bjt22

I had my last child when the POTS/autonomic dysfunction was just at the point of giving me the worst it could give. I was unlucky enough to catch some kind of influenza virus in my eighth month, and I believe that was my final straw. Before that, as my pregnancy progressed, I noticed that my blood pressure was more labile and my heart rates were all over the charts. The biggest challenge I had at that point was fighting with midwives who wanted to label me as pre-eclamptic. Not really the case...it just didn't fit. Having a home health nurse come to my house four times a week muted down that fear. My baby was fine...born exactly on her due date. I probably was working up to severe problems in the previous pregnancy. That went fine, too...just watch for labile blood pressures and heart rates that might be confused with toxemia. Must say, though, that after the pregnancies was no picnic. After the last pregnancy, I started passing out after a couple days. It progressed to the point that I couldn't sit up at about six weeks post partum.

Well, I have always been anemic. Not the root of my problems, but no doubt a part and parcel sort of thing. I have to admit that I do better on a diet high in protein and lower in carbs. I'm borderline diabetic, and I've dealt with hypoglycemia for years, no doubt in at least part due to insulin resistance as well as autonomic dysfunction. While I wouldn't say that such a diet can cure one, it does definitely make me feel better.

What do you mean by "jitteriness"? It does help with the constant tremors and lack of muscle strength for me. For example, I can now hold a baby and not fear dropping him/her. I don't think it has an effect on my blood pressure. I still get the ups and downs and still drop upon being upright. However, the drops don't feel as bad. Another benefit is the effect on my digestive tract. Does seem to help things move along a bit.

I have to take a hefty dose of Lasix daily or I, too, tend to build up fluid. Before starting on it several years ago, I was carrying around nearly 20 lbs in fluid. And yes, it was backing up in my lungs. Even with the lasix, I still fight this problem...if I'm upright more than usual for a couple of days, the fluid will start building again. So, when this happens, I try to schedule a couple of days in which I can be not-so-upright. I've also found that I get the biggest bang for my buck when I take the lasix and then lay down for a couple of hours to let it work. I drink ALL the time. I view the lasix as just an aid to help me with the "overflow", if you will. Does being on a diuretic make other problems worse? I don't know. I do know that carrying around too much fluid and having my lungs getting congested causes all of my symptoms to be worse.

I think there's a lot of controversy because pacemakers don't totally "cure", "control" or even negate the need of most for further medical treatment. I suppose it depends on how one looks at things. From the perspective of patient, I can say that I would be willing to try it if it just made me feel a little better. That said, my doctor is not interested in doing one for me. According to him, since I have few daytime episodes of bradycardia, it's unwarranted. Well, it's true that I might experience little daytime textbook bradycardia. However, since my body reacts very poorly to my heart rate going below about 65 bpm, I consider anything less than that bradycardic for me personally. I also experience extremely low heart rates during my sleep. The latest impact of this was my losing the hearing in my right ear. It was a total loss for a couple of months, and I now seem to be recovering at least some of it...however, I really don't want to hear (no pun intended) about these incidences not being problematic. Obviously they are...

Theoretically, Ritalin would help some people because it is a vaso-constrictor. It is very much like caffeine in many of it's properties, so if you are one who doesn't tolerate caffeine well, you probably wouldn't do well with Ritalin, either.

I recently had an MRI due to the sudden, almost 100 percent loss, of hearing on my right side. What did I learn? I learned I want that radiologist's job. A whole report of "This might or might not be normals" and "unclear what this means". Yeah, I'd like to earn a six figure income for writing up such reports. I had several of those lesions found, too. One quite large. They are found on about 10-19 percent of people who've reported migraine. This goes far with the theories that migraine is often "stroke like", and the thought is that the ischemic, stroke like damage comes from the "aura" felt before the actual headache...it's possibly a consequence of the strong vaso-constriction that causes the aura preceding the massive vaso-dialation that causes the headache. I often get the "auras" without the actual headache, so it makes sense. Since one was quite large, I wouldn't rule out a stroke in the past.

