My Story - My Diagnosis - My recovery
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- Опубликовано: 6 сен 2024
- UPDATE: Since the making of this video - I am continuing to get better with each passing week. Just the other day I was able to go up 3 stories of stairs in a building. This is very encouraging because that is back to what my limit was before things imploded in January! I will work on healing and seeing if I can get even better!
*Apologies for poor quality videos.*
This video is to help explain what has been happening to me with my health.
Since COVID, so many people have this very same thing happening to them and it is going undiagnosed since not all doctors are familiar with these auto-immune disfunctions. I had this long before COVID, but covid has exacerbated people with underlying issues.
Finally getting to the bottom of things with diagnosis of POTS and MCAS.
I will explain my symptoms (which can range widely for people) and what I have been doing to heal and be the best I can be.
Below I am linking the RUclips videos and doctors that really helped me to understand what I have and how to be at my optimal health!
If I can help just ONE person find hope - then everything I am going through and went through is worth it. YOU ARE NOT ALONE! My BIGGEST advice is research how to get better naturally and all the things you CAN do instead of all the negative of what you can't. FOCUS on the POSITIVE. It can always be worse!
These are the most impactful videos that helped me:
• What are the symptoms ...
• Holistic Treatment for...
• 5 Natural Ways to Incr...
• Video
• Glutathione - The Immu...
• Anxiety and breathing ...
• How to get better from...
• Managing histamine int...
I hope some of this will help you if you are struggling. My very best wishes to you all.
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.
@@ginnyfromdablock7551 I feel for you girl. I'm so sorry you have had to go through hard times as well. I finally came to the realization that I'm here to help people and that is my purpose. I want people to know that they are not alone! I want them to know that there's another side to this. We just have to research what it takes to heal our bodies. God made our bodies to heal. We need to give them the proper things to do so. Food journaling is huge and searching out the things that you can take to heal the cells in your body so they start functioning properly. Don't eat processed foods or drinks. Do intermittent fasting. All these things? Give your body a break and allow them to heal. You've got this! Do not give up! There will be people that you will be able to help as well. Fight the good fight! 🙏♥️🫂
Have you tried accupressure to help place you out of fight or flight? Eat vit C rich foods. Vit C helps modulate histamine issues ( not sure why any of her doctors didn't tell her this) . Yoga therapy is good too . Benadryl has lots of side effects.
@@MM-qp4pd The fight or flight happens in the late night hours after your body does a histamine dump when you try to go to sleep. Yes, at the end of the video I show the Vit C and glutathione I used to help heal my cells. The medical doctors don't study nutrition so they just don't know. And this MCAS and POTS is very new to many doctors still.
@@adventureswithneels5014no. Fight fight happens during the time you are experiencing the perceived threat. If a bear is standing in front of you your body is secreting chemicals that put you on fight or flight mode so that you can get out of that situation at that time. It doesn't wait til the middle of the night . Who told you otherwise??? The problem is when your body is unable to process these chemicals and emotions properly healthily and people get stuck in fight or flight even when the perceived danger has already left. That s when energy work such as accupressure can help. It can help unblock stuck energies.Have you looked into accupressure?
Check into Blair upper cervical. They check for c1 misalignment. 👍
This is me for 45 years dismissed, crazy, in your head. O m g I live in my air con bedroom!!!!’ It’s so isolating. You cry for all of us! I’m recovering from anaphylactic shock x 6 today.
Aircon would've killed me years ago! Do you ever think to try something different after 45 years?
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!!!
I'm so sorry I'm just seeing your message now from months ago. I got overwhelmed with so many messages coming. I couldn't keep up anymore. I had to actually take the video down to stop the messages from coming in.
Yes, it truly is a bummer when they aren't listening to you. I've been a major active outdoors person my whole life. You know when something's wrong. That's why I kept going and searching down different avenues. I don't let doctors deter me. I just find my own answers.
They don’t write me off with that assessment because I’m lean…they just tell me it’s anxiety
There are hardly any good doctors these days, they are nothing but legal pill pushers, masking our problems, and and killing us slowly with them. 😢
@@vandam2711 yep, that's what they say! Low histamine diet, try that with intermittent fasting. Stay away from processed foods. That's definitely a huge trigger along with sugar and caffeine. 🫂
Same for my 24 year old daughter...no one understands this in NC and it has been so hard on her...brings me to tears everyday. Praying the Lord Jesus will bless you
I called an ambulance a week ago trying to move the entire time, I couldn't move, I could only look around. When I arrived at the hospital, they said "Stroke victims CAN'T talk, you can talk, you just don't want to." I was weak and had tremors and needed help to walk. The whole staff was trying so hard not to laugh and looking at each other. I cried while saying you guys are assholes. You're laughing at me. They said no we're not we're trying to see what's wrong with you."
I cried so hard before leaving that room and had to have assistance from my bf. Walking away and being embarrassed, belittled, and treated like I was a drug addict. They laughed when I turned around the corner to leave, and I still see them til this day. All looking at me, and laughing. I was really scared... I do have EDS, and crohn's disease. This experience was the most traumatic for me. I still cry at random times...
I’m so sorry you were treated so badly. My God bless and heal you. In Jesus name. Amen
I went through a very similar
time of trial . 🙌prayers for your continued healing. In Jesus name ✝️🕊amen
@@lindarose8668 thank you for your prayers.
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!
Thank you so much for all of your information. Yes the PTSD is very real. I have learned great breathing techniques. I have also learned since this video was first posted the beginning signs of a bad attack and exactly what to take and how much to counteract the mast cell reactions in about 10-15 min. I will be doing a charcoal detox very soon to get any leftovers from my mold exposure YEARS ago.
Thank you again for caring.
You all have given me some hope, I can't believe I'm seeing my story
@@MiaMeezy it is INSANE how many people this has effected since the COVID virus. It really messed with our nervous systems!!! There is hope and you will get better I promise. Work on eating clean, fasting, don't eat after 6 pm helped me at night. Best wishes for you. ❤️
@@adventureswithneels5014yes, mine began after the vax
@@kate4biglittlevoices mine got bad after COVID itself. I don't do vaccines and refused their COVID shots.
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
Oh my goodness the poor thing. The middle of the night thing is dreadful, thank you for being there for her because it is the worst feeling in the world! I highly highly recommend that you change her diet number one and first of all. Make sure it's a clean diet. No processed foods or drinks. All natural low histamine diet. This will be a game changer! Make sure she doesn't eat after 6:00 p.m. this will help with the panic feeling in the middle of the night. It is very important to stay away from sugar which makes everything worse! Make sure she gets lots of minerals. If you have a good quality pink salt, you can do pinches of that in water. I am currently trying the new Buoy liquid minerals. So far it has helped me GREATLY. My heart goes out to your daughter. I have tears in my eyes for her knowing exactly how she feels.
Is she vaccinated?
I feel the same way.
@@carmella88 No.
@@michellelynnm1933 I felt like this after covid too not vaccinated either. I'm a bit better but I found out it's my thyroid a mess now. Check her thyroid if u haven't already
Thank You FOR SHARING. . I HAVE BEEN HAVING SEVERE MIGRAINES AND VOMITING FOR 63 YEARS. RECENTLY PASSED OUT. SEVERE BLURRY EYESIGHT. . VOMITING. .
