Yes, you're right. Taking steps to maintain a cool environment, engaging in gentle and appropriate exercise, and adopting a balanced and mindful approach to eating may be worth considering.
@@cfsrecoverywouldn’t this perpetuate hypervigilence though? Needing to make sure we’re around air conditioning, and watching what we eat etc… kind of also what got us in this mess to begin with, perfectionism, hypervigilence etc
@@networthassoc2006 yes that’s right, we shouldnt have to avoid anything normal like the sun and heat. We need to teach our selfs that these a normal. When we are in heat it’s normal for the heart rate to go higher, but if ur brain is scared of heat then it set of the stress response and make it go even more faster. Don’t avoid heat, food, exercise etc etc etc, gradually teach you’re brain that these are safe. Slowly over time
@@networthassoc2006 think of it this way If you avoid the sun, avoid exercise, avoid foods etc etc all you’re doing is keeping the illness going and shrinking youre life. How is that going to help you recover at all. You just have to gradually do these activities again. Also other things are at play, emotional issues, maybe mistreatment at work, maybe toxic relationship, there puzzles to healing.
Indeed, my experience with that doctor was incredibly fortunate. We can hope for more compassionate and understanding healthcare providers who can make a significant difference in the lives of people with conditions like CFS. 👼👨⚕️
Please never stop making these! You have no idea how much this is needed and is helping me. Because of these videos I decided my life is worth living, and I haven't unalived myself. I wish I could meet you and say thank you!!!! You are the only one who gets me.
My doc told me the same thing about heart rate. He said when you are out dancing for a couple of hours your heartrate is elevated. But you're having fun and not paying any attention to it. The heart can handle it.
You are God sent!! I was diagnosed with POTS, hEDS and MCAS in my second trimester of pregnancy with my now three year old. It’s been an absolute nightmare the last 11 years. I had no idea what was wrong with me. I just deal with my symptoms and sometimes end up in the ER because I freak out at my heart rate going up and adrenaline surges plus the hypersensitivity to many things especially in a flare. You explain it so well!! I was starting to lose hope. Im currently in a big flare and been in hospital 8 times in the last three months. My brother sent me this video so I am definitely going to keep watching and learning from you. Thank you 🙏 God bless ❤
Oh yes! He's got it figured out. I first got like this after a family member was taken fby his mother. That's the first time symptoms started. I did yoga for a week and it went away. I had no clue what had happened. Then... I got my covid vaccine.... omg... it came back 100x worse. But, since doing his practices and yoga and breathing, I am feeling INCREDIBLE,!!!
Thank you so much for your kind words! I'm grateful to be able to provide you with information and support. It's not easy to go through so much uncertainty and struggle, but you are incredibly strong for persevering through it all. Sending you lots of strength and healing thoughts. God bless you too! 🌟🙏❤️
Thank you for your feedback. Yes, avoiding unnecessary stressors and reducing the frequency of checking your blood pressure can be beneficial for your well-being.
Miguel, are you aware of CCI/AAI, hEDS, MCAS, CSF leaks as causes for POTS? Its super challenging to get those diagnosed and ruled out by MDs so how to know if the cause is the ANS? These symptoms overlap and make a completely mess.
Im really trying not to be bitter towards all the doctors at the VA but its a struggle. They just tell me i have fibromyalgia and all these problems are typical. Take motrin and try to deal best as i can. Thank you for explaining this and giving possible solutions.
I'm here to help and provide support. It's frustrating when you're seeking answers and facing challenges with medical care. Your proactive approach to finding solutions is commendable. You can also check our programs out and see if it's going to be a right fit: www.cfsrecovery.co/apply. You're doing great! 🌟💙😊
I have been struggling so bad the last 2 years. I can't get up an I just found the video on pots about 3 weeks ago I didn't know what was going on my doctor said it was migraines. I have had HIV for 30 years an struggling with that an about 4 years ago it would hit meet for a few hours a day but the last two years has been so bad that it last almost all day. I have been thinking I can't take it anymore. I can't keep living like this. Please pray for me. God bless
I find it quite ironic you talked about pots essentially being a wqy your body helps keep you safe from potential danger and the stressors of life. I find it ironic cause im going through therapy for DID which is dissociative identity disorder. That is basically another way your body helps keep you safe. Trauma caused your mind and body to not comprehend life properly geeowing up and it caused multiple personalities to help regulate the trauma. By you saying pots is basically yet another way my body has kept me safe it gave me a lot to th8nk about (like the possibility of the DID and pots symptoms i have being linked somehow with the root cause being a sense safety.) Also this was helpful cause it helps a person potentially regulate the symptoms by mental health vs physical health. With me having DID i know all too well how strong the mind can be and how it can affect the persons body
Wow this help me so much , I also tend to have anxiety always thinking of blood clots especially if my leg or thigh aches or something . I really hate pots , and by my heart beating fast I tend to always think something is wrong
Pots and CFS is miserable 😭 seriously my body feels so against me I can get energy to even stand up. bedridden 2 years, I take 5 steps forward and 20 steps back😣 since 2019 I’ve tried everything I feel
Slowly I believe in your recovery understanding. I have post vac and the symptoms come with waves. Last week I could walk 10 k and now I’m not able to even go to the bathroom. Last days I tried to take cold showers for few minutes.I thought it will make me more resilient to stress. But it wasn’t a good idea!!! I have now very very bad symptoms!!! I have now even problems to eat…my sleep….pain……but that shows clearly that my nervous system was way to much overstimulated.( cold showers, long walks, playing games on computer, telephone…) and brain gave me the warning signs…, heart rate, anxiety, pain….
