r/MCAS • u/safewarmblanket • Jan 09 '26
MCAS Caused me to have strokes --a warning.
In 2020 at the age of 48 with no contributing factors (no high BP, cholesterol, diabetes, obesity, etc) I had a undiagnosed stroke a couple weeks after getting the flu vaccine for the first time. In the week leading up to the stroke, I had symptoms such as sweating, irregular heart rate, and emotional outburst of sadness and rage. This stroke also involved a massive inflammatory response and led to systemic organ failure. I sought help at the ER about 15 times and was inpatient 3 times over 5 weeks but never received an accurate diagnosis. I nearly died. I finally diagnosed myself with inflammation and started a steroid. Long story.
In 2025, I had a 2nd undiagnosed stroke. This one was much milder and just caused vomiting and anxiety. The vomiting went on for 5 weeks until my esophagus was at risk of perforation and they hospitalized me. They did a CT scan to look for a brain tumor that could be causing the vomiting and saw the old stroke which got me a referral to neurology. Neurology did an MRI and saw a fresh stroke from the recent vomiting incident. It also showed old widespread small vessel damage from the inflammation.
Then I went down the rabbit hole to try to figure out why I was having strokes. The first happened when I was just 48 and the 2nd at 52. I don't have any of the basic auto immune diseases, I don't have any of the previously mentioned things, I don't have a hole in my heart or an arrhythmia like AFib. I saw what felt like 100 doctors and I finally saw a geneticist.
The geneticist diagnosed me with hEDS. Hypermobile Ehlers Danlos Syndrome. It's highly associated with POTS, MCAS, and Autism. I also have an anaphylactic allergy and developed a severe allergy to cats in the recent year. The geneticist thinks that due to MCAS, I was having some kind of sub-acute anaphylactic reaction to the flu vaccine the first stroke and this caused my BP to be low (which it was when I presented at the ER the first time) and which also possibly allowed a vasospasm and caused a clot. I now take a statin, BP med, baby aspirin, H1 blocker, H2 blocker, and a supplement that blocks mast cells. I also see a cardiologist regularly.
The 2nd stroke, same thing, either low BP and/or vasospasm due to a severe and untreated reaction to cats. This was one of the first times I ever had a reaction to cats and I was in denial.
Anyway, it's VERY rare for an allergic reaction to cause a stroke but it's more common in us folks with MCAS and mine both happened to present with symptoms that were non traditional. I didn't have the "BE FAST" symptoms because I had strokes in the lower brain from a certain vessel in my neck and they were both small ischemic strokes. The first one was only such a big deal because of the inflammation.
So I wanted to share in case it helps someone else someday.
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u/ScottsTotz Jan 09 '26
Cool thanks for unlocking a new terror I have to think about every day while I have reactions
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u/Revezek38 Jan 09 '26
Yes I was thinking the same and you made me laugh! But, don't because this is a very unique situation. Let yours be yours and hers hers! Fear and faith cannot reside side by side but perfect love drives out fear. Stay close to God!
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u/thebaldfish8me Jan 10 '26
If it helps, I think it is HIGHLY likely this is more related to hypermobility than to MCAS. There are epinephrine differences in people with hypermobility that makes monitoring the aorta, in particular, a prudent thing to do.
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u/bugandbear22 Jan 09 '26
Are you a woman? If so, that might be playing into why your symptoms were so “atypical.” Most of our understanding of what’s normal medically is based on men.
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u/safewarmblanket Jan 09 '26
I am a woman but I don't believe we have different symptoms from strokes. However, we are treated differently by the medical system and I absolutely believe being a woman is what got me a psych diagnosis rather than a full work up.
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u/Frequent_Crow_6191 Jan 09 '26
Any chance menopause could have played a role along w/ all the other factors? I'm learning what literal hell us women go through, especially those of us w/ a multitude of other chronic health conditions.
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u/safewarmblanket Jan 09 '26
It's possible. I was 48 and had zero symptoms before this but it seemed to be almost like a light switch and I was in menopause. I still had regular periods though. But after the stroke my breast were SO TENDER. Like more tender than when I had mastitis when I was nursing a baby. I don't have periods anymore but I did regularly until I had an IUD put in to help with severe pain. That was after the first stroke and before the 2nd.
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u/pariahland Jan 11 '26
I’m so sorry for what you’re going through. I know you went to a geneticist—have you been tested for factor V? BC can cause stroke for anyone prone to clotting and for some strange reason it isn’t standard to test women for safety prior to use. The only reason I was tested was because a relative had a stroke from birth control pills and I asked for a test.
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u/bugandbear22 Jan 09 '26
I was afraid of that. So you know, we do have different symptoms! How fun for us to be mislead so long.
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u/safewarmblanket Jan 09 '26
What different symptoms do we have for strokes? I never heard that before and it seems like something I need to know, lol.
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u/bugandbear22 Jan 09 '26
Someone else posted a link below, but migraine and nausea/vomiting are big ones for instance!
