What is Postural Orthostatic Tachycardia Syndrome? Part Two

[allkirken]

This video is absolutely amazing. It really displays how people react. I too have POTS and this just makes me feel like im not alone in all of this.

[rapreborn]

I totally love you! You are so awesome! Thank you for showing us your strength and inner beauty and love for others. May you be blessed!

[SuperMissblueeyes]

Thanks for sharing your story & well done for managing to do these videos, it must have been really difficult for you. I have chronic fatigue & although our problems are mainly very different, the one thing we seem to have in common is disabling whole body tiredness. Did you say it lasts for about 5 yrs? I hope you get better sooner. If that's your son I saw in one of the videos, he must be so proud of his Mummy & your man must be so proud of you too. You're doing so well, keep up the good work.

[FireFlames012]

My POTS came on very suddenly not too long ago. I spent 12 days in hospital until they diagnosed me with it. My heart rate goes from 66 to 164 by simply standing. I find myself passing out 2-5 times a day. I have managed to hold my job despite the fact that I am tired constantly and am drinking about 3L of water a day. It is truly exhausting. Thank you for posting.

[Steuben1978]

Seems i got this Problem too! Last Year i was treated for 3 month for lyme disease Stage III! A lot of my symptoms are gone! But theres one Problem! I still feel tired very often! Sometimes dizzy and heavy legs! And my Heart gets from 50-60 to 90-100 when standing up and the goes back down to a normal! rate! Everytime i make a move even in Bed i can feel my heart rate going up! Is that POTS???

[TheKorrey]

Hi, I am 34 years old and very sick. I have been sick for a long time. I am single Mom to 12 year old girl. I am disabled. Life has been so hard lately and had pretty much given up except for Daughter. Everything in me has started giving out, liver, heart, kidneys. I am very underweight and malnourished. I have lost everyone and everything I cared about. Your video has changed my life litterally, I am not alone!! THANK YOU for this, I now know what is wrong with me! I AM NOT ALONE! FINALLY!

[afqdrama]

I am 30 years old and have been struggling for 3 years with no diagnosis in and out of hospitals. I have not been working and am sometimes unable to walk or speak after I wake up from what I call an "episode". I have just been diagnosed with POTS about a week ago. It feels weird to finally have a diagnosis and don't really know much about it. Thank you o much for posting this channel and for being so open with how POTS has effected you. <3 <3 <3

[StephanieH0103]

I was just diagnosed with POTS... I thought I was going crazy and maybe it was all in my mind. I am glad to have an answer. But now I start the journey to see what medications can make my life semi-normal. I am 37 and have not worked in a year.. I hope to get some relief soon. Thanks for all your info! They def have helped me and my understanding of this illness

[thegauntlet2001]

the only reason i know about it is because i stumbled upon it by accident. so spreading this awareness could in turn generate a cure , which is better than waiting for a rare disease turn into a common one like the cold.

[thegauntlet2001]

lol im not sure how much of a right i have to speak since .....i basically don't have anything. But your videos are very motivating just the same , i can't relate since i don't have these things but i feel for you and others just the same that have this. I do belive spreading awarness is important because perfectly healthy people are just don't to ignore this disease until it either happens to them or someone close.

[Ltigger89]

I love "Miss Ignorance". She really does a good job of showing what it's like to have people in your life who don't understand this condition and how frustrating it can be to have people continuously asking you the same annoying questions. Thanks for your videos. :)

[lovelight05]

I can relate so much to these video's. I was diagnoised with P.O.T.S around 2 years ago, which caused me to have to drop out of college. I'm 18 now and it's been really tough to deal with, at times it does feel like nobody understands and they just think I'm lazy, it's so good to watch this and read the comments and know that there are others who feel the same way I do. So thank you for putting these up.

[apryl808]

Frankly, I'm afraid I'll never have my life back..

