Right?! Funnily enough, it was when I stopped drinking LMNT daily (I later realized) that the really bad episodes started up. And here I was going, "well I should save it for when I'm hiking" and unknowingly made myself feel worse 😆
I thought the same thing about your fondness for LMNT! I know it’s tasty and that helps. But needing more salt in your diet was definitely a big thing. I think our bodies crave what it needs to function so we will do something about it. Now you have a good reason to have more salt than you were doing before! I hope you can get regulated soon. I also commend you for making sure the Dr’s followed up with all the symptoms you’ve had your whole life. Taking charge of your health is a big step. Congratulations on getting an answer. It really helps you move forward with your life in a positive way.
Hi Miranda! I recently found your channel a few months ago as I prep for my second backpacking trip and I've grown to become a huge fan of yours I love your bubbly personality and your positive outlook on pretty much everything you can think of. I can tell this video was hard for you to make and I can see your disappointment but I also still see you trying to stay positive which is super empowering to see and just please know the your fans see you and you are loved and supported!! Your videos not only bring me joy and happiness to my day to day life but they help instill the confidence I am doing to need when I go on my second ever backpacking trip!! THANK YOU FOR BEING YOU!! THIS IS YOUR SHOW GOSHDARN!! ❤️
Fellow POTS patient. Wishing you a swift recovery into “POTS remission”. Took me about 5 years but I’ve had it under control with minimal symptoms for about 10 years now consistently.
@@ngs5554 Protein and “good fat” forward diet. For me this means incorporating animal based proteins over alternatives at least once every three days minimum. The alternatives just aren’t the same. Iron supplements. Lots of salt. Weight lifting a few times a week. Extra breaks in the week to recharge and rest. Lots of water. And consistency. Usually, exhaustion and blood pooling in my hands are my first indicators that I’m about to loose my control over it and the reminder to eat some protein/salt/weight lift/rest ASAP. Most of the time this correct keeps me moving forward.
I'm an Ehlers-Danlos hiker with dysautonomia. "When you can't connect the issues, think connective tissues!" What's given me peace of mind is wearing a medical alert bracelet. I like RoadID, but there's plenty of good brands. I hike w/a pulse ox to check my heart rate and take breaks when I'm having spikes, I always have electrolytes, I bring a cork ball to help w/muscles issues and sublexes, I always have trek poles for added support since we lack strong internal muscular support, I hike as light weight as is comfortably possible, I try not to hike alone, I do yoga breathing and vagus nerve exercises to help regulate my nervous system which I find helps a ton, I wear long pants and bring warm gear to help regulate my body temp since I'm usually cold, I bring take NAC daily, whole food plant based diet, and my spouse/hiking partner is a nurse (bonus points hehe). Also it helps sometimes to use a hammock instead of a tent to avoid a POTS spell. Also when getting up, instead of just sitting up straight, roll onto your side and push yourself up from your side. Forcing yourself to take breaks when you don't feel like you need to is hard but necessary. And realizing you can hike the same thing twice with two completely different experiences. Sometimes I can hike straight uphill and be fine, and then other times I'm gasping for air because my heart feels like it's going to explode. It hasn't stopped me from hiking and enjoying the outdoors. I know it won't stop you either.
Also a backpacker/hiker with EDS!🙋♀️ Classic and hypermobile types (geneticist diagnosed). Also have suspected POTS, but my previous cardiologist was dismissive and I just haven’t pursued a diagnosis recently. Love all your recommendations/advice!
My girlfriend likely has hypermobile EDS as well. She's been struggling lately with feeling faint especially when hot outside and has always had some POTs similar symptoms. Recently had a tilt table test and she passed out and was diagnosed with vaso-vagal syncope. She also has symptoms such as peripheral neuropathy, gastroparesis/slow motility, GERD, food intolerance/allergy issues, fatigue, hypermobile joints, etc.
