I'm literally in tears right now. I've recently been diagnosed with POTS. My whole life it's been known as me "being lazy", "attention seeking", and the ever fun " just anxious". I've had this since childhood. I'm in my late 30s now. It's never too late to start treatments and validation. Thank you so much for bringing so many people who suffer with POTS a beautiful voice and educational information to share with others about our condition
I am in my early 30s and I've had the same since I was a teenager. I have a drs appointment booked but I am scared they aren't going to believe me even though my pulse shows it.
i guess Im randomly asking but does someone know of a trick to log back into an Instagram account..? I somehow lost my login password. I appreciate any tips you can offer me.
My daughter was recently diagnosed with pots. She's 8 years old and the doctors told me as she enters puberty her fainting will get worse. Thank you for making this video, it made both of us feel better about what's happening.
Found this video before I was diagnosed with POTS and was like "Ah that sounds scary!! Good thing I don't have that!" Came back a few weeks later like "oh..... that- that definitely happens". Thank you for helping me understand!!
Hi there! ❤️ Also a POTS sufferer here. Do you also have POTS/Fast heart rate when sitting and lying down, or do you just suffer from it when standing? Also, do you take betablockers? If yes, how much mg do you take? Thank you! 🙏
@@eltonmaragona9014 at its worst (when I wrote the original comment) I definitely did. I don’t take beta blockers. I do take cyproheptadine to counteract my POTS and motility issues. I also have hydroxyzine as needed if either flare up. I changed my diet to include high sodium (currently using Propel by Gatorade to do that). It took a long time to get more stable. In 2020 I finally started being able to exercise a bit and feel good most days! I still have flare ups, but I can control it much easier now. My tips for past me would be: 1. Sodium is your friend! Get 5x the normal recommended amount during a flare up. If you’re stuck somewhere in public, dump a few packets of salt into an empty cup or bottle with a mouthful of salt and down it. I call it a salt shot. After 10min or so, I could get safely home to rest. 2. Speaking of, rest. You can’t push through a flare up most days. If you do, it’ll come back with a vengeance later. Treat it with electrolytes and/or rest as soon as you can. 3. All other issues will trigger POTS. Panic attack? Add vertigo. Allergic reaction? Side of vertigo with that. Heat sick? Meet floor. If your body is going to be vulnerable in any way, be aware 4. This is more targeted at me specifically but DONT MOVE TO AN APARTMENT WITH 3 FLIGHTS OF STAIRS. I got stuck on those so many times. Only fell once tho. All in all, it gets better. Do your own research and experimenting to see what works for you. POTS is a spectrum, so my treatments likely won’t be the same as yours. Good luck!!
@@pianobooks42 hii! I have a question. Does your heart rate always stays in the same high number while standing? I don't know if i have pots i've had symptoms for two months now but my parents think it's just anxiety. My heart rate goes from 65-78 to 130-145 immediately after i stand but then goes down to 110-128 after standing still for a few minutes so i don't really know if that could be it. I really want to get tested I just want answers cause i feel awful everyday and walking seems impossible:(
And I was thinking that twice was a lot! Lol. I go out once for work and that's really one day too many. Those times that include doctor or other appointments on top of my one work day, I want to cry. Up until recently, I had a very hard time living within my energy requirements. I've always been an overachiever, people pleaser, but as my health declines, I just couldn't do it anymore. I stopped all appointments that weren't medical related. I stopped all outings with family and friends, which cost me some of these relationships. That was one of the hardest because if you're not chronically ill (and hope most people aren't) they just cannot understand what it's like to live in my shoes and how much I truly struggle throughout the day. Some just think I'm a hypochondriac or a flat out dramatic liar. I got enough of that from doctors growing up, I didn't need it from people who supposedly love me. Nevertheless, I joined support groups and met others like me and have whole new friends who get me! Chronic illness silver lining. 🤗
You should get a projector. If you are going to spend time staring at the ceiling, make it have a beautiful sky, or stars and nebula, or something else nice on it. I want to make my ceiling like the hall in Hogwarts, but with better weather. Maybe some gently swaying palm trees.
i was diagnosed with pots a few years ago, and you reminded me that its okay to be on the floor sometimes. i force myself to be upright all day and it kills me and laying down at bedtime is the only time of day i dont feel like crying. i need to take more breaks and pace myself. i work from home anyway because who can deal with being in an office when you cant function, so the facilities are there. its a self imposed stubborness i think all chronically ill people have to some degree.
Hi there! ❤️ Also a POTS sufferer here. Do you also have POTS/Fast heart rate when sitting and lying down, or do you just suffer from it when standing? Also, do you take betablockers? If yes, how much mg do you take? Thank you! 🙏
I’m 14 years old, i’ve been diagnosed with POTS and Narcolepsy. Your videos have helped me come to terms and be more informed on my illness and others!
We have 2 things in common. We are both lesbians and both have POTS. Thank you for making this video. I feel like I’m not alone. I used to not be able to stand for more than 5 minutes without almost fainting. I am on medication that helps to constrict my blood vessels now so I can do more things. I also understand how hard it is sometimes. I often have to rest for a few days after doing something big because it takes a lot out of me. I aim to have the same positivity that you do living with POTS. You are an inspiration to keep going even when illness makes life difficult.
I was diagnosed with POTS a few weeks ago, and it's quite likely that I have ME, too. What you said about "doing things left, right, and centre," is really good to hear. I'm a plumber, and naturally a do-er, and it's been really difficult coming to terms with how much I'm needing to rest lately, all I feel is guilt, but this video really helped. Thank you!
hey same! i’ve been diagnosed with ME already and i haven’t yet been diagnosed with POTS yet but i have every single symptom (except fainting, i’m lucky enough that it doesn’t get THAT far when i stand up too fast) so we’re pretty darn sure i have it😂 hang in there friend, and drink lots of water!
Hi Emmy I have ME and POTS too. Hope you’re getting support and understanding from your friends and family and proper treatment from your medical team. All of which can be a challenge.
I was diagnosed with POTS and Fibromyalgia last year and this is honestly the first video and explanation of someone else's experience. It's really wonderful to feel like I'm not alone, for years I was accused of pretending to faint, or told by doctors it was in my head.
My last period was three days. I have a chronic illness, but I don't think I've ever really given much consideration to how much more difficult I could have it if I had a "normal" menstrual cycle. It doesn't even affect the frequency or extremity of my migraines. You're lovely and you remind me often that it's OK to not always be OK.
Holy cow, you have PoTS too? I was diagnosed a couple years ago and thankfully it tends to be pretty mild unless I really lose my control on diet/hydration but crazy to know you have it too...
I stumbled on this video at 3am when my pots induced insomnia was running wild, but this video left me in tears. It’s the first time I’ve seen someone talk so candidly and positively about living with pots, and talk about it like it’s a real thing that can be a difficult to live with but you can still improve upon. Thank you so so much for making this because it’s such a useful thing that I can direct people to the next time I get asked about what pots is and how it realistically impacts your life!
Sounds like hyperadrenergic POTS, which is what I have. My doctor prescribed either Clonidine or Guanfacine to take before bed to manage my POTS and insomnia. Hoping you've found an effective treatment as well.
Mad props to you because you're super CUTE while doing your floor video. Thank you for sharing; really good information. My sister has Transverse Myelitis. She's had it for almost 12 yrs. now. She's 46 yrs. And, as close as we are, she just told me last year that she endures chronic pain daily. When I asked "Why didn't you tell us (immediate family, etc.)?" She said because she didn't think we would understand so, why bother. My point: I really do appreciate how honest and open you are about your illness. Your videos are very helpful. XOxo TM defined Transverse Myelitis (TM) is a disorder caused by inflammation of the spinal cord. It is characterized by symptoms and signs of neurological dysfunction in motor and sensory tracts on both sides of the spinal cord. The involvement of motor and sensory control pathways frequently produce altered sensation, weakness and sometimes urinary or bowel dysfunction.
Thank you lovely (especially for the 'cute despite being on the floor' part!) I hope your sister is getting help with her pain, even just to take the edge off 💐
She doesn't like taking pills, but she uses natural oils instead. I'm not sure if oils help or not because she doesn't speak about it. She is pretty consistent though. :o)
I'm 31 years of age. I got diagnosed with P.O.T.S and mitral valve prolapse at the age of 14 by my cardiologist. He never really went into detail about the condition. Thanks for making this video. Helps a lot. I've felt like I was the only one going through this. I wish you the best in life. Thanks agin
POTS and mitral valve prolapse? I hope you've been screened for Marfan syndrome, Loeys-Dietz syndrome, and the 13 types of Ehlers Danlos syndrome; and I hope you're doing well now. I have Ehlers Danlos syndrome and POTS.
