bjt22

Well, this is a boyfriend and not a spouse. If it were a spouse, I would say that "fairness" and "half and half" have little to do with it. In a marriage, that goes down the drain. Each partner contributes what they can and the other takes up the slack. It's a commitment that goes beyond fairness, that says, in fact, even when things aren't "fair" I'm going to stick with you.

That said, I can't imagine the shoe being on the other foot in my household. My husband is a great guy. I'm sure it's sometimes hard for him to understand why I can't do very much, but he never really questions it and just takes up the slack. To be brutally honest, if it were the other way around and I was constantly having to do that, I'm sure I'd be resentful from time to time. I always try to remember that when I'm annoyed with him over some little thing or other.

You're right in your initial assessment...your sister is a bit of a nutjob. I know this is not the place to indulge in political discussion, but right now, there are thousands and hundreds of thousands of people that are being reached by the "but it's different when it's me" arguments. You can't argue with these people. They will never see any one else's circumstances as being equivalent to what's going on in their own lives. They are always "special".

I know family is family, but there comes a point when family relationships are detrimental instead of positive. As emotionally and mentally functioning adults, we need to understand when this happens and not let ourselves be made part of some larger dysfunction.

I really don't sweat, but I often get warm and feel as if I should be sweating, or imagining that I can feel sweat, if that makes sense. Sometimes, I can literally be too cold and too hot all at the same time. Very difficult to describe. And yes...it's very often related to being upright or something else that's causing my blood pressure to change.

Some meds actually can make this more pronounced. I've noticed more of the "I-feel-like-I-should-be-sweating" since I've been on Mestinon. It's a side effect.

I've always had a very small window of "comfort level" as far as temperatures go. If I get too hot or too cold it takes me a very long time to either cool down or warm up.

My own opinion is it wouldn't bother me much if they called it something besides POTS. I tend to say almost anything else to describe my condition because I think "POTS" sounds dumb. If they do rename us, I hope it will be easy to say, whatever it is.

I TOTALLY AGREE.

Yes.....for some reason I was symptom free or pretty close to it on Saturday. First time in months where I spent a whole day actually feeling pretty good. And I have no clue as to why. My BP and HR were running very low all day and yet I felt OK. I'm thinking perhaps it was because my BP and HR stayed low...no spikes and crashes or erratic readings.

Anyhow it was nice while it lasted. I'm back to feeling crappy again.

I feel much better if my blood pressure just stays bottomed out. I don't feel "well", but definitely better than if it's higher and has further to drop. Same with heart rates.

I drink water while fasting. Most agree that this is all right. Do I drink too much to be considered in a "fasting" state? Possibly. Couldn't do it otherwise, though.

I think a large part of my problem has to do with the caffeine withdrawal that I experience while fasting. I've often quipped that caffeine is my main "drug of choice". I tend to keep a glass of diet coke with me at all times and sip to keep it in my system. While fasting, ofcourse, I'm coming off all caffeine. Not good, evidently. The blood sugar thing isn't great, either, and as you know, getting up and out of the house early in the morning for the actual drawing of the blood is no picnic.

And yeah...I can give the term "thin skinned" a whole new meaning! I'm literally "thin skinned".

If it comforts you at all, I have probably had autonomic dysfunction for my entire life...including during all of my pregnancies. I can look back now and see where there were irregularities...I think my gestational diabetes might have been related, as well as the constant anemia and erratic blood pressures that really didn't fit the pre-eclamptic pattern.

Should your sister, at some point in time, decide to have a baby, maybe just watching and letting her know that if anything comes up, well, you're there.

The only problem I have is that all my blood draws have to be fasting draws. The fasting is a definite problem. I'm supposed to do them every three months, but to tell the truth, I'm pretty good at managing putting them off to the point that I usually only have it done twice a year.

I'm a very easy "stick". My veins practically lay on top of my skin.

I tried it a few years ago. I, too, was a little concerned as I believe much of my fatigue centers around my cardiovascular function not being what it should be. Didn't see how this centrally acting drug would be much help. I was right. I tried it for about a week, and it made me feel worse. It did not lessen the fatigue, rather I was still fatigued but felt as if I was carrying around additional 10 pound weights on my arms and legs. It also increased chest pain.

Sad thing was that this is a VERY expensive drug, and I ended up throwing several hundred dollars worth of it down the drain. Literally.