I understand how frustrating it can be when symptoms fluctuate in waves, especially post-vaccination. It's important to pace yourself and respect your body's limits. Trying new activities like cold showers can seem beneficial, but it's crucial to pay attention to how your body responds. In this case, it seems true that the cold showers overstimulated your nervous system, leading to a worsening of symptoms. It's a valuable lesson that shows the importance of finding the right balance and listening to your body's warning signs, such as increased heart rate, anxiety, and pain. Take this as an opportunity to reassess your approach and make adjustments that support your healing journey. Feel free to join our CFS Thrivers Facebook community where we always have regular live sessions and interaction with others to help you more on this facebook.com/groups/586782782687101
@@cfsrecoveryhey miguel on the one side you say, when showering and heart rate gets through the roof no Problem, the heart can handle it, ignore it, and here you say high heart rate is a warning sign. So i cannot do simple exercise before the symptom high heart rate dissapears? And with excercises i mean going to the bathroom. As i am lying down i have a normal heart rate, but in the morning when i get up or in the night time because of dreaming i wake up with 130 pulse. After breathing and cooling down it is getting to normal until i need to get up again. So what to do?
I find the videos about adrenaline really interesting. I something feel depressed but I know how to come out if I put the effort, but sometimes when I feel good I get a huge hit of adrenaline, i'm guessing it's a nervous thing because it happens mostly when I socialise, even when I play computer games I get an adrenaline hit, sometimes i've made myself depressed intentionally so I can avoid the adrenaline, I would guess the way to deal with it would be to learn how to deal with the adrenaline rather than avoid it.
I feel you - adrenaline surges are a very common experience for some individuals, especially in social situations like in your case. Instead of trying to avoid it or intentionally depressing yourself, learning how to manage and cope with the adrenaline might be a more helpful approach. Consider exploring relaxation techniques, stress management strategies, and mindfulness practices to assist you in regulating the body's response to adrenaline. Best wishes!
You are most welcome. You can check our programs out and see if it's going to be a good fit: www.cfsrecovery.co/apply. Looking forward to connecting with you! 😊
My POTS came on after a Covid infection in 2021. I got lucky that the neurologist on the long Covid team saw my cardiac tests and paid attention to my systems. He ordered the tilt table test and I blacked out. Syncope is one of my most disturbing symptoms. It comes on so quickly that I’ve blacked out within seconds of feeling pre-syncope. Pre-syncope, for me, comes with dizziness, a strange, internal vibration, then tunnel vision and can lead to complete blackout for 3-5 minutes. Sometimes I don’t feel the syncope come on and simply standing up from sitting or bending over can result in a black out. I’ve gotten used to the heart rate fluctuations. I tend to have as much bradycardia as tachycardia. I don’t look at my watch anymore when I feel my heart race. I wear it because it notifies 911 if I don’t clear the fall. I did 18 months of neuro/cardiac rehab following the levine protocol after my long Covid/dysautonomia diagnoses. I walked 4-5 miles a day and had a daily yoga and dance practice prior to getting sick. I’m almost 3 years post infection and struggle to walk or stand for too long without the pre-syncope progression starting. I only walk distances with a roller walker when I’m out and about or on my treadmill at home. I do my yoga and Pilates on the floor so I don’t fall. I’ve adapted my exercise to avoid syncope as much as possible. Blood pooling is another symptom I struggle with. My feet and hands can turn blue if I stand too long. This gets worse with heat and humidity. I’ve started weekly saline infusions, and in cooler temperatures, I get about 3 days of less dizziness and a bit more energy after having an infusion. My neurologist and my functional medicine doctor have both told me that while the nervous system can heal, I’m probably going to have these symptoms for a long long time even with all the nervous system soothing techniques and other coping skills I learned in therapy and in further study of dysautonomia. I celebrate the good days and I get through the bad days as best as I can. I try not to dwell in fear, but I also use everything I know to mitigate and minimize my chances of syncope.
