@trh446 I just measure my powder out,mix it with my water and keep it in the refrigerator, now I'm only drinking 16 Oz a day but initially I would drink 2
Can you make more of these? I've been diagnosed with some sort of dysautonomia, honestly very likely POTS, and I've been utterly bedridden since August. This one was great but are there more? I found a pdf of the levine protocol but I don't know what some of those would look like laying down.
Hi Brandie, there are great support groups on Facebook. POTS(Postural Orthostatic Tachycardia Syndrome)Support Group is on there & there’s links to other groups and organizations. I hope that helps. I know there’s lots of discussions about exercise. I wish you the best and hope you find some things that help you. Gentle hugs from a fellow POTSIE💚
Adequate salt and water during pre workout has been helping me stabilize my BP and blood volume before a workout to help with lightheadedness and fatigue. Too much salt and or water makes my BP and pressure too high and I have to wait until it clears out before I can do any sitting standing movements. Hope anyone else dealing with pots for the first time sees this message, it may help a bit.
The type of salt matters. Table salt only has 2 minerals which are harmful by themselves. Celtic salt has 84 essential minerals which is the most you can get from any salt. Himalayan is also a good choice but doesn’t have as many as Celtic salt does. Hope this helps.
@@bestill6635 Thank you, its been 2 years and i've gotten better and figuring out how my body works. I've come to notice that a regular amount of salt per meal is sufficient enough to keep me regular, any extra or any less is what causes issues. I've also come to notice that more water is detrimental than less, I also no longer drink a cup immedietly when I feel unwell rather I drink 200ml and wait 15 minutes before I decide on drinking another, its helped me from overhydrating.
A fan fav of many POTS patients is LMNT Keto Electrolyte Powder, I’ve only tried the Citrus Salt version so far, but any flavor (with salt in the name) is something to check out.
You are right, there are a lot of options and each individual’s needs can vary! We do often use NUUN tablets. I would recommend speaking with a POTS aware registered about your diet and what your needs are to find the best option for you. If you are in Texas our dietitian does do telehealth for any visits outside of Waco! If not, check out the EDS society resource list for RD recs in your state.
Hi i got a question my heart is waking me up most mornings and my digestion is so bad that I can't eat much im 40 years old had this for 4 years when i stand up my heart goes to 160 sometimes so should i simply do exercises laying down and for how long and is it ok to do tbem while my heart is racing cos im so ill i cant move ty
Thank you for your question, we are sorry to hear about your health difficulties. Fist, we do recommend everyone follow up with your physician as heart symptoms can be very serious. Once ruled safe for exercise by your physician and physical therapist, if your heart rate continues to increase this rapidly, you can slow the speed of exercises, do more reclined exercises, and transition from lying down to standing in slower stages (rest on your side, then sit, then stand). If you have POTS, getting up too quickly can further contribute to your symptoms. For a POTS diagnosis you can also look into salt and electrolyte supplementation (again under the direction of a physician). We wish you luck on your health journey and hope you find a medical team who can further help you. **This is general information and should NOT be used as a substitute for seeking treatment from a qualified medical professional**
This was what I was wondering my heart rate will shoot up to 145 sometimes just by standing up or within 3 minutes if cardio and I'm not sure if I should stop totally, just slow down or do something different. It scares The living daylights out of me and it scares me so much I haven't worked out for months. I can't even stand at the sink and clean an entire sink of dishes before I'm leaning over on the counter or having to sit bc I'll pass out. My heart goes crazy when I'm trying to go to sleep, feels like I'll suffocate in my sleep bc I can't take in breaths like I normally can if I'm sitting or walking. I have POTS but lately I feel like it's more than that... Especially when I have full on episodes identical to a heart attack. Everything looks like a heart attack at the time when they're looking at my physical symptoms, heart rate and blood pressure but when we do an ECG or EKG everything checks out to be 'fine'... Has anyone been pushing for an EKG machine that detects heart disease in women better seeing that the EKG machines were based off of a male's body? It seems that by now we would have already done this.
