#Periodicparalysis

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#Periodicparalysis Reel by @heartsongrenewed - 🚫 It wasn't genetic. 🧬 🚫 It wasn't incurable. 🚫 It wasn't degenerative. 🚫 It wasn't my ion channels. 🚫 It wasn't my mast cells. 🚫 It was
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@heartsongrenewed
🚫 It wasn't genetic. 🧬 🚫 It wasn't incurable. 🚫 It wasn't degenerative. 🚫 It wasn't my ion channels. 🚫 It wasn't my mast cells. 🚫 It wasn't my connective tissue. 👍 It was my nervous system. 🧠 And it was trying to keep me safe. In diving deeper into #thesecretlanguageofthebody, I discovered that every symptom of my "genetic Hypokalemic Periodic Paralysis" was actually a neuroplastic symptom of the nervous system state of FREEZE. This state feels like pushing down as hard as you can on both the gas and the brake pedals AT THE SAME TIME. Listen to some of the ways my body told me that I was in freeze (and NOT a helpless victim of a rare genetic disorder like I was told): - physical rigidity - immobilization - emotional numbness - difficulty making eye contact - flat affect, blunted facial expressions - a sense of disconnection - depersonalization - dissociation - physical tension and pain - difficulty speaking - amnesia - lethargy - poor appetite - insomnia And... - preparation for death. Yep. It was when I had been stuck in freeze for months that I decided to go on hospice and stop the TPN that was keeping me alive. I truly believed I was dying. I even wrote goodbye letters to my kids. But today I am HEALED. 🙌😭 And I keep sharing this information because I know there are others on the verge of giving up who, if they only knew they were actually just stuck in a survival state, could dare to hope... and heal. ❤️‍🩹 God is so, so good. He has given you everything you need to not only heal, but THRIVE. If you want this, but don't know where to start, or if you've been on this journey but feel stuck or stalled out, that's what I'm here for. ❤️ 🫂 The links to my coaching options are in my bio. XOXO Angela *The information provided on this page is for general knowledge and educational purposes only and does not constitute medical advice. Always consult with your physician or other qualified healthcare professional regarding any questions you may have about a medical condition.
#Periodicparalysis Reel by @zara.bethx - ambulatory wheelchair users exist! 🙌🏻✨ …and they are valid ❤️ i personally use a wheelchair mostly for my neurological condition called FND, which
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@zara.bethx
ambulatory wheelchair users exist! 🙌🏻✨ …and they are valid ❤️ i personally use a wheelchair mostly for my neurological condition called FND, which causes periodic paralysis, tremors, leg weakness, dystonia and a loooot of chronic fatigue/exhaustion! 🧠 but everybody is different, and reasons for people needing mobility aids may be completely different - but this doesn’t mean they aren’t as valid or that they don’t “need” their wheelchair as much as somebody else ♿️ - #ambulatorywheelchairuser #chronicillnessawareness #paralysis #wheelchair #awareness #disabilty
#Periodicparalysis Reel by @chronicallypersevering (verified account) - My first walk with my service puppy! One day last week everything changed in the best way possible, Pamina came home. She is so full of personality
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@chronicallypersevering
My first walk with my service puppy! One day last week everything changed in the best way possible, Pamina came home. She is so full of personality and love! Pamina and I even went on our first walk together! With my hypokalemic periodic paralysis, my biggest trigger is the cold. One thing you can always count on is that November in Michigan can be cold, but I felt like I was dreaming when we were able to sneak a few steps in before the snow and cold hit. After the snow and cold hit, there’s no guarantee that I’ll be doing much walking outside until it warms up(although I have a dream of getting a few steps in with both Piper and Pamina). Pamina has already learned about walkers, wheelchairs, and forearm crutches. She is learning to walk next to people walking without mobility aids, walking with mobility aids, and next to me in my wheelchair. 98% of the time I use my wheelchair to get around, but since my disability is ever changing it is important for her to grow up learning about all of these different ways a person can move through the world. Pamina loves her wheelchair rides! She relaxes, sits very still, and enjoys the ride on my lap while I roll wherever I’m going! How are my service dog, Piper and Pamina doing? Well, I’m not sure he’s ever been happier! He is loving being a big brother. They play together, nap together, Piper has been teaching Pamina how to be a good citizen, and they are just loving life together! They are the happiest little pair! They’re all I need underneath my tree! PS do you think Pamina should be featured on an @americaneagle gift card? Let them know!! #AEGiftCardStar Video Description: Cienna, a white blonde woman wearing a cream chunky sweater, long denim skirt, pink ugg slippers, a tan coach logo bag with strawberries on it and gold glasses walks across a bridge in the woods with Pamina, a roan lagotto romagnolo puppy wearing a cream sweater and pink plaid backpack Cienna Sweater: @hm Skirt: @amazonfashion Shoes: @ugg Bag: @coach Forearm crutches: @vivehealthusa Glasses: @rayban Cannoli necklace: @catbirdnyc Other necklaces: @tjmaxx Pamina backpack and collar: @amazonpets
