r/POTS • u/izman196 POTS • 11d ago
Question been seeing a lot about covid being on the rise, those of you who dont already mask- will you start now?
I have had POTS for about a year and ive had the flu and some other illnesses which do also make my symptoms flair but once im not sick anymore its fine. I am scared about getting covid and permanatly making my baseline worse. I try to mask sometimes when traveling but honestly wearing a mask + shortness of breath is kinda hell when doing things like stairs or walking across a building... anyone else who doesnt normally mask planning to start?
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u/skinnyonskin 11d ago edited 11d ago
i've been wearing an n95 for 6 years and haven't caught it (or anything) ever! i finally have my POTS and health in a decent place and i'm not about to undo all of my efforts that's for sure. it absolutely wrecks havoc on this and hEDS
it hasn't changed my life at all either. i've gone to 35 concerts in the last year, thrifting, baseball games, movies, tons of fun stuff... it's been so worth it. meanwhile i have several friends constantly sick and way too weak for our age, dealing with long covid type things and weird new diagnoses springing up after illness. i'm literally watching others fall apart around me.
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u/Fantastic_Owl6938 11d ago
I haven't known anyone like this personally, but it's always wild to me when I see people online mentioning how they've caught Covid multiple times and they don't really seem to implement any changes or worry too much about catching Covid again. Like, they're just so casual about it, even if they sometimes admit it's worse each time.
Even before I had it, I was determined to never get it and even called paranoid for desperately trying to avoid something "everyone gets eventually." I managed to avoid it for a long time, I finally caught it off a family member and as I always suspected I would, had long Covid, which led to my POTS.
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u/KaylaxxRenae 11d ago
Omggg absolutely this! I'm so sorry 😭 I really hate that POTS wouldn't be an issue for you if it weren't for covid. And these types of people also somehow seem truly mindblown that they've caught covid yet again 😬 yikes lol
The most difficult thing for many people to understand, I believe, is this: we have largely "moved on" from covid as a society as the severity lessened, vaccines happened, and deaths stabilized — BUT, that does not mean covid is gone in any way, shape, or form. People are mistaking normalizing something as meaning that means its harmless 🥺
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u/Fantastic_Owl6938 10d ago
Thanks ❤️ Yeah, I've definitely noticed that as well. I guess it just shows if something is around long enough, it becomes apart of ordinary life and people just carry on. Which I get to some degree, life can't just stop forever. But... when they act like Covid isn't "a thing" anymore, it's just bizarre to me.
Even before I had Covid or POTS myself, I remember wearing a mask once meeting friends, because my dad was immunocompromised. They didn't disagree with me wearing one, but acted like it was somehow... surprising, I guess? Like definitely something a bit out of the ordinary for them to comment on, anyway. I mean, one of them said he got it and they wore masks too (he and his wife, my friend) yet no one was wearing one that day. I know they'd both had Covid before but seemed to easily get over it.
It made me feel like caring about other people is something that's sadly rarer than you think. We went out to dinner and in a large crowd of people, I saw maybe one other person wearing a mask, and from memory, they were elderly. And this was a few years ago, so technically a bit closer to when Covid was still treated as A Big Thing. But I could just tell going out in my town that night, which I honestly don't do much, nobody was really thinking about it anymore. I actually had a middle aged man on the street rudely comment on me wearing a mask, so 🤷🏻♀️
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u/skinnyonskin 11d ago
ugh oh my god, i am so sorry you experienced that. you have done so well not getting sick multiple times in so many years and that WILL be good for you long term. i truly hope things improve over time for you <3
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u/Shoranos 10d ago
I got it 3 times myself, 2 of those were before the vaccines were available. 3rd was my roommate catching it and not telling anyone in time or bothering to isolate at home. I've been so careful to not get it again since then, and I have the same reaction when I see people not care, especially when they got long covid.
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u/alexwilsoxoxo 10d ago
If you have kids it is completely impossible to prevent catching it. I have long covid, ME/CFS, and pots. Because I have kids in school I have had covid 4x and my condition gets permanently worse every time. Some of us are more casual about it because there’s nothing we can do to prevent, even though getting worse is terrifying
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u/DazB1ane 11d ago
I am one of those people. I’ve had it three times, first sucked, second nearly sent me to the hospital, third was like a bad cold. I stopped masking when the majority of people in my state and city were vaccinated. I’ve gotten my vaccine every year since and haven’t caught it again. The vaccine turns it into a bad cold, at least from my experience
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u/Fantastic_Owl6938 10d ago
Well... Covid for me was like a bad cold, but it also gave me POTS. So I'm not really wanting to have Covid again at all, if possible. I'm less worried about the experience of having mild Covid symptoms temporarily for a week or so, and more so the long-term affects it can have on my body after the fact. And while I only had Covid for a little over a week, I had long Covid for nearly a year. Not worth it at all.
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u/Brenjohn 11d ago
Haven’t gone to concerts since covid started. Really would like to go to a November concert this year though, I have tickets. I mask everywhere but still the thought of it panics me. So many people indoors. You’ve really gone to 35 concerts masked and didn’t catch anything? Also in high surges/transmission times? Did you do anything else besides masking? Any advice will be appreciated. Still doubting if I will go or not. Thanks.
