My POTS story // How I was diagnosed & underlying conditions

Before being diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) in 2016, I was an avid rock climber. It only took about 3 months to be diagnosed, but for many it takes MUCH longer. Living with chronic illness required many life changes for me and continues to be a challenge every day. I want to do everything I can to help others that are suffering.

POTS is a form of dysautonomia that leaves about 25% of patients so debilitated that they are unable to work or go to school. Though it isn't rare, many doctors are unaware of the condition. I made this video for Dysautonomia Awareness Month (which is October, sorry for posting late) in hopes of spreading awareness.

Some other chronic illnesses I have are: Ehlers-Danlos Syndrome (hEDS), Idiopathic Intracranial Hypertension (IIH), Chiari Malformation, Craniocervical Instability, Celiac Disease, TMJD , Chronic Mono, and UARS.

If you feel may have an underlying condition, please advocate for yourself by doing your own research & finding the right doctors. It's been over 2 years since diagnosis for me, and I am still being evaluated for comorbid conditions.

Don't give up hope!

Products & things I have found useful during my chronic illness journey ❤️️ →
(15% off code: FUSEDWITHLOVE)
(15% off code: RIBEYERACH)

Some of the links in the description may be affiliate links! This basically means that if you purchase something through the link, I might receive a small commission (at no extra charge to you). Thank you so much for supporting my channel! 🎗

#PosturalOrthostaticTachycardiaSyndrome #POTS #ChronicIllness

[adamball]

I remember that tilt-table test. I passed out so quick. Not being in control of your body is the worst. The common misconception is that the symptoms are only experience upon standing which isn’t the case. Everything is a trigger for it; dehydration, getting too hot, caffeine, alcohol, nicotine, sugar, not enough sleep, too much sleep, eating too many carbs, it never seems to end! This is a terrible condition and I don’t wish it on my worst enemy.

[rosemariealvarado]

I've struggled with POTS m almost my entire life since I was 10. Saturday I will be 71. Not 17. 71. Diet, supplements, chiropractic have made the difference for me

[shelbyrios]

I never thought having pots would feel so isolating but I love hearing other people’s stories with it and know I’m not the only one experiencing/struggling with this. ♥️♥️

[yaroubthayer-]

Horrible condition. What’s more horrible is I had to diagnose myself and conduct my own research, while incompetent cardiologists screech at me “it’s all in your head” 🤡

[ryleejulessixx]

I haven’t gotten diagnosed with POTS yet, but i’ve been in and out of the hospital these past 2 weeks with rapid heart rate and panic attacks for no known reason, i’ve missed 2 weeks of school and im a sophomore. I live in MN and we have been trying to go to Mayo Clinic. This is absolutely hell, thank you for sharing your story.

[abbyfellows]

I just came back from 12 hours in the emergency room. I have a traumatic brain injury, and after multiple fainting spells and always being dizzy, they told me they think I have POTS. I have to go to a cardiologist this Tuesday to get a heart monitor to see. I'm horrified. The first thing I did was jump on YouTube to see if anyone had ever made a video on it. Thank you so much for this

[leilabradney]

I've been struggling with POTS since I was a child, around maybe 5 or 6. I only got formally diagnosed on Friday (5-13-22). I'm only 15, but my family has been desperately trying to get me diagnosed for years. I would go to doctors sick nearly every month, and doctors would check my heart rate, and usually I was lying down or sitting up, but my BPM would be around 120 every single time. They would only ask "Is this normal for her?" and then move on. Usually they were like "She's got a cold." or something of the like. Dizziness, headaches, nausea, fainting, tunnel vision, confusion, shakiness, etc.
It was so frustrating in gym because I would constantly have to stop and apologize to my spotter/teammates and sit down constantly.
I would almost always black out when standing up, in worst cases I'd pass out, but I'd be okay. I got put on Propranolol back in November of 2021, I'd take 1 in the morning and 1 at night, but eventually I noticed it just didn't help at all.
The highest my heart has ever gone, and usually this happens when I pass out, was 202BPM, but the only time I was able to catch it being that high, was when I went to the nurse in school because I nearly passed out in gym. That was the final push for my parents to make me an appointment to get tested for POTS, or at least SOMETHING to figure out why I'm like this.
When I went to the appointment, I got diagnosed, but the doctor was blaming me the entire time. "She needs to take better care of herself, she'll be fine, why isn't she drinking enough water?" but, I take care of myself the best I can. I drink 3 liters of water a day when I can, I shower, I sleep fine, I take care of myself. It was horrible the way she talked to me, it was the first time I ever met her.
The doctors don't know why I have POTS yet, it could be trauma, underlying conditions, but we don't know yet. I could've just inherited it.
But, that's basically my story with it. Not even my entire experience, but that's mine. :')

