Explore further with my meditation and reflection journal prompts, available in the free POTS Resource Hub. Register once at learn.ivintila.com/pots-resource-hub/order/ to access these resources and more accompanying each video for free.
Thanks for sharing more of your story with POTS. Perhaps a controversial idea but I found letting go of the expectation that some doctor or treatment was going to "cure" me the most liberating. Giving my body permission to be different than others, letting go of the need to be "normal", and taking back the power I'd given to medical professionals to help me culminated in my biggest breakthroughs. The healing you mentioned could only come when I found acceptance for where I was. In my journey so far I've found that tools are necessary and help a great deal but mindset is also powerful! :)
So eloquently stated. Thank you for sharing, Amanda. Letting go and accepting is not the same as giving up. But in a way, only through accepting where we are and working with the current limitations can we actually move forward. It sounds so counterintuitive at first though!
Wow this is interesting! I too was diagnosed with Gastroparesis late in high school. I had some acid reflux/stomach/ibs problems earlier as a kid. Gastroparesis improved with low dose Nortriptyline and a regiment of antibiotics. 12 years later alarming onset of symptoms similar to yours including cardiac and brain fog but with the inclusion of severe headache. It’s been 11 years since that sudden onset but I have been learning to manage after being diagnosed with POTs. What’s more interesting is I even have the left eye ptosis that you exhibit. The Gastroparesis and ptosis I think are uniquely important shared symptoms among POTs patients that may mean something to the correct Doctor. We just need to spread the word to our health care providers until someone connects these dots. I.E some impingement of a nerve (Horner’s syndrome) etc. I believe that if we patients band together and share information we can advance POTs treatments and I’m really hopeful of discovering the root cause(s). If we know the cause, we can find the “cure” and be healed.
I’ve been having all those symptoms for a long time now. Just recently I ended up at the ER multiple times due to high heart rate, they couldn’t find anything. Now, my doctor is putting me on a heart monitor and she’s telling me that it’s just me having high anxiety and depression but I know there’s more than that. My body hasn’t been normal, I feel so empty. I can’t even function, I can’t even drive or sit in the car without feeling like I’m going to past out. I will definitely tell my doctor to test for POTS. Thank you for sharing your story.
Your story sounds very similar to mine. I kept ending up at the ER for the high heart rate, and no one was ever able to give me an answer. Kudos to you for trusting your body and persevering. I hope you get some answers.
In the same situation since March 2020. Told exactly same thing. 9 grand and 3er visits later trying to tackle this myself. I can say I have improved slightly.
I immediately assumed my POTS was due to neck trauma (I have many many). I had zero POTS issues in childhood / teen years. I was told there was no connection by my neurologist but now I’m quite sure he is wrong. So I’m considering the cause is cervical instability, an issue with my c1/c2 vertebrae. I already know from an X-ray it is rotated and facets are tilted. I am considering Prolotherapy. Opinions? Anyone? I was raised meditating so please no one tell me it’s repressed emotions. Sorry but no.
Guess what - I had gut dysbiosis from parasites and h pylori. This brought on a year of constant problems. Including major diet shifting. I started treatment for those but then pots went off from having COVID while on my treatment. I had to completely stop my treatment and ended up in ER because of the panic that occurred from pots (I fainted from nothing, and then the next day I took a hot bath and it triggered a major tremor attack). So your words are making so much sense to me. Thank you so much 🥺 I used to be a fitness trainer and enthusiast but then I had 2 c section babies and couldn’t exercise or get out of the home much. Now I realize why I always felt a healthy lifestyle was important to me. This is making me realize how much keeping myself at a certain base is necessary. (Water, steps etc). I’m aware people will judge me for what’s going on but I don’t care haha I either care too much about opinions or get healthier. I can’t have both. Now I think I had some kind of MCAS reaction during my tremor attack.
Hi, it's a mix of things. You can see more in depth here: mailchi.mp/2c90c8b32bfb/potssecrets ruclips.net/video/d-QV0JNff68/видео.html&ab_channel=IoanaVintila
I am so glad I came across your videos. I have some hope of getting out of this. I have had type 1 diabetes for 36 years now and started experiencing pots symptoms when I was 13 and it got much worse over time until now I can’t keep food down and today I can’t even sit up. I’m so depressed I have 2 kids and just went through a brutal divorce. I just want to heal and be able to work and maybe enjoy 1 activity w my kids a day and maybe one day grocery shop again.