Have a look at these videos to get a better understanding of what's going on and how the body is trying to recalibrate itself. th-cam.com/video/Z5Bd6uM_oWE/w-d-xo.html Also, here's a playlist I created that will help you deal with symptoms if you're looking for more info on specifics: th-cam.com/play/PLJT8-UVmfsmKHgGkCQPKkmHgZL11LqvJa.html
I just gotback from doing my treadmill stress test and I'm very upset about it. I had the super fast hr (well over 100bpm. Possibly as high as 150bpm) I could only do 6 minutes before I had to stop. My heart was beating super fast and hard. My breathing was very heavy. It hurt to breath. I tried to tell the Dr this and he said im just not used to exercise (despite walking his recommended 30 minutes daily) I had to literally fall down to the exam table from how bad I felt. I laid down after a minute or 2 from getting lightheaded and dizzy. The Dr came back in (he was in and out of the room during the test the whole time) and asked why I was laying down (as if my high hr that stayed in the 100s and hyperventilating after only a 6 minute brisk walk wasn't any clue!) I told him I got dizzy and lightheaded. He chuckled and said your just not used to working out. He said it looks normal and see you in 3 months. Given that I don't know much about how a normal person would manage a stress test like that I don't know for sure if what I went through was actually normal but I truly don't think feeling like I was would be normal after a 6 minute brisk walk. Any information would be greatly appreciated. Also the dr said I don't need a tilt table test. And laughed when saying that.
@@tanyawieczorek6603 ya. My biggest issue is fatigue. Anywhere from I'm a bit weak and tired (just no energy vs tired from lack of sleep) to I have such low energy that if I don't lay down right now my body will do it for me. I feel blood pooling in my hands and feet when walking long distance and when I keep my hands down at my side for some time. Light and sound sensitivity. Dizziness and lightheadedness especially upon standing. I've repeatedly had it where I fall back down (or land on a loved one) from standing up too quickly. Pre syncope. If I'm actually tired (tired from sleep not fatigue), if I stand too quickly, if I'm standing long time, if I'm walking short distances (example would be crossing the street) or random times I would crash. Meaning I get brain fog and my thinking would start to shut down then my breathing would get heavy, then my body would start to get super heavy and eventually I can't move or speak but I'm aware of my surroundings. That can last anywhere from a few minutes to 15. From that symptom I did get diagnosed with psychogenic non epileptic seizures. (I went through the treatment for that but they stay. Not as severe but it still happens) I get fatigued if I eat heavy. I'm SUPER sensitive to the cold. I get weak, dizzy, lightheaded, vertigo, struggle to breath and brain fog and occasional pre syncope if I get hit with icy air (example would be high ac in stores or buses in the heat) heat does affect me occasionally but not as bad and that's rare. Having my hands above my head for extended time causes dizziness, lightheaded struggles with breathing (I cut my hair pixie short cause of this) occasional aches throughout my body. Stomach almost constantly aches. Occasional headaches but I'm not sure if it is sometimes migraines (headaches with light and sound sensitivity) Extreme difficulty with going up a flight of stairs. Needing to rest from heavy hr heavy breathing and lightheadedness. At home treatments: got a walker for when I need a place to sit and that reduced leg pain (issues with plantar fatciitis) struggles with breathing and lightheadedness. Got compression socks (20 to 30 compression) helped reduce brain fog. Got the pixie hair cut to reduce issues with hair brushing Started using a shower chair and disabled shower at the gym where I shower (currently homeless which makes my symptoms difficult) and that has reduced lightheadedness. Started noticing these issues shortly after I had my pregnancy back in 2011. Didn't originally going to the dr for these thinking it was depression from having a miscarriage. Life happened and I wasn't able to get adequate medical care for about 5 to 6 years. I started to feel the pre syncope pretty bad so I went to a neurologist. He diagnosed the PNES. Now that I see what is going on and becoming more aware of my symptoms and how they're not normal Started to go to a Dr. My primary care sent me to the cardiologist. My ekg came back normal. I asked him for a tilt table test when he ordered the stress test and he smiled when he said I didn't need one. Then the stress test went as I already wrote. Sorry for the very long post.
Please check these links. I hope they help! th-cam.com/video/YVbdFWtcZos/w-d-xo.htmlsi=HT3Fa-HqU0vChRSA th-cam.com/video/k_mljnKn8O4/w-d-xo.htmlsi=qdBehY9dfmU14ZVv
A lot of the symptoms you don't need to do anything, you just need to leave them be and they go away on their own! Have a look at these videos to get a better understanding of what's going on and how the body is trying to recalibrate itself. th-cam.com/video/Z5Bd6uM_oWE/w-d-xo.html Also, here's a playlist I created that will help you deal with symptoms if you're looking for more info on specifics: th-cam.com/play/PLJT8-UVmfsmKHgGkCQPKkmHgZL11LqvJa.html
On one of your videos i saw you mentioning to start your healing processes they gave you anxiety and depression pills, did that help with your high heart beats? Cause im looking forward in making a psychiatrist appointment, cause they can't find any problems with me.
Hi!! Quick question: if high heart rate symptoms come out of nowhere (at rest like sitting down, or while asleep), is it still considered NS dysregulation? I haven’t been diagnosed with POTS or any other heart condition but occasionally at random moments my heart will race.
