Play-by-Play of a POTS EPISODE // Is POTS just ANXIETY?!

What happens during a POTS Episode? Many things! This is the story of a "panic attack" triggered by bending over. Too many POTS patients are brushed off as Anxiety or Panic Disorder patients, when there is really something different underlying the symptoms of POTS episodes. It's not "just anxiety!" I made this video to share my POTS episode symptoms in order to help the diagnosis process along for other patients, or to provide reassurance for anyone who may need it. Please share your POTS story in the comments! But remember, you need to check with your doctor if you think you may have POTS, because it could instead be something VERY SERIOUS or LIFE THREATENING. This is not medical advice. I'm only a patient.

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Before I had treatment through POTS Care, it was a long road (if you are interested, I did a POTS Care review in another video). When you have a condition like POTS, you need to learn how to advocate for yourself at the doctor; and there are several steps to that process. At first, I didn't really even know what happens during a POTS episode or what POTS is...and neither did some of the cardiologists, neurologists, or primary care physicians that I was seeing.

Another issue is that women are often misdiagnosed with anxiety disorders, which leaves many women wondering...is POTS just anxiety? Since POTS symptoms do include heart irregularities it is very frequent for doctors to think POTS symptoms are simply anxiety. To be fair, can anxiety cause similar symptoms? Yes! But, is a POTS episode the same as a panic attack? No! So, if you are experiencing POTS-like symptoms, you have probably asked yourself "is it POTS or anxiety? How can I tell the difference between POTS and anxiety?" In my case, I just knew.

As always, I am just sharing my personal experience and I encourage you to do your own research and consult with your medical professionals. But it's also important to learn strategies for advocating for yourself to the doctor, and advocating for yourself in medical care more broadly. I can't tell you how many symptoms my neurologist missed at first, that were caught later on when I found a doctor who listened more carefully and asked questions. You need to find a doctor who includes you on the investigative team, because they are the medical experts but you are the expert on your symptoms and body.

Love and hugs from me to you... we will get through this, and there is hope.

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SOME PREVIOUS SERVICE DOG VIDEOS…

SOME POTS VIDEOS…

The LATEST: My Spinal CSF Leak Evaluation (2022)

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NOTE: Though I talk about medical topics, nothing on my channel is meant as medical advice (for all statements, past or future). I am a patient sharing my personal experiences, but I am not a doctor nor am I medically trained. My channel is for entertainment and community only.
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[Micro_Manage]

This is hilarious. The role-play was immaculate. If you have pots, you have been through this several times she told not one lie.

[ivyrodriguez]

You are spot on with my symptoms!!! And yes all the time “it’s a panic attack” no I don’t feel anxious I am getting anxious and panicked because of these episodes!!!!

[emmalineistired]

I have POTS and some sort of neurologic disorder.
I’ve had anxiety in the past, and used to have attacks frequently. Anxiety attacks for me were always hyperventilating, lightheaded, shaky, tingling in arms and legs, and crying. My heart rate goes up but I don’t feel it through the hyperventilating and shaking. It can be subtle for awhile as it starts, then gets bad, and when it’s over I’m emotionally tired but feel better.
Pots episodes are feeling off balanced, vision blacking out, heart palpitations, fatigue, severe brain fog where I can’t form sentences or process new information and I can barely speak. Then that makes my walking and coordination so much worse. I feel awful and continue to feel awful.
Big difference

[HeatherLuecht]