It is with both joy and sadness that I say welcome to the POTie family. I thought you might be a POTS sufferer but I don't like saying to random people "oooo I think you have...." I so glad you have some answers. The meds really help and also really help the anxiety they are gone changing for most. I got diagnosed 6 years ago after having the condition for about 15 years, it's just so helpful to have a name and something to tell people. Not going to lie tilt tables aren't fun, remember to tell your tech of any symptoms even if you think they are silly. I had a massive silent panic attack but didn't tell them as I the fear waste test would show nothing. It was only when my cardiologist asked me two weeks later that I admitted I had the attack. He explained that it was just a sympton of my heart rate jumping from 90 to 140 in under 2 minutes. So if your brain starts racing tell them so they can note it. It's not that the anxiety affects your heart rate but that your heart rate affects you brain and the lack of oxygen makes your brain panic. I have supported many people through their POTS diagnosis journey as a volunteer for EDS UK. If you have any questions even ones that feel really dumb I'm happy to answer them. It's only when you ask "is this normal?" That someone can say no and you can get the help to change it. Very quick POTS anxiety test. It you feel really anxious and you don't know why. Lay down and elevate your legs if the anxiety goes away in about 2 mins it's POTS. If it doesn't it's anxiety. Simple yet very effective. Sending you virtual support on this adventure you didn't plan on 😊
Thank you for this info! We are in the process of getting a dx for this and EDS for my 15yo daughter and I am curious as to what meds you have found to be effective? I know it's not a one size fits all situation, but I didn't think there was much you could do in terms of treating either, just lifestyle changes. Thanks for any feedback.
@@mnelson929 I’m glad you found this helpful. Standard disclaimer that this is my experience and I am not a health professional. I’m on 2 medication that alter my blood pressure and heart rate. The first is called Midodrine, the second is ivabradine. I take 2 medication that increase the volume of liquid my blood holds. The first is Sodium Chloride (slow salt) the second is Fludrocortison. The best website for advice on POTS is PoTS UK. They have pages about medication, lifestyle and compression wear lots of the advice is generally so is not country specific. The final thing is that as your daughter is 15 there is a restriction on some POTS meds for people under 16 so this may be the reason medication hasn’t been discussed. There are a number of videos on RU-vid by Dr Nick Gall. He is one of the leading experts on POTS and is my consultant. I hope this is all helpful 😃
@@mnelson929 I have EDS. I love the slogan "If you can't connect the issues, think connective tissues." I always tell people that an EDS dx isn't enough - get with a geneticist and get subtyped so you know exactly what symptoms to expect. I am pretty well managed now. If she's hypermobile, then she can learn to force herself to stop movement just before the hyperextension point to help protect her joints and muscles. Exercising in front of a mirror is helpful to figure out where to stop the movement. I hike with trek poles to help with additional support since we tend to have weaker muscles and can lack internal structural support. Yoga and walking have been very helpful, but always make sure to modify so as not to hyperextend. Medication wise, my doctor has me on NAC, CoQ10, methyl-B12, and magnesium. I snack on seaweed to get my salt, and my main liquid is just plain water. Diet wise, it's trial and error, but anti-inflammatory is important. My body loves plant based/vegan, but others thrive on an animal based diet. Because EDS can affect the digestive system and make it hard to absorb nutrients, I find it better to take my meds under the tongue when possible. EDS can also affect your teeth and jaw, so chewing can be a problem as she ages, at least it does for me, so I like to cut my food up so I don't have to chew as much. Flossing and/or oil pulling is super helpful. Oil pulling is one of the few things I've found to help strengthen my jaw joint. Avoid chiropractors. Because we tend to be hypermobile, adjustments are just a waste of time and money as it won't stay put. What's helped me more than anything though are vagus nerve exercises and yoga breathing because it works to help regulate the nervous system. And lastly - connect with a support group! There are groups all over and online. It's really helpful to have emotional support and people you can bounce symptoms off of.
I also had a panic attack and also didn’t say anything. I passed out shortly after. It was interesting learning that my lifelong panic attacks were something else entirely!