[apryl808]

I was just diagnosed today by my cardiologist. I thought this was something that would go away with some sleep & medication but I'm devastated to find out that's not the case at all. I haven't been able to attend work or school for over two weeks now. I'm afraid to drive, or go anywhere. My anxiety with this condition has gotten out of control, and I always feel disoriented. I've been taking a beta blocker now for a few weeks, but don't feel any of my symptoms getting better.

[sbtlgrl04]

I was diagnosed two months ago, after 5 days of being hospitalized and doctors treating me like a guinea pig. Sometimes i think this is all in my head, but my cardiologist tells me that i do have a condition. However, I'm seeing so many different specialists and though its just been a short few months, it is so frustrating. Thank you for posting this video, I can relate. I'm hoping one day I can find just ONE doc that can help.

[babydylan08]

im sp happy you did this video and ur very pretty i know what u mean ppl think cus u look ok that u are,im having a tilt table next week im hoping they find a reason even typin this is tyring x

[sabbathkid]

i went to high school with a girl name Andrea who has pots. what is weird is that i had never ever heard of this condition until just recently. it is devastating to me. i must say that i have much respect and appreciation for you making this video. keep doing what you are doing. it is important to share this and let people know. i hope all is well. keep living life! :)

[sabbathkid]

i went to high school with a girl name Andrea who has pots. what is weird is that i had never ever heard of this condition until just recently. it is devastating to me. i must say that i have much respect and appreciation for you making this video. keep doing what you are doing. it is important to share this and let people know. i hope all is well. keep living life! :)

[SuperSaxophoneplayer]

this is a really good video, i got diagnosed with POTS on september 3rd this year...just a couple days ago. it took 5 years for me to get diagnosed, i had been told it's all in my head, i've been told im anorexic and ballemic, and i was told things like that....i always knew it wasnt any of that, no one but my family would believe me, but finally i found a doctor in toledo who was able to diagnos me. good luck with everything :)

[lpavvy]

So glad to see we're getting the word out about POTS! I've had it since June of 2006 after a horse accident. Not fun but just have to remember to take life one day at a time! :) Hope you're doing well!

[mnlouv]

Wow. The month I turned 15 I started having regular POTS or neurocardiogenic syncope (not sure which I have) symptoms. Of course I would fall into the range right off the bat

[imckbe]

thank you so much for creating this video!

[Xicota85]

Great video!! I have a mild case of this from Lyme disease, haha lots of times sitting on the floor in stores while waiting in line.

That was interesting to learn about how it takes more energy for us to stand up than it takes for regular people. It sure feels like it!

Really really good example of communicating about a chronic illness. We need more people with chronic illness to speak up for ourselves and share our side of the story.

[poohakamua]

thank you for this! im 14 and my friends dont get it know i can show them this video they dont understand and my friends bein my age dont take the word pots seriously b.c its funny to them but to me its my life so im deff. subbin u thanks

[livingfaith17]

Hi! Can I ask what kind of eye-makeup you use?? I like it very much...=))

[lsu079]

Thank you!

[sn0white68]

I Live with Pots everyday... I was diagnosed a little over a year ago but have been ill for over 5 years. I use to think it was all in my head, because the doctors i went to made me feel that way. When I recieved my diagnosis i cried. not because i was sad to hear it but because i was finally told i was not crazy. I had a name to why i was feeling this pain and illness. There are days when I can't get out of bed. But I try. Thank you for sharing your story. Ruth B.

[Jayarajification]

@sn0white68 yah, u hv every reason to be happy now

[justthemom3]

BTW....looking for a doctor in Oregon, preferably, Albany or Salem area.

If anyone has any ideas???

[justthemom3]

My husband just had a regular work physical and asked the doc if he had any ideas for POTS docs in our area as we just moved. The doc totally poo-pooed the disease and when hubby was telling me, I was livid. "Did you tell him this, and this, etc." Hubby just said it didn't matter cuz we never have to see that doc again. My point is it is so important to get docs and others educated so POTS patients don't suffer the misunderstanding along with the disease! Thanks for the video!

