I was diagnosed with a chronic illness... here's how I handle it
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- čas přidán 2. 06. 2024
- Hi butterflies!
I filmed this video about six months ago, but haven't had a chance to upload it. So, here you go. I've recently been diagnosed with POTS, here's everything about it.
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More videos about POTS would be great. I’m on the verge of being diagnosed with POTS (and autism) and it would help me and many others so much! Thanks to you I know what POTS is and where to go to get the proper treatment!😊
Same! Got diagnosed with autism last year and my doctor is investigating POTS as the cause of my medical issues currently, hope your journey goes well!
@@ferndoesart4734 Thank you, I hope yours does too!✨
Yes, please do more about it.
Hold up… i might have POTS. I’m autistic and have ADHD, and have been struggling with many symptoms of POTS since i was about 14, I’m 18 now. about two years ago, i suffered a serious tachycardia episode, and since then my symptoms have progressed onto shaky legs, headaches, shortness of breath, stomach cramps, chest pain, jitteriness, faintness, weakness and fatigue. Currently I haven’t been diagnosed because just like you, all of the doctors said… yup, it’s anxiety, despite having multiple tachycardia episodes that had me hospitalised, I couldn’t do much about it because well… “doctors (apparently) know best”. Imma go talk to my doctor about this ASAP.
finally diagnosed with POTS after being pretty sure I have it for years. a lot of what you're saying is on point!
POTS also has correlations with EDS, joint hypermobility and other autoimmune issues as you said. also a relatively high crossover with neurodivergence in general, not just ADHD.
The cardio I see recently wrote a book (Foggy, Faint, Fatigued & Adrenaline: It's Not in Your Head by Chris O'Callaghan) and it is absolutely fascinating! I highly recommend reading it if you haven't already!
Sorry to hear you struggle with this too, thanks for making a video about it! I was diagnosed with POTS/autonomic neuropathy in 2020, and have suspected ASD & ADHD. If you haven't checked it out already, have a look into hypermobile ehlers-danlos syndrome, it's highly comorbid with POTS and ASD. It's a connective tissue disorder so can cause a huge range of issues (muscle pain, joint problems, neurological problems, GI, immune, endometriosis etc)
We have the same things going on! I was going to say that too!! Also gastroparesis and mast cell activation syndrome go hand and hand with everything you mentioned! Also did you hear Halsey was dxd with Eds, MCAS, and POTS? I feel so bad for everyone going through this amidst covid, y’all have my support and I’m here if you wanna vent or have questions
@@MandieZangora I only just saw this sorry!! Yes absolutely GP and MCAS are a part of the bundle, I feel like EDS is a buy 1 get 5 free kinda condition lol. I did hear about Halsey, so cool to see it becoming more well known! Hopefully we can get some more awareness and the diagnostic process will ease up a little, I've been trying to get everything properly diagnosed since 2020 and have seen about 40 practitioners so far. Thank you for being supportive 💙
I heard that EDS can be commorbid with a lot of things including systemic mastocytosis which is what I have. Doctors thought I might have EDS and, if I remember correctly, POTS because of SM. And yeah I also heard about Halsey. So glad that things like MCAS is getting more recognition. Feel bad for her though
Hi Chloe! I'm autistic and am in the process of being diagnosed with hypermobile spectrum disorder/ehlers danlos syndrome. Thank you for sharing your story! Living with any kind of chronic illness or pain is difficult.
I just got diagnosed with a chronic illness last week after years of not going outside of the house and convincing myself it was "just my anxiety disorder" and now struggle with my anxiety telling me I actually don't know if I struggle with everything I'm experiencing... safe to say, this video helps a lot, thank you
Thank you for this!! I very recently learned what POTs was and freaked out because I had every symptom and it explained EVERYTHING. I've gone to doctors so many times about my dizziness/fainting as well as my chest pain and poor circulation over the years and they told me it was just anxiety. I have no idea how it's gone under the radar for so long because every time I get my blood pressure checked the doctors are confused about why it's so high (and then proceeded to not do any tests or refferal and blame my anxiety) when that is SUCH A HUGE symptom of POTs. I'm trying so hard to find a good doctor that will listen and take me seriously so I can get diagnosed or potentially find out if its something similar!