I have some videos that may help your situation and dealing with those pots symptoms, check them out. Hopefully these help! Heart Rate Issues: th-cam.com/video/k67xEsLe11M/w-d-xo.html Internal Vibrations and Tremors: th-cam.com/video/4wxdebRbbZA/w-d-xo.html
I got POTS right after I. Got the Covid-19 vaccine and then I got ESB Virus 🦠 it’s been over 2 yrs. I was using a standup Walker but after I was up maybe 10 minutes I would get breathless & start getting dizzy if I couldn’t sit down or lay down I would Blackout so now I use a Transport Chair, I take a low dose of Beta Blockers & that helps some but still can’t stand or walk, when My Heart Rate goes back down it goes down fast & I get terrible headaches, I’m hoping it’ll go away like it started but that’s not going to h
Currently not passing out when standing or crouching during stretches or yoga. I sometimes counter the Orthostatic Hypotension with Caffeine but not daily due to the effect on my CNS in an excitable way. My though patterns have been healthy lately which has helped much however solving my current issue would be fantastic because my overall health has been improving. 🙏🏼
some doctors just say if you have high heart rate more than 100 , then you should see a doctor . i am 17 year old and preparing for my MBBS entrance exam , i just read about this in my text book and check out my pulse its more than 100 , then i got threatened then pulse goes on increasing to 150 . I saw on youtube doctors are just saying to diagnose if heart rate is greater than 100 . so when my physysian diagnosed me he got confused because he cannot find any symptoms also he suggested me to do some test of sugar , thyroid , CBC etc , all reports came normal except i have not done heart echo . and my doctor also told me that i am not of that age in which heart disease is seen . so i not done echo , and now i am alright beacuse of some proffessional doctors like him , who explains clearly and yaa if you have no symbtoms other , than you must exercise thats it .
Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects circulation (blood flow). It involves the nervous system and is characterized by an excessive increase in heart rate when transitioning from lying down to standing up that comes with different types of symptoms. May I ask what symptoms you may be struggling with ATM?
Yup! Here are some videos you can watch: th-cam.com/video/CavzAtFGMAY/w-d-xo.html th-cam.com/video/6xHuLnNx3mw/w-d-xo.html th-cam.com/video/nWvsSpNqjjY/w-d-xo.html Hope these helps! 🙂🙌
Please check these links. I hope they help! th-cam.com/video/CavzAtFGMAY/w-d-xo.htmlsi=P5AS8OthzJQV_0hr th-cam.com/video/2Ce8VXa37V0/w-d-xo.htmlsi=kkXzK20Q604vyMOy th-cam.com/video/7kLYGRKNlog/w-d-xo.htmlsi=BOihHofM1AvXDkcM
Good question, to be honest it’s not my place to say because I don’t understand your exact situation and legally I can’t recommend you anything. I can only share what I’ve experienced. I would advise to reach out and discuss this with your doctor! Hope you understand 🙂
in most cases it worsens POTS, try to change to decaffeinated coffee. works well for me. In the future when i will be recovered i will drink normal coffee in the morning only decaf over the day
Yes true , fear can make it worse but even in the absence of fear, hot weather, exercise, eating can set off the tachycardia as well 😢
Yes, you're right. Taking steps to maintain a cool environment, engaging in gentle and appropriate exercise, and adopting a balanced and mindful approach to eating may be worth considering.
@@cfsrecoverywouldn’t this perpetuate hypervigilence though? Needing to make sure we’re around air conditioning, and watching what we eat etc… kind of also what got us in this mess to begin with, perfectionism, hypervigilence etc
@@networthassoc2006 yes that’s right, we shouldnt have to avoid anything normal like the sun and heat. We need to teach our selfs that these a normal. When we are in heat it’s normal for the heart rate to go higher, but if ur brain is scared of heat then it set of the stress response and make it go even more faster. Don’t avoid heat, food, exercise etc etc etc, gradually teach you’re brain that these are safe. Slowly over time
@@ezza1236 I’m hoping he’ll answer bc it’s a bit of a confused message for the brain to try and avoid things that agitate is
@@networthassoc2006 think of it this way
If you avoid the sun, avoid exercise, avoid foods etc etc all you’re doing is keeping the illness going and shrinking youre life. How is that going to help you recover at all. You just have to gradually do these activities again. Also other things are at play, emotional issues, maybe mistreatment at work, maybe toxic relationship, there puzzles to healing.
Miguel that doc was an angel that helped you, one in a million! What a shame we don’t have more like him!!!!!!
Indeed, my experience with that doctor was incredibly fortunate. We can hope for more compassionate and understanding healthcare providers who can make a significant difference in the lives of people with conditions like CFS. 👼👨⚕️
Please never stop making these! You have no idea how much this is needed and is helping me. Because of these videos I decided my life is worth living, and I haven't unalived myself. I wish I could meet you and say thank you!!!! You are the only one who gets me.
I’m glad my videos resonates with you 😊
One of the best descriptions, of why we get pots, I’ve heard yet. Thank you so much for sharing your story and wisdom ❤
You are so welcome. I'm so glad my video resonated with you 🙂❤️
My doc told me the same thing about heart rate. He said when you are out dancing for a couple of hours your heartrate is elevated. But you're having fun and not paying any attention to it. The heart can handle it.
Wow... Praise God... That's an Awesome Statement ❤❤❤
Easy to say....
I cannot believe I found this video- Such such good advice. ❤
Thank you so much! 😊❤️
I started using my heart rate monitor for biofeedback. I use it to practice bringing it back down.
