POTS TIPS // Advice for New POTS Patients

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Hello there, lovely viewers! In today’s video, we're diving into a topic that hits close to home for me - advice tailored specifically for all you incredible warriors who have just been diagnosed with POTS. If you're new here, POTS stands for Postural Orthostatic Tachycardia Syndrome - a mouthful, I know. But trust me, I've been right where you are.
FAVORITE POTS PRODUCTS (the ones I really use!):
○ Blood Pressure Monitor: amzn.to/3gjXi3t
○ Weighted blanket: amzn.to/2Eq39Hr
○ Compression socks (looser): amzn.to/3j14wv5
○ Compression socks (tighter): amzn.to/3aSZDRV
I remember those early days after being diagnosed with POTS - it felt like I was caught in a whirlwind of confusion, frustration, and an overwhelming sense of hopelessness. But guess what? I made it through, and so can you. That's why I've put together a list of POTS tips and the things I wish I knew when I was first diagnosed with POTS.
Now, you might be wondering why a migraine-focused channel like mine is delving into the world of POTS. Well, here's the scoop: while migraines have been my main focus, I've been battling POTS for a solid four years now. Yep, I'm fresh enough to remember those tough early days, yet seasoned enough to offer you some sound advice for new POTS patients that'll truly make a difference.
These POTS tips and tricks are nuggets of wisdom that I truly believe can help anyone dealing with POTS. From managing those dreaded flare-ups to finding the right support system, I've got you covered. So hit that play button and let’s get started.
If you HAVE POTS and SUSPECT A LEAK, watch this:
○ POTS vs. Spinal CSF Leaks: • POTS and Spinal CSF Le...
○ Main WEBSITE: mommingwithmigraine.com
○ Daily Life: mommingwithmigraine
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IMPORTANT POTS and Leaks KNOW THE DIFFERENCES
○ POTS vs. Spinal CSF Leaks: • POTS and Spinal CSF Le...
○ A POTS Episode Explained: • Play-by-Play of a POTS...
○ Part 1 of POTS Care Q&A: • POTS CARE Q & A // Dys...
○ Part 2 of POTS Care Q&A: • Part 2 of POTS CARE Q&...
○ Infant Potty Training (EC): • Infant Potty Training!...
○ Baby Potty Training 1 yr Update: • Infant Potty Training ...
○ Day in the Life Vlog (Making a RU-vid Video): • Behind the Scenes // A...
○ Life w/ 2 babies under 13 months: • 2 BABIES UNDER 13 MONT...
○ Our Nursery: • NURSERY REVEAL // Full...
○ Baby A’s Birth Story: • NATURAL LABOR & DELIVE...
○ Baby B’s Birth Story: • Second Baby Natural Bi...
○ 4th Trimester Overwhelm: • Is the 4th Trimester R...
○ Breastfeeding & Mental Health: • BREASTFEEDING & MENTAL...
○ Infant Tongue Tie Release: • Infant TONGUE TIE RELE...
○ My Adult Tongue Tie Release: • Adult TONGUE TIE RELEA...
○ My 1st Year RU-vid Analytics: • My FIRST YEAR on YouTu...
○ Butterfly Logo Meanings: • THE BUTTERFLY LOGO // ...
Content ID Code: VJAVWGRXRNCBROJC
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NOTE: Though I talk about medical topics, nothing on my channel is meant as medical advice (for all statements, past or future). I am a patient sharing my personal experiences, but I am not a doctor nor am I medically trained. My channel is for entertainment and community only.
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DISCLAIMER: Links included in this description might be affiliate links. If you purchase a product or service with the links that I provide I may receive a small commission. There is no additional charge to you! Thank you for supporting Momming with Migraine so I can continue to provide you with free content each week!

Опубликовано:

9 июн 2024

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Комментарии : 37

@norabell0743 9 месяцев назад

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!!

@zitoune8646 19 дней назад

I recently got diagnosed with POTS and your videos are really comforting so thank you so so much

@anastasiachristiansen9639 8 дней назад

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!

@Sleepii-goldie 6 месяцев назад

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.

@MommingwithMigraine 6 месяцев назад

It can be so disabling!! A walker or cane is not giving up, it's REFUSING TO GIVE IN

@Christinesobsevations 4 месяца назад

I believe you and mobility devices give us freedom❤

@lisacook1074 9 месяцев назад

These tips are good for many chronic conditions.

@MommingwithMigraine 9 месяцев назад

Yes, absolutely!

@SnowySpiritRuby 9 месяцев назад

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.

@julesr6965 4 месяца назад

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.

@natalieedelstein 9 месяцев назад

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!! 😊❤

@mariposavioleta9007 9 месяцев назад

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 9 месяцев назад

Love that you have a new Dr who listens!! 💜💜 Agree with your tips. So important.

@LindsayLou000 9 месяцев назад

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! 💖

@MommingwithMigraine 9 месяцев назад

That's how it happened for me! It does get better.

@MalloryElizabeth 9 месяцев назад

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!

@MommingwithMigraine 9 месяцев назад

Thanks for sharing, hope it helps! Has she done the poor man's Tilt test yet?

@MalloryElizabeth 9 месяцев назад

@@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.

@teethree141 4 месяца назад

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.

@maggieslifeisawildride512 9 месяцев назад

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!

@MommingwithMigraine 9 месяцев назад

You're an amazing human I hope you know that. Resonated a lot. Keep going!!!!

@rachaelgardner718 7 месяцев назад

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!!!

@Jilly_Neutron 9 месяцев назад

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?

@MommingwithMigraine 9 месяцев назад

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?

@Jilly_Neutron 9 месяцев назад

@@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!

@ArreisMorsCI 8 месяцев назад

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 ;)

@MelismaTheEnigma 8 месяцев назад

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 :)😊

@chriswatson276 3 месяца назад

Do you still recommend Dr. Driscoll's POTS Care program?

@MommingwithMigraine 3 месяца назад

Yes! I just re-listened to an audio from it yesterday, actually. It's packed with so much info.

@chriswatson276 3 месяца назад

@@MommingwithMigraine Great - thanks!

@RobdeKlerk-qg6lc 4 месяца назад

It causes multiple sclerosis...?

@rubberducky1507 Месяц назад

Jabajaba…

@animallover8779 9 месяцев назад

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.

@wanda9740 9 месяцев назад

@animallover8779 I'm so sorry your family isn't very caring when you need it most. Hang in there!

@betir5151 16 дней назад

@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 🤗