You should look up this article: The Prevalence of Comorbidities in Autism: Consideration of Comorbidity in Intervention and Treatment Response
Wauw:o im realy happy that you now know that you have pots. The knowing is something that can realy help alot is what i have noticed:). Im also realy curious to learn more about it so keep the content coming:D.
I can relate to this so much. I was diagnosed with PoTS but didn't realize how big of a deal it was until later? Because no one told me anything 😅 (also, gaslighting...)
I'm also autistic and have ADHD, and am surprised to hear there might be a connection. It's so cool to know others can understand what its like! Thank you for this video 💜💜💜
Thank you for making this!!! I've been diagnosed for years and feel so alone with it. I would love to see more POTS content especially from another horse rider!❤️
Definitely would love to see more education and awareness on this condition! I need to test for P.O.T.S and hEDS so I'm all here for it especially since learning about this stuff falls under my special interests 🧡😌
Yesssss please!!! I’m autistic & adhd too with C-ptsd, and my nervous system does things that I don’t understand. One doc in emerge told me POTS could be it once, but any tests I’ve done have said otherwise. Whatever it is, it’s related to my vagus nerve and stomach which often is related to POTS from what I understand.
Unfortunately I live in an isolated area of Canada, and finding a good doctor here is near impossible. My current one is very misogynistic and dismissed my autism assessment as panic disorder before it was firmly diagnosed... I’m looking into a new functional medicine nurse practitioner here but I’m not sure I’ll be able to budget it in!
Thank you for sharing 💛💕✨
Hey reading your comment i wanted to share some information i hope will be helpful to you. I'm autistic and ADHD, and the primary caregiver for my partner who has c-ptsd, gastroparesis and pots. We just got some new information last weekend during a hospital visit about a condition called Central Sensitivity Syndrome or CSS. I'm not a doctor or any kind of gealth care professional, but I've seen firsthand the difference having the right medical term can make in doing your own research. The BC women's hospital + health center might be worth researching as well given that you're in Canada
@@AnarchyDefender thanks for sharing! I’ve been recently questioning if I have fibromyalgia as I have most of the symptoms, and that’s one thing that popped up when I googled CSS. Unfortunately making it to Vancouver is a cost that I can’t really do at this time, but I’ll still look into it!
‘Just as mundane as ‘were going in another lockdown for 2 weeks!!’ ‘ 😂 victorian things✨ congratulations on ur diagnosis!
Lmao victoria vibes
Chloe, I think you do a really good job at managing your POTS👍👍💖💖💖💖!! I know what it means to have chronic illness and chronic physical pain. I have Raynaud's disease so for me being out in the cold weather turns my hands terribly black and blue, arthritis, interstitial cystitis which is a disease of the bladder walls, spells of chronic diarrhea that can last for months, spells of severe anemia, adult on set scoliosis in my upper back, and a herniated disc with sciatica pain in my lower back. And I know what it's like for people to say, " You don't look sick" and when I weight due to my diarrhoea a nurse was screaming at me and treating me like a mentally ill. There are many people that are older than you that have trouble managing chronic illness and for somebody as young as you to manage your POTS well so well it's impressive!!! Chole, you are a strong person a kind, understanding person! If only other Neurotypical people like myself were as kind, fair, and understanding like you we'd have a much better and more balanced world!!!🌏🌎🌍💛💛💛💛💛!!!
While I know PoTS is challenging, thank you so much for making this video. I don’t “technically” have PoTS but instead have been diagnosed with “generalized dysautonomia”. After 10 mins in the tilt table my HR was 18 above resting, at 12 mins my HR was 54 above resting. I also have ADHD, EDS, and narcolepsy and I suspect I am on the spectrum.
This is so great! I was diagnosed with anxiety by 3 doctors until I finally got my pot’s diagnosis
I am honestly so happy I clicked on Heartbreak High last night . I instantly fell in love with Quinni and knew why the moment she (you) said "I'm autistic". And finding your channel and realizing that you're super open about your real life mental and physical heath means alot. You're amazing and beautiful.
EASILY the best video I’ve seen on this- so helpful and so validating. Thank you Chloe
Have Pots and Ehlers Danlos syndrome and endometriosis and live in the Tropics! My ex husband has been alienating me from our son as he doesn’t want to understand my situation. Thank you Chloe !!
