Libby

I'm so glad that you're getting answers. Poor kid. Someone once described a tilt test to me as "the suckiest experience ever" and it's definitely up there. Having to go through a positive tilt test is no fun at all, but add asystole? I hope she's feeling better soon. It can take a while to recover from the stress of the test (I was dragging for about a week I think), if you notice her a bit more symptomatic. And I'm relieved you and your husband are holding up ok through it all. I know it's got to be stressful, but it looks like you're doing all the right things for her. Stay strong.

Just happened, so I thought I'd reply to this while it was still fresh in my mind. I got careless. Stood too still for too long, I guess, but it's kind of irritating that 5 minutes is now my 'too long' Hopefully it was just an off night. Anyway, my stomach starts to cramp and I feel way too hot. I start dripping sweat, which is attractive. And I get really cranky, lol. That goes on for between 1 and 10 minutes, depending. I usually sit down before I start sweating and that's all I need at that point to stop it. If I ignore the nausea and the sweating and keep standing, then my throat starts to tighten like I really, really am going to throw up. My vision gets brighter and I can't focus my eyes - the world kind of tilts. Around now is when my bp starts to drop by 20+ points at a time. I can feel it happening. Bursts of coldness, starting at the crown of my head and whooshing down my neck, and I can just feel the blood draining. Yuck. I can feel my hr slowing too, and I'm not going to lie, a part of me is freaking out that I'm dying. The adrenaline from my freak out is usually only enough to give me a jolt of pins and needles through my arms and chest, but not to speed up my heart. If I stay on me feet after that, then my hearing starts to go - a high pitched hum/roar. My vision goes white, I lose muscle control and that's that.

Another thing that might be worth considering is that after you eat, your stomach diverts some blood to help with digestion. I know I've had problems with low blood pressure after eating (post-prandial hypotension). Feeling nauseous and cruddy to begin with, then having your bp drop again can definitely set you off food. I saw your other post about the July 5th testing. I hope you get all your answers there. It sounds like you have a doc who gets it, which is fantastic.

Exhaustion has been a huge problem for me lately. My job sometimes requires a lot more time on my feet than I'm used to. I can do it, as long as I make sure that I'm never just standing still (at the very least, flexing/clenching my calves) and that I've taken my midodrine. Doesn't stop me from getting kind of stupid after a little bit, but it's not a job that really requires my complete attention so it's not a big deal. But I pay for it afterwards. I am just out of it afterwards for a good 10-12 hours. Yesterday, I gave myself a 'break' from a few meds so I could just lay around on my day off. Hello bad decision. I've been having insane nightsweats for the last week or so, and I really just wanted to get some sleep...By yesterday evening I was seeing double I was so exhausted. Definitely got my sleep...and I have a feeling I'll be getting a lot more of it over the next few days.

They're starting to become a real problem. I started getting them very rarely after starting prozac two years ago. Once a month or so, if that, so I dealt. Since the beginning of the year they've been increasing in frequency, but about three weeks ago - a couple of weeks after starting midodrine - I started having one or two a night. Air conditioning doesn't help. And I don't know if it's the prozac or the midodrine or just another fun symptom of POTS. Anyone have a similar issue? I'm getting so, so tired of waking up damp at 3am, changing my shirt and sheets only to have it happen again 3 hours later.

I go from 95/65 before midodrine to about 115/75. Sometimes a little higher. That's with 7.5mg of midodrine. Midodrine helps a lot with the pain and is definitely worth it. I find it's not as effective with stopping my skin from turning blue. I hate the pooling, almost more than any of the other symptoms...I was interviewing for a job today and I wore sandals, totally wasn't thinking. Midway through, I noticed my feet were purple. I spent the rest of our conversation just trying to keep my feet as far under my chair as I could, praying no one would notice. It's so frustrating.

The exact same thing happens to me. I'll have it all through my legs/feets/hands when I'm walking around after a shower too, especially if I go a little too hot with the water or if the midodrine is wearing off. I assume it has to do with POTS, with the veins not tightening and being stretched by too much blood. Makes me wonder if one day they're just going to pop.

