I'm crying because this is me. I want to go home to heaven now. I'm only 32, with a family that I love, but everyone else left me. My church family abandoned me. Thank you for this video. You have no idea how it feels to not be alone. I have prayed many times for the Lord to heal me. All of my elders, who have seen healings in other people have prayed for me as well. This is not living.

THANK YOU THANK YOU THANK YOUUU!!! I cried with you during the entire video because FINALLY SOMEONE WAS SPEAKING MY LIFE!! I could feel and empathize with your pain and frustration SO MUCH. Your video has helped me so much!!! You really can’t understand how much you’ve helped me. I know we don’t know each other but truly from the bottom of my heart I love you and I’m praying for your continued health improvement. We share a faith in God and I felt so close to you watching your story! ❤❤

Thank you for sharing your story with us. Since the co19 nonsense, the amount of MCAS & POTS cases has grown like crazy. At birth, they say our gut/body is like an empty barrel. As we live our lives, the barrel gets full of crap. Eventually, it overflows & we get sick. Aside from food triggers... MCAS can be triggered by: microbiome imbalance, low vitamin D, hormone imbalance, trauma (medical, emotional), a bacterial or viral infection (Lyme & it's co-infections), chemical toxins, mold exposure, the co19 pokie, to name a few. You can eat a clean low histamine diet & still be reacting if you have not addressed those hidden big triggers. So please, look into those. Neels, you've suffered medical trauma. That is traumatic for your mind & body. Then fear (false evidence appearing real) sets in. You then are stuck in freeze mode. Your automatic nervous system is on high alert to try and protect you. (sympathetic vs parasympathetic). Look up Dr. Peter Levine's work (somatic exercise) and Bessel Van de Kolk's book The body keeps the Score. The limbic system feeds the fear. The subconscious is trying to help you, but is making things worse. There are programs out there to retrain your limbic system & or Amygdala. I'm not promoting them, just saying there are out there. (Annie Hopper, The Gupta Program, & Primal Trust) There is a guy named Dan on youtube at "Pain free you" . He has free daily videos that help teach you that your brain & body are ok. His work does not only apply to pain. The brain is misleading you & you need to kindly talk to reassure your brain that you are safe. Dan shares many pearls of wisdom for free every morning (6-10 minutes long). You are on the right path. Yes, we can heal our bodies given the right food & info. Our pain can be a lesson to help others. (pain to purpose). Be the victor, not the victim. You got this!

I am so sick of these doctors telling women they are overweight!!! They never believe us and then dismiss us!!! I am so sorry and mad that you had to experience this awful treatment!!!

You described those MCAS attacks perfectly. Same situation as you, waking up in the dead of night with all those crazy symptoms feeling like death. I developed a debilitating case of POTS at 29 years old, was bed-bound for a year and had to get on a year waitlist and travel out of state to eventually get diagnosed by Dr. Grubb, the US pots expert. You are VERY lucky that ER doctor actually diagnosed you!! I was taken to the ER, and they did nothing but stop my heart with adenosine bc it was 200 bpm and they discharged me that day with referrals into the community, none of which could help. I spent years seeing close to 20 doctors before I bit the bullet and saw dr. Grubb. I had no idea I had MCAS until two years ago. I would get those identical night attacks to what you described and every time I brought it up with doctors, they used my POTS diagnosis to tell me it was just that. The key was one night I had a few sips of red wine and had not had wine since my POTS diagnosis (7 years prior) and I went into a violent attack like what you described. It was the height of the pandemic so I decided not to go to the ER. The attacks kept coming closer together after that and were getting more violent. I was living with family at the time but would often ride out these episodes alone as I didn’t want to wake them. I was convinced they were a Brian tumor, cancer, epilepsy, that I was dying of something they’d never find and one day I got a gift in the form of full body hives out of nowhere. The last time I had hives i was three years old, yet these started out of nowhere and never went away. By this point, I had been officially diagnosed with POTS and hypermobile EDS (the year before) and my geneticist sent me right away to an immunologist who took on HEds cases since MCAS is so likely with that. She tested my urine and blood three times for all of the mast cell mediators and I was positive on the third try. Luckily, she began treatment before I even tested positive and I had a positive response to antihistamines, so much so that I only had one small “attack” in the entire year. You are right, most of this can be managed on it’s own through lifestyle and some of the supplements you mentioned. I had the great privilege of speaking on the phone to Dr. Theoharides, he is on faculty at a university where I receive care and friends with my doctor. He’s actually the top MCAS researcher in the world, no longer taking patients but fully focused on research. He has a company called www.algonot.com and they make natural supplements for MCAS patients. One thing I will say that I’ve learned though my immunologist is that having symptoms in more than two systems at the same time IS anaphylaxis. It’s just at a lower stage of it. It’s a misconception that anaphylaxis is just your throat closing up. With us, having tachycardia and BP drops AND nausea/ diarrhea/ vomiting is enough to BE in anaphylaxis. I do recommend getting an epi-pen from a provider, as every MCAS patient should have one even of they don’t have throat closing. You will be instructed to ONLY use it for throat closing, but it is good to have on your person because you can all the sudden present with a severe reaction for the first time. I recommend getting a formal diagnosis at some point for the MCAS with labs to prove it as you may run into an issue at the ER or when you need surgery if they don’t have an immunologist they can call to verify the right protocol. There’s a lot of pre/post op things and hospital drugs we should never have all laid out at TMSforacure.org and some people can’t get hospitals to follow them without an immunologist in their corner advocating as well. You should also wear a medical ID bracelet with the words “anaphylaxis risk” on it. Since I will deal with this my whole life being a “trifecta” patient (POTS/EDS/MCAS) I do have plans to be seen by Dr. Maitland because I know my management might change over the years. For anyone seeking answers for this you just have to be aware there is little to no knowledge among most doctors. Crowd source ( I like facebook groups) for the best doctors in your area and try to only go to docs that other POTS/MCAS patients highly recommend. MCAS is even more unknown than POTS, so there are literally a handful of docs in the entire US that can diagnose and manage and the majority of them went self pay. For those truly desperate with no local resources and willing to pay out of pocket and travel out of state Dr. Afrin, Dr. Dempsey, Dr. Maitland and Dr. Trevino are experts.

