Batik
Rookie
Offline
Posts: 17
Scotland
|
Oh yes. Lots of poor man's TTTs. The problem is that I've done them at home, so they don't count according to the doctors I've spoken to. Nor, in fact, do the times when doctors and nurses have checked my HR, which I was hoping would prove my case that my resting HR is not usually around 90. Here's an excerpt from the letter I'm composing to that specialist.
---------------------------------
Here is what is more typical for me, using a blood pressure monitor recommended by the British Heart Foundation.
Lying down - heart rate usually in 60s, sometimes 50s or 70s. Sitting - heart rate usually 70s, sometimes 60s or 80s. Standing - anywhere up to 120s.
Heart rate changes from lying to standing, various times in the morning, not standing up for long:
11 Feb - 63 to 101 17 Feb - 55 to 95 21 Feb - 62 to 96 8 March - 63 to 103 9 March - 64 to 98 10 March - 67 to 101
When I've managed to stay more or less upright for longer (not this week, as I'm getting a lot of pain in my feet at the moment), it's dropped a bit after that, and then taken anywhere from 2 to 15 min to rise that high again, although sometimes it's just steadily risen, sometimes going up to 123 or so. My blood pressure usually goes all over the place after I stand up, e.g. from 109/62 to 142/116 at 4 min and then down again. Usually my pulse pressure goes both up (e.g. to about 132/70) and down (e.g. to 90/75) after standing. I also tend to get quite low blood pressure, sometimes down to 75/40, though I've had higher readings such as 167/103 and 152/62. This is all since going on the antihistamines and some of it since going on the other meds - it was worse before this, but I wasn't monitoring it. I've had quite a lot of collapses, numerous blackouts or whiteouts, and a few times where I think I actually lost consciousness during a fall.
---------------- (end of excerpt) Yesterday I was having a really lousy day, due partly to not getting enough sleep (woke up early, heart thudding and breath tight, and the day just went downhill from there), and I think I may be running a bladder infection. Temperature was all over the place, I've not been that chilled in a long time, and then suddenly I'd be roasting hot and pouring with sweat and would be desperately pulling off the big pile of blankets and electric heated blankets and such. Anyway, that was one of the occasions when my resting HR actually was that high, mid-80s to 90. So I tried another PMTTT. I managed to stay standing for this one, and my HR went up to 109 after 1 min, 119 at 9 min, and kept rising until 123 at 20 min, at which point I gave up. This is probably what would have happened on the day of the 24 hour ECG if I hadn't falled over after 2 min.
A lot of people have been saying I should get checked out for EDS. It's starting to sound like I should. Things that various people have mentioned which apply to me:
* I have a first cousin with EDS and some form of tachycardia. * I can't do those moves listed as primary markers for hypermobility, but I can sit in a W. When I was a teenager and exercising regularly (though mildly), I could sit in a W and then lie down as well. * Local anaesthesia is a problem. Last time I was at the dentist, she had to use four shots before it took. (Is this really an EDS marker?!) Also this could explain why lidocaine ointment does absolutely nothing for me. * I've got dry eyes. Relatively mild, at least compared to my mother, who has map dot fingerprint dystrophy and gets recurrent corneal erosions, which are hellish. I really hope those aren't hereditary. * I've been vaguely diagnosed with fibromyalgia, though only by my GP based on my reporting more pain. This includes joint pain. I've not seen a rheumatologist. * I have tendon problems, not sure if that's relevant. I have calcific tendinitis in both shoulders, and what I've been told is RSI (repetitive strain injury) in both hands and forearms. * Flat feet. * Problems with proprioception, especially when the ME is bad. I never let people help me get down the stairs, for instance, it's too confusing and it makes me more likely to trip. I need to hold the bannister in one hand, my walking stick with the other, and have good light and lots of space around me. We've had problems with support workers helping me dress because of the proprioception stuff.
Support worker has arrived for the day, so I'll have to go now, but is that any help?
|