It was recently explained to me that POTS is a panic attack -- but society has a fundamental misunderstanding of what a panic attack is. An anxiety attack is where you get yourself freaked out -- reasonably or unreasonably. A panic attack is when something happens in your body that your autonomic nervous system doesn't know what to do with, and therefore your ANS freaks out. POTS is genuinely your ANS having a panic attack. And yes, just treating with anxiety meds is pointless. When your blood pressure tanks, and your nervous system can't find where the blood in the body is, the ANS is *supposed* to freak out. I did want to mention, of the three general types of POTS (and yes, I realize they overlap and are not a perfect schema) but in the really rare version that has a genetic component and runs in families -- also you experience a spike in POTS symptoms when you lay down. I cannot tell you how often myself or my daughter have spent ages lying in bed waiting for our heart rates to slow down enough to try to sleep. Both of us also have h-EDS. I was diagnosed with one of the more severe cases of Hyperandrenic POTS on record. My worst ever diastolic was 29. My daughter's lean test didn't quite meet the requirement of 40 point drop, but her tachy was severe enough they put her on beta blockers at 17 yo. In case anyone is reading this, and experiences that spike when they get up AND when they lie down, and is doing everything they are supposed to do and still not getting better, its worth knowing that the hyperandrenic version has a genetic component. There's too much norepinephrine in your bloodstream and not enough norepinephrine doing it's job as a neurotransmitter in your synapses. The gene was identified by Johns Hopkins around a year ago. And this version requires perscriptions to manage. You cannot exercise or nutrition or life-style change your way out of this version of POTS. It's your dna. This also tends to be the more extreme version of POTS. Ppl who pass out when they sit up, Ppl who have a supine pulse of 130 etc. So just as an fyi if anyone is doing everything they should and still not improving its something to consider.

[crazyfamily]

I have pots and migraines. For years I got that same thing. It's a panic attack! Um, no, I'm sitting here laughing with a freind (in the ER IN MY 20S, WITH MY HEART RATE SPIKING) I'm not panicked. But I don't feel well. Now, in my 40s, I've done so much research, met with many specialties, until I found the ones that would listen. Thanks for sharing!

[robinhahnsopran]

So glad you mentioned that you can have the same symptoms but a different underlying condition! I have been having POTS-like symptoms for about a decade, but a few years ago I found out that I have a totally different type of dysautonomia which causes 19, 000+ premature ventricular contractions of the heart a day. Recently my cardiologist even discovered that they increase on standing up - just like a POTS reaction! That means I get that chaotic, oh-no feeling when I bend down, as well as lightheadedness and wibbly vision, some tingles, temperature fluctuations, and nausea. But what's happening to me instead, it turns out, is that my heartbeat is actually interrupted, not racing!

Tl;dr the disclaimer is really valuable. I struggle with weirdly feeling, like... undeserving of my space in the EDS community because I don't actually have POTS, but my symptoms and experience are just as valid, and I love that you gave space for people to feel seen in your description of your POTS experience, even without POTS. :)

[ashmariedunn]

Also, as I’m getting to the part of this video where you get emotional, I just want to hug you. This is me too. Every day is a battle. My daughter asks me a lot “are you gonna die from this?” and I tell her I have no intentions of letting this take me down. Thank you for your story ❤️

[casthelass]

Smashing the like button so hard right now. I have POTS and generalized anxiety disorder. (No migraines or cranial leak) First of all, sending so much support and love to you for the traumatic experience of doctors acting like you're just a nervous hypochondriac. I have had the same scenario at the ER and a decade later still feel so mentally messed up about it.
Personally I do not experience any weird sensations in my ears or sensitivity to small head movement. (My ears do ring if I'm about to faint though.) The only facial symptom I have when I start getting potsy is that my eyes cannot focus on anything. I get that chaotic feeling too!! And the tops of my feet feel numb every morning when I get out of bed! Lol. My compression socks really help.
I think because I'm so used to fainting, feeling lightheaded, hot flashes, brain fog etc., I don't seem to experience much anxiety when my POTS is flaring up, unless I'm in public which is the worst thing ever!😭 Can confirm, my panic attacks have always been separate from my POTS, other than my heart rate obviously goes way up and I feel like poo.
Your videos have been so therapeutic for me, I feel so seen for the first time. I have tremendous respect for the way you have learned to live with your pseudotumor c. on top of it all and share your experiences on here and I am so glad you have your cranial diagnosis after so long. I am excited to look into POTS Care package because of you! You rock Jen!!❤

[whitney]