I created a video about this. Check this out: th-cam.com/video/NnOHE4Q7IDQ/w-d-xo.htmlsi=u5kBuTigYyTeAkft
Same
I literally can’t believe your words, they are literally my life…
Glad it resonated with you 😊
You are God sent!! I was diagnosed with POTS, hEDS and MCAS in my second trimester of pregnancy with my now three year old. It’s been an absolute nightmare the last 11 years. I had no idea what was wrong with me. I just deal with my symptoms and sometimes end up in the ER because I freak out at my heart rate going up and adrenaline surges plus the hypersensitivity to many things especially in a flare. You explain it so well!! I was starting to lose hope. Im currently in a big flare and been in hospital 8 times in the last three months. My brother sent me this video so I am definitely going to keep watching and learning from you. Thank you 🙏 God bless ❤
Oh yes! He's got it figured out. I first got like this after a family member was taken fby his mother. That's the first time symptoms started. I did yoga for a week and it went away. I had no clue what had happened. Then... I got my covid vaccine.... omg... it came back 100x worse. But, since doing his practices and yoga and breathing, I am feeling INCREDIBLE,!!!
Thank you so much for your kind words! I'm grateful to be able to provide you with information and support. It's not easy to go through so much uncertainty and struggle, but you are incredibly strong for persevering through it all. Sending you lots of strength and healing thoughts. God bless you too! 🌟🙏❤️
You are so spot on. In addition, stop taking your blood pressure. Both these things are stressors. I am watching you and learning.
Thank you for your feedback. Yes, avoiding unnecessary stressors and reducing the frequency of checking your blood pressure can be beneficial for your well-being.
Miguel, are you aware of CCI/AAI, hEDS, MCAS, CSF leaks as causes for POTS? Its super challenging to get those diagnosed and ruled out by MDs so how to know if the cause is the ANS? These symptoms overlap and make a completely mess.
Thank you for sharing! 😊
Im really trying not to be bitter towards all the doctors at the VA but its a struggle. They just tell me i have fibromyalgia and all these problems are typical. Take motrin and try to deal best as i can. Thank you for explaining this and giving possible solutions.
I'm here to help and provide support. It's frustrating when you're seeking answers and facing challenges with medical care. Your proactive approach to finding solutions is commendable. You can also check our programs out and see if it's going to be a right fit: www.cfsrecovery.co/apply. You're doing great! 🌟💙😊
The VA doctors are pure evil. They don’t care at all and get off on suffering
Thanks Miguel! Really appreciate your work!
It's my pleasure - you're most welcome!
I have been struggling so bad the last 2 years. I can't get up an I just found the video on pots about 3 weeks ago I didn't know what was going on my doctor said it was migraines. I have had HIV for 30 years an struggling with that an about 4 years ago it would hit meet for a few hours a day but the last two years has been so bad that it last almost all day. I have been thinking I can't take it anymore. I can't keep living like this. Please pray for me. God bless
Thank you for sending this. We're rooting for you. You got this! 💪
This video came exactly on the right time😅 Normally when I stand my pulse is at 110. And now since 2 days at 150!!
Good to know my video helped!
really amazing job
you know u r in very few person who give this knowledge in the world
love from india ❤❤❤
Hi from india as well. Do you have CFS?
@@afshasultana6294 yes
You're so welcome. I'm so happy to help!
I find it quite ironic you talked about pots essentially being a wqy your body helps keep you safe from potential danger and the stressors of life. I find it ironic cause im going through therapy for DID which is dissociative identity disorder. That is basically another way your body helps keep you safe. Trauma caused your mind and body to not comprehend life properly geeowing up and it caused multiple personalities to help regulate the trauma. By you saying pots is basically yet another way my body has kept me safe it gave me a lot to th8nk about (like the possibility of the DID and pots symptoms i have being linked somehow with the root cause being a sense safety.) Also this was helpful cause it helps a person potentially regulate the symptoms by mental health vs physical health. With me having DID i know all too well how strong the mind can be and how it can affect the persons body
Glad to help! We're just here if you have any more questions. 😊
the best in the game! 🎉 Keep up the great work, brother. Greets from Germany! 😊✌️
Thank you so much for your kind words! 🌟 Greetings to you in Germany as well! Your support means a lot. Keep shining and stay positive! 🇩🇪🤗🌈
Wow this help me so much , I also tend to have anxiety always thinking of blood clots especially if my leg or thigh aches or something . I really hate pots , and by my heart beating fast I tend to always think something is wrong
Pots and CFS is miserable 😭 seriously my body feels so against me I can get energy to even stand up. bedridden 2 years, I take 5 steps forward and 20 steps back😣 since 2019 I’ve tried everything I feel
Please watch this video: th-cam.com/video/CavzAtFGMAY/w-d-xo.htmlsi=OTnu8PnFJCAlTnml
Look up medical medium
Slowly I believe in your recovery understanding. I have post vac and the symptoms come with waves. Last week I could walk 10 k and now I’m not able to even go to the bathroom. Last days I tried to take cold showers for few minutes.I thought it will make me more resilient to stress. But it wasn’t a good idea!!! I have now very very bad symptoms!!! I have now even problems to eat…my sleep….pain……but that shows clearly that my nervous system was way to much overstimulated.( cold showers, long walks, playing games on computer, telephone…) and brain gave me the warning signs…, heart rate, anxiety, pain….