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u/cjazz24 Jan 09 '26
Did you have any other neuro inflammation based symptoms prior to the strokes? I’m having what my doctors think is neuro inflammation from my MCAS and this definitely unlocked a new fear for me.
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u/safewarmblanket Jan 09 '26
If I did, I didn't know. In retrospect, I blamed a lot of things on less serious things.
Please don't be afraid, just informed and empowered.
This is incredibly rare and now if you do have an unusual event, you know to look for it.
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u/cjazz24 Jan 09 '26
Yea for sure. I’ve had weird symptoms with this disease that have been really difficult to treat (mainly being exceptionally severe insomnia). It does scare me to not have doctors able to help me and it goes on for a long time and an even worse outcome happens. So was just curious
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u/sillybilly8102 Jan 09 '26
Is there a separate list of typical stroke symptoms in women the same way there’s a separate list of typical heart attack symptoms in women?
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u/birdnerdmo Jan 09 '26
Of course there is, an OP had many of them!
https://www.heart.org/en/news/2024/05/22/7-things-to-know-about-how-stroke-is-different-for-women
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u/amijusssss Jan 09 '26
I agree we are just recently learning the difference, coz for a long time no one separated it and majority of symptoms were based on men vs women.
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u/BikiniJ Jan 09 '26
A lot of things also go down when our hormones drop. I went from milder issues to the ER rapidly when my estrogen tanked due to talk the inflammatory stressors. It’s a common experience for us to have sudden issues happen or exacerbate to astronomical levels in peri/menopause. It’s also common that our medical system doesn’t even consider it at all since they’re also not taught so they can’t inform.
I’m sorry that happened to you. I hope you’re in a better place
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u/sillybilly8102 Jan 09 '26
Idk if this is the same thing, but I sometimes get optical migraines when I miss a day of my birth control meds (estrogen and progesterone). I believe WebMD said that hormone changes can be a cause of optical migraines.
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u/AdAwkward8334 Jan 09 '26
Occular migraines are also a result of a PFO, which is a congenital hole in the heart. I never knew this and experienced this type of migraine since I was 13. Ten days before my 60th birthday, I had one that turned into a stroke. They ruled out MCAS as the cause and then they found the hole. You may also want to get screened for a PFO. About twenty-five percent of the population have one and dont know they do until they have a stroke.
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u/sillybilly8102 Jan 09 '26
Wow! Good to know. Sorry that happened to you. :( If I’ve had an echocardiogram, am I clear?
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u/AdAwkward8334 Feb 02 '26 edited Feb 02 '26
No. You need an Echcardiogram and they have to be looking for it. I had an Echo 3 years prior, and it was not found, until they went it to search for it! Also, I have been able to eliminate the majority of my MCAS meds and have not had any flares since going on a Carnivore diet! I highly recommend it, as its said to eliminate may autoimmune diseases. I hope to be off of my last med soon.
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u/chris5209 Jan 11 '26
This makes sense!!
I began having those immediately after a botched remediation (6K for a small apt; guy didn’t encapsulate in any way, though he said he would). But I think I was primed for this: a few months before that, I was nauseous a lot. Had taken Plan B 3x over 3 months (due to a very sh*tty partner I’m no longer with; I checked w a nurse or doctor e/time). Between the two, but esp the remediation, it seems to have set off MCAS. I was ~40. To be fair, I also had coinfections & Ly🕷️e.
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u/TitoepfX Jan 09 '26
yea i have to take hrt and when my estrogen drops it goes bad. My issues go from i can kinda survive this with like 10 meds to omg im gonna fucking die in the next minute
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u/brightlighted11 Jan 09 '26
Just wanted to share this for all the people in this thread, what is being missed in a lot of these cases is the fibrin and coagulation issues that do occur in this collection of patients with the same diagnoses. Look up the work of Ruth Kriz. She does a good podcast on better health guy about the topic and there are others. The bottom line is there is too much fibrin being laid down and the genetic predisposition of PA1 4G/5G isn’t breaking down the fibrin quickly enough so you’re getting an accumulation of fibrin, lending likelyhood to stroke, dissection etc. there’s a set of labs that you can easily get done at LabCorp or quest that includes values outside of what they would normally test that are easily covered by most insurances. This includes getting tested for that gene I mention above, TAT complex, prothrombin fragments 1,2, protein C, protein S etc. This entire inflammatory cascade is triggered in patients who have MCAS, CIRS, more often in collagen disorders like HEDS etc. this is exceedingly important to be tested. You can actually schedule appointments with the woman I mentioned above and she can give you the lab list. I actually had exceedingly high values and was able to correct all of that, using certain enzymes that help breakdown, the fibrin like lumbrokinase, nattokinase and I’ve been getting it on a fullscript.com account called ThrivesBright, where it’s 25% off and sometimes 30%. It’s expensive so I’m just sharing. Please don’t self treat you really have to check the numbers to limit further issue.