I'm super interested in more Pots things! I'm still in the process of (hopefully) getting my diagnosis, but I am already slowly trying to adapt my life more to my physical symptoms. I'd have quite a few questions I think you could perhaps show your perspective on, especially because you're also autistic.
Things such as going out, what to take along, are there any conflicting coping mechanisms between autism and Pots? For example sitting down when on a walk, while also wanting to be home as fast as possible because of a near sensory overload. Have you found a way to figure out which one to prioritize in that moment?
I've got a million questions swarming around in my mind at the moment, so yes! Definitely interested in more videos.
It's pretty cool actually. Once I got my autism diagnosis three years ago, you were there, and now that I am starting to look into Pots you are there too! I suppose that warrants a massive thank you☺️
Lots of love from the Netherlands♥️🦋
I’d love more POTs content!! I heavily relate to a lot of your experiences/symptoms and would love to educate myself more in case I do have it and have to advocate for myself to a healthcare professional. Congrats on getting the answers to a long term condition!! Being dismissed for so long definitely creates deep psychological impacts, so I’m glad you were taken seriously.💓
I have autism, POTS, ADHD and have Ehlers Danlos syndrome, gastroparesis, etc (which have researchers thinking that they are related) and I had the same thing happen in the US with drs telling me my pain was just in my head so as a literal child (13) I believed them which turned in to multiple mental health issues like self harm, depression, and an eating disorder. Fast forward 10 years and I was finally correctly diagnosed and trying to figure out how to deal with all of it and it’s comorbidities. It was hard and I’m still working on it but you’re not alone and there are a ton of us to welcome you to the community and help show you the ropes 😘♥️🫶🏻
I have POTs and was diagnosed years ago. I'm sorry it took so long for you to feel you had to get help. I'm so glad you did because treatment is so important! Wishing you a nice few winter months!
Thankyou for the video, it is so important that the fact that chronic diseases can occur in people are neurodiverse. While I do not have POTS I appreciate the openness you have in sharing.
There is another condition I have observed as common among autistic women is PMDD a severe form of premenstrual syndrome and often ignored or misdiagnosed in the Autistic community.
I've known about my POTS for a long time, but you've given me new language to explain it to other people. Thank you!! Describing how our hearts beat like we're running in place is super helpful. Also had a similar experience being told that my symptoms were anxiety. And to echo other people in the comments, ASD/ADHD + POTS can sometimes indicate hEDS.
Thank you so much for making this video. I was diagnosed with both juvenile arthritis and crohn's disease when I was just three years old. On top of being adhd and autistic. That's quite a lot but I manage. It's good to get some representation of chronically I'll neurodivergent people and I'd definitely live to see more of it. Great job, Chloé^^
I was just diagnosed in February, 3.5 years after the onset of my symptoms! I used to work at Disney World but I currently can’t work due to POTS. But since starting medication and being able to dedicate myself fully to the CHOP protocol, I’m hoping to get back into working by the end of the year :) I’m finally starting to feel healthy and strong again!
I’ve been watching your videos for years and love your vibes 💖 I had a late diagnosis of autism a couple years back and I was always watching your videos. I’m recently diagnosed with POTS and just came across this video of yours now. I started watching heartbreak high and was like “wait that’s Chloé!!“ and went on here to double check 🤣 I relate to you so much and I’m so happy you’re doing great things! Truly an inspiration 🥰 I thought my POTS was anxiety as well and dismissed it as that for so long until I was tired of not being able to do things I love.. I’m happy you’re figuring it out 🥺💖 eat your salt!!! It helps with POTS symptoms.. I’m hoping there’s medication out there for me but bc of blood pressure I can’t do beta blockers.
Happy Monday Chloe 🙂
At the beginning of last year I got diagnosed with POTS and fibromyalgia… at the time I thought my body was dying because I was slowly losing the ability to function… and then the doctors basically said there was nothing that could be done?!? Ugh It’s so good to see you talk about this, because it’s so hard to explain to my friends why I can’t function sometimes… still looking for solutions but slowly learning to manage symptoms and learn to just listen to my body and just stop 😥😩
Thanks for starting the conversation here! ❤️🔥
There is medication for both conditions, please keep trying drs until there is one willing to give you appropriate treatment.
i'm also an australian autistic with pots !! :D thank you so much for the video, chloé
First one on the video.