Sure, I have lots of times in which, laying flat on my back in bed, I will think "gee...I think I will do this-that-and-the-other-thing". Then I get up and reality strikes back yet again. And yes, even after a decade and a half, part of my brain still believes that if I just "tried harder" I could accomplish more. I've come to believe this is a form of denial. I think it's easier sometimes to think I could do something than facing the reality of being unable to do something. You know, like I COULD do this or that, I'm just choosing not to do it.

It's an individual decision. I'm assuming your sister is of normal intelligence and will seek out appropriate pre-natal care should she become pregnant.

I worry about my children. My daughter, who has been diagnosed with a mild case of NCS, donated a kidney. Yeah. I gave her my best advice, and she shared this with her medical team. Fortunately it turned out all right for her, but there you go. We have to allow adults the room to make their own decisions. I'm sure that if your sister had certain symptoms arise that she would come to you for medical advice. Let her know that if she ever questions such symptoms in herself that you'd be glad to help. Don't link such discussions to the possibility of pregnancy, however. That's too much of a hot button issue.

Garlic in and of itself doesn't seem to bother me, but hot, spicy foods definitely do. Not only do they make my autonomic symptoms worse over all, but many such foods are real migraine triggers for me. Taco Bell food comes to mind.

Yup. Have at least a couple of those spells a day. My whole life revolves around trying to function in some way around them. Some success with that...I'm very good at planning now. And I have to plan EVERYTHING. Tomorrow, for example, my husband and I will probably have an appointment at the bank. Totally necessary. So, today I'm doing nothing. I won't even cook dinner, most likely. I'll take a shower tonight, and with luck, I will feel decent enough to get myself dressed and presentable sometime around noon tomorrow. Wanted to go to my son's house today to see the grandbaby, but if I had done that, well, I'd need tomorrow to sort of get recovered.

How to explain? My favorite phrase is "feeling like something the cat drug in". I guess I'm at a point where I accept that feeling, so it's just part of my existence. I'm either working towards feeling that way, feeling that way, or recovering from feeling that way. All the time.

Oh, a couple other possibilities?

Queen Victoria (Empress Alexandra's maternal grandmother), Queen Mary (Bloody Mary) and Robespierre.

I love this kind of stuff!

I'll throw another person from history out there: the Empress Alexandra, wife of Nicholas, last Czar of Russia.

I can't find my copy of her biography in which it goes into detail about her symptoms. I remember thinking "this woman's dysautonomia changed the course of the entire 20th century!" It played a large roll in keeping her from attending the public functions that would have ingratiated her with the public. She hated standing in reception lines because she would frequently pass out. Ofcourse, there were the palpitations, the shortness of breath and the overall unwellness. She frequently used a wheelchair in the last decade of her life.

I don't go out very often. I don't drive. Shopping is generally no longer much fun. Hiking or swimming or other athletic pursuit? No way.

On a good day, I can get dressed, cook dinner and stay downstairs with everyone for awhile. Or, I can go out and maybe have dinner and go to one store. I can't do all of these things in the same day. A couple of weekends ago, we went out with my brother and his family on a Sunday afternoon. I wasn't out of the house for the rest of the week. In fact, I was uncomfortable being up out of bed, sitting up, for more than maybe a half hour at a time. And this is a GOOD period for me, overall, as far as symptoms go.

Well.

You might feel really bad for the first trimester. Even "normal" people feel bad. It's true that I've probably had autonomic dysfunction for my entire life, but I can tell you, even before I was diagnosed, those first three months were no picnic. I can remember feeling so bad that the thought of considering future pregnancies was just, well, unthinkable. Feeling the need to sleep 14 hours a day is not that unusual for that stage of pregnancy.

As I said, I was undiagnosed during my pregnancies. The concerns I ran into had little to do with blood pressure being too low. Rather, my blood pressure could spike. My heart rate also went up quite a bit. Again, not unusual during a pregnancy by a "normal" person. If it were me, I'd watch signs that looked as if they could indicate pre-eclampsia. Not sure if what happens to us is true pre-ecpamspia, but I definitely had period during most of my pregnancies in which my blood pressure was very labile. I'm also not convinced that gestational diabetes isn't a side effect of all of this, too. Be sure to get the appropriate testing.

Be prepared for after the pregnancy. I was diagnosed shortly after my last pregnancy after becoming increasingly likely to experience syncope within a few days after the birth.

I'm going to echo what Mkoven said...go where you have to go, if possible. I'm fortunate in living in the city with my specialist. If you are questioning information you've been given, go where you need to go, if possible. Some of us are very good at researching our own information, but if you are unsure of this approach, or if you are unsure of your doctors' accepting this information, well, do what you need to do in order to get it.