[igo]

I noticed something is that, when I don’t drink enough water, I get POTs symptoms. So I have to drink about 2 cups of water on my bed before getting up. That makes it go away. I now aim to drink about 3 litres of water a day. I also noticed is that, after eating food, my POTs gets really worse to the point I can’t even stand up and even when sat down my heart beats very fast and loud pounding. So I have to eat small amounts every 15 minutes. That does trick. Another thing I noticed is that, when I first wake up in morning, that’s when the POTs are worse but after getting up and moving about, then everything seems fine. I can sit and get up without a problem. So yeah for me hydration, exercise and eating small meals helps. I really hope doctors finds the cause of it and cure too. Sending good wishes to all who are suffering from all illnesses. 🎉❤

[Infinitelyglamorous]

im fighting pots as well<3 praying for you!

[echastee]

I might have POTS. I finally talked to a Dr about it and I'm going to see a cardiologist. I don't even know how long I can stand anymore. I have started laying down a lot. I'm so tired. It all started when I was about your age. I used to be more active. I would run on the treadmill for fun and I liked to play volleyball and ride my bike a lot. But my heart started racing a lot. I felt like I couldn't do that stuff anymore. And now I barely can clean my apartment. Luckily I'm on disability for something else. There's no way I could work a job. I have to keep sitting down. It seems worse than I remember it being before. I'm 29 now. And I can hardly do anything now. I don't ever wanna do anything. I'm depressed. I'm so sorry you are dealing with this. I hope you were able to get back to some of your old activities.

[rashaetaylor]

Thank you for making this video! My 13 year old daughter has been battling POTS for 7 months now. It took months and many doctors to figure out that she has POTS. She has been slowly getting worse, headaches and stomach aches. She is such fighter and wants to get better sooner than later. Love your truth and advice. You are awesome girl!!

[madilynpiper]

I am glad that Mayo Clinic was a better experience for you, although I have a very different story from them. They put me into a program for other people with pots and actually took me off most my medication including my beta blocker. They continued to tell me that it was all in my head and that I needed to retrain my brain. It was the worst experience of my whole life. I am so proud of you, I have almost all the same things as you! You’re amazing.

[tanzieluv]

I was just diagnosed with POH/Orthostatic Hypertension which the cardiologist who was present during my tilt table test explained that since both my heart rate and blood pressure shoot up positionally, I have orthostatic hypertension. Staying hydrated, staying cool and taking time getting up and down are helpful for me... my neuro thinks I also have SIH spontaneous intracranial hypotension (spontaneous csf leaks) caused by my EDS and thinks it caused my Chiari so she is looking over my past scans... sending you positive vibes!! Finding fb groups is also a wonderful tool, that has helped and given me much needed knowledge! 💜🦓💜

[thebiglebowski]

I totally get you. I used to hit the gym at least 5 days a week. Have trained since I was a kid. I got covid twice, only 8 weeks apart. The second time, I just never got well again. 9 months later, I was lucky to get referred to a great exercise Physiologist who actually has POTS and he knew right away after looking at me. Did the Malmo tests etc and boom. Now on the journey to understand and hopefully get well. Thanks for sharing.

[muchancie]

You are the first one who really hit Pots on the nail, I’ve had POTS for 2 years I’m in Bed now 24/7, I can’t stand alone and when I was able to still stand I’d stand about 10 minutes and would Black out, it’s a terrible disease, I have done so much Research as You have & Actually your the only one who actually has a bad Case of POTS too, I’m hoping it will go away just like I got it, I was really fortunate I wrote down exactly how I was feeling and My Dr. Knew immediately that I had POTS, l also take Beta Blocker but I’m to sensitive to medication that I’m on the lowest dose it helps a little bit but not enough to be up on my own, My Prayers are with You that You will get through this too 😔

[alk.]