You're my hero! I mean not my only one, but anyone who can share something vulnerable especially with health, is a hero to me. Thank you for your willingness to share! Take care bud!❤🎉
Thank you so much!! 🫶 it has come up a lot on our recent backpacking trips, so it only felt right to share this with all of you, especially given how awesome and supportive this little community is!! Big love to you 💚
My doc said a pinch of table salt and a little sugar in water is a good alternative to re-hydration sachets. You can add fruit juice to taste if you want. I know many people have a preference for branded products for various (perfectly valid!) reasons but just mentioning in case anyone is caught short while travelling or needs a very cheap version it's maybe worth bearing in mind. Helps massively with my migraines😊 All the best!
There's an actual recipe for Oral Rehydration Solution, and yes, sugar and salt together are the most important thing, the sugar helps the salt be absorbed and used! I keep a shaker of NoSalt substitute as a way to add potassium, too, since it has a considerably longer shelf life than bananas.
How about a sleep test. CPAP therapy has helped me for over 15 years. I had all of the same symptoms. Lots of good old healthy air has really helped. No medication either.
@@jjmj7095 interestingly enough, I started with CPAP therapy at the beginning of the year. It's helping with some things, but still several other symptoms that are unresolved.
Glad you finally got an answer. It's a huge relief. The trails will always be there. Just take care of you. We're not going anywhere. Keep shining bright.
Due to a bad weather warning (heavy winds and rain) on my 12 day, no resupply, hike I'm now stuck in a tent for 2 days just hunkering down. So it's very nice to listen to one of my favorite hiking youtubers, even if it's not the nicest topic. However I know what a relief it it's, when you finally can put a name on the thing that you've had your whole life and don't feel like you're crazy. Happy hiking and stay safe😊
44 here, had lifelong issues that kept getting passed off as things that would be cured if I would "just lose a little weight" until I was 37 and got to the point where the chronic pain and depression made me not get out of bed for days at a time. Finally got diagnosed with a handful of different autoimmune issues and after gaining lots of knowledge and getting the treatments I need my life has gotten 1000 times better. Still go 6 months out of the year without hiking because I can't handle the heat like I could when I was in my 20's but man O man do I try and make up for it each year as soon as it starts to cool down.
A myriad of ailments can be counteracted by losing weight. It's important not to dismiss decades of confirmed data that supports that fact. I used to weigh 100 lbs more than I do now and I attest 100% that I've managed my diabetes (like to think I've completely reversed it) and improved my disposition 10 fold. I distinctly remember searching for alternative problems so I could excuse myself from eating whatever I wanted and fault those issues instead of addressing my true problem which was obesity.
@danieldeviers9934 understood but you are comparing apples to oranges in my situation. It took me years to find a Dr. that did not immediately just decided you are having this issue or that simply because you are fat. If I weighed 120lbs I would still have had most of the same issues.
@bigcmoore as a fellow autoimmune sufferer, I can attest to the doctors brushing off any and all symptoms based on weight, and in a lot if cases, it's the autoimmune diseases causing the weight issue (either over or under weight) and they don't even try (some of them) to get to the bottom of it. I've had so many doctors brush me off as hypochondriac and try to send me to a psychiatrist, only to fight to be referred to specialist after specialist to get an accurate diagnosis. I'm at 5 autoimmune diagnoses now, hopefully that's it! I don't want to be too greedy 😉 All the best to you in your journey to good health, and better medical treatments! Medical gaslighting is real! Never give in!
@@musingwithreba9667as a skinny person with a collection of autoimmune issues Doctors did not like me 😂😂😂😂 they had to use I don’t know a lot more, and it looked painful hahahaha I enjoyed it for every single patient in the universe where they get the easy way out. Not with me 😂(officially undiagnosable too)
@@DissiDanIt’s not dismissing data to say that doctors failing to diagnose you because all they can see is fat and fail to investigate the actual cause of issues. POTS and autoimmune diseases aren’t T2 Diabetes and aren’t going to be fixed with a different body mass index
I’m glad that they scheduled a tilt table evaluation for you, Miranda. Knowing the real issue brings a certain peace of mind, even if the issue isn’t great. It also allows for the correct remediation without medically chasing your tail… as you have experienced. I sincerely hope the doctors are able to improve your condition. ❤
I hope so, too! I have minor anxiety about the Tilt Table Test, because I read somewhere that it's possible to have a "good" POTS day and have that skew results, but I'm really hoping it can provide additional answers.
