My BEST Advice for Those Living with POTS / Dysautonomia
Вставка
- Опубліковано 15 тра 2024
- Today I wanted to share with you my BEST life changing advice for my friends living chronically ill with POTS or dysautonomia. Did you know it was possible to live an amazing life while living chronically ill? It is! :)
//MY POTS STORY: • MY POTS STORY | Postur...
//SALT PILLS: saltstick.com/pages/vitassium
//Dysautonomia International: www.dysautonomiainternational....
//PROJECT DYSAUTONOMIA BOOK: amzn.to/2R3AYV8 *
//Favorite Compression socks (full toe): amzn.to/2RuCb7V *
//Favorite Compression Socks (open toe): amzn.to/2SorGDy *
/DO YOU NEED A LIFE COACH?? SIGN UP FOR A FREE CONSULTATION! www.aimeeesther.com/coachingw...
\\PRODUCTIVITY WITH CHRONIC ILLNESS COURSE: www.aimeeesther.com/courses
\\HOW TO BE HAPPY WITH CHRONIC ILLNESS COURSE: www.aimeeesther.com/courses
For more info on my chronic illnesses check out the links below!
POTS (Postural Orthostatic Tachycardia Syndrome)/ Dysautonomia: • LETS TALK ABOUT POTS! ...
Hashimotos: • ALL ABOUT HASHIMOTOS T...
Fibromyalgia: • ALL THINGS FIBROMYALGI...
CFS (Chronic Fatigue Syndrome): • LET'S TALK ABOUT CFS /...
SIBO (Small Intestine Bacteria Overgrowth): • ALL ABOUT SIBO | Small...
IBS (Irritable Bowel Syndrome): • LET'S TALK ABOUT IBS |...
Leaky Gut Syndrome www.health.harvard.edu/blog/l...
Chronic Migraines: • HOW I TREAT MY CHRONIC...
PCOS (Polycystic Ovarian Syndrome): • LET'S TALK ABOUT PCOS ...
Endometriosis: • LET'S TALK ABOUT ENDOM...
MY WEBSITE: www.aimeeesther.com
SHOP my activewear line: www.etsy.com/shop/AimeeEsther...
BUSINESS INQUIRIES: aimeeestherblog@gmail.com
*I am no longer on Instagram please email me aimeeestherblog@gmail.com
Out of all the many physical symptoms, by far, the worst for me has been feeling isolated and that no one understands or cares what I'm going through. That is why I am so thankful for you and other chronically ill ladies on UA-cam. Much love and prayers to all of you who are struggling.
You are amazing for all you go through! Sending love and prayers your way.
@@Aimee_Esther Thank you so much! How sweet of you to take your time to encourage me! ❤
I feel the same way but worse. I’m a rare case I’m a male and have the hyper pots variation. I’ve only met a few other men in the same position online none in person but I have a friend that’s a female with classic pots but hers is very mild.
I got Diagnosed wih POTS a few days ago and ive been having such a hard time coming to terms with it after being healthy all my life. This is all so new to me and i didnt know what to think of it, how to live with it, what mentality i needed to adapt, and how to adjust. I found your video today and everything you mentioned is everything i needed to hear, especially on the mental health part. thank you
So glad this was helpful! Let me know if you have any other questions you'd like me to address in upcoming videos 😊
I'm waiting for a diagnosis. I'm struggling so much, I no longer have any friends I'm an only child and I am 31 living with parents that are stressing me out. I lost all my savings, can't work and feel let down by God. I have nothing to live for. This all happened from a bout of food poisoning!
I also have PCOS, Fibroids, Endometriosis, IBS and now my dog is also injured.
I feel so cursed. I wish I had friends that understood what I'm going through but unfortunately I find a lot of people now are selfish and untrustworthy.
Stay strong, im 31 as well, got diagnois 1 week ago but been having symptoms for 3 years now. I defintely have to say, what does help is doing some Yoga if your into that, meditating with box breathing exerices and also regular pain killers time to time@@ilovedogs938
I never on my life related to someone so hard.. ever. I cried wstching this because i know all hope isnt gone for me with what im feeling, i was told all of my symptoms are either fake or due to anxiety for years, i never been diagnosed but i know almost 100% i have this and it seems debilitating at the moment. Thank you so much for raising awareness and making people feel like they have hope still and a chance.
