Thank you so much for this encouraging video - it's fantastic to hear a winning story from someone with EDS/ POTS. Congratulations and good on you for sharing. This gives me new hope!
I was just diagnosed with POTS. I have had it since I can remember. My heart rate went from 75 bpm laying down to 165 bpm standing up within a minute. I pass out almost every time I stand up or stand for too long or walk for more than a few minutes.
This is incredibly inspiring. I have a passion for nature and backpacking and I have fears that I won’t be able to do the things I want to do because of EDS or POTS. This is giving me the hope I needed to try to do the things I love and make it work.
Wow. This is so inspiring. As someone who also have POTS, and suspected connective tissue disorder, I relate with this so much. I’m currently working on strengthening my muscle and working on getting stronger again. Thank you for sharing your story!
@@prathamrballal1229 Much better than it used to be though I still go through POTS flares. Staying hydrated, liquid IV, (an electrolyte supplement) and especially strength training help me immensely.
I'm so glad I found this video! I am definitely not fit, instead I've been wanting a wheelchair for awhile because I do nothing because of this. This is encouraging!
Thanks for the video. I have just been diagnosed with POTS after getting covid twice. Just stared Ivabadine yesterday. Its been a crazy year. I hope I follow in your footsteps. Thsnks again.
Gosh, this is so relatable! First time I passed out an ER Dr asked me if I did Cocaine. I was flabbergasted!!!!!!! I do not have EDS, but I do have POTS, and so much of this video is relatable. Thank-you fo your husband did assisting :) I’m in couch potatoe mode, with lots of symptoms. Have greatly increased water, and slowly starting to increase mobility. Have totally changed the way I eat, and am consuming mostly juiced greens. Not able to eat right now. I am really sorry that you have had to go through all of this, but I want to thank you for taking the time to tape this.
Hoping you're doing better by now. By not being able to eat, are you experiencing digestive motility issues like chronic constipation or gastroparesis? Those often pop up in POTS patients. My doctor prescribed Pyridostigmine to treat both the POTS and the digestive issues.
I have just been diagnosed with pots iv gone from being quite active to now not being able to get out of bed. Many trips to the hospital and now been told I have pots but all they have done is chuck ivabradine at me and sent me on my way. I don't no where to start to getting better. I really don't want to end up in a wheel chair but at the moment I can only make it from the bed to the bathroom and I'm exhausted. Iv had a rapid hart rate for years but always been able to cope. But this passing out dissyness sickness chronic fatigue is no joke it's crippled me which has all stemmed from getting shingles 7 months ago. Please advise on my fist baby steps
Thanks so much for sharing!I find this so interesting, as your experience is so similar to mine, yet your diet efficacy is the exact opposite. I am glad the vegan diet works for you! I have actually gone the other route, eating higher meat has honestly changed my life. Just goes to show that everyone is different and you need to experiment with diet to find what works
This is pretty much my exact experience except for the gastro stuff. Super active and loved exercise and went to being bedbound. Nobody could figure it out. Haven’t been able to work in 8 months. I kept going to consultants. And finally was diagnosed with POTS only a few days ago. I am on ivabridine and am starting graded exercise therapy on Monday with a physio, hoping so much that this works! I miss exercise so much. Thanks for the video
This is great info & gives a path for those of us who need to get some real advice on how to overcome dysautonomia/POTS. Can you make a video of some of the things that you eat? Have you added salt to your diet? I'm also going plant-based and feel so much better. I've also found that heavy foods cause problems for dysautonomia. Thanks for making this video!
Glad to hear about your recovery. How are you now? I am going through POTS for the second time after covid infection. The first time it resolved after 1 year and 3 months just right after I started to exrcise.
I think I have definitely loss a ton of strength. Becoming wheelchair, then bed bound, and having the symptoms spike with movement, yup! The instinct is to stop the movement ASAP. Then suddenly it is hard to even go to the restroom. Thank-you for being an inspiration. I am not yet done with this video, and there are so many things I am taking away from this video, and many things I can relate to.
Awesome! Love to see these great results!! We zebras must be patient and try these things others are doing and having good results. I’ve found over the years the less invasive treatments take hard work, but the pay off is worth it. The hard yet simple lifestyle changes make a huge difference in how we feel, there’s no quick fixes with what we have . 😁
Such an inspiration. My doctors thought I had POTS, but I passed my tilt table test and I was diagnosed with Inappropriate sinus tachycardia. So a similar symptom or two. My cardiologist wants me to start exercising like I used to, because he says i need to start retraining my heart. I'm finally starting to, by taking walks and lifting weights. but a big reason it took so long, and why I don't do more, is I'm afraid of passing out. My symptoms have improved some with Beta blockers, but I'm still crippled by fear and I don't know how to get over it. How did you get over it? I won't even get into what the fear has done for my social life haha.
Fear is often motivated by thoughts about the future so having something to focus on in the here and now makes a big difference. In a way going vegan gave me that sense of purpose and helped me to focus on something other than myself. It's easy to get stuck in negative thought patterns about what might happen, but really what's worse than passing out is not being able to do the things you enjoy. If you're passionate about something, put your energy into doing that, and do something mindful every day - not necessarily meditating but whatever works for you. The more confident you become the more you can get back into social life - mine was also crap for ages!
