This video couldn’t have come at a better time!! I just got diagnosed with hEDS and POTS yesterday at 16 years old. Luckily I was already subscribed and got the notification to come check it out. Thank you so much for these videos!!! They help so much!!
just got a walker and omg, its the best thing ever! i didnt want one for so long because i thought it drew so much attention, but its just so worth it because i can go places and do things that i avoided!
I’ve recently been diagnosed with pots as teenager, and everyone around me downplays my symptoms. every day I can barely walk, and everyone just tells me it’s because I’m lazy and never get exercise. WOW I WONDER WHY I CANT GET EXERCISE?????? MAYBE BECAUSE I CANNOT WALK FOR MORE THAN 20 MINUTES??? I’m not even allowed to have a cane because “that’d be giving up” and it’s so tiring.
For the people who are refusing to get you a cane or a Rollator, ask them if they would refuse to wear glasses if their vision isn’t perfect? A medical device is a medical device, and they should be supporting you - not hampering your treatment. I wish you well.
That's very true, that may be the most important thing to be aware of, that the POTS will likely improve once we figure out the causative illness and start treating those symptoms! 💖
i cried in the first minute of the video, lol. i was diagnosed a month ago and i DO feel so hopeless. seeing people like you who have rich and fulfilling lives despite chronic illness is so inspiring.
Rich indeed. She really lucked out though. Sometimes the only thing standing in your way to quality of life is receiving proper care. And that care requires a lot of money. Especially if you live nowhere near a Dysautonomia specialist.
I know it's not the main focus of this one, but I can't second the underlying issue one enough - we very highly suspect that severe mold poisoning was the original trigger for mine almost 6 years ago, and the more we got the mold thing under control, the better my POTS got. There are other underlying causes for mine (hEDS being just one of them), but electrolytes (I can't drink plain water, even if I eat something salty with it - the electrolytes have to be actually mixed into whatever I'm drinking, otherwise the water strips the electrolytes out of my system) and getting the mold under control have been the 2 things that have helped me by far the most. I'm probably one of the only patients my primary has had who was 99% sure it was POTS as soon as it started happening, but the only reason I knew about POTS in the first place was because I'd already been following for a while some youtubers who had it (and following not b/c they had it, but instead for the SD research), so I already knew what to look for. Doesn't mean it was easy to get a dx, though - the situation was complicated by the fact that I was doing on-campus grad school at the time, but we (my mom, my primary, and I) had to fight through a neurologist (twice) and 4 cardiologists before we found a specialist who was willing to even order a TTT (all but the very last one blew me off - thankfully, I never got the "it's just anxiety", though; my primary would have ordered the TTT, but the system was such that she wasn't allowed to), so instead of it taking just 3 months (the nearest facility to where I live that has the equipment to perform a TTT is 2 1/2 hours away, and I can't drive that far alone; the times where we did a PMTTT (poor man's) in the office, it wasn't done correctly and thus was just blown off), it took 14. And even so, the dr. who developed the TTT in the first place told me point blank to my face that some of the things I was doing to manage my energy levels and such were only making things worse, so even he doesn't understand what it's like to live with it (e.g. in certain circumstances, using a wheelchair to conserve my energy when I could so that I would have the energy I needed at the times where I had no choice but to walk; and actually, the wheelchair was for something else entirely (something where a walker wouldn't have helped) but had the added benefit of conserving my energy as well - I've never actually fainted, my EDS is fairly mild, and I do much better on uneven surfaces than smooth ones, so I do have those going for me), and one of the main things he told me _to_ do backfired due to the real reason I started using a wheelchair in the first place.
I am convinced having a tongue lead to me having sleep issues-tmj pain-headaches- which lead to a sensitive nervous system -->fibromyalgia -->POTS symptoms. It's all connected. When you don't sleep or when you're on fight or flight so often-it can lead to POTS.
So many of these are such great tips for other conditions too!! I don't have POTS but I do have OH and can get temporarily become 'POTSie' during migraine w/ brainstem aura cuz of the autonomic aspect. Using some of these already but got a couple more really great ideas here. Thanks, Jen!! 😊❤
Learn how to make adjustments, know your limitations and know when you have to quit the task and rest. I started dealing with this 31yrs ago but didn't know what it was. Back then my dr was going through to figure things out but then she moved away and I never found another dr until a few yrs back after my series of brain injuries. Already been through all of the MRIs and finally have a dr that listens and sent me to a cardiologist and getting me help for this. As hard as the diagnosis is better to know now vs before not having a diagnosis or help.