[tonya5773]

Hi I live in NCM and read your article in The Press. I would love to talk to you. I have had it since 2007 and it has really affected my life. I see dr nanavati in Court House. I would lo0ve to help spread the word.

[Gryben]

Well done Kylie, it explains it well..I love the bit about Miss Ignorance asking can't you just take medicine. (You forgot the other classics: do you eat well? Maybe try taking vitamins?

[StacyBooRN]

Thank you so so much for your videos... you'll never know how much they comfort and inspire me! When I get really down, I watch your Miss Ignorance video and it helps my mood... I've watched it at least 20 times this week after being diagnosed!

Please keep up the good work, you are doing an awesome thing, I can't wait for some more updates!

[RaeBabe1588]

I completely agree!

It's so hard to talk to my friends about how I feel - they don't understand how tiring daily activities is. Having someone else who's going through it makes me feel so much better.

I think what makes it so tough (as I'm sure most of you know) is thinking how active you used to be. I was running a few miles on a daily basis - now, if I can go to class without getting tired I'm ecstatic.

[poohakamua]

im tht way to i used to do tons of sports bein only 12-13 (im 14 now) when i got pots i was very involved now i only do guitar and i want to do dance im workin my way there tho and yesh people just dont understand its ..kinda scary sumtimes

[082487mike]

Thanks for posting this, I'm a 22 year old male who was diagnosed with POTS in 2006. I live in Ontario, Canada and nobody can relate to me, they all think my illness is in my head. I am in my third year of university, and I've been off for almost 2 weeks now as I can't concentrate or do much, I'm hoping I feel a little better soon so I can catch up. I'm not going to let this illness take control of my life. I am on a steroid (Florinef) and an antidepressant (Cipralex) and it seems to help.

[Kghrt]

Thank you so much for making this. I have POTS too and can appreciate how much effort it took to perform. You are incredibly talented, I am so inspired by you. I really like the thoughtful, nonjudgemental way you responded to comments too. You are making more of an impact then you know!

[SoulsthatFly]

Thank you for posting this. I have had POTS for 3 years and it is sooo hard to explain how i feel sometimes. You did a great job.

[MiraculousMoments]

Loved the way you explained it. So creative and the outtakes at the end where awesome. Specifically Miss Ignorance's appearance at the end talking about her boyfriend being hot! :D

[BuddyBoy091994]

i have Ehlers-Danlos Syndrome and POTS is very common with this.

Thanks for making this video. It really gave me a bigger understanding of the disorder. There is a chance I have it cause i show alot of symptoms. POTS could be the reason im always tired.

[peggyelly]

hey, my bff has pots. first i didnt understnad. she said she was sick and wasnt getting better. then she explaned. i cryed for th longest time. i love her sooo much and cant stand to think of her in pain or anything. but thank you. this help me learn some new things.! thx :)

[swellchic2]

My little sister was diagnosed 2 years ago, she is only 13 and for my Graduation project I am doing a power point on POTS.

I hope it's ok if i use this video? thanks!

[oneracheljohnson]

Thank you so much for telling your story. My 9 year old was just diagnosed. We were lucky God had the right cardiologist working when she was admitted to the hospital. Yes, I know you are not a doctor and sometimes, just to hear what it's like in the real world is what is needed. It was for me and my daughter. Thank you!

[lainflux]

Im so glad i found this channel. I've had trouble finding information on it. I havent been working for the past year. I get symptoms along with panic attacks.. not sure if thats an issue for others with POTS. My dr has me on beta blockers now which does help a bit but i still get alot of the dizziness/faintness. I just hope eventually this goes away.

[zen242]

LOL - and then I stand up and it all goes to hell... I can so relate to that. Had POTS as a male for 6 years now,

[official7mrs7jonas]

I also have POTS, and I'm really worried about getting a job in the future because my symtoms can be quite extreme and im only 14. But thanks for spreading awareness and sharing your story :)

[jilldworshak]

this is absolutely awsome!!!i love both videos and with the humor makes it easier to understand for some! I have been passing this along to everyone I know so they know what it is and what it does to a person without having to try to think of how to describe it! THANKS SO MUCH!!!!!!!!