All these years I thought I was having glucose issues bc I'd get symptoms that mimicked hypoglycemia, and when I'd eat, I'd feel better. I also had insomnia for 6 years that worsened over time. Had doctors telling me it was anxiety (in part, yes it sometimes was). I also noticed my energy was so low. I'd get out of breath. After working out I'd feel like I was going to black out. My eyes would black out when standing and was told by naturopaths it was adrenal fatigue, but doctors would say my adrenals were fine. Id feel worse more often in the summer. I have constant pain and gastro issues. Years and years of going to many doctors, I was finally diagnosed 2 or 3 years ago with POTS. My sleep doctor (neurologist) diagnosed me. It didn't come up on my tilt table test btw. It took me TWO years to truly believe and accept my dr's diagnosis. I was doing CrossFit a few times a week...how could I have POTS?! But after listening to the warning signs my body was giving me (blacking out upon standing, calves feeling weak/crampy, getting tired suddenly, heart rate increase) I began to notice the patterns and that when I put on compression socks and took salt, I'd feel better soon after. I finally started to accept I have POTS. Now I know how to prepare when I go out,and life is a little easier to deal with!
I still need to figure out how to wear compression socks and skinny jeans at the same time though! 😆
My POTS aids are:
Liquid IV electrolytes
Rejuva compression socks
Doc miller sports calf sleeves for summer
A smart watch
Essentia water
And when Im with my husband in public and I need to let him know I'm having a POTS attack, I call it a tacky attack so people don't think I'm talking about weed lol 😆
Hi do you know why you felt better after you ate? I have POTS and sometimes a snack will get me out of having an attack but never understood this
@@cheyennemendoza3096 funny you ask now bc in just the past couple weeks I've been monitoring my blood sugar and intermittent fasting 12-14hrs, and I've noticed my body isn't regulating insulin well. Eating sugary foods seems to aid in my pots flares and symptoms like fatigue, lightheadedness, sluggishness, etc. Sugar is also what would "fix" these symptoms for a little while, until my body would crave sugar again. It's a bad cycle. I highly suggest cutting sugar. It's hard bc I'm addicted but fasting has helped a lot. Research intermittent fasting and learn about insulin resistance! Fasting and cutting sugar isn't easy at first bc there will be times you think you'll be having pots flares or hypoglycemic episodes, but prick your finger and check your blood and you may find it's not low! It's quite possibly your body switching over to using the sugar stores in your liver bc you are not intaking sugar as it normal might expect. Just make sure when fasting to eat quality salt and drink lots of water.
I also just learned yesterday that potsies are more prone to having mild anemia. So if you're eating something that gives you energy, it makes sense that that would make you feel temporarily better. Especially if the food contains iron.
I was diagnosed with pots last Friday after 6 years of gaslighting from doctors bittersweet moment
I figured out I had POTS by myself and MCAS with the help of a fellow AuDHDer (I thought it was just HIT, that much I also figured out by myself...) a neurologist I went to didn't know what POTS was and told me I couldn't have dysautonomia. an allergist I went to told me I didn't have MCAS because it was "too rare". being gaslit and not taken seriously by medical professionals who are unwilling to admit the possibility of the patient sometimes being right, or more right than they are for that matter, is horrible, and I am living for the moment when I get my diagnoses and get back to them to make them realise dismissing people really does have the potential to create harm.
I was just diagnosed with POTS. Idk if I have anything else but that’s the only thing I’ve been diagnosed with which I know is strange for POTS. The diagnosis journey was so hard and I still wasn’t given any medication, just lifestyle advice. Thanks for making videos like this. POTS people unite
PS I decided to leave comments under most of your videos, in case you wonder, because I'd really like your channel to get more views. I think it's amazing, and that you're amazing (and I really hardly tell that to anyone on youtube). sending hugs and spoons.
100% relate to what you spoke about regarding letting yourself feel anxious. Accept it, don't fight it and ride it out. It takes some of the anxiety's power away.
Thank you for this video.
Absolutely!!