Definite coordination problems. Problems with both gross and fine motor skills. Noticed this a lot with my own kids, too. Only thing that finally clicked for me was just a month or so ago, I was watching my son open a can of soda. He appeared to be having difficulty...the kind of difficulty that I often have doing such things requiring fine motor skills. When I watched closely, I saw that his long skinny fingers, so much like mine, were so hypermobile that they were bending backwards everytime he applied pressure to the tab, therefore he couldn't get good leverage. It was a "light bulb" moment...he's in 10th grade now, but he's had serious problems with writing his entire life. I now have a better understanding of his plight as well as my own. Ofcourse, I'm the person who grew up believing that everyone had "spells" on a regular basis. I had "gray outs" my entire life. Can't ever remember not having them. Always had them at least a few times a week, and often a few times a day. Again, thought everyone did this. I've always been quite heat intolerant, and I now understand this. Never could lay out and tan with the other girls. My parents realized this about me, too...and from the time I was a small child, I had a window air conditioning unit in my bedroom. I also had what most considered my bizarre showering ritual in the morning. I had to be at school by 8:15, so I would get up in the morning at around 5:00, take my shower, and lay down on the bathroom floor for about an hour or more before getting up and completing my preparations for the day. I would even bring my pillow and a blanket into the bathroom with me so I could do this. Now I know why, but then...everyone just thought this was a weird quirk that I had.

Well, according to many sources, most of us living in our neck of the woods are vitamin D deficient...yet few of us have disabling autonomic neuropathy. About a year and a half ago, I was found to have a "profound deficiency"....the number I think my report said was "less than 5" whatevers it is they measure by. I did the huge 50,000 units once a week for a couple of months. I felt no different. Now, this isn't to say that a profound deficiency can't make the symptoms of the neuropathy worse...I think that's quite possible. But is it the cause? I doubt it.

When my husband has episodes of a-fib he describes it that way. Not saying that's what's happening to you, rather that it is an associated cardiovascular symptom. I don't get the cold, icy feel, rather a numbness around my heart. Maybe it's the same thing but we all describe it differently?

I've had this happen. Not totally sure what it is, although sometimes it seems to be when fluid distribution is weird in my body.

I use labetalol, and it has been very, very helpful for me. I could not tolerate atenolol at all, and was therefore very reluctant to try another beta blocker. My experience was very, very different, though. I did feel a few side effects for awhile. Felt a little groggy and drugged feeling for a few weeks, but it did wear off. Along with catapres, this keeps my heart rate in check rather well. Instead of it jumping to 160+ bpm everytime I stand, it usually doesn't go over 110-120 bpm now. That's quite an improvement, let me tell you. Because my blood pressure is not jumping around as much, I have far fewer incidents of variant/prinzmetal angina as well. Even migraines are improved. Now, this doesn't mean I'm not orthostatic. I'm still very much so. And my blood pressure still drops, but it feels better than it did when it was dropping from higher bp's and hr's.

Oh, gosh....do I ever understand. This is a dilemma I face over and over. What does it really mean to "not be able" to do something? I think I've had some sort of autonomic dysfunction my entire life. It was certainly mild, but it was there enough that I knew I really couldn't quite keep up with everyone else. Since I was a very thin, pale, frail looking blonde, I always fought against the "weak" or "not strong enough" or "fragile" sort of labels. Therefore, I pushed to not only keep up, but to try to outdo everyone else. It became just a way of life for me. Now, many times, I don't know what "can't" means in a very literal sense. I do things often that **** near kill me, but I cannot just admit that no, I really can't do this. Fortunately, I have a husband who understands this about me, and often times, he'll just do most of the things that need doing without me every really getting the chance. As to shopping? I couldn't imagine going by myself. I'd probably forget what I went for...that's happened all too often. I've also forgotten how to pay for things, how to use my debit card, and numerous times I forgot to get my change. Since I have help, I've given up doing it on my own, and since I can't drive any longer, it's rather a moot point. Do your stores stay open later in the evening? If I need to go out, I'll often have my husband take me later in the day if possible. I almost always will feel better at that time of day, and I can spend my whole day preparing to go. *****, doesn't it?

Oh, I want to hear all about it when you have had time to recover. I really, really want to go so badly, but honestly, I fear the flight. I'm generally not too bad on one or two hour flights, but that 8 hour flight scares me a bit.

A friend of mine asked me about this the other day. Her son has it, and in comparing "weird stuff that happens", she always has to remark how like her son I seem. I asked if it were one of those diseases in which women get a milder version...ofcourse, this she said, was sparking much controversy in support groups as some are now questioning if this is entirely true. Looked it up again, and it was a little creepy. However, I'm long past the need to go investigating every little possibility.

