![Lauren Brown](/img/default-banner.jpg)
- 457
- 470 536
Lauren Brown
Приєднався 19 сер 2022
#dysautonomia #posturalorthostatictachycardiasyndrome
#ehlersdanlossyndrome
I’m Lauren Brown and I have Hypermobile Ehlers-Danlos Syndrome and POTS. I want to raise awareness and offer support. By sharing research/news about POTS & EDS we can navigate chronic illness together!
I wasn’t diagnosed till 32 and didn’t find treatment till 40. I hope my story can help others find answers much earlier in life. I use memes in my earlier videos to express my frustration while attempting to add little humor to an otherwise depressing topic. I also find laughing instead of crying keeps me hydrated 😉
The term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to AVOID patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. If you hear hooves you assume it’s a horse until you turn around and see a Zebra.
New Episodes as often as I can!
Instagram @potszebra
#ehlersdanlossyndrome
I’m Lauren Brown and I have Hypermobile Ehlers-Danlos Syndrome and POTS. I want to raise awareness and offer support. By sharing research/news about POTS & EDS we can navigate chronic illness together!
I wasn’t diagnosed till 32 and didn’t find treatment till 40. I hope my story can help others find answers much earlier in life. I use memes in my earlier videos to express my frustration while attempting to add little humor to an otherwise depressing topic. I also find laughing instead of crying keeps me hydrated 😉
The term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to AVOID patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. If you hear hooves you assume it’s a horse until you turn around and see a Zebra.
New Episodes as often as I can!
Instagram @potszebra
A possible ROOT CAUSE of POTS? How Carbon Dioxide may help!
#POTSsyndrome #POTS #HypermobileEDS #HypermobileEhlersDanlosSyndrome #livingwithchronicillness #postviral #invisibleillnessawareness #butyoudontlooksick #youdontlooksick #invisibleillness #invisibleillnessawareness #spoonie #spooniewarrior #chronicillness #spooniesisters #chronicillnesswarrior #longcovidsawareness #Spoonie #SpoonieLife #SpoonieSupport #ChronicPainWarrior
#spooniewarrior #edswarrior #dyautonomnia
Watched Presentation from Dysautonomia International!
Mechanisms driving postural hyperventilation in POTS
Dysautonomia International
August 15th, 2024
Jacquie Baker, PhD
Postdoctoral Fellow
Department of Cardiac Sciences
Libin Cardiovascular Institute | Hotchkiss Brain Institute
University of Calgary
ua-cam.com/video/j-EvLttWwpY/v-deo.html
#spooniewarrior #edswarrior #dyautonomnia
Watched Presentation from Dysautonomia International!
Mechanisms driving postural hyperventilation in POTS
Dysautonomia International
August 15th, 2024
Jacquie Baker, PhD
Postdoctoral Fellow
Department of Cardiac Sciences
Libin Cardiovascular Institute | Hotchkiss Brain Institute
University of Calgary
ua-cam.com/video/j-EvLttWwpY/v-deo.html
Переглядів: 99
Відео
The BEST POTS Treatments have a few important adjustments!!
Переглядів 21821 годину тому
#POTSsyndrome #POTS #HypermobileEDS #HypermobileEhlersDanlosSyndrome #livingwithchronicillness #postviral #invisibleillnessawareness #butyoudontlooksick #youdontlooksick #invisibleillness #invisibleillnessawareness #spoonie #spooniewarrior #chronicillness #spooniesisters #chronicillnesswarrior #longcovidsawareness #Spoonie #SpoonieLife #SpoonieSupport #ChronicPainWarrior #spooniewarrior #edswar...
Ehlers Danlos Syndrome RETREAT in Utah! November 7-10th
Переглядів 6521 день тому
Ehlers Danlos Syndrome RETREAT in Utah! November 7-10th
Bladder Problems when you have Ehlers Danlos Syndrome or HSD
Переглядів 12921 день тому
Bladder Problems when you have Ehlers Danlos Syndrome or HSD
Another Ehlers Danlos Syndrome Gene Variant Found!
Переглядів 26628 днів тому
Another Ehlers Danlos Syndrome Gene Variant Found!
My Last Passive Aggressive Thoughts on the Olympics
Переглядів 696Місяць тому
My Last Passive Aggressive Thoughts on the Olympics
POTS Symptoms can be helped by several medications. Here’s how to get them!