I've been watching you for two years. I started watching when I started having symptoms, but the doctor couldn't/wouldn't figure it out. Two years, about 12 doctors later, and I just got diagnosed with POTS a few days ago. After pushing for every doctor to test for it, I finally got one who would order it. The point is, I stumbled across you when my life seemed like it couldn't get better and your videos have helped inspire me to keep going and staying positive, despite it only getting worse before it gets better. I know this must be common for you, but I just wanted to say thank you for being you and sharing it with us.
I have 2 tips for POTS When you are taking your medication, say a random word, such as duck, pink, truck or knot. This way if you ask someone "Did I take my medication today?" They will reply withb" Yeah, you said XYZ" The next one is for blood pooling. It can be painful, so put the blood pressure cuff hound your leg and start it! Pressure helps! At least for me!
I like the medisafe app for medication, plus using dosser boxes that I make up myself for morning and evening meds. In the summer cool wraps help with feet swelling. Although that's been so much better since I started midodrine...so much better!! I also wear skins high grade compression leggings and that helps :) X
Thank you!! I'm a fellow spoonie and have another friend with same condition: she is always cold and I am always burning up. I'm so sorry but it's nice to know I'm not the only one over-heating. And I live in Hawaii. so... yeah... quite warm. I just found your channel in the midst of a heavy time and I've recently lost my usual chipperness and good humour and things look dark and dreary. But YOU! Have helped me shift back to the land of smiles. Thank you from the bottom of my heart. xoxo
You look very picturesque lying on the floor. Your hair is still perfect! (: Really interesting video - I have found all of your videos talking about your life and living with a disability interesting, I feel much better informed. I hadn't heard of POTS before I started watching your videos, but know if I meet someone with it I'll be able to be like "Aha! I know what that is! By the way, there's this RUclipsr..."
My mum has FIbromyalgia and Ehlers Danlos syndrome and she has chronic back pain. Most of the people around her thought that she was faking it; it was manageable, etc, but she would really benefit from your recommendations. I'm gonna send this video to her and hope that it helps her to understand that she shouldn't pressure herself to continue through the pain when it is not absolutely necessary. It is also entirely possible that my younger sister and I damaged her back by being too boisterous and occasionally causing her to fall over while we were playing when we were little :) She also has a friend called Sarah, who coincidentally both lives in brighton and has chronic fatigue! Perhaps you have encountered her before but I have no idea how big or small Brighton is so I should shut up. Anyway you are my favourite human in the universe! I have autism and I am gay and seeing how you live your unique life really happily makes me hopeful for my future.
I was just recently diagnosed with POTs whilst still in high school As well as being diagnosed with EDs a few years ago and it has been such a difficult time. But seeing people raise awareness of the unknown and I talked about condition makes me happier
I spent years not knowing what was causing all of my crazy symptoms of fatigue, nausea, constantly being sick, etc. I was finally diagnosed with POTS and autonomic dysfunction recently and have since been looking for people who understand and represent some of the things I've dealt with. I am also pansexual and your videos mean so much to me! Thank you for sharing your stories and advice. You are so uplifting and inspiring!
I have pots as well, and let me tell you it ruined my life going undiagnosed. Thankfully we found answers at Seattle's Children's hospital. Everything you said is true, and I can relate. I really hope with this video we can spread this illness to more of an understanding. Thank you for making this video. And for anyone who does have pots and is struggling, you can get through it and your life will be back on track, you can't give up. I'm back to being my old self again (with pots) and I'm happier knowing that there is a way to get through this. I strongly encourage people to share this to spread awareness. I hope one day this can be a topic in health class, and a recognized illness to all doctors. Thank you so much for making this video and showing that this illness can't keep us down
I’ve watched your vintage style and hair videos and never realized you had pots (which I was diagnosed with about a year ago) it’s so crazy it’s like you’re describing the same exact symptoms as myself and with pots that is so incredibly rare what a crazy world we live in 💛
i just got diagnosed with pots (my cardiologist described my condition as “one of the top 2 most severe cases he’s ever seen”). it’s the worst thing i’ve ever experienced, probably the worst thing i ever will experience, but this video was really nice and helpful to see. thank you 💗
I have POTs, intestinal failure (meaning I can't eat or drink), EDS and some other stuff. I recently started illness and BookTube videos. I'm a recent subscriber and didn't realise you had POTs. It's rare to find others, so thanks so much for putting this out there xx
I have hypermobile type Ehlers Danlos syndrome, which causes POTS, gastroparesis, and other stuff. Mayo Clinic and Vanderbilt pioneered repurposing the old medication Pyridostigmine to treat both POTS and gastroparesis and other digestive motility disorders. Wondering if your doctors tried you on that as well. It's been a miracle for me.
I have been following you since before this was first uploaded, now, four years later, I'm starting to recognize more and more of these symptoms in myself. It's like a very gradual development that must have started in my teens and now in my early twenties it's getting to a point where I'm seeking diagnosis, but it's so hard to get doctors to take my symptoms seriously...
The resting before the event it is a really nice advice, i did that when i had a music band, took a loooooong bath and basically secluded my self from the most tings i can (because Asperger's, anxiety and depression) so i could manage being on stage
I love this so so much! I faint all the time, and sometimes people think I’m making it up, or they think I’m being dramatic/annoying. So many people think I’m like a child that can’t survive on my own because of the fainting. It can be so frustrating but this video is literally my favourite thing in the world right now, because now I know someone who understands 😭❤️
I used to have the worst periods. Fainting, puking, lying on the cold tiles screaming for my mam, crippling cramps THE WORKS! I got the implanon and havent had a period in 5 years. It might not work for everyone but it is something I would thoroughly (I can't think of the word I want to say, cognitive impairments) 'nicely insist' people look into it. It really helped me.
terri-louise Ó leathlobhair I feel horrible every month.. I don't know how my body would handle hormones (I worry about blood clots as well). Do you know how high the risks are with that?
I just got diagnosed with POTS after six months of constantly passing out, and it's something of a relief to see someone else who spends so much time on the floor. It's been hard to relearn how to live around it, so thank you for sharing and being so positive!
Besides being adorable, you are helping so many people (including myself) who are dealing with a variety of diseases. Your spirit and your smile, despite having to go through so much, brighten my day and help me deal with my illnesses too. You're wonderful!
I was diagnosed with PoTS when I was 10 and I have always felt so alone in my experience. It was hard to explain to others why I had to be super careful and why I had to sit all the time. After seeing this video I was so glad that I wasn’t alone in my awful experience and that there are others out there just like me. Thank you so much for making this video and helping so me and many others realize that they weren’t alone!
I suffer from long periods as well, and was placed on a birth control tats continuous. I only have it once a year, and it’s completely healthy. I wish you much happiness, you are an incredibly strong person ❤️
I was recently diagnosed with POTS! Thank you for such a lovely video. I adore your vintage style and the way you communicate your ideas with such a delightful sense of humor ❤️
I absolutely love your mindset. You have such a happy and cheerful energy about you despite what you go thru. I see you as one of the strongest people of people. Keep up all the inspiring messages and stories and showing people a better way of dealing with whatever condition they're going thru. You're amazing
I've been watching your videos for so many years and still had no idea I had EDS, POTS, MCAS, etc until a few months ago. The rewatch of all your videos has been so enlightening and educational! Thank you so much for your positivity and being an inspiration to me:)
All these tips are 100% absolutely spot on! You're human kills me, I love it! I was diagnosed in January with Post Viral Fatigue Syndrome & Myalgia which my CRPS just loves!! Lol. I tried TO work through my conditions and basically couldn't get off the couch or out of bed for nearly 2 months, so yeah, take it slow. Hope you fèl better soon Jessica xx
I know this video is 7 years old, but I was diagnosed with POTS back in October. mine is a relatively mild case but it's still affected my life and having a diagnosis has given me so many answers. thank you for making such an informative video about it!
I am a rare case... I have an Idiopathic Intracranial Hypotension and a CSF Leak trough my nose. I suffered badly for 5 years in bedrest. The deal is, I am just 21 now. I was a year free of symptoms, but I got them back. I hope it's not but a mere flu. I wish somebody had talk to me like you did in this video, you're a real treasure. BTW, I am not deaf, but I attended an otherwise all- deaf school here in Finland. Greetings
you seem so bright, cheerful, and energetic for being symptomatic in this video 🥺 i can’t do anything when i’m symptomatic, i can barely talk sometimes
I love it that you filmed this from your beautiful carpet. My latest blackout was in 95degree heat - and even tho I aimed for a soft grass landing, my head still hit the ground pretty hard. It’s been over a month and I still get “ice pick” headaches. Yesterday I finally got a CT scan - fingers crossed that the ‘damage’ is fixable!