Functional Medicine docs and Naturopaths are DEFINITELY a big step in the right direction. But the CORRECT doctor for these issues is an ENVIRONMENTAL Doctor.

I know your plight. I have had Lyme disease for 20 years. My relationship with God keeps me sane. You will be in my daily prayers.🙏

Thank you for sharing your story. My 15 year old has all of the symptoms of POTS. Our whole family had covid in 2021. She started having the symptoms shortly after but we didn't realize until March of this year what it was. She gets headaches that have sent her to the ER. She doesn't sleep at night. Her brain goes into flight or flight. She was coming into my bedroom in the middle of the night telling me that she thought she was dying. Her heart hurts, her left side goes tingly. She has to sit while showering. Her legs turn purple. She gets dizzy when she stands. She is home schooled because she is so fatigued from not sleeping. The pediatrician wanted to send her to a therapist so she's no longer our pediatrician. The wonderful walk in clinic doctor ordered blood work and a brain MRI. The blood work showed low b12 and D. The MRI was normal. She has a neurologist appointment in August. God willing, she will get a diagnosis. I believe in the power of prayer. I will lift you in prayer. God Bless ~Michelle

Watching the video, I can feel your pain coming off you in waves. What a dark time this has been for you! The world would be a sad, sad place without you, Neely. I am so glad things have turned the corner and you have a direction now toward healing. I will add you to my prayer list! I have to believe that kayaking has a healing power too, when spring finally gets here. Anything I can do to help, I will do. If you need help loading/unloading your kayak on your car at home, I will help. At the rivers should be no problem, everyone always helps everyone else. Sending you a big hug, and kudos for your bravery in sharing all this.

You really could start a whole channel here just about Pots and MCAS. I just figure it out myself this flippin week! It's been years of "God where are you?!!!" Now I understand why Christ said the same thing on the cross... even He had to KNOW what it feels like. Thank you for making this personal video, it takes a lot of guts and vulnerability. Also, for those in body pain I have found LDN to be very effective. And, to be more socially unacceptable, taking small doses of Lorazepam when needed has kept me sane... well, mostly. lol. God bless you and all who suffer from the Invisible Illness.

Thank you for sharing! Praying you continue getting better.❤

Thanks for sharing and I hope your road to recovery is steady and easier everyday!

I am soooooo sorry you’ve had to go through this. Of all the experiences I’ve heard yours is the most similar to mine. I cannot begin to imagine how frightened you must have been on your own. Despite having a partner looking out for me I know all too well how lonely and isolated you feel when these scary things are happening to you ….especially in the dead of night. I’ve had several near-misses with needing paramedics and have also been in the emergency room with a suspected heart attack. I also had a mini-stroke a few years ago. It’s almost impossible to convey to people just how awful MCAS and POTS can be (I have both). Thank you so much for posting this video - it’s clearly helping others and most importantly it’s a reminder that YOU ARE NOT ALONE. I also want to give back and help others in some way and am in the early stages of researching MCAS (I’m a scientist) and creating an online resource that better reflects what patients like you really experience. Wishing you bucket-loads of success in your journey back to good health. Chris ❤

