Living with POTS Postural Orthostatic Tachycardia Syndrome

Рет қаралды 22,342

Күн бұрын

Dr. Dawn-Elise Snipes is a Licensed Professional Counselor and Qualified Clinical Supervisor. She received her PhD in Mental Health Counseling from the University of Florida in 2002. In addition to being a practicing clinician, she has provided training to counselors, social workers, nurses and case managers internationally since 2006 through AllCEUs.com 📢SUBSCRIBE and click the BELL to get notified when new videos are uploaded.
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TIMESTAMPS
00:00 Intro and how common is POTS or postural orthostatic tachycardia syndrome
01:55 Somatic Hypervigilance
08:50 Tips to deal with Physical Symptoms of POTS temperature regulation shakiness fast heart rate tachycardia
19:50 Difficulty sitting standing walking reasonable accommodations
24:45 Abdominal pain, blurred vision, headaches reasonable accommodations
28:30 Exhaustion reasonable accommodations tips to survive
35:35 Emotional and mental symptoms concentrating, grief, anxiety, guilt
44:20 Stress management with POTS
47:40 Relationship problems and Invisible disabilities

Пікірлер: 110

@DocSnipes 9 ай бұрын

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@sydneyjudd4882 Жыл бұрын

After watching all 55 mins, I have never felt so seen. I have struggled with POTS-like symptoms for years, have have been constantly turned away by doctors and even my parents at times when I am experiencing them. I hope I will be able to be diagnosed soon! Working is so hard on me and I feel so guilty asking employers for accommodations without anything official! Thank you for posting this, I honestly needed this to remind myself that Im not just over reacting or making things up🥹

@samanthaaguilar6033 Жыл бұрын

Hi Sydney, I also have POTS. There is a “tilt table” test that you can have done to officially diagnose it if you haven’t done it already ?

@nancygiordano2886 Жыл бұрын

I feel the same way I have not been diagnosed yet but my endocrinologist said it is a possibility. I’m trying to get him with a cardiologist and get a tilt table test done as well. I am fortunate enough that I am already on disability, however day-to-day activities are a monumental task. I hope you get A correct diagnosis soon.

@laurenbidigare7044 2 ай бұрын

Even though my family makes me feel like I’m making things up

@user-id4zm1bh3m Күн бұрын

I can truly relate.

@pouranszekely_kiraly4764 Жыл бұрын

It really feels someone is finally explaining all my feelings i can cry 😭

@DocSnipes Жыл бұрын

Thanks for watching.

@savannahsbaiti309 Жыл бұрын

I've had post viral dysautonomia/POTS symptoms. Have not been formally diagnosed yet. My PCP suggested it, saw a cardiologist and he dismissed pots but said my autonomic nervous system is out of whack. We did not do the tilt table test. I have another appt with a neurologist, to find more answers. I have been recovering from covid for almost 2 months. I have had maybe 5 good days. Most of my days, I thought I was going to die. I am still tachycardic (79-100 at rest-1 107-133 bmp standing) thats what I have clocked when I check. I try not to do that often anymore as it just makes me anxious. I use compression socks daily, drink a ton of electrolyte drinks, and always have a salty snack on hand. Some days I can go out to go shopping, etc. But I dont feel well pretty quickly and always make sure I have someone else with me. I have yet to do much alone. It freaks me out! Thank you for this video. I am so thankful to not feel alone.

@JA99 2 жыл бұрын

Thanks for this! I just got diagnosed with this as part of my long covid. Still learning how to adjust.

@MidwiferyWisdom 2 жыл бұрын

Thank you so much! You’re such a compassionate educator

@edgreen8140 2 жыл бұрын

Autonomic dysfunction is difficult. Photophobia, loud sounds which are at normal level. Thanks for doing this one.

@matthaines8136 Жыл бұрын

This developed after getting sandwiched between two Cars, I forgot about it and remember thinking I had autism

@MoncureCoyote 2 жыл бұрын

You can take anything you medically need on a USA flight including food and water. The airlines know this but usually passengers don’t.

@shannonbraun5038 10 ай бұрын

This is by far the best video for pots that I have found!!! I feel so validated. I can't thank you enough for this video

@DocSnipes 10 ай бұрын

You’re most welcome. Glad to be of service. Thank you for watching the video

@nancygiordano2886 Жыл бұрын

Thank you so much for sharing this video, I have been suffering with symptoms for over a year! I’ve been to all kinds of specialists. My endocrinologist mentioned POTS and I am trying to get in with the cardiologist so that I can get a tilt table test done. I cannot give you enough stars for your video. It clarifies and put me at ease that everything that I have been feeling anD experiencing and having to deal with is legitimate!