AMBULANCE CALLED. . THE DICHARGE DR. SAID . . DELUSIONAL😢😢😢 OTHER DRS. AT HOSPITAL WERE LISTENING AND PAYING ATTENTION. . . THANK GOD!!
SAW DR. OUT PATIENT. HE TESTED BP SITTING. . THEN STANDING. . LOOKED AT ME. . LETS CHECK AGAIN. . BP WAS SO HIGH. . POTS. . GOING FOR MORE TESTS. . I HAVE ALWAYS BEEN ALLERGIC AND LIGHT SENSITIVE. . HEAT SENSITIVE.. . VOMITING SO MUCH I KEEP CONTAINERS WITH LIDS AND TISSUES AND CLEAN WET CLOTH AT NIGHT. .
VERY FOOD ALLERGIC. . NO SOY. . NITRATES. . SULFATES. . NO OVER EXERTION AND YES AN AUTOIMMUNE ISSUE. 63 AND FINALLY I FEEL THAT THINGS ARE GOING TO GET BETTER. It HAS BEEN AN EXTREMELY DIFFICULT L9NG TERM SITUATION!!!
I BEG OUR DOCTORS TO PLEASE LISTEN TO YOUR PATIENTS.
I WORKEK IN THE HOSPITAL MANY YEARS. . WOULD GET VERY SICK FROM THE LIGHTS OR IF I WORKED A DBL SHIFT I WOULD BE TOSSING COOKIES FOR 2 DAYS. FINALY HAD TO LEAVE THAT POSITION. NOW DISABLED. WORKING WITH AWESOME VESTIBULAR THERAPIST. HE INSISTS EVERYTHING I DO SLOW AND GENTLE. . NEED IRON . .B12. .I AM GETTING THERE. I HAD MI AND PASSED OUT AFTER HOT SHOWER. OPENED MY 3RD EYE WITH IMPACKED. . MICRO BRAIN BLEEDS. . THIS IS NOTHING TO PLAY WITH. . . I AM VERY THAKFUL AFTER ALL THIS TIME TO BE A BETTER GRANNY AND MOM. BLESSINGS AND HEALINGS TO YOU ALL😅❤😅👨👩👧👦❤
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! 🙏🏻
I'm so sorry to hear this. You type of POTS is the worst. I watched a news anchors story who had pots that bad. She couldn't get out of bed without throwing up. I'm praying for answers for you my dear. Keep researching online for ideas for making things better. I know the fasting not eating after 6pm has helped me a lot. Clean diet. Low histamine foods. I'm also starting the Buoy liquid minerals. This has helped a lot!!! I highly recommend this for you. We need extra minerals and water. ❤️💪 You've got this! I believe in you.
Same! I was in the military and very physically active. Flash forward a few years later and I can't even walk up a slight incline without almost having a panic attack or passing out. I feel your pain, girl.
@@KatWarhound I SWEAR if you food journal, find out your triggers, do low histamine diet, keep keep out inflammatory foods and drinks from your body. You're going to notice a huge difference! One of my biggest triggers that sent me to the hospital was an avocado! Just because it's healthy, doesn't mean we can have it. Low histamine is the way to go. ❤️
@@adventureswithneels5014 So true! You'd never think an avocado would kill you but MCAS is crazy like that.
I was keeping a journal as you suggested. It did narrow things down a lot. I recently had a really bad spell about a week ago (Like the kind that makes you think that you're def going to die) which lead me to fast for 3 days and then I introduced chicken, salt, and butter once a day for about 4 days.
My symptoms are def improving even though I'm in quite a bit of pain, I think it's detox. I am a little scared to reintroduce any other food but we'll see how it goes. ;) Thank you for your kind comment and nice video. You're making a huge difference, even as you're going through all of this yourself. Very inspiring.
Sounds like Cervical Spine Instability and Autonomic Hyperreflexia. Also should rule out Paraganglioma.
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! ❤❤
Hello Breezy. Thank you for your message. I tell you I could start a whole RUclips channel JUST about this journey! Your heartfelt message brought tears to my eyes. I KNEW there had to be others out there that needed to know they aren't alone. I'm praying for answers and healing for you as well. We won't understand everything this side of heaven. We just have to keep running the race until we're done. ❤️
God bless you!!!!
@@adventureswithneels5014 do you do consultations on this would love to connect
I hadn’t had an episode in over a year I believe, and was sure I was “over “ at least the fainting spells, but got sick to my stomach after I had woke up in the night, and went to the restroom, while I’m sitting there I felt really bad sick, and knew I was bad bad, but next thing, I woke up on the floor, and came to slowly, and had passed out cold felt bad over the last two days - bruised up but guess I’m getting past that one
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.
Functional neurologists can help with all this. They deal with brain and the gut.
What is an environmental doctor? Doesnt sound like a real specialty
Environmental Medicine is the practice of Medicine which looks at how the body is impacted by the environment. Please read my other comments. Famous Environmental docs whose work you can read include Dr. Jerry Tennant & Dr. Stuart Nunnally in TX-they are both actively practicing, lecturing and publishing. Find a Weston-Price chapter near you & learn about his ground breaking work. Dr. Weirs has apprenticed under Dr. Alan Lieberman for over a decade & is taking over his practice at COEM in SC. Environmental Medicine can be an MD, ND, PA or LAc.
Dr. Hal Huggins published prolifically during his lifetime. Find a credentialed practitioner of LIVE Blood Analysis and you will be astonished by what is currently in your body !
Dr. Ben Feingold's groundbreaking work in the '70s led to the Feingold Institute.
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.🙏
@@susanpeters1478 I'm sorry to hear of your sufferings with Lyme disease. I'm praying for you now as well. May you find peace and comfort in healing. If not on Earth then in heaven. 🫂♥️
A lot of people are suffering from this after a Covid infection. I’m sorry you are going through this.
Thank you. I'm hoping to heal my cells completely someday. 👍😊
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🙏🙏🙏
Thank you for your kind words. I'm so glad my video is helping people to not feel alone. There is a Facebook page for MCAS that really helped me in the beginning. It can get " heavy" with all the suffering but there is a lot of advice offered when you need it. It helped me out in the beginning so much. Keep striving for answers. RUclips has a TONS of natural doctors that talk about healing the mast cells. There is hope!!!!! Never give up! 🫂
@@adventureswithneels5014 🙏🙏Thankyou, I actually found the fb page yesyerday after watching your video.
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.
Thanks for all that information. I do have a concoction that I do if I have a bad reaction. For the most part I stay in front of the game and never let it get that bad. I don't eat those things anymore that cause the severe reactions. Once you know you just avoid them! I guess I am not so sensitive that one bite of a peanut would throw me into shock. It's usually at the end of the day when my body is just full of histamines.
I'm so sorry you had to go through those scary episodes during the night as well. It's the worst feeling when you just don't know what's happening but you feel like you're going to die. Over and over and over and over again. It literally about made me lose my mind. I couldn't take it anymore!
God bless you on your journey and I pray continued healing for you!
Where are these doctors you speak of?
@@Whatintheworld_72 google their names. Maitland, Afrin and Dempsey are in NY. The latter two are in the same practice. Maitland travels to metrodora institute in Utah once a month. Trevino is in FL but can be seen virtually from other states (depends on state). You might be able to find other “local gems” in the immunology world. Brigham and Women’s hospital in Boston also has a mast cell center.
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.