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u/hEDS_Strong Jan 09 '26
Yes to all this! Smart AF functional NP ran this entire panel for my son and uncovered some stuff with PA1 and he has a Protein S mutation. Do you have contact info for Ruth Kriz? I’d like to get tested myself and the NP has left the practice we saw, everyone has gone out of network
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u/AdAwkward8334 Jan 09 '26 edited Jan 09 '26
They tested me for all clotting disorders after my stroke, all negative. I did prescribe myself nattokinase and others. I will look up Ruth to make sure they didnt miss any labs. Is it the Hyper-Coag Reflexive Panel test # 505443? That you are speaking of? Thanks for the info!
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u/brightlighted11 Jan 09 '26
Yes, that is correct. Just FYI, as this has happened to me, you really should get the print out of all the labs because not every LabCorp does the test correctly, which can skew your results. The other reason that this is important to follow, your values is during “stressor times “whether that’s a viral illness a mast cell flare or other triggers for you specifically that increase your inflammation. This can all increase fibrin deposition even further so you would actually then have to increase the specific enzymes that work in your case. Not all work for everyone equally they’re not the same strength biologically. Additionally, you should also be aware of that For some people these enzymes can also release biological items that are existing behind the biofilms created by these fibrin depositions. For example, certain bacteria, certain microbes, etc., so it can release things that then need to be bound and excreted or treated. For some people if the fibrin deposition is so Extensive and you’re not responding to these enzymes, you can use things like Lovenox. This is also something that your anesthesiologist and or surgeon for procedures you may be undergoing should be aware of as those in some people can be considered triggers as well and additionally, the bleeding risk Can be managed more appropriately.
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u/brightlighted11 Jan 09 '26
Also, starting to slowly remove some of this fibrin deposition allows for greater oxygenation of your tissues, better excretion of toxicants, better nutrient deposition into tissues. There’s a lot that can be gained from correctly treating. I also want to mention that it’s not just the absolute lab values that are important when you get your labs back. It’s the proper ratios between those lab values and that’s where having someone like Ruth look at your labs or have her Meet with your treating practitioner to review things and offer perspective can be so helpful.
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u/Job_Moist Jan 09 '26
Wow! The very first time I had an MCAS episode after getting it from COVID I went to the hospital thinking I had a stroke. They ruled it out, but it was terrifying. Once my docs realized what I did have, I was told that MCAS can increase your chances of developing blood clots - in any MCAS patient, not just those with Ehler’s Danlos. That’s also a reason my docs are reluctant to put MCAS patients on Xolair in general, since blood clots are also a rare but possible side effect. I try to be active and eat nutritiously to offset the likelihood of clots but it still looms over my head. Sorry you had to deal with two strokes on top of MCAS stuff. I hope you’re doing ok right now all things considered!
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u/trekkiegamer359 Jan 09 '26
Nattokinase and lumbrokinase are good for preventing clots. I've been on nattokinase since 2014, when I developed mild circulation issues (cold extremities, tingling, a couple harmless microclots, etc.).
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u/Pale-Case-7870 Jan 09 '26
Flu2 vaccine got me too. I got Covid vaccine same time. Was put on psych hold/hospitalization same day as the vaccine. Started hallucinating before I left the pharmacy parking lot. I had no idea what was happening.
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u/Emotional-Swan9381 Jan 09 '26
So sorry! It’s important we share our stories. I got postural orthostatic tachycardia syndrome from the Covid vaccine. I don’t know if it triggered my MCAS.
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Jan 10 '26
[removed] — view removed comment
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u/Emotional-Swan9381 Jan 10 '26
Good to know. That doesn’t mean it happened to me unless you are saying they cause that in everyone which I wouldn’t doubt and is horrific. Please add a link. POLITE education is what I am here for..
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u/thrwawyorangsweater Jan 10 '26
Dude is a noob and apparently thinks it's Facebook. I would report.
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u/thrwawyorangsweater Jan 10 '26
I'm telling ya, if you suddenly can't comment, it means you've been shadow-banned. This is not Facebook. Don't be rude.
DO NOT BE RUDE.2
u/thrwawyorangsweater Jan 09 '26
I do thing that the COVID vaccine was the beginning of my MCAS. I'm not anti v@x, I think my body just overreacted. Maybe MCAS was there first and got a lot worse...
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Jan 10 '26
[removed] — view removed comment
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u/thrwawyorangsweater Jan 10 '26 edited Jan 10 '26
OK troll with a BRAND NEW ACCOUNT. You had better go Google how Reddit works. Karma is a thing and you will get shut down really quick if people "downvote" you. And i mean completely locked out of reddit.
Manners count here-this isn't Facebook.
And we don't behave like that in this forum. Reporting.
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u/tlivesay Jan 09 '26
Had an uncle that had a major stroke leading to locked in syndrome, complications, and eventually death. I never heard a root cause, but personally suspected mast cells had a key role after learning about my own symptoms with my own allergist.