@@compleowellness just an addition to your comment... Compression stockings I've heard can also help as well. I haven't tried this yet myself but I'm looking into it. I really want to get back to working out, strength training\weights are my favorite but it's quite scary if you're trying to lift heavy. I can't seem to do it at all anymore just doing squats without any weights causes me to not be able to do any more because I'll get too light-headed and be sick for hours after. now it seems like I literally avoid everything and I want to live again. I've had this issue since I was a child(fainting w\ cold sweats) but the symptoms have came and gone throughout my life but now they're more pronounced and pretty consistent (I'm 37) Is it normal for a pots patient to be sick for days after doing anything strenuous? Because that's what happens to me... in one of my other comments I was saying I feel like there's more going on. Doctors and I are still trying to figure it out. BTW I do have a team of physicians I work with. I'm just looking for your general opinion. I will not use it as medical advice and I'll do my own research as well as talking to my doctor about anything you say. Thanks.
@@mandielou Thank you for your thoughtful replies, I am so glad you are working with a team of physicians. The EDS Society has great resources on their website for finding providers familiar with these specific symptoms. As you can imagine, every patient is so different but yes I have had patients where if they overdo it for the current level, they do have a flare up or days of symptoms. I would try to find a physical therapist in addition to your team of physicians with EDS/POTS experience (even if you don't have EDS, they will understand your current symptoms) and let them help you dose your exercising. When having been out of the practice of exercise for an extended period of time it requires very specific targeted strengthening as well as very gradual dosing of exercises to meet current goals. A therapist can help with exercise dosing as you progress consistently monitoring symptoms and the rate of progression. Pilates can also be very helpful as well. Compression stockings have helped many of my patients. That is something we try when appropriate. *This is general information and should NOT be used as a substitute for seeking treatment from a qualified medical professional*
@@mandielou yeah it's called post extertional malaise. Avoid or reduce by keeping under a certain heart rate limit (work out for you what that is). Mine is 112, which doesn't take a lot. But don't let it stop you doing all movement as movement counters venous pooling (blood sitting in veins in legs or tummy) which is part of pots. Compression helps a bit w this esp if you put it on first thing. This video is v good re how to do movement and build up: ua-cam.com/video/T_m4f3p215g/v-deo.html
This is great short to the point view and appreciate you flagging that it is part of broader tx. Both meds and movement have been crucial in my greatly greatly improved health. I've started doing morning ankle flexing & extend straighten knees before getting up. But I hadn't thought of doing the full set of lower body muscles and in sequence from toes to hips. Question - Is that deliberate sequence to help move pooled blood? Will try this 👏
I was just diagnosed with POTS and was given the chop exercise regimen but my legs are so weak due to the disability I have Charcott Marie tooth so a lot of the exercises are not feasible for me. What are some Exercises for someone who has no strength in their legs? From what I understand it leg movements are a big deal when it comes to exercises with pots because blood rushes to your legs and moving your legs gets it back up to the heart, is that correct?
Leg exercises and specifically strengthening the calves can be very important! It is always best to get individual plans from a physical therapist. Basic standing heel raises for calves, practicing sit to stand with no arms and progressing to squats are a great place to start!
"you might feel like you want to faint" 🤔 No I don't feel like I want to faint.. I either feel like I will faint or do faint. I know she didn't mean to say that but still... Thanks for the video & tips.
Anyone and everyone who uploads content on UA-cam should be investing in lavalier microphones. I can barely understand what this woman is saying because of the echo, and her distance from the mic
1:38 is where the movements start
Thanks so much
Thanks so much for this video. I've been struggling with POTS, but it keeps getting diagnosed as Anxiety
Me too
@@tishasg electrolytes have helped me tremendously. I hope healing for you 🙏
How much electrolytes per day do u take ? I am trying to better my symptoms to
@trh446 I just measure my powder out,mix it with my water and keep it in the refrigerator, now I'm only drinking 16 Oz a day but initially I would drink 2
I have both 🥲
Can you make more of these? I've been diagnosed with some sort of dysautonomia, honestly very likely POTS, and I've been utterly bedridden since August. This one was great but are there more? I found a pdf of the levine protocol but I don't know what some of those would look like laying down.