@@MommingwithMigraine Not yet, she has had her orthostatics done. I keep telling her you need to fight for a TTT. She recently switched cardiologists because her last one said and charged her for autonomic testing. When I’m fact they were extremely unhelpful. I know you can relate to doctors being dismissive and having to advocate for yourself.
Shower chair..... I only stand to wash wash my hair and.... ok, we'll end that story. YES, I love my shower chair!!! Soon to upgrade my walker to the style as yours ;)
Didnt know i had pots for a long time. I stopped eating a bunch of salty foods because of an eating disorder (working my way to recovery) and i always forget to drink water cuz of the ADHD. I had a really bad episide at work to the point i had to lay on the ground to get my heart rate back to normal. Working my way to learning how to live with this new diagnosis but this video helped so much! Gonna work these into my life to see what works for me❤
Thanks for all the tips. I’ve had POTS for closing in on 9-years now and thankfully have found really good success with medication. Could someone educate me about how a walker could be helpful for a POTS patient? I could be having a dumb moment, but the mechanics aren’t quite clicking in my brain. Maybe it’s one with a seat?
4 wheels and a seat! It's amazing to sit ANYTIME! But when walking it helps with balance checks which reduces my nausea 💜 I'm considering a video of pros & cons of using a Service Dog vs a walker for POTS. Want that?
@@MommingwithMigraine oh good to know, thanks for clarifying! I do really love the minutiae of different aids, so your video idea sounds great. One thing I would recommend, though, is some sort of disclaimer or section about needing to try and prevent decompensation or incorrect muscle compensation. It’s somewhat unavoidable when dealing with disabling conditions, but sometimes using aids causes certain muscle groups to be underutilized and atrophy (and others to be over utilized and prone to injury). Aids are great tools and finding the right ones for the right situations is a mystical process. Thank you for all you do!
@MommingwithMigraine Hi, I recently got one of those rollators that becomes a transport chair of necessary. They are amazing ! You walk all you are able, sit to rest as necessary, and when you're "done," someone can push you. It makes events and long days much easier on a person with multiple chronic illnesses.
Wow .. out of curiosity how would you solve or lessen the walking and stopping and getting super POTsy and i personally drop to the floor when i stop .. (pre sycope) Ive noticed that for a long time myself got diagnosed with POTS , 2 weeks ago in hospital for a week been admitted . Ive thought bout it for long time i think its sommit to do with E=mc² .. xD i notice the faster im walking and stop i will literally drop to the floor pretty much unconscious.. curious to maybe why or how to help it ?? Well done for your videos Hope yer well :)😊
I feel like I may have POTS or MCAS. We need more resources out there for those recently diagnosed ♡ Do we know anyone who has the knowledge and need a website as a thought leader?
The POTScast is very helpful. Stories of patients with POTS and doctors who give their advice. They also have website Standing Up To POTS. Hope this helps.
Awesome tips! I was disabled because of a spine injury when I was in my early 40's. I hated having to use a cane to walk or a scooter to grocery shop but now I gladly use any "helps or accommodations" that grant me the freedom to do the things the injury blocked me from. I gladly sit upon a scooter at the grocery store despite some of the looks I get because of my age and size (I was always plus-sized but the physical restrictions of the injury added 150 pounds to me...that's one overweight American...lol!) and there will always be those people who are cruel who really have no clue but feel their advice needs to be shared with you. I get a lot of "If you joined a gym... or You're fat and lazy..." and I have to keep in mind they have no clue about my injury (because I look normal) or my physical restrictions. I think it was hard for me mentally at first to use these "aides or helps" because I was super physically active pre-injury too. But I was told from the start that I would be a paraplegic by the end of the year and it's been well over 18 years and I am still walking because I use any device available to me to help me accomplish life. Again...great tips! Thanks!
My brain is leaking again. My family wants to get rid of me when I am my sickest. Idk why I am so cursed to have this illness. I wish I was dead to be honest.
@animallover8779 I fully understand you! i have POTS too and I struggle with my family support ;( it is very disabling and not that visible! I’m seeking for more external and friends support. Big hug 🤗
This video couldn’t have come at a better time!! I just got diagnosed with hEDS and POTS yesterday at 16 years old. Luckily I was already subscribed and got the notification to come check it out. Thank you so much for these videos!!! They help so much!!
just got a walker and omg, its the best thing ever! i didnt want one for so long because i thought it drew so much attention, but its just so worth it because i can go places and do things that i avoided!
I’ve recently been diagnosed with pots as teenager, and everyone around me downplays my symptoms. every day I can barely walk, and everyone just tells me it’s because I’m lazy and never get exercise. WOW I WONDER WHY I CANT GET EXERCISE?????? MAYBE BECAUSE I CANNOT WALK FOR MORE THAN 20 MINUTES??? I’m not even allowed to have a cane because “that’d be giving up” and it’s so tiring.