I know right!?!? I THOUGHT about making a channel for it and my journey to healing.....but I didn't want my LIFE to be about that. I wanted my focus to be more on the things I CAN do still like kayaking and short walks with no hills. Lol (gotta take what wins you can.)
God bless you in your journey!!! I'll make an update video one of these days....not a big fan of a camera on me for long periods.
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.
Yes, not many people understand. Who knew FOOD could cause so much pain. Support groups online helped me do a while. Lots of RUclips research with natural doctors on healing my body. It's hard, sometimes I get lazy and don't want to do all that stuff. Energy is always low. But we keep fighting and moving forward! Never give up girl, you are not alone.
I contracted mono and covid in 2020 as a freshman in highschool, and went with POTS, MCAS, ME/CFS, and SVT undiagnosed for three years. My primary care doctor said that it was due to anemia. One day he was out of the office, and I came in for acute symptoms. He wasn't there, so another doctor saw me, and referred me to a specialist. Because of the time I missed being sick and sometimes bedridden, I failed chemistry and made low grades throughout highschool and missed out on my graduation, prom, etc. I had to give up sports when I used to play 2-3 at a time. I'm still trying to figure things out, but I have a team of doctors finally who are taking me seriously. It just sucks that I had to get "sick enough" (full body rashes, narcoleptic-like symptoms, asthma attacks+developing asthma, passing out, ER trips, etc.) until I got proper care. I hope the healthcare field can begin to SEE us before we are broken mentally from all this crap.
@@carolinecorneliaa I'm so sorry you had to go through all that. Medical doctors Don't go to school to heal the body though, all they know are " patches ." Try to look for natural doctors to help you actually heal your body . You have a story to tell and to help others now become more educated. Heal your cells best you can. Focus on that. When our mast cells are not functioning well everything goes crazy. Eat the least amounts of processed foods as you can. Things can get better and manageable. Hugs from MN. 🫂
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.
Thank you for your comment. I'm actually up, I was awoken with the panic mode part of things. I was doing so well and ventured out with new foods to try for a camping trip. now I know not to eat them.
Thanks for your advice.
And YES it's the worst when people don't understand or believe you. They say things like "it's just hormones," "Are you sure it isn't just panic attacks?" " It's probably just aging." Etc etc.
I do find it helpful the MCAS support groups, they understand. It can be a downer as well seeing so much suffering.....but I try to encourage others when I'm doing well myself. 😊. It's definitely depressing, you have to be careful to feed yourself positive things so everything doesn't overtake your mind!
Wishing you the best!!!❤️
Hi I need your help Please
I feel like I am having POTS
@@nikhilsharma6676 we at doctors so we can't help you. You can research POTS and figure out ways to help yourself. But there is no cure for it. If you have severe POTS You should seek help for it some people cannot even get out of bed without fainting or puking. I have a different level of it where I cannot exercise or do lifting and I'm extremely affected by the heat. It's very important that you drink lots of water! This has helped me huge. Sometimes I forget and then I get into trouble then I have to stop myself sit down and drink lots of water and recuperate. RUclips is full of information from actual doctors that can give you advice on what to do. I learned a lot from those doctors on how to help manage things. That is my best advice to you I didn't have a lot of luck from going to medical doctors.
@@adventureswithneels5014 Postural tachycardia I suspect
I had tilt table test today
my heart rate was increasing on tilt table from supine to standing by 30 to 40 beats
but techician considered it as normal and said ur report is negative as my bp was staying constant
How is your daughter healing from pots ?
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 ❤
Thank you for taking the time to reach out and comment. I was thinking as I was driving into work today how I can help more people who might be alone and scared. This RUclips page is really my kayaking adventures page. Perhaps I should start a new RUclips page putting videos out. I know it helped me to see other people and listen to their stories. It didn't help me in the middle of the night, only desperately searching for people who were awake in the world that I could talk to just to help calm me down until things subsided.
Thank you for doing research on this. More and more people are coming out with all of these symptoms I think it's a really huge epidemic happening. Something has happened to the cells in our body where they are not functioning properly. We need to get them healed and functioning again. Out of all my research that's what I've discovered. I'm so glad you had someone there with you so you didn't feel alone. That warms my heart. Keep going and never give up! And thank you for you. ❤️
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😢
Yes, the feeling of dying that you have just before and after is terrifying especially being alone and not knowing what’s happening
Exactly!
I was alone with my 4 kids when I got this feeling. For me it would come in a wave I could almost feel it blanketing my body. It was horrible. I'm a lot better now, but I wouldn't say 100 percent better.
@@carmella88 keep getting better - keep bp in check !
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.
Thank you for your kind words. It was difficult to share, but I hope it helps people. Thank you for your prayers. I WILL rise above this!
Thank you for sharing your story. I identify with all your symptoms. Can you do an update on your health? I see you got your life back and that is amazing. ❤
@@dulcesadicciones I did get my life back. It's not perfect but it is not the depths of hell that I felt I was in. Yes I know I need to do an update. It's very hard for me to turn a camera on myself and talk. But I know I need to do it for the sake of others. I will try soon! I don't have all the answers but I have the answers that worked for me. I'm lifting you up in prayer right now and sending you big hugs. I'm so sorry you're having to go through all of 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.
I am so glad she has found things that are working for her! Diet is a biggy. I try to only eat low histamine foods which changed everything along with fasting after 6:00 pm. Then we don't get the late night dump of histamines! Quercetine is a HUGE help when she starts to feel the hard to breathe pounding heart thing. I HIGHLY recommend. I get the 500 mg tablets and chew 2-3 and get it down with water. It hits the system fast to calm down the inflammation. Meat can get very high in histamines too. Eating one food only long term is not good. Good to cleanse the body but not meant forever. Add healthy low histamine fruits and veggies back in to get the other vitamins required to keep healthy is my recommendation.
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 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.
Start a food journal right away! Start a low histamine diet and fasting or intermittent fasting, find antihistamines that work for you. (lots of trial and error)
Someone suggested 2 Zertec in the morning..... This has been a game changer!
I do lots of quercetin too before I eat and after....several times a day, (maybe 2,000-3,000 mg/day) This has helped a lot!
I still have to stay away from certain foods. I don't eat after 7pm anymore, that has been a game changer too. 🙏 Praying for you.
Did you get the c shot, could be one of the many reactions from it.
@@Gesundheit888 I didn’t get the shot but I have long covid. Long covid and the c shot injury is pretty much identical from what I’ve been seeing. My dr claims it’s the spike protein staying in the body is what causes these types of issues.
Look into B12 shots
@@potsbottlejars5551 I have. It seems that it’s not MCAS but rather a histamine intolerance I have because my microbiome got destroyed by covid. So basically I have a bunch of food intolerances so I’m adding the good bacteria back in. Hopefully I’m better in half a year
I thank you for this video and I hope you know your story has truly shifted the lives of many others. Why we may not understand why these things happen to us. Why we wonder, “why us?” In this treacherous life, you have made others feel understood for once in their lives. Thank you for sharing your light for those who’ve felt most understood their whole life.
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!! 🙏🏼
I will say videos like this let me know I’m not alone in this, I’m so glad you’re raising awareness!!
It IS nice to have a diagnosis to try and figure out how to get better or no what to do to try and help for sure! But if we just keep researching and doing what we can to HEAL our bodies that is all that matters. Keep researching the internet on ways to heal yourself with nutrition and food, minerals. I will be making an update video soon. Just have to work up the nerves to do it again.
