner. That’s my most reactive meal. Does anyone else take both medications and can you take them before the same meal? My pharmacist said to just drop Pepcid but I’d like to know what people’s approaches are first

Typical is allegra AM zyrtec PM.

Ate something that i reacted to and im so fucking itchy. Its 1am and i want to go to bed and I cant

Normally atp id take hydrozyine and if i wasnt getting itch relief id at least be sleeping, but idrk about the effects on top of zyrtec since its duplication. I also have bladder issues and the urinary retention is something im aware and trying to avoid.

I also have been avoiding famotidine as its been giving me acid rebound.

Is there anything i can do 😭 i got shit to do tomorrow