I was an athlete. One day my body just stopped “knowing “ how to function. I am one of the ones that can’t go out of bed in the morning. POTS, EhrleS Danlos , severe IBS, chronic fatigue, bed bounding some days. Doctors also tell me thing like I’m just burned out, Hypochondriac, unhealed emotional trauma and a long list. I’ll pray for you too! We will get better! 🙏🏻

Hello! I just subscribed. I can relate to almost everything you talked about. I too have POTS and histamine intolerances as well as ME/CFS and fibromyalgia. It’s a nightmare. I’m sharing my journey here on YT as well just so people like us know they’re not alone. Your story made me cry. I’ve been doing the carnivore diet and it has helped immensely with so many symptoms, but the pots, and a handful of other symptoms still remain at this point. I’m hopeful that’ll I’ll regain my health one day, but it’s been years and years of suffering. I too am a Christian and I know God hears us. At the end of the day it’s his will and I try to surrender to that. Thank you for posting your story! Big hug from Tennessee!

Thankyou for sharing! Your healing journey and your research and what is heloping you and most of all your hope in the Lord!❤

Hey Neely I just watched the entire video and I'm impressed by the way you've handled this horrible situation. I knew there had been some health issues but, didn't know to the extent you've been suffering. It is SO frustrating when you know something is wrong with you but, you can't get anyone to listen and take it seriously( I'm referring to the medical community). We all love ❤️ you so much and are so glad you are on your way to hope and better health! You are such an inspiration and so brave to share your story. I can guarantee it will helps many others! So proud to call you family! Much love, Kim

I, like one of the other commenters, have been part of a kayaking group for quite a while now but have never joined an event. I am sorry that many doctors dismissed your obvious and real health concerns because it was outside of their knowledge to understand why and explain concretely. I was fighting back tears as I listened to this. Thank you for being brave. Thank you you for being vulnerable and sharing. Most importantly, thank you for still being here. I don't know you, but those around you who have had you in their life be heartbroken if you chose differently.

I Can relate to pretty much every single thing you said in this video. But I think what hit me the hardest was you talking about how it changed your faith. That’s been the biggest struggle for me outside of physical symptoms. Thanks for being vulnerable with us and sharing your story. I appreciate you more than I can say! ❤

So glad you put this out. So sorry for your suffering. What helped me.. improved my methylation. Sam e, 500 mg in the morning. B12, Methyl Folate, Glycine, NAC. AVOID LIKE THE PLAGUE HISTAMINE TRIGGERS. High histamine foods, allergens. Simple things like make sure your air filters are clean. Mold, mold can be hidden behind paint, under your kitchen sink. I went into anaphylaxis 3 years ago. I had gut issues from taking Ibuprofen from from chronic pain which led to gastritis which led to anything I ate turning into a cytokine storm. I had ataxia, vomiting, nose bleeds, a falling sensation which kept me awake. Heat intolerance, overwhelming fatigue, heart racing, fainting. My biggest help has been Quercitin and Vit C and treating my MTHFR homozygous snips. Amazingly these illnesses won’t kill you but the suffering is enormous. My daughter has POTS too. I’ve been studying the genetic component. I must say the hardest part is the disbelief you experience from friends and family and the medical community. Pots, Mast cell and histamine intolerance are real. Im happy to help anyone who reaches out.

This is unbelievable. You have just described everything that I am living with right now! I have just managed to pick myself off the floor after the worse episode that I have had over the last 5 years!

sending you lots of love💕💕💕i’ve been on my own health journey/issues last several years (not like yours) but i know the feelings you spoke of and even cried w/you. I do believe the Lord uses everything to His glory and u r amazing by putting this video out!❤️❤️❤️

I feel this to the core. It is so hard to explain to others, which I don’t even bother to try anymore. It’s been 4 yrs on this journey.

You have such a calming personality! Thanks for sharing your journey and giving us hope even when you're still struggling. I'm so happy you found a diagnosis and hope things getting better with your neighbor.

thank you for doing this…it’s been very helpful to me ❤️

Thank you so much for sharing your story & being vulnerable & authentic. God placed your video in my inbox this morning because he knew I needed to be reminded that I can stay Earth bound for one more day. My heart goes out to you sincerely & I hope you continue to heal. 🥹💕🙏🌷 Thank you for helping others. You are a beautiful soul. God bless you. You’re not alone either. 🌺

I am so sorry to hear your dreadful journey. It sounds just like me. I have been battling for years being so ill. I have just found a functional doctor at last. But for years I have been told all kinds of things. I pray to God all the time for help. It's so frightening. Many times I have thought I was going to die. And all I get told is your test results and blood work is clear. I wish you all the luck in the world. God Bless you. And get well. Xxx

Thank you so much! I have suffered for years upon years. You may have saved my life! I am so glad that you made this video!

