Our POTS Diagnosis Journey || Dysautonomia Awareness Month

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This year I have brought together a fabulous group of Dysautonomia Warriors from 4 different countries across the world to talk all about Dysautonomia for Dysautonomia Awareness Month. We all live with POTS ( Postural Orthostatic Tachycardia Syndrome) which is a dysfunction of the autonomic nervous system and causes high heart rates, low blood pressure and many other symptoms. This October we will be bringing you lots of videos sharing our lives with POTS to help fellow sufferers and help the rest of the world understand what living with these chronic conditions is really like!
This week we are talking all about our diagnosis stories; how we were diagnosed, who by, and how long it took.
For more information on POTS & Dysautonomia please head to:
potsuk.org or dysautonomiainternational.org
If you liked this video please subscribe to my channel :)
You can also find me on other social media:
Facebook: / chronicallyjenni
Instagram: / chronicallyjenni
Twitter: / jennipettican
Facebook support group: / 785786465114178
Mixcloud: www.mixcloud.c...
Email: chronicallyjenni@gmail.com
Patreon: / chronicallyjenni
Kit: www.kit.com/ch...
Blog: www.chronicall...
Meet my Dysautonomia Warriors:
Izzy Kornblau - New York, USA.
izzykornblau
/ @izzykdna
Mikki - Holland.
potsiewotsie
Holly - New Zealand.
hollyhoneey
Sophie - UK.
thesophieproject
Music Credit: www.bensound.c....

Опубликовано:

6 сен 2024

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Комментарии : 21

@IzzyKDNA 4 года назад

love this so much!!

@ChronicallyJenni 4 года назад

Thank you so much for getting involved lovely x Glad you like it! x

@penelopepolinsneemeyer4757 4 года назад

I was diagnosed with dysautonomia two weeks ago, but I’ve had symptoms for around 30 years. I’ve had the pre-referral cardiac tests done and am now waiting to see a cardiologist. I’m 55.

@ChronicallyJenni 4 года назад

Hope things all go well for you with the cardiologist Penny x Spoons & Love x

@penelopepolinsneemeyer4757 4 года назад

I’ll keep you posted, I promise. Spoons and love to you too, cariad xxxxxxxxxxxx

@katkaplan3 4 года назад

Great vid 👍 Ed’s/pots warrior (and lots of other stuff). Yay Izzy!

@ChronicallyJenni 4 года назад

Thanks Kat x Spoons & Love x

@livingwithhope235 4 года назад

I was diagnosed a couple years ago! Thank you did sharing! Love meeting new people that go through the same things.

@ChronicallyJenni 4 года назад

Thanks Hope we love meeting fellow POTSies x

@lea2026 4 года назад

I was diagnosed with POTS around 3.5 years ago as a freshman in high school I'm a senior now and school is quite difficult as well as working. I have to have a chair with me at work and I have to sit out of school exercise. I have passed out over 20 times and just recently been diagnosed also with convulsive syncope so now when I pass out I convulse which makes everything harder and more tiring. I was diagnosed kinda quick around a year before I was diagnosed. I have gotten way better though throughout the years.

@lizh9939 4 года назад

Léa Gonzalez I totally under stand that, high school is so hard when you can barely stand.

@ChronicallyJenni 4 года назад

Thank you so much for sharing part of your story Lea. I'm glad things have gotten slightly better for you over the years. Spoons & Love x

@user-zh4ym1df9e 2 года назад

I feel like I’m going crazy. They told me it was vasovagal syncope but the symptoms lean more toward pots, and I just want a diagnoses so that I can have an exemption from things that trigger me. I do a stair running exercise with my sports team which always triggers me but I can’t tell me coach I have pots I can’t do this because I don’t have a diagnoses. I can’t get an elevator pass at school because I don’t have a diagnoses, even though climbing stairs has physically ruined me for whole days before. Showering is difficult. I feel crazy but all I want is a diagnoses, but I feel like if I go back to the doctor for the second time they’ll think I’m crazy.

@erikkaeveland1050 4 года назад

I need to be diagnosed. The doctors here don't listen to me.i had a spinal cord stroke 8 months ago, and have a large number of these symptoms. I am miserable.

@ChronicallyJenni 4 года назад

I'm so sorry Erikka it can be so hard to advocate for yourself especially when you're feeling awful! I hope you can find a doctor who will listen soon! Spoons & Love x

@ellajaynes2159 4 года назад

My cardiologist has me on a heart monitor for two weeks. If I were to have something like POTS do you know if this device would indicate that? I’m quite new to all this. Thanks.

@ChronicallyJenni 4 года назад

I just had one for 24 hours and they could clearly see all the times it jumped high linked to standing and going upstairs etc so they then did the tilt table test to confirm the diagnosis. Any questions I might be able to help with you can drop me a message or email anytime and I'll do my best to help. My inbox is always open. Spoons & Love x

@ellajaynes2159 4 года назад

Chronically Jenni Thanks so much for the reply. Very helpful video.

@chronicallycooking8905 4 года назад

How do I get in on being in a video like this 💜

@ChronicallyJenni 4 года назад

I make ones for EDS awareness month every year in May. This is the first year I've properly done one for Dysautonomia. If you live with Dysautonomia there's still time to get involved with the last 2 videos if you'd like. :)

@chronicallycooking8905 4 года назад

Chronically Jenni I have eds and 2 types of Dysautonomia I would love to be involved