What is Dysautonomia? Long COVID-19 

*Captions are being made, thank you for your patience!*

The baby cooing and blowing raspberries in the background is adorable! Don't worry about him being a distraction while filming. He just adds a special cute factor to the clip!

I highly recommend getting a shower chair/stool! Taking baths even in the way Jessica describes doesn't work for me personally, but being able to sit in the shower is a LIFECHANGER when you've got ME/CFS and POTS. If your shower is in a bathtub there are specific benches you can get as well :)

One of the worst parts of having POTS is that symptoms like exercise intolerance or fatigue are often brushed off as “laziness” or something that you need to “push through”. But in reality, listening to your body is critical for your health and does not make you “lazy” or unworthy :)

I'm a covid survivor who ended up with dysautonomia! At 24 before vaccines were available I caught covid at my essential shipping job and now I'm 26, trying to get on disability, and been formally diagnosed with PoTS, CF/ME, and general dysautonomia. I'm still struggling almost two years out with internalized ableism and the capitalistic ideal that worth is defined by work. Like I'm worth just as much now when it's an achievement that I can sit up for an hour at a time as I was working in a warehouse walking miles a day.

The biggest step I took to start taking care of myself was to listen to my own body. There's this overarching pressure in US work culture to never acknowledge or admit a single iota of physical distress and it's heavily socially encouraged to work the same regardless of how much pain you might be in, it even provides you social glory if you are messed up but still working hard. It was a big step for me to start openly saying 'hey, I'm sick, like capital 'S' Sick, and it's never going to go away - only better or worse. Sometimes I need to eat food right then and there, sometimes I stand up and have to sit right back down, sometimes my hands shake and I need help opening something. I'm just working with what I've got.' This was a lot in US retail culture. I know in offices there's maybe allowances to eat a dang granola bar, but in retail there really is not. You are On The Floor, you are On Duty, there are Customers In Line and you can't turn your back on them. Except you're staffed such a way that there's never no customers in line, and there's always something to do on the side. But coming at it straight, just openly admitting that sometimes I Need Help and staying to listen to my body has left me on such a better state. People act like it's obvious, but in reality in many cultures you're conditioned from birth to completely compartmentalize physical distress in order to serve societal/capitalist gain. Listen to your bodies, lovely people!

Honestly the fatigue is the worst for me. I hate when people are like "you have the same number of hours in the day as [famous person]" because I don't. I have to sleep 10-12 hours a day just to function at all. I can't imagine how much I'd get done if I could sleep 8 hrs and feel well rested.

Sometimes I wish that doctors informed of things like this when you get diagnosed. I have had Celiac Disease for about 6 years and have learned more through videos like these and the internet than the doctor that diagnosed me

It's extremely important for people who have long COVID-like disorders to speak out on their experiences! Your video on the PACE trials for ME/CFS saved me from trying physical therapy for my CFS caused by COVID. Doctors are just now finding out that PT can make long COVID patients significantly worse.

I've been trying to hunt down a reason for my lifelong faintness, dizzy spells, heart palpitations, blood pressure issues, temperature intolerances, etc. I've been tested for so many things but not once has a doctor suggested dysautonomia. Good god. I don't know whether to laugh or be extremely mad. Both? But this gives me a new lead to pursue. Thank you Jessica! And Rupert's happy chatter and cooing in the first half was precious!

I babysat a girl with familial dysatonomia. She was so sweet, just the loveliest person. She had a feeding tube that she would insert herself once she reached her teen years. She also got surgery to fix a hunchback at age 13. They didn’t want to get the scoliosis surgery until AFTER her Bat Mitzvah since we are both of Eastern European Jewish heritage as Jessica mentioned.