@@MirandaGoesOutsidemake sure to tell them if the blood pressure cuff is too tight and hurting you. I was in too much pain to actually pass out. After it was adjusted and they flipped me back over I was out like a light switch had been hit. It was the craziest thing. I didn't realize all of the other symptoms were with this. Maybe I need to talk to my PCP about it. Thank you for being open and love your content!
Also a POTsie here! I did the Tilt table test and they diagnosed me with POTS but I already knew that’s what was going on and the test really didn’t provide any extra answers, just a big medical bill! How can they charge so much for just tilting you on a table and checking your heart rate??!
Chronic migraine person here... cheers to open discussions about chronic conditions that might seem invisible to others. Just talking about it like this is super helpful. Be well!
Miranda, thank you so much for sharing. My wife was diagnosed with POTS a couple of years ago and it has been a ride for us. Doctors always want to relate it to stress, but no one knows your body except yourself. I hope your story reaches people that are feeling the same way and it allows them to pressure their providers to get to the bottom of their symptoms.
As a healthcare professional with POTS, EDS, chronic migraine, and IIH, this video is fantastic!! Everything in it is spot on - clear, concise, and accurate
Thank you for so openly sharing your health issues. Really hard to get used to a new diagnosis of a chronic condition. Hang in there there and stay positive. I’m an older adult with Parkinson’s, and day hiking keeps me sane. Ive learned a lot from you. I might even work myself up to an overnighter! Peace to you!
A young family member has POTS - diagnosed younger than you, and is getting good treatment and is doing very well. It takes time to figure out the right diet, exercise, and meds/treatment, but with patients and good docs, you’ll get better and better. Good luck with this.
I think it's really good to see somebody who is fit and active talking about these sort of chronic health issues so thank you. I think our society can often treat people with chronic illnesses as if we brought it on ourselves by not having a "healthy" lifestyle or because we weren't exercising enough or "the right way". in reality, anybody can have chronic illnesses and many are as active as their health conditions allow. Some of us were very active before we got sick or before our symptoms became a problem and may only now be less active *due* to our health issues, not the other way around. (and of course people's validity and worth is not based on them being active or some arbitrary metric of "fit & healthy" and if they have never been active fit people and have a chronic illness they still deserve compassion, understanding and rights). (I have POTS and like you it wasn't diagnosed until I was an adult. I also have ME/CFS following a Lyme Disease infection 13 years ago)
There is a serious lack of disabled/chronically ill outdoors content, especially for those of us with chronic illnesses. I'm so sorry to hear you have POTS but am personally excited for more chronic illness-meets-outdoorsy content. ❤ As an outdoorsy person with several chronic illnesses, I've found it so difficult to get out in nature even though it's 15 minutes away from where I live. As much as POTS sucks, I think you're about to reach and help a ton of people.
Also I find the energy and electrolyte snacks designed for athletes and stuff to be very helpful! The Jelly Belly Sports Beans are my favorite for emergency sodium.
One suggestion that worked for a friend of mine, so n=1 and all that. She was/is an avid walker/hiker before her POTS diagnosis. One thing that helped her was doing hypertrophy specific exercises to increase the size of her quad and calf muscles. It seems that either 1) increasing the size of her muscles helped the internal muscular/vascular pumping, or 2) the training helped her body acclimatize to shorter bursts of blood pumping work. Caveat Emptor: always consult a doctor before starting any training as a therapeutic tool for any condition, their recommendations and your internal wellness sense trump anything you’ll find in a RU-vid comment.
