r/MCAS • u/Effective_Scheme2813 • 20h ago
cognitive functioning
I got neuropsych eval because i had an “anaphylactic episode” where i was found on my floor in excruciating pain, slurred speech, confusion, felt out of it. ever since ive had really bad memory problems. i thought i was going insane. BUT. apparently the memory issues are real. my verbal memory came back that i am in the 1%….. SIGNIFICANTLY impaired. I had these episodes where i get really confused and dizzy and feel like i may faint but i typically dont, get rlly shakes too. also feel like my body is like PANICKING but no emotional reaction, feels like veins are on fire. anyway. anyone got any clue whats going on? neuropsych said could be frim MCAS but mcas specialist said ah hell nah its notand referred me to neuro. idk bro why cant they agree. want answers. i am pre med neuro actually hahahah but i am looking at medically withdrawing because i am not functioning. when we did the Topf to estimate my IQ before whatever happened it came back as in 97th percentile and all other neurocog testing was super normal INCLUDING attention/executive functioning. so this isnt screaming ADHD and I am not stupid. Idk man im feeling discouraged🤣
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u/Ok_One_7971 20h ago
My mcas is mostly neurological symptoms. Took 9 specialists to figure it out. When my body is flooded w histamine, it’s the scariest feeling. It’s like my body is on high alert n in panic mode n adrenaline. Racing heart. Doom feeling But mentally I’m not in panic either. I also get lots more like tinnitus, headaches, insomnia, bulging veins, buzzing in body and ocd like intrusive repetitive thoughts. Its brutal. I can see why drs think it’s just anxiety but it’s def not. I have other symptoms too but these are my main ones n the others come n go
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u/Putrid-Ad2390 19h ago
Have you looked into hyperPOTS. Your symptoms sound very similar to my hyperPOTS symptoms. Common to have both and they feed each other. Best wishes.
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u/Ana_Adnah_111 13h ago
I had to wonder about this for myself, as I was so insanely sensitive ‘even when very safe about everything.’ In a phase where not so ‘hyper-reactive’ now but I have to actively work to maintain that. MCAS ‘health regimen’ is a full time job to NOT GET WORSE than I currently am. Haven’t got a diagnosis yet, but it’s been ten months since AI suggested hEDS trifecta and all I have done is follow its advice and it has been correct. Meanwhile three PCPs in a year concerned about my high cholesterol when I can barely eat à thing. I can’t take any meds without a reaction. I need compounded medicine but until diagnosed they won’t prescribe it for me. Diagnosis of autism this year at fifty means I have no idea how to efficiently communicate with any professionals as I tell the truth and they write in notes that I am exaggerating or lying. I am fifty. NO ENERGY FOR DUMB SHIZZ especially from people taking paychecks for dismissing me.
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u/Putrid-Ad2390 11h ago
I got diagnosed with autism late too! 47, I’m 49 now. And my cholesterol has always been high too. Though HRT brought it down significantly. Last blood draw I was right at the line of high normal.
And boy, do I feel ya. The medical trauma is real! Took me 15 years to figure out what we have. I hope you find better docs. If you can find a specialist for HEDS, POTS, and/or MCAS it should make a difference. My MCAS specialist was the easiest doc experience ever. Seeing a POTS specialist for the first time today. 😬🤞Best wishes.
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u/Ana_Adnah_111 11h ago
Doctor says (as others have), in my case it is hereditary and diet unlikely to change it. What about stress? Does that affect cholesterol? Because MCAS is stressful. lol She wants me to take a statin, says it’s absolutely necessary to avoid heart attack or stroke, but ignoring all MCAS/POTS/hEDS complaints so far. I cannot tolerate fillers in meds, but it’s like she cannot hear me say how I have been reacting to things. Non-IgE may as well be non-existent to doctors who can’t see or easily test for MCAS reactions, well I sure as hell feel it everywhere. It’s insanely painful much of the time and debilitating, but it seems ‘fictional’ to most docs.
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u/Ok_One_7971 11h ago
By the time I got to finally see UPenn pots dr, I was stabilized on mcas meds which pretty much helped most of my pots symptoms. I still get adrenaline feeling but not intense n not too long. Usually it happens after I try a new food (my diet is very limited) It def feels like adrenaline but my mcas dr says it’s actually histamine?
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u/Putrid-Ad2390 9h ago
I’m stabilized on hyperPOTS meds, clonidine. But need meds to help with the other type of pots I have.
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u/Ok_One_7971 8h ago
I took clonidine until my mcas meds stabilized things. But that was def the most helpful for a long time
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u/boopswooop 1h ago
Hi, just wanted to say it sounds like your describing my symptoms exactly to a T also… your comment helped me feel a little less alone in all this, sending hugs, extra spoons, and well wishes your way friend
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u/yogo 20h ago
Consensus 2 doctors tend to see neuro inflammation as a legit thing that happens with MCAS. Most allergists are not consensus 2 doctors. They tend to not believe in anything they can’t throw their IgE shots at.