Thank you for including Long Covid its nice to be seen when so many people dont believe its a thing (14 months in from covid and still ill, its definately a thing) x

This is the first time I’ve seen someone without a Lyme diagnosis mention Lyme in a video like this! Thank you for mentioning it, it’s severely underrepresented, misunderstood, and most people have a misled idea of what Lyme is. As someone who has lived with Lyme for half my life, thank you :)

"you don't have to consciously tell your body to breathe" *Is suddenly consciously aware of my breathing*

I know this isn’t what this vlog is about, but I wanted to tell you that your vlogs about choosing an electric wheelchair encouraged me to get one. It’s helped me so much because I can now leave my house. Thank you for helping me.

This is what I needed to hear. I am one of those with Long Covid who was diagnosed with sinus Tachycardia and orthostatic intolerance - December 13th, won't forget that date!!! Fun fact, I saw your POTS video a long while back and thought - oof that's a version of not fun I never want to experience, fast forward x amount of time and ... joke's on me. I could literally, very gently, hug you for the help. I have found electrolyte drinks to help

Watching this, even though I have POTS due to EDS and know a lot of this. Thank you for bringing attention to dysautonomia! It’s a difficult thing to live with and definitely could use more attention and understanding. Edit: 10:14 If you don’t have a bath/don’t like baths, shower chairs are also excellent!

this video may have just changed my life. i had covid months ago and have been experiencing so many of these symptoms ever since. i was not told anything about long covid and had no idea about any of this. thank you so much.

I have secondary POTS thanks to Myalgic Encephalomyelitis, things that work for me: lukewarm showers, lots of fluids, electrolytes packets, monthly fluid infusions, loose fitting clothes, beta blockers, and lots of kitty snuggles 🐈‍⬛

Thanks to EDS, POT, and MCAS (a condition that often accompanies the two that is basically “allergies all the time for no reason!”) I’ve “joked” for the last two years that, barring the fever/loss of taste & smell, I could never tell if I was developing COVID symptoms, because I feel like that all the time anyway. *Maybe she’s born with it, maybe it’s SARS-Co-V-2.* I’ve been feeling extra POTSy lately so this was a timely video. “*Oh my god, I’m dying*…no, no you’re not” really IS the best way to describe it. 😂

Thank you, Jessica. 🙏. You present these things in such a wonderful way that I can understand what is going on. Thank you, too, for adding to our knowledge. And the fact that you can pronounce those incredibly long multiple syllable words is impressive as heck. I am in awe. I am also in awe, that even though we can see you are not feeling well….at all….you still look gorgeous and are covering this subject matter in a wickedly intelligent manner. You are an exceptional human being. ❤️. Hearing Rupert in the background is a beautiful plus. Thank you for sharing his part of the conversation. ☺️

My wife thinks she has a form of dysautonomia, so this was incredibly useful to me. It’s always good to have things explained in such a clear way. Thanks, Jessica! 💚

Oh girl, such an important video! Only coming out the other side of long covid now (or just going through a good patch)…caught it in Feb and it’s been A TIME! My nervous system has been all over the place. Crazy pins and needles all over, heart palpitations, dizziness when standing up, patches of skin that get hot but aren’t hot to touch, a random stammer that comes and goes! My gaps between flare-ups are getting longer, thank goodness 😭 The worst thing that was happening during my long covid was the nerve pain in my face and head, and blood pooling in capillaries/veins in my fingers and arms 😩 Noise sensitivity is hard with kids. The fatigue, christ. That’s gone thankfully. I had covid years ago and was vaccinated so this really took me by surprise! The Irish medical system hasn’t been helpful at all unfortunately x

Thank you for 1. being fabulous 2. the education :)

Thank you for explaining. I was diagnosed with PoTS in 2020 after having Covid in 2019. It’s changed my life so much and I still don’t know much about it.

I absolutely love the videos where we can hear the baby in the background. It is not at all distracting.

I got diagnosed with EDS in 2019-ish and in 2021 I stood up one day and nearly blacked out. Ended up in the ER and the whole time I was like 'aahhh there is it, there's the POTS'. (I know not everyone with EDS has POTS but it was such a large number that I wasn't surprised when a cardiologist told me)

I have never felt a video in my core this strongly. I've had Pots since about 2nd or 3rd grade, but wasn't diagnosed until junior year of high school. For me, stress is my biggest trigger. I remember just falling over at least twice a week in college...Love that you are bringing awareness to all the aspects of this!

