I No Longer Meet The POTS Diagnostic Criteria
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- Опубликовано: 1 окт 2024
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I'm so grateful to be recovering from POTS / dysautonomia. Healing is possible, my friends! Do everything you can to let yourself believe that. I'm rooting for you always!
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I’d like to clarify that there are many things that have contributed to my recovery, and I feel all of them fall under the category of nervous system regulation. But for POTS symptoms specifically, brain retraining has by far been the most helpful thing.
Other healing tools that have contributed to my overall recovery include: animal-based diet, postural/neck curve correction, prolotherapy treatments, myofunctional therapy, optimizing circadian rhythm, connection with nature, cold therapy, etc. Not necessarily in that order. I truly believe the most important part of healing comes from within.
Hope that all makes sense. ❤️
Thank you so much for reiterating all the things you've done to heal!!
I'd really like to know how brain retraining can stop a person's blood vessels from inappropriately expanding when they go in a hot shower or outside on a hot day and force blood to circulate back to their hearts, lungs and heads so they can get air and not pass out or the convulsions that come after that? How would brain retraining stop involuntary convulsive movements?
How did you achieve neck curve correction? My neck has straightened so I’m trying to work on that too.
May I ask how you have or are trying to fix your neck curve? I have had dizziness for 4 years now. I am getting help and have had all the testing to make sure nothing is “wrong” just deal with the mysterious dizziness and my PT says I have a lot of forward head posture and fixing that neck curve would help me. Thank you for sharing what has worked for you.
I have had sleep dysregulation for my entire life and I recently found out I have a calcified pineal gland which could be potentially the reason I have non-restorative sleep. I feel this is at the root of a lot of my issues as my glymphatic system isn't able to get rid of brain waste. Do you know anything about what causes pineal gland calcification and how to fix it?
I'm so happy for you! I'm a POTS, EDSer and I'm following such a similar path to you. I've just started my nervous system retraining. Thanks so much for making this encouraging content
how are you feeling?
@@iasminahrituleac7888 oh my gosh!!! I feel like a new person 😭 I am sleeping better, my POTS symptoms have drastically decreased. I have more energy. I was living about 5 hour days before now I'm constantly doing at least 12 hours out of bed. I've been able to decrease my antihistamines as well. I am so freaking excited about it!!
Amazing!!!!!!! You're one of my top healing inspirations, as I do carnivore, circadian, and nervous system work to heal from Lyme, CIRS, CFS, etc.
Aww thank you so much ❤️ Rooting for you!!
So glad you are healing. You are such a hope for EDS community . Thank you so much for your videos, it helps EDS , CCI community a lot
Me tooo!!! I don’t have POTS anymore. Honestly what did it for me was the first adjustment by Dr Brian Hutchinson in Dr Ross Hausers office. I was waiting on the appointment laying down. I was their 97th percentile (very very very bad) pseudotumor cerebri aka intracranial hypertension, after a year and a half of bedridden propranolol life o was off the beta blockers in a WEEK after visiting Hausers office and implementing the advice. First was laying down every hour for 5 minutes and not turning my head to the right side for 3 months.. that was hard but understanding my physique it was great to recognize how I can recover. I’m going to live and raise my kids. I know this now. Regulating the nervous system starts with proper posture, proper alignment. I don’t believe in nervous system not functioning without a structural cause, that’s just unreasonable. There’s always vagus nerve constriction when this happens. Anyway, congratulations to us recovering !!!!!! ❤❤❤❤❤❤
that's really fascinating and inspiring stuff. What was that about, in terms of not turning your head to the right for three months? Also, what was your experience on propranolol like?
For POTS, people need to screen first all the others possible causes like Hyperthyroidism...low Potassium and Magnesium..adrenal gland problems...pituitary diseases..multiple sclerosis,diabetes and so on.
If you get all this test and no abnormality found,so yes you have let s say primary pots.
If not...let s try to fix it first and see how it works.
That's Awesome Girl Praise Jesus 🙏🙏🙏 do You still do neck weights? Take care 😊 what training did You mention for Nervous System THX Patrick
Rachel it has been such a long road for you and it is wonderful all that work you put in to get better has paid off. You look great, your skin is glowing, you look happy. I started watching from the beginning. What a change! You are so young I cannot imagine how frightened you were that you may stay that way. Be very proud of yourself for persevering through it all to get to where you are. May life only get better for you. I hope you update us every so often. Your story has helped many people.
It's good to see your progress. Did you ever experience Post Exertional Malaise (PEM) or flu-like symptoms in addition to chronic fatigue?