I have pots, but I dont fall down, I just lose half my vision, my parents wouldnt believe me so I have nightmares now realizing I was driving 2 hours every day for like 7 years with an undiagnosed fainting condition(that I was not treating like I do now, lots of salts and liquids) because no one would listen. And I was punished for pulling over in the car when I felt unable to go on. Because you know, I was obviously just lazy. I do remember I would guzzle pickle juice whenever I had the cance though, probably my body just sending what it needed.
I just wanted to come back here and say I first learned about pots from this video about a year ago and through denial to 'shit maybe I have this' to waiting for doctors to take me serious and then when they did waiting to get tested, I have my diagnosis now, as of last Thursday. Thank you so much for this video, I'm finally getting help for something I've been struggling with since my teens. I really couldn't have gotten to this point without you.
I already follow all of these tips :P i have MS, not pots but i think these tips really apply to most chronic illnesses. Well done, i love your channel. It really cheers me up:)
I'm 18 and have epilepsy, hypoglycemia, chronic fatigue syndrome and work a full time job. Your videos have really helped and you are so beautiful. Keep up the good work.
I just recently came across your videos and I really appreciate them! Your style and grace is amazing and is made even more so in the face of chronic illness! I have multiple sclerosis and several other issues. Some days it is SO hard to get up and face the day much less face it with a smile. I love your vintage hair styles! I am SO excited to try some of the tutorials! I often feel pressured to push myself too much by many people in my life. Its very hard to find a balance in life to say I am at my limit. I don't want to feel like I am less than other people because of my illness. Thank you for this video. I am going to work on trying to accept that I am not less because of my illness.
So I've been sick with CFS for about five years, and done quite a bit of research into that. I've also known people with PoTS, but assumed it wasn't something I'd be dealing with because I knew vaguely that it was a cardio thing, and I thought my heart was fine. I got a couple of minutes into this video and went '........oh' and googled PoTS symptoms. I found the site you later recommended and reading through the symptoms was like reading a call-out post written specifically for me. As in, things I'e suffered all my life. My Mum then got me to stand for ten minutes (a real issue given as it's late and I'm having a not-so-great CFS flare up at the moment) to test my heart rate and blood pressure as suggested by the site and the results were fairly consistent with what the diagnosis page says are required. I'm making an appointment with my GP this week. Thank you so much for the videos you make. I only found you today and I feel like they've already made a difference to me. I was having a hard time mentally and I feel a little less alone and a little more valid
I have COPD with quite bad emphysema and I watch your videos when I'm having a bad day. Or a good day, whatever - I just love listening to you, your wife and friends. Thanks for the many tips on coping with chronic illness, really invaluable and it's not the kind of information doctors will give you. Big hugs!
I've known I had POTS for forever but was just recently diagnosed. I cannot tell you how comforting it is to find others with this condition. Thank you. Finally a video the non pots people can y understand. Thank you! Oh yes the bright lightning, lights & sounds are hard for me.
I used to spend hours on the Sims 2! You got me a big case of nostalgia... and yes we ALL do ourselves, I use to create me and my crush of the moment and fantasize a perfect lesbian life. Thanks for taking the energy to make a video.
This is basically my life now. Dizzy, fatigued, can't stand without feeling like I'm gonna faint. Vestibular migraine was my first diagnosis, hoping this isn't what I have. Stay strong you are a beautiful person and inspiration.
Hi there! ❤️ Also a POTS sufferer here. Do you also have POTS/Fast heart rate when sitting and lying down, or do you just suffer from it when standing? Also, do you take betablockers? If yes, how much mg do you take? Thank you! 🙏
Got diagnosed a couple weeks ago and scared crapless for another thing to be added to my list of growing diagnoses. Thank you. Thank you thank you thank-you. For validating, being relatable, searchable, and honest about POTS. And yes, you should get better lights. Better softer lighting is always nice on headaches, says the 10 year chronic migraine sufferer.
I am not dealing with the exact medical issues as you, but I do enjoy your vids! My health challenges include fibromyalgia, asthma, and now possibly cushings. I get stuck on the sofa, not the floor, cuddling with my dog, air conditioner AND industrial sized fan blasting. My wife kids that I'm trying to freeze her out, when in my reality, I'm just hoping to avoid spontaneous combustion! Cheers from the U.S.
Jessica, you are so right! My first year post kidney transplant I have tried to take on too much and basically ended up not really doing anything that great! 🤦🏻♀️I have now decided to focus on my main things that I want and I have limited my self to those! I have also come to the realisation I can't do everything in my first year of my kidney transplant! You really are a clever women and a great ambassador for invisible illness! I really enjoyed your advice! Hope you are feeling a bit better today! 😊👌🏻👍🏻 ps I'm Mini New Yorker on Instagram! 😊 one and the same!
Jessica Kellgren-Fozard yes exactly I actually said to my hubby sometimes we have to zig and zag a bit instead of getting there in a straight line! It might take a bit longer but I will be happy when I get there! ☺️x
Something so grounding (no pun intended) about physically seeing someone else being so pretty and functional and eloquent and generally lovely all while lying on the floor. Obviously you're not that put together all the time, and probably quietly screaming with pain underneath, but it's just nice to see ourselves reflected in such a flattering way, if that makes sense
So I just found that you have so many of the same conditions I do. You said you have a connective tissue disorder as well. I do to! I have hEDS. So do my two daughters. My younger daughter and I have POTS. I spend so much time in bed. I had a hysterectomy at 28 years old because I had such bad “lady issues”. It’s so nice when I find people who are “like me”. But also sad that others are “like me”. I hate living my life by the spoon theory. I wish I had unlimited spoons. I’m sure you have heard of the spoon theory. It’s just the best way to explain chronic illness to “normal” people.
Thank you so much for making this video!!!! It's good to know that I'm not alone in this! Love your humor and personality!!! Also, period hack. Ask your doctor if there fine with ya skipping the placebo pills in the birth control packs. I know a few people who do this. It's a game-changer, especially with people like us with chronic illnesses!
Watching this laying on my bedroom floor in pain while trying not to choke on my tea lol. I love watching your videos on my bad days because they make me so happy
I take cordyceps, bucthers broom, iron, and Chlorophyll for my pots, and it really works! The other day i stood up for almost an hour with no palpitations and stuff
I was diagnosed with PoTS in secondary school. I never really understood what it was apart from the fact it made me pass out, and increased my heart rate. But recently at work it’s gotten a lot worse. I work in a warehouse so I’m constantly bending down, standing up… and of course, feeling faint. It really sucks because although my mum knows about this condition I have, I still feel incredibly guilty and judged when I have an “episode” (as I like to call them.) I pass out fully, maybe 3 times a year. But my more common symptoms are, light headedness, weakness, brain fog, deafness (during an episode), and blindness (also during an episode) My doctor suggested salt, and water to help when I got diagnosed after fainting one day. But I didn’t get given any medication. I’m reading that a lot of people had to do a table tilt test. But my doctor literally checked my heart rate, from just standing up, and that was enough to know I had this condition. It’s terrifying. I end up in tears over it as it scares me a lot. There was a day in school I ran from the hub to the field (about 100 yards away) and my heart rate increased so drastically, (it was something crazy like 167 bpm) I had to get sent home. Having a heart rate monitor that I can just slip on my finger is a god send. I record everything down. I test my heart rate every morning when I wake up, and then when I get out of bed, just to have the documented data. I try not to push myself at work, but unfortunately I’m not hitting the recommended performance. I’m hoping they give me some mercy, due to this condition, but, we’ll see. This video taught me a lot. So thank you. It’s nice to know I’m not alone in this. Also, you are super pretty! ❤️
I have different illnesses but the life tips are the things we are all told to do but it's much more reassuring that others have to do these steps too or wear the consequences. Thank you for helping us all be better to ourselves and each other :)
I fainted in the garden and fell heavily onto a low wall in 2018. After cracking some ribs and a getting a Tibial Plateau Fracture (aka broken knee) I’m now permanently in a wheelchair, I can’t stand, weight bear, bend my knee and I have a dropped foot. I was asked if I enjoyed being in a wheelchair and I was accused of tensing my knee. I’d had an ENG test which showed I’d got nerve damage and it proved that I wouldn’t be able to bend my knee. I’d got damage to the Perennial and Sciatic nerves. I’m now diagnosed with Complex Regional Pain Syndrome and Osteoporosis as well as the many other syndromes and Autoimmune conditions I’d had before I fainted. Please be careful if you feel dizzy or faint because breaking some bones can be life changing.