Rupert's chitchat in the backforeground is too adorable. 🥰

I have (a relatively mild form of) dysautonomia that particularly effects my skin, digestion and blood pressure. When I got covid, I lost a lot of my strength, fitness and confidence - glad to see more people are learning about dysautonomia, but sad that that’s because more people are suffering

I have had arthritis for years and have had all of these symptoms that my healthcare providers just couldn't pinpoint. It is so nice to know this is why

For showers, I recommend getting a shower chair, it's a game changer.

I have dysautonomia after a TBI (Traumatic Brain Injury). Besides being secondary to the conditions you listed, it also occurs from anything that damages your nervous system, which can include trauma like a concussion or whiplash, surgery, and viral infections. It's not just COVID, but any viral infection can cause it. I think it's caused by the inflammation response in your body from fighting it. It seems to be more common in COVID, but that might be because it's infected so many people.

This was very useful! I had Covid and had to put my entire life on pause for 9 months until I recovered. The shower thing is very true and even scarier when you live alone 😬😄

I got diagnosed with Post-Covid Syndrome this year. Literally my whole life taken from me. Your videos have helped my mental health this year and coming to terms with my new life as a disabled person. Keep doing what you're doing, and happy parenting!

Worst part for me? Nerve pain it sucks so much, and Heat Intolerance(in florida) I die every summer it feels

I did some research into POTS when my apple watch was telling me I had irregular/fast heartbeat with no physical exertion. One week of wearing those heart monitors and one ultrasound later and fortunately there’s nothing anatomically wrong with my heart. For some reason it just works harder than it needs to. Turns out that was a big factor in my fatigue. So yeah thx Apple Watch

For the orthostatic hypotension, I've found that thigh-high compression stockings really help me! And they can certainly look retro with the elastic that looks like garters!

I have EDS and POTS - you mentioned tight clothing as a "no". In the states at least doctors prescribe compression stockings, either knee highs or full leg, and it really does help! Part of the problem is the blood wants to pool in my legs when I stand up. My legs turn red, purple, blotchy, etc. The compression gear keep this from happening!

I got my POTS and EDS dx yesterday after learning about it from your videos! I've been struggling with these for 9 years and it's great to finally have validation. Please keep up the lovely work, Jessica

I love this video. It puts plainly what I go through. It is insanely frustrating dealing with people who may mean well buy just don't get it. I had a toxic person I've known for decades rant at me about disabled people not being a real thing, people in wheelchairs & 80 year olds being able to work, & I was unmotivated and will die because I don't take care of myself. I refuse to accept that narrative. He doesn't get to define my life experience. My body is complicated. I have systems that are linked causing multiple malformations all at once. It's fluid, literally. I have disregulation of the fluid in the middle ears, there goes balance. Hello vomiting. Meniere's Disease causes hearing loss. I have about 50% in each ear. But it also has inflammation to the tissue in the cochlea & surrounding the nerve. I get rushing water sound & go nearly completely deaf. It may also have high pitched ringing sounds. It may do that all but cut in and out, or I will be deaf for long periods of time. I also have disregulation of my nervous system. I have seizures & migraines. My brain has electrical zaps. Sound hurts my head. It causes pain. My heart does everything she describes. Mine also skips & pauses. Ouch! It is much better with the medication I'm on. This comes in episodes. I also have autoimmune disease which causes damage to multiple organs & triggers allergic reactions. I have walked into rooms with triggers in the air & gone into anaphylaxis. I have an epi pen at all times. My life is struggle. I get judged because I don't "look" disabled. I get told it's depression, anxiety. Try vitamins & essential oils. Do I meditate? I'm not trying. I can do part-time time, right? You need more exercise. I just want to scream!