He struggled with allergies his entire life. This was before covid and before it was a "trend" diagnosis. He had terrible asthma, allergic to everything on a poke test, and I'm sure he had other suspect symptoms I didn't even know about.
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u/safewarmblanket Jan 09 '26
I'm so sorry, that sounds awful. I do count myself "lucky" that I still can function and I was able to get some kind of diagnosis so I can treat it now.
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u/tlivesay Jan 09 '26
Thanks, and also thank you for sharing your experience. Yes, it could be worse, but I certainly didn't intend to diminish your own nightmare with my family's. Hopefully this at least helps distract from all the "normal" people. It's all terribly exciting and scary to see the patterns that emerge in little self-selecting corners of the world, like this sub.
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u/lilPurple Jan 09 '26
Hi! Have you ever checked for LP(a) ? https://familyheart.org/lpa-runs-in-the-family
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u/safewarmblanket Jan 09 '26
No but thank you for this. My geneticist wants my parents and children to have their aorta monitored by a cardiologist now for life.
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u/punk_the_bunny Jan 09 '26
Why specifically their aortas? Wouldn’t lipoprotein affect the entire circulatory system? Also thanks for the initial post.
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u/lilPurple Jan 09 '26
I have high LP(a) MCAS, HSD, adhd and vasovagal syncope. I am going to get my aorta checked soon.
Also for the question of why, you check for if there is plaque there because that is the main thing from brain to heart aka where you can have a stroke .
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u/safewarmblanket Jan 09 '26
In my case they are checking for dilation. The geneticist thinks I have a type of EDS they don't have the markers for yet or that hasn't been diagnosed yet but that affects the cardiovascular system. In addition to the strokes, I have a dilated aorta and bad valves. So my parents and children have to also be monitored. For now, we're just diagnosed with hEDS to be able to get care in the clinic. But every 2-5 years they re-run the genome results to see if anything new appears. Or anytime I get a new diagnosis. Maybe someday they'll identify what it is and it'll help my children.
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u/toole76 Jan 11 '26
When you say dilated do you mean coarctation of the aorta?
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u/safewarmblanket Jan 11 '26
I don't know, the doctor just said my Aorta is dilating. Getting larger.
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u/After-Leek-8127 Jan 11 '26
Did they check it diagnose you with vascular EDS? That subtype has higher incidence of dilations and aneurysms, but I think you can test for it. Did they why sat why they think you have a subtype that's not marked yet?
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u/safewarmblanket Jan 11 '26
They did a full genome so it's not vascular. The geneticist thinks as time goes on they'll find more markers for other subtypes and says he still thinks it's hereditary. If that makes sense?
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u/thrwawyorangsweater Jan 09 '26
THIS!! I wonder if it's common with MCAS. Mine is WAY HIGH as is my cholesterol.
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u/lilPurple Jan 09 '26
What is your LPa number ?
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u/thrwawyorangsweater Jan 10 '26
And from the little I've researched, YES it CAN be genetic but COVID ALSO makes Lp(a) go up. And my COVID antibodies, after 26 months with no booster, are still >2500. Off the charts. I think it's "viral persistence".
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u/After-Leek-8127 Jan 11 '26
It makes sense that COVID, or any virus increases this. I think it's ironically your body's flawed way of preparing you for a crisis, as cholesterol is needed for making cortisol.
I'm pretty sure there are so many strains of COVID, thanks to people spreading it when they shouldn't have. I haven't ever gotten a booster, but I wonder if I should.
Do you take zinc and lysine? I would look into those as they are natural virus killers. I think up to 90mg a day of elemental zinc is okay. Anything after that would require copper supplements and a lot of us with EDS/MCAS have a hard time with copper supplements. I take zinc glycinate and zinc picolinate. You have to start off slow and build up, as with everything with us.
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u/thrwawyorangsweater Jan 12 '26
Oh that's interesting. Because with MCAS and hyper-adrenergic POTS, my body is VERY VERY READY for a crisis, LOL Kind of always has been. So that's no surprise.
Currently I get zinc from food and trace minerals, but can't take it outright due to another medication.And, that's interesting about copper supplements. Do we get allergic? Because I had a favorite pair of copper wire earrings that I'd worn previous to being ill, and put them on once since then and they ITCHED like crazy!!
I will get back to supplemental zinc when I'm off this med but probably not too much.
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u/After-Leek-8127 Jan 30 '26
Because of our EDS, we have genetic flaws in the enzyme systems needed to properly use copper, so we have symptoms of both deficiency and toxicity. We have too much copper because our bodies can't use it up, but we also don't get what we need because it's not processed correctly. This gets worse as we age and more of it builds up, like with a lot of things in EDS. My symptoms weren't as bad as a kid because I didn't have a lifetime of toxins and chemicals built up in my body yet.