Great video! I recognise the Ikea rug. A smaller version is in my house in our bedroom. Avoiding or altering periods is of course something you can do. My memory is too foggy to remember the specifics but either the mini pill or progesterone can possibly be good for POTS. I tried whichever way round it is that's ok if you get migraines but it had the reverse effect from reducing periods! Hopefully I'll remember the specifics of what I mean...
Missing periods has made a huge difference to me! I use the combined oestrogen progesterone pill and just skip the breaks. You do not need the breaks, some obs & gynae doctors say 4 a year is wise, but no evidence of risk. But not everyone can tolerate the hormones. The Mirena is good as the low progesterone only goes locally in womb so shouldn't cause side effects. But I think it's a bit less predictable to start with. Definitely worth trying to find a way to have less periods in pots though, alongside meds it's made a big difference to me.
Lying flat on the floor is sometimes the only way i can get comfy. My back aches so much I feel sick & I get an overwhelming need to lie flat on a semi hard surface. So comfy & relaxing. Only happened after my Spinal Cord Stimulator implant due to weak back muscles. Thank you Jessica for helping me to explain to my family by using this video. I'm forever indebted to you for your help.
Thank you for making this video! I have POTS as well and would love to make a video explaining what it is but I always worry I'll get my information wrong or leave something important out. I just have to get my information together lol. I'm so happy to come across videos that spread awareness! Great job!
I was just diagnosed with POTS today. So this is so incredibly informative i haven't fainted before thankfully. The dizziness is very real though for the longest time i thought it was just from my chiari... Nope definitely not that. Getting hit with a box truck and ending up with severe Occipital Neuritis did not help. We're all just messed up little potatoes trying to get through the day. Thank you for your wisdom.
I was just diagnosed with POTS this week and have been feeling really frustrated and everything with it. Thanks for sharing, it's helpful knowing other awesomeeee people have it.
I've watched you for a long time (I'm also a disabled/ND QTPOC). My sister told me she thinks she has POTS recently. So naturally i thought of you haha! I've been spending more time with her and her bf so I've literally seen them do the partner-grab-so-they-don't-fall thing multiple times! Thinking back, i can see these issues back in our childhood. They're also working on mental health related issues... I'm scared for her and I want to help them in any way I can, so having this reference from someone I am already familiar with is so helpful and comforting. Thank you 🙏🏼🙏🏽
I'm also a potsie! Its awesome to see that there is a community of us somewhere in the world 😂 I was diagnosed as a child and have had to explain it to every doctor but one (my most recent cardiac specialist, also one nurse knew, that's it).
I was diagnosed with POTS in September 2019, at age 60. I've had it since I was 17 and got Mononucleosis. I use a power Wheelchair now and have learned many coping mechanisms.
I don't pass out but feel extremely lightheaded and was told I didn't have it bad enough compared to others which I'm glad I don't just undermines your feelings when people do that.
Not sure if this is worth the hassle, but Nexplanon does suppress periods on certain women. I've had maybe 3 periods in 4 years now. Also, you are amazing and your videos brighten my days.
@@jessicaoutofthecloset check your ferritin levels. POTS, flooding periods are my problems ( amongst many others)…it turned out I have been severely ferritin deficient for years after a horrific c section that also doubled as fibroid myomectomy ( due to having a fibroid as gigantic as a baby’s head). Since my hemoglobin was always low normal, no one thought to check that. Only this past year did I have a ferritin of 8 ( basically severely iron deficient). A year later, I’m at 30, still have those crazy symptoms and pots is now part of my life. Should really be 100 and don’t let docs tell you otherwise. As a side note, you’re super charming and your videos are very catchy. Wish you the best!! P.s. when I raised my ferritin to 30, my periods are now 3-4 days and I thought this was abnormal. Turns out, I was living in period - hell all of my life up until now and not knowing it.
I have Ehlers Danlos Syndrome (hypermobilty type) and POTS. I wasn’t diagnosed with anything until I was 37 yrs old, but I knew something was “off” since I was about 13.
I ve been watching your videos for a few months and love how informative they are. I had a bad virus and some tachycardia and dizziness so ended up in a&e last month and a doctor mentioned getting tested for POTS. And this morning I ve fainted for the first time and another doctor is pretty confident I have it but all I can do is wait for tests so I m trying to be a positive as you are in your videos.
I've been seeing different doctors since I was 12 with complaints about dizziness and brain fog (trouble speaking, trouble moving my limbs, squeezing my hands) that gets really bad when im standing, walking or sitting up too long, when it's hot, and when I'm standing up. And no one ever thought to check if I might have pots. I got meds for tachycardia lately and my heart still pounds like crazy and I realised a week ago that hey. Maybe this is the thing I've been looking for for the past 15 years 🤦
Just want to add my support to the people suggesting an IUD. I used to get 14 day periods (!!!), and once I got a Mirena, they stopped completely, as did my mood swings. I'm now on my second one and haven't had a period in over seven years--it's amazing!
Jessica, thank you so much for explaining what PoTs is and how you have learned ways to handle it day by day. I love the way you can always be generally upbeat and positive in any situation. I sometimes have to snap myself out of the 'Woe is me' mood. I am learning so much from you, and trying to take every day as it it comes looking for the positive when a part of me does not. Again thank you so much for your upbeat personality. On a side note, I think that your hair and top coordinate well with your rug. 😎 Tricia B👗👗👗
Hello dear Jessica on the floor! The laying on a hard surface thing seems to be good for lots of illnesses. I, for one, always lay on the floor when I have a massive migraine. It's just so much better! I love your tips, by the way, and I think everyone should follow them, even if they don't have a chronic illness. It really sucks that you have an especially bad patch every time shark week hits. Why is there no solution for this by now? Ugh. I hope you have a good week going on with as little floor time as possible ❤️
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I'm literally in tears right now. I've recently been diagnosed with POTS. My whole life it's been known as me "being lazy", "attention seeking", and the ever fun " just anxious". I've had this since childhood. I'm in my late 30s now. It's never too late to start treatments and validation. Thank you so much for bringing so many people who suffer with POTS a beautiful voice and educational information to share with others about our condition
I am in my early 30s and I've had the same since I was a teenager. I have a drs appointment booked but I am scared they aren't going to believe me even though my pulse shows it.
Never has lying on the floor looked so stylish, graceful and pretty😀
Awnn thanks Jenny!
JennyG IKR! I would look absolutely horrid lol!
It is true! New perfect filming setting
I wished I looked like this when I have to lay down due to my POTS😂
i guess Im randomly asking but does someone know of a trick to log back into an Instagram account..?
I somehow lost my login password. I appreciate any tips you can offer me.
"I'm gonna have such a double chin in this video"
*Has literally zero double chin in the whole video and looks effortlessly graceful* GOALS!
My daughter was recently diagnosed with pots. She's 8 years old and the doctors told me as she enters puberty her fainting will get worse. Thank you for making this video, it made both of us feel better about what's happening.
That makes so much sense! I barely had any symptoms as a child and we only noticed them when I turned 15/16
Found this video before I was diagnosed with POTS and was like "Ah that sounds scary!! Good thing I don't have that!" Came back a few weeks later like "oh..... that- that definitely happens".
Thank you for helping me understand!!
+pianobooks42 oh no, that's painfully ironic! Glad the video helps you though x
Hi there! ❤️ Also a POTS sufferer here. Do you also have POTS/Fast heart rate when sitting and lying down, or do you just suffer from it when standing? Also, do you take betablockers? If yes, how much mg do you take? Thank you! 🙏
@@eltonmaragona9014 at its worst (when I wrote the original comment) I definitely did.
I don’t take beta blockers. I do take cyproheptadine to counteract my POTS and motility issues. I also have hydroxyzine as needed if either flare up.
I changed my diet to include high sodium (currently using Propel by Gatorade to do that). It took a long time to get more stable. In 2020 I finally started being able to exercise a bit and feel good most days! I still have flare ups, but I can control it much easier now.
My tips for past me would be:
1. Sodium is your friend! Get 5x the normal recommended amount during a flare up. If you’re stuck somewhere in public, dump a few packets of salt into an empty cup or bottle with a mouthful of salt and down it. I call it a salt shot. After 10min or so, I could get safely home to rest.