You're not alone in this fight. The majority of POTS people I meet have had some kind of symptoms since they were quite young and various triggers along the way made it significantly worse. But even then it doesn't mean that it continues to be downhill from there... I've seen plenty of uphill as well. Even if they were struggling from early on. Sending you soft hugs.
Mhm, that's a really good question. I tended to focus mostly on POTS as that was my first diagnosis and it's sometimes hard to figure out what causes what. Interestingly enough, the MCAS symptoms (redness and flushing, sensitivity to wine and some other foods, etc.) also faded away with the POTS symptoms. They seem to be quite intertwined. I think with MCAS what helped a lot was dietary changes and working with the vagus nerve. There has also been a lot less joint and muscle pain (perhaps EDS symptom or not). What helps a lot with that is moving. The more I move, the better I feel. But that wasn't the case before. I would feel worse when moving (fatigue, other pain, etc.). So it's really interesting how the body changes when it's starting to heal.
My Hope is that I can learn how to meditate the way dr. Joe dispenza does and my body will switch. He talks about it happening all the time with people that go to his workshops. In the meantime I'm reading his his books and trying to manage symptoms and make lifestyle changes. I found a great clinic that specializes in pots about 40 minutes from where I live so that's an answer to prayer. This has been very difficult for me cuz I'm an athlete and I have all these things trying to slow me down with my occupation and my fitness. Nothing used to make me tired.
THIS VIDEO IS ANAZING!! Btw I have a quick question lately I’ve been just checking my pulse non stop; been going thru a health anxiety phase tbh. I just want to ask a quick question, so when I’m sitting I notice my average heart rate is around 69-72 but then when I stand up I notice that it goes to around 100, mainly it’s steady 100 , I’m 18 6’2 160 pounds and I play basketball and lift weights, I have no real symptoms I’m very active when playing. I did some googling and my health anxiety just caused me to believe I have POT can you just give me ur opinion please? Also I remember just about 3 months ago when I my stressing was at its peak I remember my heart POUNDING so fast just getting out the chair in class but then when I stopped stressing it FULLY went away, so maybe I’m just overthinking and stress very hard and it’s causing it. I just went to the gym yesterday had a whole workout and then hopped on the bike cardio machine and it said my BPM was 130 . I’d love to hear what u have to say
@@Circa3fonethat’s not always true my friend. Any increase from 30-40 BPM from lying to standing is pretty extreme and can signal problems-most peoples only goes up by 10-20. But I do agree you would notice more symptoms than just that alone
Does anyone else with pots have a resting heart rate of 110-120 at all times even when laying down resting? I hear a lot of pots patients resting heart rates are under 100 but jump to 150 after standing. Mine jumps up when standing also, but resting heart rate is never under 100... maybe once in a blue moon it'll drop to 99 but that's RARE.
When you sleeping position your pulse would be under 100, when you sitting position or maybe 90-110 or more related to your condition , even sometimes when we standing but we move our bodies in this case also our heart rate begin to increase. While standing hear rate increase 130+
@@sheelawal7616 my pots it's almost gone.. exercise help a lot..just few minutes a day , not forcing yourself too much.. and eat more salt. Mine is also caused by a herniated disc in upper neck . Finding the cause will make recovery easier.
I would ask your doctor about that :) I was on beta blockers for 5 years and starting beta blockers allowed me to not be bed ridden. It allowed me to a bit of the energy needed to pursue the lifestyle changes that were needed. So in my case I needed them and they helped a lot in the beginning.
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Explore further with my meditation and reflection journal prompts, available in the free POTS Resource Hub. Register once at learn.ivintila.com/pots-resource-hub/order/ to access these resources and more accompanying each video for free.
Thanks for sharing more of your story with POTS. Perhaps a controversial idea but I found letting go of the expectation that some doctor or treatment was going to "cure" me the most liberating. Giving my body permission to be different than others, letting go of the need to be "normal", and taking back the power I'd given to medical professionals to help me culminated in my biggest breakthroughs. The healing you mentioned could only come when I found acceptance for where I was. In my journey so far I've found that tools are necessary and help a great deal but mindset is also powerful! :)
So eloquently stated. Thank you for sharing, Amanda. Letting go and accepting is not the same as giving up. But in a way, only through accepting where we are and working with the current limitations can we actually move forward. It sounds so counterintuitive at first though!