It can be so disabling!! A walker or cane is not giving up, it's REFUSING TO GIVE IN
I believe you and mobility devices give us freedom❤
For the people who are refusing to get you a cane or a Rollator, ask them if they would refuse to wear glasses if their vision isn’t perfect?
A medical device is a medical device, and they should be supporting you - not hampering your treatment. I wish you well.
Do you have a smart watch that monitors your hear rate? If you can, get one, and then they can “see evidence” of your episode. 🥰 🙏
I recently got diagnosed with POTS and your videos are really comforting so thank you so so much
That's very true, that may be the most important thing to be aware of, that the POTS will likely improve once we figure out the causative illness and start treating those symptoms! 💖
That's how it happened for me! It does get better.
These tips are good for many chronic conditions.
Yes, absolutely!
i cried in the first minute of the video, lol. i was diagnosed a month ago and i DO feel so hopeless. seeing people like you who have rich and fulfilling lives despite chronic illness is so inspiring.
Rich indeed. She really lucked out though. Sometimes the only thing standing in your way to quality of life is receiving proper care. And that care requires a lot of money. Especially if you live nowhere near a Dysautonomia specialist.
I know it's not the main focus of this one, but I can't second the underlying issue one enough - we very highly suspect that severe mold poisoning was the original trigger for mine almost 6 years ago, and the more we got the mold thing under control, the better my POTS got. There are other underlying causes for mine (hEDS being just one of them), but electrolytes (I can't drink plain water, even if I eat something salty with it - the electrolytes have to be actually mixed into whatever I'm drinking, otherwise the water strips the electrolytes out of my system) and getting the mold under control have been the 2 things that have helped me by far the most.
I'm probably one of the only patients my primary has had who was 99% sure it was POTS as soon as it started happening, but the only reason I knew about POTS in the first place was because I'd already been following for a while some youtubers who had it (and following not b/c they had it, but instead for the SD research), so I already knew what to look for. Doesn't mean it was easy to get a dx, though - the situation was complicated by the fact that I was doing on-campus grad school at the time, but we (my mom, my primary, and I) had to fight through a neurologist (twice) and 4 cardiologists before we found a specialist who was willing to even order a TTT (all but the very last one blew me off - thankfully, I never got the "it's just anxiety", though; my primary would have ordered the TTT, but the system was such that she wasn't allowed to), so instead of it taking just 3 months (the nearest facility to where I live that has the equipment to perform a TTT is 2 1/2 hours away, and I can't drive that far alone; the times where we did a PMTTT (poor man's) in the office, it wasn't done correctly and thus was just blown off), it took 14.
And even so, the dr. who developed the TTT in the first place told me point blank to my face that some of the things I was doing to manage my energy levels and such were only making things worse, so even he doesn't understand what it's like to live with it (e.g. in certain circumstances, using a wheelchair to conserve my energy when I could so that I would have the energy I needed at the times where I had no choice but to walk; and actually, the wheelchair was for something else entirely (something where a walker wouldn't have helped) but had the added benefit of conserving my energy as well - I've never actually fainted, my EDS is fairly mild, and I do much better on uneven surfaces than smooth ones, so I do have those going for me), and one of the main things he told me _to_ do backfired due to the real reason I started using a wheelchair in the first place.
I'm new to POTS your channel is amazing thank you for always vlogging answering so many questions I had that I didn't know I had
I am convinced having a tongue lead to me having sleep issues-tmj pain-headaches- which lead to a sensitive nervous system -->fibromyalgia -->POTS symptoms. It's all connected. When you don't sleep or when you're on fight or flight so often-it can lead to POTS.
So many of these are such great tips for other conditions too!! I don't have POTS but I do have OH and can get temporarily become 'POTSie' during migraine w/ brainstem aura cuz of the autonomic aspect. Using some of these already but got a couple more really great ideas here. Thanks, Jen!! 😊❤
Learn how to make adjustments, know your limitations and know when you have to quit the task and rest. I started dealing with this 31yrs ago but didn't know what it was. Back then my dr was going through to figure things out but then she moved away and I never found another dr until a few yrs back after my series of brain injuries. Already been through all of the MRIs and finally have a dr that listens and sent me to a cardiologist and getting me help for this. As hard as the diagnosis is better to know now vs before not having a diagnosis or help.
Love that you have a new Dr who listens!! 💜💜 Agree with your tips. So important.
I’m going on 21 months with pots. A friend of mine is suspected pots and but struggling to get a DX. So i just shared this video with her!
Thanks for sharing, hope it helps! Has she done the poor man's Tilt test yet?