I'm praying for you now. Yes hormones play a big part for women too.
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 RUclipsr 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!
Oh my gosh I'm so sorry you suffered for so long. It is amazing when you know what to eat how it is a game changer! It takes TIME for things to improve, have patience with yourself. Intermittent fasting really helps clear the body. Best wishes to you! ❤️
I'm intrigued. What testing did your drs do to find mcas?
@@ktcee803 my allergist-immunologist ran blood work and urin samples and they can do skin biopsies if needed and I had my colon biopsy tested for mast cells because I had just had a colonoscopy done. I had a large amount in the intestines and my bloodwork was high in prostaglandin pg d2 which is a marker for mast cell activation syndrome they also check igg and tryptase levels and I brought in photos of my skin flushing and redness and they do an over exam and go over your symptoms. Treating this condition has really helped me so much. With less fevers, flushing, shortness of breath and heart rate fluctuations. My body was going nuts no matter what I did or didn’t do. My body was in an extreme state of inflammation and Ive
been on natural anti inflammatory supplements and diet for 12 years! I needed treatment to calm down the reactions and as they calm my body can hopefully heal.
@@ktcee803 really interesting
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 am going back and replying to messages I missed as I got overwhelmed with comments. POTS and MCAS are closely related. If you research on the internet there is SO much information now about POTS. Enough water and electrolytes are a HUGE part of pots and a low histamine diet is very important too! Best to you and your son. Keep researching!
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.
DON'T DO DR.MAGGIE!!! I almost gave her all that money. You don't need to pay someone thousands of more dollars. There are plenty of natural doctors online that you can get that advice for free and take the supplements yourself.
What she says makes sense but don't throw thousands of more away.
Work on healing your body naturally with fasting and nutrition. Our bodies need to have breaks to heal.
My friend was suffering for 7 years and she just did the fasting and elimination diet. She's been doing wonderful for 2 months! It's hard and it's a lot of work but it's worth it!
I myself kept doing intermittent fasting and fasting for one day at a time here and there is many days as I could. It's amazing how the body starts to heal itself.
Praying for you. 🙏
I'm so shocked ! The Dr should be taken out of E.R. himself for his rotten attitude. Hope you get well and find the trigger/cause. So sorry you are being treated so badly when feeling poorly.
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.
So glad you found the right doctors!
Your BEST, defense against POTS is exactly exercise, start low and slow on the ground, recumbent. Look up the Levine protocol. You may think you were in the best shape but you in fact weren’t. Your cardiovascular muscle is too small and cannot work properly. I promise you can come back STRONG. You have to build up your muscles, that’s KEY. Muscles!!! I don’t know about MCAS but POTS isn’t autoimmune, its deconditioning, particularly of the heart muscle. PT is the only effective treatment for putting POTS into remission.
We’re you doing any strength training? to build muscle?
@@lisamccullough5150 yes, I still am but when I flare I can't exercise at all. I'm better now but, had to start really slow after my initial diagnosis.
@@lisamccullough5150 that is how I started back up again.
Testosterone will help build t cells. Most women have very low to no testosterone, especially during menopause. But unfortunately, for us to get the help we need for hormones, we 99.9% of the time have to pay out of pocket for a good doctor who specializes in hormones.
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.
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 have ME crying. First thing you must do is start a food journal and start eating a super low histamine diet, do fasting at night for as long as you can into the next day. I'm on messenger look me up. Neely Witham. ❤️. I'd be more than happy to talk to you.
I have so much advice to give you, you probably have POTS as well. The two go hand in hand. Look me up I'll give you short cuts from all I've learned since I made this video.
@adventureswithneels5014 I'm looking you up, I'm Mia Meezy. I could use thr help, your video gave me hope, had me in tears ND for the first time I knew I wasn't alone or crazy, pathetic and lazy. My life was hiking (it was my everything and even though I knew for over 10 yrs I wasn't getting better, I held out hope, prayed, begged Christ, and finally about 1½ ago things got REALLY bad, more and more hospital visits, my husband nearly stepped out. On top of it all I ended up with West Nile, woke up numb from the waste down. Had IVIG treatment, my feet have Neuropathy now, every step I take is a painful reminder. I saw an immunologist and he basically said I'd die from anaphylaxis. The last yr I thought God please just take me home, everyday.
God Bless you dear sister. Had I not come across this video I don't know how I could've gone on.
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 .
I pray for you now as well Sherri, I'm so sorry to hear you are in pain. Stay strong and I hope you keep searching for answers for yourself. Never give up!!!
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!
Thank you for sharing. It is AMAZING to me how many people suffer from this. I think TIME, allowing our bodies to heal, giving it rest from toxic food (like you doing the carnivore diet) helps so much. Yes I too have lingering things that I learn to manage. That darn POTS in the summer time makes it impossible to do exertion things I love doing like hiking. But that is ok. We deal with it and like I always say.......it can always be worse!!!! Count out blessings. It is really hard when you are at rock bottom though! Hugs back from Minnesota!!!
🫂
@@adventureswithneels5014 💕
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
Thank you. ❤️ It was so hard for me to be so vulnerable. I just knew there had to be others struggling. In my darkest times I would pray for others going through the same thing feeling alone and scared. 🙏💔
I have POTS. Nattokinase helps with angina and I take Atenolol for tachycardia as needed. Thiamine is good for POTS
Thanks for the info! I wish you well on your journey.
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 ❤
I’ve been avoiding my stairs too and so things have been behind for months I don’t eat much anymore
When I’m driving all of a sudden this wave hits me sometimes and I want to take a nap a few months ago I got my morning coffee and parked in the first spot at target and it was going to be a great day and BOOM it was 1 pm and my
Phone was ringing and my husband was asking when I’m coming home I just flipped out crying because I passed out at 10 am in my car 😢 I was so scared thank god the car was parked and I had my air on
When I’m cleaning if I bend over to pick toys off the floor I feel like my heart hurts so much pressure
Oh my goodness, yes it sounds the same. Totally change your diet, drink lots of water, make sure you're getting your MINERALS too.
My body is slowly healing. I get the EXTREME fatigue of I chose to eat something high histamine, I feel like I could sleep for a year my eyes are so heavy. I have to fight it!
Functional neurologists can help with all this. My daughter went through POTS/Dysautonomia and has now been helped without medications.
Check out North Carolina functional Neurology.
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❤
That is what really flared things up years ago was black mold. I was good for a while, then COVID triggered it up again. Now I have to control it. I am going to do a specific detox someone told me about this charcoal and or clay. Hoping this will help.
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.
Sorry for the delay and my response. I had to take the video down. I couldn't keep up with the comments. I have the video back up now and I'm just replying to comments that I missed from months ago.
I'm so sorry all of your children are going through. This. Diet is such a huge play in it. I tell everybody start a food journal and write down everything you eat and drink and then if you get symptoms when you get them, write them down. It's usually linked back to food. When I eat low histamine whole foods. I feel my best. It's not easy but let me tell you it's not easy when you eat high histamine foods and you have the attacks.
I'm praying wellness for your children now.
Antihistamines have helped me greatly! I have to take times two the dosage sometimes. And please take note for your girls that things get worse during the hormonal changes of their menstrual cycle. I have to be super careful a week before my period!