I found your channel just when my weird symptoms were beginning to get unbearable a few years ago. It was the first time I heard about POTS and dysautonomia. I'm still working on an "official" POTS diagnosis, but it's videos like this one that helped me reach out to my GP to get into a cardiologist who was able to confirm my heart rate and blood pressure issues. Watching your videos was also one of the first times I saw disability talked about so openly. It gave me a lot of hope. I'm so grateful for the education and entertainment you give us!❤

Since I was a teen, I’ve had orthostatic problems and heat and cold intolerance. Then I got covid 18 months ago and it’s like everything was turned up to 11, with the addition of palpitations, chest pain, and shortness of breath. It wasn’t until I watched some videos on long covid and POTS and the POTS specialist talked about a “kinda POTSy hypermobile person” and I was like oh…that’s me, maybe covid just made existing things worse. Now I’m on a very frustrating diagnostic journey.

I'm in the process of getting my dysautonomia narrowed down (they suspect POTS, but I'm having the damnedest time getting a TILT test done). Thanks, as always, for making these things much easier to understand and explain to others.

I live in a tiny 3rd floor apartment with no lift. I have autism, MS and EDS. My joints constantly hurt. I strain my ankles on the regular. I don't have a bathtub, and my shower is to tiny for a shower stool. I know I'm not in such a bad situation. I get some disability money from the french government. I have a stable roof over my head and I can afford food. But sometimes I'm just tired of not being able to adjust my living situation to be more comfortable/reduce my pain... Thank you for letting me vent. ^^

I felt so seen at 13:26 when you put the rainbow of crisps lol. I have POTS and Narcolepsy and I crave salt all day. My sleep doctor diagnosed me by asking me seemingly random questions and one of them was 'do you crave crunchy salty things like chips?' and I was like hOw did you KnOW! This video was super informative, I didn't know that POTS was under the umbrella of dysautonomia! I definitely feel like loss of control is a huge part of it- pre-diagnosis I would beat myself up so much about sleeping through things and getting dizzy when I stood cause I just thought it was my actions/behaviors that were causing it. Thank you for always being so warm and positive, Jessica, and for sharing your experiences and insights!

The autonomic specialist neurologist I went to agrees with you, Jessica. He said tight clothing sometimes helps people keep blood in the upper half of their body instead of allowing it to pool at the bottom. He said some of his patients even wear stuff like Spanx, and find that abdominal compression helps them. (Personally, I have a lot of torso / core pain, so I cringe even thinking of torso compression. Severe fibromyalgia - every layer of muscle and fascia hates me, my guts and I hate each other, and I have enough dystonia in my core muscles that the pain & fatigue ramp up very quickly in my torso.) I did try mild to medium compression stockings for a bit, but I didn't notice a big difference in my dizziness or heart pounding. Drinking more per day and remembering to eat salt (or electrolytes in proper proportions for oral rehydration solution. Not Gatorade!) has helped. Exiting an extremely stressful home situation has let me sometimes have much lower stress levels. You're definitely right about high stress increasing the dysautonomia symptoms! Edit: Thanks for the tip about clenching muscles before sitting up in / standing up from bed.

I have autism and all i have to say is: Autistics 🤝 Folks with dysautonomia Light and noise Sensitivity

When you talked about the loss of control and the example you gave, it really resonated with me. I don't know if I have dysautonomia in any way (in the middle of a long diagnostic process) but I do have severe OCD (and three other mild to severe mental health disorders). So I can definitely relate to the feeling of loss of control. Going from the bathroom to the bed and back is also the only thing I managed to do most days for the last three years, precisely because it was a huge effort to me and would genuinely take me several hours, at my worst (which was quite often, really). P.S.: Sorry, I guess I just needed to complain a little. No one really takes me seriously when I try to explain that OCD actually interferes with my daily life (oh wow! Right?).

lol as someone who currently has an injured hip from getting a POTS attack in the shower, when you said "Showers. Terrible!" I felt that.

