bunny

I get this as well. I notice my heart rate will drop precipitously upon sitting as well. I'll go from 120+ down to 60-70 in a matter or 2-3 heartbeats and the pressure in my ears and chest gets quite intense. It then fades away over the next minute or two. I've always had it though, so I'm not particularly worried about it, just annoying and uncomfortable.

I'm not on meds. Tried a few different ones a few years back at the insistence of my cardiologist. Overall, my body appears to be a fighter. They'd try to "correct" something and my body would defiantly do what they didn't want it to do even worse than before. There were a couple of times where the meds made my vitals appear "better" but I felt worse, so I stopped those. Haven't been on any meds for 6+ years now. I think BigSkyfam is doing the right things. I'd also suggest walking / standing around as much as possible. I'm on the road quite a bit due to my work. I've noticed that when I'm in urban environments where I'm walking to everything and/or have to stand around a lot, my symptoms and vitals actually improve on their own. Just from my own experiences, I don't think anyone will ever be 100% with meds. They don't give the body the opportunity to heal / build itself back up. I DO think that getting darn close to 100% can be done for some people without meds though.

FWIW, I've had this on and off over the years. Due to a Clostridium difficile infection which wasn't going away, after 9 months I finally was able to get a bacterial transplant done. Since that, the twitch has stopped. Not sure what the connection is, but I throw it out here for people to ponder. It was becoming more frequent and was very annoying towards the end.

I just had one last week 100% WITHOUT sedation. Not even an IV saline drip. Would I do it again without sedation? ABSOLUTELY. After I left there, I headed straight to work and put in a full day. I actually had more energy than I knew what to do with when I left, which was probably due to being up for 36+ hours straight. Tips for this: 1) Find a GOOD GI doctor. The one I found was an absolute gem. Kind, gentle, soft-spoken, and most importantly -- he listened! HE was very concerned about my cardiac / POTS issues and we talked for a good 45+ minutes about ways to modify the procedure to have success without my heart acting up. He scheduled me as his last patient for the day (which was still 8:30am) thus he could take however much time was necessary. 2) Have them use a pediatric scope. Yes, they can still see what they need to. It's just a narrower field of view and takes a bit more time and skill to use it. They can still get the images they need. 3) Have them use water instead of air to inflate the colon. This will make a huge difference in your comfort level and it won't adversely affect their ability to see what's going on. If they say otherwise they're full of it. Unfortunately for me, this wasn't an option as we really weren't doing a colonoscopy but were instead doing a bacterial transplant to cure Clostridium difficile and the best way to get the new bacteria to where they need to be is a colonoscope. Same basic procedure as a regular colonoscopy overall though. I won't say it was painless. In fact at two separate points it was rather bad -- BUT those points lasted for 5-15 seconds each and then I felt fine. I'd yelp, the doctor would pause, a nurse would rub and press on my stomach, and when the pain subsided we'd continue. They had a clock on the screen and I'd just start counting to 3 over & over again when in pain, figuring I can handle 3 seconds of anything. My doctor said using water instead of air would have made all the difference. Even at that, the entire procedure was far less unpleasant than I was expecting. If anything, the bowel prep was far harder on my body (and me) than the actual procedure. There were two points where my BP/pulse/O2 sats dropped: 1) when they went to draw blood and put an IV access port in my hand. I was alright for about 60-90 seconds, then I started dropping. 2) When they finally reached "the end" with the colonoscope and had put more air in. Lots of pressure (and pain) then after 10 or so seconds the pain subsided but my vitals started dropping. I almost passed out but managed to hang in there. We had all basically planned on me passing out and the plan was to continue with me passed out unless my vitals really started to tank. As far as the fecal bacterial transplant goes, to give you an idea of how effective it is: 15 minutes after the procedure they were asking me if I wanted anything for breakfast or lunch. After battling C.diff for 9 months, it was cured. I'm still in disbelief and still distrusting my body, but even after a week I'm still doing well. Just frustrates me how many doctors I had to go through before I found one which acknowledged it was C.diff and was willing to actually cure it rather than keep trying failed antibiotic after failed (expensive) antibiotic.