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. 🌺
Sorry I just saw your message. Thank you for your comment. I read this at just the right time, last night was a bad night since I ventured to eat a sandwich since I was feeling so good! Not a good result.
We press on! We keep running the race. God bless you. ❤️👍 Every day is a new day.
@@adventureswithneels5014, I’m so sorry you are having a tough moment, I hope it passes quickly. I know that all to well. Whenever I deviation from the diet I pay dearly as well. It’s so tough to be low histamine & low oxalate & gluten free & dairy free & basically no sugar or caffeine. I hear if we can get through a 3 month period with no flare then we are on our way to remission. I pray that one day in the very far future that we can enjoy some special slips every now & then. Sending you golden light & high frequency vibes. 🌬️💫🪷💕
@@jamierathod Thank you - we've got this!!!!
Yes Jesus help her and us with these terrible symptoms. ❤️🙏🏽❤️
I'm so sorry. I'm currently in that same situation. Feeling terrified constantly. I have POTS and I am suffering terribly. 😞
Get on a low histamine diet ASAP if you're not already. Journal everything you eat and anything that feels off after you eat anything. Tiredness, headaches, itchiness, breathlessness panic anything and everything. You will find your triggering foods. A low histamine diet and mega vitamin c and glutathione helped heal my body. Then it was a slow progress after that with fasting not eating after 6:00. I used to fast in the beginning as long as I could from 6:00 p.m. into the latest. I could go the next morning. Just to give my body a break and to heal. I've started adding minerals into my diet that has been a touch and go experience. I think I finally found a product that I can use. Now, though. I highly recommend doing a good quality Himalayan pink sea salt in your water and drinking as much water during the day. As you can, you'll find a huge difference! I'm praying for you now and sending you gigantic hugs. You're going to make it through this. Do not give up! Keep researching how to heal your body. Drugs. Do not heal our body but we can do it in a natural way I promise.
@@adventureswithneels5014 I don't have MCAS though, is a low histamine diet absolutely necessary? I already use pink Himalayan sea salt and approx 120-135oz of water per day. I also take magnesium, B Complex, fish oil, vitamin C, Vitamin D and digestive enzymes. I take no "drugs" for POTS. I don't want to. I don't want to be dependent on them. I want to heal myself. Did you do anything else? Nervous system work? Exercise? Is your POTS gone now? Thank you for your prayers. So much. I need them. 🙏🏻❤️
Thank you so much for this video, sister in Christ. Ive been suffering 13 years
Oh my gosh, that is a long time. You are not alone. So much more research and help out there now. Be strong, big hugs. 🫂
All I can say is thank you for this video.
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.
Diet was HUGE! I am glad you are finding relief. I hope you are still doing better.
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!
@@Bob-sk6xq I'm so sorry to hear up all your suffering. It's the absolute worst when the attacks happen. Get yourself on a low histamine diet ASAP! Get a food journal going. Write down everything you eat and drink and when you start to feel anything in your body. It can be tightness in your neck, headaches, sick to your stomach and fatigue are some beginner signs. The ringing in the ears and the feeling cold are other signs as well. But I promise you if you get on a low histamine diet and if you do intermittent fasting, you'll start to heal your body. It's so important to not eat after 6:00. You will sleep much, much better! And for sure don't eat high histamine foods before bed! Sending hugs your way. You're not alone! 🫂
@@adventureswithneels5014 Crazy thing is, over time I learned about what I could and couldn’t eat and you’re spot on. Eating before bed is a no no, no alcohol, filtered water and fasting for sure.
❤️
Did you have a tilt table test? Yours is an amazing story. I hope your health steadily improves.
Thank you, dear One. You are indeed doing God's work. Thank you for your courage. Thank you.
Thank you for saying that. I need to make an update video. I get very emotional from the trauma and hearing other people's stories is heartbreaking. God help us all.
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 🌈💦🥀🌹💔🙏🏼🙏🏼❤️🤲🏻✝️
Be strong and rise from the ashes. We must never fall victim. Dig deep, draw strength from the Lord. I know it can be hard but way as much Anti-Inflammatory food as you can. The less inflammation we cause in our body the better we feel.
I have said a prayer for you, I wish only the best for you. May your life turn a beautiful corner very soon!
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.)
I have come a LONG WAY since this video.
Biggest helps:
Don't eat after 6:00, fast after that as long as you can to give your body resting time to heal
-Take antihistamines before you eat.
-Get on a LOW histamine diet ASAP
-Quercetine 1,000 - 1,500 mg if you start to get the hard to breathe or heart pounding......chew the tablets and drink a glass of water. It gets in your system fast and calms things down. (game changer for me!!! You can get it in the vitamin shops)
-Add good quality mineral salts to your water ( a big pinch) or I have just started the Bouy liquid minerals in my water. This helps so I can walk in the woods and not feel like I am going to die or just take a flight of stairs!
I am SOOOO much better, you will get there. NEVER GIVE UP!
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.
Thank you for listening to my story. I was in a dark place but thankfully I saw the hand of God reach down and give me hope once again.
Thank you for your kind words. ❤️
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.
Thank you for the advice with that. I used to take Epsom salt bath, now that summer came I have not been doing them.
I have purchased minerals, liquid minerals and I add them to my water which I was missing for so long drinking reverse osmosis water for years. I just keep doing everything I can to heal my body. I wish you the very best on your journey as well. Pump yourself with a lot of positive things and things that make you happy. You deserve it! 👍
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!
Please NEVER give up. Find the nutrition to heal your cells in your body, fast, change your diet. You can do this. There IS hope! I continue to get better and better every month now that I try new things to help me out. You're not crazy, you've got this!!!! Research your butt off. Be your own advocate. Find at least ONE support person who believes in you. ❤️
Thank you. I have long covid and experience many of the same symptoms. I had just learned about histamines and purchased Benadryl yesterday. God bless you. You have been through so much. Robin
@@robertbaker9377 Benadryl is going to make you really tired! Try one of the non-drowsy ones I take two Zyrtec the 24-hour in the morning. That has helped a lot! I also do high doses of quercetin which also takes away inflammation and helps right away. I do that at lunch time.
@@adventureswithneels5014 thanks, i appreciate the advice
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.
Oh my gosh that sounds terrible! I can't imagine throwing up all the time!
Is it MCAS you have as sounds similar to me but not that bad. I don't go anywhere so I don't vomit anywhere only at home. No nausea though it's like an acid reflux instead. I get dizziness, heat intolerance, and exhaustion and pain in upper body as that's the only part I have to exert myself with like the groceries to bring inside its almost killing me to do that. I get out of breath, chest pains, headaches, rosacea and more but no diagnosis. Had deficiency in iron and B12 and some globulin rise (it's a protein). I'm just here looking at people's stories and symptoms so I can diagnose myself. I feel poisoned so feel it must be what I eat and have bouts of constipation, weakness, insomnia and a belly like I'm in 2nd trimester, spider veins forming more recently and dizziness. Feel its something to do with vascular system or digestion or both. The back pain and headaches wipe me out though. Also today after two days of headache I have ear pain and my hair is sensitive to touch. I've had this a few times. Can't brush my hair, can't do anything for pain, weak and tired but can't sleep. Some days wish life would end for me. Then others I am OK. Go figure! Bless you all for your experiences to help one another and hope we all get better. A lot sick after Covid. The trauma of it for some could have got the nervous system stuck maybe? Happy healing ♡
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!😢
Oh my heart goes out to your son. Hard to deal with this as an adult can't imagine for your boy.