Thanks for much for sharing this! I had a positive tilt table test years ago after experiencing similar symptoms. I still remember the terrifying, pounding blackness that caused time to collapse, as I had to drop to the floor to avoid passing out entirely. I changed a few habits regarding what I ate and drank, and I do not have to think about it at all now. I look back on what happened and think my body was just trying to bring me and my life back into balance. I have a kind of awe now for the intelligence of our bodies. Hang in there, Miranda, and I hope you will always prioritize yourself. We are all pulling for you, no matter what :)
I got diagnosed two years ago with pots. I got dizzy and would faint when I would wake up suddenly to my baby crying, stand up and then lean over the crib. I nearly fainted a few times. It was scary before i knew what was wrong. I got salt tablets and that immediately improved the situation but when i got an official diagnosis it came as part of my diagnosis with hyper mobile Ehlers Danlos syndrome ( hEDS). I am really greatful for this diagnosis, I feel like so much of my life makes sense now.
This is awesome that you finally got a name for the problem that has been plaguing you! As someone who has bad knees, both reactive bursitis and missing cartilage in my kneecap, it means I can't do insane backpacking trips or hikes, but I am still able to work around it and go out and enjoy things. Knowing how to work around the hand you are dealt is way better than just sitting there going "Welp, guess I won't be doing THAT anymore" and letting it get you down.
YES. I feel grateful in some ways that I've been "working around" this issue without knowing what it is for so many years - now I can just do that more effectively, I hope. I appreciate you sharing that you're still able to get out and do stuff you love, even if it looks a little different!
@@MirandaGoesOutside Oh for sure, I feel like I need to make the most of what I have and not let it go to waste since there will be that day when I go "I wish I did this or I wish I did that while I still could!"
Glad that you are getting answers to what is going on. I am an avid hiker and love your channel! I also deal with pots and hiking. I found the electrolytes definitely was a game changer. I also, on long hikes, where knee high compression socks. This helps with any swelling and keeping my legs and feet from hurting. Looking forward to seeing you keep on getting out there.
Doctors love to put the "anxiety" label on things they're unfamiliar with, especially if you're a woman. Glad you actually got a diagnosis! I have an array of chronic illnesses that are around the POTS diagnosis but my tilt table test didn't show the needed change for a diagnosis. But I have migraine, dizziness, fatigue, low blood pressure most of the day especially when lying down, and all the POTS-y things so while I've given up on getting the label, I just treat myself the way I would if I had it and it works well for me.
I actually had the numbers to show POTS and they were still like…are you anxious? And I was like 🗿🗿🗿 no. I don’t know why docs have trouble giving people diagnosis, a lot of the stuff they prescribe for POTS is compression wraps, exercise, electrolytes and a persevering attitude - which is a LOT easier when someone believes you! My pots is also comorbid with other autoimmune issues. Good luck 👍🏽
@@202cardline "which is a LOT easier when someone believes you!" THIS. the hardest part of my chronic illnesses is the lack of support and belief by so many medical professionals. I have endometriosis, chronic migraine, and had a post-viral crash after having lyme disease. it's hard to fight for yourself when you're so TIRED all the time!
Thanks so much for sharing your health journey! I've been so impressed with your candidness about what you have been going through. I have Mast Cell Activation Syndrome (MCAS) which commonly occurs along with POTS. One of my kids has POTS, and our family has dealt with chronic health issues for over a decade, so I totally get the relief you feel when you can finally put a name to a confusing set of symptoms. With MCAS I went through a period where I actually had "exercise intolerance," and couldn't do much physical activity at all. I have to say that your videos have helped me break down backpacking so that I could start small and gradually attempt more and more, first overnight, then several days of backpacking at a time, and now I'm solo section hiking the Superior Hiking Trail in Minnesota (I bet you would love the SHT!) Your videos helped me to gather the gear in my pack, find gear that helped me be comfortable on the trail, and have patience with myself when I wasn't feeling well. I want you to know how grateful I am to you and the channel for creating content that has made backpacking accessible to me. I love your fun attitude, your perseverance, and your candor! Thanks again! and best of health as you learn more from the tests!
