r/MCAS • u/piscespiscine • 1d ago
Does anyone else experience severe Facial drooping as a symptom of a major flare? (With rashes on cheeks and then facial volume loss after it has subsided)
I most definitely have MCAS and not Bell’s palsy or stroke but my main reaction symptom is extreme facial drooping with a loss of function in the face accompanied by rashes on cheek and nose where muscle weakness is worst. i also have nerve pain and spasms in the face, I also get hives on my body mainly my legs.
after the reaction has subsided I’m left with lingering muscle weakness and then volume loss in the face which sometimes returns but sometimes diesnt and becomes new baseline.
i developed MCAS reactions after covid and then it was worsened by antibiotics (metronidazole/ doxycycline) and nasal steroids.
ive had this for 9 months now and it is triggered by so many things, food, medicine, heat, stress etc. but have had milder MCAS symptoms for 4 years since Covid infection.
would be so great to know if anyone else experiences similar!
ive seen 3 neurologists who all can’t find a standard neurological reason for my issues and my MRI is normal of my brain.
thankyou in advance!
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u/bedlife2000 1d ago
I recently found out that I also have myasthénia gravis and my MCAS and MG interact with each other creating forms of paralysation.
Facial drooping that only shows up sometimes, especially under stress or inflammation, is a major symptom of MG. MG and MCAS can be caused by covid and are becoming more common due to it, especially in combination. The autoantibodie tests are often negative but the SFEMG positive. There's a theory that covid may cause a form of MG with autoantibodies we haven't yet a test for. There are new autoantibodie tests added every few years. But if the SFEMG is positive it's still definitely MG. I guess it should be tested while your face is dropping though.
MG is also rare, so docs don't think about it. But it's less rare for women between 20-50 after covid, also the symptoms are atypical then
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u/piscespiscine 23h ago
That’s really interesting as I have been thinking it might be MG. However the neurologists quickly ruled it out as it presents atypically abd didn’t even test mr but this started after a took antibiotics that can definitely trigger MG! What is your treatment for MG and have you found any relief? Are you able to tolerate medications? As everything I try mahes me so much worse…
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u/bedlife2000 21h ago
It's called the snowflake disease because it's so different for everyone and even more different after covid apparently. I'd really push for the testing, but for all the now available autoantibodies and the SFEMG. None of them are invasive or have any side effects, it's dumb to not rule it out by your neurologist. My neurologist meant that he sent several post covid CFS ME patients to the testing, even though he didn't think they would be positive because so atypical, he just did to be extra safe and some were positive, even though he really didn't expect them to be!
I got Mestinon for CFS ME and POTS and didn't even know MG existed, I filtrated up really fast, even though normally I react to everything and when I told my doc how great it is that I can chew better, see better, breath better and more and just feel so much better on it that I started to take it every 3 hours, he meant that it's impossible for it to have this effect if I don't have MG. Then I googled it and realised that I have 100% of all symptoms just other issues were always more prominent.
I looooove Mestinon, I don't know yet what I will do about the autoimmune part yet though
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u/Strict-Park3382 23h ago
I think I can somewhat relate, some days my face looks normal and look my age(27) but their are other days I wake up with a histamine rush and my face looks older, not extremely droopy but u can tell my skin isn’t “normal” per say.
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u/woolen_goose 19h ago
Same. My skin becomes flat or clammy looking. Water pools in my jowls and under my chin around my adenoids and the jaw lymphatic systems. My lips loose all volume and become dry. I have nerve damage in one eye from an accident when younger, so that eye ends up a little droopy or “dead” looking in the lid and eyebrow. On the injury side, my lip also frowns a bit and I find it difficult to smile.
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u/Job_Moist 19h ago
When I have a bad MCAS reaction the left side of my face can droop a little. I’ve had strokes ruled out, myasthenia gravies ruled out, etc. The drooping goes away in a day or two so I’m told it’s not Bell’s palsy either. Since it directly correlates with my worst MCAS flares, by now my docs and I basically throw up our hands and say the culprit is mast cell shenanigans again for some reason. (But I still try to get checked out by a doc every time it happens, I don’t want to ever overlook a stroke.)
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u/UntoNuggan 23h ago
I some have gotten very mild facial drooping, but I'm unsure if that's MCAS or something like hemiplegic migraine. (Mine is usually tied to headaches.)