I have IST and hyperadrenergic POTS, but fortunately the beta blockers make me virtually asymptomatic. The hardest part was to ignore the extra beats and skipping of the heart , scary as hell.
She treated her POTS with Ivabradine that allowed her to build her exercise to the point that the POTS ended. Exercise is how you cure POTS. But you may need Ivabradine to be able to exercise. Beta blockers are a poor man's Ivabradine. Too many side effects including lowering your blood pressure which is a disaster in POTS.
John Bedson I am also on Ivabradine and it didn’t cure my POTS. I also exercise several times a week as I’ve always been active even prior to POTS, however exercise has not made a difference in my POTS. What specific exercises help with POTS?
@@kzielinski777 If you want to discuss this at length, click my picture, go to my channel, click "Discussion" tell me all about your POTS and I'll see if I can help you. Others can do the same if they want.
I agree with your diet. I know that if I didn't eat whole food plant-based/vegan I would be much worse. Cardiologist recently thought a blockage might be causing my crazy heart rate, checked my arteries and found them clean! Most meat-eaters cannot say that. I also know that sugar, flour and caffeine make my heart rate worse and make me so tired. Meat, grease and eggs seem to sit in my stomach and make me feel generally sick. Dairy products cause me allergy- like reactions and joint pain. Problem is my diet and exercise make me less likely to be diagnosed because I'm more healthy than most, and my concentration problems, anxiety and fatigue are still there. From the beginning of the video, it sounds like you have concentration problems too. The only things I've found that seem to help a little are free-form jazz and Ativan, and they're only temporary, and benzodiazepines are really dangerous and counterproductive in the long-term.
Hoping you're doing better by now. That's true about Ativan. I built up a tolerance to it, and we kept having to raise the dose. Finally my doctor switched me to the POTS medication Clonidine to take before bed, which can also be prescribed to treat anxiety, insomnia, and ADHD. It works by signalling the body not to dump so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response.
Thanks for sharing your video! Question on your eating style- I believe you said low glycemic diet- did you eat lower fruit, or did you eat a ton of fruits and veggies still? Thank you!
I focused on low glycemic fruit and veg - so lots of berries, apples, sweet potato, greens and broccoli/cauliflower etc. If I ate high glycemic fruit/veg, like watermelon or potatoes, I would make sure to also eat something with more fibre or fat to slow down absorption (like watermelon and nuts, or potatoes plus beans and avocado). I still eat this way now, though I can be more relaxed about it without it impacting my health.
They also used to think i did coke but i cant do any drug sadley. I am sensitive just to antibiotics bleh.i cant drink and i cant walk currently either.stairs suck
Thank you for sharing.. very encouraging... Are you able to share who these doctors were - with me I've discovered best results from salt lots of water (hot especially) and eating only small amounts. I would like to take my journey forward possibly trying some of the same doctors you used. Thanking you
Hi there I'm unsure if you are reading these still but my wife has recently been having the issues related to POTs ,raised heart rate when standing, major fatigue, digestive issues and so on. We been to the docs time and time again and the ER and Hospital and each time they say everything is fine so she is getting worried. Was this something that happened to you and how exactly did you know you had POTs? Also is there anything in particular you would recommend her to do to start making it better if that is what she has?
That sounds so frustrating! Yes I did have similar issues - it took 2 years to get properly diagnosed with a tilt-table test. PoTS 'attacks' will sometimes resolve themselves with rest, so by the time you go to the hospital she might not be experiencing acute symptoms. I got in contact with a cardiologist who was a specialist in PoTS prior to getting my diagnosis. I would recommending finding an expert in PoTS who you can explain the symptoms to and get more detailed advice. Fortunately in the UK I was able to do this on the NHS with the support of my General Practitioner. In terms of treatment, drinking large amounts of fluids, slowly increasing exercise and eating well are all good places to start. Ivabradine was the medication that helped me the most, but it is not widely used.
Could you make a video going over the more s;edifices of your diet of what you do? Going vegan sounds so hard to manage when you don’t have energy to do much with food in the first place and can’t seem to get enough calories
@@enterflora The how you did exercise and how become fit. What treatment you have taken can you please tell. Here in india no one treats this condition. They given arthritis steroids medicine which made my condition worse. I want to recover from this pain
Hey there, I wondered if you had any advice. I believe I'm suffering POTS and have been to the doctors on numerous occasions. My Doctor refuses to do anything for me and refer me to a cardiologist. I had to ask him for a blood test and he said he didn't think there would be anything wrong with me as I looked healthy and most people my age can feel lightheaded upon standing and present the other symptoms I have. I just don't know what to do anymore. I don't feel like I can go back to my doctors because I feel embarrassed, I'm made to feel like I'm a nuisance and a hypochondriac. I just wondered if you had any advice on how I can go about getting a diagnosis? Thank you and your videos are great by the way! :)
That's terrible but not unheard of - very few doctors know anything about POTS. I would get a second opinion from another GP. Also if you are in the UK the charity STARS UK has a lot of helpful info about POTS specialist doctors and how to get diagnosed: www.heartrhythmalliance.org/stars/uk
Hey, thank you so much for your reply - I really appreciate it. I was thinking about changing my GP surgery but I will definitely try and get a second opinion from another doctor. I'll be sure to check out the link to that website, it sounds really good. It sounds like you've been through a pretty tough time with POTS but it's good to know you are doing much better and are learning to cope with it in different ways and are giving hope to others who also suffer from it.
