My BEST Advice for Those Living with POTS / Dysautonomia

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 YouTube. Much love and prayers to all of you who are struggling.

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 <3

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 😆

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.

Thank you for the videos! I am one of the rare guys with POTS and was just diagnosed two weeks ago.

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.

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

I was diagnosed with pots last Friday after 6 years of gaslighting from doctors bittersweet moment

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.

Came here feeling very anxious after a heart scare, now I feel more optimistic again, thank you :)

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.

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 ❤️

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 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.

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 ❤️

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.

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.

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 ❤

Thank you for sharing. It is much appreciated. 😇

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.