gtg287y

I'm really confused...I'm trying to tell you that I don't think blood pooling is a problem at all for me. Walking doesn't stop me from fainting...squeezing my legs doesn't stop me from fainting...sitting doesn't stop...no position I'm in STOPS me from having symptoms... Trying to exert myself at all past my limit makes me faint, and when I have symptoms my limits go way down. Tensing myself all up might give me something to focus on, but if it pushes me past my limits, I go down. The only thing that seems to help is laying down, and it doesn't stop or reduce symptoms, it just stops me from fainting (because I'm already horizontal).

Slowing down, yes, but "slowing down" to a normal rate from something that's higher than average? And do you mean I didn't faint with the holter moniter because I was more active, or in general? *confused* If anything, the more active I am with symptoms, the more likely I am to faint. If I don't have symptoms, being active MIGHT stave them off in the future (that's my hope, anyways), but it's never a good idea to move around when I'm likely to faint.

I guess I can put more effort towards getting a BP reading during a fainting spell....any tips for actually doing it though? The home machine I have takes far too long for me to be standing up during it.... Or would just taking my blood pressure while laying down be just as effective? In general, when I have symptoms, and FEEL close to a faint, the readings are completely normal (if anything, I've noticed my heart rate is closer to 70, when it might normally be around 100). It's frustrating that other than an occasional high heart rate, I seem just fine, other than feeling miserable most of the time, and fainting... I keep hope that my readings during an actual faint will reveal something...but they're so impossible to predict! When they had me in a Holter, I went out of my WAY to push myself, and expose myself to suspected triggers, and the most I got was a hint of symptoms. So frustrating... I've kept track of actual fainting spells, and the symptoms around them, as well as near fainting episodes, etc, but I hadn't thought to keep track of what the doctors were saying/doing. Might be a good idea, thanks for the advice, nowwhat! Thankfully, I don't have to worry about driving just yet (a combination of college, then fainting kept me from ever officially getting my license), but one of my goals is to control my fainting enough that a license is possible. *sigh* Shan, I agree...my family doctor has been wonderful (he was the one who caught the initial high heart rate)...but I'm really not all that sure about his recommended EP Study (which involves a cardiac ablation? *shudder*). I didn't like the heart doctor, that's for sure, and experiences like that (for several years with several different specialists) have left me just sort of burnt out on doctors... But hearing other people say I should probably continue the search does push me in the right direction...

I did, and in general, my blood pressure was pretty constant regardless of position. My heart rate tended to go up more when standing, but usually not much over 100 bpm. I haven't ever tried monitering my blood pressure while actually having symptoms, though (mostly because standing up long enough to have my blood pressure taken is usually not a good idea).

Heh, it's even worse when you used to actually HAVE an anxiety disorder (PTSD for me, which I worked through after a lot of blood, sweat and tears). The symptoms showed up just on the tail end of my struggle with anxiety, and doctors would see my chart, raise their eyebrow and start with "Have you considered....". It was so frustrating. I KNEW what anxiety and depression felt like for me, and it was nothing like the collapsing/exhaustion/fainting spells I was dealing with. (If anything, anxiety had a WHOLE lot more energy than my fainting spells did ;:angry: I guess I can sympothize, because anxiety OFTEN takes the form of unexplained high heart rates, hyperventillation, etc. But to just assume ANY undiagnosed similar problem is anxiety...that's unexcusable. And even worse to assume that if it's "all in your head" it doesn't require any treatment! I would say the BEST thing to do in that situation (as a doctor), is to systemically try a variety of treatments (INCLUDING psychological) until something sticks, and THEN speculate on how "real" the problems were.