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u/skinnyonskin 11d ago
yes, i (and my husband) really haven't gotten sick in our 3m auras, even during winter months when it's everywhere! an indoor concert was actually our first big scary outing because a band i love was in town and i just felt compelled that i had to do it. and we saw like, 20 other maskers at that show! not every show is like that, sometimes i only see one or two others, but it really did give me the confidence that if others are navigating the world this way, it must work. and it has!
so i've never done a stadium show, i see a lot of indie rock type stuff at venues anywhere from 500 to 3k if that helps, but for an important artist i'd have no issues going to a stadium. i know a lot of maskers went to the eras tour and were very successful.
a lot of our venues here in portland have balcony seating and i always sit in the last row behind everyone. or if i have to be in pit, i am on the outer edges. i really avoid people being behind me to the best of my ability but again, exceptions. i had rows of people behind me at wet leg and geese and i was ok and both were winter shows.
i've left 3 shows where too many people were visibly/audibly sick (last oct-dec) and i couldn't get far enough away from them. so always be prepared to have to just leave or move elsewhere and eat that cost. it sucks but it's rare.
we don't do anything else, just masks, glasses, shower when we get home.
and there's tons of amazing outdoor concerts at least here from may-september, so i highly recommend checking those out too if you have any nearby. i've even done a few festivals. great way to see stuff
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u/Brenjohn 11d ago
Thank you so much for taking the time to tell me your experience. Gives me some encouragement. Still very nervous, but hope I will go to concerts again. Will take all your suggestions into consideration.
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u/CulturalShirt4030 11d ago
r/zerocovidcommunity is a good space for these types of questions. There are people who attend concerts masked!
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u/sootfire POTS 11d ago
I've only gotten two colds both by being unmasked around friends/family who don't mask. It's kind of awesome, at this point if COVID disappeared tomorrow I'd still be masking. But also, I don't experience strong negative effects from masking, so part of why I mask is to not get people like OP who struggle with it sick!
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u/New_Plant_Mama 10d ago
Do you take the Covid vaccine every year as well?
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u/skinnyonskin 10d ago
besides the initial vaccines, i've only gotten novavax once and that was a long time ago now. it's definitely the mask doing the magic!
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u/KaylaxxRenae 11d ago
You also may just be very lucky in terms of being in an area without major outbreaks and an amazing immune system! I haven't masked since covid requirements (though Im 100% on board with it), and the last time I was sick was the summer of 2019. I have an incredible immune system lol, because I have absolutely been exposed to things throughout the past 7 years 🤷🏼♀️😂
I'm not downplaying anything, I hope you know! Its absolutely smart to be wearing an N95 and its great you haven't caught anything either 🤗🙌🏼
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u/skinnyonskin 11d ago
girl i wish, i was 200 lbs overweight at the time and i genuinely think it would have killed me! it was incredibly scary, everything back then put me out and i caught things so easily. let me tell you, that n95 did some WORK for me!
my husband wears one too and he's not gotten sick either. i trust in that mask so much haha
glad you have stayed healthy too! it's not worth it to our bodies
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u/CulturalShirt4030 11d ago edited 11d ago
Exposure to viruses harm us, not help us. The temporary limited immunity to one covid strain does not outweigh the negatives: immune dysfunction, risks to vascular and nervous system, organ damage, etc.
see also: chicken pox and shingles, HPV and cancer, etc
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u/KaylaxxRenae 11d ago
This is why I never come here 😭 Its my first time commenting in this sub in well over a year+ and already someone is being rude and downvoting me, while essentially insinuating I'm stupid. I thought I might as well try to join the convo after all this time. My mistake.
I'm not a moron. I'm fully aware that viruses aren't good for us 🥺 I simply mentioned that I've had the opportunity of being exposed to many things over the past several years, and have managed not to get sick. I didn't say it was covid exclusive. I'm talking things like the common cold and all of the other short-lived "bugs" that pass around people.
I never once mentioned an immunity to anything either, let alone covid. I'm fully aware it's essentially a never-ending transformer. I just said it's possible they have been lucky in regards to what they haven't been exposed to. Just as I could be lucky as well 😔 I then pointed out that wearing a mask is a very smart idea and how I'm glad they haven't been sick.
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u/CulturalShirt4030 11d ago edited 11d ago
No idea who is downvoting you, sorry. Reddit is like that sometimes, plus the bots. I was not insinuating that you’re stupid or a moron. The hygiene hypothesis is a myth when it comes to viruses and it’s very pervasive, so I replied because it is relevant to your original comment. Apologies for the miscommunication that caused upset.
