Day in the Life With POTS

Here's with a day in the life with POTS and dysautonomia is like. POTS = postural orthostatic tachycardia syndrome, which is a blood circulation disorder that leads to symptoms like dizziness, nausea, fainting, pre-syncope, blood pooling, & so many other symptoms.

The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.

MORE INFO ABOUT EDS:
MORE INFO ABOUT POTS:
MORE INFO ABOUT GASTROPARESIS:
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:

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#POTS #compression #dysautonomia

[IzzyKDNA]

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[EE-xoqr]

The fatigue that comes with pots is freaking relentless! Lying down throughout the day is essential. I wish more people knew about and understood this condition, because it can feel so isolating xx

[samanthajo]

This helped me feel so normal..

I often find myself gaslighting myself. I get sick of the constant array of symptoms because I KNOW how I sound to others. I sound like a nut / hypochondriac. But I'm not. I just have SO much going on at all times.

As complex as it sounds from the outside, imagine how chaotic it is in our heads and all the things we aren't mentioning because we're still working out what's going on, what's causing it, which illness and what we need to do to fix it.

[karenpawson-smith]

Thank you for including the "breathlessness" in your video. This is the symptom I have been most gaslit by PCPs and cardiologists about. I have repeatedly been told it is anxiety or my imagination and it is NOT a symptom of POTS. So THANK YOU for showing me that you get out of breath exactly the same way as I do!! Usually its in the morning and/or getting out of bed for me.

[FoxRogers]

I have hEDS and POTS (and Hashimotos, Lupus and MCAS) I am 42, most of these were not diagnosed until the last 5 years, I've just been treated like a hypochondriac or ignored since childhood. I just power through as best I can. I am really glad that more doctors are recognizing and treating things. My kids have hEDS too and POTS too. Thank you for sharing.

[wyxitt]

I've had pots since I was 12. I'm turning 23 this month and doctors are NOW testing me for it. My whole life I've been shamed, gaslit, and ignored about my pain. I groan at the idea of them ever saying "it could be anemia" for the 100th time. Or anxiety, oh lordy. Seeing your video and how you go about it is reassuring to me in some way. Thank you for showing us your world

[xcluelessbeautyx]

I washed my hair today and am just gonna be down for the rest of the day. Thank you for sharing, it makes me feel less alone to know that showers are other people’s worst enemy too.

[lily_of_the_valley]

Ok literally I relate so much to the whole “you just need to get down” thing! For years I just thought it was normal to feel like you’re about to faint after showering or exercising, boy was I wrong! I’m still fighting for a diagnosis, doctors keep saying it’s just anxiety. It can be so frustrating when medical professionals won’t hear you out.

[LauraStarchild]

The research I've done has shown that there is a definite correlation between cervical instability and Dysautonomia - It has something to do with the vagus nerve getting pinched in the neck area. I have moderate-to-severe cervical instability, including a tipped atlas and loss of curve in my cervical spine. My neck slips out of place a lot, even sometimes during sleep because the muscles are so relaxed. It's quite painful but I never knew it was related to my autonomic dysfunction until I started looking deeper into my EDS. Which is how I found your channel too. 💜

[laurafauna]

I'm so glad you kept in the breathless bits in the video :)

[Mii]

I’m 26 years old, and have been dealing with many of the symptoms you’ve described (no coat hanger pain fortunately) since I was 12 years old. I always pushed through the discomfort because I was worried about other people judging me, including my family. When I tell them I can’t help them with something because I’m feeling weak enough to faint, they roll their eyes. Well, I’m having an especially “potsie” (quotes because I don’t have an official diagnosis) weekend. I felt really weak yesterday (Saturday) and I only got weaker as the day went along. It’s now Sunday, and I’ve been in bed all day, only getting up to feed the cat, use the bathroom, and keep getting gatorade and water from the fridge. This is the worst I’ve felt in a long time. I finally have a doctor’s appointment in a couple days to start the process of getting an official diagnosis. I honestly feel really emotional about this, frequently struggling to keep up with everyone else. To finally get a diagnosis to validate what I’ve dealt with for so many years… it’ll be unfortunate, but I just might cry tears of joy.

[amnestor]

I have POTS, too, and the fatigue and struggle to shower is REAL Great video! 💕

[julipritchett]

I recently got diagnosed with POTS and started a beta blocker and I feel like it has given me my life back! I still have fatigue but I can take showers without feeling exhausted afterward. It does make my blood pressure kinda low but I can deal with that because overall I feel so much better!

[conniegarvie]

I know exactly what you're saying about the fatigue. People think if I take a nap, it will go away! Oh, how, I wish!

[l.m.mulvihill]

I cried just watching this video. I have felt so alone and it's tough. People around including family don't understand how much it takes to just bath. A simple thing right? No, it's very difficult. I'm so glad I ran across your channel. Thank you 🙏❤️

[thebeckyboopshow]

Wow, it was really good to see the breathlessness - I get that too! I used to try to hide it from people but now I just let it happen. It’s taken a lot of adjusting

[Billie_bo_baggins]

I found your channel when I first suspected I had EDS. A trip last week to the ER left my doctors and nurses highly suspect of POTS as wells. It was a (weird but good) comfort to find a recommendation on your video for POTS. I have had to monitor my heart rate closely during workouts (I love cardio) so I don’t go over 160. This past year has been especially hard, but I’m glad I found your channel as I navigate all of my increasing medical concerns. Thank you so much for the time and energy put into these videos. It means so much to someone who is just now learning that I was never lazy and have just had chronic illness the whole time that was never seen and always misdiagnosed.

[rpjgkwd]

This is my life for the past 10 months. I can relate so much to the shower issues and fatigue after doing house work for only a short amount of time. Hope we all get better!

[vickiswanton]

I have POTS only mildly, but it was quite a few years where I was telling people that walking (pelvis/leg pain aside) was fine, as long as I keep moving - I feel okay, but I can't stand still. I start to feel unwell. And it used to garner raised eyebrows. I also got really confused about sweating when I got out of the shower. I always felt either overheated or unwell when in or after getting out of the shower. Especially if washing my hair as well. I only really understood what was causing it (aside from general unfitness, being overweight etc) when I got a smart watch. My smart watch gave me a really good insight as to what was going on. I've always known my heart rate was at the upper end of average and my blood pressure was at the lower end of normal, but I didn't know how much it changed when I was standing. The less I move, the higher it goes. I'm so glad I've worked out what it is though. I know over 130bpm, I start to sweat. Over 140bpm I get a strong urge to sit down (can't explain it, but I just feel like I need to sit or I'll drop). Over 150bpm I begin to feel really unwell, and over 160bpm I start to feel incredible nausea. I suppose one upside of COVID is that we got a pulse oximeter and I was able to keep more of an eye on what my heart rate was doing. I'm really appreciating see what else other people deal with who have EDS/hEDS/HSD. I've felt like such a hypochondriac or nutcase for having such bizarre and seemingly (but obviously not in the context of EDS/HSD) unconnected issues.

[avrilhodge]

I can totally relate to this, especially the showering. I’m at the point where I spend most of my time having to lie down. It’s frustrating. It is very debilitating. If I tried to do bike or treadmill, I’d pass out. Thanks for sharing your experience so I can show others what I am dealing with.