#Periodicparalysis Reel by @chronicallypersevering (verified account) - I would love just to be stuck by yourside, Pip! This week Piper turns five! Can you believe it??! I wouldn't want anyone else by my side! Piper ha
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@chronicallypersevering
I would love just to be stuck by yourside, Pip! This week Piper turns five! Can you believe it??! I wouldn’t want anyone else by my side! Piper has been stuck by my side through it all and this was his first time seeing me walk in years! Piper is my medical alert and mobility service dog, trained exactly for what I need to mitigate my disabilities by @miservicedogs . Now Piper will always prefer a roll to a walk because I can go much faster, my health is more stable, and I am WAY more fun. That doesn’t mean he wasn’t over the moon seeing me take a few steps! Piper was one of the first beings on this planet to know I wasn’t breathing on my own. He has been by my side through getting my diaphragm pacemaker, learning to live with it, hiking Arizona and surfing the east coast, alerting to my hypokalemic periodic paralysis, having my ROHHAD come for me, in and out of the ICU, adjusting to me being a 100% non-ambulatory wheelchair user, always learning new tasks to mitigate my health, and now seeing me start to take my first few steps! I don’t know what I would do without you Pip! Happy Birthday!!!! #DisabledModel #disabledandcute #chronicpain #invisibleillness #disability #chronicillness #dysautonomia #lupus #migraine #babewithamobilityaid #hashimotos #servicedog #adaptivefashion #raredisease #periodicparalysis #diaphragmpacemaker #WheelchairGirl #DisabledFashion #StyleBlogger #StyleGram #WhatIWoreToday #OutfitInspiration #WheelchairModel #Vizsla #WorkingDog #ForearmCrutches
#Periodicparalysis Reel by @mustafafahad17 - Sudden weakness after a heavy meal or rest after exercise? ⚡ It may not be neurological - it could be Hypokalemic Periodic Paralysis. This genetic mu
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@mustafafahad17
Sudden weakness after a heavy meal or rest after exercise? ⚡ It may not be neurological — it could be Hypokalemic Periodic Paralysis. This genetic muscle disorder causes episodic flaccid weakness due to a drop in serum potassium, while sensation and consciousness remain normal. Early recognition and timely potassium replacement can be life-saving and prevent recurrent attacks. 🧠 Clinical tip: Always think of electrolytes in recurrent, reversible paralysis. 👨‍⚕️ Dr. M FahadMedComics Educating. Simplifying. Saving lives. #HypokalemicPeriodicParalysis #ElectrolyteDisorders #MuscleWeakness #MedicalEducation #DrMustafa MedComics ClinicalPearls Neuromuscular
#Periodicparalysis Reel by @chronicledfight - If you've been diagnosed with things like: Dysautonomia Fibromyalgia POTS IBS PMDD Depression ADHD OCD Anxiety disorder PTSD Hormonal imbalances Mine
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@chronicledfight
If you’ve been diagnosed with things like: Dysautonomia Fibromyalgia POTS IBS PMDD Depression ADHD OCD Anxiety disorder PTSD Hormonal imbalances Mineral & vitamin deficiencies Adrenal fatigue Chronic urticaria Endometriosis Lyme Mold illness Central sensitization disorder EBV Candida GERD hEDS MCAS CFS/ME Periodic paralysis FND Etc. Then it’s possible that in spite of these being REAL diagnoses and REAL symptoms (many of them even including genetic components) that by working with the limbic system in your brain and working to heal your nervous system you can radically improve the quality of your life! I received roughly 30 different diagnoses and spent the majority of over a decade almost completely bed and wheelchair bound due to debilitating symptoms. Once I learned how to support my nervous system and my brain, my life has been transformed in so many ways! I’m truly in my healing season after everything else I tried failed and it is such an incredible experience! Welcome to my little place on the internet where I share my story, share resources and offer advice to help you heal too! We all are on our own journey to healing and I hope that if you are seeking answers you’d consider looking into brain rewiring and nervous system work! It’s not a quick fix, but it is worth the work! My favorite resource for this work, and what I use personally, is the Restore membership through @sarahjacksoncoaching ! Sarah beautifully incorporates both cognitive and somatic practices into a grace filled daily schedule to help you build safety and trust with yourself and create an environment for healing! I’m cheering for you 💛