BACKSTORY: My Problem: I get sudden, and often unexplained onsets of a variety of symptoms (usually symptoms appear in predictable clusters... I am often dehydrated, confused, fatigued and light headed all at once, while I get chest pain, nausea, difficulty breathing, grey outs and vertigo together). These symptoms can last several hours, and often repeat for several weeks or even months. Sometimes certain foods or environment conditions (hot dry heat, for example) will give me an isolated case of symptoms, but generally I get them in clusters, around the warmer times of the year (if they start in spring, I'm usually okay by fall, but if they wait until summer I can be suffering until winter). When I'm experiencing symptoms, I get exhausted very easily, and have found that "pushing myself" makes me likely to outright faint. Sometimes "pushing myself" can be as simple as walking, standing up, or even crawling. When I faint, I usually immediately regain consciousness, but if I try to get up at all (even sitting), I'll faint again. I'm usually very, VERY dizzy afterwards, and need to rest. I USUALLY faint while walking, but it's not unusual to faint while sitting, crouching, or crawling. I have never fainted while lying down, but often have symptoms get much worse (to the point where I'm pretty sure getting up will make me faint even if I wouldn't have when I initially lay down). I've had a variety of tests over the years (EKG, Holter Moniters, EEGs), but nothing really turned up. There was some brief excitement when I went to the doctors immediately after fainting at work a year ago (and hadn't yet recovered), and fainted again while they were checking my pulse. My pulse was around 110 when they started, then I fainted, and they checked it immediately and it was around 140. They carried me to an EKG, but by then my heart rate was normal, and the test came out fine. I got sent to another heart doctor, with the possibility of a "EP Exam" (didn't sound fun), and this doctor said it wouldnt' be necessary, and that I probably had "common fainting", or vasovagal syncope. I felt frustrated, because it seemed like the heart doctor hadn't been listening to me. The way he described it (and internet research seems similar) is that you pass out because the blood in your legs is pooling, and your blood pressure drops. All well and good...but how does the blood pool in my legs if I'm sitting cross legged? Or lying down? Or crawling? He told me to drink sports drinks, and do training by standing up against a wall and flexing my legs. He also said that if these things didn't help, to come back in, and we'd see. Sports drink have helped (though if they've helped more than water, I haven't seen it...staying hydrated in general helps). I'm not so sure about the leg flexing...especially since I (regretably) dont' keep up with it much because I'm confused as to how it will help... QUESTION: Does this actually SOUND like vasovagal syncope? Is my understanding of it mostly being about blood pooling incorrect? Is my understanding that symptoms are usually only while standing up incorrect? Do clusters of prodromal symptoms that persist no matter what position I'm in make sense in the context of vasovagal syncope? If it doesn't sound like vasovagal syncope...does it sound like ANYTHING? Should I go back into the doctor and see if there is any thing else they can do, if it doesn't sound like vasovagal syncope? Should I just continue to try to minimize it's effect on my life, and accept it? I've pretty much lost hope in doctors, after years of no relief...

If anybody knows anything more about doctors in Atlanta, I'd be grateful to find out, too. -Jenny

I would see a specialist if I could find one ;; I'm near the Atlanta area, and haven't really found one, yet. *ponder* Although i haven't even looked on my insurance website to see if I can search for doctors who specialize in that. I'm going to try that. Thanks for the idea! No meds right now. My heart doctor just said excersize and drink powerade, and if I still had symptoms, to come back. Well, I do still have symptoms, but I really didn't feel all that confident about his bedside manner, so to speak... so I want to have something concrete in mind before I try that. I hate feeling like I'm wasting people's time, especially when it seems that they think I'm doing so, too. -Jenny Edit: A quick search and no, my insurance provider doesn't let me look for dysautonomia. Is there a particular branch of medicine it might fall under? Neurology, cardiology? Pathology?

Thank you They've done a stress echocardiogram on me, and said that things looked fine (and I believe them). If anything, they said that I was very good at getting my heart rate to raise quickly, which a lot of patients have problems doing, apparently. (I kind of thought it was ironic, though, because I was having the test BECAUSE my heart rate goes up too quickly). Nobody's done a TTT. I mentioned it to one of my cardiologists, and they said it would be a good idea, and that they'd try it after my heart moniter was finished. When it was finished, they dismissed me without even trying it, though. I felt pretty annoyed. My latest cardiologist, the one that says it's vasovagal syncope, said that he doesn't believe in TTT, because of how many false positives and negatives they get (he claimed that over half of all people who undergo a TTT faint, even if they have no history of fainting). No one has mentioned CFS, it's good to hear about it. A quick wiki on it seems like there's no real way to diagnosis it other than by elimination, though. Is this true? If so, I think it might be more trouble than it's worth to try to convince my doctors to check it out. There doesn't seem to be a clear cut treatment method, for it, as well. If I DO have it, would I just sort of be back at square one, trying to figure out how to live my life? The website you provided is not one I've seen before, and it seems VERY informative (thank you!). It interests me that it mentions that POTS involves the increased heart rate, without any additional heart symptoms. Thank you for taking the time to get back to me... I've been pretty worried about all of this, and it helps to be able to sit down and put my thoughts in order, and know that someone will *listen* rather than frustrate me like my doctors have been...