Dysautonomia is a general name for a class of syndromes (POTS, IST, NCS etc). The lines can be blurred between those individual disorders, as some have symptom overlap and no two patients' symptoms are identical. Using the term dysautonomia just covers all your bases. As for something else accounting for heart and digestive problems...there's no other explanation that I can come up with (though I'm not a doctor, so that might not mean much). I don't know if you watch the television show House, but a point that they beat you over the head with is that the best and most likely accurate diagnosis is the simplest one that accounts for all the symptoms. Coincidences, like having two completely unrelated things going on at the same time, don't generally happen. It's only a tv show, but it has a good point. I started having symptoms of dysautonaumia (NCS and OI) when I was 13/14. They told me exactly what they're telling you, that it's normal for young girls to have low bp. But there's a difference between having low blood pressure and run of the mill teenage laziness, and having low blood pressure that significantly affects your ability to function. Other things started to crop up and soon I was diagnosed with inappropriate sinus tachycardia, reynauds, ADD, asthma, other arrhythmia, anxiety...They also tossed around things like Lupus and RA. Absolutely ridiculous to think that a young girl would have all that going on without a common denominator involved. I was 24 before any of the primary care doctors paid attention to the blacking out and ordered a TTT. (Less than 15 minutes on that table and I had met the criteria for both POTS and NCS) The specialist I went to after that, on the other hand, took me seriously from the start. And she actually treated patients with POTS, which was a huge step up from my primary who had never heard of it. My point is that general practitioners are trained to recognize common illness because they're, well, common. The rare stuff doesn't even come to mind as a diagnosis most of the time. Even with the rare stuff that docs have actually heard of there are problems. My cousin's pediatrician spent 2 months insisting she had the flu before finally diagnosing her with leukemia. Because in 99 out of the 100 other kids, it WAS the flu. If you and your daughter feel that what's happening to her is not normal, it probably isn't. I think it'd be a good idea to see the specialist. If it is dysautonomia, you'll get a confirmation, a treatment plan and peace of mind. And if it isn't, you'll have someone who probably will be able to point you towards someone who can give you an answer.

I'm glad it helped! Trying to figure out what's happening, what's normal and what's not, can drive you crazy. There's so much about dysautonomia that's easier to pick up on with hindsight. I went in for my TTT b/c I was blacking out immediately upon standing. I thought the test would be a waste of my time, honestly, because I thought all of my symptoms came and went in the first minute or two. I never had connected the nausea and irritability I had while shopping/walking; I assumed they were due to low blood sugar. I'd sit down, have a drink and a snack and feel 100% better so I brushed it off. It didn't even occur to me (until after the TTT) that maybe it was the sitting and not the snacking that was actually helping. It might be worth it for your hubby to be on the look out for any symptom he felt during the TTT cropping up in his day to day life, even if he's already attributed it to some 'normal' cause (like low blood sugar ). I'm so sorry both you and your husband are being hit with this stuff, especially at the same time. And your son. Poor kid, having a genetic double whammy. Has he had a TTT?

