bjt22

I do this. We've finally determined that the most severe episodes are likely due to either vasospasms or small vessel angina. I would go have a good cardiac workup done. Have a nuclear stress test. Talk to your doctor about any specific heart attack risk factors you might have. I've done this for years, so I don't obviously run to emergency rooms every time it happens. If it's a milder episode (which they now tend to be since I've been on various meds), I take a couple of aspirin (usually Excedrin) and have a glass or two of wine. This does seem to help about as much as anything. If it's a particularly bad episode, as in the pain being equal to that of childbirth, well, I just do whatever it takes to get through it. This probably isn't particularly helpful to you, but I've done this for years and obviously they haven't all been heart attacks. I wouldn't be here responding to you if they had been.

Honestly, fifteen year olds can find something to complain about when they have parents who are completely well. I'm not sure anyone can do enough or be enough for kids that age! It's a very narcissistic time in life. Our problems basically revolved around me not being well enough to really argue with them. Ofcourse, they knew this. Kids are really quite clever and know how to zone right in on your weak points. That all said, they do get better...and mine did really understand where I was coming from most of the time. I remember one incident in which I was really hurt because I had gone out for a rare social evening with a few friends and ofcourse, when I returned home, I needed to go straight to bed. I made some remark about how it would be nice if everyone would pitch in a take care of what needed taking care of so I could do so and my daughter told me "well, maybe you just shouldn't go out if you're not able to do anything else!". That hurt for awhile. I also used to be very reluctant to ask my kids to do their fair share of work around the house. My mother finally pointed out that whether I was sick or not, the kids should be doing these things....I just felt guilty because somewhere in my mind I suppose I felt bad about NEEDING them to do these things. This stuff is hard. Kids do adjust, and we don't do them any favors by pretending to them that they might not have to make sacrifices in their lives, too, or at least learn to manage things in different ways. Again, this is something I think all of them go through at this age as they realize that parents are just human beings, too. They still want to think that we will forever be around to make all their wishes come true. Alas, that's rarely the case. My husband? It helped him tremendously to meet other people like me. As soon as he got over the notion that I was likely to drop dead all the time, he adjusted. We had a few fall outs as he thought I needed him to tell me what I should do or not do, but we got past that, too.

I can see it. When my arms or legs hang downward, I can literally watch them turn blotchy and purple/bluish. They also swell. I can hold my arm down for just a few seconds and it will be a completely different color than the arm that is not down. I can tell I'm pooling into the abdomen by swelling alone. Along with the pooling, I have just plain old edema. No one is really sure why...lot's of possible answers. If I have a day in which I'm up and about more than usual, I can hold onto 10-12 lbs of fluid weight. Doesn't help me as it obviously isn't staying where it could do me any good.

This has pretty much been my life for the last decade. I would say 15 years, but I had a couple years in which I was significantly more functional in the interim. Everything depends upon how I'm doing on any given day. I remember a time back about 10 years ago, when I had first relapsed back into more severe symptoms in which I accompanied by then teenaged oldest kids to the mall for clothing purchases. Can I just say how frightening it was to have to turn my credit card over to my then 15 year old daughter to pay for the purchases? I don't drive, so I obviously am not going out by myself. I've adjusted to this, and it's not that difficult because I do have kids that drive as well as my husband. They're used to the way I am now, so they don't think it's odd if I get into a store and two minutes later have to leave. Needless to say, I don't "plan" on anything large scale. We really do get better at living day to day, and yes, even minute to minute. Right now, I can't tell you what I'll feel like being able to do tonight. If I know I have to do something, well, I don't do anything beforehand, really. It's easier now that my kids are older. My youngest will start high school this fall, and just waking up with her and her older brother before they go to school means that I really do nothing else for the entire morning. I go back to bed. And the conversations? I guess I've gotten really good at avoiding people. Sounds awful, doesn't it? There's times I look out my window before I go outside lest a neighbor be out who might want to stand there and chat for a minute. Otherwise, I'm very good at steering, directionally, myself and a couple of others towards a place where I might sit. Funny as it seems, after awhile one can get so good at doing this that no one notices! My husband often laughs at what he calls my "holding court", because when we're at some sort of function, I'll find a place to sit and let others come to me. You know, the people that you really are interested in talking to will do that....and these days, if they aren't willing to come to me, then, well, I guess I can do without talking to them!

I've taken statin drugs for years. I started out on Zocor, but it did little to lower my cholesterol, even at fairly large doses. I've been on Vytorin for a couple of years now, and it does seem to do the trick. I've noticed NO side effects from either of these drugs. I was kinda "iffy" about these drugs, too....however, my doctor pointed out that they work not only by lowering cholesterol, but they seem to help plaques stabilize...nightmare scenario would be a plaque breaking loose during one of my constant vascular spasms and forming a clot. That made me listen and take it more seriously.

Well, it will be interesting to read when there's some substantive that's out there. This does fit my daughter, on surface level. Irritable bowel, GERD and fatigue. Two of my kids are already diagnosed as NCS and two others have migraine with aura. Seeing a pattern?