I get anxious at work because I’m worried about getting my job done and looking crazy. People don’t know why I suddenly need to sit down or they catch me with my feet up on the wall or they catch me with my salt shaker and think I’m an alien. And their like, get back to work!
Looking back, I’m certain I’ve had POTS for a long time. Back in 2015, I woke up one day Amy usual self and by that night, I was admitted to the ER after passing out at dinner with my daughter and family (this was a week before Christmas). Thus began almost a year of debilitating symptoms that landed me with so many specialists and being told over and over it was anxiety/panic disorder/depression. Things I had never struggled with before. But I just accepted it, tried many meds (only clonazepam and gabapentin ended up helping) and eventually it got better. I did pursue a celiac diagnoses, and cutting out gluten helped immensely but I was already starting to feel slightly better before then. Now I’m right back to where I was (thanks to Covid and/or vaccine), actually it’s worse this time around, and so glad I have been relentless with my doctors. Just hoping that I get through this flare like I did with the last one. Last time took over a year, and I had an amazing almost 7 years before this. Keep fighting the good fight ❤️
This was so helpful thank you
I'm struggling the most with DATING & ANXIETY
I needed to see this video so badly. Thank you.
anxiety is caused both by POTS and MCAS. it doesn't necessarily have to be something inherent to you in the grade you might be used to thinking it is. for me it was enough to take antihistamines to see how much it was affecting me daily.
POTS releases norepinephrine so that the sympathetic autonomous system compensates for the parasympathetic autonomous system being offline, meaning it literally stresses our body into functioning (hence the adrenaline rushes). MCAS does so by chemically triggering inflammatory reactions, hence feeling anxious after eating a triggering food (say, chocolate or peanuts). nocturnal anxiety/feeling wired is common with MCAS.
I do that too. I get up every hour,and try to do 5 to 10 min of stuff ,you can get a lot of exercises and household chores or food prep done when you do that throughout the day.
Yes! It's amazing how much you can get done by doing short moments of work throughout the day
Totally going to try that! I think I naturally have been off and on, but I'll make a more conscious effort🙂
This video is just spot on. I relate to every single word you said.
I am so grateful for you being u tube channel it helps me and encourages me as well. Big thanks for all you do
Came here feeling very anxious after a heart scare, now I feel more optimistic again, thank you :)
Aimee! I just found your channel and it is so uplifting! Thank you for sharing your story. I am very close to a POTS diagnosis but have been in limbo for a long time and seem to have a few chronic illnesses. Thanks for your perspective on anxiety and for the gospel perspective as well.
I recently discovered I have POTS after searching for answers for years. Watching this video I wanted to cry, maybe I actually will improve, honestly I will take any amount of improvement at this point. I can't function and am bedridden most days. Even though it is hard to hope, at least I know I'm not alone in my struggles and so many people can actually understand my journey.
Remember healing is not linear, you'll have ups and downs but I just like to believe that no matter what I'm trending upward.
Keep going, keep fighting. You got this! We'll fight this together
It's been inspiring to see your journey through this up close!
Awe thanks! :)
Suggest a low histamine diet. It changed my world.
Omg I needed to hear this so much. I’ve been so down lately. Currently in the process of trying to get a POTS diagnosis.. doctors have been dismissing my symptoms already, yet I can’t even stand up long enough to go to work. I’m about to lose my job for how many days I’ve missed and I’m struggling to find a job where I can sit down. And on top of that, I have so many other chronic illnesses that it’s just so discouraging to discover I probably have another one. So thank you so much for making this video 🥺❤️ you really really just helped me feel a lot less alone and like things are actually gonna be okay ❤️
paced resistance training produces more blood in the body/makes the heart more efficient at pumping and helps my POTS greatly. on the days I do it, I get flashes of feeling totally healthy. one caveat: my mast cells don't like it. they'll usually react, because muscles produce inflammation in order to expand. so there never seems to be an easy way out 😁
Thank you so much for this video it's so helpful and I'm grateful for your positivity. You mentioned that you never met someone with just pots by itself but that's actually what I've got! I'm really not sure what caused it to be honest but since turning into a teenager I've always not felt right as I experienced bouts of dizziness and ibs like problems until I turned 16 where I one day started feeling really dizzy everyday. I'm wondering if my pots started because of something to do with my hormones?
