morgan617

I think you may find the majority of people feel exactly the opposite, so I am not sure people will have a lot of advice for you. The best I can recommend, which is what it always is, is maybe some short term therapy for both of you. To change these behaviors you guys have developed to cope with your illness. Good luck sweetie...morgan

I can barely tolerate bright lights, whether outside, or flourescent. On the other hand, I become very disoriented and dizzy in darkness. It's a fine line for me. I have to have a night light on or I will inevitably kill myself falling or crashing into stuff. morgan

I believe most of us think you are born with the predisposition. We don't know, we just believe you are. If you weren't you wouldn't develop it. I'm not sure it can be proved, but it's like other illnesses. Something at some point triggers it, or it just happens, but we are born with the gene mutation or whatever causes it, in place. I think this may be what you are referring to? Things that wouldn't affect a person who is not already prone to this, wouldn't develop the problems. People can be predisposed to many things. Sometimes they never develop that thing and sometimes they do. My family is predisposed to Sclera derma (a disease in the Lupus family) but my aunt and sister are the only ones to have it. Hope that makes sense...... morgan

Angela, I was rejected from Mayo, Vandy, and NIH. It was a few years ago, and at the time I felt my world had come to an end. It didn't and after a bit, you just move forward. Sometimes the doctors you think are going to save the world and your life, aren't and don't. I have struggled for many years, but today I truly don't feel that spending the money to go would have changed the course my life has taken. There are other doctors out there and they don't have to be someone "famous" to help you. They just have to believe in you and be open to new ideas. If I can find a few, I truly believe anyone can. I still get frustrated, but I don't believe I would physically feel any different, had I spent all that money and time. I was just rejected by yet another doctor in New York, for a sort of unrelated problem, and I was upset for a few days, but then realized it was his loss, and his insecurities that were the problem, not me. I sent him a letter telling him that , in my own unique way. Allow yourself time to grieve and then move on....things will happen as they are meant to. good luck sweetie, morgan

beta blockers, but you generally have to play with them to find one that works..perseverance! morgan

Thank you doctor guest, I take my meds, don't do hot baths, don't drink caffeine or alcohol or smoke, so figure I can have my house anywhere I need it...like 77 is good for me. I will pass this along to the hubby, I'm sure he will apreciate it too! LOL sorry, loopy from gastro this am.... morgan

Garsh, thanks ! My favorite thing to do, ever, was teach patients what was going on with their hearts. So many were so terrified, and felt so much better when they actually understood what was going on. I used to take a strip of a normal ekg and theirs and explain it to them. It was the best. I know many people do understand the ins and outs, but many don't, so I am always happy to explain, unless I don't get it either. Nina, your symptoms sound very similar to mine. I know when mine is ventricular, because it just knocks me on my bum. Literally. It isn't even like it's painful, although it makes me feel sick, quickly, but it's just such a gross feeling! My heart looks okay on echo also, but structural is not always an indicator of electrical. You can have the greatest looking heart in the universe, but it doesn't mean it doesn't have "shorts" in the electrical system. That's such a large part of the problem I think. I had a heart cath that was "relatively" normal, so the cardiologist said he didn't want or need to see me again. But not having clogged arteries has never stopped the well documented arrythmias. So there are many aspects to it. Coronary disease, (clogged arteries), structural problems (malformed valves, chambers that are too small or big, muscles wall abnormalities, etc) and the electrical system. One part can be fine, but one or both of the others not so fine. One doesn't neccessarily contribute to the other, but it can. So, it's important that your cardio take all aspects of function into account when evaluating problems. And I do flush and can feel my BP skyrocketing when having problems. My hubby can always tell when I'm not doing well at all, because of the major flushing, and many medical people do comment on it. Makes my neck veins look like a rope a dope too. Yuck. Since I developed tachy-brady and required the pacer, I have taken the largest dose of a beta blocker I ever have. If I didn't have my pacer, however, my underlying rythym would be around 30. Off the atenolol, it's 140 and will drop to 30. Or vice versa, but the larger dose of beta does help a bit with the major BP surge that causes that flushed awful feeling. morgan

Thanks pat, I thought of that...after my appointment, of course...der. I will get a clearance and my need for baby food for any flight over 2 hours. Thanks! morgan

Oh Ernie, I am so sorry! This disease is so awful and sometimes it never seems to end. I am glad your brother is in the hospital where he belongs and the clots will be dissolved soon. All meds come with side effects and warnings, but sometimes the good outweighs the bad. Only you and your doctor can decide whether you should stop these meds that help you. You have been on them for awhile, and not had problems, so that is hopeful. Please keep us updated on how things are going as you can. morgan

