bjt22

Sometimes there is some pitting around my legs and ankles, sometimes not. Abdominally, it doesn't pit, its just there. As long as I could get rid of it overnight, it wasn't a problem. It became a problem when I wasn't getting rid of it sufficiently over night. My blood pressure is really low, too, and this was a concern. However, the diuretic really hasn't lowered it any further. I supposed the fluid is not staying in my vascular system...and if we can't keep it where we need it, what good is it doing? My chest does hurt a lot, and there is a specific kind of hurt when I'm getting "fluidy". I congest up everywhere...and I don't know how else to explain it, but I just hurt and ache. My digestion was really worsened, too. It just felt like everything was water logged. I was very nervous about the diuretic as it sounds so counter-intuitive for us. My family doctor prescribed it for me and told me to start very, very low and work up to a dosage that I could tolerate and was helpful. Slowly, I moved up. I also found that if I'm upright at all, I might as well not bother taking it. So, I take it, lay down for a couple of hours, and it seems to work. It doesn't get rid of the problem, but it is a tool that helps me keep on top of it just a little.

I'm generally all right with flying...only because I've come to understand what will happen. Now I know just to expect certain things. During the flight, I'm just kind of out there...no joke, after several flights, one time I looked around and realized that other people on the plane were actually sitting completely upright and able to lift their heads off the back of their seats and I thought "Hey....other people actually lift up their heads during a flight!". So, I just kinda sit there with my head slumped and do nothing. Honestly, what is there to do, anyway? This part isn't unpleasant, particularly. Often I do experience nasty symptoms on descent. Often this is extreme pain in my head and/or my chest. If we're lucky, we descend and land fairly quickly. If we're not so lucky, we're stuck up at about 10,000 ft circling around forever waiting our turn to land. That's very, very bad. Anyway, I know to expect this, and if its a good flight, the absolute misery rarely lasts more than about 10 minutes.

I've never been an overly emotional person, and now I'm even less so. Often, I find myself having to think about what some stronger emotions feel like so I can generate the appropriate response. I'm not on any anti-depressants, but my emotions feel dulled down, apparently like many of my neuro-receptors. Someone remarked in a post above about feeling agitated when upright. Years ago, right before my symptoms really started to intensify, I'd noticed that I'd stand in line in a grocery store and start getting really impatient. Very unlike me as I tend to be fairly even keeled...took me awhile to realize that it was by whole body saying "I can't stand here like this for very long!" And yes, when I'm not feeling well, I tend to get shorter tempered. Who doesn't?

There's still much I can't do. I wouldn't be able to work, I can do a little very light housework, and can only tolerate any activity which requires me to be on my feet for short periods of time if I'm able to take sitting breaks every few minutes. So, how am I helped by medication? I don't feel so awful if I sit around and do nothing. There's much to be said for that.

I have big-time edema. So much that I'm on a fairly large dose of a loop diuretic. This became a problem a few years back...I had always had a lot of swelling if I was upright any length of time, but it would generally resolve on its own over night or if I stayed down for a couple of days. Well, over time, it seems that this became not "self resolving". I knew that I was piling on fluid...and within a very short time of starting the diuretic, I lost 25 lbs. I had been carrying around 25 lbs of excess fluid. This fluid was not helping me. In fact, it made me feel worse. By the time I started on the diuretic, I was in a state very similar to congestive heart failure. I was collecting fluid on my lungs overnight. I'd wake up gasping for breath several times a night. And every part of me hurt! The final straw was this excess fluid setting me into a cluster headache cycle. That was something I could not, would not, endure. I was afraid to use the diuretic, and I started off very small. Over time, I came to understand that this excess fluid wasn't doing me any good because I couldn't keep it where it needed to be in order to do me any good, if that makes sense. Needless to say, I do better without it. Even with the diuretic, however, its a constant battle. During times in which I'm upright more, such as holidays, its not unusual for me to pack on 10 or 12 lbs of fluid in the space of one day. The diuretic, however, gives me a tool to combat this with.

I'm very interested in hearing about your experiences with this drug. Its one of the only possibilities left for me. My diagnosis is "severe autonomic neuropathy". In practical terms, my blood pressure crashes everytime I'm upright. My symptoms seem very like yours...I have a difficult time performing basic daily tasks without becoming sick in one way or the other. Extreme pooling seems to be a huge part of my problem, and octerotide should off-set some of this. My only concern is getting my insurance to cover this treatment.