@@MommingwithMigraine Not yet, she has had her orthostatics done. I keep telling her you need to fight for a TTT. She recently switched cardiologists because her last one said and charged her for autonomic testing. When I’m fact they were extremely unhelpful. I know you can relate to doctors being dismissive and having to advocate for yourself.
Shower chair..... I only stand to wash wash my hair and.... ok, we'll end that story. YES, I love my shower chair!!!
Soon to upgrade my walker to the style as yours ;)
Didnt know i had pots for a long time. I stopped eating a bunch of salty foods because of an eating disorder (working my way to recovery) and i always forget to drink water cuz of the ADHD. I had a really bad episide at work to the point i had to lay on the ground to get my heart rate back to normal. Working my way to learning how to live with this new diagnosis but this video helped so much! Gonna work these into my life to see what works for me❤
Thanks for all the tips. I’ve had POTS for closing in on 9-years now and thankfully have found really good success with medication. Could someone educate me about how a walker could be helpful for a POTS patient? I could be having a dumb moment, but the mechanics aren’t quite clicking in my brain. Maybe it’s one with a seat?
4 wheels and a seat! It's amazing to sit ANYTIME! But when walking it helps with balance checks which reduces my nausea 💜 I'm considering a video of pros & cons of using a Service Dog vs a walker for POTS. Want that?
@@MommingwithMigraine oh good to know, thanks for clarifying! I do really love the minutiae of different aids, so your video idea sounds great. One thing I would recommend, though, is some sort of disclaimer or section about needing to try and prevent decompensation or incorrect muscle compensation. It’s somewhat unavoidable when dealing with disabling conditions, but sometimes using aids causes certain muscle groups to be underutilized and atrophy (and others to be over utilized and prone to injury). Aids are great tools and finding the right ones for the right situations is a mystical process. Thank you for all you do!
@MommingwithMigraine
Hi, I recently got one of those rollators that becomes a transport chair of necessary. They are amazing ! You walk all you are able, sit to rest as necessary, and when you're "done," someone can push you. It makes events and long days much easier on a person with multiple chronic illnesses.
i’ve had pots since january 2021 and i’m still trying to deal with it i’m 16 now and have been getting better!!!
Wow .. out of curiosity how would you solve or lessen the walking and stopping and getting super POTsy and i personally drop to the floor when i stop .. (pre sycope) Ive noticed that for a long time myself got diagnosed with POTS , 2 weeks ago in hospital for a week been admitted .
Ive thought bout it for long time i think its sommit to do with E=mc² .. xD i notice the faster im walking and stop i will literally drop to the floor pretty much unconscious.. curious to maybe why or how to help it ??
Well done for your videos
Hope yer well :)😊
I feel like I may have POTS or MCAS. We need more resources out there for those recently diagnosed ♡ Do we know anyone who has the knowledge and need a website as a thought leader?
The POTScast is very helpful. Stories of patients with POTS and doctors who give their advice. They also have website Standing Up To POTS. Hope this helps.
Awesome tips! I was disabled because of a spine injury when I was in my early 40's. I hated having to use a cane to walk or a scooter to grocery shop but now I gladly use any "helps or accommodations" that grant me the freedom to do the things the injury blocked me from. I gladly sit upon a scooter at the grocery store despite some of the looks I get because of my age and size (I was always plus-sized but the physical restrictions of the injury added 150 pounds to me...that's one overweight American...lol!) and there will always be those people who are cruel who really have no clue but feel their advice needs to be shared with you. I get a lot of "If you joined a gym... or You're fat and lazy..." and I have to keep in mind they have no clue about my injury (because I look normal) or my physical restrictions. I think it was hard for me mentally at first to use these "aides or helps" because I was super physically active pre-injury too. But I was told from the start that I would be a paraplegic by the end of the year and it's been well over 18 years and I am still walking because I use any device available to me to help me accomplish life. Again...great tips! Thanks!
You're an amazing human I hope you know that. Resonated a lot. Keep going!!!!
Do you still recommend Dr. Driscoll's POTS Care program?
Yes! I just re-listened to an audio from it yesterday, actually. It's packed with so much info.
@@MommingwithMigraine Great - thanks!
It causes multiple sclerosis...?
Jabajaba…
My brain is leaking again. My family wants to get rid of me when I am my sickest. Idk why I am so cursed to have this illness. I wish I was dead to be honest.
@animallover8779 I'm so sorry your family isn't very caring when you need it most. Hang in there!
@animallover8779 I fully understand you! i have POTS too and I struggle with my family support ;( it is very disabling and not that visible! I’m seeking for more external and friends support. Big hug 🤗
I just got diagnosed from doctor yesterday knowing I nerd to do lifestyle changes