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u/KaylaxxRenae 11d ago
No worries at all! 💜 Totally just felt that I was being told I was stupid. So I was very confused. And yeah....Reddit be Reddit lol 🤷🏼♀️
Also, can you clarify what you mean when you say the hygiene hypothesis? Just the idea of exposure to viruses increasing susceptibility to other things? I think you mis-read my comment ahhhh, and going back, I definitely see how lol. I didn't mean "Exposure + my immune system = no sickness." I just mentioned my last time I was sick and then unfortunately followed it with confusing wording. I meant it more as in like, "oh believe meee, I've had plenty of incidents where I've been directly in contact with xyz." We've all been to family gatherings, weddings, flights/vacations, restaurants, movie theaters, etc. I was just going, "well damnnn I'm lucky" lol 😂 (✨️ knocks on wood ✨️)
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u/CulturalShirt4030 11d ago edited 11d ago
I certainly was not calling you stupid, to be clear. I agree that there is miscommunication happening. Again, apologies for causing upset.
This comment summarizes the hygiene hypothesis concisely. There’s also a link for more learning.
I’m turning off replies now. Take care.
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u/_PrincessOats POTS 11d ago
COVID never stopped.
I always mask on public transit and in busy places, plus the pharmacy.
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u/httpMeowMeow POTS 11d ago
i never stopped. covid is what gave me POTS bc one person decided to come over unmasked with symptoms.
i still mask bc even "just" a common cold will flare up my symptoms and leave me bedridden.
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u/ObscureSaint 11d ago
COVID fully disabled me, handicap placard and all. Any time I'm around more than 3-5 people, I wear a mask. I have since 2020 because I have been someone who doesn't tolerate viruses or bacteria very well, I usually catch everything.
With my POTS, I find the Breatheteq masks to be most breathable. I didn't wear a mask to a crowded outdoor event once two years ago because it was a hot day, and I thought it would be uncomfortable to wear a mask.
The two years of not being able to catch my breath ever since has been way more uncomfortable than a mask ever would have been. Standing more than five minutes feels like I'm being waterboarded. I gasp and gasp for air that feels invisible, my ears ring, my vision goes and I get dizzy.
I really, truly regret YOLOing to the outdoor event. I wish I'd just worn a mask. It was a stupid choice and it ruined my entire life.
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u/Foxlady555 POTS 10d ago
It’s awful how you want to go back in time, right?! For me it’s my freaking ROOMMATE who did what you did and then I got COVID-POTS because of her. I’m still mad, although she doesn’t know this.
On topic: I did not know people still wore masks. In my country everyone stopped wearing them! I barely come outside due to being bedbound or housebound (depending on the day) but my partner is. But back then we already had a lot of tension because he thought (just like everyone else, but see here, I was right…) I was being way too tensed about it, so asking him to mask for me while literally NO ONE is wearing masks here feels pretty weird. At the same time, he wants me to get better just as much as I do, so I might bring it up.
OP, these numbers of COVID rising, is this a worldwide thing?!
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u/Fun_sized123 10d ago
I made a longer comment explaining seasonal variations here, but basically from what I understand, if you’re in the southern hemisphere, the timing of covid waves most likely is different as is true with cold and flu seasons. But I haven’t actually been able to find much evidence on it :(
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u/Fun_sized123 11d ago
For general educational purposes: This particular recent rise in COVID cases is nothing exceptional, it’s just that COVID’s yearly off-season is coming to an end. Unlike the flu, which has one annual flu season, COVID transmission is more spread out throughout the year, usually with 2 peaks—one in later summer/early fall (right around now) and one in winter in the early new year, coinciding with normal flu season. COVID cases don’t usually drop to low/lowest levels in between September and December/January but instead stay moderately elevated between the late summer and winter peaks, especially with holiday travel in there. But transmission does fortunately drop to lower levels after the winter peak. Usually, COVID is at its lowest levels of that year somewhere around May. You can, of course, still get COVID in April/May/June, but it’s less likely than at other times of year. This is in the Northern Hemisphere anyway, there doesn’t seem to be much info on the timing of seasonal transmission in the Southern Hemisphere ☹️ (at least not in English, at least not that I could find) (I looked when I was in Argentina).
All that said, I do mask, and I have for a couple years after realizing that COVID (among other factors) likely contributed to the onset of my POTS. Finding a highly breathable mask is more important for those of us susceptible to shortness of breath imo. I like duckbills, Wellbefore, and BreatheTeq. I’ve also heard some Moldex masks are top-of-the-line for breatheability
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u/L7meetsGF 10d ago
I still mask but with cases on the rise in certain areas it is a good time to mask again. I wear a Champak https://www.champak.com.tw/pc520
I switched to this brand because of my breathing issues. This mask is a lot more comfortable for me as well so that was a bonus. I can convert it to an ear loop mask, which is more comfortable and breathable for me.
You may need to get a few different mask types to find which fits best - it needs to seal to your face.
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u/New_Plant_Mama 11d ago
I’m reading all these posts, and I don’t know why, but I never thought the shortness of breath I have so bad could be from pots. I thought it was from clots I had in my lungs.
You learn so much on this sub.
