Tag Archives: POTS

Stories about living with postural orthostatic tachycardia syndrome (POTS)

Cheyanne: Living well with chronic illness

This week I would like to welcome Cheyanne from Hospitalprincess.com to the Living Well with Chronic Illness series.

Cheyanne has Ehlers Danlos Syndrome Type 3, Mast Cell Disease, Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, and Fibromyalgia. The Ehlers Danlos Syndrome is primary, while the others are secondary. The diagnosis that interferes with her life the most is Mast Cell Disease.

Continue reading Cheyanne: Living well with chronic illness

Rachel Gorman: Living well with chronic illness

Living well with chronic illness… How acupuncture, Chinese medicine and Yoga can change your life…

Rachel Gorman was diagnosed with idiopathic POTS, fibromyalgia, gastroparesis, Hashimoto’s thyroiditis and a multitude of other ‘opathies over a 4 year period from 2012 to 2016.

Continue reading Rachel Gorman: Living well with chronic illness

Living with Dysautonomia and EDS – Chapter 9 “Adrenergics Anonymous”

What it feels like living with dysautonomia and EDS – like I’ve joined “Adrenergics Anonymous”!

Adrenaline, my adrenergic tendencies and I have become very acquainted.  It’s my side kick in life.

It’s a bit like your favourite tipple at the pub when someone asks ‘what’s your poison?’.  You lap it up at the time but suffer from the effects of it big time when you’ve done it to excess.  And having had to live with the excess side of things since 2014, when my body just went completely haywire, I’ve become quite knowledgeable about its impact.

Continue reading Living with Dysautonomia and EDS – Chapter 9 “Adrenergics Anonymous”

Could it be POTS or Dysautonomia?

Exhausted all the time? Dizzy? Anxious? Could it be POTS or dysautonomia?

It can affect you at any age and there are many reasons it can present itself. Perhaps your doctors haven’t been able to put their finger on what’s wrong or you still feel something is amiss? Could it be POTS?

The following article about a young man and his journey to get diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) will provide some interesting insight into what this form of dysautonomia is and how, to the untrained eye, it can be missed.  Continue reading Could it be POTS or Dysautonomia?

How to get Diagnosed with EDS and Dysautonomia – “Google Saved my Soul”

My story of how I got diagnosed with Ehlers Danlos Syndrome (EDS) and Dysautonomia – “Google Saved my Soul – but I’m Still a Little Bit Mad”

OK I’ve been saving this one up. Stewing on it and cooking up my mad woman.

Hence attached photo of angry woman – she is how I feel on the topic to come.   I make no apology for the length of this post, it’s reflective of the time it’s taken me to get the correct diagnosis of EDS…

Prepare yourselves, especially if you’re a general practitioner/physician…. Continue reading How to get Diagnosed with EDS and Dysautonomia – “Google Saved my Soul”

Living with Dysautonomia and EDS – Chapter 6 “The Goldilocks Plan”

“The Goldilocks Plan” to living with dysautonomia and EDS.

Living with dysautonomia and EDS has been a massive rollercoaster.

The downs have been many but I wouldn’t have made it through the last two years without the ups.

The ups are simply those gorgeous people around me who have helped keep me sane and to feel cared for.  Numero uno, my husband (who does just about everything there is to do around here), then there are my children (for forever giving me something to laugh about and for just loving their mum), my family (for being there during the tough times and helping me in whatever way I needed it) and, finally, my friends (the rock stars who have stuck by me and not put me in the ‘too hard’ basket).

This last year has also been about developing what I’ve now called my Goldilocks recovery plan.  So named because quite simply it’s been about finding out what’s ‘just right’ for me.  There has been much trial and error!

This last year has been about developing what I've now called my Goldilocks recovery plan. Click To Tweet

Here’s the list of my do’s and don’ts which hopefully should help others suffering from dysautonomia and EDS. Continue reading Living with Dysautonomia and EDS – Chapter 6 “The Goldilocks Plan”

Living with Dysautonomia and EDS – Chapter 5 “Me Wiring is Off”

What living with dysautonomia and EDS feels like – “Me Wiring is Off”

When things went wrong 18 months ago, it felt like a malfunction, like the machine went wrong or like the accelerator got left in the on position.  Well yesterday I got validation this is indeed correct.  It’s called neurally mediated hypotension. Da dah! Continue reading Living with Dysautonomia and EDS – Chapter 5 “Me Wiring is Off”