GPs are starting to hear about it in training, slowly! The key is to ask them/ practice nurse if they can do a resting (lying) heart rate & then standing heart rate. An Incr of > 30bpm or >120 when you stand can be a sign of PoTs. Doctors are trained to look at change in blood pressure on standing, but not so much heart rate. Taking printed info from stars.org and or PoTs UK can help. You could consider dropping it in in advance for them. Switching GP can be an option or try seeing a registrar in the practice as they may be more open to it or even know of it! Good luck :-)
I still no longer have POTS. I have pain and fatigue from EDS but it is more manageable, around 1 dislocation/month. I've been vegan for 6 years and training to row a half-marathon in February. I would like to do an upate video but struggling to find the time while working full-time while studying for post-grad diploma.
@@enterflora thanks for the health update. Do you think vegan is enough to when suffering from severe cfs, eds etc? I'm trying to get better but not having much luck. I'm glad you are managing wlel enough and working full time. Long may it continue x
Did you ever go back to finish your masters? I want to get a masters in social work but I'm afraid I won't be able to complete it. Also what do you do for a job? I'm in a place right now in which I cannot work and I'm afraid when it comes to supporting myself in the future.
Also did you have allot of salt in your diet? I feel I can not even function if I haven't had salt and water. My blood pressure stays low even while sitting .
Yes - I still add salt to most of my meals and my blood pressure is normal. I also start the day with a litre of water. It helps a lot with dizziness and brain fog!
I mostly eat whole plant foods - rice, beans, greens, fruit, veggies ... and processed things like vegan protein bars I have occasionally. For exercise I do a mix of strength training and boxing, and run or hike once a week.
Everyone is different. I was able to stop using a wheelchair after 2 months, and it took 2 years to be 90% symptom-free, and a further year to no longer have POTS symptoms. I took ivabradine for 12 months during that time.
I was diagnosed with pots a few months ago, and am also on ivabradine. Im dying to get off of this medication. How did you know you were ready to not use it anymore? did your heart rate stop going out of control?
I gradually reduced the dose over time, and kept a record of how it affected my heart rate. I used to take half a tablet, then a quarter etc. I was exercising most days so that helped to condition my body again.
Ive been peddling a recumbent bike, and yoga, I'm curious what your exercise routine was. How far into your routine did you notice a change. Im on a full 5mg in the morning and half (2.5) in the evening and I would love to be off of it all together. How did you know when to cut the dose?
In the beginning I mostly did walking every day - something that gets your body used to being upright is best. Upright cycling or walking help to build stronger calf muscles, and they really help with circulation. I started short and built it up, and included hills and stairs if possible. I also did pilates to build core strength. I knew to reduce the dose when my heart rate began dropping during exercise. You can use an app on your phone to check it. Ivabradine has a very short half-life so if you do decide to try reducing it, you can easily increase it again.
No, though having lost a friend to cervical cancer and knowing several women who have required treatment, I would do if that were an option for me (I am over the vaccine age in the UK).
Were you screened for possibly having Gillian Beret syndrome in addition to....? It can be triggered by something as benign as a cold or mono. Also what type of EDS were you diagnosed with? Thank you for posting your story :) Many doctors do not know about nor have studied these conditions and many of us as patients have been treated quite badly / have been misdiagnosed / accused of having a psychological issue due to that lack of knowledge for legitament conditions. Keep putting the word out there:)
Thanks :) I didn't have specific symptoms of GBS or another autoimmune disease so that was soon ruled out. I was diagnosed with type III (hypermobility)
Very interesting. I have found I can do less and less, and my family doctor is having me start writing down my symptoms and heart rates to see if there's a pattern of anxiety or none at all. Then, we may be doing a 24-48 hr monitor test to see how it goes in a typical day doing normal things. It'ss funny that you say you can't tolerate meat and only veggies. I'm exactly the opposite. I can tolerate white bread (so long as it's yeast-based, not baking powder based) and low-fat meats. So, chicken breast, turkey breast, lean/organic hamburger, etc. Any time I eat a veggie more than once in a while, I end up in pain and losing more water than I'm getting in. I end up feeling dehydrated while on water, so I've gone to Ginger Ale. I do worry about the sugar content, and the comment you made about the low-glycemic diet sounds really interesting. I might have to look into that. I, myself, stick to a low FODMAP diet which helps. I stopped eating garlic and onion and found I was less gassy and less bloated. But, it does make for a very limited diet. I'm hoping I can get properly diagnosed soon so I can treat the other things that keep me from processing food properly so I can eat like a normal person. Good for you for taking charge of your health! It's difficult when every doctor tells you something different or you're called a drug addict or drug seeker when you just need medical attention. I hope your health stays strong, and I hope you have a great life. :)
I would love your ideas for diet and exercise. I also have eds ...im on cymbalta and i can walk better however i am tired quite a lot and it has affected my job. When i started therapy i was dislocating. So you recommend starting with pilates?