You are awesome, Chloe!
stay strong, my love.
Hi chole, I recently had a heart scare last week and to the best of my knowledge I have autism. Your video has pointed out some of the symptoms that I have. Thank you for making this video about p.o.t.s
I'd love to see more on this. I know POTS is often comorbid with Autism and ADHD and I am on my own long journey seeking answers to undiagnosed medical stuff/hospitalization and am also undiagnosed (but exploring) Autism/ADHD so this is all relatable content to me and I think many others!
thank you for sharing your story ❤️
I totally get it and I have similar symptoms just different diease. I found out at the age 21 I was suffering from Fibromyalgia for years before I knew what was going on and thankfully it only took me three doctors to find out what was wrong with me. I’m 24 now and none of the medications that are offered to treat fibro can safely be used on me (i had a terrible reaction to the weakest medication offered and went into psychosis from it) so since my doctor said I wouldn’t be able to take the other two which are even stronger i pretty much can only manage my fibro by managing insomnia, depression and anxiety (which thankfully I did find a medication that worked for my insomnia and it some-what tamed my depression and anxiety enough to function better than before) which all three of those mental disorders go hand in hand with Fibro so it helps to manage those which lessons flare ups. ofc exercise such as yoga and swimming helps a lot especially swimming which cools off my body and yoga really helps my joins (but only so much), but just managing symptoms instead of the whole disease because I can’t handle the actual medication for Fibro, really sucks because i can only be active so much because I’m always in pain and tire easily. At least i now have a name for my disease and its easier to help people understand why i act the way I do (ive had a lot of negative opinions against me such as “you’re on drugs” when I wasn’t “you’re just lazy” when i was exhausted and fatigued from just normally moving or maybe lifting a box that was only 10-20lbs, etc) but it still is depressing knowing I am always going to be in pain, tired, sick, and ofc all the other symptoms from fibro fog and people will always judge me before they try to understand. I have similar symptoms as you and i only hope the best for you and I hope one day people will stop saying its all in our heads and that we are this or that instead of acknowledging we are sick and need medication to get through life and there’s nothing wrong with that and I hope one day ppl will understand that some of us just need better care than ppl who don’t suffer from any chronic health issues and that doesn’t make us weak or broken or weird. I struggled with keeping a job and hopped around a lot bc of my depression anxiety insomnia and heat intolerance was effecting my ability work in fast food (which was all The jobs I can get around my town unfortunately) but now that I can actually explain my illness and the short comings involved in it, It’s a lot easier to hold down a job. Some places straight up don’t care about me and that’s whatever, but thankfully I was able to find a place I was comfortable at and they don’t treat me like I’m a problem or a nuisance ❤️
I have fibromyalgia as well! I’ve had symptoms since I was 10 or 11, and just got diagnosed at 26. I also got psychosis symptoms from the first medication they gave me (Cymbalta) so now I’m just back to treating with lifestyle management. Wishing you well on your journey!
@@k74728 you as well. Mine was amitriptyline and I’m pretty sure I had symptoms around the same age as you did I just always thought it was normal until I was 18, but wasn’t sure what to do about it until I was 20 and it took me another year and going through three doctors to diagnosis it. I had a male doctor out of three that wanted to give me wayyy too many medications than I needed and blamed it all on my lady bits do I dropped him pretty quick. Thankfully I met a very nice and understanding female doctor who believed my symptoms were real and helped me figure out what was going on. It’s just unfortunate no medication that can help pain will work without causing serious mental decline. Im thankful for the meds that manage my insomnia and mental health, but it really only goes so far for my physical health and like I said being active is a lot harder for me. I just got a bike so i hope i can start going to the beach and gym more often.
Thank you for sharing Chloe! Yes we'd love to hear more as we POTSies are all managing and having to make sdjustments daily. Same here, 'anxious child' with Raynaud's (purple hands/feet). POTS put me in hospital on IV last month for tachy/hypokalemia+hyponatremia while on an antibiotic. It is a relief to have answers, but nonetheless tricky to navigate esp. with ED recovery for me too. Take care and let us know if you find some cute compression gear!