2. Speaking of, rest. You can’t push through a flare up most days. If you do, it’ll come back with a vengeance later. Treat it with electrolytes and/or rest as soon as you can.
3. All other issues will trigger POTS. Panic attack? Add vertigo. Allergic reaction? Side of vertigo with that. Heat sick? Meet floor. If your body is going to be vulnerable in any way, be aware
4. This is more targeted at me specifically but DONT MOVE TO AN APARTMENT WITH 3 FLIGHTS OF STAIRS. I got stuck on those so many times. Only fell once tho.
All in all, it gets better. Do your own research and experimenting to see what works for you. POTS is a spectrum, so my treatments likely won’t be the same as yours. Good luck!!
@@pianobooks42 hii! I have a question. Does your heart rate always stays in the same high number while standing? I don't know if i have pots i've had symptoms for two months now but my parents think it's just anxiety. My heart rate goes from 65-78 to 130-145 immediately after i stand but then goes down to 110-128 after standing still for a few minutes so i don't really know if that could be it. I really want to get tested I just want answers cause i feel awful everyday and walking seems impossible:(
@@nat9844 I’m not sure honestly. I’d get checked though! In the meantime, try drinking electrolyte drinks
Ahh!! I basically leave the house on average twice a week too! Thanks for taking time out to explain POTS in your gorgeous accessible way
Of course lovely! And thank you for sharing the video ❤
And I was thinking that twice was a lot! Lol. I go out once for work and that's really one day too many. Those times that include doctor or other appointments on top of my one work day, I want to cry. Up until recently, I had a very hard time living within my energy requirements. I've always been an overachiever, people pleaser, but as my health declines, I just couldn't do it anymore. I stopped all appointments that weren't medical related. I stopped all outings with family and friends, which cost me some of these relationships. That was one of the hardest because if you're not chronically ill (and hope most people aren't) they just cannot understand what it's like to live in my shoes and how much I truly struggle throughout the day. Some just think I'm a hypochondriac or a flat out dramatic liar. I got enough of that from doctors growing up, I didn't need it from people who supposedly love me. Nevertheless, I joined support groups and met others like me and have whole new friends who get me! Chronic illness silver lining. 🤗
You should get a projector. If you are going to spend time staring at the ceiling, make it have a beautiful sky, or stars and nebula, or something else nice on it. I want to make my ceiling like the hall in Hogwarts, but with better weather. Maybe some gently swaying palm trees.
i was diagnosed with pots a few years ago, and you reminded me that its okay to be on the floor sometimes. i force myself to be upright all day and it kills me and laying down at bedtime is the only time of day i dont feel like crying. i need to take more breaks and pace myself. i work from home anyway because who can deal with being in an office when you cant function, so the facilities are there. its a self imposed stubborness i think all chronically ill people have to some degree.
Hi Meg! I totally understand what you mean, but it is important to just pace yourself sometimes and leave the stubbornness behind... xx
Hi there! ❤️ Also a POTS sufferer here. Do you also have POTS/Fast heart rate when sitting and lying down, or do you just suffer from it when standing? Also, do you take betablockers? If yes, how much mg do you take? Thank you! 🙏
I’m 14 years old, i’ve been diagnosed with POTS and Narcolepsy. Your videos have helped me come to terms and be more informed on my illness and others!
We have 2 things in common. We are both lesbians and both have POTS. Thank you for making this video. I feel like I’m not alone. I used to not be able to stand for more than 5 minutes without almost fainting. I am on medication that helps to constrict my blood vessels now so I can do more things. I also understand how hard it is sometimes. I often have to rest for a few days after doing something big because it takes a lot out of me. I aim to have the same positivity that you do living with POTS. You are an inspiration to keep going even when illness makes life difficult.
+Jade Frangou-Mayer you’re never alone my dear, I promise- I’m lying down with you 😘
Jessica Kellgren-Fozard
i wish i van join.... *But* im a lesbian.
Enter a third lesbian with pots
I was diagnosed with POTS a few weeks ago, and it's quite likely that I have ME, too. What you said about "doing things left, right, and centre," is really good to hear. I'm a plumber, and naturally a do-er, and it's been really difficult coming to terms with how much I'm needing to rest lately, all I feel is guilt, but this video really helped. Thank you!
hey same! i’ve been diagnosed with ME already and i haven’t yet been diagnosed with POTS yet but i have every single symptom (except fainting, i’m lucky enough that it doesn’t get THAT far when i stand up too fast) so we’re pretty darn sure i have it😂 hang in there friend, and drink lots of water!
Hi Emmy I have ME and POTS too. Hope you’re getting support and understanding from your friends and family and proper treatment from your medical team. All of which can be a challenge.
There's a shirt that says
"I have pots I basically stare at ceilings"
I was diagnosed with POTS and Fibromyalgia last year and this is honestly the first video and explanation of someone else's experience. It's really wonderful to feel like I'm not alone, for years I was accused of pretending to faint, or told by doctors it was in my head.
So sorry to hear this, sadly I got doctors thinking I was faking it as well...
It took almost 7 years to get an official diagnosis for fibro I spend about 22 hours in bed every single dAy
My last period was three days. I have a chronic illness, but I don't think I've ever really given much consideration to how much more difficult I could have it if I had a "normal" menstrual cycle. It doesn't even affect the frequency or extremity of my migraines.
You're lovely and you remind me often that it's OK to not always be OK.
Holy cow, you have PoTS too? I was diagnosed a couple years ago and thankfully it tends to be pretty mild unless I really lose my control on diet/hydration but crazy to know you have it too...
I stumbled on this video at 3am when my pots induced insomnia was running wild, but this video left me in tears. It’s the first time I’ve seen someone talk so candidly and positively about living with pots, and talk about it like it’s a real thing that can be a difficult to live with but you can still improve upon. Thank you so so much for making this because it’s such a useful thing that I can direct people to the next time I get asked about what pots is and how it realistically impacts your life!
Sounds like hyperadrenergic POTS, which is what I have. My doctor prescribed either Clonidine or Guanfacine to take before bed to manage my POTS and insomnia. Hoping you've found an effective treatment as well.
Me rn!!
Mad props to you because you're super CUTE while doing your floor video. Thank you for sharing; really good information.
My sister has Transverse Myelitis. She's had it for almost 12 yrs. now. She's 46 yrs. And, as close as we are, she just told me last year that she endures chronic pain daily. When I asked "Why didn't you tell us (immediate family, etc.)?" She said because she didn't think we would understand so, why bother. My point: I really do appreciate how honest and open you are about your illness. Your videos are very helpful. XOxo
TM defined
Transverse Myelitis (TM) is a disorder caused by inflammation of the spinal cord. It is characterized by symptoms and signs of neurological dysfunction in motor and sensory tracts on both sides of the spinal cord. The involvement of motor and sensory control pathways frequently produce altered sensation, weakness and sometimes urinary or bowel dysfunction.
Thank you lovely (especially for the 'cute despite being on the floor' part!) I hope your sister is getting help with her pain, even just to take the edge off 💐
She doesn't like taking pills, but she uses natural oils instead. I'm not sure if oils help or not because she doesn't speak about it. She is pretty consistent though. :o)
I'm 31 years of age. I got diagnosed with P.O.T.S and mitral valve prolapse at the age of 14 by my cardiologist. He never really went into detail about the condition. Thanks for making this video. Helps a lot. I've felt like I was the only one going through this. I wish you the best in life. Thanks agin
POTS and mitral valve prolapse? I hope you've been screened for Marfan syndrome, Loeys-Dietz syndrome, and the 13 types of Ehlers Danlos syndrome; and I hope you're doing well now. I have Ehlers Danlos syndrome and POTS.
I've been watching you for two years. I started watching when I started having symptoms, but the doctor couldn't/wouldn't figure it out. Two years, about 12 doctors later, and I just got diagnosed with POTS a few days ago. After pushing for every doctor to test for it, I finally got one who would order it.
The point is, I stumbled across you when my life seemed like it couldn't get better and your videos have helped inspire me to keep going and staying positive, despite it only getting worse before it gets better. I know this must be common for you, but I just wanted to say thank you for being you and sharing it with us.
I have 2 tips for POTS
When you are taking your medication, say a random word, such as duck, pink, truck or knot. This way if you ask someone "Did I take my medication today?" They will reply withb" Yeah, you said XYZ"
The next one is for blood pooling. It can be painful, so put the blood pressure cuff hound your leg and start it! Pressure helps! At least for me!