It has been a tough journey. So proud of your tenacity and sharing your story that will perhaps help some other struggling folks. I think you’re going to make it and I am very proud of you

Please don't apologise for crying,you have helped me so much just by sharing your story so authentically💞 Stress is a major factor especially when prolonged. Thank you so so much..I've been feeling so alone and hopeless with this🙏🙏🙏

Thanks for sharing this with us. My wife has been dealing with this since she got Covid in 2019. No help from Doctors. She was in and out of the hospital every 3 mos. with what we thought was respiratory failure. We now know it was POTS since Covid. We have been on carnivore for the past 9 mos and she is doing soooo much better. The big thing was she couldn't sleep. Also she was having really tough time just walking across the room. We found Benadryl helped a lot with sleep and exercise on a recumbent stationary bicycle with oxygen therapy has helped tremendously with her being able to get up and walk. She is now able to go with me to the store without being totally out of breath and a high heart rate. Eating the Proper Human Diet has been the game changer for sure. She is off most of her Meds now and looking forward to weaning off the last 2 of 10 she was on.

Hard not to cry hearing your story. I share a lot of your story. Losing my mind for 6 months - stuck in fight / flight, adrenaline surges . Irritable. Muscle twitching all over my body. Like torture. I’m still on this ride but have found some relief with antihistamines and t hc late night to help me sleep. I haven’t found anyone that has really helped me yet. I believe MCAS is it. Started post covid / related. Still searching for answers. It’s good to know I’m not alone. Wish I could speak with you at some point. Thank you for this. -Ryan

Thank you, dear One. You are indeed doing God's work. Thank you for your courage. Thank you.

I just had to pause the video for a moment, I'll go back after I say...this sounds exactly like me...your story could be mine, i have no answers yet, except for Long Covid. Thank you for posting I look forward to viewing the rest of your video. (You look great by the way.)

That's great you finally found some medical professionals to identify the issue and resources to help you find ways to manage your health. ❤

Thanks for sharing this withus Sheri.I myself am sick and have been diagnosed with everything from Valley fever ,Lyme and coinfections,CIRS,Covid and now Autoimmune disease.I 'v been sick for over ten years and have spent over 150,000.00 on trying to figure out what is wrong.There are alot of people with the same symptoms as us but can't seem to find answers.One ER doc told me to get out of ER with my syptoms and don't come back.I know its frustrating.Please dont lose hope .Im praying for you.Dr. Maggie Yu says she help patients like us.I think im going to give her a call.Keep smiling and never give up.

I'm so very sorry, my sister has this Dear Lord please heal these people that has this . I'm like you been sick for so long just in pain . But I got so bad a couple of times and you do just don't know where to turn . I pray you get better .

Thank you so much for this video, sister in Christ. Ive been suffering 13 years

Oh yeah I forgot to mention a you tuber called Bartonella Babe!! She has great videos on MCAS and great doctors who specialize in MCAS… She is awesome!!

I just watched your video and my heart goes out to you. you don't know me but I did join the FB group a while age, but so far I have only watched your kayaking posts and videos of your fun trips, but never got it together to join in. But your trips really inspire me and I really wanted to join in on one one day because your group looks like a lot fun and I love Kayaking!. Thank you for sharing your story. It really hit home and touched my heart. I had a health situation a few years ago that Dr's could not offer much help and ended up having to do my own research and learned a lot about the Histamine issues as well. I too changed my diet and it got better. My story is no where near what you've been through but I felt your frustration, worry, shame , etc that you explained and totally understand. I just wanted to share that with you so you know your emotions and worries are Valid and you're not alone on that. It is an awful thing and feeling to go through. It was a real shock and wake up call for me to learn that as wonderful as Dr's are, they are not God, and don't know everything and most don't know much about nutrients and natural ways to treat issues. And that there isn't always a Pill that will cure or should be the answer. Some Dr's are better at their delivery, but it really hits hard when you run into ones that suck at it! I too had to become my own advocate. That is a hard and scary thing to do so I applaud you and your faith and strength to go forth on this journey. I wish you all the best and will pray for continued success. I hope you are able to kayak again this summer and hope you will open them to the group again and I hope to join in one if I can. But I just wanted to share that I think your story can and will touch others and helps more than you know. Take Care 🙂.