Hi, Rachel! After listening to your story, I definitely have to say that my heart goes out to you. I imagine that it must be absolutely heartbreaking on the inside, not being able to perform activities you love, to climb, run, and exercise at your full capacity. Not to mention how it impacts your regular day-to-day capabilities, for this to suddenly impact you in your youth feels really unfair. However, you seem to be handling all of this incredibly well, which is absolutely commendable; at a relatively similar age you certainly seem way more active than I am, because even for me, learning that running, going to the gym and exercising would suddenly put my health at risk would probably incredibly break me down and demoralize me, so I'm saying kudos to you for handling all of this well, and even educating and sharing your story with people!


I really do hope more people get to know about this condition, I actually haven't heard about it until now, just so you know, so thank you for informing me about POTS. And I just saw the other chronic illnesses you listed as having, and I have to say that you really are durable and staunch going through life with all of this, you're really championing your way through, if I may say so, with no cliches intended. I really hope keeping up with the cost of all of this wasn't and/or won't be a big issue in your life. However, what really matters the most, and you seem to be of that opinion as well, is that you're happy in life, that's something that everyone stresses, and I definitely can't help but agree.


Seeing how you said that climbing used to be your everyday norm, and made you happy before, I really hope that you found, or that you'll find in the future, something that's there to occupy your mind and make you happy on a daily basis. I honestly wish you the best in life. Even from one brief video like this, it's easy to notice that you're almost certainly an amazing person to talk to in real life, and I hope you're happy with people that surround you in your everyday life, and that you don't have issues expressing what's on your mind to people around you, because you've shown here that you can be a great advocate and a spokesperson for your cause.


And yes, feel free to talk about anything that sets your mind and heart free, even if it doesn't get a lot of attention, I hope it means something to you, even if at most a handful of folks care to properly listen to you and respond. At no point should your physical limitations impact your emotional or mental status, you certainly don't deserve that. There's times during the day when a person needs to let things out, even though there's not necessarily someone around to listen to them. So I know I try my best to meet and listen to people no matter where they're from, because I personally know that listening can not just make someone's day, but save someone's life.


So yeah, I hope you're happy in life, I really do. I hope that normal life activities aren't and won't be a problem for you in the future, but no matter how unfortunate some things may become, I always admire people with positive outlooks on life and I believe that's the way to go. It may be too risky for me to say that I wish for you to compete in climbing again, so most importantly I'll wish you health and well-being. It's was definitely a pleasure getting to know you, your story, your anecdotes this way. So I hope you make the most out of your life because you definitely have great potential to change some people's lives. Keep fighting, keep expressing yourself, and keep educating! <3

[coffeesweatersbooks]

I related to this video so much!! My heart goes out to you!! Nobody except ppl who have gone through it know just how horribly terrifying and painful and experience it can be! (Especially with many doctors blaming real symptoms on anxiety, when u waited months to see them.) and the spending months at a time stuck in bed staring at one spot on the wall because you head is so foggy and you have 0 energy. It’s like getting stuck with the flu but add ✨fainting✨! I really wish there was more awareness out there for us, we deserve more research! It’s a lonely experience.. u lose friends and years of your life! And the little things you did without thought have now become daunting... I found it made me more thankful for all the little things in life... and though I don’t know if or when I’ll be better I’ll continue to put it in all the work I can and live my life to MY fullest in my current condition! Sending love and hugs 🤗 💕!

[coachsteve]

My 24 year old daughter also has POTS... She has had it since the age of 12.... we are praying 🙏 that she will outgrow it... she can hardly function on a daily basis

[hannabuehler]

I know this is an older video but thank you for making it! i have been experiencing increased dizziness, heart palps, blurred vision, digestive issues, shaking, etc. for the past few years and juts assumed this was all normal! i finally made an appt. with my doc to talk about it (after she had dismissed my dizziness the past few visits and juts said it was my anxiety or that i needed more salt). but i know that since i haven't been able to hike or run as well or as much as i used to due to these symptoms, so something is up! they definitely fluctuate daily, some days are worse than others (which makes me think its not POTs but ill still ask haha).

ill send good vibes to all you warriors out there and thank you again Rachel for putting yourself out there to educate those like me!

[whitheeres]

I am readjusting to new levels of illness this year & also studying at all all over again. Thank you for sharing your story with us! God bless!