I for one would definitely be interested in more POTS videos, as I'm pretty sure I have some form of dysautonomia too, although I don't think it's POTS because it seems to be more related to my blood pressure than heart rate. I've had symptoms since around the time I started puberty (13, I'm 19 now) and have fainted about 5ish times in that time period, and had lots of near-fainting episodes too, almost always due to exercise or hot temperatures. Every time it has happened though my GP has said its just low iron levels :/
I'm not sure if I should say "congratulations" for an illness but taking in consideration how hard it is to get a POTS diagnosIs, congratulations! I'm pretty sure I have POTS, like I was sure I had a ton of things that took me years to get diagnosed before.One battle at a time, I guess.
I had gone 21 years undiagnosed with a chronic illness. And when it was diagnosed it made so much sense! Except to my brother. I was diagnosed with *drum roll* chronic gastritis. It makes sense to me in all the symptoms. I had never experienced the worse symptoms until recently but it still made sense in other ways. Except of course getting an official diagnosis through a biopsy. So a pretty rock solid diagnosis I'd say. It also made sense because it can be one of those genetical thing. Like a parent has it so do you. And my dad suffers with the exact same thing.
As stated above my brother was confused. He told me I had surgery as a baby to fix just that. I told him actually no. I had hiatal hernia surgery as a baby. But that doesn't mean my stomach is no longer irritated. Maybe I won't experience hardcore reflux (spoiler alert: my stomach hates me now). But I will still experience the rest of the worst. Like being nauseous sometimes at the sight of food. Or getting nauseous if I either eat too much or if eat too fast/too slow. My throat sometimes feels like I've been screaming for ten minutes straight due to the reflux. Sometimes I feel so bad I don't even want to eat. Or sometimes I subconsciously think I'm going to get extremely nauseous by what I'm about to eat. Or because of my adhd I'd mix up foods because my brain tells me I'm hungry. Then my body decides it needs to have a word with the manager and scolds him by making me nauseous itchy before dinner. So sometimes I'd tell my mom to wait a second before we eat dinner so I can let my body partially digest my snacks so I feel less horrible. Sometimes I feel so bad I take my safe medication too much. When I could've waited for my body to digest. But I feel so horrible like I can't even get up and do something that laying down waiting for my body to digest doesn't seem feasible at all. Also I wouldn't be able to work in such conditions as regular. Luckily I have a doctor's visit next Tuesday to try and find something to help my poor state. And maybe find an effective medication that won't make me gag before I eat.
Thank you, Cloe. (I'm sorry my keyboard refuses the accent).
I'd say that I hold a lot of these symptoms - diagnosed with MS.
Safe to self diagnose adhd and being autistic, based on diagnosis of children.
I would HIGHLY recommend going to a doctor for Bio-Feedback training! It has helped my POTS and other conditions/issues so much. It has helped me learn about how my body works and how to work with it rather than against it. I’m not sure if you have the option there, but if you do I’d recommend trying it! The doctor I see wrote a book about it, but it’s more for doctors than patients.
great video, I would like to see more POTS videos as they will be an opportunity to learn but also because it can if i understood right something that one can suddenly have and not jsut be born with
I'd love to hear more about POTS from you!!
Hey I enjoy your video I have pots too 10 years so far iv liquid helps I spend a lot of time in the hospital the other things that help is special compression socks, and drinking lots if liquids. Please keep the videos coming and also vlogs of days when u have a flare
ive found it so difficult to deal with my diagnoses (i have 19) and it’s so stressful to deal with the fact that i have to live with this forever
Luv u chloe!!
My and my mum are looking into me potentially having POTS (unfortunately my GP doesn’t have any appointments free for like 6 months). Thank you for this :)
You're doing a very good job Chloe. May I ask a question, what's the most challenging part of dealing with Pots?
Thing is both POTS and PNES used to be called fake but both are both mental and physically linked and coexist with mental health struggles or adHD. I recently was diagnosed with PNES that I rarely experience unless highly stimulated and hyperactive mixed with stress, heat or drink.
Hi chloe
i am a female and today i was diagnosed with autism. When i was younger i was diagnosed with Verbal dyspraxia.