Thank you for being so vulnerable. It truly touched me. I cried with you.
I understand and empathize with so much of what you describe. So many of my symptoms are similar. The sudden change in ability to tolerate external stimuli, hot chest, extreme brain fog, can’t think or make decisions, shaking…feelings that mimic fight or flight.
I got POTS overnight & thought I was absolutely dying.
I have a skit that I did as well mimicking an experience I had when I went in for my symptoms.
I understand how hard it is to talk about. These episodes are so scary in the moment and you dread the next one sometimes.
Hang in there and thank you for your bravery & sense of humor as well :-)

[Supernova_]

I feel you. I’ve also had nights where I wasn’t sure if I was going to wake up in the morning. It’s terrifying when you feel like you’re dying but you don’t know why, and doctors won’t believe you. I’ve had POTS symptoms for the past 20 years. Everyone told me “It’s just because you’re tall and thin, you’re dehydrated, you’re anorexic, you’re vegetarian, you have anxiety and panic attacks, you’re doing this to yourself, you’re faking it”. I just want to be a healthy young adult. I have an appointment in a few days with my doctor to hopefully get my health on the right track. I hope that she not only listens to what I have to say, but actually hears me.

[alishaaviles]

literally have every single symptom you describe my migraines start with sinus pain thank u for this information

[ashmariedunn]

Newly diagnosed here. My first symptom was the tachycardia, which started back in October. It freaked me out but it was manageable and I was still fully functioning. Now, I’ve been in bed more in the last month than I’ve ever been in my life. I’ve had anxiety in the past, even panic attacks. I would take that over what I’m going through now. It’s awful. Yesterday was my daughters 10th birthday and I could barely function due to fatigue and pain. Of course, it takes a toll on my mental health. But I’m trying my best and I won’t give up.

[xoalyxo]

Newly diagnosed here. Also have a + ANA for years and am undergoing work for autoimmune disease. I have yet to find a video more relatable than this one! Thank you so much for sharing! I have been dismissed by everyone during these episodes just being told it’s anxiety, especially given that I have a history of anxiety and panic attacks. However, my “anxiety” feeling during a POTS episode is very different and can happen even when I’m not feeling any stress, so it never made any sense. Mine typically start with tachycardia which is then followed by dizziness/lightheadedness, weakness, body aches, major shortness of breath, and confusion. Recently, things have gotten worse/happening more frequently. I was told I have a RBB a long time ago (though this shouldn’t cause any problems) and possible WPW as well. The cardiologist in my town are not great and give me the run around. It’s the “you’re so young and overall healthy, so it must be anxiety”. In a few weeks they are inserting a loop monitor. I drinks lots of water and eat relatively healthy. I can’t be the mom I want to be because I’m always exhausted. Now, I fear driving because I worry these symptoms will happen while I’m driving. I’ve tried beta blockers but they drop my BP too low. At a loss.

Also, I was hospitalized for my heart a couple years ago and failed two types of stress tests while I was there. They wanted to do a heart cath, but I declined. Being dismissed for so long has caused me to lose faith in healthcare and now I get a lot of anxiety around doctors.

[chethanadkumar]

@MommingwithMigraine I cannot even explain the relief I experienced just listening to you describe exactly what I’ve been through for 12 years now. Doctors have gaslit me for over a decade, making me look like the crazy one; so I ended up becoming a doctor myself just so I could sound more convincing. My battle with IIH and POTS has been a constant struggle but what’s more exhausting is having to explain the pain to a bunch of “medical degree holders” who treat you like a delusional person who’s trying to just get attention. Delaying the treatment we desperately need only becoz these doctors have trust issues(malingering is their favourite word!), branding us as “hypochondriacs” comes to show how the medical fraternity has failed us miserably! I’m so glad people like you are here to put out your stories, reassuring we’re not alone.

[rozie_simson]

I've talked to 6 different doctors and they all said it's anxiety but I finally got a good doctor that diagnosed me with POTS

[Izamota-qv]

I ve had episodes where I thought I wouldn't wake up if I went to sleep - One particularly terrifying episode I called my doctor and he told me I was just having a panic attack - this was after knowing I have SVT but he ruled out POTS due to a lack of bloodpressure change on standing ?? Wrong criteria, Doc

The next day I had severe light sensitivity and motion sickness, was dizzy, nauseous, and anxious - I couldn't look out the car window at 5 mph without getting sick and spinning

Odd thing was - I had a regular heartrate and blood pressure the entire time so far as I could tell

I was diagnosed with Mobitz, vagal dysfunction and potentially POTS on top of SVT by my new doctor a few months later - the skipping beats from Mobitz made heart monitor not register the tachycardia and set off the entire episode

I know this is hard for you to speak about but I immensely appreciated hearing you speak out and learning I wasn't alone in this!