You are leaving out that you had a fusion and also did diet changes, prolotherapy injections and spine/posture realignments with weights. I've been following you for years and you started to get more functional after the weights and prolotherapy. I think you only mentioning brain retraining is doing a huge disservice to people that have pots and dysautonomia as I also have. Did you ever get a dmx? Before and after would be great. A dmx was the only thing that showed I have major ligament damage keeping my head over top of my head. I convulse with certain movements and it stops when I shift my jaw to the left. Where the dmx shows the most damage.
Thanks for your comment and I’m sorry that you feel that way. I’ve talked about all those things you mentioned in many of my videos. I am very clear that I don’t feel my surgeries contributed to my recovery, if anything they have made it more complicated. And for POTS symptoms specifically, brain retraining has been the most helpful thing by far. Carnivore & prolotherapy didn’t help my POTS symptoms nearly as much-though they did help with many of my other conditions/symptoms. And my diet and prolotherapy also fall under the umbrella of nervous system regulation. I’m sorry you feel I misrepresented the situation, but what I said is 100% true. Truly wishing you all the best.
@HealingWithRachael I also think it's important to mention that it isn't fully understood what brings on pots. Some say hormonal changes, viral exposures, vaccines, physical trauma, chemotherapy treatment and even ptsd. Depending upon what caused one person's pots may determine how they treat it. Also pots symptoms can vary substationally between cases involving wild blood pressure shifts within seconds and not moving, vertigo, vision loss, hearing loss, tachycardia, gastroparesis, respiratory issues, blood pooling, migraines, convulsions, temp disregulation and low iron storage. I'm against fusions and surgeries as well and you were clear that didn't help, but you started biking and being upright for longer periods of time in your videos after prolotherapy and your curve corrections, so it's just odd you don't mention that here. I remember you saying before carnivore diet was huge for you too. This video makes it sound like brain retraining was the main thing that helped you when your progress was years in the making with so many other variables. Can you say you saw progress without brain training?
I'm sure she knows all about POTS and does not need the lecture from you. She has been honest throughout her journey and if brain re training isn't something you think is going to be helpful for you then that's one thing but I feel you do not need to be commenting negativity as you are
Typically I say there are many things that have contributed to my recovery. They’re all related to regulating the nervous system. I may forget to add that in every once in a while, without intention. Yes, I had made progress before starting brain retraining. I’ve never claimed otherwise. Everything I said is 100% honest, brain retraining was by far the most helpful thing. My POTS was still severe after both carnivore & prolo and one of the conditions that I’d seen the least improvement from. I pinned a comment sharing some clarification for anyone that wants to read.
Regardless of the trigger for POTS and dysautonomia, I believe the root of the issue is still nervous system dysfunction (that’s the definition of dysautonomia). Of course, brain retraining is only one method of regulation and I’ve talked about this in many of my videos.
All the best.
Also please refer to the video “would i have healed without prolotherapy” to understand more of why I don’t always go into detail about prolotherapy with every video/post I make. This isn’t at all to disregard how much helped to accelerate my healing.
With the improvement in POTS did you also see an improvement in blood pooling? In other words when I stand up the blood falls to my feet and they turn red/purple. I’ve been able to help the tachycardia part of POTS but not this blood pooling yet. Did yours reverse (if you had it)?
I also struggle with this.
This is a big difficulty for me, too!
Everyones pots is different though some people might have a heart rate of 190 if it above 30 bpm on ttt its pots my heart rate is naturaly low 61 to 73 is my average and When I quickly get app from standing, it'll go up 41BPM. And beyond that. My highist recorded that I know of is 175 BPM. If you kept walking around with that heart rate instead of just standing, it would have gotten higher or you would have passed out or something. Don't be telling people Their pots can just go away Yes, I know your cardiologist will. Have you basically retrain your body I have a diagnosis myself. But some people's pots don't ever go away. And some people aren't to different degrees
You look radiant ❤ keep going! I’m being persistent too. We will both get there.
DNRs helped a little with my POTs but it wasn't until I megadosed with a certain kind of Thiamine did my POTs and many limbic system symptoms go away.
So glad to hear you've found things that help!
Which thiamine?
@@mariannesmiley300 thiamax and benfomax
Which thiamine
@@e.williams13 benfomax and thiamax. They’re both a fat soluble b1 form. I had to take both.
Have you been tracking your heart rate during your sleep?
I'm curious how your sleeping heart rate might have changed. Thanks for sharing!