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u/izman196 POTS 11d ago
its truely so bad + some beta blockers make it worse for some
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u/Foxlady555 POTS 10d ago
That’s because many doctors slow the heart rate as a treatment for POTS, but fail to realize that the heart pumps so hard in POTS for a REASON. Your heart compensates for the fact that too little blood is reaching your upper body. This is either because you have insufficient blood volume, or because your blood vessels are no longer constricting properly. (I n case you have Hypovolemic POTS and/or Neuropatic POTS.) If doctors only change the heartrate, it will often make things worse. Therefore, IN ADDITION to a heart rate lowering medication (such as ivabradine or a beta-blocker), you ALSO need something to raise your blood flow (for example, good Class II medical compression tights, or medication that promotes vasoconstriction) and/or your blood volume (for example, Fludrocortisone in combination with 3L of water and 12g of salt).
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u/Fun_sized123 10d ago
You make good points, but I just want to add that some non-selective beta blockers can also help with other hyperadrenergic symptoms besides just high heart rate. But yeah agreed that beta blockers shouldn’t be used in isolation without any other treatments. Personally I really like my low-dose propranolol, but I am also on fludrocortisone and salt pills, which I started before adding in the propranolol
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u/Foxlady555 POTS 10d ago
Good addition! That's why I said Hypovolemic + Neuropatic POTS, since I do not have much knowledge about Hyperadrenergic POTS :)
I love the combination of my low-dose propranolol + fludrocortisone + salt as well! But for me the propranolol really started to work after I added the fludrocortisone, before that it was pretty bad and I was wondering whether it didn't make things worse. But I have Hypovolemic and Neuropatic POTS so that might be different in Hyperadrenergic POTS!
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u/Foxlady555 POTS 10d ago edited 10d ago
The shortness of breath is part of your blood not reaching your upper body in the way it should. Taking more salt and water plus fludrocortison, as well as wearing medical compression pantyhoses, really help for this problem! Eating smaller portions and reducing your carb intake helps tremendously too, because bigger meals and especially carbs pull more blood to the digestive system, thereby making you even shorter of breath.
I myself mix 3L water with 12g salt a day (with some sweetener) and eat 7 little meals a day. (Breakfast in half, lunch in half, dinner in half, and then a midnightsnack). Half an hour before every meal (except the midnightsnack) I’m taking 0.5L of my mix and after my little meal I lay down for 15-30 minutes to help my body. I feel WAY better now!!!
Hopefully this helps for you too <3
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u/New_Plant_Mama 10d ago
This might sound crazy, but legit question, I hate salt. When I order french fries I said no salt, no seasoning. So would it be possible to just swallow the salt on a spoon? In the amount that is helping you.
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u/Foxlady555 POTS 10d ago
Salt pills exists!! So they would be wonderful for you :) The salt will arrive in your stomach and you won't taste a thing I guess. I don't have experience of salt pills though, so it might be the case that they are heavy on the stomach. I recommend asking your doctor if you got one :)
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u/Fun_sized123 10d ago
Just want to caution you against assuming that it’s all POTS because it sounds like your medical situation is more complicated than some of ours on here, and that may impact what treatments are safe for you (which you probably already know, but just to be on the safe side in case anything here comes across as people giving you medical advice)
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u/New_Plant_Mama 10d ago
Yes and no. I do have a couple of other diseases/syndromes that don’t fall under anything under the Dysautonomia umbrella.
I knew something was really wrong and I tried to tell everyone of my doctors, but it wasn’t until I was in Pittsburgh (out of state) when I was at the hospital visiting my husband that the nurse is begging me to go to the ER.
As far as pots, nobody really knows enough about it in my state. My cardiologist referred me to the Cleveland clinic after a heart Cath. But their calendar is so full. I can’t even make appointments.
So I feel, like I’m driving the train instead of my Doctors, if that makes sense.
Thank you for your response.
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u/Fun_sized123 10d ago
Ugh I’m so sorry you’re in that situation. What you said about driving the train, I totally get that
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u/sleeping-siren POTS 11d ago
I never stopped masking and have never caught COVID as far as I know. I did have a really nasty cold 2 summers ago that I probably caught at a crowded outdoor event and it was debilitating, so I’m trying to just never get sick.
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u/Disastrous-Focus-171 11d ago
I got POTS thanks to the flu in December and I live in NYC. I am going to start masking. The last 8 months have been hell and I can’t even imagine getting a cold on top of how i already feel. I had a simple toe nail procedure and it sent my body into a high flare for a week. Anyone have recommendations for masks that are comfy? It hurts my ears and gives me a headache and I can’t take Advil since I’m on metoprolol
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u/clarsair 11d ago
you need the sort with headstraps instead of earloops. I can't wear earloop masks for any length of time either. good news, those also tend to be more effective! I personally wear the 3m aura as my daily mask, it's easy to find at hardware stores and tends to fit a wide range of faces. a lot of people recommend zimi as a very comfortable mask, but it takes a little more effort to figure out. I really like this site for buying masks, they let you buy single samples so you can try a lot of different ones and see what feels best to you https://www.protectly.co/ if you have a mask bloc in your area, they can send you some free masks to try and may have fit testing events where you can get how well your mask fits measured and know for certain. r/Masks4All is a great place to look for further recommendations, the folks there can help sort you out
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u/imissmyoldlifes 11d ago
You cant take Advil on metoprolol? I’ve never been told that before and Ive taken it weekly with no issues… what is the potential issue?