Oh, the ultrasonic descaler is pure evil. A few years back I went to a new dentist and the hygienist went to clean my teeth with it -- yeow! After just two teeth that was the end of that. We've tried it a few more times and nope, it's not going to work for me. Similarly, I have major problems with the angle of the chair. My head has to be above my body or else I get very dizzy and nauseated quickly. On epi, I've traditionally not had problems with it, but my current dentist is too leery of my body, so we usually go without. They usually slap a pulse-ox monitor on my finger any time I'm in there for anything and use my pulse to determine when it's time to take a break or change techniques.

I've always had mild tinnitus throughout my life. BUT they put me on vancomycin earlier this year and it greatly increased the loudness of tinnitus in my right ear. VERY annoying, particularly with it being lop-sided now. Mine's loud enough that even driving at 80 mph on the interstate still isn't loud enough to cover up the noise. For me it's a very high-pitch whine which just never goes away. Sometimes it will get louder, usually when I'm tired, which is the last time I'd ever want it to be that way.

Jangle: What happens if you were to carry hand weights? Any changes in your performance and symptoms? I wonder if load matters more than intensity (speed) / duration.

I don't see this being used in regular practices, but I do see large applications for this in the research labs. It'd be simple to implement, probably easier than snot to get a grant for too. Just need to find a doctor who is willing to give it a try (good luck on that one).

Not sure about dysautonomia specifically, but with anorexia nervosa, both long Q-T intervals and bradycardia are very common, particularly with severe cases. Long QT intervals seem to scare cardiologists quite a bit.

Ramakentesh: Interesting observation. Orthostatic hypotension is a major issue in nursing homes, usually due to blood pressure drugs and old age, but I don't recall seeing POTS in the elderly population. Makes me wonder if this is a "new" disease caused by something external, or is it something which only affects younger people?

I'm surprised at how varied, yet uniform the responses are. In addition to the symptoms, I'd love to see this broken out some way, some how (I'll have to think on this) with how often people experience each symptom. 30% get syncope, but I'd love to know how often. It's one thing to pass out occasionally; it's another to pass out multiple times a day. Still, very interesting.

Barometric pressure doesn't seem to affect me too much, but I also love storms, so that probably helps a bit. I've also never had a headache in my life, which I definitely think has something to do with it. My gf gets migraines and barometric pressure is definitely a trigger for her. Humidity absolutely kills me though. Too much and I can't breathe and get dizzy very easily. Too little and I get the chills. ~35-48% humidity seems to be the sweet spot for me.

Not at all here, but also had anorexia going on from ~12 years old onward through most of the growing years, so I might be a bad example. Despite being 6'2", my bone structure is extremely thin/small. Wrists are tiny, hands are small for my size, but long fingers. Normal-sized feet though.

I started losing hair around 16 years old, seemed to get better for awhile, then started falling out again ~25. Both sides of my family have male pattern baldness and I also was severely anorexic back in the day, so multiple contributing factor. Still, worth looking into nonetheless.

Not quite after a week of bed rest, but after several weeks, yes. If you want to read all about it, there's a fun blog over at http://pillownaut.com . She's actually been a participant in these studies numerous times and goes into details about what the researchers did and how her body reacted. I'm not on my regular computer, but NASA has a research website where they've posted tons of data on these studies including protocol & effects. I do think their research could help a few of us; given the complexity of some cases I'm not sure it'd be the cure-all for everyone though.

Who has enough blood pressure for sex? Just being around my girlfriend often gets me interested and dizziness sometimes follows, even without physical contact or even us trying to be sexual. Kissing gets me terribly dizzy, so I often have to sit down afterwards. I'm not sure what's going to happen wedding night, but I have a feeling I'll probably be passing out a lot and we'll both be laughing about it.

I've learned to do things when my body's cooperating. Some weeks this means a couple times a week, other times it's every couple weeks. Slow movements, particularly when bending over to pick things up help. What really gets to me is having to reach for something above my head.

My pulse seems to have different "speeds" like an electric fan, rather than function like a heart. Case in point: My pulse when I woke up this morning was 48. Stood up and it shot up to 142 in <2 seconds. Wasn't feeling too good so I sat back down on the bed & my pulse dropped back down to 50. The same is true for exercise for me. 180+ isn't uncommon for me and my pulse doesn't always correlate with how intense I'm working out. As soon as I stop exercising, my pulse drops like a rock, ie: goes from 165 bpm down to 70 bpm in ~2-4 beats and stays there. Sometimes it'll go from the exercise speed, skip a few beats, then resume at the resting speed. It feels pretty gross when that happens. The only real correlation I've seen is the more exhausted I am, the more erratic & irregular my pulse is, but that actually makes some sense, unlike everything else my body does.