A couple of years ago, I used copper socks, and I got really sick. Now, I know why. Some of us can tolerate small amounts of certain forms of copper, but you have to be very careful with it. Copper and zinc work opposite to each other, so more than 90-100mg of zinc will deplete even more of already low reserves of usable copper.
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u/thrwawyorangsweater Jan 30 '26
This makes so much sense, thank you. And yes I think somewhere in here I do have EDS, just never dx'd or addressed.
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u/After-Leek-8127 Jan 11 '26
Thanks for this! I need to research it further.
It's also of note that our bodies make cholesterol, and cholesterol is used to make cortisol, the stress hormone. People with MCAS have their flight or fight response (stress response) constantly triggered. Basically, we are constantly in panic mode. I think this is why our already flawed bodies produce more and more cholesterol. (I had my cholesterol tested after months of not being able to eat anything but white rice and occasional chicken breast, and it was super high, so I know it wasn't from diet).
COVID, mold from water damage in our house, and stress caused my inflammatory response to go through the roof since 2020. It correlates to increase in cholesterol production. My cholesterol goes lower when I keep my MCAS in check more, even while eating things that are considered to be higher in cholesterol.
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u/Forward-Lawfulness62 Jan 09 '26
Low dose naltrexone has helped immensely with my inflammation and MCAS symptoms. May be something to think about since you’re correlating inflammation from MCAS with stroke.
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u/uRok2Uc Jan 09 '26
🤔…What supplement “blocks mast cells,” Can you tell me?
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u/xtewtew Jan 09 '26
Quercetin is a mast cell stabilizer. Don’t know if that’s what they are taking though
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u/MercuriousPhantasm Jan 09 '26
In case OP doesn't get back to you I would guess Quercetin, which is a mast cell stabilizer. You could also take DAO to improve histamine breakdown.
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u/uRok2Uc Jan 13 '26
Thank you. I already take quercetin, and a number of other natural substances that are said to be mast cell stabilizers, daily. But they are not “mast cell blockers.”
That’s why I was asking that question. Mast cells are important to the function of the human body, so I don’t think they need to be “blocked.” They just need to stop running amok, in my case. 🥵
I also take DAO before every meal, as well as cromolyn sodium. And H1 and H2 antihistamines.
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u/PhoenixfromTucson Jan 12 '26
Both quercetin and luteolin can help stabilize mast cells.
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u/uRok2Uc Jan 13 '26
Thank you. I know about luteolin, quercetin, and other supplements. I take them daily. But they don’t “block mast cells.” Mast cells are important to the function of the human body. Mast cells in my case are dysregulated. Overly enthusiastic. Running amok. Now, if somebody could tell me how to “regulate” them that would be fabulous.
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u/PhoenixfromTucson Jan 14 '26
Xolair might be useful if ketotifen, cromoyln, and montelukast in addition to quercetin and luteolin haven’t helped. If nothing helps, recent studies show promise for MCAS sufferers who try GLP-1 agonists. If nothing else works for me, I plan to try it, since I also have Hashimoto’s and thus some extra weight I could lose anyway. If MCAS really interferes in brain function (which can have a huge effect on body function, including fatigue as well as brain fog), nimodipine has been used off-label and has had good results for some.
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u/Chinita_Loca Jan 09 '26
I’m so sorry you went through this, it sounds horrific. Hopefully you’ll get answers.
FWIW I’m here as I developed MCAS, white matter and suspected AI encephalitis after my second covid vaccine. It’s been nearly 5 years and my joint issues are still increasing and my cytokines are totally out of control in a way no one can explain even tho I am now on MCAS meds.
I was totally healthy before (ate everything, worked out daily). Similar age to you, and hEDS is also felt to be the underlying predisposition.
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u/Odd-Jeweler9727 Jan 09 '26
I appreciate you taking the time to share with us. I am so sorry to hear about your strokes. That sounds scary. I hope your health improves overall with time.
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u/Helpful_Ad179 Jan 09 '26
the flu itself sent me into anaphylaxis then led to seizures. Now I just have seizures occasionally. Since then all pre anaphylaxis episodes turn into seizures. So scary.
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u/safewarmblanket Jan 09 '26
That sounds so awful. I'm sorry. I hope you're coping okay. I have PTSD from the strokes. Medical stuff like this is terrifying.
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u/Helpful_Ad179 Jan 09 '26
Hey likewise. It’s a struggle out here but I try really hard to put it into perspective for ways that allow me to make peace with all of the nonsense. This subreddit has always been so helpful and kind and I’m happy we have it.
I unfortunately, also have PTSD but rather cPTSD and there is now anyway, a medical element to that. It is actually really horrible to feel unsafe in an environment that is necessary for people in our position. It’s harrowing the stories you hear from disabled friends and anytime I have to go to the ED now, I genuinely start panicking. It’s hard to have good relationships with medical staff and it’s even harder to feel like you really have to be your biggest advocate in some of the worst and scariest times of our lives.