Yeah...I pool everywhere. Between being up and about for close to an hour preparing dinner and then having the nerve to actually EAT IT, well...I needed to lay down for a couple of hours. My pooling is so noticeable that I can see it when moving positions. I also now hold on to the fluid which necessitates my taking a diuretic to get rid of the fluid left over from the pooling. That said, it's still quite common to have different numbers from day to day...and to not being able to co-relate how we feel to those numbers. It's all about that minute-to-minute, second-to-second ability of the blood to flow in a somewhat workable manner. When we take a blood pressure or measure a heart rate, its like a split second snap shot...it certainly isn't telling the whole story.

Does anyone have any links or suggestions as to where I might get more information? This sounds a lot like my daughter.

I think you answered your own question. Mine's done that at times. Ofcourse, trying to make rhyme or reason out of it is enough to lead us to insanity. I suppose we can say that every day is truly different, that there are different factors influencing every bodily function from day to day and therefore expecting too much consistency is not even realistic for "normal" people, much less those of us who are anything but "normal" in our responses? I'm feeling rather funky, too...but I spent a hour downstairs cooking dinner. I think I'd rather just not eat!

I understand perfectly. It's a catch 22...it we go around saying "I can't do this or that" then we're written off as chronic complainers. However, when we don't, well, it feels like we get little or no consideration. Overall, my family is great. I don't know what I would have done without my husband. I'm sure when I'm not saying anything about how I feel, though, they are all hoping against hope that I'm really "better", whatever that means. I guess I can't say that I blame them. Over the last decade and more, I've lived in ways that I never thought I would. I've raised my kids, especially the younger ones, far, far differently than I ever imagined. I've had to rely on all of them, which I absolutely hate doing. I hate relying on anyone. Ofcourse, when I say this, my family thinks I'm just being ******, and frankly, I can understand why they get their feelings hurt by it. And crazy as it is, often I'm my own worse enemy....I'm really good at talking myself into the idea that I can do things beyond just existing. Like you, if I get dressed and putter around for just a bit, well, I'm done. Heck, I haven't cooked a meal in a week, and my husband and son did the grocery shopping this week. I went with my husband a couple of weeks ago, but that's the first I've gone in a couple of months. Even knowing this, I constantly fall into the trap of thinking "oh, I'll do this, that, and the other thing tomorrow"....ofcourse, I can't, so I'm frustrated all over again. Trapped? Sometimes I'm terrified. I'm terrified of something happening to my husband. So terrified that we're currently risking a lot to buy investment property so I'd have some income should he die before me. Yeah, I'm only a few years away from being able to collect his Social Security should he die, but I'll need more than that. We're doing term life insurance policies to insure that our investments would be paid for should the worse happen and we carry some policies that could just be used for me to live on. This still doesn't answer how I'd actually take care of myself day to day. I suppose I just can't quite let my mind go there. Oh, and my story today? My daughter was working really hard to clean up the basement and she wanted her siblings to help. She wanted me to yell at them. You know what? I can't yell. It literally makes me ill. This is my life.

I think what you describe is fairly common amongst us. I've often stated that I'm great under stress. We get those catecholimines pumping and there's some semblance of circulation. However, we can't always live in a state of constant motion. No one can live like that and we deserve time to relax as much, and probably more, than other people. Ofcourse, the more we do, it's often the case that we'll feel worse during our attempts to relax. All about that elusive "balance", isn't it? And finding this is a very individual and personal thing. If I choose to do something one day and I'm totally crashed out the next, well, that was my choice and I live with it. I wouldn't advocate that anyone else make the same choice...maybe I did what I did because it meant something to me, or honestly, because I had no choice. Maybe at this point in my life, I can afford a few days in bed without doing anything. Others obviously can't schedule such down time. That's what makes this so difficult to deal with, and why we are always on the verge of catching flak from those who don't deal with chronic debilitating illness.

Well, I've been this way for a long time, so I tend to be rather dismissive these days. I gotta tell you, though, that in the back of my mind, I believe that someday I will probably die of either a heart attack or stroke because the symptoms are so like those that I experience everyday. This isn't really a stretch as both heart disease and stroke are leading causes of death...it's just that in my case, I doubt if I will be the lucky one who makes it to the hospital on time to get necessary treatment.

I don't think it's actually helped me with the pooling or with being orthostatic...but, I think it's made some of the symptoms I get while upright more tolerable, if that makes sense. And for the record...it's speeding up of my digestive tract is reason enough for me to stay on it. I know it makes some people have gastro problems because of this, but for me it is a definite benefit.

I get ptosis (sp?) when I have cluster headaches. It goes along with that whole syndrome of symptoms. Otherwise, no eye lid lad. I've actually thought about MG since the response I've had from mestinon. I don't think that's my problem, though, as I can often relate escalating weakness to being upright. It's there when I'm not, but the longer I am, the worse it gets.