Переглядів 225Місяць тому
POTS Symptoms can be helped by several medications. Here’s how to get them!
Gymnastics is an example of hypermobility that is used for good, not evil (EDS)
Переглядів 77Місяць тому
Gymnastics is an example of hypermobility that is used for good, not evil (EDS)
All About The Ehlers Danlos Society's Global Learning Conference 2024
Переглядів 144Місяць тому
All About The Ehlers Danlos Society's Global Learning Conference 2024
Update and The Ehlers Danlos Conference is next week!
Переглядів 129Місяць тому
Update and The Ehlers Danlos Conference is next week!
Gene Variant IDENTIFIED associated with Hypermobile EDS (hEDS)!!
Переглядів 3852 місяці тому
Gene Variant IDENTIFIED associated with Hypermobile EDS (hEDS)!!
Having a Chronic Illness is a Full Time Job
Переглядів 1963 місяці тому
Having a Chronic Illness is a Full Time Job
Weird Things that are related to EDS and POTS.
Переглядів 3364 місяці тому
Weird Things that are related to EDS and POTS.
Primary Care Physicians are missing the mark with Ehlers Danlos Syndrome
Переглядів 2604 місяці тому
Primary Care Physicians are missing the mark with Ehlers Danlos Syndrome
Emergency Care Plans when you have EDS!
Переглядів 1704 місяці тому
Emergency Care Plans when you have EDS!
7 years of Gaslighting! Maybe find the root cause of the problem?
Переглядів 1885 місяців тому
7 years of Gaslighting! Maybe find the root cause of the problem?
Ehlers Danlos Syndrome, Fainting & Syncope
Переглядів 1635 місяців тому
Ehlers Danlos Syndrome, Fainting & Syncope
EDS and Stomach Complications..this list will help!
Переглядів 2455 місяців тому
EDS and Stomach Complications..this list will help!
Overview of Emergency Care in EDS & HSD
Переглядів 1695 місяців тому
Overview of Emergency Care in EDS & HSD
I need to Vent…because it seems like no one cares
Переглядів 1826 місяців тому
I need to Vent…because it seems like no one cares
This is the BEST Physical Therapy approach if you have Hypermobile EDS!
Переглядів 3146 місяців тому
This is the BEST Physical Therapy approach if you have Hypermobile EDS!
Can you be a blood or organ donor if you have Ehlers Danlos Syndrome?
Переглядів 2077 місяців тому
Can you be a blood or organ donor if you have Ehlers Danlos Syndrome?
Breaking News! An EDS CLINIC is coming to your state!
Переглядів 2687 місяців тому
Breaking News! An EDS CLINIC is coming to your state!
Anxiety & Hypermobility Are you anxious and have Ehlers Danlos Syndrome?
Переглядів 2448 місяців тому
Anxiety & Hypermobility Are you anxious and have Ehlers Danlos Syndrome?
Thumb, Wrist & Hand Pain when you have Ehlers Danlos Syndrome Surgical options that can work for us!
Переглядів 3438 місяців тому
Thumb, Wrist & Hand Pain when you have Ehlers Danlos Syndrome Surgical options that can work for us!
...Yes, the cartoon picture on the wall (in the background,) of the woman,... perfectly says what so many un zebras don't get, but, have the balls to say to EDS people, or likely think. 🫨🤨 It can make one's hand want to accidentally massage that person(s) face, (but can't obviously. ) That's just something to fantasize silently to one's self. 😊 Where can I get a copy of that picture ? 😖Ughhh,... x's 1,000 !
I love your informational videos with your sparkling personality. ✨️🦓
Isn’t Ed’s considered the root cause?