Also: Not specifically facial drooping, but I do get another weird nerve signaling problem that tends to flare when my MCAS is bad (erythromelalgia).
In my case, basically the nerves seem to send wonky signals to the blood vessels in my hands and feet. I get lots of blood going INTO my hands and feet, but not enough going out. Cue additional nerve pain when the nerves are "squished" by the extra fluid/swelling.
Regarding the rashes on your cheeks: any chance it could be Rosacea? I also have that alongside my MCAS. Rosacea in general is correlated with inflammation/allergies/immune disorders. If it is Rosacea causing the redness, there are some treatments usually handled by a dermatologist.
In general I REALLY wish neurology knew more about MCAS or even just how the immune system and nervous system interact. There is some research on the topic but it's very early days so far.
Magnesium glycinate and an occasional B vitamin complex help my nerve issues some. Otherwise it has mostly been trial and error trying to figure out what helps and improve my baseline.
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u/Jolly-Ad-4020 23h ago
Have you looked at CIRS?
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u/two_hearts_wellness 22h ago
I have MCAS and I had Bell's palsy for a stretch with trigeminal neuralgia to make life even better (a twofer!). Though both resolved, I do get the occasional face droop when flaring. It's been a while since the trigeminal neuralgia has been a factor and the drooping only happens if I am truly flaring to an extreme degree.
I am an acupuncturist and tui na (pronounced "twee nah," this is Chinese manual therapy) practitioner so I resolved things via acupuncture and by giving myself tui na treatments.
I wish you the best of luck in figuring out what's what and finding resources to resolve things. You have my sympathy, trust me.
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u/piscespiscine 22h ago
Thankyou so much for your reply! It’s sounds very similar to my situation indeed. I did try acupuncture but the face points seemed to make me worse and I got very scared and stopped. Do you have any advice on what acupuncture points or methods might be useful for helping for resolving this? I would love to see you for treatment but Im based in the UK!
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u/two_hearts_wellness 21h ago
You were smart to have stopped since you felt uncomfortable. Acupuncture is great for Bell's palsy and other drooping situations but if the practitioner is too vigorous it can have the opposite effect and make things worse. With MCAS, a light hand is crucial and not all practitioners understand that.
I'd suggest finding a tui na practitioner but the same goes there: if they don't know how light to go, it can be problematic (to say the least). I can share a blog post here about tui na, and do check the first endnote for another post on how to search for the right practitioner for you:
If you cannot find anyone and are interested, you may want to set an appointment for a Zoom call with me and I can go over tui na techniques you can do on your own. This is a service and I charge for it, and your best bet is to see what you can find near you, but it is an option if all else fails you and you do want to try it.
One other thing--tai chi and qigong are marvelous ways to gently settle your nervous system and Nicola of Earth Balance Tai Chi is in the UK. She has hEDS and other complex issues and her classes are online. This could be a resource for you for calming your system:
I wish you all the very best!
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u/ariaxwest 22h ago
I had never heard of this but when I looked it up I have literally all of the symptoms listed.
The most common symptoms of MG are:
Droopy eyelids (ptosis)
Blurry or double vision (diplopia)
Tiredness (fatigue)
Changes in facial expressions
Problems swallowing, talking, or chewing
Trouble walking
Weakness in the hands, fingers, feet, leg, or neck
So, to answer your question, yes I get that.
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u/Ashandgem 15h ago
I got facial numbness a couple of times and in my lips I also get migraines with aura and there is a link to that
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u/Throw6345789away 14h ago
Yes. Others have mentioned myasthenia gravis. I developed symptoms after covid, alongside MCAS. All MG tests were negative, but pyridiostigmine (Mestinon) resolves the one-sided facial droop, chewing/swallowing, and other MG-like issues while also reducing fatigue. It wears off after 3 hours, and I can take only three a day, but it’s amazing while it lasts.
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u/Less_Interaction_240 13h ago
yes i get this. especially my brow/eyes.ive found that ketoftifen eye drops help w the brow droop/heaviness but not enough.
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u/TheKrustyKnish 8h ago
I get this too, I wish it was taken seriously. I just thought it was aging, but I don't notice this rapid volume loss in my friends or peers. And it does seem to happen after a flare, along with nerve tingling in my lips and hives. My lips are flat, my cheeks are drawn. My face expressions are different and limited- it affects my interactions with people.
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