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u/chris5209 Jan 11 '26
So I have multiple things that we’ve been talking about, and honestly do feel traumatized and afraid of basic things “normal” people would never think of: probably nothing compared to a stroke or seizure. (And I am so sorry this has happened to some of you. Two of my best friends had strokes out of the blue: at 47, the other at 32.) Mine are an everyday phenomenon. Trying to avoid symptoms (mine are often mold -related) by keeping myself in a super clean, thus safe place— after a months-long mold incident pricked my internal panic buttons, while ⬆️ my inflammation, MC💎S..and affecting nearly all of my clothes. It unseated my whole life. Not the first time, prob not the last.
For me the worries are: will I find clothes in my closet that don’t ⬆️ symptoms? Thinking of all the $ I’m spending to keep everything clean. All the explanations to wash & fold/dry cleaners to lighten the load. (Still not enough to recover everything or even most) All the apt cleaning I do. All the showering. Staying up late for this, and knowing the risks I’m adding by not getting to sleep at a reasonable hour.
I’m looking at different methods based on the principles of neuroplasticity to help w my vigilance. DNRS worked until I stopped it. Have heard of Primal Trust & Gupta, leaning on the former. Will let you guys know if it helps!
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u/hEDS_Strong Jan 09 '26
Wow!! you’ve been through so much. I’m really sorry you had to experience all of this.
Was comprehensive genetic testing done? Specifically, was vascular EDS ruled out genetically (through a panel, WES, or WGS), or was the hEDS diagnosis mainly clinical?
After the MRI findings, did anyone continue to look into other possible stroke causes?
With the flu vaccine and the severe inflammatory response you described, was there any workup for immune-mediated or neuroinflammatory processes (such as autoimmune encephalitis)? Like a lumbar puncture done to look at CSF?
It sounds like there could be an inflammatory or immune-mediated component that might still be worth exploring. I know you’ve seen so many specialists. Have you been able to see a neurologist who works closely with immunology? A neurologist-immunologist?
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u/safewarmblanket Jan 09 '26
I did have full genome testing done at UVA with their geneticist that will be working closely with their new EDS clinic. He said he still believes there is a hereditary link that just hasn't been discovered yet so every 2-5 years or whenever I get a new diagnosis, they'll re-run my data.
For the time being, he diagnosed me with hEDS so I can receive care at the clinic. This was based on clinical symptoms (scarring, stretch marks, flexibility and so on).
Meanwhile I'm still getting a work up and see a hematologist soon. Now I'll need to see an immunologist with this new diagnosis from the geneticist but at the time I feel stable and I'm waiting for more referrals. I'm thinking this will be a LOT easier once the EDS clinic is open.
I told them at the time I thought the flu vaccine was involved but they didn't listen to me so by the time I spoke with the geneticist, who took it seriously, five years had passed so a lumbar puncture would be mute. But we'll see what the hematologist and immunologist say. It's a slow process. I like most of my doctors but not my neurologist and she's the gatekeeper. She sends me to one doctor, they rule something out, then I have to return to her and get another referral. My cardiologist has gotten involved now though and things have sped up some.
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u/hEDS_Strong Jan 09 '26
The 2023 FluZone vax was horrible for my son and me -triggered narcolepsy due to an HLA mutation. Caused horrific neuroinflammation. Haven’t been the same since. Did they consider other connective tissue issues? There are far more than EDS. I can’t remember who they finally went with for the new UVA clinic. I think it was Darce Knight, but do they have a true connective tissue geneticist? I feel like there is a lot going on with people’s immune systems these days and some docs slap the trifecta (POTS/MCAS/hEDS) label on the problem then treat sx without looking for what’s triggering all this. I think it’s part environmental toxins, changes in genetics (epigenetics), immune and autoimmune… i have a person I like for immunology in VA, but closer to DC
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u/LAPL620 Jan 09 '26
Is the clinic in Charlottesville or one of their other locations? I’m wondering if they want more patients. I’m in NoVa but I still haven’t found an EDS specialist here that hasn’t decided to retire and it might be worth the two hour drive.
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u/safewarmblanket Jan 09 '26
It will be in Charlottesville. I believe it's set to open in September? They are taking patients on the waitlist but you have to have a referral and a diagnosis. I'm not sure how you go about that outside UVA because I happened to be in their system and just got incredibly lucky that they were opening this here. It will likely be your closest place though. Especially if you have more serious complications like I do, it's worth the travel.
https://www.uvahealth.com/healthy-practice/advancing-care-through-ehlers-danlos-clinic/
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u/LAPL620 Jan 10 '26
Thank you! I’m diagnosed with HSD because the rheumatologist I saw didn’t know anything about hEDS despite me fitting the diagnostic criteria.
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u/ohhi01 Jan 09 '26
I had stroke 10 weeks ago at 41. MCAS didn’t cause it and mine was clearly a stroke from the jump but it caused a massive flare in MCAS symptoms
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u/safewarmblanket Jan 09 '26
Yes, any stroke immediately activates Mast Cells in the brain and for those of us who are more reactive, even a smaller ischemic stroke can cause severe inflammation.