I'm meant to be starting university this year but I'm just don't think I'm well enough for it yet so I'm taking some time off. It just can get really hard when everyone around you is moving so fast and you feel like you can't move and are held back due to your condition. I'm praying for a brighter future going forward. Thank you again for your advice 💜
Your flair up of POTS video combined with a writeup from my cardiologist noting that I had POTS like symptoms helped me to work out that I really have POTS. Got officially diagnosed last week with POTS. Not going to lie I will miss coffee the most but I know I can easily have to much if I try to keep it to a minimum.
Yes, I have been recently diagnosed with PoTS, after years of CFS, but I feel I was misdiagnosed as more POTS than CFS... Being a fitness instructor it's hard but yoga has been a blessing along with slow Strength training. Thank you for your information
Thank you for sharing. It is much appreciated. 😇
You are so welcome
Thank you for this treasure trove of advice!! I’m very fortunate that my condition seems not too severe. I’ve learned that bolting around fast like I did for years as a courier, then later a barrista no longer works. No matter how the time is, I’m learning to move slowly and gracefully now. Reduces stress level and incidents of palpitations. Also crucial is the Breath. Making sure it’s always moving, in or out. I learned from Dr Berg about 10 breaths a minute as a good guideline, so a 5 count in snd same out, roughly. Sometimes if I’m chatting with someone I’ve had sudden dizziness, attacks and I realise I sometimes forget to inhale enough when I’m talking at length! Not good. And if I feel the slightest speeding up in the heart etc, I focus on those healing breaths. Thanks again Aimee! You’re doing many a great service ❤
So, so helpful and encouraging and inspiring! I was diagnosed with POTS a few weeks ago. Funny thing is, one of your videos popped up in my feed just a few days before I was diagnosed! I had ME/CFS for four years, and had recovered a few years ago, so I knew I was now experiencing another chronic illness. I didn't think it was POTS, though! But when the doctor said it is, I was shocked, because I had just watched your POTS story video! Thank you so much for making this video, as it is super helpful❤️. I am learning so much about POTS and other chronic illnesses during this time, and that makes me happy that if I meet other chronically ill people I can be more compassionate and understand what they are going through.
Oh no way, that's so cool! That's exactly why I share here on UA-cam to help those suffering and also to help spread awareness to those who don't know about POTS yet. Congrats on the diagnosis!! :)
Hi thanks for the video it made me feel less alone that’s for sure! I love your positivity ❤. I have been living posts for a lot of my adult life but it has been worse in the last few years and I was diagnosed post covid in Jan. I am pretty house bound due to my symptoms where I am light headed and have severe dizzy spells. I’m usually such a social person and love going for walks but I have lost my confidence to drive and walk long distances. I also have a young child so I’m active around the house with her but I want to be able to take her out and about again by myself. Any tips would be great.
HI! Wow this video made me feel way better. Thank you so much. I haven't been officially diagnosed. My doctor believes I have it, which most symptoms align with POTS so tomorrow when I get tested, I most likely won't be surprised. Your video really made me feel like I will be okay
You got this!! Let me know what your test shows!
I just got my diagnosis today! Finally. I have literally had POTS my whole life. As long as I can remember I have had it and now at 30 yrs old I got a diagnosis.
Welcome to the POTS fam! Not happy you're here (because you will be suffering from POTS Symptoms) but so glad you finally found answers. we're here to support each other. ❤️
@@Aimee_Esther thank you lol I have a question. Are compression leg sleeve just as good as compression socks. I can't stand wearing socks
I needed this! I’ve been diagnosed with POTS for 10 years. I truly feel like this trial was meant for me, it’s hard but I am the best version of myself. I’m the best house wife I can be and I have the best husband by my side who understands and supports me. It’s rough but I’m so glad to know other people are like me.
You are amazing! I love your attitude. :)
Love this! ❤️
The symptoms I can deal with, the socks, salt, electrolytes, massive water intake, staying cool, not eating bread or dairy, ECT ECT I can deal with.
Finding a job suitable for my condition I cannot
Yesss. This is so difficult. I made a video on this topic a few years ago: ua-cam.com/video/p4hBwp93_Ws/v-deo.html
Could you do a video about anxiety while going shopping or any day-to-day tasks that requires you to be out especially when you don't have support?