I had all these symptoms and diagnosed with fibromyalgia, chronic fatigue syndrome, chronic migraines, gastroparesis and IBS and costochondritis and functional dyspepsia and 10 other conditions. Been like this for over 12 years and was diagnosed will all these conditions 4 years ago and a KZfaqr said I had mcas! I went to the dr and they laughed! But tested me and I tested positive for Mcas and systemic mastocytosis possibly . Under treatment and it’s helping so far. It’s not perfect but only 3 weeks in. I believe this condition is the source of all of my conditions and it’s key to getting mcas under control! I’m so glad you got an answer!

I just want to tell you I completely understand and I wish I had known this back when you went through it. I too have struggled with increased symptoms of something since the vaccines. I am not anti vaccination, but I definitely feel many of us have increased health issues from it. I would have been as afraid as you were!!!!! Especially being alone. I’m so glad to read you’re improving and God is with you no matter what. 💗

Yes, the feeling of dying that you have just before and after is terrifying especially being alone and not knowing what’s happening

I thought I had it bad, hearing your story and a few others it really makes me grateful I didn’t have it as bad as you guys ❤ Healing is possible ❤

A lot of people are suffering from this after a Covid infection. I’m sorry you are going through this.

Wow. I am so sorry you've been going through all of this! I too struggle with why the Lord doesn't heal when He says that is His will for us. Some get amazing healings, others don't. Why‽ But, like you said, we live in a fallen world, and we just have to trust that He is good all the time and keep pursuing Him. I'm so glad you've finally found some answers and are on the way to healing. Thank you for being vulnerable. I have no doubt the Lord is going to use you to help others through this journey. I'm adding you to my daily prayer list for healing.

I have this since covid. It’s brutal. It feels like my whole body is getting sunburnt when I’m trying sleep. I get severe tremors to the point I can barely stand. It also usually is accompanied but a feeling of panic and dread and extreme chills even if it’s 90 degrees out. This is the worst feeling I have ever experienced and I’m only 28 years old. I hope this goes away and I can get my Life back because I can’t even work Right now because of this.

I’m feeling the same as you! Went from being a very active 58 yr old woman to hardly doing anything! Same symptoms and getting worse. My new dr. Mo help. Im going to a Endocrinologist for an Ultrasound on my thyroid. Had 1 a yr ago with needle biopsy with nodules on my left lobe. I am trying to heal myself with nutrition and benzos! So very tired of feeling like im slowly dying! I have no support. God bless you for sharing your experience because we are not alone, I now think it’s through out all of the foods we eat and is becoming common after covid. No more jabs, prayers to you I wish you the best😢

Same for me! Accomplished, outdoors type, athletic build.. tried going to drs because I started having issues with my workouts & eventually felt so bad I quit walking, running weight lifting, and eventually my job. In the past 3 yrs of trying to fight for a diagnosis I have been getting progressively worse. Obviously I started to gain weight, which drs said was my age and probably hormones. Docs brushed it off as anxiety & psychosomatic. Yet, I have all the symptoms of POTS & Dysautonomia, including the HR & BP issues. I wanna say, if you need anyone to reach out to, I am here. I believe in the Lord, & I’ll say a prayer for you!! 🙏🏼

Thank you so much for sharing Pretty much the same issues I had with Adrenal Fatigue 10 years ago Doctors were not helpful. Dentist, Chiropractors and massage therapist know more about the human body than physicians I learned. Change of diet and HRT helped me most.

Tx u tx u tx u ive been researching for my teenager boy. I ordered liposomal gluthation sublingual drops and this reinforced me with yoyr gluthation product. You are an angel!😢

Girl xxx I feel you x God bless you

I'm crying with you. I've gained 30 lbs and hiking is my favorite.

Thank you for sharing this. So many people have similar stories. I am working oh diagnosis too ❤️

I've cried my eyes out watching you, I'm in the place you're you were. I've had everyone praying for me too, same EXACT story. I can't even take any of the meds others have recommended on here. I live on benadryl. Please pray for me, I carry an epi pen I everywhere I go. I too wa a thru Hiker, now I feel winded just w a lking to the bathroom. I wish we could talk I feel so alone. God bless you dear sister. I dont know who or what kind of doctor to see. I feel so broken, scared, alone, inwas diagnosed with MACS but i cant take Cromylin or Zolair. I was told ill go into antiflaxis and that will be it. Hospital after hospital even had IVIG

You just got me out of bed. Thanks.

I feel you. Been in the same spot you were. It is awful. I used to teach group fitness and yoga. I am a very relaxed person. Docs said anxiety. UNTIL I found the right docs. Boston Mass. Right tests, then finally a diagnosis.

