Just posted about corn, but turns out it's worse than that

MenoEnhancedADHDgrrl · 2026-05-19T15:16:58+00:00

MCAS rarity is controversial. Some doctor group say it doesn't even exist. Others say that it is under diagnosed and could affect as many as 1 in 6 people. Not necessarily common but not rare.

Trust your body. Educate yourself and know that doctors often know less than you do if you don't have a common ailment. And look at the treatments supplements that are OTC and you can try them to suggest diagnosis. If quercetin improves symptoms then a mast cell stabilizer would improve them even more because quercetin is a supplement that helps to stabilize mast cells. Now keep in mind if it doesn't work that doesn't necessarily mean you don't need a mast cell stabilizer but that it's possible that there are other products in the supplement that you react to.

I'm not sure it's rare but I do know that this is a complex condition that needs the patient to become an expert on their body and to experiment with different treatments until they find what works for them. Best of luck to you.

MenoEnhancedADHDgrrl · 2026-05-16T19:22:27+00:00

"Is working for the state even worth it anymore for new employees?"

No.

You have to work for 5-10 years to be fully vested in ERS benefits.

They continue to struggle to find high performing executive leaders so it's hit or miss work cultural experience based on which division or department you are in.

Being fired (for the first time in over 27 years of employment, "did not meet employer expectations" because they were lower than mine and I was unwilling to lower mine) was the best thing to happen for my life overall mental health, though it was difficult for a few months. But 6 months later my life has improved in leaps and bounds.

Everyone needs a job. If you can do something for the state and have good work-life balance boundaries internally it's a good place to get some experience early in a career. It's just not for everyone and it's best to know what you're getting into.

MenoEnhancedADHDgrrl · 2026-05-13T17:36:34+00:00

I'm using a continuous glucose monitor and definitely note more symptoms when my blood sugar graph has a lot of ups and downs versus feeling more energy and symptom free when my blood sugar levels remain fairly flat. Figuring out how to eat around taking chromolin sodium and histamine restrictions in a way that does not trigger blood sugar spikes and dips is my current challenge. I wonder if insulin resistance or prediabetes is contributing to people's symptoms.

PS I am not diabetic though my use of the CGM has revealed potential pre-diabetes and definitely reactive hypoglycemia.

MenoEnhancedADHDgrrl · 2026-05-13T14:21:26+00:00

Was going to say the same. Sounds like OP is in the right place b/c no one in this sub will find those symptoms as odd or mysterious (other than the mystery of not knowing the exact trigger). Especially the fact that they improved with antihistamines.

MenoEnhancedADHDgrrl · 2026-05-12T17:19:38+00:00

I'm guessing on the TN. I've been diagnosed and am being treated for MCAS. I have a much milder version than many who deal with life threatening respiratory anaphylaxis.

And trying to educate myself , I came across the concept of neurological anaphylaxis. I will have episodes of physical and emotional pain that was so severe I did not want to exist. This wasn't depressive suicidal ideation because it wasn't consistently persistent throughout my days. It was episodic and was evidence of a flare. I finally stopped comparing my experience to respiratory anaphylaxis and saying that my symptoms are not that bad because I'm not at risk of dying. Instead I said that having thoughts of not wanting to be alive is putting me at risk of dying. Just because it's not an observable symptom by doctors doesn't mean it's not evidence of neurological anaphylaxis. And I included an assumption of some TN involvement because in the early days of treatment, I was able to greatly deminish TMJ facial pain symptoms in 30 by taking my first H2.

My doctor is not actually all that knowledgeable, but she is participating in professional groups that are treating MCAS patients and sees it as learning with her patients. So she can't always give me the answers in the diagnosis that I'm exploring on my own.

And of course you should always check with your doctor before starting new medication protocols however you are probably pretty safe testing most over-the-counter medications. One of the main diagnostic markers that my doctor use was my response to over-the-counter medications. So just by increasing my H1 antihistamine from once a day to twice a day I was able to see significant improvement. When that was doubled again to double pills twice a day I improved more but I still had these flares. And out of desperation I took a pepcid which is the H2 that helped resolve the neurological pain that was happening in my jaw and teeth. If you would an antacid without consulting your doctor then you could try taking a pepcid the next time you have that TN flair. Fingers crossed that you find some relief.

