morgan617

the only drugs legal to get in canada are drugs that are not available here. however, if i didn't have coverage, i'd certainly consider it. it would be nice if we could boycott pharmaceutical companies that are bilking us big time. and now with this vioxx thing, i think a lot of drug prices are going to soar. my hubby was on it for 2 years! morgan

i can never seem to shut up, but thought it was just because i am home alone all day, so when i get a chance to talk to someone, i let it rip! i know it is annoying to people as i have seen it on their faces. how mortifying. but then i trip up, because my brain is going two hundred light years ahead of my tongue. so i never seem to make any sense. i think i am slowing down a little, but only because i am going through a rough spot. and feel too crummy to talk much. but i will tell you, i have the most vivid and weird dreams every single night and it feels like all i did was dream and never got any rest! that drives me crazy. morgan

nina, so sorry you are in such misery. i have had a very long history with ovarian cysts and they can be so excruciating. i hope they get to the bottom, so to speak, of this soon. i used to call my pelvic pain exquisite, because that term seemed to fit. i find it amazing that someone can be in that much pain and a doc says oh yea, we'll squeeze you in for that u/s next year sometime. always compassionate. maybe he needs his testicle in a twist and then he can change his tune, a little more on the soprano side. morgan

welcome! yea what you describe fits into orthostatic intolerance problems. but what does your doctor say? it's important to let him/her know this is happening and maybe have your blood pressure and pulse taken in his office, going from lying to standing. however don't let them take it immediately. wait until you start having the symptoms. also have you been tested for thyroid, or anything else? the problem with POTS is that it can also mimic a lot of other things, so it's sometimes a matter of ruling out other things till you get to pots. this site has lots of info on pots and orthostatic intolerance and you should read about it. i am sorry you are having these problems, because they really bite, but it is really important for you to get a very thorough physical, including blood work. sometimes it takes a long time and can be very frustrating, but we are always here and will help you as much as possible. good luck. morgan

mine are all low too, so it must mean something but Lord only knows what. my pcp says i have oi and my nuerocardiogenic function *****, but doesn't know what to think of low results as opposed to high. someday we will know. morgan

gosh, who'd have thought i'd get a lesson in Yiddish. that's great and since i am annoying it's perfect. as for normal xrays, i told the hubby this am when they call and say it's absolutely normal, i'm gonna cut it off with a butter knife. he just put his head in his hand and said okay so you will be minus a leg when i get home right? oh he knows my traitorous body so well.... that is my bad bad body hiding behind all the basically normal test results. i am seeing gene tomorrow. so i see a guy and a girl. i am SOOOOO special. if he's cute it will be a bonus i guess, but gene is a somewhat old fashioned name, so i don't suppose he will look like a firefighter. but my pcp still looks good after 20 years so it all evens out. and i will be good, even with only one leg. it's probably my brain that needs an amputation, but as it is only the size of a peanut, it wouldn't be worth the weight loss i'd like to acheive. morgan the wonder weenie

hayley, i've actually been rejected by all the major centers here, so no chance of finding any answers. i know you are very frustrated and this is so very hard. i am so sorry you are going through this. i would suggest that if you are bedridden, you try to do some passive exercises, like just leg lifts or something. i am really paying for my inactivity now and think if i had at least done a few simple things it would have at least helped a little. just try to hang on til you are seen and know every here is pulling for you. thank God, it sounds like you have supportive parents. morgan

what the heck is a noodge?! i think it sounds like something i should be proud of! lol. actually i have toned it down because it's a lot harder than i thought, so i am being a good girl, (petulant look i shall wear on friday) i got my knees xrayed today. you won't believe this, unless of course you've had your knees x rayed. i can't bend it or straighten it too much or squat on it. so how do they xray knees. why you bend them, straighten them all the way out and get on all fours like a dog, which of course makes you bear weight right on the kneecap which is killing you.... i asked her if this was candid camera or what? she started laughing and told me to be sure and watch tv... it wouldn't be so bad except i had really hairy legs... this is getting to be more fun than a few hours of tachycardia at 3 am... will get results tomorrow. so all you mean mommies out there, weenie girl is now being compliant

EMILY!!! behave yourself and feel better soon!!! morgan

should i change my call letters????? weenie girl

gayle, it's so unfortuanate that docs don't take the time to explain these things. it's very sad that people walk out of an office terrified. sometimes it is not comforting to just hear, oh it's not worrisome. easy to say when you are not the one having it. i am not a nice person, because i have wished some of these things on people that are arrogant, because they'd change their tune in a heartbeat if they had to experience it. (so to speak) just think of supra as "above" and paroxymal is as stated. comes and goes typically suddenly. knowing this doesn't make it feel better physically, but hopefully it will help emotionally. hopefully no more episodes of it either! morgan