If he can't stand the taste mix it, just good to get it in the body.
Getting the inflammation out of the body is a huge part of healing the cells.
Quercetin in high doses will calm an episode down quickly. I'm not a doctor but 1,500 mg worked for me an adult.
The fasting after 6:30 and low histamine diet cutting out processed foods helped.
I had to take antihistamines before I ate anything or just to function during the day.
Now I only take antihistamines if I have a flare with food I shouldn't eat. It has taken me a year but I'm healing.
Don't stay on that glutathione forever. It is meant for short term healing. 👍. High vitamin C and turmeric help with calming the body as well.
I hope this helps. ❤️🫂 I'm praying for your son right now.
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. 💗
I didn't take any of the vaccines, COVID itself messed with people's cells in their bodies. Pure evil in my opinion.
Keep pressing forward and I wish you all the best with your symptoms.
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 ❤
Indeed it is! I have worked HARD and kept trying new natural things as possible. I'm SO much better now. Lots of intermittent fasting, liposomal glutathione and liposomal vitamin C, Quercetin and low histamine foods. Benadryl when I really needed it and detox drinks daily.
I'll try a clay or charcoal detox soon to try and get anything else out of my body that is lingering toxins. God is very good to me. ❤️. I hope and pray you get much better as well. ANY symptoms are bad.
@@adventureswithneels5014 incredible I’ve just started looking is to Dr Sarno let’s see how this goes ❤️ Keep Going 😊
@adventureswithneels5014 I really found Vit C in high dose clears up my acne. I'm now having lemon water before I eat anything to help with stomach acid. I'm interested in your protocols and thanks for sharing this and the products with us. I will try anything. I'm starting with B12 and Spirulina tablets for some iron and goodness, Immune support, B complex, Multivitamins for women 50plus and I have slippery elm powder to line my gut, as well before I eat and psyllium husk for fibre. I couldn't breath the other night, always night pain and night symptoms too so I tried not eating late and my insomnia improved and my anxiety about sleep and feeling unwell. Last night nearly called ambulance with chest pain and breathlessness. I notice I don't like being alone at night, I've almost thought I had a blood clot in my leg and needed ambulance another time. I'm using what is in my kitchen to help me though. I'm drinking tumeric lattes with black pepper or strong chai made at home when I feel inflamed or that I could have a clot. I am going to a therapist to talk about why I don't like being alone at night or why I don't like the night time at all. Had some experienced like home invasion type thing happen so might try hypnotherapy as gut and brain connection is a huge deal. There are links and cures we just need to be patient
I'm crying with you. I've gained 30 lbs and hiking is my favorite.
I'm so sorry. I know it is hard, but we WILL find new ways and new things to love. So far kayaking has been good. (everyone helps me when I need it.) It's not as good for losing weight but it is better than sitting doing nothing! We must keep searching for things to help each of us get better on our journey. Big hugs to you!!!!!
You just got me out of bed. Thanks.
You can do it! Dig deep! ❤️. If I can help at all let me know.
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! ❤
I'm so sorry I missed your message months ago. I got bombarded with so many messages. I couldn't keep up anymore. I'm just reading your message now. I'm so sorry you are going through similar things. I wouldn't wish it upon anyone. It's really good to know that we're not alone and struggling with these things.
I just started going back to church again. It's been a struggle for me. I have never walked away from God or my faith or my belief but I've just had a really hard time. But I know God loves me and he cares for me and we live in a fallen world and I have to remember that. The only time we will truly feel our absolute best is when we're in heaven.
Thankyou for sharing! Your healing journey and your research and what is heloping you and most of all your hope in the Lord!❤
You're welcome. I need to do an update video. 😩 Summer is so busy.
I had orthostatic intolerance, schizandra berry got rid of my OI, raised my ferritin from 30 to 103, not a typo, got rid of my physical fatigue and oxalates
I will look into this right away. Thank you for sharing. I'm trying to only do natural things.
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
Thank you mom. Couldn't have done it without you.
@@adventureswithneels5014 I would like to share what I am doing, however that list is huge... Have you found Elliott Overton's work on B1/Thiamine? Goes through "Therapeutic Doses", Benfotamine, TTFD, and more.... made the most change in short time... I have a B1 Playlist...
@@adventureswithneels5014 also, Thank you for sharing the "specific" products that you have found work...a lot of channels are "afraid of selling" or promoting anything..... but honestly it just saved time to hear what works for someone and get started ...
Just be careful with Elliot Overton's TTFD (B1). It seemed ok for the first 2 weeks, then all hell broke out. I use Benfotamine now. @@1truthseeking8
Very high doses of B12 mythalcobalamin corrected mine. It took many months before I was 100%. This was me 😭
Thank you, I will look into this after a charcoal detox I am going to do first. ❤️
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 happened to me long before getting to this age It's just slowly been getting worse. I'm sure perimenopause and hormonal stuff has exacerbated it as well. And yes the majority of it is all about the histamines for me.
My symptoms, mcas, got worse when I started bio identical hrt. It was the estrogen which I never should have taken.
Do you take anything?
@@ninap6893 I do not take anything for hormone replacement. I just try to eat healthy and I do detox shakes two to three times a week.
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
I am so sorry you are going through this as well. I keep researching and trying new things. I have found great strides with 2 Zyrtec in the morning and large doses of Quarcetin 1,000 mg help a lot! Almost no symptoms if I eat well. God bless you on your journey as well - big hugs!
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
I'm so sorry to hear this is happening to you as well. Yes everything got worse after the big "C" it seems to have brought this out in so many people.
I'm glad to hear you are finding relief!!!
For SURE start a journal and switch to low histamine foods.
Detox, intermittent fasting. We HAVE to heal our cells in our body.
You are GOING to get through this. Keep researching ways to heal your cells. I turned into a positive research NUT. I tried everything people suggested in the natural field. I have found relief in 2) 24 hour Zertec in the morning and early evening. Also high doses or quercetin help if I'm going to eat something with high histamines.
I still have rough patches. I get up and drink a detox shake which helps every time now. It's about getting the inflammation down which is causing the fight or flight mode in our bodies from the mast cells.
Huge hugs sent your way.
@@adventureswithneels5014wow it's crazy good how you manage. Why you need to detox is the next question. Why you're reacting to histamines? Research Nut I can believe as I'm one too. I think it started with looking for something to help energy and sleep. I've even wondered if the drastic changes like the fasting harmed me because I wasn't eating as much and getting tired at end of day so didn't want to cook so I changed things around I didn't ear late and then looked forward to breakfast but still deficiency so now I'm eating three meals a day again and so exhausted as whole food to meet the nutrients we need is a whole lot of food and a whole lot of work to make it interesting. I believe I need to go simple like you have. Buy some organic options only and make it just a set weekly menu and not live in the kitchen. Being tired and not wanting to cook let alone do the dishes makes you despise food. The more you plan and I love the mason jar idea, the easier it is to see food is available when you're not well and cant make it. Do you eat bread at all?