That said, don't be surprised if you receive information that you might consider "incomplete". That's often the case as far as I'm concerned. In the end, I usually assume near total responsibility as far as trying new treatment goes.

I have variant angina, too. Like you, I was very, very concerned about Mestinon as it works on acetylcholine receptors. I know that my "variant angina" certainly follows the course of many of the cases described in the literature....its an overwhelming parasympathetic response to sympathetic over stimulation. Text book. For years, this kept me from wanting to try Mestinon. Having been on it for over a year, I can tell you that I have had no ill effects concerning the angina. It's no worse and no better. I do benefit from this drug, however. Not a cure all, but definitely improves a number of my symptoms.

As to the angina? Mine is better with a combination of a beta blocker and catapres(clonidine). Blocking the over stimulation of sympathetic activity seems to really work towards blocking the over response of the parasympathetic reaction.

My son is a pharmacy technician. He fills med orders for nursing homes. He's told me, countless times over, to pretty much disregard dates. Often times, drugs sit on a pharmacy counter for a very, very long time. The date you get on the prescription might have little to do with how long they've sat on a shelf in a pharmacy. I think we need to use common sense. If it's sat in your cabinet for five years, it should probably be pitched. If you are really worried, the suggestion is that you ask your doctor to write you up new prescriptions for "as is" meds on a yearly basis. If you are like me, and hate to throw what could be good medicine out, ask your doctor to write your prescription for an amount of the drug that you are likely to use in a year.

A combination of a beta blocker and Catapres(clonidine) works quite well for me.

I still have an episode that starts like this and needs me needing to lie down and possibly sleep it off every few days. I'm also very good at feeling it before it occurs and I'm probably preventing a lot of the worst ones this way. My vision has always gone in and out with these. More so now. It's one of the main reasons I don't drive.

I dunno. Sometimes I think "hmm....should get this-or-that checked out", but most the time? Unless is something really new and unusual, even for me, I'm content to let it go. I have so little energy and I just really don't care to spend what little I have chasing back of forth between doctors. I go to my routine appointments with my family doctor and with the autonomic specialist, and other than that, well, I'm not willing at this point.

Unusual symptoms?

A lot have been listed...especially the visual symptoms. Migraine/cluster headache. Aura with and without headache. Probable coronary artery spasms. Massive fluid retention leading to congestion everywhere, including my lungs. Borderline for diabetes, high cholesterol. Balance difficulties, tremendous muscle weakness and fatigue, extreme sensitivity to light and heat, occasional difficulty swallowing....

Hah. I'll probably think of more later.

If I'm not on meds, these episodes leave me needing to go to bed IMMEDIATELY. This wasn't always the case...it happened when the whole thing really went into high gear and I was diagnosed. I'm on several meds, and I keep my eye open for anything new that I might tolerate. It's not really something that is a big deal to me so long as I'm not sick for hours afterwards. As I said, its really about the least of my symptoms as far as I'm concerned.

There have been times when I've had seizure-like activity, but that is not the norm for me. I do get the "shakes" if it's been a particularly bad episode, but I have a lot of tremors, anyway...often, just from being upright. I go through periods when the "internal tremors" drive me nuts...but, they come and go.

I don't work outside the home. I haven't in years, and I realize that I never will again. I do have a family...my husband is great and my kids are all getting older. Some have even left the nest now! As I said upthread, this is just something that I live with. I guess since I've always done it, I just don't know anything else. Truly, until this really got much, much worse and I was diagnosed, I had no idea this was abnormal. The good news about it for me is that with meds, even though I have several of these episodes a day, they usually don't make me feel worse. I just pause for a minute or two,and go on about my business. I suppose, thinking about it, I slow down and that point and usually sit for while. It's amazing how one starts compensating to the point of not even giving it any thought any longer.

What happens to me? Oh, I'll just be going about my usual business, and things will feel as if they are fading. Vision will definitely start to go, and oftentimes, I will be unable to move as parts of me go numb. Sometimes, I end up hanging onto something until it is over. Other times, I get to the floor. Since I've done this all of my life, it really is rather difficult to explain. If, overall, I'm not doing too badly, these episodes, once they are over, are, well, over. If it's not a good day, I'll feel quite ill afterwards. I usually do this at least a few times a day. Of all the crappy things I have to live with, this is something I mind least...probably because I have always done it.