Auntie of a POTS patient here. Big hugs to you!! Our POTSie has, unfortunately, been unable to manage their exercise intolerance over the last year, and has missed being out in the woods so much. I'm so glad you're still able to be out, and also that you are being realistic about not needing to be out sometimes. ❤❤❤
My middle daughter has POTS and spent years with doctors giving bad diagnosis and assuming she was faking her symptoms. A good diagnosis, proper medication for the blood pooling, and physical therapy to try and keep blood where it is supposed to be really makes a difference. We know what you and other POTS sufferers are going through. Hang in there.
I am a 66 year old POTS patient. I was diagnosed three years ago, after fainting in my bathroom in the middle of the night. I think I’ve had it all my adult life, but it has gotten worse. I use electrolyte drink mixes,and compression garments, and try and walk and bicycle daily. Eating protein before exercise and getting lots of rest help. I have heart palpitations which I am working on with a cardiologist. If you have any questions, feel free to pm me. My symptoms include digestive problems, skin flare ups, tiredness, brain fog, pre- syncope, and other weird stuff.
Me and all three of my kids have POTS also. We are similar to the poster I responded to. I’m doing pretty well now at 54 years. You’ll figure out how to manage it. I’m still super active outdoors. Always helpful to know!
I was also diagnosed with POTS. I’m a nurse and I struggle a LOT with it. I have to push and pull heavy equipment frequently and am on my feet a lot. My heart rate is almost always above 100 even with my medication and I’m always exhausted. I understand the struggle and I went from hiking 15+ miles a day uphill to passing out at work or when cleaning. The struggle is real. Hoping you find a way to manage your symptoms and still enjoy doing what you love! I’m still trying to find a way to manage my symptoms and exercise to help my heart. It’s so difficult for sure.
Answers to health problems and putting a name to it is a big battle. knowing what it is and finding a treatment or ways to handle side effects is most of the battle. wishing you the best.
So glad you are on your way to better help through this diagnosis! Thank you for your videos! And thank you for sharing here, for those of us who are not on Instagram .
I absolutely love how this channel opens up about both physical and mental health challenges. You not only bring light to them, but you focus on how to still do what you love with these challenges and that is really want this world needs more of!
Prayers for you and I hope you have the support to help you through this journey. Road just has a fork in it, just have to reset and go w the new norm/direction. I hope you have a blessed week :)
Thank you for letting us know! I really like the show, but it really wouldn't be the same without you. So take care of yourself! I wish you and your entire team the best.
I really appreciate how honest you were about your relief in having a diagnosis and how it may affect your life going forward. Honestly, it's really nice to know that you are still planning to go backpacking and plan to learn how to adapt with this new life change. I feel like I have a lot of anxiety around my newer diagnosis preventing me from doing what I've loved for so long, so hearing that I'm not along in that journey is really nice. Just bc my body is different, doesn't mean I have to fully give up doing what I love. I still want to try, even if it will be like being a newbie again.
Thank you so much for being so open and honest about your health. It is actually really rewarding to see you open and honest to the rest of us about your health to help each of us as we navigate our own health journey.
I’m glad you have a diagnosis Miranda. It took many doctors and many appointments for me to be diagnosed with my disease. Many doctors, especially many male doctors, kept blaming my symptoms on my weight and didn’t look any further. Finally found a doctor who actually listened and was able to discover the real issue. I wish you better health and well being, and many more backpacking adventures! 😀❤️🌈
I'm so happy that you were finally able to get some answers and can move forward with strategies. We are all here for you and thank you for always being so honest. I am a huge fan of LMNT too, I drink it everyday!!
Best of luck Miranda! I know this is the beginning of a new journey for you and there will be a lot of ups and downs, but thank you for sharing this with your RU-vid community. We care deeply about you and want the best for you. Take care and know we’re behind you 100%! ❤
I’m so glad you’ve finally gotten a good diagnosis. Just KNOWING makes such a huge difference and points you in the right direction for mitigating symptoms. 🎉🎉
It makes my heart happy to hear your optimistic approach to your health concerns! Best wishes on the additional testing being informative and meaningful in helping provide a clear path forward.
