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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 twins and dreamed there were frogs in my bed....
  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 considered part of Parkinsons...none of the doctors seem to care that he had many of these symptoms his entire life before the Parkinsons. Two of my children have been diagnosed with NCS. Their cases are mild, thankfully. All of my children have had some symptoms of greater autonomic instability, including migraine and IBS. So, while there aren't necessarily a lot of detailed studies that would say definitively that this is somewhat hereditary, anecdotal evidence does seem to make a strong case in and of itself. One aspect of your sister's sad demise that I think we should shine the light brightly on is the taking of what most consider somewhat conventional medications for pain as well as those commonly used to treat symptoms of colds and flu. Most of us have had some pretty negative experiences with some drugs, yet we don't seem to hear people who might likely have strong autonomic irregularities being advised against them.
  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 horribly surprised. Can we develop it more quickly than others? Possibly. Is it more difficult for us to clear our lungs of fluid? For me, that certainly is the case. Did dysautonomia contribute to Ms. Murphy's death? Depends what you mean by "contribute" or "cause", I suppose. "Normal" people do die of pneumonia...Jim Henson died of a very quickly developing case years and years ago. It's often a serious illness in and of itself. And remember...every year, they talk about how people with chronic health conditions should consider vaccination against flu and/or pneumonia. They don't say that for no reason, nor do they single out any certain "chronic conditions". Personally, my belief is that we don't really know what happens to people like us over time. No one has ever studied it. How many people with autonomic dysfunction die and get a death certificate listing some other cause? I mean, in the end, everyone dies of either respiratory failure or cardiac arrest. I just watch for my risk factors and treat accordingly. My primary care doctor happens to agree with this approach, so therefore, he considers my dysautonomia a "risk factor" for several other conditions. It doesn't hurt to look at it this way. I don't know if having this causes some of these other risk factors or not. I don't know if this condition plus other risk factors equals a greater risk. Just pay attention...much like a diabetic would pay attention to the developing of sores on the feet or symptoms that could indicate kidney failure. These are things that need treating whether they are caused by the dysautonomia or not. So, I take my cholesterol drugs, take drugs to keep my blood pressure from spiking and heart rate from sky rocketing, take drugs to keep the fluid from building up at the rate of 15 lbs a day. I'm also aware that as a migraine/cluster headache sufferer that there is an increased risk of stroke, so I try to keep myself from falling into that cycle as well. I don't think we're ever going to get POTS or most other autonomic dysfunctions to be considered as conditions that are fatal. Even Parkinson's and MS aren't considered as such.
  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 this doctor who report having every stop pulled out. Why them and not me? It's difficult not to take this as some form of judgment on the worthiness of my recovery. The NP was surprisingly better last year than the doctor...at least she picked up on a condition that I've been relating for several years now and ordered the appropriate tests...however, after having them done, I never heard back from any of them and had to read the results in my records at my primary care doctor's office. So, by and large, I treat myself these days. My primary doctor helps. When I see the cardiologist or NP this year for my annual appointment, however, my husband is going with me and is going to help me try to get further. If we don't, he's insisting that I see someone else even though this doctor is considered the "best of the best". Not the "best" if one is not receiving any actual help, I suppose. It is disheartening as I'm almost afraid to try another doctor at this point...if the "best" is so seemingly unwilling to go out on a limb for one, what can one expect elsewhere?
  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 did with a spiking blood pressure and sky high heart rate. Recently, a rival, once a week generic Clonidine patch became available. I switched over to it from the Catapres to save $40 a month. I think I'm going to go back as there's something about the generic patches that keeps them from adhering as well. I used Catapres for nearly 10 years, and during that time, I think I only lost one or two patches and only had to use the adhesive "over lays" a few more times. After a couple of days, I'm struggling to keep the **** clonidine patches on. This week, for whatever reason, I've had more luck...I'm at day five and it's still stuck on without an over lay. Not been the case for the previous 2-3 months, however. I wonder if the adhesive isn't causing a good connection with the skin if the patch is able to deliver the medicine as well?
  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 to shovel snow or trim the shrubbery, well, I wouldn't be complaining so much. It's also hurtful because she, too, will run to the assistance of other family members that are sick...I have a cousin who has what is diagnosed as "sick sinus syndrome" but I'm convinced she has POTS. My mother has gone to be with during countless appointments. And she lives 75 miles away! Just recently, she took my aunt, her sister, to a city 50 miles away for an MRI...her words were "everyone deserves to have their family with them during these times"...hello...I had an MRI done back in the summer for the EXACT same reason as my aunt, and my mother hardly even bothered to call and ask about it. I think in my case there's several factors at work. One is the denial aspect....my mother just doesn't want to deal with the unpleasant fact that I'm sick and live a very limited life. I could be catty and say that this might, in part, be because she didn't really want to offer any real help back when my kids were small and I could have used it. Another factor is my mom's relationship with her family...my brothers and I always knew that we kinda came in second after my mom's sisters. She's such an intense relationship with all of them that we're kinda after thoughts a lot of the time. And, finally, I think she, like many, many people have little understanding of how bad any kind of serious cardiovascular problem can make one feel. There is a broad lack of understanding out there concerning this. Most people really don't get it that having a "heart" problem makes you sick even if you aren't having a heart attack at that moment. The kind of fatigue that accompanies this is just very difficult to explain...I've tried several times to liken it to times she's called and told me about a flu virus that she's had and how bad she felt for a week or so....she'd say things like " I barely felt like walking to the kitchen to open a can of soup"....yeah, Mom...that's how I feel every day. All day. I'd tell her that, but I think the "denial" thing would just kick in. In the past year, it's been worse again, if that's possible. My father had to go into a nursing home, and my mother uses it as an excuse to visit us at all. She still visits her sisters and nieces, but not us. Go figure. Oh, and my best story for "unreasonable"? When I was first diagnosed years and years ago, and I was literally almost completely bedridden, my mother was calling to complain that I wasn't bringing the new baby to visit her. I tried to explain that I couldn't really leave the house, much less drive, and her response was, "oh well, if you have to be stuck in the house maybe you can work on getting some things done. You could get some painting done".
  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 of congestive heart failure...I constantly fight to keep fluid off my lungs.
  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-line are several political blogs. Always loved politics, and in my political circle, there's many people who find themselves in similar physical circumstances. I've made several great on-line friends through this. Someone mentioned repetitive games....I play one rather like bejeweled...it's "biotronic". Mindless, yet it satisfies something in my brain. I also have a hand held yahtzee game that is my constant companion.
  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 you know what? Too bad. I've given up too much already. I have to have some sense of normalacy in my life. My husband used to fear that he would literally kill me, but after all of these years, I haven't died from it. We're well enough in tune with each other that he knows without my saying whether I need it to be a slower, more easy event or whether we might be a bit more active. There have been occasions when we've had to stop mid-act, and I always feel horribly guilty, but my husband is very understanding. There was the one infamous occasion when I did actually pass out for what was probably a minute, but we just laugh that one off...husband keeps insisting that he probably bored me into passing out, while I keep assuring him that it was probably quite the opposite! I have found that having a glass of wine before hand helps keep me more comfortable, and yes, increases the level of desire. Keeps me from getting the angina pains and and probably helps me to not mind some of the other symptoms so much.
  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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