I'm so sorry. I'm currently in that same situation. Feeling terrified constantly. I have POTS and I am suffering terribly. 😞

I’ve been trying to get a diagnosis for a year I’m so afraid I have cancer or something it’s 4 am and you sound like my twin this is insane thank you my eyes are swelling up with you ❤

Thanks for the video. I have the same problems . MCAS is really difficult to deal with . Thought I was going crazy too.

I'm so sorry you've been through all this. I'm thrilled you are starting to recover. I do want to mention though, that there are 3 types of POTS, and one type has a genetic component. So while its true that some ppl can heal their pots; that's not true for everyone. It was only recently determined the underlying function of hyperandrenic POTS. the hyperandrenic version is the really rare version that runs in families. what happens is a mutation in the gene that controls how much of your norepinephrine your body recyles. normally, the body re-uptakes 80% of your norepinephrine. but ppl with hyperandrenic POTS have too much norepinephrine in their bloodstream, and not enough doing its job as a neurotransmitter. You cannot exercise or nutrition your way out of hyperandrenic POTS, because its literally part of your dna. My diastolic dropped 45+ points and I passed out twice and threw up twice during the tilt table test. My diastolic continued dropping for several minutes even after they got me horizontal again. My lowest ever diastolic was 29, but I've had many readings in the 30s or 40s. three separate monitoring tests with hospital equipment pulled readins in the same ballpark. And to be clear, when this started, I was active; hiking horseback riding, cross country etc. Not overweight. I say this just in case anyone is watching / reading and thinking "i'm doing all this stuff and still not getting any better." So if the pots symptoms seems to fit your experience, but exercise / nutrition does not seem to be fixing your issues, think about your family history: its possible you might have the extremely rare version of POTS that requires medications to prevent severe injuries. Long-term chronic low blood pressure will cause heart damage. It's every bit as unhealthy as long-term chronic high blood pressure. Diastolic heart failure is no joke. Don't believe the doctors that tell you they can't do anything. Beta blockers to reduce your tachy, and alpha agonists to raise your blood pressure, can be a life saver. i'm not saying go on a beta blocker if you hit 120 pulse once in a while. But if your pulse is 130 after being supine for half an hour, if your bp crashes to crash cart levels when you brush your teeth, if you are experiencing really extreme, dangerous orthostatic numbers, there are absolutely medications drs can prescribe to prevent heart damage and or blood clots.

My healthy 21 year old son just got diagnosed with pots 😢he doesn’t want to take prescription drugs 😢I am lost idk what to do 😢I am a true believer when it comes to chiropractor because they been helping me for 20 years to live the life that I live ❤ I am so sorry you are going through this

I will keep you in my prayers every night.

Thank you for sharing your story. Like you, I have dysautonomia/POTS with syncope. Luckily I was diagnosed early on, because I was in a long Covid clinic. The cardiologist ran all the heart tests, which showed my heart was healthy. The neurologist on the long covid team saw my cardiac tests and ordered autonomic testing. My POTS isn’t considered “true” because I have as much bradycardia as tachycardia. The MCAS does go hand in hand. Syncope terrifies me. It has to be what dying feels like. It’s hard to explain this to people l, especially ones who had Covid and recovered completely.

Hello dear! So glad you got your way to improvement...hopefully a way to complete health! I'm desperate to start my way to healing as you giving me hope! Thank you!!!, and please, please, please tell me what was that "natural antihystamine" you've been taking before each meal at the very beginning of your healing!!! Hope to hear from you, and million thanks again!

I can relate to what you are going through. I've had similar symptoms for 30+ years due to a different disease.

Hi, thank you for sharing you story. Pleased that you finally managed to figured out suplements that works well for you. I struggle with similar symptoms, apart from food iam reacting to environmental trigers ( fumes, smock, detergents, parfums...) it is a absolutely nightmare. Have been bad few times, doctors seems have no idea how to help. Would pray for you .

Ugh 😩 I feel your pain. I have the exact same condition. I have dysautonomia/POTS likely from the MCAS. I also have cholinergic urticaria which means I get hives/dermatographia from heat, sweat, exercise, showering, sun and vibration. Random foods trigger me too. Xolair injections have been extremely helpful with this condition. I’m also in very high dose antihistamines and singulair, but they don’t help with the hives or bad reactions. My biggest symptom is the tachycardia and sometimes bradycardia with the adrenaline surges. Do you find when you get the last and biggest adrenaline surge that your body goes back to normal? It’s like my body is doing what the epi pen would do. Thankfully I don’t get full blown anaphylaxis with airway obstruction. Although Mast cells can cause heart attacks so don’t always brush off an attack. The tachycardia is most likely a good thing. The body may be increasing the heart rate to bring up our blood pressure. The mast cells release chemicals that make the blood vessels relax and leaky which will drop blood pressure and cause us to pass out. You may notice presyncope right before the tachycardia gets worse. If you pay attention to the very first symptom and lay down and try to engage your parasympathetic nervous system you may be able to avoid a full blown episode. You and I have a cholinergic trigger which is definitely autoimmune. Stress is also a huge trigger. We have to find a balance between pushing ourselves and relaxing. It’s the cholinergic response. Look up cholinergic allergy