I like the medisafe app for medication, plus using dosser boxes that I make up myself for morning and evening meds. In the summer cool wraps help with feet swelling. Although that's been so much better since I started midodrine...so much better!! I also wear skins high grade compression leggings and that helps :) X
Thank you!! I'm a fellow spoonie and have another friend with same condition: she is always cold and I am always burning up. I'm so sorry but it's nice to know I'm not the only one over-heating. And I live in Hawaii. so... yeah... quite warm. I just found your channel in the midst of a heavy time and I've recently lost my usual chipperness and good humour and things look dark and dreary. But YOU! Have helped me shift back to the land of smiles. Thank you from the bottom of my heart. xoxo
You look very picturesque lying on the floor. Your hair is still perfect! (:
Really interesting video - I have found all of your videos talking about your life and living with a disability interesting, I feel much better informed. I hadn't heard of POTS before I started watching your videos, but know if I meet someone with it I'll be able to be like "Aha! I know what that is! By the way, there's this RUclipsr..."
ha ha by all means please recommend my videos to friends and family! x
My mum has FIbromyalgia and Ehlers Danlos syndrome and she has chronic back pain. Most of the people around her thought that she was faking it; it was manageable, etc, but she would really benefit from your recommendations. I'm gonna send this video to her and hope that it helps her to understand that she shouldn't pressure herself to continue through the pain when it is not absolutely necessary. It is also entirely possible that my younger sister and I damaged her back by being too boisterous and occasionally causing her to fall over while we were playing when we were little :)
She also has a friend called Sarah, who coincidentally both lives in brighton and has chronic fatigue! Perhaps you have encountered her before but I have no idea how big or small Brighton is so I should shut up. Anyway you are my favourite human in the universe! I have autism and I am gay and seeing how you live your unique life really happily makes me hopeful for my future.
I was just recently diagnosed with POTs whilst still in high school As well as being diagnosed with EDs a few years ago and it has been such a difficult time.
But seeing people raise awareness of the unknown and I talked about condition makes me happier
I spent years not knowing what was causing all of my crazy symptoms of fatigue, nausea, constantly being sick, etc. I was finally diagnosed with POTS and autonomic dysfunction recently and have since been looking for people who understand and represent some of the things I've dealt with. I am also pansexual and your videos mean so much to me! Thank you for sharing your stories and advice. You are so uplifting and inspiring!
I have pots as well, and let me tell you it ruined my life going undiagnosed. Thankfully we found answers at Seattle's Children's hospital. Everything you said is true, and I can relate. I really hope with this video we can spread this illness to more of an understanding. Thank you for making this video. And for anyone who does have pots and is struggling, you can get through it and your life will be back on track, you can't give up. I'm back to being my old self again (with pots) and I'm happier knowing that there is a way to get through this. I strongly encourage people to share this to spread awareness. I hope one day this can be a topic in health class, and a recognized illness to all doctors. Thank you so much for making this video and showing that this illness can't keep us down
Hi Brianna! Going undiagnosed can be a nightmare... thank you for your nice comment on my video, so glad you found it informative x
hello how did you recover from pots???
I’ve watched your vintage style and hair videos and never realized you had pots (which I was diagnosed with about a year ago) it’s so crazy it’s like you’re describing the same exact symptoms as myself and with pots that is so incredibly rare what a crazy world we live in 💛
i just got diagnosed with pots (my cardiologist described my condition as “one of the top 2 most severe cases he’s ever seen”). it’s the worst thing i’ve ever experienced, probably the worst thing i ever will experience, but this video was really nice and helpful to see. thank you 💗
I have POTs, intestinal failure (meaning I can't eat or drink), EDS and some other stuff. I recently started illness and BookTube videos. I'm a recent subscriber and didn't realise you had POTs. It's rare to find others, so thanks so much for putting this out there xx
Hannah Hodgson have you watched christine doherty's videos?
Maureen Keegan I haven't, but have subbed now - thanks! X
I feel the same- it's so nice to know I'm not alone! xxx
I have hypermobile type Ehlers Danlos syndrome, which causes POTS, gastroparesis, and other stuff. Mayo Clinic and Vanderbilt pioneered repurposing the old medication Pyridostigmine to treat both POTS and gastroparesis and other digestive motility disorders. Wondering if your doctors tried you on that as well. It's been a miracle for me.
I have been following you since before this was first uploaded, now, four years later, I'm starting to recognize more and more of these symptoms in myself. It's like a very gradual development that must have started in my teens and now in my early twenties it's getting to a point where I'm seeking diagnosis, but it's so hard to get doctors to take my symptoms seriously...
The resting before the event it is a really nice advice, i did that when i had a music band, took a loooooong bath and basically secluded my self from the most tings i can (because Asperger's, anxiety and depression) so i could manage being on stage
I love this so so much! I faint all the time, and sometimes people think I’m making it up, or they think I’m being dramatic/annoying. So many people think I’m like a child that can’t survive on my own because of the fainting. It can be so frustrating but this video is literally my favourite thing in the world right now, because now I know someone who understands 😭❤️
So nice founding a youtuber that has the same illness as me. No one knows about it and I am so glad you are raising awareness about it!
I used to have the worst periods. Fainting, puking, lying on the cold tiles screaming for my mam, crippling cramps THE WORKS! I got the implanon and havent had a period in 5 years. It might not work for everyone but it is something I would thoroughly (I can't think of the word I want to say, cognitive impairments) 'nicely insist' people look into it. It really helped me.
Recommend!! Sorry thats the word!
GTVS what?
Totally agree, I was in the same boat and 5 years period free was bliss!
Thank you for the tip! I definitely want to look into getting more control over my period, it's just finding the thing that works perfectly... 😏
terri-louise Ó leathlobhair I feel horrible every month.. I don't know how my body would handle hormones (I worry about blood clots as well). Do you know how high the risks are with that?
Coming back to this video years later to learn about POTS to support my new friend when we hang out
I just got diagnosed with POTS after six months of constantly passing out, and it's something of a relief to see someone else who spends so much time on the floor. It's been hard to relearn how to live around it, so thank you for sharing and being so positive!
Needed a reminder to stop pushing myself while I can't stand up because I'm blacking out 😅
Besides being adorable, you are helping so many people (including myself) who are dealing with a variety of diseases. Your spirit and your smile, despite having to go through so much, brighten my day and help me deal with my illnesses too. You're wonderful!
I was diagnosed with PoTS when I was 10 and I have always felt so alone in my experience. It was hard to explain to others why I had to be super careful and why I had to sit all the time. After seeing this video I was so glad that I wasn’t alone in my awful experience and that there are others out there just like me. Thank you so much for making this video and helping so me and many others realize that they weren’t alone!
I suffer from long periods as well, and was placed on a birth control tats continuous. I only have it once a year, and it’s completely healthy. I wish you much happiness, you are an incredibly strong person ❤️
I was recently diagnosed with POTS! Thank you for such a lovely video. I adore your vintage style and the way you communicate your ideas with such a delightful sense of humor ❤️
I absolutely love your mindset. You have such a happy and cheerful energy about you despite what you go thru. I see you as one of the strongest people of people. Keep up all the inspiring messages and stories and showing people a better way of dealing with whatever condition they're going thru. You're amazing
I have EDS, not feeling too great today, but this vid uplifted my spirits😊 thank yooouuu 💜✨
Binky Boo I hope you feel better soon.
You're so welcome lovely, I hope you feel better soon! x
Binky Boo Hope you feel better soon. I have EDS as well. :-/
I have EDS too. But I am very rare because I have all types ♥️ take care zebra! xxx
Hello fellow zebra! Keep your chin up😊
I've been watching your videos for so many years and still had no idea I had EDS, POTS, MCAS, etc until a few months ago. The rewatch of all your videos has been so enlightening and educational! Thank you so much for your positivity and being an inspiration to me:)
All these tips are 100% absolutely spot on! You're human kills me, I love it! I was diagnosed in January with Post Viral Fatigue Syndrome & Myalgia which my CRPS just loves!! Lol. I tried TO work through my conditions and basically couldn't get off the couch or out of bed for nearly 2 months, so yeah, take it slow. Hope you fèl better soon Jessica xx
Sorry to hear about your struggles Kirsty, I hope you feel better soon as well xx
Are you fine now?
I know this video is 7 years old, but I was diagnosed with POTS back in October. mine is a relatively mild case but it's still affected my life and having a diagnosis has given me so many answers. thank you for making such an informative video about it!