[nmelville]

Thank you so much for this video! I have recently been told I might have POTS after years of going to doctors with no results. I started to convince myself I was a hypochondriac but the symptoms felt so real.

I have a lot of inner ear pain, ringing, and sudden “stuffiness” that causes me not to be able to hear. I also will have a lot of mucus, especially that causes pain on the roof of my mouth. I never thought those could be related somehow.

Of course I also have the light headedness, fast heart rate, tight chest, tingling feet and hands, a shot of wooziness that goes through my head, stomach problems, brain fog, panic that starts after the symptoms come on, extreme sensitivity to loud noises after an episode starts, etc.

I’m going to look into this POTS care team you mentioned and see what else I can learn. This video was extremely helpful. Thank you!

[TylersTrying]

Hey, I have an anxiety condition. I was certain for a long long time that I had ADHD or was on the autism spectrum or had a genetic mutation or a sleep disorder or SOMETHING. I finally got a diagnosis for OCD. Complete shock to me. I don’t wash my hands a million times a day or count stuff or have tics, so I was skeptical. But I took the doctor’s advice anyway and did the outpatient therapy program they suggested. I started in December and finished at the beginning of February. Honestly, I am a completely different person now than I was four months ago. I feel great, both my brain and body. Like, I had all sorts of weird physical symptoms and intense unexplained pain, but once I got my head right (right-er at least), all that stuff went away. I wish you the best.

[mamacathy]

I have POTS, fibromyalgia and hEDS, plus have autism and ADHD. I have digestive issues, tachycardia, weakness, dizziness, nausea, fatigue, coat hanger pain, shortness of breath, tingling, dehydration, leg pain.
I was diagnosed with anxiety and my concerns about it being POTS, were initially dismissed. I totally understand not wanting to go to the ER, and, for the same reasons.
It took about 7 years to get my diagnosis. Some times, I literally cannot stand without triggering my symptoms. Sitting doesn't even help. I have to lie down.

[RowesRising]

Yes, sometimes when I move my head and it feels like I’m in a fish bowl or that the world around me is going a million miles a second😅
Also I’ve been told by multiple physical therapists that I’m hyper mobile. I also suffer recurring acute pancreatitis unrelated to alcoholism or gallstones- it’s a mystery, stomach pain and episodes of nausea and vomiting, as well as ice pick headaches. I have hashimotos.
The very first time I remember passing out, I was 13. I woke, walked into my brothers room and sat on his bed to wake him up for school. Got up to walk out and tried to make it to my room to land on my bed- as I was passing out I yelled “I’m passing out!” And my brother heard me, walked in to see what the commotion was, I was on the floor with a rug burn on my chin 2 days before prom. I fainted and my chin caught me on the carpet. No one took me to a doctor or wondered why Katie was passing out.
I just had my tilt table test today and it was uneventful. I’m 41 and have episodes of “panic attacks” where my body goes numb, I nearly completely blackout, and I feel like I’m dying. My mom died of a brain aneurysm so the first time I had a “panic attack” I was convinced I was dying like her. I was alone with my small children. It was really scary. Went to the ER an hour or so later when my husband got home- still convinced I was dying. But all was normal at the ER and they said panic attacks. I have near fainting episodes so much I say “I’m blacking out” and my kids come help me stay upright so I don’t hit the floor and typically I don’t completely black out. I thought all of this was normal so I’ve been gaslighting myself for 30 years. I feel like shit. And I’m in pain every day either my stomach or my low back because I hurt my back at 16 and have never been pain free since. Hope everyone is feeling better more days than not!! 🌻🌻🌻🌻