Hi Brandie, there are great support groups on Facebook. POTS(Postural Orthostatic Tachycardia Syndrome)Support Group is on there & there’s links to other groups and organizations. I hope that helps. I know there’s lots of discussions about exercise. I wish you the best and hope you find some things that help you. Gentle hugs from a fellow POTSIE💚
If you sit backwards on your bed with your legs going up your headboard you can adapt most seated floor workouts into lying down workouts
@@BankruptMonkeythis is genius
Adequate salt and water during pre workout has been helping me stabilize my BP and blood volume before a workout to help with lightheadedness and fatigue. Too much salt and or water makes my BP and pressure too high and I have to wait until it clears out before I can do any sitting standing movements.
Hope anyone else dealing with pots for the first time sees this message, it may help a bit.
The type of salt matters. Table salt only has 2 minerals which are harmful by themselves. Celtic salt has 84 essential minerals which is the most you can get from any salt. Himalayan is also a good choice but doesn’t have as many as Celtic salt does. Hope this helps.
@@bestill6635 Thank you, its been 2 years and i've gotten better and figuring out how my body works. I've come to notice that a regular amount of salt per meal is sufficient enough to keep me regular, any extra or any less is what causes issues. I've also come to notice that more water is detrimental than less, I also no longer drink a cup immedietly when I feel unwell rather I drink 200ml and wait 15 minutes before I decide on drinking another, its helped me from overhydrating.
@@linkswords10update
This gives me hope. Thank you.
We are so glad this video was encouraging!
I was just diagnosed with Pots a month ago.
I loved these tips and doing them really helped me. Thank you
How feeling right now you are just tell me about POTS
We are so happy they helped you!
Almost impossible to understand! Too far from microphone & background noise. ☹️
Hi, what type of salt tablet should we take? There are so many options for different things.
A fan fav of many POTS patients is LMNT Keto Electrolyte Powder, I’ve only tried the Citrus Salt version so far, but any flavor (with salt in the name) is something to check out.
You are right, there are a lot of options and each individual’s needs can vary! We do often use NUUN tablets. I would recommend speaking with a POTS aware registered about your diet and what your needs are to find the best option for you. If you are in Texas our dietitian does do telehealth for any visits outside of Waco! If not, check out the EDS society resource list for RD recs in your state.
Very helpful❤
We are glad the video was helpful!
Hi i got a question my heart is waking me up most mornings and my digestion is so bad that I can't eat much im 40 years old had this for 4 years when i stand up my heart goes to 160 sometimes so should i simply do exercises laying down and for how long and is it ok to do tbem while my heart is racing cos im so ill i cant move ty
Thank you for your question, we are sorry to hear about your health difficulties. Fist, we do recommend everyone follow up with your physician as heart symptoms can be very serious. Once ruled safe for exercise by your physician and physical therapist, if your heart rate continues to increase this rapidly, you can slow the speed of exercises, do more reclined exercises, and transition from lying down to standing in slower stages (rest on your side, then sit, then stand). If you have POTS, getting up too quickly can further contribute to your symptoms. For a POTS diagnosis you can also look into salt and electrolyte supplementation (again under the direction of a physician). We wish you luck on your health journey and hope you find a medical team who can further help you. **This is general information and should NOT be used as a substitute for seeking treatment from a qualified medical professional**
This was what I was wondering my heart rate will shoot up to 145 sometimes just by standing up or within 3 minutes if cardio and I'm not sure if I should stop totally, just slow down or do something different. It scares The living daylights out of me and it scares me so much I haven't worked out for months. I can't even stand at the sink and clean an entire sink of dishes before I'm leaning over on the counter or having to sit bc I'll pass out. My heart goes crazy when I'm trying to go to sleep, feels like I'll suffocate in my sleep bc I can't take in breaths like I normally can if I'm sitting or walking. I have POTS but lately I feel like it's more than that... Especially when I have full on episodes identical to a heart attack. Everything looks like a heart attack at the time when they're looking at my physical symptoms, heart rate and blood pressure but when we do an ECG or EKG everything checks out to be 'fine'...