I know most people with POTS have arrythmias, but for the most part they are atrial. My mother had 2 episodes of sudden cardiac death, the first in her 40's and the second in her early 60's killed her. So it does make me a bit nervous. It's very hard to know what to do, when blown off by electrophysiologists. I did work in an ACU for 11 years and we saw post infarcts, open hearts, and many many arrythmias. I actually worked on the end that dealt more with the arrythmia aspects of people, drug therapies, and EPS. We got all the internal defib patients. The other end dealt with transplants and more open hearts. It was awhile ago, but we didn't sit around waiting for people to go into vtach to do anything. They were at least on meds. This sustained and not sustained thing has developed since I left the hospital and got sick. We had no rules that you had to be in vtach for a certain amount of time before it was a concern. When the monitor tech said so and so is in vtach, we didn't stand there and say, well has it been going on for 30 seconds? That is just so weird to me. I had ablation in 2003. They did find an abnormal area, but it was not an extra node, it was just an abnormal area of tissue, which they ablated 27 times, and still didn't kill the whole thing. It was over the top of my right atrium. There was no testing for ventricular ectopy. I think when you have documented vtach, polymorphic, or whatever type, it desrves some type of investigation. Occasional PVC's, no problem, documented vtach, check it out. I don't think a doctor having runs of non sustained vtach would say, oh well, what ever. My ablation was a huge mistake, but it wasn't for anything ventricular.....It's just hard to know what we have and ER's are not the place I want to go. 90% of the time, they don't even put me on a monitor. When I went to the Er for my long pauses, I was there 4 hours and they hadn't even run a single strip, let alone had someone watching it. We were lying there listening to my alarms going off for heart rates of 30 and below, not one person came in for 3 1/2 hours to see if I was okay. So i guess none of this should surprise me. Sounds like WPW to me cardiatech, or something along those lines. You are in the age group and it's polymorphic. I can't see fixing WPW making your POTS worse, as they aren't messing with atrial rhythms. morgan

It could well be that Nina, however, there is one type of of an svt which does start very suddenly and ends very abruptly. Paroxymal Atrial Tachycardia. That ending thump is a normal span, but since your heart hasn't been filling up well, it feels like a big thump. It's just very hard to tell, unless on a monitor, but once you've seen it, and associated it with your symptoms or sensations, you recognize what is going on. Whether from the ventricles or the atrium. As cardiatech said, they can feel the same, and some don't feel them at all. When I was having 7 second pauses, I never felt my heart not beating, I just went down like a bag of taters. If I was lying down however, I could tell from the thump after the pause, something was happening. If it's a fluttering sensation, it's typically atrial, as Angela said, vtach can feel quite forceful for a bit. But so can hyperandrenergic tachycardia. Flop, I'm not sure what the accepted protocal is for sustained versus non sustained vtach. When I was working cardiac, vtach was vtach and you didn't mess around with it. They must have some sort of guidelines, but I am guessing the main one is how well it's being tolerated. I'll ask my cardio at my visit, which is coming up shortly and let you know. It used to be if someone had a run of vtach, you started a lidocaine drip...oh the times they are a changin.....morgan

I think that's what I was attempting to say in all my meandering Nina! Thanks for putting it in a more pithy way! morgan

Nina, I have distinctly different sensations. If I am having v stuff, it always is so annoying and pronouced, it makes me cough. Always, even if it's my pacer kicking my ventricle in, I will cough with it. I usually don't feel my atrial stuff, if I do it's a much smaller kind of thump. Have you ever had that feeling your heart has flipped over? That may be ventricular or just a very full one from an early atrial beat. I discovered from monitors mine is ventricular. The best way to tell, I think, is how symptomatic you are. You are going to feel really bad in a very short period of time if you are in vtach and it's not stopping. Where as with tacycardia, you get fatigued, maybe a bit of chest pressure, but you will probably, or do, tolerate it much better. I have had a few patients that never felt anything with either and some feel horrible with either. But even the people that didn't feel their vtach didn't feel well very shortly after onset. Typically, you will get very symptomatic very quickly with a sustained vtach. Our bodies are not made to handle it at all. So if you get a rhythm and you aren't sure, but you know you are really going badly quickly, call 911. I'd rather find out I'm in an svt I'm not tolerating well that's just making me feel bad, then wait till I'm too sick to call. This is when I wish I had one of those at home defibrillators, you could just stick it on there and see what's going on.......it's certainly not what they are for, but sure would come in handy sometimes! Erin, I have all those too. Aren't they fun? Mine are related to potassium, which in turn affect my ans....they should be paying attention to your long QT! And I hope they are, but there are not a whole lot of doctors trained in that syndrome. I am hyperadrenergic too and when my heart is pounding, it doesn't matter whether it's slow or fast, it is still the worst I feel, and it really jacks up my BP, as opposed to lowering it. People will say, well it's not that fast, but it's not the rate, it's the force of the pumping....morgan

