blueroses79

Thanks for posting this poll! I came here wanting to ask the same question! My own BP is high-normal, usually. Systolic is around 140, diastolic usually around 110-120. When I go in for gynecological appts. it goes even higher. They refuse to prescribe me any estrogen containing birth control for this reason, and usually freak out. With my home monitor I can't discern any lowered BP effects of feeling dizzy. It consistently drops around 30 points when I stand, but does not get dangerously low unless I've actually passed out. Then it's usually around 70/50. This makes me super confused about what treatment I should be pursuing. Oh, and I voted "swings too high and too low," though "higher than avg" is probably a better description. My BP when I've actually fainted probably shouldn't count as a 'swing.'

I'm profoundly sensitive to humidity, and only slightly sensitive to heat. High humidity makes me feel weak, regardless of temperature; I get the 'overheating' sensation if the humidity is over 75%. (Though my BP isn't actually lower overall, as far as I can tell, when it's humid--it just has a sharper drop when I stand up.) And my migraines are sensitive to barometric pressure changes, so I'm a total mess.

Thanks for your replies! I forgot that I needed to subscribe to the thread to get email notifications of responses. I'm going to try some licorice root tea to test the waters. Given that my sodium is normal, my potassium is already low, and that I'm super estrogen-sensitive and have prehypertension BP most of the time, I'm very hesitant about Florinef. I'm thinking about traveling to see a specialist, too, as I don't really want to keep seeing this Dr. even if I do end up using Florinef. She had a point--but having such a bizarre nervous system makes me super paranoid about anything I do to affect it. (And if I do try it, I'm definitely cutting the pills into quarters!)

So, my cardiologist and neurologist have come to the end of their scientific knowledge, and told me a prescription for Florinef is the closest thing to a solution I'm going to get for at least 50 years.... (Seriously.) But I'm hesitant to start taking it, since it seems to give a lot of people headaches, and migraines are actually a much bigger problem for me than dizziness is. And my orthostatic hypotension is really only a problem for me when I've had no sleep, or when it's humid. So I'm wondering if it's something I can take just when I need it.... or whether it's like antidepressants in being something you shouldn't start and stop.

Don't know if I'm the only one, but humidity is a much bigger problem for me than heat. I actually like heat, so long as the humidity's not too high. But humidity above 80% gives me all-day OI, even in the winter. I get a lot of blood pooling in my hands and feet, too. It feels like I'm overheating if I so much as move. (This leads to me going out ridiculously under-bundled in the snow, even!) I describe it as feeling exactly as if I have a fever, when, I presume, BP is low, and standing makes me feel hot and dizzy. Now if only my cardiologist believed in all-day OI....

Results of my Tilt Table Test: I passed out immediately when the table was tilted up, probably prompted by the IV, which they refused to do the test without. (Needles inserted while I'm lying down still prompt that response, though I can have my blood drawn sitting up with no problem.) My blood pressure dropped by half. My heart rate increased (I *think*). And the cardiologist said my eyelids twitched a little. It was like I was dreaming while I was unconscious. This cardio apparently doesn't do diagnoses of POTS, or anything more complicated than OH or NMS....the last of which she's suspicious about because, as I've said, I feel weak for a long time before I faint (I was feeling 'likely to faint,' this morning), which she says doesn't fit with a "cardiogenic" phenomenon. She prescribed Florinef. That's about as much as I can hope for from a non-dystautonomia specialist, I guess. Of the blood tests she did, she's only reported that my potassium was low and my aldosterone normal. I hope the neurologist I'm seeing next month knows something about dysautonomia....

Interesting! I would be willing to believe this if this is what my docs decide is going on. Thanks!

Firewatcher, do you think your dysautonomia is related to your DSPS? I'm curious whether mine might be.....

Good to know! I don't have Ehlers-Danlos that I know of, though I am extremely flexible. I guess it's a good thing that I'm not exactly suffering--so I don't plan on taking any anticonvulsants until I'm truly convinced that I need them. The biggest problem this causes for me is dizziness when I have to teach or take classes in the mornings (which I mainly avoid). My tilt table test is at 8am, so it should be all kinds of weird.

Hi Everyone! I'm new! I'm curious whether anyone else has had a similar experience. I've had dizziness and fainting during heat, humidity, and standing up since I was 6 (outright fainted 2 or 3 times before college, always standing up someplace hot or humid). My pediatrician didn't think it mattered, so I ignored it. I still have it, of course. It's much worse in the mornings. (I'm an extreme night owl, too; and the feeling that comes on when I get sleepy is definitely a low blood pressure feeling--I feel weak and a little nauseous and don't want to stand up.) The fainting 'prodrome' can be really long, though; I might have dizziness on and off for 15 minutes, on one occasion a few hours. In those circumstances I feel like I have a fever--hot (humidity alone makes me feel 'overheated' like this, btw), and a little queasy. When I do faint, I'm unconscious for 30 sec. to a few minutes, don't move or lose control of anything, am not conscious, and have extremely low blood pressure. The last time I fainted my blood pressure by the time the EMS arrived (when I was feeling better) was 70/50. What's complicating this is that one of the more recent times I fainted, I took up the EMS on their offer to take me to the hospital for testing, since I'd never pursued this medically. The only abnormalities were low potassium, OH, and suspicious temporal lobe activity on my EEG (which was basically a sleep deprivation EEG as I hadn't slept--being a night owl is hard). To me, it seems like the EEG is a red herring, as I can feel the blood pooling in my limbs when this is going on. I've just started seeing a cardiologist (tilt table test next week) and have been referred to a neurologist for further testing. But I'm worried neither of them will hit upon the weird intersection of neurology and the cardiovascular system that is dysautonomia. (Or I suppose it could be a weird migraine phenomenon, as I have those too; but dizziness and migraines rarely seem to overlap for me.) The cardiologist has said that it's uncommon for cardiovascular fainting to have such a long 'prodrome,' and rarely starts at such an early age. So I'm wondering, does anyone here have dysautonomia that started early in childhood?