Singout

Well, I'll start with cranky previous doctor first (he's in the same medical system but a different hospital) and I've got an appt w my GP. I already called the main intake for the cardio center where I'm doing the test, and they said they couldn't help me, but maybe I'll try again if I'm stuck and ask them to refer me to a doc. Thanks!

Aaaand...the doctor is on holiday till next week. I guess I'll try the doctor who prescribed them, but I think he'll be pretty hostile at the idea of me getting a second test. I've got an appt with my GP tomorrow, but I think this is out of her depth.

OK, I'll try--this is a specialist I've never seen, so don't know if he'll be contactable or not. My GP is great, but doesn't know much about dysautonomia (and isn't the person who referred me for this test).

I've got a second TTT in two weeks. The first one--over a year ago--was "normal," with an unsympathetic cardio. (I've had M.E. since 2008, and it got much worse in 2013 with what I believe to be neurally mediated hypotension.) He saw regular dips in my BP, and referred me to a BP specialist. He was a *bit* more sympathetic, and put me on Florinef first, which raised my BP, but didn't help my symptoms. Then he put me on Midodrine, after I pressured him, which helped a bit more. He refused to try anything else because my BP is now normalized. I'm getting a second TTT on July 10, and am wondering if I should go off my meds/salt water so I'll be back to ground zero. That's what David Bell says in his instructions for the "Poor Man's TTT"--he says go off them 2 weeks ahead. What do others think? Do I really need to go off Midodrine 2 weeks ahead--it seems like it's fast-acting. Thanks!

Thank you! I'll look into these. I should have said that my BP has been "normal" since I went on Florinef, but I've still had the symptoms, which is what is disabling. Can I have a BP that reads normal but still have this condition?

Hi, everyone, I've got neurally mediated hypotension (but not POTS) and have tried florinef, which didn't do anything, and midodrine, which helped a bit. However, since this started 1.5 years ago I'm still tired all the time, and can't sit/stand for more than an hour or so (with the stockings, abdominal compressor, lots of salt water...) I've also got M.E. which compounds this. Seeing my rather unsympathetic cardio tomorrow (I always leave these posts till too late!) and am wondering if there are other meds I can push him to try me on. Ones for people with high heart rate wouldn't be appropriate, though. Thanks so much!

I've definitely experienced sudden urgent needs to urinate with Florinef (or maybe the midodrine? I think the florinef )--it was worse when I first started taking it...just being hit by it suddenly. That's pretty much gone away, although it recurs from time to time. Embarrassing doing the "I have to go pee" thing when my parents are driving me to the cottage!

Thanks, everyone! I posted this Friday, increased the mido Saturday and Sunday and felt a lot better, and now am decreasing it again so I have results to share with my specialist tomorrow. Also did another at-home standing test with a friend yesterday with good results--my systolic BP dropped quite a bit, but I went longer without fainting than last time.

Hi, everyone, I've had chronic severe low BP that started about 16 months ago and has resulted in my being chronically lightheaded/dizzy, to the point that it's hard to stand for any length of time and uncomfortable to sit. My BP specialist (who isn't all that sympathetic and only wants to see my measurements normal, not my symptoms improve) put me on Florinef, which didn't help, then kept me on Florinef but also put me on Midodrine, (last August) which seemed to help a lot. Maybe this is just an aberration, but for the last 4 days or so the lightheadedness is back full force. I see the doc on Tues (coincidence--he only sees me every 3 months or so). I'm wondering if the Midodrine (2.5 3x/day) is no longer working and if there are other things I can suggest trying, or if this is just a blip. I *don't* have a high HR, so shouldn't be on meds that lower my HR further. Thanks!

Thanks, everyone, I've had sinus problems since my M.E. started 6 years ago (my orthostatic intolerance only started just over a year ago but made life much, much worse.) Saw two specialists and a CT scan, all "normal"except a slightly deviated septum. Several naturopaths and acupuncturists. Right now my naturopath has me on oregano oil spray, which is powerful but hasn't made a real difference so far. Will look at these links for more ideas...

Just experiencing this (unless my meds are OK and there's something else awry) in the last few days. Scary!!

That's really interesting, it was several brief drops in my BP (although I couldn't feel them) that got my TTT doc to send me to the BP specialist. He couldn't explain them, however, and seems quite happy to (unhelpfully) shrug them off.

Thanks for this, Bird, I have the same problem. I got neurally mediated hypotension (not POTS, just low BP) over a year ago with a bad M.E. crash and have been housebound ever since due to the (old) fatigue and (new) lightheadedness. The unsympathetic (at least to M.E.) BP specialist here put me on Florinef, which raised the BP numbers but did nothing for my symptoms. Then also Midodrine when I pushed him (I wore flight pants to the appt!) and small but not larger doses of that seemed to help a bit, but not totally--today is a super-bad day, and it's been getting worse over the last few weeks. He was reluctant to put me on Midodrine b/c he's only interested in the numbers, not the symptoms. Sigh. Looking for ideas to take in that he might consider. Good to hear about the oxygen therapy.

Hi, everyone, This is my first post: I've had ME/CFS for 6 years, but have only had postural neural hypotension (although I haven't got a clear diagnosis of that) for one year, when my ME got a lot worse, sending me from a pretty normal life to being housebound. I've been doing a lot of work since I got really sick last year on getting more info and tests, about both ME and dysautonomia. I'm getting a submaximal anaerobic threshold test done on Thursday--to check when my body shifts from anaerobic to aerobic energy--and am wondering if there's any connection between this process and the process that causes PNH. Does anyone know? I'm getting the test done at a sports facility (usually hard core athletes want to know this!) so I'm not counting on them to have a lot of medical info. Thanks!