I was diagnosed with NCS without ever having fainted outside of the TTT, too. I've been diagnosed with orthostatic hypotension as well, so I can give you my take on what's going on. The difference between the two as far as I understand it is timing and severity of bp drop. Without midodrine, when I stand up (especially from laying down) my bp drops immediately - I get dizzy and my vision blacks out, but I've never passed out. It's happened for so long that I've just gotten used to walking around my room blind for that time. After a minute or so, my bp stabilizes and my vision clears. The NCS, in contrast, happens between 10-30 minutes of standing and it's a much more severe drop in bp. But a few minutes before it happens, I feel nauseous and crabby and overheated. All I want to do is sit down. So I either do sit down, or I do something (a lot of the time unconsciously) to get the blood moving out of my legs and back to my brain. Fidget, bounce in place, pace etc., preventing a faint. I look at NCS like a reset button. If the brain's O2 supply gets diminished - like when you stand up and gravity pulls the blood downwards - it tries to to compensate automatically. Tightens leg veins, speeds up heart rate etc. For some people, that's not enough. The brain is still oxygen deprived. NCS happens when the brain reaches a point where nothing it's doing is really going to make up for the oxygen deficit and the body is ignoring/not hearing the "SIT DOWN NOW!!" cues it's sending. The pull of gravity on the blood, which increases when you stand as opposed to sit, is the major issue here. So the brain figures that if you're not going to listen and sit down on your own it will take the control out of your hands and MAKE you sit down (er fall down). And it either dilates your blood vessels (dropping your bp), drops your heart rate or a combination of both, depriving itself of oxygen to the point where it CAN'T function and you can't choose to stay standing. You go down, eliminating the pesky gravity problem, and your brain gets all the blood it could want. The fainting response is actually beneficial. It's what you hit on your way down that the real problem.

I totally hear you. My tolerance has been dropping at a pretty regular pace over the last few years. I can still drink a couple beers if I'm willing to spend the next day feeling kind of cruddy. I'll get a wicked fast heart rate. I can control it with my beta blocker, but it's not something I really enjoy. One of my closest friends is a big partier/drinker. She just can't wrap her mind around me not wanting to go out with her (and get wasted) every weekend. It's frustrating.

Does anyone else get them? I checked the side effects and couldn't find anything like it. Within ten minutes of taking midodrine, I'm giving off more heat than my furnace. My chest and the back of my neck mostly. It usually doesn't last too long, but it's weird. Last night I had a dream that POTS had put me into menopause 30 years early. That was fun.

Mine was pretty low. 3 or 5, something like that. It's crazy how overlooked this deficiency is. I took a course on vitamin D and cancer in grad school, and even they (the MDs who taught it) were adamant that your body only needs 30 minutes of sunlight a day to make adequate levels. Maybe they should, um, actually test a few of their patients...

I was just coming to the board to look for/start a topic like this. Great minds. Yesterday I had an echo, and there was a new girl learning how to work the machine. If she hadn't been there, I doubt the instructing nurse/tech would have said anything out loud, but she made a point of asking the new girl to check for MVP in my records, because there was flattening of the valve. My last two echos were both normal, with the most recent report specifically saying 'No MVP'. My (new) cardio mentioned hearing a click. I saw my GP just a few weeks ago, and she didn't mention any click so I'm hoping the defect is just so minute that only a trained specialist could pick up on it. And my old cardio was an idiot, so I wouldn't be surprised if it were missed. Anyway, I'll know more after my follow up next week, but I'm pretty sure I have MVP. Mitral Valve Prolapse Syndrome seems to have a lot of overlap with POTS. I wonder how many of us have MVP...

That's really awesome that you're looking into this. I'm interested in what you'll dig up. Here's my timeline, as best I can put it together. At 13/14, undiagnosed NMH started causing problems. ("It happens to everyone; you'll grow out of it." I love that one.) My grades were good in school, but looking back it was because I was very, very lucky. I never could concentrate long enough to study or really do my homework, but things that interested me stuck with me - any, by some miracle, most of my classes DID interest me. The only thing that could get me focused on a task was time pressure, so I did most of my homework the period before it was due but it always seemed to work out. I could also bs my way out of anything. That helped. At 20, I was treated for IST. I'd always had a fast heart rate, but one day it suddenly got worse. I'm not sure if I was mildly POTSy before that and it was just a symptoms jump or if this was the true start. I do know that my ability to compensate for my forgetfulness/procrastination started to go down. When I was 23, I finally went to get evaluated for ADD. I was driving myself nuts, losing things and not paying attention in class. My mother and brother both were diagnosed a year or two before, and it runs in families. The psych diagnosed me with it pretty easily. Then, at 24 the POTS symptoms got suddenly worse. So did my concentration. After a bit of legwork, it finally led to a diagnosis of POTS and NMH. My primary doc suggested that the ADD is fully POTS related, but I think that I do have ADD. POTS definitely worsens it, but it was around long before any dysautonomia symptoms. It was always a running joke with all my friends that I had ADD. Even back in first grade, I was flakey. I handed in a half finished math test, not because I ran out of time or couldn't figure the problems out. I just forgot to finish it. Also, I noticed a definite difference in what the adderall was doing. When I first started taking it, before POTS started being a real problem again, I could focus. I mean, it was like night and day. The best example I have is that I was able to concentrate and stay on task long enough to organize my bedroom and closet. May not sound like a big deal, but it was HUGE for me. I have never, ever been even the slightest bit organized, no matter what I tried. I think I cried when I was done with the room, I was so happy. But after POTS started acting up again, I got the adderall dose increased to help deal with the mental fog. It helped wake me up, but it wasn't like the mental switch that flipped when I first went on adderall. It was more like a strong cup of coffee after a sleepless night. I hope that helps.