I am a rare case... I have an Idiopathic Intracranial Hypotension and a CSF Leak trough my nose. I suffered badly for 5 years in bedrest. The deal is, I am just 21 now. I was a year free of symptoms, but I got them back. I hope it's not but a mere flu. I wish somebody had talk to me like you did in this video, you're a real treasure. BTW, I am not deaf, but I attended an otherwise all- deaf school here in Finland. Greetings
you seem so bright, cheerful, and energetic for being symptomatic in this video 🥺 i can’t do anything when i’m symptomatic, i can barely talk sometimes
I love it that you filmed this from your beautiful carpet. My latest blackout was in 95degree heat - and even tho I aimed for a soft grass landing, my head still hit the ground pretty hard. It’s been over a month and I still get “ice pick” headaches. Yesterday I finally got a CT scan - fingers crossed that the ‘damage’ is fixable!
I have pots, but I dont fall down, I just lose half my vision, my parents wouldnt believe me so I have nightmares now realizing I was driving 2 hours every day for like 7 years with an undiagnosed fainting condition(that I was not treating like I do now, lots of salts and liquids) because no one would listen. And I was punished for pulling over in the car when I felt unable to go on. Because you know, I was obviously just lazy. I do remember I would guzzle pickle juice whenever I had the cance though, probably my body just sending what it needed.
I just wanted to come back here and say I first learned about pots from this video about a year ago and through denial to 'shit maybe I have this' to waiting for doctors to take me serious and then when they did waiting to get tested, I have my diagnosis now, as of last Thursday.
Thank you so much for this video, I'm finally getting help for something I've been struggling with since my teens. I really couldn't have gotten to this point without you.
I already follow all of these tips :P i have MS, not pots but i think these tips really apply to most chronic illnesses. Well done, i love your channel. It really cheers me up:)
I'm 18 and have epilepsy, hypoglycemia, chronic fatigue syndrome and work a full time job. Your videos have really helped and you are so beautiful. Keep up the good work.
I just recently came across your videos and I really appreciate them! Your style and grace is amazing and is made even more so in the face of chronic illness! I have multiple sclerosis and several other issues. Some days it is SO hard to get up and face the day much less face it with a smile. I love your vintage hair styles! I am SO excited to try some of the tutorials! I often feel pressured to push myself too much by many people in my life. Its very hard to find a balance in life to say I am at my limit. I don't want to feel like I am less than other people because of my illness. Thank you for this video. I am going to work on trying to accept that I am not less because of my illness.
So I've been sick with CFS for about five years, and done quite a bit of research into that. I've also known people with PoTS, but assumed it wasn't something I'd be dealing with because I knew vaguely that it was a cardio thing, and I thought my heart was fine.
I got a couple of minutes into this video and went '........oh' and googled PoTS symptoms. I found the site you later recommended and reading through the symptoms was like reading a call-out post written specifically for me. As in, things I'e suffered all my life. My Mum then got me to stand for ten minutes (a real issue given as it's late and I'm having a not-so-great CFS flare up at the moment) to test my heart rate and blood pressure as suggested by the site and the results were fairly consistent with what the diagnosis page says are required.
I'm making an appointment with my GP this week. Thank you so much for the videos you make. I only found you today and I feel like they've already made a difference to me. I was having a hard time mentally and I feel a little less alone and a little more valid
I have COPD with quite bad emphysema and I watch your videos when I'm having a bad day. Or a good day, whatever - I just love listening to you, your wife and friends. Thanks for the many tips on coping with chronic illness, really invaluable and it's not the kind of information doctors will give you. Big hugs!
Its so nice to have someone else who knows what I'm going through
I've known I had POTS for forever but was just recently diagnosed. I cannot tell you how comforting it is to find others with this condition. Thank you. Finally a video the non pots people can y understand. Thank you!
Oh yes the bright lightning, lights & sounds are hard for me.
People like you give me the strength I need to wake up each morning and face the day
I used to spend hours on the Sims 2! You got me a big case of nostalgia... and yes we ALL do ourselves, I use to create me and my crush of the moment and fantasize a perfect lesbian life.
Thanks for taking the energy to make a video.
hope you'll be better on your next video,you still looks cute even if you're just lying on the floor making videos that inspires us
Thanks Rizza xx
This is basically my life now. Dizzy, fatigued, can't stand without feeling like I'm gonna faint. Vestibular migraine was my first diagnosis, hoping this isn't what I have. Stay strong you are a beautiful person and inspiration.
Hi there! ❤️ Also a POTS sufferer here. Do you also have POTS/Fast heart rate when sitting and lying down, or do you just suffer from it when standing? Also, do you take betablockers? If yes, how much mg do you take? Thank you! 🙏
Got diagnosed a couple weeks ago and scared crapless for another thing to be added to my list of growing diagnoses. Thank you. Thank you thank you thank-you. For validating, being relatable, searchable, and honest about POTS. And yes, you should get better lights. Better softer lighting is always nice on headaches, says the 10 year chronic migraine sufferer.
I am not dealing with the exact medical issues as you, but I do enjoy your vids! My health challenges include fibromyalgia, asthma, and now possibly cushings. I get stuck on the sofa, not the floor, cuddling with my dog, air conditioner AND industrial sized fan blasting. My wife kids that I'm trying to freeze her out, when in my reality, I'm just hoping to avoid spontaneous combustion! Cheers from the U.S.
I've also felt before like I was victim of spontaneous combustion ha ha
Big hug from UK x
Jessica, you are so right! My first year post kidney transplant I have tried to take on too much and basically ended up not really doing anything that great! 🤦🏻♀️I have now decided to focus on my main things that I want and I have limited my self to those! I have also come to the realisation I can't do everything in my first year of my kidney transplant! You really are a clever women and a great ambassador for invisible illness! I really enjoyed your advice! Hope you are feeling a bit better today! 😊👌🏻👍🏻 ps I'm Mini New Yorker on Instagram! 😊 one and the same!
Yes! Exactly! One step at a time and you'll get to where you want to be- even if it takes a little longer 😉 x
Jessica Kellgren-Fozard yes exactly I actually said to my hubby sometimes we have to zig and zag a bit instead of getting there in a straight line! It might take a bit longer but I will be happy when I get there! ☺️x
Something so grounding (no pun intended) about physically seeing someone else being so pretty and functional and eloquent and generally lovely all while lying on the floor. Obviously you're not that put together all the time, and probably quietly screaming with pain underneath, but it's just nice to see ourselves reflected in such a flattering way, if that makes sense
So I just found that you have so many of the same conditions I do. You said you have a connective tissue disorder as well. I do to! I have hEDS. So do my two daughters. My younger daughter and I have POTS. I spend so much time in bed. I had a hysterectomy at 28 years old because I had such bad “lady issues”. It’s so nice when I find people who are “like me”. But also sad that others are “like me”. I hate living my life by the spoon theory. I wish I had unlimited spoons. I’m sure you have heard of the spoon theory. It’s just the best way to explain chronic illness to “normal” people.
Thank you so much for making this video!!!! It's good to know that I'm not alone in this! Love your humor and personality!!!
Also, period hack. Ask your doctor if there fine with ya skipping the placebo pills in the birth control packs. I know a few people who do this. It's a game-changer, especially with people like us with chronic illnesses!
Watching this laying on my bedroom floor in pain while trying not to choke on my tea lol. I love watching your videos on my bad days because they make me so happy
I love that you filmed anyway while laying on the floor. It the perfect way to explain POTS. ❤️
Wait a minute you have pots too!!!! I've been watching you for so many years!
I take cordyceps, bucthers broom, iron, and Chlorophyll for my pots, and it really works! The other day i stood up for almost an hour with no palpitations and stuff
Are you cured now?
I was diagnosed with PoTS in secondary school. I never really understood what it was apart from the fact it made me pass out, and increased my heart rate. But recently at work it’s gotten a lot worse. I work in a warehouse so I’m constantly bending down, standing up… and of course, feeling faint. It really sucks because although my mum knows about this condition I have, I still feel incredibly guilty and judged when I have an “episode” (as I like to call them.) I pass out fully, maybe 3 times a year. But my more common symptoms are, light headedness, weakness, brain fog, deafness (during an episode), and blindness (also during an episode)
My doctor suggested salt, and water to help when I got diagnosed after fainting one day. But I didn’t get given any medication.
I’m reading that a lot of people had to do a table tilt test. But my doctor literally checked my heart rate, from just standing up, and that was enough to know I had this condition. It’s terrifying. I end up in tears over it as it scares me a lot.