Only one of them…people with long Covid have POTS too so I have a feeling there are other systems in our bodies involved 🤷🏻♀️
Growing up without prpoer diagnosis, my Mom would say ye ol' "oh you take after me and your granma, you probably have anxiety and panic attacks" and hand me "The Hyperventilation Brown Paper Lunch Bag" make a cup of warm milk that may have been medicated lmao, I was a kid, tell me no school then but lay down and watch our tape - she had an anxiety-attack-day VHS tradition, only focus on relaxing with my bag and milk watching "What About Bob" with Bill Murray 😂 Sometimes I was being sent home from the nurse bc I'd feel "heart attack" symptoms that were actually my EDS and intolerance of unforgiving societal norms (accessibility wasn't any buzz term). So forcing me to adhear to the school's proposed sleep, eat and breathe schedule instead of my body's... Being little I thought I was physically dying but told hush up you have hysteria like all the women, you'll be prescribed benzos just like us!). My Mom wasn't prescribed ativan til after she was sexually assaulted and raped, her Mom(granma) was put on the same medication and my house was dubbed a house of mentally ill anxious bumbling toxic women. I wish my granma was alive bc I was introduced to "Grey Gardens" and that made me think of my house but the poor-people edition for present day. I think that's why me and my Dad were besties. As an oldass adult, after all that gaslighting and trauma of there being perpetuated health rumors of old, receiving an Ehlers Danlos syndrome diagnosis changed my whole life and whole life perspective. You could never be more grateful other than also surviving that there are still people who believe every little thing is some kind of mental illness or addiction, but they just need updated. It's rife, here's to a better, more informed and less insidiously misinformed, gaslit future for all ✌️🕊️ 💚 If I have physiological needs like hell someone is going to pretend it's whatever paych disorder pleases their agenda🧐🥱😤
Is it means that good old breathing into bag can potentialy help?
Possibly?! Worth a try!
Who is she? What system? What symptoms?
Thank you for always sharing important information 😊
When I increase my salt, my feet and ankles swell up. Then I get scared by that. 😢
Interesting! Yes, you have many many rats in Boston. I’ve been covering a few of those Canton rats. I don’t understand the nice thing either. And I needed to hear you say, don’t take crap from anybody today. Excellent, reminder. Thank you ma’am❤
❤️❤️❤️
🦓❤️🦓❤️
💙💙💙💙
I'm so glad you made the video this long and included all of this information. Thank you so much. I'm on my diagnosis journey for ADHD and other things. I really appreciate this.
Thank you. Ive had POTS since forever but it didnt really bother me until now.
Wow, is there a link to that research/ scientific study? I’m so interested in reading /watching a deeper explanation on this!!! I wonder if this would explain why I would get super over hot thighs at night several years ago and have to do gymnastics with my doona to have my lower legs and feet covered and my upper body/arms covered but the very middle of me thighs and middle section over heated..! Fascinating…. So it could be other reasons as well, not just MCAS/dysautonomia!!!😮😮
ua-cam.com/video/j-EvLttWwpY/v-deo.htmlsi=5NW4AJbpeaRlydEj
High waisted compression shorts have always helped me more than the socks. It's nice to see scientific proof. And building up exercise with resistance bands has helped me so much, even though it took close to a year to build up to anything that would look like actual exercise.
Compression leggings have been great
Yes, this makes sense bc when my symptoms crop up, I tend to feel it in my gut, makes me tend towards my posture favoring fluid in like, my front "pouch"?! My ankles and entire legs still swell varying, but I'll feel fluid fullness in my gut and abdomen which may explain eating/drinking/bathroom stuff! Lol
Yes! I need salt so much. Especially when it's really hot. Not the normal amount. Way more. If I stay in top of it I don't have issues
Oh wow, so that's really interesting and helpful to know. I wonder why there?
🦓 How many Dr.s are in the world, that treat patients with P.O.T.S ? Its so frustrating. All these poo poo studies. Uggh! In an IDEAL world,...😖 ONLY the Dr.s ( that ACTUALLY suffer with P.O.T.S PHYSICALLY too, *THEMSELVES,) ...& can *PERSONALY UNDERSTAND ( *THEMSELVES ) 🫤 BEFORE they ""say"" what automatic routine protocols on their (again, basic poo poo studies,)... are (for me) actually the ones who have my attention. Other than do this, & this, & it SHOULD ""mostly"" work by just doing this & this, & then pretty much, > VIOLA, ""poof,"" symptoms minimized. Only a Dr. *WITH P.O.T.S. can relate. That would be the one who'd perk my ears up. THEY, are the ones WHO, would/ & could, ONLY authenticity be (again, just for me,) the ones to DO, & to put forth P.O.T.S. studies advice, to P.O.T.S. people. Yes, this goes for many various diseases genetically, or otherwise. The personal experience angle in other words. But, I know, I know, this is not realistic! I'm just sayin'. Oh, but wait, most Dr.s who have P.OTS, themselves with all it's mirad of syptoms,... probably often won't have the physical or emotional energy to make it through all the years & everything it takes to get through earning that degree. Yes, there are exceptions. No need to mention that to me.😖 All EDS & P.O.T.S sufferers, will be able to read in between the lines, & understand my real point. 🦓 🦓 Stay strong, & keep your hoofs on the ground. 🦓 Keep up with your videos Lauren. You're much appreciated. 😊
Have you tried LMNT, it works great for my POTS.