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u/-Lacking-In-Depth- 20h ago
Neuropsych symptoms are recognized by Consensus 2. I think it's probably good to get several different possibilities looked into because you never want to just assume that serious symptoms like mental confusion are always MCAS.
That said, I have really bad cognition issues with my MCAS and they have 95% gone away in the past few years since my MCAS dx and treatment. I think it is worth investigating, especially with the history of anaphylaxis.
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u/Throw6345789away 20h ago edited 20h ago
Have you had your vitamin levels checked, especially B vitamins?
My reduced diet (to avoid reactions) led to nutrient deficiencies. Taking B supplements, especially B6, reduced and eventually stopped some neurological episodes—but finding tablets I didn’t react to took some time.
Some deficiencies can cause neurological symptoms. If you want to explore this, don’t randomly supplement, but get a blood test to identify what specific needs your body has, if any, that can be addressed with supplements.
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u/Silent_Location7044 20h ago
Word finding ( which I imagine is a big part of verbal memory) is a component of brain fog and part of MCAS. Many doctors are ignorant about the extent of MCAS symptoms. I have word finding issues and get brain fog. Can get dizzy. Low blood pressure from MCAS flares can do that. Like you my IQ is still very high. The physical panicking can be histamine reaction or even adrenaline rush to counter it. The medical field as a whole has quite a way to go in understanding MCAS. Try to find a true MCAS expert.
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u/Effective_Scheme2813 10h ago
my word finding is shocking fine i thought itd be part of verbal memory too but apparently the issue is i cant learn NEW info but i can recall old info perfectly
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u/Think_Panic_1449 19h ago
Sounds like Dysautonomia. If safe for you try a Sedufed when you have these symptoms and see if it improves (but if you are risk for stroke then do not try this). MCAS reactions can cause vasodilation, vein expanding, and blood pools in your lower legs, your brain gets starved of oxygen and it makes you feel like fainting. Sedufed causes vasoconstriction, keeps your blood in the brain.
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u/Fragment_B 19h ago
This is what I was thinking. Dysautonomia making it difficult to get blood to your brain. Does laying down help your symptoms, especially the brain fog? I have to work, which I can only do in short spurts, while reclining with my feet elevated.
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u/Effective_Scheme2813 10h ago
i dont rlly have brain fog its like a hit of confusion and nausea and i feel like im on fire i dont like typically have brain fog through the day
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u/According-Club4874 3h ago
plus one to this...all of my symptoms improved, when my doctor treated underlying causes of not enough O2 to the brain including sleep apnea.
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u/Early_Beach_1040 19h ago
I have long covid and have been on cromolyn for the brain fog. When I got put on the cromolyn I had those paradoxical reactions flushing etc etc. So I probably do have MCAS. My cardiologist who RX it for me didn't think I had typical MCAS. I do have history of anaphylaxis from meds and allergies etc and drug sensitivities.
Can I say that the cromolyn has made a huge difference to me. I had tried h1 and h2 but the cromolyn a PITA to get on had to take 1/10 the dose and so slowly titrate up. So absolutely I do think MCAS can cause cognitive issues.
Good luck but I really can't say how much cromolyn did for me 💕
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u/Effective_Scheme2813 10h ago
thankksssss i am on cromolyn and ketotifen AND XOLAIR ahhhhhhhhhhh crazy combo so im questionjng if this is still mcas related
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u/Early_Beach_1040 8h ago edited 7h ago
How long have you been on this combo of drugs? I hear you loud and clear but they do takw some time to work. Clearly you are very impacted. I think based on your narrative that MCAS makes sense but I also understand that it would be good to be worked up just in case
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u/Early_Beach_1040 7h ago
Oh oh oh do you have POTS? I wonder if treating that would help! I have both so it's pretty common for them to travel together
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u/According-Club4874 13h ago
See a neurologist who understands some of the strange symptoms that go with migraine aura. And unfortunately, this is not all neurologists and not even all migraine specialists. This could be a silent migraine in terms of pain, but noisy in terms of aura. If you're a pre-med student, look up cortical spreading depression....you cannot even believe the kind of things that happen, when the brain's electrical system goes haywire! This messes in a major way with cognitive functioning and memory for weeks (or maybe months) after.
I agree with the others that there may be some form of dysautonomia too though. The doom and panic go with what happens during my hyperadrenergic POTS, but i also have had convulsive syncope at times and sometimes speaking gibberish or loss of motor function on on side in a MUMS style migraine. I thought i was having a stroke. It's similar to hemiplegic, but mine was not that for reasons the specialist explained.