I started with pilates as my physiotherapist recommended it to build a strong core which helps with holding our joints together. Blogilates on youtube has lots of great pilates workouts. Maybe avoid anything too fast-paced to start with until you are more used to the movements.
I have not had any issues with deficiencies including iron and have never needed iron supplements, but women are more prone to anemia so it is something to keep an eye on. You can get adequate non-heme iron on a vegan diet but for those prone to deficiency you might need to discuss supplementation with your doctor. It is not advisable to take iron supplements without medical supervision as they can be harmful in high doses. The only supplement you HAVE to take as a vegan is b12. If you live in a cold country like I do, it's also a good idea to take vitamin D (regardless of your diet).
@Jennifer Timmons I have pots, Eds, and it all started with rock bottom ferritin of 8 , a tad bit lower than normal hemoglobin 11 ( normal starts at 12.5 for my lab) and a d-dimer clotting factor of 2.5 ( normal is
I have POTS & EDS & veganism has changed my life completely as well! I truly feel I’m finally on the road to healing after living this nightmare for 8+ years 🖤💙
@@TheBushRanger. fully raw vegan since February & 52 days into juice fast. Mostly healed especially POTS symptoms. Lowered my hr by 100bpm over the last couple years.
Eating a vegan diet for 10 years made my health worse unfortunately and lead to severe vitamin deficiencies and iron deficiency. If you eat a vegan diet you need to make sure you’re getting everything your body needs since the soil is so depleted especially in the U.S. that you really don’t get enough nutrients from plant materials alone these days, and that’s also a lot of extra work for a sick person to stay on top of. I only eat humanely treated (humane certified) animal products now (I definitely don’t support factory farming aka animal torture)and even though it was difficult for me emotionally to start eating animal products again, my health has improved so much.
I am still vegan and doing well, but supplement where needed. I live in the UK so take vegan d3, b12, and algae omega 3. Fortunately I am not prone to iron deficiency so have not had issues with this. Anemia is very common for women (up to 1 in 3) regardless of dietary intake, some vegans will supplement with iron or take a multi-v with iron, e.g. unnaturalvegan has some videos about this. I hope your health continues to improve
I have Pots and am really struggling. I’m under Dr Gall also but as of yet have not tried Ivabradine but having watched your videos am going to ask about trying it. Do you know any support groups or Potsies in the Bromley area as it would be nice to speak to someone and share experiences? It’s nice to see something positive hope you’re still doing well
I was taking ivabradine for around a year which worked really well for me, but I have not taken any medication since then (2015) other than a b12 supplement.
This was so inspiring! Thank you so much for sharing, I think you're going to help a lot of people ❤ I have POTS too and make videos about my health journey if you want to check it out 😊 Although I'm pretty much at the beginning of my journey (diagnosed in 2017) so still have a long way to go! 💪🏽
I have both POTS and EDS! I love to see people spreading awareness!
Wow you are so strong. And I love how strong you both are and your husband is supportive
Thank you so much for this encouraging video - it's fantastic to hear a winning story from someone with EDS/ POTS. Congratulations and good on you for sharing. This gives me new hope!
I was just diagnosed with POTS. I have had it since I can remember. My heart rate went from 75 bpm laying down to 165 bpm standing up within a minute. I pass out almost every time I stand up or stand for too long or walk for more than a few minutes.
How is ur pots now
How are you today??
This is incredibly inspiring. I have a passion for nature and backpacking and I have fears that I won’t be able to do the things I want to do because of EDS or POTS. This is giving me the hope I needed to try to do the things I love and make it work.
Wow. This is so inspiring. As someone who also have POTS, and suspected connective tissue disorder, I relate with this so much. I’m currently working on strengthening my muscle and working on getting stronger again. Thank you for sharing your story!
How is ur pots
@@prathamrballal1229 Much better than it used to be though I still go through POTS flares. Staying hydrated, liquid IV, (an electrolyte supplement) and especially strength training help me immensely.
I'm so glad I found this video! I am definitely not fit, instead I've been wanting a wheelchair for awhile because I do nothing because of this. This is encouraging!
Thanks for the video. I have just been diagnosed with POTS after getting covid twice. Just stared Ivabadine yesterday. Its been a crazy year. I hope I follow in your footsteps. Thsnks again.
This is the best video I’ve found, it’s so helpful, thank you!
Gosh, this is so relatable! First time I passed out an ER Dr asked me if I did Cocaine. I was flabbergasted!!!!!!! I do not have EDS, but I do have POTS, and so much of this video is relatable.
Thank-you fo your husband did assisting :)
I’m in couch potatoe mode, with lots of symptoms. Have greatly increased water, and slowly starting to increase mobility. Have totally changed the way I eat, and am consuming mostly juiced greens. Not able to eat right now.
I am really sorry that you have had to go through all of this, but I want to thank you for taking the time to tape this.
Hoping you're doing better by now. By not being able to eat, are you experiencing digestive motility issues like chronic constipation or gastroparesis? Those often pop up in POTS patients. My doctor prescribed Pyridostigmine to treat both the POTS and the digestive issues.