Yes! I'll add it to the list
I have severe neuropathy, RA, IBS, sarcoidosis, Fibro, clinical depression, and anxiety.
My mom is on a bunch of Facebook groups for POTS. I go on them occasionally but I get depressed if I stay on them too long.
I totally understand! I have the same thing, so it's important to know what is best for your mental health. Sometimes connecting with others and learning about your illness can be helpful, but sometimes it can be depressing. Do what's best for you! I switch inbetween🙂
Totally get that! I use them occasionally to ask questions or search questions but I don't like getting on daily because I agree it's depressing after too long. Do what's best for you!
Newly diagnosed and came across your video. Thank you. I am finding my way. My cardiologist just said water, salt & compression socks. Not much help. How much salt do I need? I made an appointment with a Pots cardiologist, long wait its not till August. I also am going to have to find a GI POTS Dr. The gastro I went to does not know how to help me. I bought compression socks sized L/Xl does not seem right but they are tight & fit me (cute too)
I was diagnosed 2 days ago and I am so thankful for your channel. I have binge watched all your pots videos! I also have endometriosis and an eating disorder so I’m which you with the variety of illnesses. One question... do you have any advice for brain fog specifically? My main symptom in hypotension after eating and then it’s followed by crazy fatigue and brain fog. Any advice it much appreciated!!!
Actually I do have a video coming out about brain fog soon. So much to say in a quick message so I'll save it for the video :)
Also congrats on your diagnosis!! :)
@@Aimee_Esther excited for this video too! 💕
Hypotension after eating is fairly common, as blood goes to the gut to aid in digestion. Wearing calf compression sleeves can help a bit, as can eating smaller meals and snacks spread out during the day. For extra help with POTS, IV saline infusions every two to three weeks.
Have they tried you on a small nightly dose of Clonidine to treat your POTS? This medication increases blood volume and reduces blood pooling, which can help.
Hey Aimee, you probably know this since you have Hashimotos, but the following are foods to avoid to help your thyroid: gluten, soy, onions, cruciferous veggies and fruit from the rosacea family. I know you're not restricting yourself with food right now, but for what it's worth. 💕
Thank you for this. One thing in particular struck me, and I wanted to comment on it because it's one of the things I care deeply about.
You're happier now that you are chronically ill. And it doesn't make sense. :) It makes PERFECT sense :). When you get chronic illness you are indefinitely placed under a certain set of constraints. This makes one think through what one really wants in life and what's important in life. So many, including myself back before I got sick, just let life swoosh by and career, material wealth, job, self development becomes a part of a vicious spiral where you lose yourself more than you find yourself. Once you get out of that spiral, many times things starts to make sense. And your priorities starts to change. And this, my friend, creates happiness you didn't dream about before.
It makes us more empathic towards other people, and we start to take care of ourselves in other ways. We start to evaluate our lives, our social circle, maybe adjusting it a bit to make a more healthy total, and the important thing is we finally get the freedom to start working on handling / healing if possible from the issues we carry around instead of just walking around with the fire extinguisher frantically running around trying to put out the fires.
To be honest, many of us need to have our headings adjusted. And a chronic illness or 5 hehe is an excellent oportunity to do so, and it even forces you. And this is often the beginning of real freedom for many of us.
I sleep with a salt shaker. I need it before I can get up and sometimes at night time.
So smart!
This video came at such a perfect time, I’ve been struggling 5 years but only just close to diagnosis. I’ve been given medication but ngl it terrifies me as I read the side effects which probably isn’t good
I'm glad this video was helpful. I hope you find some solutions that work for you soon. Keep fighting my friend!
I've been dealing with POTS for 30+ years. Don't worry too much about medication side effects, but do be aware of them. If something doesn't work well or gives you side effects you don't like, report that to your doctor so that he or she can find something different. It often takes time to find what works best for each patient, because we are all unique individuals.
Beta blockers are usually the first line option. These can have side effects like fatigue, depression, hair loss, sleep disturbance, cognitive issues, Raynaud's, etc.; but these don't happen to everyone. If you're like me and are one of the people who can't tolerate beta blockers, there are several other options. Ivabradine, Mestinon, Guanfacine, or Clonidine aren't beta blockers, but can treat POTS much better for some people.
