What living with dysautonomia and EDS feels like – “Up and Down like a Yoyo”
After 4 months on Florinef we decided to part company. The last month has been too hard – too many headaches, too much fatigue and a blood pressure that was a little high for Spesh’s liking. So I’m now week two, another two to go before we possibly try Midodrine, and it’s turning out to be a bloody nightmare. Mad swings from high to low blood pressure giving me all sorts of grief. Within one day last week I was fluctuating between 85/65 and 150/110. Continue reading Living with Dysautonomia and EDS – Chapter 3 “Up and Down Like a Yoyo”
What living with dysautonomia and EDS feels like – “The Poo Truck”
My wham bam health issues appeared in November 2014. However, looking back, before my ‘tsunami’ of symptoms hit, a slow trickle of odd symptoms had appeared. I’d been under quite a bit of stress from a job for a period of 6 months and I had a few odd, isolated bodily symptoms occur (which I can now recognise as the early warning signs). I had weird aches in my hands, I was thirstier than normal, I was wired and tired, I got the shakes when under pressure and I started getting weird nightmares on top of insomnia (Dennis the Menace flying spider kind of nightmares). I then experienced the ‘oh god I feel shit I must be unfit’ after pilates (come on?) and I had my first proper almighty so-called panic attack (an ambulance job). But many of these were simply explained away as stress related reactions.
Then I sealed my fate by visiting some hot springs for the day in late November 2014. Continue reading Living with Dysautomonia and EDS – Chapter 2 “The Poo Truck”
What living with Ehlers Danlos Syndrome feels like – “Pushing through Fatigue”
I just watched a really informative video by Dr Alan Pocinki who specializes in treating patients with Ehlers Danlos Syndrome (link here). Whilst it is specific to EDS and people who have hypermobility the themes in here are very relevant to anyone who suffers from fatigue so read on… Continue reading About Ehlers Danlos Syndrome – “Pushing through Fatigue”
What living with dysautonomia and EDS feels like – “Supercharged out of my Head”
Yup you guessed it, another shitful attack. God, this body is a pain in the neck.
My meds were changed 3 weeks ago because of adrenaline issues, I had reduced my meetings and the intensity of my exercise program and was doing really well.
Then I changed something. Moved my usual morning exercise to the evening last night, evidently when the impact of my glory wonder drugs were at their lowest, and had a sleep from hell. Continue reading Living with Dysautonomia and EDS – Chapter 1 “Supercharged”