I understand. Really. I've been the one who's avoided doctors her entire life. When I had my babies, I had zero interventions and went home four hours later. I had a homebirth. When questionable things were found, I found reasons to downplay them. And then this hit. I was very, very lucky. My primary care doctor knew that something was up and referred me immediately. I was diagnosed very, very quickly. However, I've read about all those who weren't as fortunate and who've had dreadful experiences. So, in the back of my mind, I'm really afraid of being perceived as a hypochondriac even though I haven't been treated as one. This has probably impacted my care as I'm loathe to bring up symptoms. I gloss over a **** of a lot. Just in the past few weeks, I've been seeking care for my sudden hearing loss. Still trying to work through the appropriate channels, but I have to admit, my confidence is shaken. As much as feeling as if I'm being viewed as a hypochondriac, I feel as if I'm being written off as someone who's beyond help due to the autonomic dysfunction. I have this horrible feeling that losing half of my hearing is just being taken as another really bad thing that happens to someone like me. I wish I had words of wisdom. Fortunately, I have doctors who are most often likely to work with me and let me suggest treatment options. Yeah, every now and then I get frustrated at this...but maybe its the best we can do.

Rene, I take labetalol. I also use Catapres. Between the two of these drugs, my angina attacks have been curtailed immensely. It does still happen from time to time, but not on a daily basis! My heart rate is controlled, and while I'm still very orthostatic (my bp plummets when I'm upright), I can't tell you how much I'd rather deal with that than the sky high heart rate. I can't say I'm particularly more functional, but I am more comfortable, and you know, that counts for a heckuva lot these days. I was very afraid of starting labetalol. Years ago, I had been put on atenolol, and it was horrible for me....truly made me feel as if I were dying. Took me a long time to reconsider beta blockers. I was finally told that I needed to control my heart rate and blood pressure, not because it would make me "better", but because I wanted to live to see my kids raised. Made an impact on my way of thinking. So, I took the labetalol, had a few side effects for a month or so, but I'm so glad I stuck it out. Wasn't anything like my reaction to atenolol. I've tried a few anti-depressants for autonomic dysfunction. Some I couldn't tolerate at all, but I could tolerate a low, low dose of Welbutrin...everytime I tried to increase it past a pediatric dosage, it made me feel as if I was going to stroke out. So, needless to say, I didn't increase it. I thought it made me feel a little better at the time, but after a couple of years, I discontinued it and to tell you the truth, I could tell no difference.

Are you being monitored for risk factors? I know I am. And yup...my cholesterol is high, I'm insulin resistant/borderline diabetic and have a strong family history of cardiovascular diseases. On Sunday, I was guilted into making a trip to the funeral home as my 62 year old cousin had died suddenly of a stroke. I had not seen this cousins in 20 years, and I found that his sister was in a wheelchair due to having had a stroke. Their mother, my great aunt died of a stroke, as did her mother...all in their 50's. My mother's family is even worse...her mother is the only one out of 6 children not to die of some kind of sudden cardiac arrest...two of her siblings died very young, one at 12, another at 32. The rest died by the time they were 60. Now, this sounds depressing, but I know exactly what it is that I need to watch out for. My mother and her sisters are in their seventies. Yup...they all had hypertension by the time they were in their 40's, and two are diabetic. All with high cholesterol, but they are taking care of these problems through treatment and awareness. I'm trying my damnedest to do the same. Heart disease is the number one killer. Probably half of the adult population is at at least as high a risk as you are. Those are just the sad facts. Should you take the anti-depressant? I can't tell you that. All in all, I'm not a big fan of them. Some studies indicate that they are very little better than placebo at treating depression. However, I know many, many people who feel they have literally given them their lives back. I take a beta blocker despite having prinzmetal angina. It's actually helped. Its not a "typical" beta blocker in that it's non-selective and works as an alpha blocker as well. It keeps my blood pressure from spiking, helps, along with other drugs, in keeping my heart from soaring away at 160 bpm and yes, it helps the chest pain.

There seems to be an association, by anecdote at least. My father was diagnosed with Parkinsons, but I wonder about MSA as so many MSA patients are mistakenly diagnosed with Parkinsons. I also believe my father has had mild NCS his entire life and I'm sure my grandmother, his mother, had POTS. There's not likely to be any extensive work done in the near future confirming how this happens, but we've always known that certain diseases or conditions tend to "run in families". That's why we're asked about family member's medical histories.