God bless you my daughter went through years of doctors telling her it was just anxiety and she does get bad anxiety but we knew there was more going on until one doctor finally figured it out and like you she found foods with red and yellow coloring and msg and caffeine make her much worse I pray you continue to feel better

🙏May God bless you daily‼

If there is any possibility that there's mold in your apartment or building or working place, thats's going to keep you ill. Mold is the apsolutely worst thing for anyone having histamine reactins or especially MCAS. Good luck in recovery❤

I have experienced a lot of what you have! I am being tested for pots next month via tilt table. I have hashimotos as well. In November I experienced incredible stomach pain after eating and couldn’t really eat for a solid 2 months. Started to get better then started feeling really weird with my body. Thought I was having dementia and having surges of pressure and heart palpitations. In May I would wake up feeling confused then my body felt like it was attacking itself. My heart rate slowly kept rising and wouldn’t go down. I convinced myself it was a panic attack and my heart slowly started going down. It happened again in June but this time it didn’t go down and went to the ER. The doctors couldn’t figure out what it was and one nurse gave me attitude which I didn’t appreciate. Luckily my dr has a family member with pots so he led me to a cardiologist who also is very sympathetic and willing to do these tests. If you read this is there a way I can contact you so that I can have some support from someone else who understands me

I have been doing Epson salt baths It helps keep your Histamine low. I am so sorry and I can relate to your story. many blessings.

I am an RN, familiar with POTS, but had never heard of MCAS. Thank you for sharing your story. I have learned from you. Your frustration & fear brought tears to my eyes. May you continue to improve on your journey to better health. ❤

I have POTS. Nattokinase helps with angina and I take Atenolol for tachycardia as needed. Thiamine is good for POTS

I started getting sick during Covid while grocery shopping. I would all of a sudden not be able to breathe, got hot and puked. It happened every single time. It was Exertion too. It happens in the sun, boat rides, etc, I got stomach cramps and throwing up. I have a bucket I carry. I had to wash the dog, had to get the bucket. Every time I take a shower, I get nauseous and throw up, and get so weak I had to crawl to the bed. I just quit going anywhere or telling anyone cause they just don’t believe it.

Maybe it would help others if you make the last part into another video. Eventhough it is custom made for your own body, it could help others understand what the condition might require them to do in their own way. It helped me understand and appreciate your challenges.

Sounds like Paraganglioma. Paragangliomas can be triggered by a lot of those foods. Also, hyper pots can be caused by Cervical Spine Instability. Cervical Spine Instability, or Paragangliomas can cause autonomic hyperreflexia. Where catecholamines go up and down and blood pressure, pulse go up and down. I would rule out Cervical Instability as a cause of your Pots, as well as rule out Paragangliomas/Pheo's. Just to be on the safe side if you continue to feel bad.

God bless you ❤😊

Very recognisable

I can relate to you so much I have pots and suspect mcas most my flares are after food Bless u I hope u find hope

I’m crying as we speak

You precious angel 😇 I’m having similar issues yet I do have brain Lesions and I’m almost at hopelessness I too am a Christian yet seriously feel as if im under attack omg it’s like you said, I look crazy!! With fibromyalgia diagnosis in my early 20s to 55yrs old now m so depressed and do eat awful w/dairy and gluteN. YAYYY GOD!!!! He Is our doctor our friend creator father - I truly blv , in my case He is trying the wake me up to be alone w/Him only after all the toxic relationships and a recent death of my 17!yo partner pray ers for a new home , a lot of mold in this house and fam is going to clean and sell He took care of me and now he’s gone I feel like a child and do need help yet know The Lordwill intervene and place ppl good ppl in my path. Blessings to you sister 🌈💦🥀🌹💔🙏🏼🙏🏼❤️🤲🏻✝️

Can u pls add a list of your products in the description or here?

There is also SIBO, small intestinal bacterial overgrowth… Bartonalla Babe also has a,great video on SIBO!!

