A Demonstration of Dysautonomia (POTS)

[FordF1502001]

Bless your heart I suffer from severe anxiety due to fibromyalgia and most days I'm bedridden. The fatigue and insomnia are so bad. I hope you at least get a good nights sleep. I will pray for you.

[1210donna]

thanks so much, you did this wonderfully

[moomoobindi]

Sweet how your dog put his paw on your arm at the end.

[Fussybug1]

THANK YOU!

This video will be so helpful to help others understand me.

Your monitor is very cool - how did you do that?

[theombligosx4]

what treatments have you tried? and has anything worked for you? i am 17 and have had it for ten years. I went to the Mayo Clinic at Rochecester MN last year to finally get diganosed. i live at a boarding school and no one understands anything, nothing has worked for me even the thing i have learned from the pain rehab clinic at Mayo. thanks for sharing this video. hopefully people will start to "see" our POTS and how it affects our lives.

[CoolKarmaVideo]

@theombligosx4 {{{{ gentle hugs }}}} I'm sorry you are having a challenging time especially at school. Sometimes, some of the treatments do work well and at other times nothing does seem to work. But I can say for the 30 years I 've lived with active episodes that for me it does seem to wax and wane. Don't give up hope, hun. dinet.org has some of the best info I have seen on the web & some really lovely members who I have found to be of tremendous help and comfort. Good luck.

[FamilyOfThreeNow]

thanks for the demo. a lot of people dont understand what it's like living with POTS hopefully this will make them realize

[CoolKarmaVideo]

@FamilyOfThreeNow -- Thank you for watching. And you are very welcome, it was my pleasure to help others with a life limiting illness try and explain what is going on inside and how it impacts our lives in ways they may be unable to apperceive. Good luck on your own healing journey.

[sunkissedbecca]

never thought I would learn more about my disorder from youtube than my own doctor. I have to thank you for you time and energy you spent making this video. I too have pots. Im a single mom just learning about the cause of my symptoms. it took doctors 4 years to find a reason and took way more than 4 doctors to listen. I have even lost friends, mad family members, lost a lover and a home but knowing there are others that cope with the same thing, makes each hour more doable.

thanks

[CoolKarmaVideo]

@sunkissedbecca -- you are very welcome. There is certainly an aspect of "loss" that comes with this and other life limiting illnesses. But I find that it also brings together some of the most amazing and strong pioneers and it is such a blessing to meet each of you and know that we are not alone on this path that we travel. Deep bow.

[thispoetgirl]

Awesome video...thank you for taking the time to demonstrate what we face.

[CoolKarmaVideo]

@thispoetgirl -- thank you so much for watching. It is hard to describe to folks and sometimes even hard for ourselves as we try to wrap our head around it and wonder what ever happened to our "remembered" self. Good luck on your own healing journey.

[JulieSomeone]

Thank you for sharing this video.

I have like full body tremors, when i get upset...

and learning about others helps me to know that i am not alone.

No need to be diagnosed...because to me, the full body tremors come from psyche meds prescribed by the VA. And i'm so done w/ being a guinea pig for VA Medical. I'm TBI survivor. [brain stem injury] comaose x3wks

I had TEN. [Toxic epidermal necrolysis] allergic reacion to VA prescribed psyche meds.

Thank you so much for sharing.

[CoolKarmaVideo]

@JulieSomeone -- Deep bow. On some days, the only comfort is that we realize we are not alone in our suffering. Thank you for sharing some of your story too.

[JandTodd]

I think that my other comment may have disappeared, but I just wanted to say thank you...so very much for making this video. Sometimes we feel alone, and maybe even crazy. Thank you for reminding me that I'm not alone:-) -J

[CoolKarmaVideo]

@JandTodd -- nor crazy ;-) Blessings to you. And happy new year.

[JandTodd]

I cannot thank you enough for this video. I feel so hopeless sometimes. Thank you for this demonstration. So many people doubt...It's depressing.

[451970561985]

That´s what every people i know tell me, you don´t look sick , you dont have real problems like a heart disease or something, but it feels like a nightmare that never ends and only you carry.

[CoolKarmaVideo]

@451970561985 -- Deep bow. Sometimes if just feels a little better knowing there is someone out there who understands.  Know that you are not alone.

[mikeer222]

check for gluten intolerance or other food allergies

[blackyink]

I love the cinematograpy - you have done an outstanding job with this incredibly informative video! I also love to see how your dog is so attuned to you, and the way he/she shows it in the video!

[CoolKarmaVideo]

@blackyink -- Thank you so much for watching. I often refer to my Xolos as my "rescue dogs" ... because they rescue ME every day :-) I talk about them in the first chapter of In The Lila, which is also on line at YouTube on my channel. They are such a blessing.

[cfssurvivor]

thank you so much for doing this....I know exactly what you mean and now ours may understand what we live with......

