bjt22

This is my version of "passing out/blacking out". I've done this my entire life...as long as I can remember. I used to think this happened to everyone!

I can definitely relate to the "overstimulation" discomfort thing. I'll be blunt...I'm a very passionate person, and I WANT to be touched, but sometimes, without, um, certain aids, it can just be TOO MUCH. A glass of wine helps, as does the use of an over the counter lubrication agent. I am not "too dry"...that's far from the problem. It's all about the over stimulation. The wine helps dulls this, as I believe a slight amount of lubricant does as well. As I said upthread...if I can manage to get past that, I am more than good to go...think about it, ladies...all that blood pooled in the LOWER regions of the body...

Twas the best of times, twas the worst of times.... I, too, have difficulty with getting tuned in and ready to go. I have found that a glass of wine helps with this. After I get there, though, well, over the past decade I've become multi-orgasmic if I can make it that far. I'm useless for the entire following day.

That's very different from anything I feel. In fact, I'm quite the opposite. I feel as if everything needs to slow down so I can catch up. My speech and thoughts don't "race"...it takes me quite some time to get them together a good deal of the time.

This was a supplement that actually made me feel worse. Quite disappointing. Valerian root also made me worse. As did magnesium supplements. On the other hand, ginsing, St. John's Wort, and high doses of B-complex vitamins did provide some relief for awhile.

Late to the game, but I just want you to know that I totally understand where you're coming from. I've been very lucky in that my husband has always been great, but he's always had to work, too. For years I suffered all kinds of angst over not being able to do what I know needed doing. I still do...but, kids grow up, and even though I really can't do any more, I feel as if I have some breathing room now. Peace of mind, too, in knowing that what I've been through hasn't totally wrecked my children. As to doctors? I really feel for you there. I've been very lucky. Even having good doctors, though, I've long since come to terms with the fact that trying to get much done through the medical community is enough to lead one to insanity. I always want to tell them "if I felt like going here, doing that, seeing this person or that person, or having all of these new tests, etc., well, then I wouldn't NEED them." The problem is I don't feel like doing all of those things.

Yeah, people say foolish things. Part of the human condition, I suppose. I'm sure I've said my share of such things over the years...like to think I'm getting better about it, but who knows? Anyway, if it will make you feel better, I've been on the receiving of well meaning, but yes, foolish comments myself, plenty of times. I'll share some of my favorite examples. I'll start with my mother. Well meaning woman, who just really never totally got it. She tries, and these days, after more than a decade, she is doing better, but she far from realizes the full extent. Anyway, when I was first really sick, after the birth of my last daughter, I was pretty much bedridden for quite some time. I'd call my mom and try to tell her how difficult it was being here with all the kids and not being able to fully do anything, and her suggestions were so off the wall they were almost funny. One time, when I mentioned that I had not been able to leave the house for sometime, she said "well, I'm sure you have plenty of time to get some things done around the house. Why don't you get the walls painted?"! Huh? I could barely get out of bed and when I did so, it was to move from my bed to the sofa in the family room. Years later, she had a bad case of the flu followed by bronchitis. She was sick. After a week or so, she called to tell me that she was still so sick that my aunt was bringing her and my dad meals because she was too weak to stand up in the kitchen long enough to cook. Hey, Mom...that's been me FOR YEARS! Where's my meals from well wishers? Fortunately, my family never minded eating a lot of frozen food. I also had a very well meaning friend. She really, really tried to understand and she'd call everyday just to chat and help me feel included. Her favorite thing to say was "I KNOW just how you feel...I'm exhausted, too. I got up today at 6:00 AM, got the kids off to school, went to work (she was a teacher), got off, picked my son up, went to this store and that store, came home, cooked dinner, cleaned up, went to this event or that event, came home, did laundry and now I'm totally wiped out". Yeah. I'm "totally wiped out" from getting up and trying to get into the shower. She meant well, though. She really did. Trying to empathize in her own way. As to the "getting older" stuff? You know, this maybe says a lot about me, but in many ways, I'm kinda getting a kick out of seeing other people my age start to also develop chronic complaints that force them to at least slow down. Feeling rather superior again, as I've already dealt with all of this and have become somewhat accustomed, although I do still reserve my right to make my own complaints.

I think it depends upon your doctor's willingness to work with you. It seems as if you are someone who keeps up on all the latest developments. If you have a doctor who is willing to take your suggestions as to treatment options, well, maybe there isn't a need for the trip. On the other side of the coin, it might pay to stay on the "patient list" with Dr. Grubb in case something arises that you need the most expert advise. A trip every two years?