Propranolol and I didn't get along too well. It was the first thing my GP prescribed for the tachycardia, about 4 years ago. Propranolol just made me too tired, and getting my brain to work was like pulling teeth. I went off it before I reached a dose that really did anything to my heart rate - I figured I'd rather have the tachycardia, but pass my classes. I mentioned to my new cardio a few weeks ago that I was on propranolol and hated it. She said she wasn't surprised and that propranolol crosses the blood-brain barrier, accounting for the annoying mental fuzziness. That said, it looks like it works for a lot of people. Different strokes for different folks, I guess. I'm on metoprolol now. 150mg - nothing below that seemed to slow my hr, unfortunately. But it works, I'm reasonably coherent , and it doesn't drop my bp (which was already low to begin w, so I totally know where you're coming from on this). Have you tried the propranolol yet? How has it been going?

I've been on florinef for about a month. 0.1mg didn't seem to do anything so, a week ago, my doc increased me to 0.2mg. Headache. Ohhh, headache. My bp is up around 105/68 - 112/73, which probably does help with the pre-syncope but I can't say for sure because I'm too busy concentrating on the headache (and ignoring the nausea that comes with it) to pay attention. Another thing I've noticed is that my feet turn hideously purple. Standing, sitting normally in a chair. They went blue before, but never this deep a shade. I read that florinef sometimes takes some time to adjust to. How long a time, for anyone who had problems with it and stuck it out? Because I'm kind of ready to poke my eye out. If it's still like this tomorrow, I'll probably call the doc and throw in the towel. Advil's not touching this thing and it's been here, on and off, for 3 days. I prefer blacking out.

Oh, what an awesome friend! Coffee and drugs. Mm. I totally felt like a junkie with how quickly I went for my pills. LOL. Ack! Rach, that sounds awful! I'm so, so sorry you had to go through that. I'm at about 80% right now. The extra physical fatigue backed off after a day or two, but my head still doesn't feel quite right. I came back to reply at least half a dozen times, but my brain was just having none of it. And if the ringing in my ears doesn't dial it down soon, I'm going to strangle someone. Possibly myself.

Went off them and I took the test. Ten minutes in my diastolic dropped to 20. I stayed conscious, but oww. Wicked hangover. But I've got my official diagnosis. POTS and NMH. Thanks for the advice everyone. I'm so, so glad that I won't have to retake that.

Phew! Good to know. Thanks for the replies! It's mostly my fault. I have some sort of weird mental block against admitting that I'm anything but 'really good, thanks for asking!'. Incredibly helpful for my doctor, I know. LOL. I managed to google myself into a bit of a freak out. That site should carry a warning - hazardous to your sanity if overused.