[hiphopqueen265]

Wow! Amazing video! I have had POTS for a year now. boy oh boy, it's a roller coaster!

[rabidmonkeyjoe]

hi Kyli my name is Joey, check your youtube channel's inbox, my comment was way too long so I mailed it to your your youtube channel instead of posting it here and thanks for making the POTS videos they helped me and everyone I showed them to understand my condition alot more than before :)

[Pitraptor]

Huray! It's Joey lol how's iot hangin bro, oh wait! I'm talking to you on aim right now lol. Anyway, good video Kyli. Thanks for helping people like my bro Joe better understand POTS.

[faceofjesusinmysoup]

I don't have the same disease as you, but I know what it's like being fatigued etc. all the time. I'm in remission from bone cancer, and my chemo damaged alot of my nervous system so I have neuropathy which goes along with Chronic Fatigue Disorder. I also have gastrointestional disturbances too, most like caused by my stupid ass chemo. NOW I have a disorder called Thrombocytopenia where I have a low platelet count, thus my blood doesn't clot well and I bruise like hell.

[faceofjesusinmysoup]

oh yeah, and I have high blood pressure. Have your doctors advised you to eat salty foods? I heard that raises your blood pressure

[chronicallykyli]

I'm so sorry to hear you've been through so much. ::hugs:: It has to be so tough. I hope things start getting better for you - you'll be in my thoughts & prayers.

Yep! People with POTS are told to eat a diet high in salt. I put salt on everything and eat olives by the handful. lol.

[dpulice07]

i hope you don't mind i am going to post your videos on my website! i love them they are so true to how i feel! you have done an amazing job!!! =)

[chronicallykyli]

Thank you!!!!!

[christystgermain]

Your contribution is enough; great job! Let's continue to raise awareness. I have had it since July 10th this year. Doctors put me through 5 months of tests. I had to stop training horses. Raising my arms above my head, proves too much at times. The work situation poses an issue; daily life is so unpredictable and for someone who finds work satisfying, stress relief, and inner confidence, it is devastating being out of work. On Lopressor. Need a job that can handle POTS. Any ideas?

[chronicallykyli]

Thanks so much! :)

I know how terrible it feels to not be able to work. I looked into at-home jobs for awhile but wasn't happy with anything that I found,unfortunately.

I wish I had some suggestions but can't really think of any. Maybe someone else who reads this can give us some ideas. Anyone? :)

God bless you!

[chocolatemusica]

u did amazing on this!!! i have had POTS for 2 and 1/2 yrs and in a wheel chair..im 17 so i gotta deal but everyone keep hope

[chronicallykyli]

::hugs:: Thank you so much. Stay strong, things will get better.

[FancyMouseGal]

my mom has POTS, it's sometimes hard for me to understand what she goes through, and this video definitely has helped me see what it's like having POTS.

I hope you're doing well, good luck!

[littlepixie81]

Hi Kyli What a fantastic video! Great job! I hope you're doing well. I suspect i may have dysautonomia and am literally fighting to get doctors to listen to me! Keep up the good work!

[offshoot7bam]

Haha, I liked the videos, I can relate 'cause I have it myself and I've been dealing with it for about 4 years or so, you covered a lot in just 10 minutes! Good job and can't wait to see more.

p.s. Miss. Ignorance is someone I've had to deal with way too many times lol.

[chronicallykyli]

Hi everyone! Just wanted to thank all of you for your comments & messages!! If I haven't gotten back to you, I will soon but if for some reason you still don't hear from me, feel free to message me again. Talking to all of you has been wonderful. :) I hope to have a new video up really soon!!