One glass of wine can ease angina/cluster headaches for me. That said, I can feel the alcoholic effects of just that one glass. No tolerance. Very cheap drunk/date. Two glasses of wine when I'm feeling fairly decent can definitely cause slight to moderate enebriation. Not always a bad thing...hey, is it so bad to not mind feeling crummy every now and then?

I wish I could be more encouraging. I've dealt with this a long time, too. Right now, I'm feeling rather imprisoned because of the weather. Some evenings, I can go out after dark for a bit. Yesterday, I had to have my husband take me for a quick trip to the store, and it was not good. And this was without doing any "preliminaries"....I just brushed my hair and went. I totally understand the whole take-a-shower-do-hair-get-dressed-then-feeling-too-bad-to-do-anything-else problem. I know you feel bad about your kids. I feel bad for mine, too. However, because this has been going on so long, I'm now seeing that my kids weren't harmed in the ways I was afraid they would be. Sure, they were deprived of some things....especially my younger kids. I will probably carry around some guilt over this until the day I die. My husband has always tried to take up the slack, but you know, it just isn't the same, is it? Right now, my saving grace is that as nasty as I can feel now, I've been worse and I've gotten through that. There will no doubt be times when I'm worse again, and I'll get through that, too. We do that. Each time I think we get a little better at it.

I do believe that some of us might be "hybrids"....we might have more than one of these processes going on. That might account for the severity is some cases. What if, for example, one is genetically predisposed AND develops an auto-immune type response as well? One could have significant neuropathy as well as an inborn NET type deficiency or something along that order.

Genealogy is actually a hobby of mine. I've done pretty extensive family research, and so far, every line that I've traced back goes back to the British Isles, excepting one Native American great-great-great grandmother. All of my ancestors came over early, too. The last to get here arrived in the 1780's. Other than that, they were all here by the late 1600's. In our family, we joke that we are "more British than the Queen"...which really isn't a joke as she's much more German than British herself. This is definitely something that seems to be genetic in my family. I am quite certain that my grandmother on my father's side had this. My dad had a mild version as well. My mother's side also presents some questionable traits. My paternal grandmother was the only one amongst her siblings that didn't die of sudden cardiac death. My mother's sister had some kind of unexplained seizures for years during childhood. My mother and all of her sisters developed hypertension by the time they were in their 30's...and these are not people you'd look at and think of as having early high blood pressure. All very slim, small women. Two of my children have mild NCS, and if they were actually tested, I'm sure the rest would prove to have it as well. Almost all of them have migraine. At one point, it was speculated that in order to have a really severe case of autonomic dysfunction, it's likely that traits from both parents need to be passed on. That would explain why some people have very "mild" cases and others, like many of us here, are downright disabled by it. We got double whammies.

Oh, yeah...far less "sick" episodes. Without all the medication, I'd have several a day. Now, we're down to maybe one a day, and usually this is a result of doing things that I know will bring it on. Catapres patches come in three strengths. I started on this drug before the beta blocker. One the smallest strength, I noticed no change whatsoever. When we moved to the medium strength, there was a slight improvement. Adding the beta blocker created a greater improvement over time, as I adjusted the strength. I've played with drugs over the years, but the combination of these two drugs is entirely necessary for me. It's far from perfect as I still have problems functioning, but as to the "comfort level"? I wouldn't dream of going back.

The stress test was a good thing for me. It clearly demonstrated that I lose measurable blood pressure quickly after assuming an upright position. Yeah, I've had tilt table testing, but the stress test is something that more health care professionals are able to relate to, I believe. My EKG during stress testing was slightly abnormal, too. Again, anyone's guess as we're dealing with a few irregularities. This helped point out to many what I was actually dealing with. Yeah, they should all understand the ramifications of a failed tilt table test, but in reality, they don't. The stress test is much more readily understood.

Your problems sound a lot like mine. I will occasionally pass out, but less often now. Ofcourse, I think this is just because my brain has figured out ways to get around oxygen deprivation. Catapres(clonidine) in those with autonomic dysfunction has actually shown to be able to help stabilize blood presssure. It can help venous return in those with autonomic failure/neuropathy. I have to caution, however, that the Catapres patches are expensive, and insurance often doesn't want to cover the entire expense. People do take generic clonidine, but it needs to be taken often, and it still doesn't manage to maintain the same steady level of medication in the bloodstream as does the Catapres patches. As I said earlier, I've come to grips with the idea that my blood pressure is going to drop when I'm standing. I have to say, though, that the drop is better than the drop accompanied by the high, high heart rate.