I just got out of the hospital after finally getting diagnosed with CCI due to a rare genetic condition. After 15 years of being called crazy and medical gaslighting, I know now I'm gonna have to have the procedures you have including having my rib used in a bone graft. You've been one of the only resources for me on this surgery and how it can go as well as a great source of pure hope. I listened to every video while i was in the hospital and it helped me through the darkest time I've ever had. I feel like God guided me to you personally so i want to thank you for sharing because if not for you i don't think I'd be brave enough to do this surgery even though I need it to survive my journey with CCI and klinefelter's. But thank you because of you i have hope for life!
Thank you so much for your thoughtful message ❤️ Surgery actually was not what brought me healing, but I am truly hoping all the best for you. 🙏🏻🙏🏻
So, you only had pors, or did you have comorbidities like mcas or eds?
I had mcas and eds as well
Insane! Yay! Go Rachael! Always cheering for you ❤️
Well your resting pulse was really not good. Too high.
If I’d rested for longer I’m sure it would have gone down. Just filming probably made it jump more than usual.
I rejoice with you Rachel. I praise God for your healing journey. 🙌🏼
It wasn’t god it was her hard work
John 3:27
I'm so glad you overcome it ! Do you know what "type" of POTS you had ? Did you have blood pooling in your legs/feet ?
Thank you so much for sharing! Praise God 🎉
Does cervical instability is very painful? And does in every hospital has a doctor for prolotherapy in neck for cervical instability hoping for your answer ma'am and how to diagnose cervical instability what diagnosis to determine if I have cervical instability
Maam how did you determine that you have cervical instability is it through mri or xray didyou do flexion or extension or just normal posture
Have you ever considered psilocybin microdosing for dealing with some of these health issues that originate from the brain? I am thinking of doing that for me/cfs if I can do it legally of course.
Can cervical instability can be diagnose on x-ray even in Normal posture or I need to request doctor for doing flexion and extension hoping for your answer
Hi Rachel nice to have that you are recovering well
I’m Rayan 20 years old I had this craniocervical surgery this July 24 with plates screws and contoured rod in neck I just want to ask a question can you drive car after this surgery 😊
Anyone eating carnivore with low stomach acid, i cannot digest normal foods so not sure if I can digest carnivoree meats,
Thanks for sharing your journey and congratulations on your fantastic recovery! I am suffering from pulsatile tinnitus and ear pressure for 4 plus years now after driving whiplash.Did your pulsatile and ringing tinnitus symptoms eventually resolve? Thank you!
B1 potassium and salt also "cured" my pots :) so happy for you!
Which brand and how much? I just started doing this. My pulse goes to bout 150 160 so I sit back down
@@juanitahyde1265try and hit 5g of salt a day, half your body weight in oz of water, 400 mg B1 (I use benfotamine by vibrant naturals) and 400 mg magnesium glycinate
Greetings from Germany
Rachel this experiment and the outcome was great to watch.
Congratulations on that.
How pleasent to hear your words of encouragement on how healing is possible.
I wish you only the best
Hope my english was understandable
With great respect
Alexandra from Bavaria Germany
Hey Rachael, I’m so glad to hear about your progress. I am also doing brain retraining. I’m only 2 weeks in but have seen improvements. I wanted to ask you if you have opened up your diet outside of just meat and organs and how far into your journey you did that? Thank you.
Did you undergo a cervical fusion surgery if yes is it still there the screw and metal inside your neck or its already removed by doctor
This is so encouraging Rachael. I also have EDS and POTS etc. Because of you I started a brain retraining program with re-origin and I am already experiencing positive benefits. So thank you. Best wishes from Australia. ❤
How are you now?😊
@@ronA8te I’m doing a lot better thanks.
@@MrsNeanderthal Wow that's great 😊.. was there anything that helped you besides brain retraining or was it the main thing?
@@ronA8te it is a combination of many things.
@@MrsNeanderthal what brain training did you do? Any recommendations of therapy and specialist in Sydney?
This is amazing. I legit just posted a similar story on my channel about reconditioning after pots and brain retraining❤ synchronicity! 🎉😊
I'm so happy for you! I hope I can get to that stage one day. Although, I've recently given birth so my POTS is so much worse and it's hard to find time for my usual self-care habits which helped in the past xx
That’s incredible. So inspiring!!!