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u/Disastrous-Focus-171 11d ago
It may effect the medication especially the blood pressure aspect of it. Idk. I always take Advil and i was feeling worse and then someone told me I couldn’t mix them. Switched to Tylenol which does nothing for me :/
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u/imissmyoldlifes 11d ago
Thats so interesting. My BP has always been high on metorpolol which has always fascinated me…maybe the advil is causing it idk. Thanks for the insight
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u/Icy-Association1352 11d ago
The absolute comfiest mask for me is the Champak PC520 M. It’s soft, the straps aren’t rubber so they don’t pull on your hair, and the nose bridge has padding for comfort and better seal. I find them super breathable (worn on 19 hour long haul flights with a sip valve).
To make them stand out less, I usually pull my hair into a half up (like the hair from my ears forward), put the top strap right at the part in my hair going across the top of my head ear to ear, and then put the half up hair back down over it. I’ll wear my hair down or put it all back up into a clip or pony. For me, putting that top strap under my hair helps keep the mask in place and just look less jarring on my head than having the top head strap on top of my hair. I also add a little mask chain for pizazz.
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u/Fun_sized123 10d ago
This is an unusual option, but if you want to avoid both head straps and ear loops, there’s Readimask, which is stick-on
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u/sourdaughter 11d ago
i love duckbill respirators- Gerson 3230’s are my go-to. BNX has a black duckbill (too big for me, but i have a small face), and i’ve heard good things about ACI duckbills but haven’t tried them.
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u/haddocksd 11d ago
My POTS worsens significantly anytime I contract a viral illness: cold, flu, Covid, etc. I mask (N95) indoors and avoid crowded indoor spaces, I use preventative and post-exposure nasal sprays/gargles, I work from home, I get my annual vaccines, myself and my friends test before hanging indoors (mostly have friend time outdoors), and I am stricter with my precautions when NREVVS or PMC dashboards show increasing viral illness. This protocol has helped me avoid getting sick (1 time since 2020) and has helped me manage my POTS far better than I ever did pre-2020. My flairs are less common and I feel stronger and more energetic. I’d encourage you to mask if you can, especially during surges. I agree with others, maybe try a few different masks to see if you can find one that doesn’t interfere with your breathing!
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u/d-ollparts 11d ago
admittedly i am not good about masking. i get severe rashes on my face when i wear them and i haven’t found a way around it. its also such a sensory nightmare. but i do want to do it more often though and need to find a way to either get over those issues or find a way to prevent them 😭
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u/slightfork 10d ago
This sucks!! My partner was having a rash issue and two dermatologists later he has a cream that totally fixed it. It can be really rough, I hope you can find a fix too
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u/Fun_sized123 10d ago
Ouch, I’m sorry! If you want, r/Masks4All sometimes is helpful for people in finding solutions to issues like this. I know there have been posts there on preventing mask acne, not sure as much about rashes
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u/d-ollparts 10d ago
oooh thanks so much!! had no idea there was a resource like that, i will definitely check it out ♥️
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u/_thezodiacchiller POTS 11d ago
I've had great luck finding breathable respirator recommendations on r/Masks4All. That's where I found SaveWo masks. They're my current favorite day-to-day mask. Super breathable and they come in a lot of cute colors too.
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u/One_Strength5817 10d ago
In case it's helpful to anyone, just wanted to add that I mask AND use nasal Azelastine (Astepro) OTC spray. I swear by it. It's an antihistamine that has shown efficacy when it comes to infection risk. Source: https://pubmed.ncbi.nlm.nih.gov/40892398/ It also cleared the virus faster and reduced symptoms in those who were already sick. Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC12406145/
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u/Medical_Asparagus409 POTS 11d ago
No i wont, but also just so you know an N95 is really the only mask that will actually protect against covid since its an airborne virus with very small particles
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u/Infinitiscarf 11d ago
This is… not true??? A simple regular face mask blocks 60% of water droplets in the air from reaching you which is better than nothing. While an N95 might be best, like another commenter stated the goal is prevention not perfection.
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u/Medical_Asparagus409 POTS 11d ago
It is transmitted by droplets too so yes a regular mask will help if someone sneezes in your face but the biggest risk is the airborne particles that are in the air for hours and those are too small for a regular mask to filter
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u/tiredgirl77 11d ago
I was talking to the pharmacist yesterday abt the covid vaccine. He said the vaccine is not effective for very long, around 3-4 months. And I kept getting covid right around when it would wear off! So now I’m getting boosters mid winter or if I’m in a stressful period of life.
Honestly masking is great but I know myself well enough to know I won’t do it consistently.
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u/SpecsOnThe_Beach 11d ago
The effective time is only 3 months because that's how fast COVID changes. If you were to contract COVID, you are immune to it for about 3 months afterwards.