I abslotely love your channel and Your videos. I'm a huge little mix and one direction fan just like you.
love you xx
Reply soon
Can definitely relate with being told it was just my anxiety
I have chronic illness probably something my stoke is masking some things that have helped me
- following a bunch of disabled creators
- pill pots , help with memory issues do you know If you have taken them
- mobility aids , you get wired looks from old ladies but they are fabulous for low energy days (personally I have mobilty scooter , and tada stick, walking stick with fold out seat )
- not doing energy absorptive chores I'd you don't have to because in my experience it's quite limited I attempt to do something fun with my energy , not always easy tho
* so not di
...I think I now know what’ been going on.... I work out and I get fatigue, shortness of breath, nausea and heart palpitations... it would also explain why I’m always in pain
If you haven’t already you should check out the Frey life ☺️. Mary has cystic fibrosis and deals with chronic illness. It’s not the same chronic illness but she’s also Christian and just is an awesome human being ☺️.
Great video . Make more POTS please !!
Hey Chloe, My Mum and I have POTS, we are both in wheelchairs, we're both in Australia as well, but I can relate
Pretty sure I have had this most of my life. It seems to come and go though. The pulsometer that came with my phone has been quite an asset
Oh the 'oh you're just anxious'...when I lost an f-ton of weight and had nausea and diarrhea so badly I was incontinent for a month, the 'doctor' told me (I was a professor at the time) that 'Maybe your job just is too hard for you, you're overstressed'. Turned out I had an intestinal parasite infestation. I don't think she would have jumped to the same conclusion if I wasn't female
Yes Please! :)
How did this affect you while acting? What did you do to cope, or what was changed to make it easier? I have pots and standing for more than 5 minutes is a big trigger for me, so I'm wondering how you faired acting for who know how many hours a day.
G’day chloe! I was diagnosed with pots as well as my youngest, two years ago. I was 52!
I had been living with pots since I was 10! So i SSSOOO understand what you mean!
Just found out I had autism this year! Just like my youngesr child too!😳😂👍♥️♥️♥️
I have POTs, ME, fibromyalgia and I'm waiting for an assessment for autism
Thank you for this! As much as I have grown to detest the word awareness (thanks to the stress of April), for POTS it is still sorely needed.
Love you
Taccicardia is so scary when you don't know what's causing it , congratulats on surviving and finally getting a diagnosis :))
I find it so interesting that this is SO co-morbid with Autism, I don't know of many people with POTS that don't also have Autism
HEYYYYY I HAVE POTS TOOO OMGGG
More POTS videos!
Oh my stars i am a Potsie!! I also am in the process of trying to get my diagnosis for being autistic , i only didnt check off 12 out of 300 on my dsm assignment given by my doctor😅😅
hey lovely Chloe i love you so much
Lol same I definitely aggree with the intro
I just know that I am phobic social and surely schizotypic.
I’m wondering if I might have this too
i’m autistic and have pots too :)
Hi 👋 Chloe I would like to ask you how many People with a disability drop out of School or make it to College?
No, I doubt it's psychosomatic cause, I'm aware there's a great many medical issues; which often can coexist along with autism...
i have almsot all of the symptoms of pots but i just did the standup heart rate test thing and my heart rate only went up by 15 when standing not 30. i'll have to look into it more i guess
maybe look into orthostatic hypotension. they have the same symptoms
@@AutiSpace Thankyou so much!! I will
OMGGGG I HAVE POTS TOO 😭
I never knew there was such an overlap of ADHD and POTS. Good to know I'm not am anomaly!
I have to put you at .75 to even understand what you are saying. So most people talk at .75 your speed. SLOW DOWN.
She has ADHD, people with ADHD tend to speak too fast and we can find difficult to control the speed and volume
One of my favourite English people has some videos on pots that might be useful for you:
what it is - czcams.com/video/1etxgERhkDg/video.html
Do u have it - czcams.com/video/0AQ6lKR4Hug/video.html
♥️♥️♥️💓
So are we the same person? Diagnosed with pots and an eating disorder. Now in assessment for adhd and autism :o
Hey beautiful I also have autism ADHD OCD
Those symptoms sound very suspiciously like those of Long Covid. Wouldn't surprise me if POTS can at least sometimes be cause by COVID-19.