I've had symptoms Of POTs since I was 16 but only got diagnosed fairly recently. I found drinking hydration centered things (specifically liquid IV) is super helpful in addition to the extra salt. It's now part of my daily routine as it can mean the difference between fainting that day or not. (this may have something to do with me not being good about water intake so it might just be helping make up for that) also the shower chair has been a life saver!

My mom was finally diagnosed with MSA just as the pandemic hit here in Canada. It took more than 2 years after obvious multiple public symptoms to get diagnosed (she tried to hide her issues for quite some time before she went to a doctor)…she would faint in multiple doctor’s offices and they couldn’t figure out what it was. Some suggested it was in her head. There is a lot that goes into taking care of these issues…especially because each day can be better or worse and my mom, for example, does really get upset at not having control, so sometimes certain days are harder in dealing with those issues. It can be easier to “take care of the physical” because many people can do that, but the mental issues have to be worked out by the person. Helping is hard! Patience is needed by and for both sides.

Very informative Jessica as always

I also experience a bunch of these symptoms on a normal day. Shower chair and electrolyte beverages are a lifesaver for me. I have Dysautonomia due to a genetic condition so I've been dealing with this forever. So grateful for your videos, Jessica--they were super helpful right after I got diagnosed. Also gotta love the fact that this video is telling me that things I experience are part of dysautonomia when I didn't know they were. My mom always felt it was so weird that I didn't swear and now I have an answer!

I struggle with this. I was recently diagnosed with hEDS and POTS. It's been a journey for sure.

I think everyone is an agreement that we can all appreciate happy baby noises in the background lol, does not detract from the content, only adds to it Edit to say that I'm not even a baby person, generally don't like being around kids, but this l love

Rupert is the main charector of all y’all’s videos now and i’m here for it!♥️ The care I have from a tiny man whose face i’ve never seen and have never met in person 🙏🏻 youtube is such a weird place.

Remembering all the yoga teachers telling us to be aware of our breathing but not control it. Impossible!! 😵

Thank you! I didn't realize that my digestive issues were connected to my dysautonomia! I also have exercise intolerance, POTS, migraines, and many other issues. Connecting the dots when my symptoms have gradually come on over the last decade has been frustrating and difficult. You are such an inspiration, and help with the ever evolving brain fog!

Great video! I’m iron deficient and have a lot of these same symptoms. Long Covid is also possibly linked to nutritional deficiencies, especially iron and b12. It’s crazy how much Covid can mess you up 😬

This video screamed my name since my thermostat doesn't work in my body, and my heart is too small, so I always am too hot or too cold and falling over. Tons of fun. The GP's here say I have the medical history of a 70 yr old woman and I am not near that age lol

BATH TIP! Thank you. I always get in, sit for like a minute, get exceptionally dizzy and have to get out. I'll give this a go!

Jessica, there is definitely something “weird” going on with my body, and it’s been going on for a long time. I live in Sweden and am struggling to get appropriate health care, including any interest in determining a diagnosis. My current doctor has decided that extra doses of vitamin D along with any available all-round daily vitamin will cure all my ills!!?? So, having established a minimum of background, I move on to the point of this comment. Which is, THANK YOU, THANK YOU, THANK YOU for your videos which continually give me incentive to pursue my own well-being even through the challenges of the Swedish health system, (which I bless more than rue - the health system, I mean), and which always bring a smile to my heart. You, Claudia and Rupert are a blessing to many of us. Thank you all for existing!

Ah yes, fun with blood pressure. I wasn't diagnosed with dysautonomia until 2021. I've had (most if not all of my life, worsening with age and after COVID): heart arrythmia, very low blood pressure, difficulty regulating my body temperature, loss of feeling in my hands and feet, dizzy spells especially after standing, attacks of severe nausea and chronic lack of appetite, random chest pains, heart palpitations, frequent need to pee, and trouble sweating. And you know, there's a LOT of symptom crossover there with ME/CFS. Interestingly, drinking a lot of liquid makes my dysautonomia *worse*. I'm apparently flushing my electrolytes out faster than my body can produce them, so these days it's 1 cup of coffee, 1-2 cups of water or juice, and that's it each day. My management includes electrolytes (powdered salt, magnesium, potassium mixed into water) at least once/day, putting my feet up whenever I sit down (or lying prone when I rest), corsets (technically it should be compression garments but I work with what I have), hot showers and not baths (soaking lowers my blood pressure even more, which has led to temporarily paralysis, increased fainting, and vomiting), and eating 2 meals daily at regular times (so my body doesn't go into a tizzy, thinking we're starving).