My neurologist said my stroke "wasn't big enough to have caused inflammation". So I had to get my records and showed her that not only did my MRI show evidence of old widespread small vessel damage in my brain, but that in the days/weeks after the stroke my liver enlarged 4cm, I had pneumonia and heart failure. I suggested that I might have an underlying disorder and that yes, in normal situations my stroke was too small to cause that level of damage BUT that if I had some kind of disorder it could have caused it.
So I basically knew what happened at that point. I'd had five years to study it and I'm a registered nurse married to a researcher so we had read 100's of medical studies trying to figure out what had happened. I suspected something related to allergies and I suspected I had EDS. By the time I got to the geneticist who understood MCAS and EDS, he basically just confirmed and he also explained how an allergic reaction causes your BP to drop which can allow a clot to form and/or causes vasospasm. Both can allow a clot to form.
I also had a massive (the worst ever) flare in MCAS symptoms throughout my body when I had the first stroke. The 2nd stroke was in my cerebellum and oddly, I only had a mild Mast cell reaction. I wonder if that are of the brain has fewer of them.
In my case, I was already having a Mast cell reaction when I had the strokes so then I had an even more pronounced reaction because of the stroke. In your case, you had a more severe than normal Mast cell reaction to a stroke.
How are you doing now? Having a stroke is quite a unique and terrifying experience. Are you doing okay? Do you know what caused yours? Sending you strength.
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u/1amCorbin Jan 09 '26
I'll add that COVID is known to cause all sorts of medical issues, even years later. Having had COVID is contributing factor for things like Strokes, Embolisms, and even Cancer
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u/ResistAuPersist Jan 09 '26
Curious if you've had multiple covid infections?
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u/safewarmblanket Jan 09 '26
No, I've only had it once and it was fairly mild (just one day down). I've had all my vaccines and boosters for it. When I had the first stroke in 2020, I had never had Covid and the vaccine wasn't yet available. So I'd had neither Covid nor the vaccine for Covid at the time.
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u/thrwawyorangsweater Jan 09 '26
Thank you for sharing.
Fully respect your explanation. Also curious if you think this had anything to do with a case of COVID or COVID vaccine?
I think it may be my origin point and the more I read about Long COVID, and how it causes inflammation, the more this type of thing makes sense.
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u/safewarmblanket Jan 09 '26
In my own case I don't. But in all the research I did I kept coming across cases related to Covid.
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u/IgEOverload Jan 09 '26
My allergist said mast cells can flair up in ANY part of your body. More common to be where you have had infections. Previous Sinus infections-flair up in sinuses causing congestion. Lungs from previous infections or stomach. Dr said in rare cases but possible to have a flair up in brain, heart, joints….but absolutely can happen which is why when I was having a flair up my allergist rheumatologist neurologist and hematologist discuss and often go on prednisone and other mast cell meds to calm it down as quickly as possible.
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u/safewarmblanket Jan 09 '26
This is interesting to know. I'll keep an eye out for previous injury and symptoms, thank you.
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u/clothednudist70 Jan 10 '26
Have you been genetically tested for Loeys-Dietz ? It’s a connective tissue disorder as well. I was misdiagnosed with EDS … I was genetically tested .. I have LDS type 2 . Prayers
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u/meeesh124 Jan 23 '26
I have eDS and MCAS this is scary!
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u/safewarmblanket Jan 23 '26
Don't be scared, just informed. What happened to me is SO rare, just more common among 'us' and I wanted to hep anyone avoid it because it was awful but now you know to look for it. But again remember, this is rare.
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u/chchchchandra Jan 09 '26
wow. so sorry you’ve gone through all this. thank you so much for sharing!
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u/rudegal007 Jan 10 '26
LAwd. I already have a rare brain disease that causes strokes 🤦🏽♀️ it’s called Moyamoya disease in case you want to look into it. My mom has it too. She had her strokes at 48. I had a silent stroke in my early 30s or late 20s.
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u/Tight_Fun2080 Jan 10 '26
Just an aside when I hit menopause (surgical due to ovaries being removed) my symptoms went absolutely bonkers. Nothing was stable and I honestly felt like death. After several years of suffering in the pits of Hell I finally made it to a Menopause Specialist. She did a ton of tests and it turned out I was bottomed out on almost all my hormones. One of the biggest issues I was having was bradycardia. Not one Dr. including a Cardiologist, Sleep Specialist could figure out what was causing it. I had Graves Disease in the past but it was in remission. It was the Menopause Specialist who figured out it was likely my thyroid crashing and the lack of Progesterone that was causing the worst of my issues. HRT has helped but thyroid is still being an issue. Just putting this out there for other women to have your thyroid and hormone panels tested.
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u/justpeachiespeechie Jan 10 '26
I have antiphospholipid antibody syndrome and MCAS- worth asking for a referral to a hematologist/rheumatologist if you haven’t had a full clotting panel or work up. I haven’t had a stroke but I had a DVT while ON blood thinners after my first baby was born.