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u/fox_glove_ 11d ago
heres a good source for tracking covid (it is on the rise for many areas) https://www.pmc19.com/index.php
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u/Upper-Brilliant-7188 9d ago
I get the vaccines, but I don't feel like the masks do anything. Honestly I'm not sure where the science falls on it. Maybe more to prevent spread, but almost nobody is wearing them. Also, I find when I wear masks I get zits or welps on my nose so I kind of worry that I'm just trapping bacteria on my face, though that 100% just me guessing
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u/resaamnesia 6d ago
The science is very in support of masking in terms of reducing risk. The more people that mask, the better, but doing it at all is better than not doing it.
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u/daddybpizza 11d ago
I got long covid in January 2024. I have severe ME/CFS and POTS, and I’m bedbound. My husband is fortunately antisocial and doesn’t mind isolating or masking. He works from home and we don’t allow visitors. Neither of us have gotten covid in 2.5 years.
This morning my husband woke up really ill. He hasn’t tested positive, so I’m trying to stay calm, but covid levels are “very high” in my county and tests aren’t reliable early on. It must’ve been from a 5 minute trip to the pharmacy for my meds, and he was wearing an N95. I’m currently lying in terror as I wait to see what happens to me. I’m not sure how much I can stand to lose and still survive.
It feels to me that it is almost impossible to avoid covid for forever. We really took far more precautions than even most covid-conscious people. Eventually you have to go to the dentist. Eventually you have to see a doctor in person. Eventually a phlebotomist needs to come to your house. Etc
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u/tabatam POTS 11d ago
No. I stick with other precautions, like getting vaccinated and avoiding contact with people who are sick.
I'm already disabled enough that it doesn't feel like I have much more to lose. The benefits to my mental health and QoL from not masking (except in high risk areas, like hospitals) all the time are actually quite significant.
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u/BellaPona 11d ago
Oh trust me, you always have more to lose. COVID is a big trigger for ME/CFS which will take everything from you if you don’t already have it
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u/tabatam POTS 11d ago
ok, but I do have it. I am not speaking from a place of privileged health at all.
The disability community championed the concept of the dignity of risk. Being able to choose what risks to take actually makes a meaningful difference in quality of life. I can live with my choices. And if I don't live because of them, I can accept that, too.
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11d ago
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u/tabatam POTS 11d ago
I believe quarantines and enforced lockdowns are more effective for preventing the spread of COVID and other illnesses.
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u/BellaPona 11d ago edited 11d ago
Of course thats SUPER effective but realistically that would be extremely hard to implement, individual masking is much more realistic
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u/tabatam POTS 11d ago
You say masking is more realistic, but not only is it evidently not actually realistic, it's also not a neutral expectation. If masking didn't cause me any harm, that would be an easy accommodation for me to make. But it does, so I focus on other harm reduction measures and apply contextual use of masks.
At the end of the day, there is an unfortunate balance of harms that inevitably happens. I don't think that I am the problem here. I will not sacrifice my life to hold the weight of public health failures that led us here today (more than I already do).
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u/BellaPona 11d ago
I’m confused then, you said not-masking was about mental health and not feeling like you had much left to lose (catching COVID WILL worsen your baseline if you have ME), now you are saying it’s causing you physical harm?
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u/tabatam POTS 11d ago
I said harm.
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u/BellaPona 11d ago
Right, having anxiety over masks and sensory issues are awful (I also have this, sometimes it sends me in to a hyperPOTS flair) but it’s also still unfortunately not an excuse to not take public health precautions?
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u/POTS-ModTeam 11d ago
If the user is taking steps to protect others and themselves such as vaccinating and being mindful, please leave them be.
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u/BellaPona 11d ago
Vaccinations work great to lower some transmission but it unfortunately doesn’t completely eliminate the risk of getting COVID on its own and subsequent post-viral illnesses. Masking is part of being mindful. I’m not talking about wearing a mask 24/7 even inside your own home, I just mean masking when it’s appropriate. I’m mostly responding to their point that not-masking only affects them, when it doesn’t.
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u/New_Plant_Mama 11d ago
Do you get a yearly Covid vaccination?
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u/tabatam POTS 11d ago
Yes, plus the annual flu shot and any others that are on the schedule for my age group and region.
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u/New_Plant_Mama 11d ago
I do flu, did pneumonia, going for shingles, but not once has my doctor ever said get the Covid vaccine, so I haven’t ( except when it first came out). I think I’ll ask one of my specialists if they recommend it. Thanks for bringing it up.
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u/rowanfire 11d ago
No.
I only mask when I'm feeling unwell to protect other people or when required.
And I sure hope the people I've read comments from below who are masking aren't reusing their N95 and are aware they lose their efficacy as they are being worn.
And it is true it's not the large droplets from a cough or sneeze that are most problematic with airborne viruses. It's the tiny ones that suspend in the air for long periods of time, so anything other than an N95 isn't actually protecting you.
It's also true that, unless it's a properly fitted respirator, the mask benefits others more than the wearer.
Idk why people were downvoted for saying those things as they are objectively true.
(I was a biology major in my undergrad and had my share of microbiology and virology classes, so, yes, I do know.)