#Periodicparalysis Reel by @cadybell.eds - I have to tell you a secret 🤫 Not all wheelchair users are paralyzed or paralyzed all the time. People use wheelchairs for many valid reasons that d
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@cadybell.eds
I have to tell you a secret 🤫 Not all wheelchair users are paralyzed or paralyzed all the time. People use wheelchairs for many valid reasons that don't involve a spinal cord injury! Fragile bones, brain injuries, pulmonary disorders, and the list goes on. Even some with SCI can move their legs. I'm a wheelchair user because my joints dislocate over 30 times a day, I faint, and have periodic paralysis. (yes that's a thing ☺️) Some days, my joints are holding, my blood pressure is stable, and I can feel my legs allowing me to walk some! These days have become few, but the point is that even if a person can move their legs, they're not “disqualified” from using a wheelchair! Their need for a wheelchair is not any less valid or less needed than a person who is paralyzed. _______________________ #breakthestigma #ambulatorywheelchairusersexist #wheelchair #disability #eds #pots #fnd
#Periodicparalysis Reel by @harper.cole.roberts (verified account) - // Mobility Struggles //⁣ ⁣ You might know that I have FND (Functional Neurological Disorder) so I wanted to show a real example of how it affects my
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@harper.cole.roberts
// Mobility Struggles //⁣ ⁣ You might know that I have FND (Functional Neurological Disorder) so I wanted to show a real example of how it affects my daily life.⁣ ⁣ Everyone’s symptoms are different but my mobility and my legs that are my main symptom. Whilst I do suffer with periodic paralysis it’s mainly the flailing about that you see in the video. Like I’m being pulled around like a puppet on a string.⁣ ⁣ This is because there is a problem with the signal in my brain when I go to move my legs and it gets jumbled. So if I sit quietly usually my legs are still but when I go to move my brain receives the signal but not in the controlled movement pattern that you might expect.⁣ ⁣ Instead that movement translates into a wild set of kicks and shaking, making things like stairs, and obviously walking, incredibly difficult and dangerous.⁣ ⁣ I hope this helps you to understand life with FND and some of the challenges we face on a daily basis 💪⁣ ⁣ #FND #FunctionalNeurologicalDisorder ⁣ #Mobility #NEAD #NonEpilepticAttackDisorder #Seizures #PNES #Fibromyalgia #Disability #ChronicIllness #ButYouDontLookSick #Spoonie #InvisibleIllnessAwareness #Migraine #Coeliac #Celiac #Autoimmune #ChronicPain #Chargie #Spoonies #VestibularMigraine #Support #DisabilityAwareness #DisabledAndProud #DisabilityLifeStyle #StairShuffle #FridayReels
#Periodicparalysis Reel by @chronicallypersevering (verified account) - Cause you know I love you, Rituxan! A few weeks ago I traveled out to the Mayo Clinic in Arizona to get my first rituxan infusion. My doctors believe
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@chronicallypersevering
Cause you know I love you, Rituxan! A few weeks ago I traveled out to the Mayo Clinic in Arizona to get my first rituxan infusion. My doctors believed this could help me immensely and together we had some big dreams. Rituxan is a type of immunotherapy used to treat certain types of cancer and some autoimmune conditions. It works a little like Space Invaders. Rituxan enters your body and targets specific cells called b-cells(a type of white blood cell) and depleting them. These cells in autoimmune disorders are thought to cause inflammation, create some auto-antibodies, and more. For me personally we had BIG dreams. By depleting these cells, we hoped we could suppress the autoimmune activity in my body caused by a SLEW of conditions including Sjögren’s syndrome, autoimmune autonomic neuropathy, lupus, Hashimoto’s thyroiditis, ROHHAD, a clotting disorder, and more. These autoimmune conditions impact and cause other disorders like not allowing my g.i. tract to absorb potassium to help my hypokalemic periodic paralysis, creating severe gastroparesis, severe autonomic dysfunction and more. Some of the things we hoped rituxan would do were: -improve autonomic dysfunction -suppress autoimmune activity -increase energy -lessen Sjögren’s dryness -reduce inflammation -improve g.i. symptoms -improve absorption So far it has helped with a lot of those! It has allowed my g.i. tract to start working, improving my gastroparesis and absorption. In turn this meant I could start to absorb my potassium, my hypokalemic periodic paralysis is starting to improve, and I’m taking my first steps in years! Everyday I wake up to a body changing from rituxan and everyday I have new firsts and improvements! Rituxan is a potent immunosuppressive with major risks, side effects, and is not a first line treatment, but I love it in every single way!