I understand how frustrating it can be when symptoms fluctuate in waves, especially post-vaccination. It's important to pace yourself and respect your body's limits. Trying new activities like cold showers can seem beneficial, but it's crucial to pay attention to how your body responds. In this case, it seems true that the cold showers overstimulated your nervous system, leading to a worsening of symptoms. It's a valuable lesson that shows the importance of finding the right balance and listening to your body's warning signs, such as increased heart rate, anxiety, and pain. Take this as an opportunity to reassess your approach and make adjustments that support your healing journey. Feel free to join our CFS Thrivers Facebook community where we always have regular live sessions and interaction with others to help you more on this facebook.com/groups/586782782687101
🙏🏼
@@cfsrecoveryhey miguel on the one side you say, when showering and heart rate gets through the roof no Problem, the heart can handle it, ignore it, and here you say high heart rate is a warning sign. So i cannot do simple exercise before the symptom high heart rate dissapears? And with excercises i mean going to the bathroom. As i am lying down i have a normal heart rate, but in the morning when i get up or in the night time because of dreaming i wake up with 130 pulse. After breathing and cooling down it is getting to normal until i need to get up again. So what to do?
Extremely helpful. Thanks friend 😊
Most welcome!
I find the videos about adrenaline really interesting. I something feel depressed but I know how to come out if I put the effort, but sometimes when I feel good I get a huge hit of adrenaline, i'm guessing it's a nervous thing because it happens mostly when I socialise, even when I play computer games I get an adrenaline hit, sometimes i've made myself depressed intentionally so I can avoid the adrenaline, I would guess the way to deal with it would be to learn how to deal with the adrenaline rather than avoid it.
I feel you - adrenaline surges are a very common experience for some individuals, especially in social situations like in your case. Instead of trying to avoid it or intentionally depressing yourself, learning how to manage and cope with the adrenaline might be a more helpful approach. Consider exploring relaxation techniques, stress management strategies, and mindfulness practices to assist you in regulating the body's response to adrenaline. Best wishes!
Thank you, Miguel. So is a kind of graded exercise included in the program? I tend to get confused if it is advisable or not 😅.
You are most welcome. You can check our programs out and see if it's going to be a good fit: www.cfsrecovery.co/apply.
Looking forward to connecting with you! 😊
Thank you for this Miguel!🙏🏼
You're welcome. You got this!
My POTS came on after a Covid infection in 2021. I got lucky that the neurologist on the long Covid team saw my cardiac tests and paid attention to my systems. He ordered the tilt table test and I blacked out.
Syncope is one of my most disturbing symptoms. It comes on so quickly that I’ve blacked out within seconds of feeling pre-syncope. Pre-syncope, for me, comes with dizziness, a strange, internal vibration, then tunnel vision and can lead to complete blackout for 3-5 minutes.
Sometimes I don’t feel the syncope come on and simply standing up from sitting or bending over can result in a black out.
I’ve gotten used to the heart rate fluctuations. I tend to have as much bradycardia as tachycardia. I don’t look at my watch anymore when I feel my heart race. I wear it because it notifies 911 if I don’t clear the fall.
I did 18 months of neuro/cardiac rehab following the levine protocol after my long Covid/dysautonomia diagnoses. I walked 4-5 miles a day and had a daily yoga and dance practice prior to getting sick. I’m almost 3 years post infection and struggle to walk or stand for too long without the pre-syncope progression starting. I only walk distances with a roller walker when I’m out and about or on my treadmill at home. I do my yoga and Pilates on the floor so I don’t fall.
I’ve adapted my exercise to avoid syncope as much as possible.
Blood pooling is another symptom I struggle with. My feet and hands can turn blue if I stand too long. This gets worse with heat and humidity. I’ve started weekly saline infusions, and in cooler temperatures, I get about 3 days of less dizziness and a bit more energy after having an infusion.
My neurologist and my functional medicine doctor have both told me that while the nervous system can heal, I’m probably going to have these symptoms for a long long time even with all the nervous system soothing techniques and other coping skills I learned in therapy and in further study of dysautonomia.
I celebrate the good days and I get through the bad days as best as I can. I try not to dwell in fear, but I also use everything I know to mitigate and minimize my chances of syncope.
Thank you for sharing. You got this! 💪
I mostly track heart rate variability. I can see my numbers improve the more meditation and brain training I do.
Thanks for sharing!
I just found your channel 🙏 is sudden high blood pressure spike also symptom of cfs?
Have a look at these videos to get a better understanding of what's going on and how the body is trying to recalibrate itself.