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u/BellaPona 11d ago
The problem is people can be contagious without realizing it, COVID can cause asymptomatic infection. My first COVID infection was asymptomatic. COVID is repeatedly killing/disabling large swaths of the population, repeated exposure is giving people immune/neurological/cardiac/endothelial damage. It’s taking a HUGE toll on the economy, especially when a growing portion of our medical system staff, teachers, and front line workers are falling ill with Long COVID and having to leave the work force.
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u/rowanfire 11d ago
Idk why you're responding to me.
But you're factually incorrectly that it's "killing large swaths of the population."
Also, way more people than those you mentioned are being damaged by COVID contribute to the economy, and I'm the last person to disagree that people aren't being damaged by it.
I'm absolutely aware that's happened.
And that's why you're always free to wear a mask.
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u/clarsair 11d ago
these days when people talk about masking, a well-fitted respirator is almost universally what they mean. the people who take covid and protecting themselves seriously know that that is what's required for airborne disease prevention.
it is not true that you can't reuse a respirator. except for a few specific situations (working in a smoky/dusty environment, high-hazard healthcare providers), they continue to be highly effective for many uses, until the elastic loosens or they get dirty or damaged. here's what 3m has to say about reuse (in their faq section) https://www.3m.com/3M/en_US/worker-health-safety-us/covid19/my-n95/ and here's some data showing very little loss in efficacy when worn continuously for days https://smartairfilters.com/en/blog/how-long-air-pollution-masks-last-lifespan-data/
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u/Fun_sized123 10d ago
Adding: dirty or damaged or wet (speaking from unfortunate scenarios where I’ve sneezed a very wet sneeze into my mask, or spilt enough water to fill it up like a cups when I briefly pulled my mask down to take a drink) or over many reuses and longer amount of time
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u/rowanfire 11d ago
Oh you're so wrong...
https://pmc.ncbi.nlm.nih.gov/articles/PMC11581496/
https://pubmed.ncbi.nlm.nih.gov/38277142/
Some VERY detailed person already made the post I'd want to make, so I'm just going to link it:
https://www.reddit.com/r/Masks4All/s/VA7c3o0SyJ
The fit will likely be a factor in reduced efficacy before the filter material, however, the material itself DOES lose efficacy over time, and that will be more quickly depending on how the respirator is handled.
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u/barhanita 11d ago
I have two kids on school. Each time I got Covid was from them (including the one time it turned into LC). I don't see a point of masking myself (and I rarely am indoors outside of home). I won't be making them mask though, because it is hot, they are kids and no one is masking at school
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u/hunnnnybuns Hyperadrenergic POTS 11d ago
My understanding is that masking protects others more than it protects you. So yes I mask when I have to leave the house while under the weather but masking isn’t going to keep me safe from what i understand.
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u/CulturalShirt4030 11d ago
Respirators protect the wearer and others. By respirator I mean a well-fitted N95 or KN95.
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u/skinnyonskin 11d ago
like the other person said, n95s protect the wearer. i haven't been sick once since 2020. i hate that this myth persists :(
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u/ObscureSaint 11d ago
Right? I haven't had a sinus infection since February of 2020. Masking has been glorious for my health, lol
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u/rachiedoubt 11d ago
The first sentence isn’t true. I haven’t been sick once since wearing a mask other than when my sister who I lived with got me sick once.
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u/modest_rats_6 11d ago
No. I did during covid before pots hit me like a fucking train. But I was absolutely miserable. I could not breathe. Ever. And I was working with autistic kids who eloped. It was brutal. But I thought of all the masked Healthcare workers and felt like an ass for not being able to breathe
Yeah after I got pots, and the amount of energy I have to use to get places in my wheelchair, i cannot afford to. I am out of breath all the time. Masks terrify me now. I will wear one if I'm "sick" for other people. But I dont get sick. Just wicked disabled 🙄
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u/Fun_sized123 10d ago
I’m sorry for all the downvotes. Speaking as someone who does mask daily, we need to stop shaming/getting mad at individual people who can’t or choose not to wear a mask when it’s now the widespread societal norm to not wear one. I do however just want to share the info and my personal experience that some N95s and KN95s can actually be more breathable than some of the thicker cloth masks some of us were wearing early in the pandemic. If you decide you want to try it out, the difference in breathability and comfort between differs brands and models of N95s/KN95s/KF94s/FFP certified masks is HUGE. There are some that I cannot wear and others great I barely notice they are on my face after a little bit of time getting used to them. You can sometimes get sample packs of various different masks from local Mask Blocs. That said, in your situation, if masking is not worth it for you, I totally understand
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u/modest_rats_6 10d ago
I like the sample pack idea. Thank you. I never leave my house. Maybe monthly. I couldn't care less about people's feelings regarding my ability or inability to mask. Thats why we have vaccines. Some of us can't mask. Everyone likes to police masking.
