Dysautonomia/POTS FAQ

[ninoninochile]

You do a beautiful and important labor spreading this information. Hope you feel good today and everyday... Thank you!!.

[1210donna]

you've done a fab job :-)

[rx2mozart]

thanks this was really helpful.

[Elevate4Him]

auw you're so cute! i love you!

[Jazzyteach65]

you have my support ;}

[LouLou3078]

Hi, sorry you have this disease. Thank you for posting this video. I have MS (Multiple Sclerosis). I have most of these symptoms plus a few other different ones.

Have you looked into being tested for CCSVI . An ultrasound to the neck vein to see if you have any narrow of the veins, CCSVI (Chronic Cerebro-Spinal Venous Insuffiency). A lot of people with Autoimmune Diseases are testing Positive for CCSVI. Clinical Trials are being conducted around the World. Type in CCSVI on U Tube,.

[biebersshawtys13]

I have thaat I'm 14 n yeaah ikr I missed like 2 months of school alredy

[homeintheclouds]

@biebersshawtys13 :/ i'm really sorry to hear that. i hope you can jump back into school soon! it sucks getting back on track :/

[biebersshawtys13]

@homeintheclouds tHANKSS(:

[surferbuddhist]

I also have POTS, but mine is due to Ehlers Danlos Syndrome type 3. I experience my POTS as a weak, dizzy feeling, then nausea, sometimes chest pain, then I lose my vision for 5 to 20 seconds, and if I don't sit or lay down I'll pass out.

[homeintheclouds]

@surferbuddhist wow, that sucks :/ i'm really sorry to hear that! i hope you feel better soon <3

[ChrisVitchev]

Hey, i have it, im a guy im 26! I got a virus or a infection in my blood streem and messed me up!

Do you still have it? or are you better now?

[homeintheclouds]

@ChrisVitchev wow, way outside the norm are ya? :) lol. i do still have dysautonomia. i'm still kind of getting over a flare up.

[Howlngwolff]

i have dysautonomia too and my doctors are saying im just making it up/crazy and im sick of being told to suck it up. thank you for making theses vidoes

[homeintheclouds]

@Howlngwolff <3 stay strong, okay? i'm really sorry that you're going through that :( just know that there are people who believe you. if you want go check out teenpotsyproductions or this channel (my other channel) :)

[corky4343]

I have dysautonomia, POTS, and SVT I also had a mini stroke so I got this POTS from the mini stroke I am not a teenager though LOL I am 29. My innsult was the stroke and I also had a ablation to correct the S.V.T but it did not work. I get dizzy to also my vission fogs over and looks like yellow honey sones hard to describe. I suscrbed to you, 5*

[homeintheclouds]

@corky4343 thanks for subscribing, although you may want to head over to this channel :) i no longer update this channel.

[taniaaust1]

hi.. i have POTS too and just directed another one about your age who i believe has POTS to see your video. Good job with it. i have POTS myself (im almost 40yrs and have it as part of CFS.. POTS is common with CFS). I do want to point out a couple of things to you thou about POTS which you havent realised.  Not all have any obvious blood pressure issues and those who have CFS and POTS, exercise can make the POTS worst, not better. good video still :)

[homeintheclouds]

THANK YOU EVERYONE for getting me to a thousand views!!! EEK!

[UnstopableEmma12]

Hi! I'm 12 and have been sick since January when I had two episodes of anaphalxis. I believe I have POTS and you describe my life exactly. I tested positive for the dysautonomic gene but no other diagnosis yet. Thank you for making me feel like I am not crazy!!!! I want to do a video too some day...you inspire me and my mom...too.

Emma

[dysautonomia1]

I am thinking of you.... hoping you will feel better, you are so young like I started out. I have written a book on living with dysautonomia, called God Needs me, Living with dysautonomia, it will take you on my journey and it will also give you some hope and education on what we go through. Everything you are saying is true.

Hang in there. Lynn Fox Adams author

I am trying to bring awareness to dysautonomia patients and caregivers

[neil1758]

this sounds like you have chronic fatigue syndrome. u should try and get diagnosed.

[nymike06]

do you have good days & bad days but still can function in life (school, shopping, exercise)?

[nymike06]

also, if you have near syncope (fainting) have an echocardiogram done to rule out cardiac & a brain MRI to rule out anything in the brain. just a FYI.

[nymike06]

take your blood pressure sitting down and than take like like 5-10 min standing up and see the difference. also, rule out your thyroid. self diagnosing wouldn't be right at this point. i'm not being mean but the root of the problem can be determined by a professional.

[DysautonomiaMD]

Laying bp = ______/____mmHg; Heart rate = ___

Sitting bp = ______/____mmHg; Heart rate = ___

Standing bp = _____/____mmHg Heart rate = ___

Abort procedure if you feel like you are going to faint; try to feel 'equilibrium' before taking bp, or else the reading will not 'take'.

Many posted vids show examples. Do a vid with a bp/hr maching, in all 3 positions, and then give us the data. Only by doing it all a standard way....this is the beginning of obtaining real info. LOLv, Marg

[nymike06]

thanks for writing back. the doctors diagnosed you w/ pots after a blood test? i would think it would take more than that. about 10 yrs ago after mononucleosis i was in bad shape for like a year or two. i was also dizzy, weak and had positive tilt test. i was diagnosed at the time with neurocardiogenic syncope. i hope you improve.

[nymike06]

what sort of tests did the neurologist do on you?

[Stacey31233]

Ahh it said you page didn't exist on Twitter :(

[Stacey31233]

I have Postural Orthostatic Tachycardia Syndrome, I got diagnosed at the start of this year. I am 16.

I will add you on Twitter so I can talk to you:)

[luminescentfeeling]

Thank you for making this video, it's great to see more and more people educating people via youtube - like yourself.

Well done, a good explanation about the problems we face!

[DysautonomiaMD]

luminescentfeeling, Your comments are very important to me. I know you have been working hard on this issue. Am glad to be part of the Team.

[RoflTastic00]

uhm i have a video about it xD i'll send it to you :)

[RoflTastic00]

i have just been diagnosed with Dysautonomia like today xD and i have alot of fainting spells and a high anxiety level. i just wanted to say thank you for posting this vid, cuz it cleared up alot of things that i didnt understand when my doctor told me about it. :) they did like a whole bunch of crazy tests on me xD but anyways, im comforted in knowing that someones else, such as yourself, shares the same symptoms as me :D

[DysautonomiaMD]

Congratulations on your diagnosis....now you can put your symptoms 'in a box'. I will help you and everyone else as much as I can. In the meantime, it may help some of you to know that when I wake up in the morning, I have a 'ritual'. I lay in bed until I drink 500 ml - 1 liter fluids. I get up slowly and walk bent downwards like I'm looking at the floor. This has helped me. As with all my advice, this is not meant to be individual medical advice. I hope that some of my comments will be helpful.

[00BeesKnees00]

Does Yaz make you depressed? I'm taking Desogen and it's like everyday's a funeral. I read somewhere that dysautonomia resolves by its own. So that's good news. Fingers crossed for both of us! :)

[00BeesKnees00]

Fabulous info. I got a dysautonomic flareup after having a stomach flu. How are you doing on Yaz? I'm thinking of switching to this pill. Lots of helpful info in your video. Thanks for posting.