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Also, here's a playlist I created that will help you deal with symptoms if you're looking for more info on specifics: th-cam.com/play/PLJT8-UVmfsmKHgGkCQPKkmHgZL11LqvJa.html
I just gotback from doing my treadmill stress test and I'm very upset about it. I had the super fast hr (well over 100bpm. Possibly as high as 150bpm) I could only do 6 minutes before I had to stop. My heart was beating super fast and hard. My breathing was very heavy. It hurt to breath. I tried to tell the Dr this and he said im just not used to exercise (despite walking his recommended 30 minutes daily) I had to literally fall down to the exam table from how bad I felt. I laid down after a minute or 2 from getting lightheaded and dizzy. The Dr came back in (he was in and out of the room during the test the whole time) and asked why I was laying down (as if my high hr that stayed in the 100s and hyperventilating after only a 6 minute brisk walk wasn't any clue!) I told him I got dizzy and lightheaded. He chuckled and said your just not used to working out. He said it looks normal and see you in 3 months.
Given that I don't know much about how a normal person would manage a stress test like that I don't know for sure if what I went through was actually normal but I truly don't think feeling like I was would be normal after a 6 minute brisk walk. Any information would be greatly appreciated.
Also the dr said I don't need a tilt table test. And laughed when saying that.
Do you have POTS symptoms?
@@tanyawieczorek6603 ya.
My biggest issue is fatigue. Anywhere from I'm a bit weak and tired (just no energy vs tired from lack of sleep) to I have such low energy that if I don't lay down right now my body will do it for me. I feel blood pooling in my hands and feet when walking long distance and when I keep my hands down at my side for some time.
Light and sound sensitivity.
Dizziness and lightheadedness especially upon standing. I've repeatedly had it where I fall back down (or land on a loved one) from standing up too quickly.
Pre syncope. If I'm actually tired (tired from sleep not fatigue), if I stand too quickly, if I'm standing long time, if I'm walking short distances (example would be crossing the street) or random times I would crash. Meaning I get brain fog and my thinking would start to shut down then my breathing would get heavy, then my body would start to get super heavy and eventually I can't move or speak but I'm aware of my surroundings. That can last anywhere from a few minutes to 15. From that symptom I did get diagnosed with psychogenic non epileptic seizures. (I went through the treatment for that but they stay. Not as severe but it still happens)
I get fatigued if I eat heavy.
I'm SUPER sensitive to the cold. I get weak, dizzy, lightheaded, vertigo, struggle to breath and brain fog and occasional pre syncope if I get hit with icy air (example would be high ac in stores or buses in the heat) heat does affect me occasionally but not as bad and that's rare.
Having my hands above my head for extended time causes dizziness, lightheaded struggles with breathing (I cut my hair pixie short cause of this) occasional aches throughout my body. Stomach almost constantly aches.
Occasional headaches but I'm not sure if it is sometimes migraines (headaches with light and sound sensitivity)
Extreme difficulty with going up a flight of stairs. Needing to rest from heavy hr heavy breathing and lightheadedness.
At home treatments: got a walker for when I need a place to sit and that reduced leg pain (issues with plantar fatciitis) struggles with breathing and lightheadedness.
Got compression socks (20 to 30 compression) helped reduce brain fog. Got the pixie hair cut to reduce issues with hair brushing
Started using a shower chair and disabled shower at the gym where I shower (currently homeless which makes my symptoms difficult) and that has reduced lightheadedness.
Started noticing these issues shortly after I had my pregnancy back in 2011. Didn't originally going to the dr for these thinking it was depression from having a miscarriage. Life happened and I wasn't able to get adequate medical care for about 5 to 6 years. I started to feel the pre syncope pretty bad so I went to a neurologist. He diagnosed the PNES. Now that I see what is going on and becoming more aware of my symptoms and how they're not normal Started to go to a Dr. My primary care sent me to the cardiologist. My ekg came back normal. I asked him for a tilt table test when he ordered the stress test and he smiled when he said I didn't need one. Then the stress test went as I already wrote.
Sorry for the very long post.
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My adrenal dumps happen mostly at night lying down , not when standing…do I have classic POTS or dysautonomia
A lot of the symptoms you don't need to do anything, you just need to leave them be and they go away on their own!
Have a look at these videos to get a better understanding of what's going on and how the body is trying to recalibrate itself.
th-cam.com/video/Z5Bd6uM_oWE/w-d-xo.html
Also, here's a playlist I created that will help you deal with symptoms if you're looking for more info on specifics: th-cam.com/play/PLJT8-UVmfsmKHgGkCQPKkmHgZL11LqvJa.html
This sounds like anxiety? What's the difference between pots and anxiety. How do I know the difference?
Please check this link. I hope it helps!
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Ahhh yes the all knowing google. You tell people not to wear a heart monitor but tell them to be hyper vigilant about ac and gentle movements
Well said 😊
When i sleep my heart is slow calm but when i open my eyes it increases immediately palpitations
How long have you been experiencing this?
Thank You 🙏🏼
You’re welcome 😊
On one of your videos i saw you mentioning to start your healing processes they gave you anxiety and depression pills, did that help with your high heart beats? Cause im looking forward in making a psychiatrist appointment, cause they can't find any problems with me.
Hi!! Quick question: if high heart rate symptoms come out of nowhere (at rest like sitting down, or while asleep), is it still considered NS dysregulation? I haven’t been diagnosed with POTS or any other heart condition but occasionally at random moments my heart will race.
