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kategeorge9
Registrace 1. 04. 2010
The *joys* of POTS (Postural Orthostatic Tachycardia Syndrome), Coeliac Disease and Hyperhydrosis.
it's been awhile
It's been ages since I made a video - sorry!! Thanks so much for the message lately, I shall try and make some more videos soon! Haha this si probably the dodgiest video hey...I particularly like how the light outside changed when I started talked about doom and gloom :-p Hope your all well!
zhlédnutí: 148
Video
My fling with florinef
zhlédnutí 2,9KPřed 12 lety
I was asked about my experiences with fludrocortisone (aka florinef)...for me the combination of high dose florinef and ivabradine (a heart rate med that doesn't affect blood pressure) is wonderful!
Today I am thankful for...
zhlédnutí 95Před 12 lety
The ramblings of a very brain foggy and exhausted girl :-p. Even when our bodies let us down we still have a lot to be thankful for!
POTS weights workout part 1
zhlédnutí 408Před 13 lety
Here's my long promised weights workout with the help of my dad and trainer. I've been doing this for a long time...and before I got sick with POTS I was doing weights 3x wk...so if it looks easy it's coz A) I've had lots of practice, B) I wasn't so POTSy at the time and C) I've only recorded my first sets so you didn't have to see me puffing and panting and looking dodgy. But you can do this t...
Things that make my life a little bit easier
zhlédnutí 135Před 13 lety
Sorry if this is a bit wobby and makes you dizzy! I don't have the steadiest hand when feeling dizzy :-p
the big POTS mystery
zhlédnutí 249Před 13 lety
Apologies if I have come across as patronising or unsympathetic or making it sound like some people are hypercondiacts. That's not what I meant at all. We just need to focus on the important things, which is symptom control so we can have a life, and not get caught up with the little things like sub-diagnosis' or treating ourselves. Which is difficult when you have a chronic illness. And I am n...
POTS and medicalert
zhlédnutí 162Před 13 lety
Australia: www.medicalert.org.au US: www.medicalert.org Absolutely worthwhile for all POTSies!!
POTS and Liver biopsies
zhlédnutí 387Před 13 lety
Here's some useful links: POTS and Dysautonomia Australia (and surrounds) - home.php?sk=group_270234122634 The Dysautonomia Connection (US based) - home.php?sk=group_2230099337 The Dysautonomia Connection (web page) - www.thedysautonomiaconnection.com/
Passionfruit Cockatoos
zhlédnutí 262Před 13 lety
My mum and I were fascinated with the cockatoos eating out passionfruits. It's the small things in life :-)
Dear diary
zhlédnutí 81Před 13 lety
Decided to make a video diary of my journey with POTS, coz I'm terrible at keeping a written journal.
Video response to Kyli
zhlédnutí 58Před 13 lety
Video repose to Chronically Kyli's video "What's wrong with our health care system?"
POTS floor workout
zhlédnutí 2,2KPřed 13 lety
This is just a over-view of some of the exercisers that can be safely done on the floor by POTSies whilst also improving vascular tone (and keeping the blood flowing). I'll post some more in depth videos on each exercise soon! :-)
Thanks heaps for this. I have been on this med for 3 months now too and am not dizzy nor passing out due to my extremely low Blood pressure. I am on 2 tablets each day one morning and one after lunch. No side effects so it’s great for me. Cheers Shirley from SWAustralia ☘️👍❤️
Mam,can u help me,pls,I need your help,how I buy this medicine florinef,pls mam help me,pls help me
Go to goldpharma.cn Its an online pharmacy in Germany, I buy my medicines from them they dont need prescription so its great.
i found this video because i wanted to see the side effects of fludrocortisone. I've been on it for like 1 month and yes i too get chest pains!! but i also get confusion sometimes does that happened to you?
I'm also investigating side effects. My thought is if these drugs aren't going to get me to a high level of functioning then the risks outweigh the benefits.