As a backpacker with Neurocardiogenic Syncope I definitely appreciate you being so open sharing your diagnosis! POTS is not a well known disorder so more awareness is always a good thing. The tilt table test was something I went through too and while it feels odd as hell, just remember you’ve got a medical professional right there with you and you’ll be okay regardless of the outcome (I passed out in under 30 seconds). Rooting for your recovery! Enjoy all the salty snacks!
I’m stoked that you finally got an answer! Nothing more frustrating than knowing something is wrong and not being able to get a doctor to pay attention long enough to find it. Bravo and I’ll look forward to hearing your progress!
My daughter at age 15 had a preliminary diagnosis of POTS, another ER visit prompted an MRI of the brain and she actually had Chiari Malformation and had brain surgery 3 months later. Apparently per her Neurosurgeon it can be misdiagnosed for years in young women as: migraines, anxiety and even POTS. I wished everyone with neuro symptoms would be able to get an MRI. Good vibes and prayers sent your way!
I'm so glad you finally have some answers! Diagnosis is half the battle; if something has a name, you can fight it, you can understand it, but most importantly, you can treat it. I hope all the new tools to manage POTS help you to continue doing what you love & make life a whole lot easier!
Welcome to the zebra family! If you have POTS and chronic pain, it may be worth looking into ehlers Danlos syndrome. I have both and they commonly occur together!
I had the same thought when Miranda mentioned being assessed for comorbidities!--fingers crossed that it's not, but if it is, there's a very welcoming herd of outdoorsy types with connective tissue issues.
I feel this SO hard! After 40+ years in the outdoors I recently tested positive for Lyme Disease. I had just completed 40 miles on the A.T. and while on a family vacation to the beach I basically collapsed and couldn’t get my head off the pillow for two days. I took the same route with diet and lifestyle changes and have felt better than ever!
My advice: Keep that positive attitude. I have a family member with POTS, EDS, Celiac, and a lot of other things in that acronym grab bag. She does not let any of them kill her attitude. She is a talented crafter, got her MFA in writing, and stays active. Even if POTS eventually causes you to slow down a step, don't let it stop you from doing what you want.
Hey Miranda. I'm really sorry you have to go through this. Stay strong and positive is the best you can do. I know you got this ! Sending you love from Belgium.
Best wishes on your care and treatment now that you are correctly diagnosed. I am having trouble with my own diagnosis for a few issues now exacerbated by the onset of menopause. Still lots that is not well understood about female health. Good luck with your treatments and plans! Always enjoy your videos.
We've discovered that my 15 year old daughter has pots. After learning about her symptoms I'm going to get a check for it . Because I've had many of these symptoms. I hope that you are able to continue with your hiking career.. I love that you are upfront and open about your diagnosis
It’s good you’re investigating comorbidities. I have POTS and while annoying it isn’t as disabling as triggering an auto immune flare, which in turn exacerbates the POTS symptoms for me. Took about 4 years to get a handle on things and I’m able to do some hiking again, so long as the weather hasn’t recently changed that still leaves me feeling like trash for a week every time
I've been going through a lot of health issues lately and this video is what gave me the confidence I needed to advocate for POTS testing. I've just been diagnosed and as scary as it is I'm so grateful to you for giving me that push. Now on to the next adventure!
Stay strong Miranda. I’ve been dealing with a vestibular issue on and off for 5 months. Had to cancel my PCT journey as well. I’ve had symptom free weeks in between but it’s come back to haunt me recently.