Me: being dizzy everytime i stand up too quickly and when i move my head, or when i lace my shoes and feeling my heart beating everywhere in my body and having regular migraines. Also me RN: what ? It's not normal ? 😮

So many things to now think about. I suffer from bouts of low blood pressure I will be going about my day, when "BAM" I'm on the floor. Good advice about getting things moving before you get out of bed and also drinking more water. Thanks Jessica. Loved hearing Rupert in the background. Hope you are feeling better soon.

Temperature regulation is such a weird one to manage, I've been in a 73°F house in the middle of summer and been so cold I had to step out into the 100°+ heat to warm myself like a lizard

I was diagnosed with dysautonomia not long after being diagnosed with CRPS in 2013. I think it’s gotten worse over the years. Pure exhaustion and dizziness are the symptoms I experience the most. I’ve been amazed by the number of doctors and nurses who I’ve had to explain dysautonomia (& CRPS) to, but it has been slightly better lately. I think it’s finally being taught in medical schools, thank goodness! Little Rupert blowing kisses and babbling in the background is just adorable 🥰

The biggest perk of creating a channel: having videos to point people towards, when they really just don't get it.

I got a shower chair a few weeks ago because I got COVID and my dysautonomia flared HORRIBLY and even though I’m back to my baseline(thank gods) I freaking adore it. My POTS is well enough managed that i don’t *need* it, but it is SUCH a game changer.

I have POTS and I have to say it has SO many different symptoms like way too many I can't keep up with all the crap my body pulls on me. It's just absurd how many symptoms I can be dealing with at one time.

OMG, i’ve watched several of your videos now and wow I’m just blown away you really get me!! LGBTQ, history geek, disability rights advocate! Love your work, saving my life right now. Thanks for sharing everything you do! PS, i’ve never commented on a video ever before and I watch hundreds of thousands! ☮️💜🙏🏼

I will always enjoy happy baby noises in the background. Go Rupert!

I've just been diagnosed with dysautonomia and you post this video. For some people getting a diagnosis is harder. In my country for example, it is very rare to be diagnosed with this condition. Plus, other people don't understand why I can be riding a bike one day and unable to work the next. I highly appreciate this video because it speaks to a huge truth, the feeling of not knowing what kind of day one will have is quite hunting.

I have Crohn's and no one has ever been able to offer me any suggestion as to why I have low blood pressure, feeling faint when standing, vertigo, temperature sensitivity... This has suddenly made everything make sense!

Wow, It's nice to hear my diagnosis in the wild. I need to explain whenever it comes up. Primary POTS and I think reactive vasovagal? But of course both make me faint so its hard to tell lol. Its always easier to say I have a 'heart thing', even when what I have is a neuro problem not a heart problem, its just the quickest way to get the idea across. Its also very validating for me. Despite having my diagnosis for a few years now, its hard not to feel like 'I'm just not trying hard enough'. I can do things... but I also can't. (like eating more than one meal a day lol. My body doesn't like that.) I don't have it so debilitating, but day to day it wears me out. I haven't fainted in years, but I still feel every effect. I know I need to listen to my body more, but sometimes the unhealthy brute force is the only thing I can do. (Add ADHD into the mix and sometimes even that doesn't work). I wasn't sure if I was the only one that couldn't deal with some noises. Usually repetitive, grating, siren like noises. (Which is disappointing because I like the song 'O Superman' but I can't listen to it without being dizzy.) Tight clothing does help, primarily compression stockings. My legs pool badly without them. Idk, I'm still figuring it out. About to graduate uni, so I can't be doing to badly. (though the uni lifestyle of not great food nutrition or sleep probably doesn't help) Having a lemon body is very frustrating. So thank you for spreading the knowledge. And for the venting lol.