@DocSnipes Жыл бұрын

You’re so welcome. I am grateful to be of help and I appreciate you watching the video. I am sorry to read you have been suffering with symptoms for over a year.

@TristineBarry 2 жыл бұрын

Hey most amazing Doc Snipes and team/fam! 🤗

@DocSnipes 2 жыл бұрын

@sarahl795 2 жыл бұрын

I have pots and someone sat next to me during my final exam that was wearing heavy cologne, it completely distracted me and causes respiratory issues. I didn't wanna be weird and raise my hand to move in a room full of 100 people. We aren't allowed to get up during the test either. I wish people would be more mindful of those around them. People working in hospitals aren't supposed to wear perfume either yet some put a ton on.

@sarahl795 2 жыл бұрын

I also have to put my phone brightness all the way down and keep night shift on 24/7. florescent lights make me feel disoriented. Thank you for spreading awareness with this video!

@DocSnipes 2 жыл бұрын

That is awful. Sorry you had that problem. Thanks for watching. Wishing you peace, health, and happiness.

@rubydy3011 Жыл бұрын

Do you have MCAS as well? Because this is what causes my problems with scents.

@TristineBarry 2 жыл бұрын

My hubby may have this...thanks for the edu AZ I need this. 😍💯🦋🐥

@DocSnipes 2 жыл бұрын

Sorry to hear. Hope the video had helpful information for you.

@vonniejellyhead 7 ай бұрын

Watching this has been amazing. I've been thinking for some time that I may have POTS but didn't know that many of the symptoms mentioned (and which I suffer from) were part of POTS. It all makes sense now! I am going to make a list of my limitations as suggested and use the tips you have given for managing symptoms. Thank you so much for making this presentation.

@DocSnipes 7 ай бұрын

You’re most welcome. Thank you for watching

@AubernsRevolution Жыл бұрын

All of these symptoms! Just finding out it's dysautonomia/pots due to CPTSD. Been looking for an answer to why I feel like I'm dying

@DocSnipes Жыл бұрын

I appreciate you watching

@dddamaged7501 2 жыл бұрын

Developed fibromyalgia over last 4 years from trauma. Have noticed it has made my POTS worse.

@DocSnipes 2 жыл бұрын

Thanks for sharing. Wishing you peace, health, and happiness.

@DREAMSQU33ZE Жыл бұрын

I have had this since I was 10! They told me it would go away. Well 21 years later and I still have it 😭

@DocSnipes Жыл бұрын

I am sorry about that and I appreciate you watching the video

@AngelasAdvice 2 жыл бұрын

My daughter was diagnosed with this at 15; she is now 28. Thanks for this.

@TristineBarry 2 жыл бұрын

Hey AW

@DocSnipes 2 жыл бұрын

Sorry to hear. Thanks for watching and commenting. Best wishes to you both.

@Mamaohhh04 Жыл бұрын

What we’re her issues? Is she better? I have just developed the blood pooling in my hands and after a hot shower my hands looked so scary I almost fainted. It was my first encounter with it and had no idea of it… I went into my pots group to ask and they told me. Geez that was so scary

@deshawnredding Жыл бұрын

@@Mamaohhh04 it can’t kill you at all keep that in your head💯💯stay active btw to

@vynedvyne59 Жыл бұрын

Many thanks😊

@nirmaladrieskens4338 2 жыл бұрын

Great video ❤️❤️❤️

@DocSnipes 2 жыл бұрын

Thank you!!

@ericarichardson2983 2 жыл бұрын

When you said chalk on the chalkboard a chill went through my spine at just thinking about it 🥶😨

@DocSnipes 2 жыл бұрын

:) Thanks so much for watching.

@Roxy0405 2 жыл бұрын

What about those with autonomic dysfunction without POTS? 🤔 Most people assume we ALL have POTS just because they don't realize it's not automatically included in all cases of autonomic dysfunction cases.

@Whitewillow221 2 жыл бұрын

I have Dysautonomia, POTS, I have been part of 4 studies with Dr Raj who’s an expert in this area. (Can search on KZfaq for his videos) Many who have POTS can have Ehlers Danlos Syndrome which I have as well. Expert tips: drink 3-4L of water daily, cross legs upon standing to prevent blood pooling in legs, compression stockings, stress management is key, electrolytes in water. The symptoms and struggles you are describing are more of Dysautonomia then just POTS. When I’m listening to your video I feel you’re describing Dysautonomia which is what Pots falls under, many of the sensory issues etc are all that and not POTS at all. Hope you can find info to help listeners/patients/family discover it’s not a POTS issue but Dys **I don’t agree with wearing a mask, I haven’t worn one and it triggers breathing issues. Not safe at all

@DocSnipes 2 жыл бұрын

Thanks for sharing. I encourage differential diagnosis by an appropriate medical doctor for anyone who feels that fit this set of symptoms.