Yes! That is, for me, too much sleep at one stretch. I'm rather cat-like....I do better with shorter sleeps over a 24 hour period. So, ideally, I would sleep about 5 hours at night, maybe another two or so by late morning, and hour in the afternoon, and an hour in the evening. I even can feel less tired this way.

the muscle fatigue/weakness is amongst my worst symptoms. When I read a book, I have to do so lying down with pillows to prop up my book for me as I don't have the strength to hold it on my own. And yup...hair combing is a big deal, too. I don't have pain, the tremors/shakiness go along with this for me. I will say that Mestinon has helped a little with these symptoms. I can at least carry my own purse now when I get out of the house.

I feel better at nights, but not when I'm sleepy, necessarily...in fact, being overly tired or just sleepy makes me feel worse. I'm less likely to be tired at night than I am during the day. Mornings are my worst time...if I have to get up and get myself somewhere, it can literally take me until noon. I generally feel a little better in the afternoon, then hit a rough patch in the evenings. By about 9:00 or a little after, I'm heading into my best times.

I've been on a beta blocker for many years now. I take a largish dose twice a day. Started out lower, and there were some side effects, but they went away after a month or so. That's why I encourage people to sometimes hang in there with them for awhile!

You know, I could say that our health care system is in the mess it's in because we allowed too much "management" by providers, hospitals, insurance companies, pharmaceutical companies, etc. Could we, the lowly patients, make a bigger mess out of things than they have collectively? Medicine is very complicated these days. We aren't going to go back to the times when we could have a family doctor who could be expected to know enough to reasonably diagnose and treat whatever he/she might encounter. Those of us who are reasonable understand this...and heck, we're willing to help with our own care in order to make the system work more efficiently! If we want any kind of healthcare system going into the future, this will have to be recognized.

I will never understand. Why, oh why, is trying to "manage one's own care" considered a bad thing? I'm sitting here with the television on tuned into MSNBC. A lot of talk of "health care reform"...across the political spectrum, it's recognized that we NEED people to take responsibility for their own health and health care. We are SUPPOSED to be partners with our doctors. If politicians can recognize this, why, oh why, can't a good portion of our providers get this? Personally, I've been very, very lucky. I never had my doctors question whether or not there was something medically wrong with me. Years ago, however, when I was having my babies, I had a couple OB offices tell me that I was "crazy" if I believed that any doctor would allow me to deliver in a way that I wanted to....nothing really out of the ordinary, I just wanted natural child birth without interventions. Guess I wasn't too crazy after all as I found several doctors and nurse midwives who were more than happy to accommodate me. And Maxine, I certainly agree that those with psychological/psychiatric disorders need help, too. In fact, I think that pinning psych diagnoses on patients who don't have them minimize the very seriousness of these disorders and what those who have them are suffering. If I had a serious mental disorder, I'd be ****** insulted by doctors pinning the same diagnosis on someone who didn't even fit the criteria. It would seem to me as if they didn't fully understand the seriousness of the problems I was having. And sorry...I don't know if one can be "depressed" without, well, being DEPRESSED. Never made sense to me.

Well, was the pregnancy test positive? That would REALLY be news.... Not medically related, but several years ago, my daughter became classified as "male" somewhere down the line. We received notice after notice reminding her to register for the draft.

Over the years, I was pretty much told the same. For a long time, I disregarded it. However, it finally was brought home to me that my needing a beta blocker wasn't just about me feeling better, it was indeed about my staying alive. My heart rate was out of control, my blood pressure often spiked and often stayed high for hours on end, and I had probable coronary artery spasms. That said, the beta blocker did make me feel better, too. Even helped with migraine/cluster headache frequency and intensity.

I think it might depend upon the level of the tachycardia. For a long, long time, my resting heart rate was running 120-130 bpm. This was when I was just sitting around doing absolutely nothing. It was my then "normal". Not too many doctors were wild about this and speculated that it could have the same effect as long standing hypertension.

feel sort of late to this game and missing half the discussion, but a beta blocker works for me because in addition to the tachycardia, I tend to have blood pressures that can either be sky high or bottom of the charts low. No much in between. Beta blockers do help keep this a little more in check. I still remain very low most of the time, but a low that hasn't just dropped from a sky high feels much better. I also feel better not having my beating at 160-180 bpm everytime I stand up, and I'm sure not having a resting heart rate of 120 bpm is better for me in the long run, too. That said, I could not tolerate atenolol. The drug from **** for me. I also need other drugs in addition to the beta blocker, and while these drugs make me feel better, they don't make me "well". At this point, though, if something can make me feel just five or ten percent better, that's ok by me. I'm so past looking for a magic bullet cure.

One benefit I did find from having an exercise stress test was that it clearly demonstrated why I was having such a hard time...I lost a measurable blood pressure within the first 30 seconds of being on the treadmill. I never regained it during the four and a half minutes I lasted on the thing. Now, this was no surprise to me, but it points out to any health care provider that might question exactly why I am so debilitated. And yes, there are those that are shocked that a person can still be conscious without a measurable blood pressure...including the nurses and technicians who conducted my stress test. Yeah, I know we've all had tilt table tests that most of us have failed, but the tilt table test is not a well known and certainly not as well understood as the plain old stress test. I've found it much easier to reference my performance (or lack thereof) on the stress test than on the tilt table test. Often, when I bring up the TTT, I'm met with confused if not outright blank stares.