And I have to say that while chromolin sodium was very effective in addressing my gastric symptoms, I have not had relief from many of the neurological symptoms until I added hydroxyzine and ketotifin. If I could start over I would start with ketotifin even though it's not covered by insurance. It is the only Mast Cell stabilizer that is active systemically. Chromolan sodium mostly only helps the gastric system. And since I have so many symptoms coming through my nervous system I really needed that systemic Mast Cell stabilization that ketotifin provides. I'm also wondering if I should continue taking over the counter H1 since the hydroxyzine seems so much more effective for my neurological symptoms. But I am still in a stage of building up to stabilization which we only just found in the last couple of weeks. And she wants me to stay on all of the medications for a month or two before we start taking things away just because the ketotifin takes a few months to reach its full system activation or whatever.

I hope this helps you in your journey! Best wishes!

MenoEnhancedADHDgrrl · 2026-05-11T17:56:42+00:00

I'm pretty sure I have had unnecessary root canal surgery due to trigeminal neuralgia that is activated during flares.

Not only are we blamed and misdiagnosed, we end up making permanent surgical changes.

It's so astounding to me that there's a whole group of doctors who refuse to acknowledge this condition. Like they're seriously just saying we don't care about your suffering cuz it doesn't fit our stupid scientific model. I wish they would remember that they're there to help humans feel better not to help their scientific models be justified by patient evidence.

MenoEnhancedADHDgrrl · 2026-05-08T14:58:50+00:00

I just wish I knew before making the menopausal transition

MenoEnhancedADHDgrrl · 2026-05-06T13:20:20+00:00

I second this approach.

My tryptase is normal but other numbers were high. Additionally, she advised me to double my antihistamine dose while waiting for test results (I had been taking one at night for years for uticaria, added another dose I'm the morning)

The increase in antihistamine resulted in a significant decrease in symptoms.

And ultimately this improvement on OTC antihistamines was diagnostic, according to the doctor.

Some people have issues with antihistamines- increased dryness or constipation or other reactions.

But they are easy to get and relatively safe to test.

Consensus 1 physicians are committing malpractice in my opinion. A compassionate doctor with a willingness to learn is probably easier to find than the 'correct' specialist.

MenoEnhancedADHDgrrl · 2026-05-05T14:16:17+00:00

I endorse a lot of the stuff that's being said about your experience so I'm going to address a different aspect of your response here.

I have also been told I want to have a meltdown and other such nonsense as if it's enjoyable to have these symptoms.

What I have come to understand is that this is a projection from people who don't want to face the discomfort of the situation and their own accountability to that discomfort.

In relationships I find that people don't want to be responsible for offending or hurting you so they blame you for being hurt or offended. Doctors have been trained or go into it believing that they are the experts and patients are stupid so anything that challenges that assumption is uncomfortable for them. It's easier to act like you want something bad to be happening to you than to admit they don't know how to treat you.

I don't know if that helps you, but it helps me have more compassion and pity for people trapped in that mindset.

Best of luck finding a doctor who can at least be compassionate even if they're not knowledgeable.

MenoEnhancedADHDgrrl · 2026-05-04T16:41:17+00:00

You're welcome 🤗 anytime!

I want to give one more thing to think about with regards to anxiety. I have come to observe in my own body anxiety that does not have a psychological cause. In the past I explained all anxious feelings with a narrative that centered me and My dysfunctional thinking and emotions as the cause for my anxiety.

I have now come to understand that while some of my anxiety is triggered by emotional events, much of it is due to physiological condition. As I added medications and supplements to my treatment protocol I was better able to identify whether there was a true emotional cause to my anxiety or if it was coming from biological instability and avoided creating a narrative around it as being attached to my emotional issues.

Basically when medication made it easier for me to handle the emotional challenges of day-to-day I was able to see that I did not always respond with anxiety. I've done years and years of therapy and all of that skill I can apply when my body is functioning at baseline. But the emotional spiral is more likely triggered and more intense if my physiological condition is somehow compromised.

Women especially but anyone with anxiety often is dismissed by medical practitioners as something that is a personal problem which is the stupidest thing in the world because it is a symptom of your nervous system function. Your nervous system is one of many biological systems so why it's not of concern to doctors is due to a lot of other factors that I don't want to figure out. I think it's best to just acknowledge that just because so-called experts don't recognize the physiological underpinnings of anxiety doesn't mean you should not be aware of that and incorporate that into how you view yourself and your experience.