I'm on Florinef for POTS , my blood pressure is not low I just have very rapid heart rate fatigue lightheadedness nausea… I'm pretty debilitated if I stand or walk too long I have to lay down I also have MCAS , Starting this med has made me gain lots of water retention and I'm pretty grumpy it's hard to say if this is my MCAS causing me to act this way.... or if my body will adjust to this medicine? I do not know
Hello Kate. I need your help. I prosume you live in the UK...hopefully. I have a dog who is suffering from the Addissons desease and I live in Portugal. Here they don´t sell the Fludrocortisone 0.1mg that I need for my Fanny. So I can order it from the UK but they need a prescribtion from the UK. I have only the prescription from my Vet and need any help. They used to sell it in Spain but now they have a production stop. Can you help me? Please contact me on my Facebook A Casota Do Touche or anacristina1971@hotmail.com. I am really desperate because without Fludrocortisone 0.1mg my dog will die.
Thhhhhppppppt!
Hey fluffy beetle. I am still on both, though we've just reduced the doses slightly as its caused my BP (which is stupid and labile and unpredictable and does this anyways) to stay too high. So now I'm on 5mg of the ivab morning and night, and 50mcg (0.5mg) fludro morning and night. I can't actually remember how long it too to see a significant difference...must have been a month or two...it just seemed to work a bit different for me as I've had no swelling or oedema. Hope it works for you!
A few more questions: How much Florinef are you on? How long did it take to make a significant difference? Thanks Heaps :)
Thanks for posting! Are you still on both of these?
Thank you for uploading this! Can you recommend any exercises for core muscles? Thanks in advance :)
Wow! This is going to be extremely helpful. I've been doing a very limited amount of non-standing exercises, these ideas will really help :)
Australia also has Emergency ID Australia if you wanted to take a look at the LARGEST range in Australia. Great options for young people :-) Also can be found on Facebook!
Good work out thanks
Great work out for POTS thanks alot its been helping me
Ahh thank you for making this video! It's really interesting to hear about someone else's experiences with it. I have POTS too and am on 50 micrograms of Fludro which I've been on for a week and it's not going well at all so far! I feel horrible on it. Glad it seems to work for you though x
What about pool exercises for people with POT's? I get overheated very easily and the pool tends to keep me cool. Would love some suggestions!
@hotsypotsymamaof2 i made a video reply for you, hope it helps! fludro (in high doses) has been my wonder drug which is kinda weird since i have more of a hyperPOTS but yeah, fludro and ivabradine r my wonder drugs :-) hope it works for u too, or u find something that works good soon!!
@ThorDogk9: Indeed!
My main concern with the proliferation of information is that not all of it is medically sound and that a lot of the info in journals is quite complex if you don't come from that background and can be easily misinterpreted. Plus the whole just because it works for one person doesn't mean it will work for others issue. As a group we also tend to have multiple comorbities that complicate the picture and vlogs/blogs and forum posts are simple a snapshot of a complex individual profile.
Hi Kate, well said. I think we often get so caught up in the maelstrom of wanting information, treatment etc that like you said, we forget to live. I know early on I was so focused on Bob that life was passing me by. Now I deal with it when I have to, like now, and the rest of the time I try to just find the joy in life. It's a chronic condition with no easy fix and you can drive yourself nuts searching. It's a hard balance to maintain, but a very important one. :)
It's the big picture. I do respect that people want to know varying amount of info. I so really do understand how important a diagnosis is, I just worry sometimes that people get so caught up in that that they (myself included sometimes) forget to live.
I appreciate your view on POTS and I do not wish to change that. I personally though think it is very imporant to know what type of POTS a person has, because treatment is different for each type. I feel there is nothing wrong with having either view, if you feel happy no knowing the cause, then this works for you and no-one needs to challenge that. Flipside of that is, if others need to know what type they have and seek information this should be respected also, like your view is respected.
not florinef, since im not on it hehe. thinking it may be dihydroergotamine! the evils of POTS meds i tell u! make me functionable but kill off my liver!
which drug seems to be causing problems? Is it the florinef? My doctor told me that they do not like to use it longterm :S