Sorry Firewoman.... Vtach is when the heart beat originates in the lower part of your heart, the ventricles. Normally the beat originates in the upper right chamber( rt atria) zooms to a spot sort of between all the chambers, then down the ventricles, which is what causes the left ventricle to squeeze oxygenated blood into your system. Very rudimentary, but that's how it works. It's an electrical impulse in the heart and all the bumps and things on EKG's are showing whether the electrical wiring is working correctly. Most of us have irregular beats, in fact, I would say every one on the earth has irregular beats once in awhile. You can't expect your heart to beat a zillion times in your life and never make a mistake. Most of us have PAC's, or beats that originate in the right atrium, but they beat too early, before the heart has relaxed and filled with blood and is ready for another beat. Then, because that one beat too early, the next one has a little extra time to overfill and then more than usual gets pumped out. That is typically the beat people feel when they feel an irregular beat. Not the abnormal early one, but the overfull next one. These are very benign and very common. Abnormal beats that originate above the ventricles are called supraventricular. They tend to be very benign, although, sometimes they will take off and then you've got a heart going at 150-220 beats a minute. There are not many people that don't feel cruddy with that, as the heart doesn't have time to fill properly. This is called SVT or PSVT. This is different than sinus tachycardia. Much faster. Although there are doctors who call tachycardia svt. Irregular beats that start in the ventricles can be much more problematic. PVC's or premature ventricular contractions are also not that uncommon and having them does not neccessarily mean you are in trouble. The heart has no chance to fill with blood with these types of beats, however, it's just a backwards beat I guess. On an EKG, these are usually big ugly beats that are hard to miss. Having them here and there is not an issue. When you have a whole bunch in a row, though, you can get into trouble. These descriptions we were talking about are different types of PVC's. They originate from different parts of the ventricle, or you have "runs" of them. A whole bunch with no interruption. If they are coming from the same spot, the look alike, if not they can look very different, but all remain lg and odd looking. Non sustained means it stops itself. Sustained means it is not stopping and you will not stop without intervention...a code...in a hospital. You can't stay in vtach for a very extended amount of time without becoming very symptomatic. Because you aren't getting blood to your vital organs. There are certain diseases of the electrical system, one being WPW...which can actually be quite curable with ablation. Some can not be fixed this way. VFib, is when the heart pretty much stops trying at all to beat, which is usually after sustained Vtach. It stops being big and ugly and just becomes a squiggly line on the paper. Because my runs of vtach have stopped on their own, so far, the cardios have called them "benign" The problem with this thinking is, at some point, it may not stop on it's own and then I'm going to be in a very bad place, and no one can guarantee that won't happen. That is why I have problems with the term benign associated with RUNS of vtach, whether sustained or not. A PVC here or there is no problem to me and I never worry about those. I do not tolerate the runs, even though they have, so far, been relatively short. My PCP wants me to get an implantable defibrillator, but my cardio is balking at this. I'm not sure I want one, but I still balk at benign. I hope this clears things up a bit. It's very simplistic and hopefully you aren't going well der, I do know things, but there are many people that don't understand any of it and it can get very complicated. QTc is the space on an EKG between when the node in the atrium fires and the heart is rested and ready for another beat. When these are too long, you run a higher chance of sudden cardiac death. It is called long QT syndrome, or can happen with problems like I have, which is potassium related. morgan

I have been told my vtach is benign, which I must say, after 11 years of cardiac nursing, I had never heard before. Vtach and benign used in the same sentence. My arrythmias were felt to be autonomic in nature, but that has shifted to other thinking. I'm not sure what to tell you, a second opinion? What does it do to your QTc? Anymore I am typically more confused by the lingo than helped by it. morgan

I am sure my son is starting to show symptoms. Nothing worse than seeing your kids suffer....He's been sick since age 11 and is going to be 26 in a week and a half. The only recommendation I can give is therapy, for you and the child, to learn coping mechanisms, and positive reinforcemnet. Our first inclination is to protect them from everything, but that is not the best thing to do, trust me, I have learned this the hard way. Good luck and hopefully she will be one of those kids that gets better with age. My sister had NCS at the same age as your daughter, but hasn't had problems for 30 years, she is in her 50"s. Guess it does happen....morgan