Please do a video on accommodations for the disabled and chronically ill, at least for your needs anyway. I'm returning to school to become a librarian and want to know what I can do to give proper access to patrons.

Well this has actually answered a lot of questions I've been having after I had covid. Mostly "why is my body doing x thing now?" Thank you very much, I will definitely be having questions for my doctor when I go next.

I am in the midst of getting a dysautonomia diagnosis and just got tested for POTS, so this video coming up in my notifications made me very excited

I have cerebral palsy, and dysautonomia has been *theorized* based on information from nonverbal patients in us, and as a verbal patient, I can tell you - I can't regulate my body temperature for shit, my brain doesn't tell me when to pee, if I get too fatigued or stressed I'm liable to go white, dizzy, and headachy, and during quarantine I've begun to get vasovagal syncope in times of chronic illness flares. So yes, I do have dysautonomia, thanks for NOT ASKING THOSE OF US WHO CAN TALK.

Thanks for making this video, and ones like it you've done in the past- I went for years thinking that all my symptoms were normal, I just needed to "deal with it like everyone else." Your videos helped me realize that there was a name for the things I experienced, and now I'm on a slow, but moving track to find proper care and diagnosis. Thank you :3

Hearing your little man joining the conversation in the video lifted my soul.

I love the listing of your relatives in the NHS turned from you telling us to you telling Rupert, that was super sweet!

Could you do a more detailed video about keeping a health journal please?

Thank you for this excellent video on dysautonomia. You're tips included a few that I will incorporate, especially the getting out of bed and getting into the bath. Sending you love, Jessica! 💜

💕Wonderful information! 💕 So important since there are such a large number of new dysautonomia suddenly with long COVID. 💕 Sending love to you all.

I went and looked at the NHS, your in England. I thought I found my possible entry back to work since Long COVID. I really want my life back. Thank you for this amazing video.

I had Covid in December and now I get out of breath too easily, not to mention the chest pain Rupert chiming in with his cute noises was so cute!

Pretty sure I have this from Lyme disease, but didn't know it had a name. If it's just nice to know about it. And I a agree something about hearing my heartbeat makes me anxious.

If you're in the US where baths are too small/expensive then shower chairs are super helpful! Or just sitting on the floor. That's fine too. Try turning the temperature slightly above what is ideal for you standing.