You’ve nailed it!! ❤ same story. And now I feel sooooo good and symptoms have almost gone 🙏🏻
Wow this is interesting! I too was diagnosed with Gastroparesis late in high school. I had some acid reflux/stomach/ibs problems earlier as a kid. Gastroparesis improved with low dose Nortriptyline and a regiment of antibiotics. 12 years later alarming onset of symptoms similar to yours including cardiac and brain fog but with the inclusion of severe headache. It’s been 11 years since that sudden onset but I have been learning to manage after being diagnosed with POTs.
What’s more interesting is I even have the left eye ptosis that you exhibit. The Gastroparesis and ptosis I think are uniquely important shared symptoms among POTs patients that may mean something to the correct Doctor. We just need to spread the word to our health care providers until someone connects these dots. I.E some impingement of a nerve (Horner’s syndrome) etc.
I believe that if we patients band together and share information we can advance POTs treatments and I’m really hopeful of discovering the root cause(s). If we know the cause, we can find the “cure” and be healed.
The cause is your own subconscious. It’s repressed emotions. Look into a mind body approach
And it's Asperger's add the subconscious mind hsp
I’ve been having all those symptoms for a long time now. Just recently I ended up at the ER multiple times due to high heart rate, they couldn’t find anything. Now, my doctor is putting me on a heart monitor and she’s telling me that it’s just me having high anxiety and depression but I know there’s more than that. My body hasn’t been normal, I feel so empty. I can’t even function, I can’t even drive or sit in the car without feeling like I’m going to past out. I will definitely tell my doctor to test for POTS. Thank you for sharing your story.
Your story sounds very similar to mine. I kept ending up at the ER for the high heart rate, and no one was ever able to give me an answer. Kudos to you for trusting your body and persevering. I hope you get some answers.
Hi Michelle. Same here how have you been coping
In the same situation since March 2020. Told exactly same thing. 9 grand and 3er visits later trying to tackle this myself. I can say I have improved slightly.
I immediately assumed my POTS was due to neck trauma (I have many many). I had zero POTS issues in childhood / teen years. I was told there was no connection by my neurologist but now I’m quite sure he is wrong. So I’m considering the cause is cervical instability, an issue with my c1/c2 vertebrae. I already know from an X-ray it is rotated and facets are tilted. I am considering Prolotherapy. Opinions? Anyone?
I was raised meditating so please no one tell me it’s repressed emotions. Sorry but no.
Guess what - I had gut dysbiosis from parasites and h pylori. This brought on a year of constant problems. Including major diet shifting. I started treatment for those but then pots went off from having COVID while on my treatment. I had to completely stop my treatment and ended up in ER because of the panic that occurred from pots (I fainted from nothing, and then the next day I took a hot bath and it triggered a major tremor attack). So your words are making so much sense to me. Thank you so much 🥺 I used to be a fitness trainer and enthusiast but then I had 2 c section babies and couldn’t exercise or get out of the home much. Now I realize why I always felt a healthy lifestyle was important to me. This is making me realize how much keeping myself at a certain base is necessary. (Water, steps etc). I’m aware people will judge me for what’s going on but I don’t care haha I either care too much about opinions or get healthier. I can’t have both. Now I think I had some kind of MCAS reaction during my tremor attack.
What is the solution, pls answer , what did you use
Hi, it's a mix of things. You can see more in depth here:
mailchi.mp/2c90c8b32bfb/potssecrets
ruclips.net/video/d-QV0JNff68/видео.html&ab_channel=IoanaVintila
I am so glad I came across your videos. I have some hope of getting out of this. I have had type 1 diabetes for 36 years now and started experiencing pots symptoms when I was 13 and it got much worse over time until now I can’t keep food down and today I can’t even sit up. I’m so depressed I have 2 kids and just went through a brutal divorce. I just want to heal and be able to work and maybe enjoy 1 activity w my kids a day and maybe one day grocery shop again.
You're not alone in this fight. The majority of POTS people I meet have had some kind of symptoms since they were quite young and various triggers along the way made it significantly worse. But even then it doesn't mean that it continues to be downhill from there... I've seen plenty of uphill as well. Even if they were struggling from early on. Sending you soft hugs.