There was a day in school I ran from the hub to the field (about 100 yards away) and my heart rate increased so drastically, (it was something crazy like 167 bpm) I had to get sent home. Having a heart rate monitor that I can just slip on my finger is a god send. I record everything down. I test my heart rate every morning when I wake up, and then when I get out of bed, just to have the documented data.
I try not to push myself at work, but unfortunately I’m not hitting the recommended performance. I’m hoping they give me some mercy, due to this condition, but, we’ll see.
This video taught me a lot. So thank you. It’s nice to know I’m not alone in this.
Also, you are super pretty! ❤️
I don’t get 9 day periods but 10 day PMS and 5-6 day periods... that’s half of the month dedicated to feeling utterly terrible.
my wife was just diagnosed. ugh what a change. I appreciate your tips.
Omg I have pots too! I’m so glad you’ve explained this to such a big platform
Update?
@@TheBushRanger. recovered!
I have different illnesses but the life tips are the things we are all told to do but it's much more reassuring that others have to do these steps too or wear the consequences. Thank you for helping us all be better to ourselves and each other :)
I fainted in the garden and fell heavily onto a low wall in 2018. After cracking some ribs and a getting a Tibial Plateau Fracture (aka broken knee) I’m now permanently in a wheelchair, I can’t stand, weight bear, bend my knee and I have a dropped foot. I was asked if I enjoyed being in a wheelchair and I was accused of tensing my knee. I’d had an ENG test which showed I’d got nerve damage and it proved that I wouldn’t be able to bend my knee. I’d got damage to the Perennial and Sciatic nerves. I’m now diagnosed with Complex Regional Pain Syndrome and Osteoporosis as well as the many other syndromes and Autoimmune conditions I’d had before I fainted. Please be careful if you feel dizzy or faint because breaking some bones can be life changing.
Great video! I recognise the Ikea rug. A smaller version is in my house in our bedroom.
Avoiding or altering periods is of course something you can do. My memory is too foggy to remember the specifics but either the mini pill or progesterone can possibly be good for POTS. I tried whichever way round it is that's ok if you get migraines but it had the reverse effect from reducing periods!
Hopefully I'll remember the specifics of what I mean...
It is indeed IKEA!I'm definitely going to try and gain control over my periods, anything that helps is of the good x
The mini pill is a common term for the progesterone only pill
Missing periods has made a huge difference to me! I use the combined oestrogen progesterone pill and just skip the breaks. You do not need the breaks, some obs & gynae doctors say 4 a year is wise, but no evidence of risk. But not everyone can tolerate the hormones. The Mirena is good as the low progesterone only goes locally in womb so shouldn't cause side effects. But I think it's a bit less predictable to start with. Definitely worth trying to find a way to have less periods in pots though, alongside meds it's made a big difference to me.
Lying flat on the floor is sometimes the only way i can get comfy. My back aches so much I feel sick & I get an overwhelming need to lie flat on a semi hard surface. So comfy & relaxing. Only happened after my Spinal Cord Stimulator implant due to weak back muscles. Thank you Jessica for helping me to explain to my family by using this video. I'm forever indebted to you for your help.
Hi Kirsty! So glad this video will be helpful to you and your family, I'm very pleased! x
Thank you for making this video! I have POTS as well and would love to make a video explaining what it is but I always worry I'll get my information wrong or leave something important out. I just have to get my information together lol. I'm so happy to come across videos that spread awareness! Great job!
Thank you for sharing, you inspire me to talk about my illnesses and be open on my channel too xx
Hi Beverley, thank you for watching! x
I was just diagnosed with POTS today. So this is so incredibly informative i haven't fainted before thankfully. The dizziness is very real though for the longest time i thought it was just from my chiari... Nope definitely not that. Getting hit with a box truck and ending up with severe Occipital Neuritis did not help. We're all just messed up little potatoes trying to get through the day. Thank you for your wisdom.
I was just diagnosed with POTS this week and have been feeling really frustrated and everything with it.
Thanks for sharing, it's helpful knowing other awesomeeee people have it.
We are awesome indeed ❤️
I've watched you for a long time (I'm also a disabled/ND QTPOC). My sister told me she thinks she has POTS recently. So naturally i thought of you haha!
I've been spending more time with her and her bf so I've literally seen them do the partner-grab-so-they-don't-fall thing multiple times! Thinking back, i can see these issues back in our childhood. They're also working on mental health related issues...
I'm scared for her and I want to help them in any way I can, so having this reference from someone I am already familiar with is so helpful and comforting. Thank you 🙏🏼🙏🏽
I'm also a potsie! Its awesome to see that there is a community of us somewhere in the world 😂 I was diagnosed as a child and have had to explain it to every doctor but one (my most recent cardiac specialist, also one nurse knew, that's it).
I was diagnosed with POTS in September 2019, at age 60. I've had it since I was 17 and got Mononucleosis. I use a power Wheelchair now and have learned many coping mechanisms.
Wonderful life advice! I'll be watching this the next time my disability gets the better of me❤️🌻👍
my parents have that exact rug too dang
I don't pass out but feel extremely lightheaded and was told I didn't have it bad enough compared to others which I'm glad I don't just undermines your feelings when people do that.
Not sure if this is worth the hassle, but Nexplanon does suppress periods on certain women. I've had maybe 3 periods in 4 years now. Also, you are amazing and your videos brighten my days.
Thank you! And also for the tip- I'm definitely going to be looking into getting more control over my periods x
@@jessicaoutofthecloset check your ferritin levels. POTS, flooding periods are my problems ( amongst many others)…it turned out I have been severely ferritin deficient for years after a horrific c section that also doubled as fibroid myomectomy ( due to having a fibroid as gigantic as a baby’s head). Since my hemoglobin was always low normal, no one thought to check that. Only this past year did I have a ferritin of 8 ( basically severely iron deficient). A year later, I’m at 30, still have those crazy symptoms and pots is now part of my life. Should really be 100 and don’t let docs tell you otherwise.
As a side note, you’re super charming and your videos are very catchy. Wish you the best!!
P.s. when I raised my ferritin to 30, my periods are now 3-4 days and I thought this was abnormal. Turns out, I was living in period - hell all of my life up until now and not knowing it.
I have Ehlers Danlos Syndrome (hypermobilty type) and POTS. I wasn’t diagnosed with anything until I was 37 yrs old, but I knew something was “off” since I was about 13.
I ve been watching your videos for a few months and love how informative they are. I had a bad virus and some tachycardia and dizziness so ended up in a&e last month and a doctor mentioned getting tested for POTS. And this morning I ve fainted for the first time and another doctor is pretty confident I have it but all I can do is wait for tests so I m trying to be a positive as you are in your videos.
Diet Coke is sooo bad for POTS and illness in general. I have POTS and it’s such a pain! Sending love!
Diet Coke has caffeine which dehydrates tou.
I've been seeing different doctors since I was 12 with complaints about dizziness and brain fog (trouble speaking, trouble moving my limbs, squeezing my hands) that gets really bad when im standing, walking or sitting up too long, when it's hot, and when I'm standing up. And no one ever thought to check if I might have pots.
I got meds for tachycardia lately and my heart still pounds like crazy and I realised a week ago that hey. Maybe this is the thing I've been looking for for the past 15 years 🤦
Just want to add my support to the people suggesting an IUD. I used to get 14 day periods (!!!), and once I got a Mirena, they stopped completely, as did my mood swings. I'm now on my second one and haven't had a period in over seven years--it's amazing!
I have pots and am finding it harder to work and was denied disability and fear the future. I enjoy your videos.
*watching this in bed getting so envious of you lying on the floor😂 you’re right the hard floor is so much better*
Jessica, thank you so much for explaining what PoTs is and how you have learned ways to handle it day by day. I love the way you can always be generally upbeat and positive in any situation. I sometimes have to snap myself out of the 'Woe is me' mood. I am learning so much from you, and trying to take every day as it it comes looking for the positive when a part of me does not. Again thank you so much for your upbeat personality. On a side note, I think that your hair and top coordinate well with your rug. 😎
Tricia B👗👗👗
Hello dear Jessica on the floor! The laying on a hard surface thing seems to be good for lots of illnesses. I, for one, always lay on the floor when I have a massive migraine. It's just so much better! I love your tips, by the way, and I think everyone should follow them, even if they don't have a chronic illness. It really sucks that you have an especially bad patch every time shark week hits. Why is there no solution for this by now? Ugh. I hope you have a good week going on with as little floor time as possible ❤️