For those mechanically-minded viewers like myself, would it be fair to say that your body is like an engine where the idle speed has been set very close to redline?
POTS can absolutely be a long term side effect of COVID-19, one of the most likely times to get it is after becoming very sick!
POTS is entirely a neurological part of you, so not all that different from the fact that autism and ADHD are neurologically ingrained. The only thing that is different is that autism and ADHD are always originated in the early neurodevelopmental period. It's a disorder of the autonomic *nervous* system, as you said.
Nurse here. Excellent review of the medical stuff.
I'm just gonna ask that you fact check what you said about your heart rate being at least triple that of a healthy individual.
Average heart rate is 60-100bpm. If your heart rate is an average of 180, something other than POTS (and probably life threatening) is likely going on.
Also, thank you for being yourself and continually reminding me that I don't need to hide my own neurodivergence. You're making the world a better place with what you do.
Oh... and this is most definitely partly my perfectionism issue, but saying "POTS disorder" is kinda like saying ATM machine. Postural orthostatic tachycardia syndrome disorder sounds a little funny for people in the medical field. Things are either classified as a syndrome (a grouping of symptoms/signs characterizing a disease) or a disorder (a disturbance of normal functioning), but not both. Using both is redundant and unnecessary.
Sorry for being pedantic. I'm just hoping to help you to be taken seriously by the medical professionals.
The recommended sodium intake should be fact checked as well. It's a contentious topic, but 3000 is higher than most studies, organizations and textbooks recommend for adults.
Oh this one isn't a correction, but more of a tip: compression socks and stockings from retail stores are usually completely ineffective. Prescription compression stockings work better, are more individualized and last longer than anything that can be bought without a prescription.
It isn't that the average heart rate is 180bmp but that upon changing position, like sitting to standing, it can go up that high. It doesn't remain that high all the time but for those who are able to remain active it can stay that high for the duration of the exercise & for a while after. For example when I had a 24 hour heart monitor on my heart rate was 170bpm the entire time I was washing a window, then after the activity it went back down to 120bpm.
I don't think Chloe said that their heart beats 3 times faster but that their heart beats the same in one day as most beat in 3 days. Which while might be a slight exaduration ,I will have to do some maths & come back, the main symtoms is tachycardia which as she says means over 100bpm. Even if their heart rate just goes up occasionally, if it happens many times throughout the day, then that is overall a much higher heart rate than the average none potsy person.
@@werbnaright5012 Also I totally agree about the compressions stockings being the best quality from drs of professional medical sites. I actually got some from my Dr but they were the standard size & didn't fit my long lanky legs, they were more like wearing Wellington boots! So we're not effective. Once I got "made to measure" ones they were so much more effective I can not say how much.
However I wouldn't say that the standard ones are completely in effective, in fact a lot of people do find they help. For me they helped more when my symtoms weren't so bad & even now they still helped better than regular socks alone.
Money is of course a factor, mainstream compression clothing is cheaper than medical grade ones. Medical insurance or the budget of the healthcare provider may mean options are limited, for example I can not replace my stockings as often as suggested because my local NHS can not afford too.
Another factor is social issues & wanting to fit in, especially for teens. I admit I don't understand this as I am autistic & to me prioritizing my health is much more important than if people judge me for wearing compressions stockings. However like a lot of medical equipment, there is a saying like it's better to give something that will help good, rather than help very good but be left in their cupboard. So for a lot of people (a much higher number than I realized) wearing more socially acceptable compression wear is more socially & emotionally comfortable for them. I also think it is partly a problem of denial, ableism & not wanting to be seen as using something for "disabled people" but that's just conjecture.
Finally for autistic people & who have other sensory issues they may not be able to tolerate the high level of compression that would be most effective. I admit that on days where I am, I am not sure how to phrase it but my autism senses are stronger & my tolerance is lower, I do not wear my stockings as they are too distressing for me. Thankfully I can put up with them most of the time & I can adjust to this new normal of wearing them most of the time (Its Dr advice but also from an autsitic perspective, I deliberately put my stockings on before I get out of bed & just before I get to sleep, so awake is funny stocking legs for me, which has helped with the transition.)
*Also what you get from the Jab.....*
um no it’s not so i guess you get autism for the vacations too?
think before writing comments
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