I am so happy for you Rachel! I have also found a ton of relief from my POTS by taking Corlanor. Healing opens up our hearts and our lives. ❤
So very happy for you!!!! This is incredible!!!🎉🎉🎉
Amazing, Rachel. Thank you so much for sharing this journey with us. Your perspective keeps me encouraged and focused on long term goals.
I recently had a vinous stent put in and it took a few months for it to work but now I finally feel better and thanks to Rachel when i would get upset I’m not getting better I saw here video where she said with some people the stent takes a few months to work like it did in my case thanks Rachel
Been watching your journey and am so glad for you! This gives me hope, ten years into treatment. 💚
Thank you so much for all of your videos 🙏🏻 you truly are a huge inspiration! Please can I ask, an apologies if you have covered this in a previous video but do you not think your decompression surgery helped in any way at all? Thanks so much 🙏🏻x
Do you think that your surgeries could have had something to do with your recovery? 🥰🙏🏻
Hey my resting heart rate is around 87 to 100 bpm but when i stan up it gets even higher 120 to 135. My ecg and echo are normal. But my doctors says that i have anxiety and gave inderal. I had an knee injury and been bedridden for 5 months i developed this condition after that. Can you tell me how long it took for you eliminate pots away, did you take any short term medication or any dietary changes.
How do you feel right now ?? Recovered??
@@vasudevakrishnanarunagiri7203 not really but i see some improvements. when i stand its mostly around 100 to 115 somedays it around 100 bpm but when i rest its always between 85 to 96. Whenever i workout it the the resting heart rate is even higher like around 95 to 108. I dunno what's the reason.
Awesome !!! Wonderful !
thank you so much!
So happy you are doing well!!
Love heals all❤
What helped regulate your nervous system the most?
She said DNRS
Are you still taking propanolol?
I’m not!
I'm still trying to get a fusion. I've tried regenerative therapy but...I can barely stand. I've been in bed since Feb. I need a craniocervical fusion. I'm dying.
So sorry to hear of what you’re going through. I really feel for you. Hoping all the best for you.
What regenerative therapy did you try and where on you? I feel like my issues start c0-c1 and go down into my upper collar bone shoulder. I'm weighing regenerative therapy, but I'm getting ready to do a Csf flow/blockage study to help get a clearer picture. I'm scared to do any procedures without going down every non invasive pathway first.
Thanks, how'd you get started with a fusion? Nothing shows up on my mri so no neurosurgeon will operate on me@@HealingWithRachael
so awesome!!!!
Does your heart rate when you are calm drop to 60s 70s ?
honestly i’m not sure! i haven’t taken it in a long time!
You give me hope! My daughter has been bedridden for almost 5 years. She is 17. Never made it to high school. I'm trying to convince her to do brain retraining. She just 🙄
She has to believe she can get well. Tell her I was bedridden for the first 5 years and thought I was going to die at some points. I’m now so much better. I have a lot of healing left but it IS possible!!!
@@casielee18did you do DNRS ?
@@princessdee01 yes. I’m currently still doing it! I did another version before I even knew what it was actually! When I was totally bedridden I’d watch RUclips videos of traveling and imagine myself there. Then I planned a Disney trip as if I was going, picked out food I wanted to try and all. Then I started sloowwwww. Walked to the mailbox one day. Weeks later a little further and eventually got to where I can walk about a mile without crashing. Took years but you have to start somewhere.
Thank God!!! So very happy for you💗
Thank you so much!!!
Congrats!!
Is your cci surgery hep to reduce pots symptom
It did not, unfortunately!
@@HealingWithRachael r u now better is your pots go way
@@partharoy6077 Yes I'm doing great now. Brain retraining has been the most helpful thing for healing my POTS. The carnivore diet has been impactful as well.
Congratulations!!!
thank you so much!
Another thing too, is it just because someone's heart rate who has pots doesn't go above 120 does it mean they don't meet the diagnostic criteria? If it goes up 30PPM for wonderling down and the heart rate is getting higher and it is sustained, it is pots. I think your video kind of is undermining different peoples, degree of pots and what they struggle with not. Everyone has a heart rate that surges up to 200 beats per minute. Because everybody weighs and everybody's heights are different. And you did show up to criteria in your video. Your heart rate went above 30PM just because it doesn't say 120 and over doesn't it's not pots.
No she's not. She's using her baseline. Everyone's is different.
Eg. My resting heart rate is 60 ish.
Standing up it jumps to 140 plus.
If I started getting 90 instead, that's an improvement.
But if I was still getting symptoms, then clearly I'm not getting better.
Go off your baseline
Are you still doing curve correction or neck weights?
I dont remember who u are