@@adventureswithneels5014Do pollens or windy days, cloudy days affect you? I tend to feel better when the sun is shining
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
Thank you for sharing. I've come to realize that not everybody gets healed here on Earth. We don't know why and I'm not going to question it. I'm not going to expect healing anymore. God will just use my story for good. I love that story of the woman with the issue of blood though it's one of my favorites. Yes we have to be our own advocates sometimes. And I do believe that my mom has some of these things as well. She cannot handle the heat. She never really has been able to. It seems like it gets worse as you get older the pots.
One thing I worry about if I get older and have to go into a nursing home as them feeding me high histamine foods and me just constantly living in a state of panic and there won't be anything to do about it. I know I shouldn't think about the future that far ahead because God says not to but it is one of my fears. God bless you and your family. I'm praying for you now. 🫂❤️
@@adventureswithneels5014I worry about the future and my kids putting me in a home and I lose control of my food choices and my health goes bad and I fear suffering alone in silence😢 or nobody helping me to get better. Nobody ordering my supplements and that sort of thing. I guess we'll be unhappy and we may not want to live long. It will be a short end life then I suppose. What else is there to do but die once you're in a nursing home. It's going to be the end of me so the shortest time I'm there the better maybe?
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.
LOL, calm is the last word used to describe me, but thank you. ❤️. I am continuing to do better and better. I'll make a new video soon. God bless you in your good and bad times. 🫂
@@adventureswithneels5014 OH MY GOSH! I'm so happy for you!! That's wonderful to hear you're doing better. I sincerely hope your fight is coming to an end. You've obviously earned it and then some. /// Haha! Well, I know you mentioned you felt nervous making the video but I think you the way you do your videos, it makes it feel like you're just relaxing and talking with a friend at their kitchen table or something. Very comfy. You're a badass. Wishing you the best and praying for you.
@@KatWarhound thank you for the kind words and the vote of confidence.
I have only started my pots journey this year. I have never felt so ill in my whole life. I have suffered with ME/ CFS/ FIBROMYALGIA, G6PD... 2015, but this Pots on top has floored me in months....
I am seeing the best Pots professor in 3 weeks after numerous tests. I pray now i get an insight into healing as i can no longer walk. Something is seriously attacking my body.
Yes, i believe gut health is everything now & just learning.
Your video has been so informative 🙏 i have had one Trauma after another since 2015, 2018, 2024. Even this week lost my fur baby of 15yrs & my carer diagnosed same week with stage 4 cancer 🙏😞 Stress is my killer, knowledge is Everything.
x2 Covid injections killed my immune completely.
Thank you for giving me " Hope " 🙏 Sending healing hugs to you & other New sufferers 🫂 ( i have just joined every pots group in the World ) i no longer feel so alone.
My heart goes out to you!!! Stress, lack of sleep, our immune system.....so much comes against us sometimes. Glad you are working on gut health. The inflammation in the body is so bad. I am doing round two of the liquid C and Glutathione. I am doing so much better but still struggle from time to time. Hormones play a HUGE roll in it too!!! I want to get my life back to the fullest and be able to hike again. GOALS. I am so glad you found support groups. That is huge as well to know we are not alone! hugs and prayers sent your way. I'm so glad you are getting the help you need. Stay strong. You've got this!
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!
Oh my gosh I'm sorry to hear this. You are not alone. Diet is huge living a low histamine diet lifestyle. When I was bad I had to take antihistamines before I ate anything. I don't eat past 6:30 so I have good nights now. Intermittent fasting is a huge healing part. I wish you all the best. Lifting you up in prayer right now. 🙏. Keep researching natural doctors online with great advice for healing these things. 👍❤️
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
I KNOW! It's like our body thermometer is broken!
@@adventureswithneels5014YES!
I get it. I live in a place that has a large garden..I feel guilt all the time. I can't sleep in my bedroom at all in summer it's 40 degrees Celsius and in winter so cold here the heater is cranked up. Little relief anywhere unless it's outside in winter and then pain gets to me and depression so my poor garden suffers for years. If I try to exert myself I have to rip all my clothes off just to prune the roses. Then vomiting randomly and overheating I need to stop. Best of luck. Hoping for a cure for everyone
@adventureswithneels5014 I thought it was menopause and my thermostat was broken. It's the only way to describe it. It's maybe to do with the thyroid hormones ?
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.
@@hurricane_valence It's much much better if you can switch over to a low histamine diet. If you have not already. It greatly affects my MCAS and the POTS part with the heat. Staying super duper hydrated with minerals in your water is extremely important! I was in a store just yesterday with my mom and the AC was taking a break. Couldn't keep up with the super hot heat. I was almost passing out. I literally had to go out into my car, drink a ton of mineral and electrolyte water and sit with the AC blowing on my face. Usually I recover pretty quickly in about 5 minutes after the water has gotten into my body. Craziest thing I tell you!!!! 🤪
Spirulina is high Histamine. I switched over to Moringa instead
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.
Thank you so much. I know I'm not the only one who struggles with faith and questions. And I don't think it's wrong that we struggle with these thoughts and I think it's important we be open and share with others. I can say without a doubt for sure. I know God is real. That's been proven time and time and time and time again! But why do some get healed? And some don't is the big question indeed! If I spend time being mad about it it makes me better. If I spend time on focusing on my journey and if I have to go through this then I am bound and determined to help people through whatever it is that I'm going through!
I will learn to dance in the rain! 😁
@@adventureswithneels5014 Amen! Let's dance in the rain. I will continue to worship Him when when I don't understand.
Read "Your Healing Door" by Greg Mohr. Also watch his teaching at Charis Bible College on 4/19/2023 on RUclips
@@chadmcleish I'll look into it. Thanks!
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
Oh my goodness. Thank you for all this information.!!!!
Be sure you do not have the HLA dr gene. Please look up mold derived mycotoxins. I finally found out I have mycotoxins made by mold. Glutathione is important in treating mycotoxins. This sounds weird. I would have thought so, but I had POTS and allergies to many things. Your coloring and your origin are possible English/Scotch Irish. You can get well if you get diagnosed properly. Mycotoxins can give you cancer if not treated. If you’ve ever had even mild odor in any house at any time do please go to RealTime Labs or any other urine testing company and see how high your mycotoxins are.
I had certain symptoms very mild for 20 years. I have worked in the natural health world for 20 + years and did many detoxes.
This was ramped up by black mold over 4 years ago. I have detoxed a couple times since. When I was at my worst and couldn't eat anything I did good quality glutathione and vitamin C. COVID ramped everything up in so many people. COVID did something bad to our cells. 😢. I have learned SO much more since this video I did. I really need to make an update.
🙏May God bless you daily‼
@@susanpeters1478 Thank you so much! God will use all of my sufferings for his good. What the enemy has meant for bad. The Lord promises he can use for good. I hold on to that.
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!❤️❤️❤️
Thank you for your encouragement. I truly do believe that God loves me. I know from my past God uses everything for good. Maybe he's chosen me because I'm stronger than I think I am? This has been one of the most debilitating things of my life which has made me lose so much of what I love. But then again he's also giving me something to replace it that brings peace to my soul, kayaking on Rivers. I guess if I can help anyone with some sort of hope that they can get better since I am getting somewhat better. Perhaps it is worth it. It just makes me so sad to think of others out there going through the panic of feeling like they're dying I'm not knowing what to do. Everyone thinks you're crazy and it's all in your head. 😢.
I'm so sorry for the issues that you've had to go through, I hope you're doing much better!