@Mamaohhh04 Жыл бұрын

How sn you prevent the pooling in hands

@nickymartin9067 2 жыл бұрын

Can you do one on Orthostatic hypotension ?

@romaheart1361 2 жыл бұрын

My son who has ADHD has these traits as well. Very interesting!

@irenicbookclub2088 2 жыл бұрын

Get him checked for EDS -> ADHD, POTS & EDS, with MCAS can be all related

@romaheart1361 2 жыл бұрын

@@irenicbookclub2088 tks!

@sherimead4095 6 ай бұрын

We’re in the process to figure out if our daughter has Pots. She has most of the symptoms. She has trouble with major dizziness in mornings and almost fainting. She gets really close but hasn’t fully fainted. Sensitive to heat, physical activities, gym class has been rough and work. Always tired and not feeling right. She’s been getting all of this since about 14. 16 now. Was sent to a cardiologist for a tilt test but he never did it. Just said she has low blood pressure and put her on salt pills. Which helped slightly. She’s now on Midodrin. Which helps a little. He said tilt tests aren’t always accurate. But never really mentioned Pots to us. It’s been only recently we’ve heard of it. We’ve been doing some of the reliefs for Pots without even realizing it for awhile. And now that I see the sensory sensitives too I believe she may have it even more. I plan on asking for her to be tested. Which I’m not sure would be the cardiologist or a neurologist.

@DocSnipes 5 ай бұрын

Thank you for watching and for sharing. I am sorry that your daughter is struggling with such symptoms

@citlalie9791 Жыл бұрын

This is me 💯 percent 🎉 I got my POTS from Sjogrens autoimmune condition 😩

@DocSnipes Жыл бұрын

I am sorry about that and I appreciate you watching the video. What did you find most useful from it?

@jewellevy Жыл бұрын

Another reason to not keep your spices above the stove is it dries them out and ages them

@DocSnipes Жыл бұрын

Thanks for watching

@foxywhitetip7387 2 жыл бұрын

Could also be oxalate issues

@Whitewillow221 2 жыл бұрын

Research and report: Dysautonomia. It’s what is described in this video not POTS alone. Hope it can be clarified

@irenicbookclub2088 2 жыл бұрын

Yessss

@DocSnipes 2 жыл бұрын

Consult your medical doctor for differential diagnosis. Thanks for watching.

@shayharper8953 Жыл бұрын

Could a strange taste in the mouth occur when having what I call a "dizzy spell"? Maybe a metallic taste?

@user-di6bw9xg5j Жыл бұрын

У меня так всю жизнь, возникает металлический привкус и даже привкус крови

@annettezaccaro1994 Жыл бұрын

Can POTS lead to heart disease or heart failure?

@oyku836 Жыл бұрын

I'm 21 years old.I don’t smoke or drink alcohol. For 4 months I have heart palpitations daily and sometimes I feel pain in my chest in left area. and I have pulsing sensation in my whole body it’s literally so severe that I’m struggling to sleep at night. I’ve gone to cardiologist. I had 24 hour holter test, blood tests and they said everything is normal. I also don't have thyroid problem. doctor gave me propranolol. I’m taking the medicine well but the pulsing sensation in my whole body is still the same. it’s in the rhythm with my heartbeat even the times when my heartbeat is in normal rate. I feel this sensation all times but it is more predominant when I’m laying down.and I also feel more bad when I woke up in the morning. when I go from laying position to standing I feel fatigue feeling. I’ve never fainted. Could it be pots?

@fabiohamann3250 Жыл бұрын

Did you have covid or take the vaccine? I have the same thing

@oyku836 Жыл бұрын

@@fabiohamann3250 I had covid in 2021. And I have only 1 dose of vaccine

@fabiohamann3250 Жыл бұрын

@@oyku836 I'm pretty sure i got it from covid. I had a mild acute phase and the lingering symptoms started 2 weeks later. The hell!

@oyku836 Жыл бұрын

@@fabiohamann3250 I’m not really sure about mine I had covid in 2021. And this symptoms started like May 2022

@toddboothbee1361 Жыл бұрын

Doc, what do you do when your heart rate is slow/brady instead of fast/tachy? Will vagal maneuvers work for this too? Seems counterintuitive. Thanks!

@jewellevy Жыл бұрын

Yeah. My heart rate is 33 at rest.

@drewdrilak5853 8 ай бұрын

You probably need a pacemaker

@janetandrews1306 Жыл бұрын

I was diagnosed in my 60’s.

@DocSnipes Жыл бұрын

I am sorry about that and I appreciate you watching the video. What did you find most helpful from it?

@janetandrews1306 Жыл бұрын

@@DocSnipes Everything bc no one has ever explained Al this to me!!