Tysm for sharing
Yes! I just say thanks, it's my mutation, I grew it myself 😂😂
I've been told I'm hyper mobile. My shoulder's come out of the sockets easily. My knee's and hips try to come out.
I was jus like WAIT HOLY WHAT?!?! *GooglesASAP* -- OK, here is an informative link for those who need to believe in miracles again more than the Godspeed it takes for another peepee trip! 🎉❤ www.ncbi.nlm.nih.gov/pmc/articles/PMC7210232/#:~:text=The%20posterior%20tibial%20nerve%20is%20stimulated%20by%20inserting%20a%2034,cephalad%20to%20the%20medial%20malleolus. Holy craap listening to u tell us this had me like 🤯 are you serious?!?! MFKing THANK YOU!!! #ZebraWarriorsAreBattleBuddies #BattleBuddiesAreZebraWarriors
❤️❤️❤️❤️❤️❤️www.ncbi.nlm.nih.gov/pmc/articles/PMC7210232/
I think that sports is all about cheating, bullying and politics, so I feel her pain. It simply isn’t fair, and that’s the way we like it.
Thank you so much for the kind mention!
❤️❤️❤️
Try daily ANTIHISTAMINES, Zyrtec 10 mg. and Famitodine 20 mg. to quiet overactive Mast Cells in the bladder.
The audio clips are wayy too loud
❤
Haaaaaaa 😂those PT exercises I could be doing😂😂😂❤🎉
What a great idea 🦓
Sovereign Silver
Taking the zebra book you may enjoy ❤
I am shocked at what happened to you and your fmaily😮thats awful 😢 I am so encouraged by your hilarity and grit ❤❤❤
❤️❤️❤️😘
Angry Mast Cells in the bladder will mimic Urinary Tract Infections, due to Mast Cell Activation Syndrome, whether Dx or not. Now IF I present with urinary frequency and pain, I take OTC meds: 1) pyridium 2) h1 Zyrtec dose 3) H2O Famitodine dose Anti- histamines DO NOT TREAT INFECTIONS. THEY DO QUIET ANGRY MAST CELLS, in your bladder. 😎
👏🏼👏🏼👏🏼
I was diagnosed with Interstitial Cystitis due to urinary pain and frequency. I did NOT have the Classic IC "Hunner's Ulcer" on my bladder. What I did have was very ANGRY Mast Cells on my bladder. My EDS expert Geneticist reported that EDS patients have a Genetic vulnerability to develop Mast Cell Activation Syndrome and/or POTS (Postural Orthostatic Tachycardia Syndrome). My IC symptoms COMPLETELY disappeared when I began taking daily Zyrtec and Famitodine after YEARS of severe pain.
Is that a man?
😢
What's potz !?!? 🤔 😅 English isn't my native language
Wow hope I can make it
Omg, I never knew this I didn't know why I was having a hard time washing my hair because I wasn't standing up at all, thank you 🙏💕
🥰😘
💙💙💙 that sounds amazing
Only all the time
Wish I had known this stuff before having kids. I had to go on an anti-histamine diet, pelvic floor machine from my acupuncturist, no caffeine or diuretics, and creatine loading which increases water retention. At least it's under control now... = (
😂 the Elmer’s glue analogy really works 😂
Uh huh My feet I thought it was some kind of athlete foot or tinier but Dr said nope, it’s dry skin Noticed it in my teens and have had it on n off ever since n now 47
Same!! My dermatologist tested the skin and was like yah it’s normal…soooo it’s normal that it is peeling off? 🤪🤣
Yes, yet another weird EDS thing, that I thought was just me.
No, I haven't
O yes
A bit on the bottom of one foot.