Bridgerunner

I dunno, I can handle the sweating. I'm just scared that it will turn in not sweating at all. And that would be the end of running. And that would be horrible.

Does everyone here deal with POTS or orthostatic hypotension more than other symptoms? I feel so weird. So weird. I have some tachycardia when I stand, but it's tolerable. My heart rate does get pretty high with exercise, probably more/faster than it should, but not alarmingly so. I don't know anything about my BP, other than when I've been sitting in dr offices, they always remarked on how perfect it is, until recently, when it's kind of unstable and all over the place, but never alarmingly high. But I don't have serious problems with dizziness/greying out/syncope. I used to. It got better. But now I've developed serious GI hypomotility issues, crazy hyperhidrosis, and now seem to be getting issues with dry eyes. Along with a whopping case of neurogenic bladder. Sorry if that's TMI...I still am a little dizzy when I stand up, but it's no big deal. I can't possibly be the only weirdo like this, can I? Without minimal standing-up issues, but just about everything else gone haywire?

I'm not quite diagnosed yet, but a few weeks before my neuro suggested that it might be dysautonomia, I started wearing compression socks for running, and they helped so much. So much that it was weird. I don't know if it would make a difference in daily life, but I do have a lot abdominal bloating/distension and general discomfort, so I've ordered a supportive undergarment to see if that helps at all. I'm not hoping for much, but worth a shot. And I'm definitely going to get more compression gear for running and see if it helps with heat intolerance in the summer. Anything that keeps me running.

Thanks. I know that EMG doesn't generally include autonomic testing, but the notes my neurodoc sent me indicated he was requesting that autonomic testing be done along with the EMG. I'm really not clear on how that will work out, but that's what the note says. A specialist will have to happen later. I just spent three months waiting for an appointment with a neurologist at a university research hospital because my first neurologist didn't know what to do with me. I'm so burned out on new doctors. And I have two appointments this week. This is exhausting.

...and my very first post I somehow posted in the wrong forum. Sorry...if there's a way to move it... I'll just go away now :/

I hope it's ok to post a "hey there" post. I browsed a little and found just one...but it feels weird to lurk wordlessly after joining. I do not have a diagnosis yet, but I think I'm getting close. My new neurologist found orthostatic tachycardia, and I have an EMG next week, that I think will also include autonomic testing. Weirdly, I used to have moderately bad orthostatic intolerance, but it got a lot better. Now, I just have a little dizziness when I stand up, just have to move my legs around and twist up into a pretzel when I sit for long, or my legs feel heavy and achy, and my shoulders and neck ache. I always figured that was about posture and spinal alignment, but now I'm reading about "coat hanger pain" with dysautonomia, and it sounds awfully familiar. I didn't even start seeking treatment for the dizziness. I never did. It was really bad when I was having really bad asthma problems a couple years ago, and I figured it was just the asthma making me dizzy and feel generally ill and weak. Now I've read that it may have been the beta-agonists I was taking that made the dizziness and blackouts and near-blackouts worse. But I started exercising, and then running. And I started taking stimulants for ADHD (which apparently can help with orthostatic intolerance, because of vasoconstriction?), and the dizziness became more tolerable as I got more athletic. Which totally masked the tachycardia. I could never figure out why when I took my pulse first thing in the morning, it was in high 50's/low 60's, because of running, but at every doctor visit, it was in the 80's-100's. But I wasn't even seeing a doctor about the dizziness, which went from somewhat debilitating to mildly annoying, but because over the past year I've developed some pretty serious GI and urological symptoms. And tingling in my legs, and neck pain (coat hanger pain, really). And one of my legs is all messed up, causing a limp. I was afraid I had MS. I now know I don't have MS. I think dysautonomia might be better than MS...probably. I'm really healthy though, aside from a couple essential bodily functions no longer happen. I ran a half-marathon last Sunday. I don't have the kind of exercise tolerance I used to have, especially not in the heat, but I think I've been accidentally treating the tachycardia for a long time, just by doing standard runner things like taking tons of electrolytes, and running a lot tends to increase blood volume, and improves vascular health. So I'm fine, except for a slew of new symptom I have to manage. And total lack of diagnosis. And my neurologist suggested that I might just be crazy. And then I was doing some reading, and read about supine hypertension. And now I'm just scared. I very often get pounding headaches at night. I get frequent nosebleeds at night. I just wake up, veins throbbing in my temples, nose bleeding all over the place. So yeah, I'm starting to get a little freaked out. And try to sit back and wait for testing. And document how my heart rate is pretty consistently in the 60's supine, and in the 100's standing. I'm afraid to even say anything about my concerns about supine hypertension, because they all just think I'm crazy. I'm too healthy to be sick, apparently. Even though I'm having multiple systems failure. :/