#Periodicparalysis Reel by @iammellbell (verified account) - Here are healing stories from us to you, we hope it brings you hope, comfort & encouragement. We're cheering for you! @iammellbell "diagnosed with #h
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@iammellbell
Here are healing stories from us to you, we hope it brings you hope, comfort & encouragement. We're cheering for you! @iammellbell "diagnosed with #hEDS #CCI #POTS AAI, #FM, CFS, #endometriosis #scoliosis and other spinal issues, SIJ & #TMJ dysfunction #MALS. I have found the following things helpful: animal based nutrtion, prolotherapy, remedial massage therapy, chiropractic (gentle), trauma & emotional work/healing, brain retraining to a certain extent, somatic practes and nervous system regulation. I used to be dependent on a feeding tube, but now no longer need one." Hailey @hailey.fightforjoy "Diagnosed with hEDS, POTS, #hypothyroid #IBS, chronic migraines platelet disorder, anxiety, and more. I’ve healed from some of these and am continuing to recover from the rest using nervous system regulation (with DNRS and somatic practices), LDN, and animal-focused nutrition. Giving myself a lot of grace and patience has been a very helpful part of this process!" Becky @beckys_healing_journey I was diagnosed with EDS, craniocervical instability, tethered cord syndrome, POTS, MCAS, CFS and the things that have helped me most in my healing so far are the carnivore/low-oxalate diet, brain retraining and chiropractic adjustments. Rachael @ribeyerach "I was diagnosed with EDS, POTS, #gastroparesis #chiari, cervical instability, #lyme disease, and more. At my worst I was bedbound and I’m now thriving. The most helpful things for me have been an animal-based diet and nervous system regulation." Amy @chronicledfight I had nearly 30 different diagnoses but some of the most prominent were, Central Sensitization Disorder, Dysautonomia, Fibromyalgia, Periodic Paralysis, EDS, POTS, PMDD, and Severe Treatment Resistant Depression. None of the traditional treatments, medications, or natural remedies helped. Brain rewiring through cognitive and somatic practices has changed my life! Vanessa @yourgratefulguide "I healed from POTS #MeCFS #MCAS #ChronicMigraine #Vestibularmigraine #ptsd #Gastroparesis #agoraphobia #anxiety #smallfibreneuropathy (and more) by retraining my brain cultivating safety in my body through somatics, reprogramming beliefs and befriending my inner child."
#Periodicparalysis Reel by @victonation - When I was 10 years old, I was in horrible pain without a known cause. I was poked and prodded, but nothing showed up on the tests or scans. Each doct
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@victonation
When I was 10 years old, I was in horrible pain without a known cause. I was poked and prodded, but nothing showed up on the tests or scans. Each doctor I saw couldn’t explain the pain and didn’t believe my pleas for help. They said I was making it up, seeking attention, claimed it was “all in my head.”⁣ ⁣ After 3 years, a doctor finally listened to me. After just fifteen minutes I was finally diagnosed with Ehlers Danlos Syndrome, a very real genetic connect tissue disorder with no cure. ⁣ ⁣ The other doctors? They may have received 10 minutes of education on EDS (at most) and failed to recognize a case when it—when I—stood before them. ⁣ ⁣ Fourteen years later, I still live with daily pain. I’ve undergone 12 brain and spinal neurosurgeries to reposition my skull and fuse my entire spine. I’ve gone paralyzed over a dozen times and dislocated almost every joint more times than I could ever count. ⁣ Being RARE with Ehlers Danlos Syndrome, Hypokalemic Periodic Paralysis, Adrenal Insufficiency, Gastroparesis, Chronic Regional Pain Syndrome, Mast Cell Activation Syndrome, and other diseases is awful. I dread going to the ER where doctors aren’t educated about my conditions and can’t provide care when I desperately need it. Finding specialists to manage my rare, chronic illnesses is near impossible. And even when I am under the care of the world’s leading physicians, insurance companies and pharmacies attempt to insert themselves and stand between me and the therapies prescribed by the expert physicians. ⁣ It’s a never ending living nightmare impacting every facet of my life. It’s exhausting. It’s the reality of living with a rare disease. ⁣ Every day is a challenge and I am always fighting. Some days I’m strong enough to fight for awareness, other days I have to fight just to get out of bed. I don’t always win, but I always fight. ⁣ These are my stripes—because zebras exist. Show me your stripes. ⁣ 🤍🖤🦓💪🏼🤍🖤⁣ #RareDiseaseDay #ShowMeYourStripes #CareForRare #ButYouDontLookSick #TheZebraNetwork #ehlersdanlos #EDS #hypokpp #gastroparesis #crps #adrenalinsufficiency #addisons #pots #dysautonomka #disability #raredisease #chronicillness #invisibleillness #awareness
#Periodicparalysis Reel by @challapallibaburao - Periodic paralysis with Renal tubular acidosis as a intial manifestation of Sjogrens syndrome. #emmigunur #kurnooldistrict #ATMAKUR #gbssurvivor #Dr
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@challapallibaburao
Periodic paralysis with Renal tubular acidosis as a intial manifestation of Sjogrens syndrome. #emmigunur #kurnooldistrict #ATMAKUR #gbssurvivor #Dr #KIMS #Nandyal #jammulamadugu #banganipalli #kurnool #

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