Catapres (clonidine)? I use the patches instead of the generic clonidine, they seem to work better and cause fewer problems. Neither a beta blocker or catapres alone does the trick for me. I seem to need both, plus other drugs. Yeah, my bp still bottoms out when I'm upright, but the dropping bp feels better to me than the sky high heart rate.

wish I could be more helpful, too. I have several different kinds of chestpain, no doubt caused by a variety of factors. I do most definitely get the kind you are talking of. It is heart rate related to a degree, I think, as it's not as bad now that through medication my heart rate is not as high. I also think, in my case, it's related to blood pressure dropping. If I've been upright for more than a few minutes, I rarely have a measurable blood pressure. Think the heart just isn't getting enough blood back into it. Like any muscle, I suppose this causes that achy-ness.

Well, I can only speak for myself. I actually do better overall when I keep my blood pressure "stable and low". What makes me the absolute worst is to have mine spike up and then drop down, over and over repeatedly. I am going to be orthostatic. That's a given. However, the difference for me seems to be letting my blood pressure be low and drop 10-25 points vs. letting it be higher and drop 50 points. I am on a regimen of catapres, labetalol, lasix and mestinon, amongst others. I list these because they are what keeps my blood pressure "low and "stable", or sort of stable. Some of it seems counter-intuitive. However, it does all work together. I need the lasix, (a diuretic) because apparently, keeping my blood pressure low means that pooling can equal massive edema for me. Edema that doesn't resolve through regular measures like lying down or keeping feet up. You might feel really crummy for a few weeks after going lower. I had a natural "bottom out" a few years ago that really had nothing to do with meds. However, over time, I guess the body adjusts, and that's when I found that I actually did my best. Also, there's no reason to reduce quickly...I've also found that starting low with meds and allowing my body to gradually adjust certainly is the better approach.

I have a "different" tolerance to alcohol. I don't tolerate it in a way that a "normal" person does, but if I'm on my meds and partake of it in a way that suits my needs, I can do all right with it. Took me awhile to understand this, but now that I do, well, I indulge in a glass or two of wine a couple nights a week. I will never be able to party in the way that normal people do....such "partying" would leave me passed out on the bathroom floor by the third drink. I also can't have even a half glass of wine unless I'm able to go to bed shortly after. Oddly enough, I've found that a small drink can often help with the angina and migraine/cluster headaches.

I get it a lot when I'm in cluster headache mode. In fact, it is a leading indicator of cluster headache in a lot of people. I occasionally will notice a slight case of it when I'm not in a cluster cycle, and I, too, have questioned MG, especially since I responded to mestinon in a way that someone with MG would respond. Back to the cluster headaches....much of the literature surrounding them talks a lot about imbalances between sympathetic and parasympathetic responses. This imbalance shows in the head and facial areas for whatever reason. I don't imagine that this is too different than what many of us experience with POTS or other autonomic dysfunctions. In fact, my doctors and I don't separate my cluster headaches from this...it's just all kind of part and parcel. Why we sometimes get headaches with the "imbalance" is anyone's guess, but I can keep a better handle if I address all of the symtpoms as part of the whole.

Sounds very much like spasms in the bladder. I get those, too. I get them all up and down my urinary tract, including in my kidneys.

Oh, and as to cause? I've always thought it was as excessive parasympathetic response to excessive sympathetic stimulation. That seems to be the case for me.

I've always had a very difficult time explaining that when my heart rate drops below 70 bpm I'm in bad shape. From previous monitoring, I know that when I'm sleeping, my heart rate often bottoms out into the 20's. I know this still happens because I dream of passing out when it does. I've often tried to make the case that this is what is causing many of my problems with edema. Evidently, I haven't made that case well enough because even the ANS savvy doctors will look at me and say, "but that isn't bradycardic"....no, it isn't for most people, but apparently it is for ME.

You are in the same boat I'm in. My meds make me more comfortable, and to be fair, I was told that this was the goal..."we'll make you as comfortable as we can". I always thought that sounded rather ominous, but beggars can't be choosers, right? I am more comfortable, but that doesn't mean I'm significantly more functional. I'm "managed", too, and at times I do admit to getting a little resentful when it feels like no one is terribly interested in maybe helping me do better still.

Eased while walking around? That sounds like mine can be many a time. This does indicate atypical angina, or "vasospasm". Surprise, surprise, it's another sort of autonomic dysfunction. It's believed to be a case where sympathetic and parasympathetic controls are out of whack. The same mechanism will trigger cluster/migraine headaches when I'm in that mode, and I'm often dealing with the angina and the headache at the same time. Really, a glass of wine does help me. Or, maybe it just helps me not mind so much! Excedrin helps, too...much as it does with a migraine and the aspirin in the Excedrin is certainly a safeguard.