I was recently diagnosed with Vasovagal Syncope, but I'm not sure I agree with it. I have two distinct sets of prodrome symptoms (chest pain, difficulty breathing, dizziness, nausea, feeling cold, headache) and (fatigue, confusion, dehydration, restless sleeping). Both lead to collapse if I'm not careful. The first happens when I'm sitting, and worsens when I'm standing, wheras the second happens when I'm laying down, or otherwise near sleep (usually during the day). Both seem to be worsened by heat, stress, dehydration (but I only feel badly dehydrated with the fatigue one) and certain foods. I also have a high heart rate (sometimes over 130) when standing, but this strangely doesn't seem to relate to any symptoms I might be feeling (except that when I stand up and my heart rate IS normal, I actually am more likely to get dizzy, etc.) When I do collapse, I lose consciousness for only a second or two, usually being awake as soon as my head hits the ground. There are a few times I might not even lose consciousness at all. Either way, I always remember starting to fall, and then being on the ground. It's the time in between that is often fuzzy. Details of my symptoms are as follows: A little over four years ago, (age 19), I was preparing some food, and accidentally spilled a large quantity of steak seasoning onto the food. I ate a few bites anyways, because I had nothing else to eat. Within the hour, I started having major problems. I kept graying out, I couldn't breathe (my boyfriend, who was with me at the time mentioned that a few times it seemed like I stopped breathing entirely), I felt flushed, and had severe chest pain. I WAS, however, coherent enough the entire time to prevent 911 from being called. That is, I have no memory of overtly losing consciousness. Afterwards, with a quick google search, I concluded that it was probably the MSG in the seasoning I had used, seeing that breathing and chest problems occur in some people after eating it (though I noticed that there was some controversy about this). However, immediately after this episode, I found myself EXTREMELY sensitive to heat, especially in the bath or shower, feeling dizzy, generally 'out of it' and even collapsing a few times after getting out of the bath. I slowly learned to minimize my symptoms near heat, usually by preventing myself from overheating, and staying hydrated. This was in the fall. In March, I collapsed for the first time outside, while walking from a class. It had been a hotter day than normal, and I was wearing a thick jacket, anyways. I remember being confused, disoriented, and feeling dizzy before I finally collapsed on the pavement. I only blacked out for a second or two, and was fine (if dizzy, confused and unable to get up) for a little bit. From then on, my collapsing spells seemed to come at random. I couldn't find a correlation between food, or stress, (at least at first). For the next year or so they tended to cluster around fall and spring, and my conclusion was that both times of the year I felt hotter than usual (in the fall, the heat starts running in most buildings I'm in, yet I still have to dress warm enough to walk outside, and in the spring, I'm still used to wearing warm clothing, and yet it's heating up outside). I tended to feel breathless, with chest pain, headaches, and severe fatigue (I would often sleep for hours after an episode, very fitfully, often times partially waking up and sleep talking or walking). I also noticed that the months where I was more likely to collapse had my resting pulse higher than normal (it was usually in the 70-80 range, but in spring and fall I would notice it was in the 90s, while sitting at one of those pharmacy blood pressure machines). When I went home for the summer, my parents had me go to a general practitioner, who diagnosed me with migraines, because of the severe headache I often felt following a collapsing episode (though at this point I believe it's MOSTLY from my head hitting various hard objects, rather than being an important symptom (although sometimes I legitimately start off with a headache)). My parents didn't agree with the diagnosis, so I was taken to a heart doctor (who put me on an even monitor for a month (no results, but then I never felt like I was going to collapse). When that showed nothing, I was taken to a brain doctor, who also found nothing after a week of monitoring. Since I wasn't collapsing any more, and I had no symptoms, it was dropped there. Late that summer, I started collapsing again, while working in a very hot kitchen, eating salty food every day (from the kitchen) and drinking very little water. I concluded that salt in general, not just MSG might be a problem for me, and started limiting it in my diet and drinking a lot of water (I also went to an ear doctor at that point to see if it was Menieres' syndrome (it wasn't). I decided to accept the original diagnosis of migranes as I learned a bit more about them (they aren't just bad headaches, for one), and lived my life