I've been poking around the forum, trying to get a feel for it all. Turns out my perception of what's 'normal' and what's a symptom is waaaay off. I have been writing off symptoms as just normal quirks, or my imagination. None of them really make day to day living impossible, and no one seemed to be concerned if I mentioned one, so I just got used to ignoring them. It looks like I really minimized my symptoms when speaking with the doc and I'm afraid that when I go back for my followup with all these 'new' things wrong, I'll look like I'm a hypochondriac nutcase. I'm just trying to get a handle on what I should be paying more attention to. Are any of these connected to dysautonomia? The symptoms I've read about just seem so random and unconnected that I don't know if I'm being ridiculous or oblivious... - little jolts of electricity in my arms. Don't happen all the time. They're not painful, just strange. - when I turn out the lights and my pupils dilate, my left eye feels weird. I can't even really describe it, no pain, just weird. And my night vision is noticeably poorer in that eye (I have glasses for distance, though I rarely wear them - and my left eye vision is slightly better than my right) - eczema, initially with matching patches on both sides of my body (underarms, eyelids, and hips - now only on my right underarm and right eyelid) which started out of the blue three years ago, - mouth ulcers - muscle twitches (under the eye, my thumb - small stuff) - foot cramps. really painful ones where I have to physically pull the foot out of the cramp and hold it to get it to stop. - a constant, high frequency buzz that I hear pretty much constantly. It gets worse when I blackout, but mostly I've learned to ignore it. Don't notice it much unless I'm somewhere quiet. - leg/arms fall asleep very easily. Legs from sitting, arms usually when I'm actually sleeping. I'll wake up and everything from my shoulder down will be completely numb. - my fingertips turn cyanotic after I eat. Not every time and not for a long time, but it happens. - every once in a while, for a second or two, I'll smell a wood burning (this happened today, but it was the first time in a while. I almost forgot about it otherwise. One that I'll def be mentioning at my next appt.) Thanks in advance for any replies.

It seems everywhere I look around here, I find another symptom that I just assumed was, you know, normal. Pale skinned? Makes sense that I can see all my blood vessels through it, right? Right. LOL. Or not. I'm of absolutely no help with the 'why', but it happens to me too. Has been for as long as I can remember. Congratulations on becoming a grandma! She sounds darling.

Wow. Thanks for so many replies! This place is so amazing to me. People who understand. I was told that near-syncope was normal, happens to everyone, when it started happening in my early teens. I heard that answer enough times that I just took it for fact. And I was called a hypochondriac enough times that if I didn't have a fever and I wasn't gushing blood, I just assumed it was normal. Fatigue, exercise intolerance...purple feet. That I was being a wuss and whining about things that everyone else was dealing with perfectly fine, so I stopped mentioning it. Now, learning that it's not in my head and that it's not normal...I just want an answer. Something to call this thing-that-I-didn't-imagine, a place to go from. But, back to the TTT. I tried talking to another person, explaining, and I got brushed off again. I don't know how else to say that it's worse without the meds, at least not in a way that will get my point across. It'd be funny if it weren't so annoying. So I started dropping down the BB and adderall a few days ago. The metoprolol is going to be the least fun part. Oh, I'm going to be cranky. Rach, they said that I was supposed to fast for four hours prior, nothing by mouth. That will probably mean I'll have nothing for at least 12 hours. The test's around noon and I'm really not a morning person.

I called the number given on the info sheet and spoke to a person in the stress lab. She acted as though she was the person to ask. I had asked my PCP when she prescribed the test and she told me to ask the ttt people.

Hi there! Newbie here. I had intended to just do a quick 'hello' to start with, but I'm having a bit of a problem so I thought I'd ask. I'm scheduled for a tilt table test in a few weeks and I called to see what I should be doing with my meds. I've just recently been steered towards POTS, even though I've been having symptoms for as long as I can remember. I've been sort of addressing them individually as they crop up. I've got metoprolol for the tachycardia, and adderall for ADD (I was diagnosed adult ADD, which I think is legit, but adding in worsening 'brain fog' is what finally made me get a handle on it). The adderall I take as needed, the beta blocker I take daily. Anyway, I called the cardio and the woman I spoke with told me that both are fine to take the day of. That doesn't sound right to me. Both affect my HR, which is a big part of what they're looking at with this test, right? I just don't want to come back and do this whole process again because I'm preventing the reaction they're trying to provoke. It doesn't seem like all that much fun.