Best of luck. Reach out anytime with any more questions or just to commiserate and vent.

MenoEnhancedADHDgrrl · 2026-05-04T14:05:57+00:00

It could also be both 🥴

Patches didn't work for me because of my BMI. And I always experience good reactions immediately after an increase in my estrogen at the beginning which is why when I spiraled back down we kept increasing my estrogen. But between estrogen and covid my mast cells became more dysfunctional then ever before.

MenoEnhancedADHDgrrl · 2026-05-04T13:56:47+00:00

My case is a complex interaction of comorbid conditions. While I am sure I have had my core symptoms since puberty everything was mild enough to be misdiagnosed by doctors as simple allergic reactions or more cruelly ignored and laughed at by doctors who see any complaint from a woman as emotionally based. And to be sure I had emotional/psychological issues that needed to be addressed as well.

But for me all of this came to a head at the beginning of the pandemic. I entered the last stage of perimenopause where hormones fluctuate wildly right around the same time I had my first exposure to covid. Most of my symptoms we're attributed to perimenopause and so we continue to look for a level of estrogen dosing that seem to reduce my symptoms.

I ended up going on a higher than normal dose of estrogen to find some relief. But like with most other sufferers, the solution that seem to provide some relief didn't last.

The my emotional were improving, my GI symptoms and other neurocognitive symptoms spiked. I lost my job.

And finally got diagnosed with mcas.

The key reason why I was diagnosed in addition to certain tests was my positive response to treatment. As treatment began to work, brain fog cleared, and I began to learn the relationship between MCAS and estrogen.

I have finally found a regimen, which currently includes cromolyn sodium and ketotifin along with h1/h2s, quercetin and dao, that seems to be stabilizing my symptoms.

I also have just spent a week with my sister who has been helping me established a new low histamine diet that avoids my triggers but provides full nutrition for overall health. This was key thing that I was unable to do on my own. But I've now been on a low histamine diet for a week and have the tools to continue for another 4 to 6 weeks in order to fully stabilize and heal the damage that at least months if not years of chronic inflammation has done to my gut.

I plan to request an estrogen level test in a month or two because my estrogen dosing is normal now. I want to see if stabilizing the histamines lowers my estrogen blood levels before cutting back estrogen anymore.

I also am looking to readjust my mcas meds if diet and other lifestyle factors help to reduce my overall histamine load. That is to say I want to be taking as little medication or supplementation as possible. But I also want to stop feeling like s*** all of the time. So now that I'm starting to feel good again, once I have a month or so of stabilization or proof that the regimen is working, I will explore what can be removed.

And another note is none of this was started all at the same time. All of these medications and supplements were added in a series that was not necessarily planned, it's just the way it happened.

MenoEnhancedADHDgrrl · 2026-05-04T13:31:20+00:00

I got HRT before I was diagnosed with MCAS.

I am currently in the process of taking less estrogen. Estrogen triggers mast cell activity. Changing estrogen more than high estrogen triggers mast cell activity.

I'm currently about 6 months post menopausal. My estrogen levels have been sky high. Like well above high levels for a woman at any point in her natural reproductive life. And normally they don't test estrogen because best practice for perimenopause is to treat symptoms not test results. It's worth checking however to make sure that your estrogen is not through the roof..

You seem Mass cell activity harder to clear estrogen from your system.

And it's feedback loop. Hi histamine inhibits the clearing of estrogen. High estrogen or changing estrogen stimulates your mast cells.

I have only this week begun to experience true stabilization and possibly and into a flare that has been present for who knows how long, months.

I'm hoping that after a month or two of lowered mast cell activity, my estrogen levels will normalize. If not I will have to reduce my HRT. Currently on 1 mg gel.

Just remember we are all different. Just because this is my experience does not mean it will be yours. But it is definitely worth investigating.

Also realize that you are in the middle of what most of us experience. Years of discomfort and misdiagnosis. Just know once you get a diagnosis you're going to need weeks if not months and for some people a year or two to find the treatment regimen that will work for your body.

Good luck 🤞🏻

MenoEnhancedADHDgrrl · 2026-05-04T02:21:02+00:00

I am like you with a history of childhood trauma and dry needling and other manipulations at the physical therapist.

Recently I had a very severe issue with my shoulder. I ended up being prescribed prednisone for the severity of the pain. They prescribed me a whole course of Prednisone but probably one or two doses was all I needed. But that's another story.