@@adventureswithneels5014 i am, thank you, and it’s stories like yours that i read that give me more hope…in my desperate times, i find it more healing for me to pray for others that may need it for i know that’s what He would want me to do, and it that there is comfort and healing. again, my deepest sympathies u ever had to go through that…maybe u said it, but i sure hope u r putting a book out! it will get it out to a whole lot of people who could use your message!❤️🙏🏻
I forgot to mention my daughter has POTS,Narcolepsy with Cataplexy, post concussion syndrome with migraines, fibromyalgia. She was so dismissed by the medical community if it wasn’t for my husband and I supporting and advocating for her she would probably be dead. I understand your pain and you are definitely not alone. I am curious what meds you are on? Beta blockers, anti-anxiety, salt tablets, saline solutions??
I have seen many patients get narcolepsy after receiving a flu or pneumonia vax.
I try to stay away from all meds, I don't need any further side effects adding onto my current problems. I do take Benadryl and 24 hour antihistamines, for immediate relief I take Quercetine 1,00-1,500 mg I chew the tablets to get into my system faster. I currently bought mineral Buoy liquid minerals before that I used good quality mineral sea salt for my water. Breathing techniques for anxiety attacks to food until the Quercetine kicks in.
That's great you finally found some medical professionals to identify the issue and resources to help you find ways to manage your health. ❤
Thank you. I finally knew what to target. I had peace of mind I wasn't dying!
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.
Noone understands except those who live it. I have PTSD in fear of going to sleep if my heart starts pounding from MCAS food effects. Now, I know much better how to ward off the worst symptoms and panic and all that. Thank God. I'm sorry you have to deal with this stuff. 🫂❤️ Hugs to you.
@@adventureswithneels5014 thank you. PTSD runs thick here, and every day is a new adventure living in a body with a dysfunctional nervous system.
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.
Oh my goodness I'm so sorry you have that version of POTS. That sounds terrible. Thank God mine is MUCH better with nutrition and proper diet. My POTS and MCAS seem to go hand in hand. I recently had a stress test done JUST to make sure my heart is good. Big thumbs up on that, I have peace of mind now. Mine is more with exertion up hills or stairs if I'm hot especially.
Good quality salt and minerals is helping and staying hydrated.
God bless you on your journey! 🫂❤️
Thank you for sharing! Praying you continue getting better.❤
Thank you much!
Vitamin B1 seems to be helping, along with my doc who does traditional and holistic medicine. My dysautonomia is very severe. Thx for the video, cuz I’m now really trying to work on my diet and supplements. I already was vegetarian.
@@shoshishararecordingsshosh1501 praying for healing and that you come to the other side of your illness. Keep fighting the good fight! We are all stronger than we think we are. We just need to dig in deep!!! You've got this! 🫂🙏
@@adventureswithneels5014Thank you so much! I hope for all of us!
Thanks for sharing and I hope your road to recovery is steady and easier everyday!
Thank you so much for your kind words. ❤️
Girl xxx I feel you x God bless you
God bless you too. Best wishes on your health journey. 🫂
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.
There's been so much response to this video which I really wasn't expecting. I really don't want this RUclips page turn into a health page. I have contemplated starting a new page and to make some follow-up videos. Just to share my journey. I'm still in the thought process. This RUclips channel truly is for adventures in Minnesota. Mostly kayaking. Lol. I will think about what you said some more and make a decision. Thank you for commenting. 😊
Thank you for sharing this. So many people have similar stories. I am working oh diagnosis too ❤️
Once we know what we have you can target the healing better and know what to do. I had no idea I needed to drink salt mineral water that almost eliminates my POTS issues with hiking/kayaking. BEST wishes to you in your journey. 🫂
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.
I'm so glad you found relief for yourself! ❤️
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 🙂.
Thank you. Your words brought tears to my eyes. I'm sorry you had to go through similar situations. It's incredible how the food that we put in our bodies affects us greater than we will ever know! And why does it affect some more than others? We don't get to have the answer to that. We just all have our own journey. I really truly do hope I can inspire someone who's down and out but there is hope and there is help that they just need to dig down deep and be their own advocate. Sometimes. There is support groups and there is help if we just keep searching. Thank you for saying you'll pray for me. I know all the prayers will help give me strength. May God use my story for great things. People have it much worse than I do with different situations. But deep dark depression is deep dark depression. No matter what causes it. I pray my story of hope will be a small light to someone's dark place. 🕯️❤️
thank you for doing this…it’s been very helpful to me ❤️
You're welcome! I've find much healing in everything I did and just kept doing it! Our bodies do start to behave better with work and effort. LEARNING what works and doesn't work is important too.
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 am SO VERY sorry I JUST saw your message. I was overwhelmed for a while with so many messages I couldn't keep up.
You can if you have Facebook messenger you can message me there. Neely Witham
I'm so sorry you're going through this stuff. 🫂
Also there are Facebook support groups. That helped me a lot in the beginning. Look up MCAS or POTS support group. Best wishes to you. ❤
I'm going through this 😢
My heart races, my parents say I'm lazy, because I don't work
I have uterine cancer and this long haul Covid problem
I go into panic mode, the Vagus Nerve massage helps a bit
I'm so sorry you are going through this. Try to stay away from sugar and processed food and high histamine food. This should help you greatly. Praying for you.
@@adventureswithneels5014
Thanks sis, I will, I'm doing Fasting
@@casta9172 Yes! The intermittent fasting helped me A TON!!! Find a community online that has MCAS. They can help support you, they understand.
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!
AllerPro by TonicSea, I used to take three of them before my meal. Now I go straight to quercetin which I believe was the active ingredient in the our pro that helped me. In the beginning I needed to take about 1,500 mg. Now I only need to take about 500 to 1,000 mg if I feel symptoms coming on. And really the low histamine diet is huge! Food journaling and finding your triggers are going to be the game changers for you. 👍. Listen to your body. Sometimes I can even hold food and my body will just tell me. Don't eat that. I'll feel it inside of me. My body literally telling me don't eat that. If you question anything, put it down. Don't eat it. Our bodies are literally amazing. I know I need to do an update video. I just have such low self-esteem. I don't like turning the camera around on myself. 😩. but I know I need to do an update for giving more hope.
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 ❤
I'm so sorry you're going through all this stuff! Like I tell everyone start a food journal! Write down every bit of everything you put in your mouth and start a LOW histamine diet right away.
I'm not a doctor but what's been helping me is 2 Zertec before dinner of low histamine foods.
Maybe this will help you too?
I've done much work since the making of this video and I'm doing much better. I believe you can too. Listen to your body when you eat. I was AMAZED at what caused issues with the high histamines.
Sending hugs and prayers your way.
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 are going through this. We must keep sharing so others know they are not alone. Take care.
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
Thank you for your comment. So sorry for your daughter. It's sad when we are made to feel like we're crazy. Praying healing for your daughter. I continue to try and find things and nutrition to help heal the cells in my body and strengthen my immune system. Never give up! ❤️
@@adventureswithneels5014 also my daughter gets non epileptic seizures we had no idea what it was it’s like brain zaps and lack of clarity she says it feels like her soul left her body it took a long time to figure out what that was so if you feel that way get tested for seizures they did an overnight study and luckily she had some cherry 7up and the seizures showed up because the red dye made it worse
Non epileptic seizures caused by POTS
@@Elmo33325 oh my gosh! How terrible. 😢