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.
The 85/65 moment was a classic. Spesh said I should get him some sample bps so I’m trying to do the standing bp from getting out of bed in the morning. I need a pee. I’m normally supposed to do 3 measurements which, when I do it with the Spesh’s equipment works fine. Mine not so. It errored 4 times before it started working. So maybe that’s 3 mins standing. I decided to take two measures. Second measure I took saw a dramatic dive of bp to my boots and my heart rate increase from 60 to 130. Well, I felt so sick, I thought I was going to vomit there and then. So back in bed I fell and promptly reached for the beta blockers (they truly are my life savers). Sorry bladder you’ll have to wait until chuck central has calmed down.
I also had the return of a good old massive ‘panic attack’ on Friday – dry mouth, floppy head, shortness of breath, then racing tachycardia and high blood pressure. ‘Hello again old friend’ – been some time since I had one quite like this. Scared me half to death but I managed it. A lie down and my next dose of beta blocker (which I was a bit late taking) sorted that.
So at the moment the bp is too low when I’m quiet and too high when I’m busy. Feels like I can’t win. Trying to find the Goldilocks ‘just right’ formula is proving a little hard. I’ve had one little discovery though. After a month of not being able to exercise properly due to headaches and the hot weather, I have resumed and it’s proving to be quite effective at prodding the blood pressure up in the mornings. Though I still can’t do too much for fear of breaking into adrenaline overload territory!!
Spesh’s summary for me was that my body is behaving like an 18 year old and clearly, well, I’m not. Right. Thanks for that. I’m also a bit “brittle” apparently and he didn’t sound quite so certain he could fix it this time. Or at least malfunctions like mine can take a while to settle (if at all). So let’s see. I’m preparing myself mentally to guinea pig the Midodrine – feeling 50:50 about it honestly. Apparently it can give you some sort of prickly sensations on the arms and head. I’m imagining jolts of electrical impulses making me a jumpy nightmare. Great – more manicdom here we come.