I have both EDS and POTS as well
I have just been diagnosed with pots iv gone from being quite active to now not being able to get out of bed. Many trips to the hospital and now been told I have pots but all they have done is chuck ivabradine at me and sent me on my way. I don't no where to start to getting better. I really don't want to end up in a wheel chair but at the moment I can only make it from the bed to the bathroom and I'm exhausted. Iv had a rapid hart rate for years but always been able to cope. But this passing out dissyness sickness chronic fatigue is no joke it's crippled me which has all stemmed from getting shingles 7 months ago. Please advise on my fist baby steps
Your story is so inspiring! Please make a followup video! Thanks so much
Thanks so much for sharing!I find this so interesting, as your experience is so similar to mine, yet your diet efficacy is the exact opposite. I am glad the vegan diet works for you! I have actually gone the other route, eating higher meat has honestly changed my life. Just goes to show that everyone is different and you need to experiment with diet to find what works
This is pretty much my exact experience except for the gastro stuff. Super active and loved exercise and went to being bedbound. Nobody could figure it out. Haven’t been able to work in 8 months. I kept going to consultants. And finally was diagnosed with POTS only a few days ago. I am on ivabridine and am starting graded exercise therapy on Monday with a physio, hoping so much that this works! I miss exercise so much. Thanks for the video
Hey. Do u have Eds also?
This is great info & gives a path for those of us who need to get some real advice on how to overcome dysautonomia/POTS. Can you make a video of some of the things that you eat? Have you added salt to your diet? I'm also going plant-based and feel so much better. I've also found that heavy foods cause problems for dysautonomia. Thanks for making this video!
I'm scared about stroke and fainting with pots :(
Do vedio on how r u now
Glad to hear about your recovery. How are you now? I am going through POTS for the second time after covid infection. The first time it resolved after 1 year and 3 months just right after I started to exrcise.
How are you now?
Still doing well. EDS remains an issue at times but I've had no POTS symptoms for several years. Still vegan
@@enterflora wow that's so awesome at no pots. I will start on this regime! I already have. Thank you so much for sharing
I think I have definitely loss a ton of strength. Becoming wheelchair, then bed bound, and having the symptoms spike with movement, yup! The instinct is to stop the movement ASAP. Then suddenly it is hard to even go to the restroom.
Thank-you for being an inspiration. I am not yet done with this video, and there are so many things I am taking away from this video, and many things I can relate to.
Awesome! Love to see these great results!! We zebras must be patient and try these things others are doing and having good results. I’ve found over the years the less invasive treatments take hard work, but the pay off is worth it. The hard yet simple lifestyle changes make a huge difference in how we feel, there’s no quick fixes with what we have . 😁
Thanks for video. Helpful and positive ..... great attitude, thanks for sharing and caring.
Ty for this .its frustrating cuz all of us are so different even tho we share same illnesses. Im sorry u went thru that
Such an inspiration. My doctors thought I had POTS, but I passed my tilt table test and I was diagnosed with Inappropriate sinus tachycardia. So a similar symptom or two. My cardiologist wants me to start exercising like I used to, because he says i need to start retraining my heart. I'm finally starting to, by taking walks and lifting weights. but a big reason it took so long, and why I don't do more, is I'm afraid of passing out. My symptoms have improved some with Beta blockers, but I'm still crippled by fear and I don't know how to get over it. How did you get over it? I won't even get into what the fear has done for my social life haha.
Fear is often motivated by thoughts about the future so having something to focus on in the here and now makes a big difference. In a way going vegan gave me that sense of purpose and helped me to focus on something other than myself. It's easy to get stuck in negative thought patterns about what might happen, but really what's worse than passing out is not being able to do the things you enjoy. If you're passionate about something, put your energy into doing that, and do something mindful every day - not necessarily meditating but whatever works for you. The more confident you become the more you can get back into social life - mine was also crap for ages!
I have IST and hyperadrenergic POTS, but fortunately the beta blockers make me virtually asymptomatic. The hardest part was to ignore the extra beats and skipping of the heart , scary as hell.
Finally wt was the result
A low gl.. What? Sorry I'd love more info
HTH :) : www.glycemicindex.com/
Please continue making videos on how your treated POTS!
She treated her POTS with Ivabradine that allowed her to build her exercise to the point that the POTS ended. Exercise is how you cure POTS. But you may need Ivabradine to be able to exercise. Beta blockers are a poor man's Ivabradine. Too many side effects including lowering your blood pressure which is a disaster in POTS.
John Bedson I am also on Ivabradine and it didn’t cure my POTS. I also exercise several times a week as I’ve always been active even prior to POTS, however exercise has not made a difference in my POTS. What specific exercises help with POTS?
@@kzielinski777 What dose of Ivabradine are you on? With my son it did not kick in until 7.5mg twice a day. Below that it makes him worse.
John Bedson I take 7.5mg twice a day, has not made a huge difference.
@@kzielinski777 If you want to discuss this at length, click my picture, go to my channel, click "Discussion" tell me all about your POTS and I'll see if I can help you. Others can do the same if they want.
Me too at healthy and now hit with this. Did it give you anxiety? How did you deal with it and in your marriage?
How are things going for you now?
All going well. Currently 9mths pregnant and only a few EDS-related blips so far. POTS has not returned.