XOXO, Kyli

[teknion00]

This was a great video series. You are to be commended for giving others with autonomic dysfunctions support in that they are not alone and someone does understand them. You restore my faith in teenagers and young adults. It's obvious that you care about others. You should be a movie producer. I laughed a lot at your portrayal of Ms. Ignorance. I have met her many times in many people. Hang in there and God bless you. Barbara in Tennessee.

[chronicallykyli]

Thank you :) You made my day.

[msceejay2000]

Got a good friend with this crap... it was a great explanation.

[nymike06]

how old is your friend? was it an acute thing for them? how did they get a diagnosis? thank you.

[msceejay2000]

She is 43. It took a year and a half or so to get a diagnosis. Her situation is complicated by excessive thinness (if not anorexia the appearance of). Acute... as in bed ridden, no. She has good and bad days. On good days she functions normally and is a blast. On bad days she locks herself inside her house. Complaints of headache, dizziness, and non specific "I don't feel good" are more the norm than the good days, but I take the good ones when I can get them;)

[nymike06]

thank you for the speedy response. i'm new to youtube and never sent a message before another person on here. i have been watching the POTS videos and totally relate. i appreicate the response back and the person you were talking about.

[chronicallykyli]

I'm sorry to hear about your friend :( Anorexia can be a cause of POTS. I hope she starts to take care of herself and gets healthy again. The good news is if she does, there's a good chance she'll probably begin to see a big difference in her health. I have good days & bad days too and I like your way of looking at it. You sound like a good friend, stay you :)

[biggusyiddus]

Excellent video, 1 and 2. Miss ignorance is fantastic, made me laugh and represents pretty much everyone i know, in the beginning at least. i have been diagnosed with CFS/ME but am wondering if i have this too because i pretty much can barely sit or stand (barely walk anyway) without my heart rate leaping into the 120s and bp low, palpitaions etc but then i guess it could be part of the CFS. Anyway, informative and funny-keep up the good work.

[biggusyiddus]

sorry must point out this is my husbands log in-just in case anyway who knows big yid is wondering, must sort out my own.

[ReineDeLaSeine14]

Lolz...I was born with Dysautonomia!!! You forgot to mention EDS girl :P

Oh and the extender to your cross was in front which I kept laughing at too :)

YOU ROCK!!!!!

[chibiyokaichan]

I love your video. I was diagnosed with POTS before I started high school and it kept me on homebound for much of the time. People would always look at me strangely when I looked normal but was too sick to attend school. Your video gave me hope that someone could understand me. Thank you so much and God bless!!

[mshell4444]

Kyi- What a great video. I was was diagnosed with POTS 8 years ago. Thankfully, I am still able to work, but when I get home I'm exhausted, find it difficult to commit to things other than work because I'm exhausted -how I feel unpredictable. Your videos are perfect for me to share with my son and daughter in their 20s. It will really help than gain in their understanding ... not to mention raising much needed awareness about POTS/Dysautonomia. Thank you! Thank You!

[BehindtheLens414]

Kyli -- Thank you so much for this video! It's wonderful to see a fellow POTSy working to spread awareness.

Are you on Facebook? If so, you should join the POTS Dysautonomia Awareness group. We are a strong, active community of POTS patients and supporters that strives to spread awareness and provide help and information to all POTSies. I think you'd be a great addition to the group!

I'm Adam, by the way. :-)

[chronicallykyli]

I'm sorry to hear you have Dysautonomia as well - and I'm also sorry that you feel it's somehow wrong or shameful to talk about yourself. I'm trying to spread awareness about an illness that has greatly affected my life. To just talk about the illness itself would completely fail to do what I'm trying to do and that is, paint a picture of what life is like with Dysautonomia. If that bothers you, read a textbook instead. It'll be less personal.

[philwatson26]

thanks! great video's

[ChloeCost]

great video!

i have POTS, so i'll definitely be looking out for any new videos from you =D

[radlikemad]

this is awesome kyli! looove it so so much! amazing job!