@mick7338 Жыл бұрын

Can someone help me? Im cencerd to have POTS. My heart rate when laying down is like 65-70. Sometimes when standing up it goes really quick to 120, but its for like 2 seconds. But then it comes down to like 100 and it stays there for as long as i stand even for 1 hour. Im concerd to have pots cuz my heartrate goes up a lot when standing, but comes down really quickly after. (not to like 85 most of the time) Someone know my chances to have pots?? No diziness, no fainting, no shortness of breath etc etc. Just the high heartrate.

@DocSnipes Жыл бұрын

Please click on this link to get a referral www.helpguide.org/find-help.htm

@caitlynf1037 Жыл бұрын

I had chest pain but changed my diet and it’s helping a lot they think I have it but are checking everything else just in case

@tommyselbe1999 2 жыл бұрын

Happy Birthday 🇺🇸 America

@DocSnipes 2 жыл бұрын

Thanks for watching.

@USMARSHALL2011 2 жыл бұрын

Cool

@aaronisbigg Жыл бұрын

This is so annoying. Worst thing i’ve experienced.

@DocSnipes Жыл бұрын

I am sorry about that. What tips from the video will you use to address POTS?

@jrheartly7211 2 жыл бұрын

I've had chest pains and dizziness headaches palpitations and many other symptoms for months now. The cardiologist thought I had blocked arteries so sent me for a nuclear stress test the results came back that there is a problem when I am under stress like exercise. I find myself being able to do less and less but I always try and have at least 30 mins each day of excercise. Which is getting harder and harder as the months have gone on. My cardiologist then sent me for a echocardiogram and ct angiogram but the results came back completely clear so he is now discharging me saying its not my heart it's anxiety but I know its not. I've only got anxious because of the symptoms. When I lay down my heart rate is normally 66 but if I stand it goes to 120 some times 130 140 if I stand still it will slow and go back to around 80 but if I walk normal people pace it's back to 120 and above. Does this sound like pots and does anyone know what I can do to get my doctors to listen. I feel like I'm a prisoner and everyone talks to me like I'm a liar. Only my family see what happens to me, one minute I'm fine the next I move my head to fast or walk to the toilet and I'm gasping for air and I can't calm it down. But the cardiologist says there isn't any wrong with me. Can anyone help. I life in the uk though so nhs not private and I'm normally fit and healthy I actually work as a hospital porter and walk about 40.000 steps a day well did until I got this now I can't do much of anything. Its horrible I have no energy to even play with my daughter its heart breaking.

@sparrowcrow 2 жыл бұрын

Richard, have you had Covid? You may be dealing with Long Covid. Many of us have developed POTS or POTS-like symptoms. There can be a delay between infection and the onset of issues, so some people don't put it together. I tried to slowly build up my activity level after Covid, and it only got harder and harder and my issues worsened. There are some things to help, and it helps also knowing that you aren't alone.

@jrheartly7211 Жыл бұрын

@@sparrowcrow Yeah I've had covid but not sure if it's long covid or what. I am trying my best to walk as much as I can but some days I just can't. If I struggle to walk I'll try and do some exercises either laying down or sitting but on bad days it's impossible and better days it's exhausting. And as the weeks go on I don't seem to see and improvement. Thanks for replying.

@sparrowcrow Жыл бұрын

@@jrheartly7211 Take care. After worsening severely for about 5 months, I focused on the concept of "pacing" (you can find out more about it by looking at me/cfs resources online). I thought I was already resting and taking things slowly, but I had to go sloth speed -- mentally and physically. I stop now before symptoms get bad (rather than pushing a bit beyond feeling bad). After starting that, I have had slow improvement over the last 8 months. It's frustratingly slow, but it does seem to be working. My best to you!

@IceLynne 2 жыл бұрын

I wrote a comment a few hours ago about how I healed from POTS and now it's gone. Doctor Snipes, did you remove it?

@goldie3602 2 жыл бұрын

Please repost your reply... I am very interested in in an what you said.

@strengthwithinme6795 2 жыл бұрын

I beat POTS also with Functional Neurology and special supplements. Check out my Functional Neurologist, Dr. David Traster. Or contact the Carrick Institute for a good recommendation. I flew in from another country to be do the 5 day intensive functional neurology treatment with Dr. Traster. I got POTS after a severe concussion during an osteopath treatment. Functional Neurologists do extensive assessment of the brain stem, autonomic system and all parts of the brain before doing functional neurology treatment specific to your brain.

@DocSnipes 2 жыл бұрын

I did not manually remove anything, if you linked to outside sites or said something controversial... KZfaq may have removed it.

@IceLynne 2 жыл бұрын

@@DocSnipes no, I didn't do anything except tell my story of how I healed.

@suvam_0 Жыл бұрын

Tell us!