@@enterflora congratulations! I've just started ivabradine today (without a trial) hopefully, all things will be OK. 🤍
@@colt24 I hope it works for you :)
I agree with your diet. I know that if I didn't eat whole food plant-based/vegan I would be much worse. Cardiologist recently thought a blockage might be causing my crazy heart rate, checked my arteries and found them clean! Most meat-eaters cannot say that. I also know that sugar, flour and caffeine make my heart rate worse and make me so tired. Meat, grease and eggs seem to sit in my stomach and make me feel generally sick. Dairy products cause me allergy- like reactions and joint pain. Problem is my diet and exercise make me less likely to be diagnosed because I'm more healthy than most, and my concentration problems, anxiety and fatigue are still there. From the beginning of the video, it sounds like you have concentration problems too. The only things I've found that seem to help a little are free-form jazz and Ativan, and they're only temporary, and benzodiazepines are really dangerous and counterproductive in the long-term.
Hoping you're doing better by now. That's true about Ativan. I built up a tolerance to it, and we kept having to raise the dose. Finally my doctor switched me to the POTS medication Clonidine to take before bed, which can also be prescribed to treat anxiety, insomnia, and ADHD. It works by signalling the body not to dump so much norepinephrine and adrenaline into circulation, which in turn calms the "fight or flight" panic and anxiety response.
Thanks for sharing your video! Question on your eating style- I believe you said low glycemic diet- did you eat lower fruit, or did you eat a ton of fruits and veggies still? Thank you!
I focused on low glycemic fruit and veg - so lots of berries, apples, sweet potato, greens and broccoli/cauliflower etc.
If I ate high glycemic fruit/veg, like watermelon or potatoes, I would make sure to also eat something with more fibre or fat to slow down absorption (like watermelon and nuts, or potatoes plus beans and avocado). I still eat this way now, though I can be more relaxed about it without it impacting my health.
Have you been tested for alpha gal syndrome?
They also used to think i did coke but i cant do any drug sadley. I am sensitive just to antibiotics bleh.i cant drink and i cant walk currently either.stairs suck
Have they screened you for Mast Cell Activation Syndrome (MCAS)? Hoping you're doing better by now.
I agree for vegan and low glycemic diet. It helps a lot for EDS.
Thank you for sharing.. very encouraging... Are you able to share who these doctors were - with me I've discovered best results from salt lots of water (hot especially) and eating only small amounts. I would like to take my journey forward possibly trying some of the same doctors you used. Thanking you
Hi there I'm unsure if you are reading these still but my wife has recently been having the issues related to POTs ,raised heart rate when standing, major fatigue, digestive issues and so on. We been to the docs time and time again and the ER and Hospital and each time they say everything is fine so she is getting worried. Was this something that happened to you and how exactly did you know you had POTs? Also is there anything in particular you would recommend her to do to start making it better if that is what she has?
That sounds so frustrating! Yes I did have similar issues - it took 2 years to get properly diagnosed with a tilt-table test. PoTS 'attacks' will sometimes resolve themselves with rest, so by the time you go to the hospital she might not be experiencing acute symptoms. I got in contact with a cardiologist who was a specialist in PoTS prior to getting my diagnosis. I would recommending finding an expert in PoTS who you can explain the symptoms to and get more detailed advice. Fortunately in the UK I was able to do this on the NHS with the support of my General Practitioner. In terms of treatment, drinking large amounts of fluids, slowly increasing exercise and eating well are all good places to start. Ivabradine was the medication that helped me the most, but it is not widely used.
Same here. Get a tilt table test. ER is useless. Find a Doctor who can do a tilt table test. Usually it's a neurologist or a cardiologist.
Wow that’s amazing how did you get off it
I slowly started to reduce after a year once my heart rate was more steady, on my doctor's advice.
Could you make a video going over the more s;edifices of your diet of what you do? Going vegan sounds so hard to manage when you don’t have energy to do much with food in the first place and can’t seem to get enough calories
What about your joints still they are hypermobility or instability. All my joints are instable is this is called hypermobility
With Ehlers Danlos syndrome, joints are hypermobile and unstable which causes dislocations more easily
@@enterflora The how you did exercise and how become fit. What treatment you have taken can you please tell. Here in india no one treats this condition. They given arthritis steroids medicine which made my condition worse. I want to recover from this pain
@@IamJan-2024 I'm sad to hear that. I started with pilates and physiotherapy. Hopefully you can find a good physiotherapist who can help you
@@enterflora thanks for your reply. Any medicine or supplements .or any peptides have you been.
Hey there, I wondered if you had any advice. I believe I'm suffering POTS and have been to the doctors on numerous occasions. My Doctor refuses to do anything for me and refer me to a cardiologist. I had to ask him for a blood test and he said he didn't think there would be anything wrong with me as I looked healthy and most people my age can feel lightheaded upon standing and present the other symptoms I have. I just don't know what to do anymore. I don't feel like I can go back to my doctors because I feel embarrassed, I'm made to feel like I'm a nuisance and a hypochondriac. I just wondered if you had any advice on how I can go about getting a diagnosis? Thank you and your videos are great by the way! :)
That's terrible but not unheard of - very few doctors know anything about POTS. I would get a second opinion from another GP. Also if you are in the UK the charity STARS UK has a lot of helpful info about POTS specialist doctors and how to get diagnosed: www.heartrhythmalliance.org/stars/uk
Hey, thank you so much for your reply - I really appreciate it. I was thinking about changing my GP surgery but I will definitely try and get a second opinion from another doctor. I'll be sure to check out the link to that website, it sounds really good. It sounds like you've been through a pretty tough time with POTS but it's good to know you are doing much better and are learning to cope with it in different ways and are giving hope to others who also suffer from it.