The only trouble I've had with blood draws is when they've taken too many tubes of blood. I'm fine during the draw, fine immediately after. It's when I go to stand up from the chair that problems happen. Seems like 3 larger tubes is safe. Anything beyond that requires some serious water/salt loading. As an aside, I actually did my own blood draw after waiting in the chair 20+ minutes for the phlebotomist to show up. We had just spent the past two weeks in class going over venipuncture (blood draws) and the order of the draw. Boredom & having had the nurse lay out all of the necessary materials next to me before leaving for 20+ minutes got the better of me. Ironically, it didn't hurt anywhere near as bad as I thought it would and for some reason I wasn't scared about it. Come to think of it, that was one of the most painless draws I've had and didn't bruise. Now that I've not had a blood test in ~4 years, I'd be nervous about having one again, let alone me doing it myself.

In Florida, the verbiage used on the application/renewal forms is "Have you suffered from epilepsy, fainting, or dizzy spells within the past two years?" The way I view it is that you're the driver, you are solely responsible for safe operation of the car. This includes: making sure the car is functioning properly you are healthy enough to drive (includes being tired) you are in the right state of mind to drive (not intoxicated, not inhibited by prescription drugs) and conditions (weather, traffic, etc). I don't think there is a single driver out there who hasn't been dizzy at some point in their life. If going by the "dizzy spells" criterion, most college students would be in trouble due to binge drinking, which is another problem in and of itself. There are times I've pulled off the road because road conditions+weather weren't good enough for my liking, and there've been times I've pulled off to take a nap. These are things most people have done at some point in their life. I keep a pulse/ox meter in the center console, and will check my BP if I suspect something's up. My mind's become quite adept at measuring how fast it's internally processing things and my driving reflects this with greater following distances and slower speeds when I'm not feeling so great. I also try to time my driving based on my body's cycles as well.

High fever is usually a telltale sign of infection. At the very least, inflammation. POTS related? Probably not. but POTS certainly isn't going to help the way you feel.

For the longest time there were 3 sets of medical records for me: 1) My copy, 2) Dr's copies which were shared with the insurance cos, 3) Dr's copies which were NOT shared with the insurance cos. When I see a new Dr, I will bring along copies of the relevant (and correct!) parts of my medical record for them. Most of the doctors don't seem terribly interested in them these days. As far as accuracy, it's scary just how incorrect they are! I've seen everything in mine from the wrong age, incorrect test results, even the wrong gender. The one which I took most offense to was a note of "past hx of subst abuse". I've never been drunk in my entire life, never have smoked, never tried drugs. The doctor just brushed it off saying "it's not important". If we had digital medical records, I could see that one right there costing me a job or security clearance.

Add me into the irregular sleep club. 'Though my sleep schedule is screwed up by my work & sleeping situation (on the road most of the time). When I get home and if I can get away with it, I'll sleep 10-12 hours. During the week when I'm on the road, It's anywhere from 2-5 hours. Sometimes it's enough sleep, other times it's not. And some days I'm just completely wiped out when I get home at night, to the point that I fall asleep anywhere I happen to sit down. Other nights it'll be 3am and I'm wide awake. Part of the wide awake issue for me is that it usually happens when I'm feeling good, so I'm reluctant to "waste" the time with sleeping. I'd rather take advantage of it to catch up with things.

I usually feel best when my BP's ~90/55 to 110/65. When it's >115/70, I feel iffy (dizzy, stomach not so great). When it's below 85/50, I feel tired. When it's below 80/40, I'm awake but dizzy and it's difficult to move. Somewhat similar situation with my pulse. Resting pulse of >80 bpm feels icky, 45-60 feels ideal, below 35 is a bit too slow. Extremes I've seen recently: 69/34 (laying down), 138/100 (waking up from a nightmare)

My dizziness varies but always increases with being tired. Usually I make it through most of the day without a problem but when I start to get tired it hits me. Naps also are quite rejuvenating for me as well. Anoj: on the "no stopping it" part, how much of a warning do you get? I try to budget my energy for the day so I don't hit this while I'm out or at work but there's a definite limit. When I reach that limit, I'm exhausted, dizzy, my body feels like it weighs a ton and I'll just faint/collapse right there.