Has anyone been pushing for an EKG machine that detects heart disease in women better seeing that the EKG machines were based off of a male's body? It seems that by now we would have already done this.
@@compleowellness just an addition to your comment... Compression stockings I've heard can also help as well. I haven't tried this yet myself but I'm looking into it. I really want to get back to working out, strength training\weights are my favorite but it's quite scary if you're trying to lift heavy. I can't seem to do it at all anymore just doing squats without any weights causes me to not be able to do any more because I'll get too light-headed and be sick for hours after. now it seems like I literally avoid everything and I want to live again. I've had this issue since I was a child(fainting w\ cold sweats) but the symptoms have came and gone throughout my life but now they're more pronounced and pretty consistent (I'm 37)
Is it normal for a pots patient to be sick for days after doing anything strenuous? Because that's what happens to me... in one of my other comments I was saying I feel like there's more going on. Doctors and I are still trying to figure it out. BTW I do have a team of physicians I work with. I'm just looking for your general opinion. I will not use it as medical advice and I'll do my own research as well as talking to my doctor about anything you say. Thanks.
@@mandielou Thank you for your thoughtful replies, I am so glad you are working with a team of physicians. The EDS Society has great resources on their website for finding providers familiar with these specific symptoms. As you can imagine, every patient is so different but yes I have had patients where if they overdo it for the current level, they do have a flare up or days of symptoms.
I would try to find a physical therapist in addition to your team of physicians with EDS/POTS experience (even if you don't have EDS, they will understand your current symptoms) and let them help you dose your exercising. When having been out of the practice of exercise for an extended period of time it requires very specific targeted strengthening as well as very gradual dosing of exercises to meet current goals. A therapist can help with exercise dosing as you progress consistently monitoring symptoms and the rate of progression. Pilates can also be very helpful as well.
Compression stockings have helped many of my patients. That is something we try when appropriate.
*This is general information and should NOT be used as a substitute for seeking treatment from a qualified medical professional*
@@mandielou yeah it's called post extertional malaise. Avoid or reduce by keeping under a certain heart rate limit (work out for you what that is). Mine is 112, which doesn't take a lot. But don't let it stop you doing all movement as movement counters venous pooling (blood sitting in veins in legs or tummy) which is part of pots. Compression helps a bit w this esp if you put it on first thing. This video is v good re how to do movement and build up: ua-cam.com/video/T_m4f3p215g/v-deo.html
This is great short to the point view and appreciate you flagging that it is part of broader tx. Both meds and movement have been crucial in my greatly greatly improved health.
I've started doing morning ankle flexing & extend straighten knees before getting up. But I hadn't thought of doing the full set of lower body muscles and in sequence from toes to hips. Question - Is that deliberate sequence to help move pooled blood?
Will try this 👏
Yes, it helps move pooled blood
I organize it this way because it is important to get muscles moving in your whole body and this way you don’t forget an area!
I was just diagnosed with POTS and was given the chop exercise regimen but my legs are so weak due to the disability I have Charcott Marie tooth so a lot of the exercises are not feasible for me. What are some Exercises for someone who has no strength in their legs? From what I understand it leg movements are a big deal when it comes to exercises with pots because blood rushes to your legs and moving your legs gets it back up to the heart, is that correct?
Yes, that is correct
Leg exercises and specifically strengthening the calves can be very important! It is always best to get individual plans from a physical therapist. Basic standing heel raises for calves, practicing sit to stand with no arms and progressing to squats are a great place to start!
This video is hard to hear, background sound and echo are horrible!
The therapist is gorgeous
I started using a bed elevator and now I'm ready to go in the morning without the exercises
"you might feel like you want to faint"
🤔
No I don't feel like I want to faint.. I either feel like I will faint or do faint.
I know she didn't mean to say that but still...
Thanks for the video & tips.
Anyone and everyone who uploads content on UA-cam should be investing in lavalier microphones.
I can barely understand what this woman is saying because of the echo, and her distance from the mic