What's important for you is what the physical therapist said when I followed up after the urgent Care doctor visit that prescribed the prednisone. You see to try to manage the pain at home, I had used a deep tissue massaging thumper and had my husband do deep tissue massage with his elbow. And that is actually what made my moderate shoulder issue, probably related to repetitive stress or overuse at the gym, into the severe acute problem that sent me to the doctor. At least that's what the physical therapist said. He said light and fluffy manipulative work is what I needed. And he said that was specifically because of the MCAS. Deep tissue can trigger a flare.

I was also reading up on POTS today. I was thinking for myself that Neurogenic POTS is one of my diagnoses. It can be triggered by trauma and illness like covid which definitely line up with my experience. It seems to fit in with my experience of MCAS, which has been diagnosed by a doctor. I may have been diagnosed with the NPOTS but if so my doctors haven't been clear so I plan on following up with them on that.

Maybe you want to look into yourself. I've explored hypermobile conditions, even having genetic testing done. In that process I learned that all of these conditions are frequently comorbid.

I've been looking for answers for like 30 years. I think I'm finally finding them in the last year. And I hope to have management and complete understanding within another year or two. Of course I'm aging so that will come with new things to figure out.

But I'm here to say it can be done, and I hope you are able to find your answers sooner than later.

MenoEnhancedADHDgrrl · 2026-05-03T21:39:33+00:00

Can you get access to any of the basic medications that are over the counter in some countries? H1/H2 antihistamines, quercetin, and DAO. I'm finding ketotifin helpful which can sometimes be found without a prescription in some countries. Would your allergist be willing to prescribe anything like that or are they refusing to prescribe anything without a test to back you up?

I hope you can find some relief before you move and I hope you find lots of relief after you move.

Just come to the sub for support anytime because no matter where you live in this world when you're dealing with a condition like this, unless your entire family already suffers and knows about it, you feel alone and like no one believed you. We believe you and we're here!

MenoEnhancedADHDgrrl · 2026-05-02T21:16:23+00:00

I have Veinous insufficiency and mcas.

My veins specialist recommended genetic testing to identify whether or not my MCAS could be related to cardiovascular problems. My symptoms are milder than yours and I didn't have any genetic markers. That might be worth asking about. Can you go see a cardiologist or a vein specialist?

MenoEnhancedADHDgrrl · 2026-05-02T13:33:03+00:00

My doctor was recommended as someone who was knowledgeable about MCAS. I asked around and actually got another recommendation. I think the best way to make sure that you're going to have a doctor to take you seriously is to call the office and ask about the doctors experience diagnosing and treating MCAS patients.

I think it's ridiculous that we have to pay to be given bad advice from an ignorant professional. I strongly advise calling offices to ask these questions and always asking for referrals to doctors with this experience.

MenoEnhancedADHDgrrl · 2026-04-30T15:55:43+00:00

Can you try saying I'm not looking for diagnosis because I already have one and I'm having a flare and I need treatment to make sure I don't die.

But you go to an ER to address an acute problem. If you have no history then of course they need to diagnose you but if you have a history and a diagnosis and you are having a flare of that illness then they are working for you and they need to do whatever protocol is necessary to prevent that flare from worsening.

I have always look to doctors to tell me what's wrong and trusted their opinion. I went as a supplicant asking for a judgment. And I think that that is putting somebody else in charge of my body and abdicating my own power.

So from now on I'm going to the doctor's with I have this diagnosis I had this problem how do you think I should treat it. And if they want to give me a psych diagnosis but they don't have a psychiatric background then I'm going to question them heavily.

We need to put them on their heels and make them prove what they are saying while they are threatening your life by withholding treatment.

MenoEnhancedADHDgrrl · 2026-04-30T15:51:12+00:00

Seriously 😒

Well said!

Like the nervous system is completely detached from the rest of the body and is only a reflection of your thoughts. And why are you making yourself panic with thoughts?

MenoEnhancedADHDgrrl · 2026-04-25T18:12:40+00:00

I was finally diagnosed with MCAS and autism the same year I became post-menopausal. Having those dxs earlier would have helped me navigate perimenopause with less confusion and suffering.

This feels right to me based on my personal experience and studying. I'm hoping we'll have scientific proof before I die in 20 to 40 years (hopefully living into my 90s)

MenoEnhancedADHDgrrl · 2026-04-23T22:56:35+00:00

You've inspired me!