Have you tried taking vitamin b? They "feed" the nervoud sistem. It helped me a lot.
@@ivintilawhich medicine u take for pots please answer
Do you do anything to keep your MCAS at bay aswell as your toolkit ? What about your joints with eds - did those improve? Xx thanks
Mhm, that's a really good question. I tended to focus mostly on POTS as that was my first diagnosis and it's sometimes hard to figure out what causes what.
Interestingly enough, the MCAS symptoms (redness and flushing, sensitivity to wine and some other foods, etc.) also faded away with the POTS symptoms. They seem to be quite intertwined. I think with MCAS what helped a lot was dietary changes and working with the vagus nerve.
There has also been a lot less joint and muscle pain (perhaps EDS symptom or not). What helps a lot with that is moving. The more I move, the better I feel. But that wasn't the case before. I would feel worse when moving (fatigue, other pain, etc.). So it's really interesting how the body changes when it's starting to heal.
My Hope is that I can learn how to meditate the way dr. Joe dispenza does and my body will switch. He talks about it happening all the time with people that go to his workshops. In the meantime I'm reading his his books and trying to manage symptoms and make lifestyle changes. I found a great clinic that specializes in pots about 40 minutes from where I live so that's an answer to prayer. This has been very difficult for me cuz I'm an athlete and I have all these things trying to slow me down with my occupation and my fitness. Nothing used to make me tired.
Thank you for sharing this. It's encouraging and thoughtfully put.
Thank you for the kind words!
THIS VIDEO IS ANAZING!! Btw I have a quick question lately I’ve been just checking my pulse non stop; been going thru a health anxiety phase tbh. I just want to ask a quick question, so when I’m sitting I notice my average heart rate is around 69-72 but then when I stand up I notice that it goes to around 100, mainly it’s steady 100 , I’m 18 6’2 160 pounds and I play basketball and lift weights, I have no real symptoms I’m very active when playing. I did some googling and my health anxiety just caused me to believe I have POT can you just give me ur opinion please? Also I remember just about 3 months ago when I my stressing was at its peak I remember my heart POUNDING so fast just getting out the chair in class but then when I stopped stressing it FULLY went away, so maybe I’m just overthinking and stress very hard and it’s causing it. I just went to the gym yesterday had a whole workout and then hopped on the bike cardio machine and it said my BPM was 130 . I’d love to hear what u have to say
I was wondering the same thing man.. have you got any answers ?
@@Circa3fonethat’s not always true my friend. Any increase from 30-40 BPM from lying to standing is pretty extreme and can signal problems-most peoples only goes up by 10-20. But I do agree you would notice more symptoms than just that alone
Going from 65-105 is a pretty big swing just for standing is what I’m saying here
So do you still meet the diagnostic criteria or not?
I do not.
Hi! Have you tried alpha lipoic acid?
I have. I can't say I noticed any difference but I took it in combination with other supplements after my FM testing
Does anyone else with pots have a resting heart rate of 110-120 at all times even when laying down resting? I hear a lot of pots patients resting heart rates are under 100 but jump to 150 after standing. Mine jumps up when standing also, but resting heart rate is never under 100... maybe once in a blue moon it'll drop to 99 but that's RARE.
When you sleeping position your pulse would be under 100, when you sitting position or maybe 90-110 or more related to your condition , even sometimes when we standing but we move our bodies in this case also our heart rate begin to increase. While standing hear rate increase 130+
How are you now my resting heart rate is 100
ARE YOU TAKING ANY MEDICATIONS OR SUPLEMENTS THAT HELP?
I find vitamin b helped a lot.
Great to hear that!
Which type of vitamin b or all the vitamin b
@@sheelawal7616 b12 b6 b3.
@@sheelawal7616 my pots it's almost gone.. exercise help a lot..just few minutes a day , not forcing yourself too much.. and eat more salt. Mine is also caused by a herniated disc in upper neck . Finding the cause will make recovery easier.
@@mya92c17Hello! Please tell us what helped you. B vitamins, exercise, salt, what else did you do and how are you feeling now?
Did beta blocker help ? Would you recommend it
I would ask your doctor about that :)
I was on beta blockers for 5 years and starting beta blockers allowed me to not be bed ridden. It allowed me to a bit of the energy needed to pursue the lifestyle changes that were needed. So in my case I needed them and they helped a lot in the beginning.