Three weeks late, and that's been my usual pattern for most of my life.

I don't take midodrine, but I constantly have a tingly scalp. The "writing on scalp" thing, well, I sometimes have a feeling of water running inside of my head? I have a lot of weird feelings in my head. All equally hard to describe.

I've used the Catapres patches for several years. This does offer a superior delivery system that maintains a better level of the medicine in the blood stream. I pay nearly $200/month for this as insurance does not fully cover the name brand. This has been a very good drug for me. Alone, it's not enough to bring down my heart rate, keep my blood pressure steady or stop chest pain. It is helpful, however....I found that out a couple years back when I tried to reduce the dosage. Forgot about how much worse I felt without it. I've come to the point that I except medicines that might just provide a little improvement or relief. I've long since quit looking for that magic bullet. If a small dose of clonidine helps your son to sleep, well, even if he doesn't get anything else out of it, that might be enough to justify taking it. Before I started with the Catapres, everyone told me that I'd have a couple weeks in which I'd feel AWFUL when first starting it. That really didn't happen. Ofcourse, I was so sick at the time, I'm not sure how I could have felt a heckuva lot worse. I started on the patch with the smallest dosage and there was no difference in symptoms at all...so we moved up to the next step. Then it started helping...and it still didn't make me feel "worse" for any length of time. Maybe if your son continues to use this he'll start to see side effects diminish soon.

Well, a recent study showed that by simply apologizing, doctors were significantly less likely to be sued...so a humble attitude makes excellent economic sense for doctors...forget the "it's the "new age" patient who are driving up our cost" argument. This is very timely. I'm that patient who does her own research, and usually manages to diagnose herself as well as request what should be the appropriate treatment. All in all, I'm fairly all right with this, as long as I have doctors who will work with me on this level. This is the way I am, and while at times, I might bemoan the fact that I have "to it all myself", I know that in the end, I'm personally not happy with anything less. Now, that all said, this week I've been going through a dilemma with my PCP. He's been our family doctor for 20 years. I like him, he's a great guy, and while he readily admits that his knowledge about my condition is almost zero, he was the guy who sent me on to the appropriate specialist 14 years ago that allowed me to get a diagnosis in a matter of weeks verses the years I've heard it took others. He's never doubted me when I've told him something was wrong...he just sends me to whatever specialist he thinks will help. However, like all of us, he's not getting any younger. In the past couple of years, I've noticed that he's slowed down considerably. I guess that's what working 18 hour days for years on end will do to a person. Anyway, with my sudden hearing loss, he's stuck on the idea that I had a stroke, and couldn't even manage to get my testing orders correct and I've waited over two weeks to get the most basic of testing to rule this out. I'm frustrated, to say the least. I've been seeing his PA, and I really, really like him....he's a younger guy, really on the ball, and very, very interested in learning. Guess I should have asked for him this time. So, I guess what I'm saying is that while I'm disappointed with my doctor's behavior in this particular incident, I don't feel quite right in totally "throwing him under the bus" for this one incident. He's been great in the past, and I like his PA and will probably work with him more. And you know, this is all because I've had such a favorable opinion of him...he doesn't know it all, doesn't pretend to know it all, and for a patient like me, with my temperment, this is a fairly good match. Maybe more doctors should adopt a more humble attitude.

We don't know for sure that the blood pressure/heart rate going low is the cause, but being that I woke up with extreme pre-syncope and had the low blood pressure dream, it's a top possibility in my book. Now, will the medical establishment ever totally agree with me? I don't know. Part of me thinks they are too locked into their "there's no such thing as too low" arguments. So, they'll nod and sympathize and agree that I might have a point, but when saying anything more declarative, well, I'm not holding my breath.

I don't want to harp, but it sounds as if this doctor is talking in circles and putting up a very defensive argument. I still recall my friend with what is termed as "malignant VVS" who's heart actually stops when he faints. His doctor noticed that he was hyperventilating, too, when he had an episode. He underwent therapy to avoid this and he did improve...however, that wasn't the genesis of his problem, nor did he doctors ever pretend that it was. The hyperventilation will no doubt make the problem worse and quite likely start a whole new cycle of crash-recover-crash, but other than that, well, I reserve my judgment on this doctor's theories.