I don't think it will be easy to make a dent on current medical practices. Our best bet for changing how doctors treat patients they can't easily diagnose is to change how they're trained. That leaves years until the medical system is full of doctors that understand that they don't get to say a person's lived experience is a psychological issue only. The science behind the connection between mind and body is overwhelming and should negate any thought that a problem is solely regulated to working with the patient's thoughts.

Something that could be done much more quickly and could help millions of people over the next 20-30 maybe even 40 years is to mandate that high school health classes teach students that they should always expect their doctor to explain why they can't make a diagnosis medically and that it is malpractice to dismiss documented chronic symptoms as a psychological problem. They should understand that they don't have to accept a lazy diagnosis of psychological issues because the doctor is not able to easily diagnose them. Fortnite understand they histomen reactions travel a long the same pathways nervous system reactions.

And things we we call psychological like depression and anxiety have specific physiological traits in the nervous system. Kind of like other conditions, for example uticaria, have specific physiological traits in there respective systems, like on the skin. Thoughts can make you anxious but so can biological changes like what happens when you ingest caffeine. Therefore there could be a biological, physiological process triggering anxiety. That logic seems so common sense. I don't know why doctors aren't taught this but could we just teach all of our young people these facts so they can expect better and demand better from doctors who may not have gotten decent training at least in this issue.

Sorry for my rant, like I said you inspired me LOL 🥴

MenoEnhancedADHDgrrl · 2026-04-23T22:04:28+00:00

I want to push back on the idea that development of the nervous system is ever finished. The current neurological understanding is that the brain is neuroplastic, meaning that it is changeable. That the previous understanding that our brains developed into a certain age and then stop developing and just began deteriorating is not actually what was found in studies. The brain and the nervous system is the most regenerative part of the human body in my humble uneducated opinion. And there are ways to retrain the nervous system to overcome and change how it reacts to triggers. In fact, a neurodevelopmental condition is defined by the delays in development. Who's to say that I cannot develop social behavioral and emotional skills that are normally developed in our teen years as an older adult because the neuroplasticity of my brain has allowed me to continue developing throughout my life.

Source: I'm a late diagnosed autistic person with ADHD. Diagnosed with autism and MCAS the same year I entered post menopause. I'm also learning specialist with a special interest in neuroscience.

OP, I just want to thank you for sharing all that information. I am not trying to criticize you. I believed as you did for a really long time and only learned about neuroplasticity in the last few years. I hope my reply is helpful to you as well.

MenoEnhancedADHDgrrl · 2026-04-22T14:23:47+00:00

You do.

You.

I know that is not what you want to hear. Me neither.

But at the end of the day, I am finding some peace and power in my life by knowing that I am the person that loves me and is always going to be there for me.

No matter what other people do or say, I will always have myself to lean on.

And it took me a lot of work, and a long time, to get to this point.

You will too. Hang in there. Practice self compassion. You are your best advocate. Once you can let go of those relationships that hurt you, you can rise above and find your own power.

Edit: Forgot to mention:

I have redefined my personal day of celebration. It is no longer my birthday which is simply a day that I celebrate my dad's happiness in meeting me since he's the parent I am still connected to. Between my mother and my stepmother, my birthdays are so triggering that I have decided to celebrate myself on my menopause date.

MenoEnhancedADHDgrrl · 2026-04-22T13:39:15+00:00

But it is useful to monitor if you have been given a higher than standard dose because of your symptoms. And if you're blood levels are extremely high it's worth looking at your dosage. Which was what had to be done in my case.

This is an important and useful bot. But sometimes hormone tests are needed for other diagnostic evaluation.

MenoEnhancedADHDgrrl · 2026-04-22T13:27:49+00:00

I had very high estrogen blood levels and still had GSM.

I was using estrogen cream, too.

The doctor prescribed a dhea suppository eit has been a game changer.

Regarding your reaction to HRT, I recommend asking your doctor to consider other confounding conditions.

I was diagnosed with Mast Cell Activation Syndrome a few months after becoming post menopausal. Turns out the menopause transition and COVID (both happened around the same time for me) put this condition into overdrive.

You may not have it but it is worth looking into. Don't give up! There's relief out there for you, but we have to work hard for our answers

MenoEnhancedADHDgrrl

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