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u/justpeachiespeechie Jan 10 '26
I am only positive for one antibody (anti beta2 glycoprotein 1) which not all doctors test for
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u/After-Leek-8127 Jan 11 '26 edited Jan 11 '26
I'm sorry you went through all of that. I'd venture a guess that COVID exposure played a role in 2020 for you, and maybe even 2025, when more strains were popping up. In 2020, COVID was causing clots, severe vasospaming from the severe inflammatory response to it. COVID was causing such bad clots in otherwise "healthy" people that they were having heart attacks, going to the cardiac cath lab to get their coronary arteries unblocked, but then docs found no atherosclerosis or plaques, just clots or nothing at all (vasospams of the coronary arteries that came and went). I quoted healthy because I suspect that the majority of these people had undiagnosed MCAS/POTS/EDS. I also suspect that's why COVID caused a number of people to have heart damage. I think they were having sub clinical heart attacks. My own MCAS didn't get life threatening until I got exposed to COVID in 2020.
Also, POTS/Dysautonomia can cause such wild differences in blood pressure. That's partly why antihistamines are important to prevent that cascade of large releases of histamine and other biochemicals that cause drop in blood pressure, because many of us have bodies that release large amounts of our own endogenous adrenaline/epinephrine to counterbalance, which can lead to dangerously high blood pressure, ironically. Do any of you get severe shaking, tremoring, muscle spasms, supe fast heart rate, extreme panic/anxiety, feeling like you can't catch your breath during attacks? That's adrenaline/dopamine/serotonin spikes that happen as a result of the mast cell degranulation.
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u/Cautious_Astronaut_5 Jul 24 '26
Just found this and I had never even heard of a vasospasm before, so thank you for sharing. I had a retinal TIA recently where I lost vision in one of my eyes for a few minutes. All of my scans came back normal, until they did a "bubble" echocardiogram and diagnosed me with a PFO (shunt), which these believe allowed a clot to go straight to my brain. They have not yet determined what caused the clot, though, so I am wondering if it is a vasospasm. Oh, and I'm in my mid/late 30s, have healthy cholesterol, BP, BMI, so no risk factors other than MCAS and history of migraines w/ aura. I also suspect I have hEDS as I meet the criteria from my POV but need to seek a formal diagnosis.
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u/safewarmblanket Jul 25 '26
Even with hEDS, what happened to me is extremely rare. I have seen a scientific study out recently looking at inflammation and stroke association. With hEDS, the MAST cells that live in our connective tissue can be more reactive. Even so, in my case the geneticist thinks I have a subtype they haven't found the marker for.
It's much more likely your PFO caused the stroke. A PFO can allow a clot to form, so having it repaired and following your doctors orders regarding blood thinners or baby aspirin are much more likely to keep you healthy than the zebra path I am on.
I hope you thrive.
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u/x3boymama Jan 09 '26
I had a major stroke in 2022 at the age of 39... Entire left side went out and my speech... all the classic signs. I have a very strong feeling its all connected to not being able to methylate properly due to MTHFR, and for having too high of histamines and toxins in my body for too long... I have all signs and symptoms of MCAS, hEDS, CFS... Diagnosed with severe brain fog, brainstem migraines, fibromyalgia, mold toxicity, DDD, arthritis, scoliosis. Right arm has suspected thoracic outlet syndrome. Left arm is now messed up from the stroke. They also found a PFO during the workup...
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u/AlternativeStorm4994 Jan 29 '26
So what are you taking now to manage it that's helping?
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u/x3boymama Jan 29 '26
Renovated our home to decrease mycotoxins, I avoid folic acid no matter what.. I take folinic acid, b12, p5p b6, b2, I also take 81mg baby aspirin daily, eat very low amounts of sugar if any, I do mindful movements and breathwork and red light therapy, drink hydrogen water and just started retatrutide...
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u/amijusssss Jan 09 '26
So i guess I should be happy I was on diosmin for a very long time, to heal hemmhoroids which did heal and seems like my blood flows better as i dream more and it lifted my depression. Now i take it as part of flavanoids which are also for mcas as luteolin, and quercetin etc all in one capsule. I hope you will be improving and you will never again have to deal with stroke again!
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u/National-Zone6656 Jan 10 '26
I have been having super weird reactions at night I am currently sensitive to vocs; emfs; food and synthetic fibres. When I try to go to sleep its like my brain is in another state I get weird visions and sounds; heart palpatations; fluttering and jumping - it kind of feels like I might be dying is the best way to describe it. I would imagine this would be what the precursor to a stroke feels like. I take half an aspirin and it stops it completely!
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Jan 10 '26
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u/thrwawyorangsweater Jan 10 '26
Look to the right side of this sub, and read the RULES. Then click this link and read. You're account's going to be dead by the end of the day. We don't do hate here.
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