Now that i take the right meds and use a trigeminal nerve stimulator daily (Cefaly), I have not had another episode, though I still have some migraine activity. It's subtle until you understand when it's happening. It affects mood a lot and cognitive sharpness a lot and in my case there's always a dull awareness of the area behind my left eye. It isn't painful, but it is very noticeable. Because the migraine aura messes with cognitive processing, you have to work at creating awareness and mindfulness about it. My husband usually can tell me I have something going on before I know, due to subtle changes in mood and affect.
If i can be helpful about this, feel free to dm me. It is not easy to find a neurologist who understandst this, but I had to have brain imaging and eeg's of short and long duration for my situation to rule out other stuff.
I hope you get some help on this -- it's scary!
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u/Putrid-Ad2390 19h ago
Besides my red cheeks most of my MCAS symptoms are mental health stuff. I explain the feeling it gives me like this: agitated, slightly paranoid (feel like everyone is mad at me), and I’m about to get in trouble. Heavy feeling of guilt, shame, and insecurity. And like I want to come out of my own skin.
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u/UntoNuggan 14h ago
I definitely think it's worth getting checked by neuro to rule out other comorbidities before going "nah it's totally just MCAS" and potentially missing something else.
I have brain fog that intermittently affects language. Just had neuropsych eval plus MRI, MRA, various blood tests, etc. Dr thinks it's some combo of my MCAS, POTS, plus I also have idiopathic intracranial hypertension soooo who knows exactly what that combo is doing to my brain.
My cognitive issues have gradually improved, although there are still times when I pretty much lose all expressive language (including written English and ASL).
For me a lot does seem related to blood flow to my brain, as well as CSF outflow via the glymphatic system. I'm throwing in some of the technical terms since this is your field, but if you need more info I can do that once I'm more awake.
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u/Ana_Adnah_111 13h ago
I had really perplexing episodes at a point years ago and while I’m still not officially diagnosed. I’m going to assume that what happened previously was linked to MCAS and the conditions I suspect by now have which is hypermobile EDS and Sjogren’s. It’s terrifying at times the perplexing level of symptoms possible. Docs just say ‘no. Not possible.’ Not out to curse anyone, but imagine if doctors themselves came down with an epidemic of MCAS - WOULD THEY BELIEVE US THEN???
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u/longwander 6h ago
I just switched from ivabradine for my mcas tachycardia to atenolol to also address my adrenalin surges and hyperpots symptoms. My Dr. Approved stacking both, my HR became totally normal with the atenolol on its own.
It's been amazing for me. It did cause some mild mcas reactions the first week when my mcas meds were wearing off, but absolutely worth it. Slight hoarseness and itchy throat, but no hives or fatigue. My brain fog significantly improved and my adrenalin surges/tremors are gone.o can sleep normally and my body is finally relaxed internally. My Garmin metrics look totally normal for the first time ever.
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u/Sairis-Activated 2h ago edited 2h ago
I’ve had a few strangers ask me if I’m high when I was flaring because of how altered I get.
Brain fog, memory issues, aphasia, sense of impending doom, disorientation, disassociation, fatigue are all MCAS stuff. As others have said, what you’re describing sounds pretty typal.
https://www.mastattack.org/2014/10/mcas-neurologic-psychiatric-symptoms/
https://www.mastattack.org/2016/04/neuropsychiatric-features-of-mast-cell-disease-part-1-of-2/
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u/chikitty87 1h ago
I had this kind of stuff too at times. It was too high histamine with too low thiamine. Have you ever tried thiamine? It's flaring so really really really start with as small a dose as possible if you try. But it stopped that stuff entirely for me. I had even forgotten until I read your post. I'm mostly healed and now looking back at all my symptoms like wttff to be honst
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u/chikitty87 1h ago
btw actually the memory stuff is one of my stickiest symptoms so still not perfect, but I can only use microdoses still. It improved a lot though, esp the other craziness.
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u/Ssaaammmyyyy 19h ago
H1 antihistamines (second generation such as Loratadine and Levocetirizine) caused severe problems with short term memory for me - I couldn't remember what I did a few minutes ago (backward in time) and what I wanted to do in a few minutes (forward in time). It was so obvious and so severe that I was thinking of going to a neurologist to evaluate me for a beginning dementia.
This led me to trying a Rosemary extract ("Rosemary is for remembrance", Shakespeare). The water soluble Rosemary extract I am using doesn't have any memory enhancing properties but it almost completely suppresses my headaches after meals, which are my "MCAS" symptom that the antihistamines were suppressing. The Rosemary extract made the H1 antihistamines unnecessary, so when I dropped them the memory problems ceased.
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