GPs are starting to hear about it in training, slowly! The key is to ask them/ practice nurse if they can do a resting (lying) heart rate & then standing heart rate. An Incr of > 30bpm or >120 when you stand can be a sign of PoTs. Doctors are trained to look at change in blood pressure on standing, but not so much heart rate. Taking printed info from stars.org and or PoTs UK can help. You could consider dropping it in in advance for them. Switching GP can be an option or try seeing a registrar in the practice as they may be more open to it or even know of it! Good luck :-)
Looking forward to more videos! :)
Vitamin D and a miracle from god cured my pots.
Can i ask how you received your miracle from God?
What dosage of vitamin D?
How is ur pots now
@@ellesam3348 50,000 IU once a week for 4 months
@@prathamrballal1229 nonexistent
health update?
I still no longer have POTS. I have pain and fatigue from EDS but it is more manageable, around 1 dislocation/month. I've been vegan for 6 years and training to row a half-marathon in February. I would like to do an upate video but struggling to find the time while working full-time while studying for post-grad diploma.
@@enterflora thanks for the health update. Do you think vegan is enough to when suffering from severe cfs, eds etc? I'm trying to get better but not having much luck. I'm glad you are managing wlel enough and working full time. Long may it continue x
Did you ever go back to finish your masters? I want to get a masters in social work but I'm afraid I won't be able to complete it. Also what do you do for a job? I'm in a place right now in which I cannot work and I'm afraid when it comes to supporting myself in the future.
Yes I did! Universities are often really good at helping those with disabilities. Go for it if it is what you want to do.
Also did you have allot of salt in your diet? I feel I can not even function if I haven't had salt and water. My blood pressure stays low even while sitting .
Yes - I still add salt to most of my meals and my blood pressure is normal. I also start the day with a litre of water. It helps a lot with dizziness and brain fog!
Thankyou..you both are lovely, 🌷🙏🏻💕
What foods do you eat and exercises do you do
I mostly eat whole plant foods - rice, beans, greens, fruit, veggies ... and processed things like vegan protein bars I have occasionally.
For exercise I do a mix of strength training and boxing, and run or hike once a week.
Everyone is different. I was able to stop using a wheelchair after 2 months, and it took 2 years to be 90% symptom-free, and a further year to no longer have POTS symptoms. I took ivabradine for 12 months during that time.
I was diagnosed with pots a few months ago, and am also on ivabradine. Im dying to get off of this medication. How did you know you were ready to not use it anymore? did your heart rate stop going out of control?
I gradually reduced the dose over time, and kept a record of how it affected my heart rate. I used to take half a tablet, then a quarter etc. I was exercising most days so that helped to condition my body again.
Ive been peddling a recumbent bike, and yoga, I'm curious what your exercise routine was. How far into your routine did you notice a change. Im on a full 5mg in the morning and half (2.5) in the evening and I would love to be off of it all together. How did you know when to cut the dose?
In the beginning I mostly did walking every day - something that gets your body used to being upright is best. Upright cycling or walking help to build stronger calf muscles, and they really help with circulation. I started short and built it up, and included hills and stairs if possible. I also did pilates to build core strength.
I knew to reduce the dose when my heart rate began dropping during exercise. You can use an app on your phone to check it. Ivabradine has a very short half-life so if you do decide to try reducing it, you can easily increase it again.
Thanks so much!
Have you tried florineff ?? I've been on it for 10 months now and Thriving ! Couldn't imagine my life without it
I love the way your boyfriend looks at you.
He barley let her talk. Kept interrupting her
I'm so worried about being in a wheel chair :(
Did you feel like a burden to those around you?
Hey, how are you doing today?
After one year, is ur pots worse or better
Did you get a Gardisil / HPV vaccine?
No, though having lost a friend to cervical cancer and knowing several women who have required treatment, I would do if that were an option for me (I am over the vaccine age in the UK).
@@enterflora not sure if they changed the age in your country, but they raised the age of the vaccine to 46 in the US.
@@enterflora that vaccine is very dangerous. That's why she was asking.
Were you screened for possibly having Gillian Beret syndrome in addition to....? It can be triggered by something as benign as a cold or mono. Also what type of EDS were you diagnosed with? Thank you for posting your story :) Many doctors do not know about nor have studied these conditions and many of us as patients have been treated quite badly / have been misdiagnosed / accused of having a psychological issue due to that lack of knowledge for legitament conditions. Keep putting the word out there:)
Thanks :) I didn't have specific symptoms of GBS or another autoimmune disease so that was soon ruled out. I was diagnosed with type III (hypermobility)
Very interesting. I have found I can do less and less, and my family doctor is having me start writing down my symptoms and heart rates to see if there's a pattern of anxiety or none at all. Then, we may be doing a 24-48 hr monitor test to see how it goes in a typical day doing normal things.