I think it is very possible that this happens at times. For most people here, we do want to feel better, validated, and talk to people who understand. There are always going to be people who really don't want to feel better, have no intention of doing things that may help them and will use the people and a site to rationalize their unwillingness to work on making things better. Or do all their work for them. If you don't want to do something and you get lots of people supporting you in that, it is not neccessarily a good thing. No one here ever wants to hurt anyone's feelings or push them away, and we all have a tendency to be defensive and easily hurt, because of treatment we have received by the medical community, family members, so called friends, etc. Therefore, I think, sometimes we are enabling some people, who in fact, may need a bit of a push, always mixed with a great deal of support and validation. Out of the fear of hurting their feelings. My feelings have been hurt, but after licking my perceived wounds, I typically do see that people have had my best interests at heart. We can be supportive, but firm, without being hurtful and harsh. I do feel, at times however, we do make it easier for someone not to seek help. I google, look at archives, and exhaust as many ways I can before coming on with questions that may have been asked before. I remember being new and having many questions, but even at the beginning, I looked before I asked. I find at times, it is better for me to leave for a bit, because I find, at times, the site does feed a bit into my own negative feelings. By that I mean, if everyone is having a really bad time, I don't have the energy for myself, let alone a whole lot of others who feel as badly as I do. I become cranky and not very nice, and I really must follow my own advice, of getting myself better, then returning. A bit more refreshed and ready to go again. Although this can be perceived as "bailing" it is actually me helping me, so that hopefully, I can help others, or at least support them with a clearer head. I know I have made suggestions to people and been met with a great deal of anger, even if I've felt I have been supportive at the same time. However, I am guilty of the same thing. I don't believe anyone here ever wants to hurt anyone, but we are dealing with fragile and vulnerable folks. This does not excuse us from feeding into things that cause them to delay or seek treatments for fear of hurting feelings. We are also adults. My primary told me last week, the one thing I did that always made him realize that I wasn't crazy, was I drove him crazy, asking for tests, sending him articles, and never letting up on trying to find ways to feel better. I found this very interesting. I have been a royal pain in his hiney for a long time, but it has validated my situation to him. So for those that put off everything, don't follow through and are never willing to try anything new, whether because you are too depressed, just don't want to, are terrified of meds (that would be me) we apparently aren't doing ourselves any favors. And for those of us that continually condone this, we are not doing anyone any favors. This is controversial, but I am glad you brought it up Lois. I do feel it's important that when some of us do push, people hopefully understand it's out of concern, not to be mean and hurt you as others do. ramblinghardtounderstandmorgan

I'm pretty positive I don't have EDS, but I constantly have tendonitis everywhere, bursitis, and fracture little bones a lot. Ribs, ankle, wrist, head, vertebra, every single toe, except my big rt one, and it's over barely anything. I can't help, but i do feel your pain...morgan

I am going to a conference in Orlando the end of October. I have to fly, but hubby has assured me all the planes are big. I see everyday now a horror story about planes and I am terrified to fly. I am all the way across the U.S. However, I will get to meet the doctor from Germany who is doing DNA testing on my blood and best of all...I get to go see a dolphin! So, if I make it through the flight, I will finally meet people like me, and get to see a dolphin, can't beat that. Hopefully I can have my Beechnut baby food on board, as I hear they do not serve food on flights anymore.... morgan

Well, I really hate to say this, especially since I don't know what these are for, but since they are not off by a zillion, my guess is you will told not to worry about it, hence my never ending wondering about why tests have parameters to begin with. My best answer would be, I have no idea. My BUN and Creatinine have been above normal for months and no one has paid any attention, although it's a clear indication of renal problems. My mom had kidney failure. My pcp said he talked to a couple of nephrologists and both said they wouldn't know what to do with me if they did find something, so they have refused to see me. Some are big on parameters and some just don't seem to care much. It's a crap shoot. My son had to stop some meds for borderline high labs, but we also found out his doc had to have a liver transplant from a toxic drug so he , of course, would be more black and white I'm sure. I guess you need to find out from the docs if it's worrisome to them, and if you haven't heard from them and it's been a bit, they must not be too concerned. Sorry I can't be more of a help to you...morgan

I get a few of these symptoms with my PP, but not all of them, so I have no idea. How did you manage to get a pulse ox???? morgan

For me, I think it's the whiny noise of the vaccuum, all the movement, and just the exertion. I finally gave up and just ask the old man if he will do it periodically. I think my house could be condemned at this point....

Glad you got it sweetie, but it was way too long in coming with far too much stress for your little body. But now it's behind you, one less hurdle in this bumpy race we call life! Congrats sweet Melissa! Mama

Welcome aboard the dysautonomia train, a bumpy track to be sure, but I know you will find lots of support here.....morgan

How did things go Melissa? Thinking about you and the hearing today...goodmorgansunshine