I recommend wearing a pull-up to your tilt table test, as when take the test there looking to if they can get you to black out and have a seizure and for how long. If this happens they will recommend a pacemaker and possibly suspend your drivers license. However, in the event you black out and have a seizure, you will most likely lose both bowl and bladder control. I speak from experience and was diagnosed with neurological syncope. On a brighter note thanks for sharing your personal health issues and how to treat this condition, I will have to try this and see if this is part of the problem that I am having. I really hope you pass your tilt table test with flying colors‼️ Take care and I hope this takes care of your problems‼️
Congratulations on your diagnosis! At least for me, it is always such a huge relief to have a clear answer. I have EDS and POTS, and I can tell you that it is all very manageable once you figure out what strategies work for you. In fact, you were the one who inspired me to try to start hiking again after years of thinking I couldn't! I loved hearing your story about demanding your doctor test you for POTS. Great job listening to your body and advocating for yourself! Good luck on your journey!
My wife wound up with pots a few years ago following a certain viral infection. It's definitely a frustrating syndrome at times but knowing what you're up against is a huge help! Also, LMNT is the best!
I wish you well on tilt table test. I had done about 35yrs ago. I was diagnosed with a POTS-adjacent disorder: neurocardiogenic syncope. I pass out due to pooling blood when standing. They told me then that they had never had someone fail a tilt-table so quickly! 🥇😂 I have similar guidance- and totally have an excuse to sit at parties!
I’ve been dealing with similar symptoms for over a year now, which has been very difficult as someone who hikes regularly for work and recreation. My doctors have all just assumed it is anxiety related (and it very well could be) but now I’m going to suggest testing for POTS. I love your videos and your energy, and I just want to say thank you for the help. I hope you get answers soon and start to see a change for the better in your health
I’m a new viewer and I thought I could never do what you’re doing bc of my health issues. I had no idea we have so many of the same struggles. You give me so much hope that I can be more outdoorsy too! Prepping for my second camping trip right now 💕 best wishes on your health journey and thanks for being here 💕
Definitely good that you were finally able to put your finger on what all the symptoms were related to. Bummer you’re going through all of this. Good luck and I hope you get better!
I work in electrophysiology, which deals with the electrical part of the heart. We often have to ask ourselves is a heart problem causing anxiety or is anxiety causing a heart problem. Regardless of which is causing what, they both go hand in hand. Keep an open line of communication with your cardiologist. Ask as many questions as you want. Don't let a provider make you feel like you are overly worried or dismiss you and remember you have rights as a patient. If you question something or feel you need a different opinion, be your own advocate.
Hey, I also have POTS! I only found out after I was hospitalized when my heart rate spiked and would not lower no matter what they did, at least until they gave me blood thinners -- after they discharged me with an "I dunno" diagnosis, I went in for a check-up to get my normal doctor's opinion, who then tested me for POTS after looking over all my information, then giving me the formal diagnosis. 😮 Consistent low impact exercise (cycling) has been an absolute life saver for me, I recommend it a lot, especially because bikepacking and backpacking have a lot of overlap! I also am on a high sodium + high water intake diet, and that has helped so much. I'm glad you're hanging in there and have some answers!
Wow! I can see how having an explanation would foster hope. That's such a positive perspective. In that vein of hope, let's all hope you have no or curable comorbidities. Thank you for sharing your story.
Folks, just saying’, if you love Miranda and what she puts out into the world, this is all the more reason to support her on patreon. We can help keep her going and make sure that health issues don’t affect her livelihood.
A fellow potsie!! Welcome to the club. LMNT is my life lol. It’s so important to keep moving & keep up on the water and salt intake. At my worst, doing any kind of activity would land me in bed for days afterward. I went through a cardiac rehab program and it feels like I’ve done a 180 since my diagnosis 2 years ago! You also mentioned food intolerance & ruling out comorbidities-hopefully MCAS is on your radar for the that. I’ll say it’s not a fun illness to have but it can be manageable. POTS, EDS, and MCAS are pretty common comorbidities. Good luck on your journey, and sending all the good vibes for your TTT!
Glad you’ve gotten some answers for your health concerns and I hope you can come up with a plan to manage them so you can continue to do what you love to do! Currently undergoing some testing for my own health concerns but now answers yet. Thanks for sharing
I really love that you are using your platform to spread awareness, it will help so many people!! I have two kids with POTS, one hates salt, not a good thing. Look into sole, pronounced sole' is a quick way to get some extra salt.