It'ss funny that you say you can't tolerate meat and only veggies. I'm exactly the opposite. I can tolerate white bread (so long as it's yeast-based, not baking powder based) and low-fat meats. So, chicken breast, turkey breast, lean/organic hamburger, etc. Any time I eat a veggie more than once in a while, I end up in pain and losing more water than I'm getting in. I end up feeling dehydrated while on water, so I've gone to Ginger Ale. I do worry about the sugar content, and the comment you made about the low-glycemic diet sounds really interesting. I might have to look into that. I, myself, stick to a low FODMAP diet which helps. I stopped eating garlic and onion and found I was less gassy and less bloated. But, it does make for a very limited diet. I'm hoping I can get properly diagnosed soon so I can treat the other things that keep me from processing food properly so I can eat like a normal person.
Good for you for taking charge of your health! It's difficult when every doctor tells you something different or you're called a drug addict or drug seeker when you just need medical attention. I hope your health stays strong, and I hope you have a great life. :)
I would love your ideas for diet and exercise. I also have eds ...im on cymbalta and i can walk better however i am tired quite a lot and it has affected my job. When i started therapy i was dislocating. So you recommend starting with pilates?
I started with pilates as my physiotherapist recommended it to build a strong core which helps with holding our joints together. Blogilates on youtube has lots of great pilates workouts. Maybe avoid anything too fast-paced to start with until you are more used to the movements.
Thank you..you are amazing!
I know this video is from 3 years ago but I was wondering if you had to take iron supplements when you went on a vegan diet?
I have not had any issues with deficiencies including iron and have never needed iron supplements, but women are more prone to anemia so it is something to keep an eye on. You can get adequate non-heme iron on a vegan diet but for those prone to deficiency you might need to discuss supplementation with your doctor. It is not advisable to take iron supplements without medical supervision as they can be harmful in high doses.
The only supplement you HAVE to take as a vegan is b12. If you live in a cold country like I do, it's also a good idea to take vitamin D (regardless of your diet).
@Jennifer Timmons I have pots, Eds, and it all started with rock bottom ferritin of 8 , a tad bit lower than normal hemoglobin 11 ( normal starts at 12.5 for my lab) and a d-dimer clotting factor of 2.5 ( normal is
Are you are going more to do youtube
I like the way aussies say "body"
I have POTS & EDS & veganism has changed my life completely as well! I truly feel I’m finally on the road to healing after living this nightmare for 8+ years 🖤💙
Are you fine now?
@@TheBushRanger. fully raw vegan since February & 52 days into juice fast. Mostly healed especially POTS symptoms. Lowered my hr by 100bpm over the last couple years.
Also pain free, on no medications, now no supplements, & no longer need iv fluids twice a week. No longer need compression gear or shower chair etc
@@mandybrooke did u take beta blocker in ur past
@@rameshlumb4003 yes
Eating a vegan diet for 10 years made my health worse unfortunately and lead to severe vitamin deficiencies and iron deficiency. If you eat a vegan diet you need to make sure you’re getting everything your body needs since the soil is so depleted especially in the U.S. that you really don’t get enough nutrients from plant materials alone these days, and that’s also a lot of extra work for a sick person to stay on top of. I only eat humanely treated (humane certified) animal products now (I definitely don’t support factory farming aka animal torture)and even though it was difficult for me emotionally to start eating animal products again, my health has improved so much.
I am still vegan and doing well, but supplement where needed. I live in the UK so take vegan d3, b12, and algae omega 3. Fortunately I am not prone to iron deficiency so have not had issues with this.
Anemia is very common for women (up to 1 in 3) regardless of dietary intake, some vegans will supplement with iron or take a multi-v with iron, e.g. unnaturalvegan has some videos about this. I hope your health continues to improve
I have Pots and am really struggling. I’m under Dr Gall also but as of yet have not tried Ivabradine but having watched your videos am going to ask about trying it. Do you know any support groups or Potsies in the Bromley area as it would be nice to speak to someone and share experiences? It’s nice to see something positive hope you’re still doing well
I have hyperadrenergic pots.....anyone else?
What's your symptoms
What medication do you take
I was taking ivabradine for around a year which worked really well for me, but I have not taken any medication since then (2015) other than a b12 supplement.
This was so inspiring! Thank you so much for sharing, I think you're going to help a lot of people ❤ I have POTS too and make videos about my health journey if you want to check it out 😊 Although I'm pretty much at the beginning of my journey (diagnosed in 2017) so still have a long way to go! 💪🏽
thank you!
Olive oil is very good for you❤️
This BF is as sweet as nectar...
Exactly when I went vegan I started feeling a lot better I was not diagnosed with pots until 8 years later
Husband in a baphomet shirt, eh?
tshirt brand is anticarnist, you can find them on etsy
@@enterflora are yall Satanists?
That's the only thing you took fom this video? You are very judging.
@@polyforge3d Why would you assume that was the only thing I got from the vid? Ditto the sentiment
@@MammaMo09 You are right, sorry for that. :)