up with this assumption until this year. I'm now graduated from college, and working a full time job, since December. In March, I collapsed at work, despite every precaution (and since then have collapsed over six times, and had symptoms even more frequently (44 times), even over the summer). A nurse on scene at work mentioned that my pulse felt VERY fast, so I went to a doctor immediately after collapsing to see if she was right. A quick EKG said that my heart was fine. I went to a heart doctor, wore a monitor, (this time for only two weeks (and again, barely any symptoms), with no results. However, this time something was different. The second time I collapsed at work I went straight to the doctor again (he was just down the road), and collapsed a SECOND time right in his office. (Generally if I force myself to get up before I'm ready, I will collapse again). They managed to get a record of my pulse both before the collapse, and just after. Before it was at 110, and after it was at 137. This convinced my doctor that I had heart problems, and scheduled an appointment with a doctor to see if an ElectroPhysical study would benefit me. Meanwhile, I'm a bit freaked out about the heart rate, and buy one of those athletic real time monitors to see what my hearts been doing myself. I find that my heart rate usually goes over 120 when I first stand up, stabalizes to around 108 while walking, and is in more 'normal' ranges of 70-90 when sitting, and can get as low as the 50's while laying down. Some days I found it get over 130 or 140, just by standing still long enough, or raising my hands. But the weird part is, I NEVER felt any symptoms at all when the heart moniter said my pulse was so high. Rather, I found it the opposite. If I stood up, and my heart rate didn't get over 95, I felt like my heart was pounding, I felt dizzy, and grayed out a bit. That is, if my heart didn't do what was 'normal' for it, then I felt the symptoms. When I went to the heart doctor, he listened to about half of my symptoms, then said it was Vasovagal Syncope. I didn't feel like he really took the whole picture in. He asked if I was normally standing up when I collapsed. I said ?yes?. But I didn't get a chance to mention that the symptoms usually START while I'm sitting or even laying, that the worst symptoms happen while I'm laying down and then suddenly fall asleep and start sleep talking and stuff, that I'm most likely to collapse if I get up from that. I didn't get to mention all the times I've collapsed, tried to crawl somewhere safer, and collapsed a second time with my head as far down as I can get it. When I mentioned the high heart rate he said that it was irrelevant, and just a sign that there were things wrong with my system, and that the REAL reason I collapsed was that my heart rate was getting 'far lower' than the 50 I'd seen as my low. He told me to increase salt, drink sports drinks, and do leg things, and dismissed me. I tried to protest that I'd found that salty foods make things worse, and he said that MAYBE I was allergic to MSG, but there was no way salt would make things worse. I didn't really think he was right (I mean, I know salt gives me a headache, and can start a lot of my symptoms, if I'm not careful)... BUT, I did listen to him. I've been doing the excersizes, I've been drinking powerade... And nothing is getting better, even after several months. The only reason I haven't collapsed at work a third time is that I'm more careful about not getting up if I feel the symptoms. But I'm feeling the prodrome type stuff just as bad,, and collapsing as much at home as I usually do. I just don't know... Should I keep doing what he said and hope that it works eventually? Is there anything else I can do? Any other thing I should get checked out? I'm most worried about the fatigue... I can feel fine, energetic even, and then suddenly be on the verge of collapse because I'm so tired. And BECAUSE of how tired I feel, I can't think straight enough to remind myself to get water, or to avoid walking and stuff. If I do manage to find a place to lay down, I'll sleep for hours and hours, only to feel worse when I wake up... dehydrated, and muzzy. And THOSE symptoms are completely different from the more standard 'vasovagal' ones my doctor paid attention to. If I collapse without fatigue, then it's chest pain, greying out, difficulty breathing, etc. Maybe some dizziness and nausea thrown in... Stuff that the internet says is pretty standard for vasovagal syncope. Does anyone else here have vasovagal syncope, or know if my fatigue set of symptoms really match? Should I keep pursing this until *I* am satisfied? Or is it possible it really just is vasovagal syncope? I mean, my heart has checked out fine so far, my brain seems to be fine... The general doctor seemed worried that I had a tachardia, that my heart was fine most of the time, but would sometimes go out of wack. He said an EKG wouldn't show anything wrong, if that were the case. Should I be worried about this?