[CoolKarmaVideo]

@cfssurvivor -- I was diagnosed with CFS years before the POTS. These "invisible illnesses are certainly a challenge. Good luck to you on your own healing journey.

[maortega]

Take a look at this page: gorgojos.8m.net probably this will cure you or help you.

[missmisfits]

watching this seriously made me cry. i have dysautonomia as well, and understand the great lengths we sometimes have to go to just so people will believe. one million hugs from me to you. <3

[ApacheBoneknife]

Everybody should try some skilled relaxation techniques, such as deep breathing or yoga. Autonomic dysfunction is often the result of too much stress. I belong to a forum where many people of been relieved of AD with skilled relation,

[CoolKarmaVideo]

You make a good point. In 1984 I presented a paper at the Western Psychological Association on the impact of progressive relaxation on learned helplessness. Since that time I have produced my own relaxation meditations (some available here on YouTube as well as available in high quality MP3's at Amazon.)

[CoolKarmaVideo]

I have trained and verified my own skilled relaxation with several bio-feedback devices as well as being a Zen meditation for over 10 years. In my case, all of my work has not made an impact in the ANS dysfunction that I experience as part of the POTS (Dysautonomia). I still do the meditation and deep relaxation work, because even though it has not been a key factor in healing my body I do believe it does a world of good towards equanimity of mind.

[acristina155]

Very informative. thanks

Your dog is very sympathetic to your pain.

;)

[geena6]

Such an informative video,my heart goes out to all who suffer from this condition.

Thankyou Lloyd for sending this video to me.

Geena

[weeyin1155]

Thank you for such a detailed information video. Our thoughts and prayers are with each of you who suffer from this condition. Thanks also to Lloyd who shared. Blessings and hugs...Jan and Susan ♥

[MisterStereo]

Informative

Take care

[MsEndo420]

just got dx'd ! my hr usually sits at around 160-200 standing and bp is anywhere from 43/33 to 70/63 standing. Great Vid :D i was only up for 9 mins on my TTT my bp and hr got waay to low to quickly and my iv infultrated ( PAIN !)

[Carolynjoy1228]

Thank you for making such an informative video. So many people think that POTS is "all in your head"...a made up disorder, a disorder caused by anxiety. Thank you for providing such a clear explanation is such a professional manner. Credibility is priceless! I will share this with my family and friends.

[SANDMANCASTHISSPELL]

Wow, thats crazy. I am so sorry to hear you have pots. This is a great video. Informative and interesting. Thanks

[DysautonomiaMD]

My heart rate also jumps around, and my blood pressure goes so low when I stand up, that people can see it. My face turns green and white, and we have to 'abort' taking my blood pressure. Or else, I will faint on the floor. I coined the term, "Brittle Dysautonomia" because my dysautonomia is unpredictable, has wide swings in vital signs, and my response to medications has been variable.

[kaazoom]

Thank you for posting this video.

[beachbumcag]

great demonstration. i have inappropriate sinus tachycardia.... and i am 24 years old..... my heart rate goes up to 160 sometimes for no reason......

[jlcc777]

God bless you for such an awesome demonstration ! I've been struggling with this life destroying condition for most of my life, but has become devastating in the last 6 years of my life - and only in the last 2 years have we discovered what my illness actually is.  Again, very well done and I hope there will be more attention and for this illness to be taken more serious in the medical field. - -- -Blessings !

[luminescentfeeling]

Superb video, well done in making this and educating the public.

On my TILT test my pulse was 170bpm in 2 mins and they stopped the test, so it's good you mentioned a TILT test as it's a vital diagnostic tool.

[jilly9]

are you double jointed? (have you been checked for Ehlers danlos?)

[CoolKarmaVideo]

I have no symptoms of EDS, though I do know a lot of POTS people seem to have both.  I have other autoimmune disorders though, in addition to Dysautonomia.

[ywa1t]

Thanks for posting the video - it really shows people what goes on with our bodies with that monitor you are wearing - I have seen it on the monitors when I am on one - but everyone doesn't get to see it and it's so hard to explain!!! Take care!

[kyms66]

Thanks so much for showing the world what POTS is. It is so hard to describe in words, the hr monitor really allows people to see what we can't show them.

[christystgermain]

Terrific! Thank you. You bring, not only the patients, but doctors what is needed most, awareness and acknowledgement. Thank you. Approx. 130 days ago, I had an ambulance ride that would lead me through, emergency rooms, numerous blood draws, hospital stays, the Cleveland Clinic, the Mayo Clinic, local PCPs that didn't believe me and thought I just needed to calm down, cardiologists, infectious disease, nerve conduction tests, doppler scans of my heart, tilt table. Thank you for the video!

[simbofats]

Very nicely done. "Normal" people would still not comprehend how absolutely exhausted you must have been after just 4 minutes of standing, because, as you said, you don't look sick. It's akin to running a 4-minute mile... internally. Although I'm sure your cute puppy understands.