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About bjt22

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  1. Hello noticed you said some studies show link between autonomic dysfunction and coronary artery spasms, where did you see this?  Look forward to hearing from you!



  2. I often dream of passing out. I do believe that many of these dream episodes are indicative of something going on in my body. For instance, I was having a massive passing out dream before I awoke several months ago to find that my hearing in my right ear was completely gone. Rather like what my daughter and I call the "pee dream"....when you dream that you just keep having to go to the bathroom but you can't get there, only to awake with an EXTREMELY full bladder. I think we do have dreams structured around what's really going on in our bodies... Much like the time when I was pregnant with
  3. Years ago, before I relapsed completely and I was just trying to stay off prescription drugs, I tried Kava Kava and had a similar reaction.
  4. Jeff, I'm glad you're with us, but I'm so very sorry about the circumstances. I wouldn't be surprised at all at your sister having dysautonomia. It runs in my family. I, too, am 100 percent sure that my late paternal grandmother had this. All of the typical symptoms, and even though it was years and years ago, she ended up with many similar treatments to what we use today. I think I got a double whammy as there are members of my mother's family as well who have or have had similar problems. I believe my father had mild symptoms all his life and still experiences them now but they are c
  5. Contributing factor, perhaps? Yes...my lungs fill up with fluid if I go a couple of days being upright too much. Evidently, my blood pressure and/or heart rates are too whacked out to clear them out without the help of diuretics. I have fluid in my lungs a good portion of the time, I just keep it down to minimal levels. I'm not a good cougher, either, as, well, we all know the symptoms long coughing jags can cause. I also have a mitral valve prolapse, but I don't think this contributes to my inability to keep fluid levels in check. So, are we more prone to pneumonia? I wouldn't be horrib
  6. I understand. Two of my doctors I really like. Both have HORRIBLE staffs that make me rather have teeth pulled than to deal with them. They have both messed up prescriptions horribly...in fact, when I need to call for a refill, I pretty much leave myself a couple of weeks in order to correct the messes that are made. I also share the "not being taken seriously enough". I've had what I call the "it ***** to be you" appointment where I'm told that basically, it's not worth trying much else. I can intellectually understand this, but it's undermined when I hear from other patients seeing th
  7. I've used Catapres/clonidine for many years. One of the most helpful drugs that I've taken. For people with autonomic neuropathy as at least a partial cause of their POTS, it seems to actually promote some vaso-constriction. In effect, I can say that it helped even out my blood pressure. Not nearly so many extremely high spikes. I do need to take a beta blocker as well to keep my heart rate down and my blood pressure a little more evened out. This all makes me tend to run very low...but while I'm still very orthostatic, I feel better being orthostatic with a lower blood pressure than I d
  8. Hmmm....could you explain the number mapping? I'm a mapper, period. It's like a have a great big grid work in my brain. I see everything, all the time, in relation to everything else. I'm fascinated by all kinds of maps...I can look for hours at a map, just seeing and absorbing where everything is in relationship to everything else.
  9. Gosh...I could have written almost the exact words myself. Over the years, I've come to accept that part of my mother's attitude comes from denial. She just does not want to wrap her mind around how sick I've actually been. I must admit to somewhat being responsible...I've often downplayed it. She lives about 2 hours away from us, so it's not as if she's ever seen what my day-to-day life is actually like. She's never really been sick, either. She's had some trouble with her back, but it's not disabling in the way we are disabled...I mean, if the limit to my disability was not being able
  10. A few years ago, I had a stress test with the thallium and I had a very high ejection fraction...around 75 percent, I recall. For a variety of reasons, I was considered to have "failed" that stress test. No one mentioned than abnormally high ejection fraction, but I believe it can be a sign of early diastolic dysfunction. Just back in the spring, I had an echocardiogram. MY EF on that one came back at 49 percent, I recall. Again, no one particularly mentioned this fact, but it's something that I plan on bringing up at my appointment next month. For the record, I have the clinical signs o
  11. I don't even have to "catch" the virus. I can just be exposed and have several days of really increased symptoms.
  12. I hear you. Boredom is a major problem. On good days, I can feel almost normal if I'm laying in bed doing nothing. It's that getting-up-thing that causes the trouble. So, what does one do? I'm blessed to have always been a very avid reader. Granted, after all of this set in, I practically had to teach myself to read again, and I do it very differently now than I did previously. I also enjoy crossword puzzles, and can I just say Thank God for DVR/Tivo? I can record shows I like and watch them at my own pace. I also enjoy the computer (surprise, surprise) and one of my main outlets on-li
  13. Congratulations! A ten pound baby? Yeah. I'm a huge natural childbirth proponent, but if any of mine had gotten to that size, I might have been willing to wield the scalpel myself!
  14. If I'm not in active pain or too nauseous, sex is pretty good. As someone else said upthread, it's not as if I'm still trying to prove that I can do it like a 20 year old. Frankly, my husband wouldn't be up for such performances, either, so it's all right. Interestingly, because of of the various blood pooling, I think I'm even more orgasmic than I was when I was younger. Now, as someone else said, I'm not getting up afterwards and doing much....but come on, who really needs to get up and run around after the act, anyway??? I often can tell the next day....I'll be more symptomatic, but yo
  15. This is very normal for me. I have a difficult time with any strong fume that might leach one little iota of oxygen out of the air I'm breathing. Strong cleaners, perfumes, gasoline, heck, sometimes just something cooking in the stove and putting off a little smoke can do it to me.
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