I'm always happy to watch another video of yours on those general struggles, I've been struggling with /something/ for the last 12 years or so, but progress in getting professionals to understand is really slow. It is complicated when you have both mental health issues (Depression and ADHD diagnosed, Autism suspected and on waiting list, which only partially explain the mental symptoms of: mood swings, irritability, anxiety, hyperactivity, hyperemotionality, memory issues, constant stress, circling thoughts, etc.) and physical symptoms that are not THAT extreme but also kinda common on their own or in lower frequencies (headaches, dizzy spells, fatigue, trouble sleeping, trouble getting up, very low fitness, lack of energy, terrible temperature regulation, trembling, hypersensitivity to noise and lights, balance issues, proprioception issues, high pain sensitivity, sensitivity to sunlight exposure, reduced awareness of physical needs like hunger, as well as issues with menstruation). As I said, it's complicated. And now, I wasn't able to type this up, I copied it from a list I made over a long time, memory issues, you know. Now combine all of the above with an emphasis on the struggle to maintain such a thing as a journal of my symptoms (because ADHD [routines are hard, judgment of own symptoms is impaired] and memory issues), the struggles in communication connected (for many) with autism, as well as the stress and anxiety in the moment at a doctor's office after having gone through the hellscape that is public transport and waiting rooms into a far too bright environment with a ton of new inputs ranging from the doctor's family dog's picture on the shelf to the smell of the disinfectant - it's nearly impossible for me to get them to understand. I don't know to what degree it is a discrepancy between my communication (I don't exaggerate symptoms, I go to the doctor only if it has to be) and other people (some of whom go to the doctor over literally anything and will list all their sensations as potential symptoms, vastly exaggeration; at least from what you hear doctors and nurses complain about) and to what degree it is my doctors just simply not knowing what could be underlying and connecting my issues. But the most frustrating thing to me is that they don't understand WHY I'm still coming to see them after 5 times of them telling me they don't know what else to test for - even though I've told them very directly: If there is no way to heal or lessen my symptoms through medicine, I need access to social support networks for the disabled and chronically ill. That way, when I eventually am in a position where not being able to work for months at a time doesn't "just" make my master thesis have to happen faster, but actually makes me lose a job or unable to find one, I do not have to starve. That'd be lovely. It's unbelievable how often I've said it and how they're still not seeing it because it is invisible, I'm a student, I work at my own pace and in home office (regardless of the virus) because social anxiety and going to a learning space or library don't exactly mix well. I can write my papers from here. I can also spend a month or two TRYING to work from here. But I have good grades, I'm managing somewhat okay so far, so the doctors don't take me seriously when I say I've spent the last two months at home unable to work despite REALLY wanting to. They send me to mental health. My mental health team continues to treat me for the parts they can as best they can, but it's not enough. At least now I've finally gotten my therapist to look into signing me up with our social support networks on the basis of my mental health conditions. Maybe she'll actually get it done, maybe I'll eventually get a doctor who has heard of these symptom clusters before and will give me some diagnosis, because the unfortunate reality is that no diagnosis means no access to financial or physical aid. I live in Switzerland. We have it good. But not good enough. There's room for improvement and I fully do intend to work in the field of social support for those who need it once my education is done. Maybe not right away, maybe it'll take a few years of other experience first. But going through these various labyrinths trying to get support as somebody with physical issues, with mental issues, and without parents able to pay for my education, I am intimately familiar with the system and its flaws. And I want to help make it better. Dear goodness this is a wall of text, my apologies to anybody who read it and now feels they wasted their time, but it'd be a shame to delete it now.

Yeah, before it was actually being talked about being part of long covid, a lot of people in my EDS support group were already saying, hey, did not have POTS before but after I got covid it happened.

I have this too :( the tachycardia has been getting worse lately. It's so discouraging and depressing sometimes

I have POTS and NCS and I really hope the increased attention to dysautonamia will increase research and treatment options.

Talk about timely. I've only just worked out hot showers send my BP through the roof, and cooling off sends it through the floor. Several months of feeling faint, almost hitting the floor at work, and sweating bullets while peeling vegetables suddenly makes sense. I'm taking my stories to my doctor and specialist this week. Good to know there are ways of managing it. Thank you!

I'm a nurse and I think you explained very clearly and simply what dysautonomia is and why it happens ! Always a pleasure to watch your videos (and also I'm french and I think your accent is deliciously british ✨ that's also a pleasure to hear)

My good friend Rena was diagnosed with this unfortunately. She's changed a lot but I wish her a speedy recovery every day 🙏

hEDS-related secondary dysautonomia here! I have the particularly wild symptom of autonomic dysfunction where my brain sends out waaaaaaaay too many extra electrical signals to my body - and especially to my heart. Because of this, I developed a non-Tourettes tic-like movement as an adult as a part of dysautonomia - as well as a heart condition I may need surgery to correct, to stop it dancing around with all the extra heartbeat signals it gets xD I sort of feel lucky that this weird symptom may be correctable with surgery, though, since so few symptoms of this condition are fixable. Anyone else here developed particularly weird dysautonomia symptoms?

Rupert's voice was a lovely addition

Thank you so much for this video!!! I had Covid in December of 2020. My boss kept encouraging (threatening!) me to get back to work as quickly as possible, and to continue to push through my shifts even though it would take days and days to recover. I believe this actually made my condition worse. So important to listen to your body.