Three out of four of my young adult kids have this. The oldest, now 27, has been dealing with it since about 15-16. She has an extreme form of exhaustion and was diagnosed with rheumatoid arthritis. I just don't think so, as she has these POTS symptoms, has to stay hydrated, gets Reynaud's symptoms... The next oldest, age 23, also gets Reynauds symptoms and was tested for allergies and apparently has a number of food sensitivities. She avoids these. She is still able to work. My third daughter, age 20, has always been exhausted on warm days and cannot tolerate heat/exercise exertion. She is getting tested by all the specialists. I heard that the vasovagal nerve may cause some of the tachycardia and digestive issues as well ss dizziness. I also researched and found a doctor in Florida who treats symptoms associated with C1, C2 cervical instability... as this affects your vasovagal nerve. If you had a neck injury or as in the case of my kids a possible connective tissue disorder, this could possibly contribute to it? I'm not diagnosing and dont have the answers yet. We are in the midst of this increasingly disabling problem. Only my second daughter can currently work. She cut back to 4 days a week as 5 days was just too much. God bless you as you contiue to figure out your health situations.

I have had these symptoms since I was 8 yrs old. Mine went into anaphylaxis. I'm 60 yrs. Old now. Finally 3 yrs ago I was diagnosed with mcas. I get monthly shots of xolair and haven't had an attack since then. Anyone living with this condition please ask your allergist about it. It saved my life.

When I had these “attacks”, extreme cold, nausea and massive anxiety. The only thing I found that helped was sitting in a hot shower or Xanax (unfortunately) if it’s worse. I took the Xanax for the extremely anxiety and it stopped the attack. They said gallstones, took the gall bladder out, still had the attacks! MCAS seems like it! Now I know I’m not alone! THANK YOU!

Have you tried compression garments for POTs?

I’m having similar experiences, sorry you are too!

look into estrogen dominance and histamine intolerance, this all happened to me during perimenopause,and after years of dealing with it ,i found out thats what my problam was

This sounds very similar to what my part is like when it's freezing. I'm okay, I have my limits when I exert myself but I'm okay but when it is hot, like anything above 70 I'm dead and I can't exert myself. I still have symptoms even in the cold. They're doing chores around our house and stuff, but man that he is a killer for me.

I get it with dealing w the heat- and no one understands the full effect - and looking to winter , except that then it’s cranked up inside stores and offices -‘inferno

💗

It’s 2:50am here in Ohio and even though my husband is sleeping next to me I’m scared 😢 He had a heart attack in 2018 and yesterday evening he had horrible angina ( which feels like a heart attack and he has to take nitroglycerin and if it doesn’t got away he has to call 911, thankfully his angina subsided )so I don’t want to wake him. I’m feeling like I’m going crazy because I’m having horrible chest pain, heart palpitations, feelings of fear, dizziness when standing, I’m fatigued, my memory has always been horrible but it’s getting really bad( I can’t even remember all my symptoms)I get overheated when I’m over exerting, my vision just went out and than fuzzy, my head and face just feels weird, feeling constantly panic and idk I just know something is up!? I already have chronic pain from a cervical spinal fusion that went bad, fibromyalgia, arthritis throughout my whole body, and just so much more. I’ve been through so much stress and I wake up with feeling like I’m having a heart attack. I feel so horrible and I’ve had so many issues and now it’s getting worse. I wish I could afford a functional medicine doctor. Just thank you for sharing it really helps. Sending prayers your way 🙏❤ I hope I’m making sense!? My memory is so bad that sometimes I don’t make sense. Again thanks for sharing ❤

Me too I believe in healing and my daughter is doing these symptoms too. I hear POTS runs in the family. No earth is not our home. I am praying for you also in Jesus name may you be healed soon. Remember the women with the issue of blood spent all her money on Doctors but they could not help her. But Jesus healed her. He said your faith has made you whole. I know I have gone through a lot like you. And people act like your crazy. Hang in there. I was suicidal once too. I pray God heals you. Completely Don’t give up on Jesus! My daughter is 53 in July and she has been dealing with this for years. She told her cardiologist after her last hospitalization and she was told well we will watch you and see you in 6 months. Hang in there. Thank You for sharing your story . Everything I have is autoimmune but I can’t find a naturalist doctor. I have called but I’m ignored. I gave you a thumbs up and will follow you

I’ve been to emergency over a dozen times, with this issue & get sent home and told I’m having a panic attack. I also have the food issues etc. My Doctor is treating me for MCAS, even though the allergy specialist did not agree. This is all Post Covid & Vaccine damage. I believe I have hyper pots as I get very high blood pressure with my attacks. I have felt very alone in all of this. I have lost my lifestyle and can got go on walks anymore.

What natural antihistamine did you take before you ate? You mentioned that you took it but not what it's called?

Your story is sounding a lot like mine!

Do you take low dose naltrexone? That stuff helps with the food sensitivities.