@@Dulcimerist thank you so much, the first thing I’ve been prescribed is fludrocortisone, I’ve had beta blockers before and didn’t really notice a difference. I’m sure I’ll get there eventually with things to make it a little bit easier
@@jessss.x Fludrocortisone is a rather archaic treatment for POTS, simply forcing up the blood pressure by brute force. My blood pressure ended up getting way too high on that stuff, so keep an eye on your blood pressure while you're on it.
@@Dulcimerist see I don’t actually get low blood pressure so much, it’s my heart rate that goes crazy. I am monitoring my bp anyway and they’re keeping an eye on my bloods too
I have PoTS only but it is hard to accept it as I have been healthy all my life until October/23
I think I might have POTS. My main goal is to do the stand test. I went to a cardiologist on the 8 of March. My cardiologist is have low blood pressure drink 2L to 3L of water ever single day. I all ready knew that. There is another cardiologist who I want to see she know about POTS and Dysautonomia. Im worried it might be a waste of time money and energy. I just want to know if I have POTS or not. I want to get a second option but since I had a bad experiences with a cardiologist I'm anxious going back to another cardiologist. I don't know what to do next
My biggest thing is the people around me think I’m being dramatic
I was diagnosed with pots in 2018 and I have all of it. I push myself beyond my limits to be able to work an drive an it's really getting worse. And my ability to work is getting bad and sometimes driving is a little scary. I have been tossing back an forth getting on disability but not sure. But don't know how much longer I can work. Any advice?
❤️❤️❤️
POTS conference? When? Where? More information, please! Thanks!
check on www.dysautonomiainternational.org/
@@Aimee_Esther Thanks!
So let me tell you something Aimee. With all due respect i agree that your life can still be good with POTS, but im 63 years old with no husband and pretty sure i have POTS with extreme fatigue. Im the only bread winner. So when i can't work, i cant pay my bills. You have your husband to help you. So unfortunatley, some of us do have it a bit harder. Im sorry but thats how i feel. I can't have days where I just watch Netflix unless it's not a work day.
How do you deal with the brain fog or forgetfulness
Have you tried DNRS? A lot of your principles are similar
May I ask Aimee, and any other PoTS sufferers, why they have chosen to use a pulse oximeter over a wrist BP/pulse cuff or vice versa? I’m curious as I’m not sure which would be more beneficial for me. I’ve seen some people who use the wrist blood pressure cuff which obviously also measures your pulse, but then also others use the pulse oximeter instead. Obviously I do understand what each of them do but I just want to know what your thoughts are on which is better to monitor your symptoms please. Any advice would be most appreciated ☺️
When I went to the Er for my pots symptoms the nurse practioner who treated me said when it comes to blood pressure the wrist monitors are not as accurate as far as the diastolic measurement for some reason. I use the instant heart rate monitor app on my phone and my general practioner compared it to her pulse oximeter at the same time and she said the app was pretty accurate. Maybe fluctuating by a number or two.
It’s funny, I am way happier now than I was when I was healthy
Is there a group on facebook that I can join in?
I am starting a community in a few weeks! :) If you want to try it out for free, join my email list and I'll email you in a few weeks with info to join!
aimeeesther.podia.com/
Thank you!🙏
Do you have MCAS?
Yup!
@@Aimee_Esther i feel you girl! thanks for making these videos!
Thanks for your optimism! My health suddenly went crazy 10 months ago, and I don’t have a diagnosis for anything yet, but lots of similar symptoms. I have really bad anxiety at night too- it’s awful some nights. I appreciate the reminder to just let it pass.
I'm new to your channel. Did you try medical medium to help heal your POTS?
Easy for you to say. I’ve had Pots my entire life. I also have zero help. I don’t have a husband to take care of me. I’ve also never had any treatment for my pain as I was never properly diagnosed. You’re comments are tone deaf AF! Some people have worse pain than you or have had it longer, have never had proper treatment. I’ve been living in hell. You just don’t get it🙄
Well going find a doctor who can treat you instead of getting mad at her for having support
Alprozalam has really helped with my anxiety.