Hello! Here's a video I made about that: th-cam.com/video/dOarkdJhGDQ/w-d-xo.html
I hope this helps! 😊
My pots has my heart jumping up to 210 bpm for up to 30 seconds, and as low as 45 bpm and jumps back to normal all within 2 minutes.
I have some videos that may help your situation and dealing with those pots symptoms, check them out. Hopefully these help!
Heart Rate Issues: th-cam.com/video/k67xEsLe11M/w-d-xo.html
Internal Vibrations and Tremors: th-cam.com/video/4wxdebRbbZA/w-d-xo.html
10 years of this!
May I ask what symptoms you may be struggling with ATM?
@@cfsrecovery pots symptoms
What about heart rate regulation issues160’s to
Low 40’s struggling to stabilize
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I got POTS after COVID then later in the year got EBV/mono and all bets were off. Also why not give credit to the CFS HEALTH program you went through!
Same I'm 19 months into LC. How are you now? Did you get the visible veins throughout the body?
I got POTS right after I. Got the Covid-19 vaccine and then I got ESB Virus 🦠 it’s been over 2 yrs. I was using a standup Walker but after I was up maybe 10 minutes I would get breathless & start getting dizzy if I couldn’t sit down or lay down I would Blackout so now I use a Transport Chair, I take a low dose of Beta Blockers & that helps some but still can’t stand or walk, when My Heart Rate goes back down it goes down fast & I get terrible headaches, I’m hoping it’ll go away like it started but that’s not going to h
I got mono and then COVID twice after lol. Wondering if I have POTS or another condition.
Interesting POTS is like the opposite of Orthostatic Hypotension that I have.
What are the things you struggle with most at the moment?
Currently not passing out when standing or crouching during stretches or yoga. I sometimes counter the Orthostatic Hypotension with Caffeine but not daily due to the effect on my CNS in an excitable way. My though patterns have been healthy lately which has helped much however solving my current issue would be fantastic because my overall health has been improving. 🙏🏼
So in a nutshell what is the cure for this hyperactive nervous system in longer run? This pots has made my life hell. I need an answer
Here's a video I made about this: th-cam.com/video/0a5jCFGVPck/w-d-xo.htmlsi=G_ZYDP7gd3orgl6h
You can also check other of my free videos. Thanks! 😊
Look up medical medium
This is what I need, me and my watch have a love hate relationship. Like an abusive parter you know isn’t good but keep going back to 😅
Lol, I feel you bro!
The Kiss method.....Keep It Simple Stupid.....love love love it Miguel.....thnx
Yes 🙌
some doctors just say if you have high heart rate more than 100 , then you should see a doctor . i am 17 year old and preparing for my MBBS entrance exam , i just read about this in my text book and check out my pulse its more than 100 , then i got threatened then pulse goes on increasing to 150 . I saw on youtube doctors are just saying to diagnose if heart rate is greater than 100 . so when my physysian diagnosed me he got confused because he cannot find any symptoms also he suggested me to do some test of sugar , thyroid , CBC etc , all reports came normal except i have not done heart echo . and my doctor also told me that i am not of that age in which heart disease is seen . so i not done echo , and now i am alright beacuse of some proffessional doctors like him , who explains clearly and yaa if you have no symbtoms other , than you must exercise thats it .
What is pots
Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects circulation (blood flow). It involves the nervous system and is characterized by an excessive increase in heart rate when transitioning from lying down to standing up that comes with different types of symptoms. May I ask what symptoms you may be struggling with ATM?
I’ve been able to send my heart rate up to 180 from fear. All went away once I threw my pulse oximeter away
Good to know 😁
Also, I use heart rate monitors and have 0 issue with it. Weird advice. Just because this happens to you doesn’t mean everyone with POTS is anxious
Good for you 😁
Why the adrenaline rush is not leaving the system? When finaly the fatigue ?
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Do you know of any patient who’s pots syndrome has fully went away?
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Hope these helps! 🙂🙌
Try 220 bpm and 24/7 adrenaline dumps…. If I didn’t use a heart monitor I’d be dead
Please don’t not use a heart rate monitor. It saved my life
Thank you for sharing! 😊
It can be nerve damage and lifelong disease.
Thanks for your insight!
I am suffering with pots after meals my heart rate goes high anybody have same symptom please tell me
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I'm taking a medication that lowers the heart rate a little. What do you think about?
I take propranolol and it makes a difference
Good question, to be honest it’s not my place to say because I don’t understand your exact situation and legally I can’t recommend you anything. I can only share what I’ve experienced. I would advise to reach out and discuss this with your doctor! Hope you understand 🙂
My doctor prescribed me ivabradine and compression stalkings
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What role does caffeine play in POTS Recovery in your experience?
in most cases it worsens POTS, try to change to decaffeinated coffee. works well for me. In the future when i will be recovered i will drink normal coffee in the morning only decaf over the day
@@alias701I miss my coffee. I can't even tolerate decaf...or any alcohol whatsoever
Me…every. single. day.
I understand how frustrating this can be. I hope you can follow the strategies shared to find some relief!
This is ridiculous. It is NOT ANXIETY i’m sick of these doctors saying this
Never said it was all anxiety, did you watch the video?