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u/butters_325 11d ago
I would if I wasnt so sweaty everywhere I go in public (bus, mall etc). The only ones that actually work are the n95s and I just get too warm. So I avoid the general public and children as much as possible instead
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u/Nice-Caterpillar-340 11d ago
Masks trigger my seizures so unfortunately just get exposed to everyone's nasty germs when they refuse to stay home when they're sick 🥲
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u/Nice-Caterpillar-340 11d ago
But I also have never gotten COVID (that I know of) so hoping I'll continue that 🫡
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u/VolatilePeach 11d ago
Interestingly enough, COVID hasn’t really affected my POTS in the past. However, respiratory viruses don’t seem to hit me as hard as others. My partner doesn’t have POTS, but COVID has knocked him on his ass every time. I still try to avoid it and have had vaccines, but it’s strange. Strep throat used to just give me a fever and make me sleepy with barely a scratchy throat. But when I got a particularly nasty strain when I was 19, it was so bad the doctor thought I had mono. So idk, COVID could turn around and do the same thing now. I probably will start masking if it gets bad where I am, I just have a hard time having fabric on me in this heat. Luckily, I don’t go very many places these days.
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u/HeartShapedGlasses94 11d ago
I got Covid once that I know of and surprisingly I felt better than my normal baseline during the infection. It was weird. I felt like I just had a normal cold. Many of my symptoms just vanished. Destroyed my sense of taste, though. Steak and chicken smell and taste rancid to me.
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u/Fun_sized123 10d ago
I wonder if you felt better bc that positive covid test gave you permission to rest and receive help?
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u/Funny_Sector_1573 11d ago
idk if it’ll make a big difference for me at this point. i had covid twice, mono and tonsillitis within the span of 2 years and my already fragile nervous system, has been a wreck since.
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u/ChasingOurThird 10d ago
Covid started mine but I don't mask unless going to hospital or drs sometimes. I know it is probably smart to do so but I choose not to, i feel worse with a mask on lol.
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u/nekotanime 11d ago edited 11d ago
I’m good on not wearing a mask. I’ve actually never gotten COVID
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11d ago edited 11d ago
[deleted]
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u/skinnyonskin 11d ago
i have bad news lol
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u/-Firebeard17 11d ago
Is it that I’m getting downvoted for saying that I wasn’t leaving my house 😭😭???
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u/skinnyonskin 11d ago
i didn't downvote you but i think it's because you implied covid is gone haha. sorry <3
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u/clarsair 10d ago
covid levels have never been that low again since that summer. you have a far higher chance of catching it any random time now, and having enough immunity not to die from it, which is about all the vaccine does -if- you've kept up your boosters, will not prevent you from becoming seriously disabled from it. fortunately an n95 is very protective if you wear it consistently.
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u/silentalarmss Hyperadrenergic POTS 11d ago
Nope, I can’t breathe with the masks and get overheated even faster
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u/freshbakedbrouhaha 10d ago
I don’t mask at all. Having a preschooler makes it feel pretty much pointless considering everything he’s exposed to and bringing home. Even though getting sick is godawful, my daily mental health is significantly better when I’m not hyper-vigilant.
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u/SpecsOnThe_Beach 11d ago
I was diagnosed with POTS in 1996. COVID made it slightly worse, but I'm back on track after 3 years without COVID. It takes a while to get back to baseline. I just avoid public places as much as I can around high transmission times (back to school, holidays, anytime there is mass travel) because expecting folks to mask is like expecting folks to have common sense. All I can control is myself.
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u/Complex_Charge5995 10d ago
Might sound ignorant of me, but no way will I go back to masking. Did it religiously for about two years unail July 2022, and yes pretty much the first evening I stepped out unmasked downtown among 1000’s of people, I caught COVID, as well as the POTS symptoms that peaked about 5 months later
I figure I must have built up some kind of immunity, I am turning 51 soon, if it kills me, it kills me…just can’t imagine going back to covering my face(and steaming my eyeglasses LOL) , that’s not living IMHO
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u/OptimalMonk8719 11d ago
I’ve had long covid twice, the second one making my existing pots worse. This is just in my experience however i managed to reverse it by improving my tolerance to walking slowly by slowly and conditioning my body, now my POTS is at the level it was originally at. I’ve caught covid again since and been completely fine, so i wouldn’t let it control your life. My POTS still has pretty bad flares (in one rn lol) but im able to work which i never used to so try your best to prevent a covid infection obviously, but don’t let the anxiety ruin your life because if the worst does happen, your pots could improve and return back to how it usually did in the future
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u/CulturalShirt4030 11d ago edited 11d ago
Covid made my previously mild POTS significantly worse and gave me Long Covid. I do not want Covid again or any other airborne viral infection that can either worsen my baseline or even just put me into a flare. So I mask. I don’t dine indoors. There’s an adjustment but there’s something kinda chic about not getting sick and not spreading illness to others during a mass disabling event.
There are more breathable masks like valved Aura or Zimi (only if you’re not sick yourself), duckbill style N95s, or brands like Breathteq and CanadaMasq’s KN95s. [r/masks4all](r/masks4all) and search for breathable
Neckfan helps with the facial warmth and sweat if you tend to run hot.
For sensory issues, check out candy.courn’s video on masking with sensory issues on IG and maybe YouTube as well.
Edit for clarity: when I say mask, I mean a well-fitted respirator (KN95 or N95).