beverly, first welcome to the site! and to nicole also! i personally have a type of oi that involves not being able to use salt or florinef as i have such severe hypertension. but the majority of people on this site are in nicoles boat. so i am just writing to say that you will get lots of support from them. and lots of ideas. have they tried nicole on a small dose beta blocker? that seems to be very helpful for some people in evening out the pulse and bp. you may find she is intolerant to many drugs, but there are so many out there, hopefully she can find one that helps. i am so glad you found such good doctors. so many are still dealing with doctors that just don't care or don't want to bother with complex people. hang in there and keep us posted. morgan

sorry michelle. this is too heated a topic and believe it is in the best interest of all to keep our views to ourselves. thanks for your support. morgan ps besides, i'd rather whiiiinnnneee morgan

sorry opus, i meant to say my potassium is always too low...weird but true. morgan

thanks everyone for your support and advice. i was only supposed to do 3 reps, but what a weenie!!! i did ten! well i have paid for that one. i did it again anyway.... ha. i choose not to be a weenie any longer. a month ago i was walking a whole mile, now i can barely get to the fridge. intolerable i say. she told me she knew i was going to overdo and she would know and she would be very upset with me. so then instead of a whine i will have to be petulant... she is actually very very good and said we are going to be doing a lot of "tweaking" that sounds like more excitement than i can handle but seriously, i am hoping at least not to end up with some sort of walking device at the rate i'm going. and you are right emily. is it something special that we are the worst they've seen or do you roll over and bawl. i guess i choose to feel validated, because at least she did not say, boy are you crazy or what!!! always look on the bright side of the something or other , can't remember the words. i think i'm manic today, so will sign off. thanks a lot for all the support. and no more political rant from me on other posts! ah i hate when i do that.. but i love all you guys and gals. morgan

went to physical therapist yesterday. she said i have the most profound muscle weakness she has ever seen in anyone. she said she doesn't know how i am able to walk. i told her i don't, i fall to where i am going...har har. she did not think that was funny. so now i have two therapists to see. her for passive conditioning and one for chronic pain. she said she thinks my pain tolerance is so high, i actually have no idea how much pain i should be in. she thinks i have a cracked knee cap and don't even know it. i told her i whine a lot, but she said my entire back was in a spasm and i didn't even feel it. i was shocked. i went for my hips and knees. she said there is no way at this point i will ever be okay, she just wants me a little better. so this should some kind of fun. wish me luck. oh she made me tell my doctor i was falling down all the time. she said she was writing it to him so she was giving me a chance to come clean ha. so i did this am, but with his crappy nurse, so she probably won't even bother to tell him. ha ha. and they won't work on my knee till i get an xray. that was a crash into the wall and having your knee stop you episode. so signing off is morgan, the worlds weeniest person. ta ta

sue, if you know anyone who quilts, you get a small one made and have everyone sign it . or have pictures transferred on or something. it would be like a remembrance thing. and quilts can be manly. if you don't know anyone, call a quilt shop and see what you can do. it's like a congrats card that will never wear out. just a thought. morgan

gayle, superventicular means, "above the the venticles" that means it's an arrythmia in the atrial part or the beginning of your heart beat. the upper chambers. this is actually good, as venticular rhythyms are much more serious if sustained. it is also callled pat or paroxymal atrial tach. starts suddenly and then stops suddenly. it is actually pretty common. valsalva maneuvers as mentioned above can be very helpful in stopping it. such as coughing hard, sitting and leaning over, like people sometimes do when they feel faint, bearing down like you are having a nice big baby or poop. these are all things we taught to people that had lots of problems with it. it is pretty benign, however if it is sustained for quite awhile, which is long enough for you to become lightheaded or nauseated or anything, you need to get it checked out. in rare instances it can comprimise the system if sustained for long periods. if the heart beats too fast for too long it will have a hard time getting an adequate blood supply to the body. so don't stand around if you are having it. at least sit down. but as i said it's a whole lot safer than runs of ventricular rhythms. please excuse my spelling, brains a little slow today. i have them a lot and for some peculiar reason i feel single beats more than runs. weird. hope that helps. morgan

gayle, i take clonidine and i do okay with it. however i only take .05mg a day which is half of the smallest dose. they started me at .1 and it was just too much. but it really has fewer side effects than most of them. you might try a tiny dose. but get a pill cutter, they are tiny little buggers! it's also very cheap because it's a really old drug, so if you don't tolerate it, you're not out much. take it at bedtime as it can make you sleepy and it does give you a dry mouth. good luck! morgan

wow sue, that's great! how old is he? morgan

new docs always want them as a baseline. my pcp weighed me 20 years ago and then never again till i started dropping so much, now he weighs me everytime. but you can always refuse. you can tell the nurse what your scale at home says then she will just write, "stated weight" i used to only let my gastro weigh me, but then the problem was, when i did start to lose all my weight, they didn't have a starting point for me. but they believed me so that helped. good luck with your appointment. maybe you should just mention one problem each visit.... oh by the way i think i forgot to tell you last visit... everytime you go in lol. within 10 years or so they'll have your whole history. if you have as many symptoms as me lol. morgan

gayle, i have been intolerant my whole life, but the reactions are getting worse and worse. i remember taking a pamprin for cramps when i was about 14 and ended up in the er. that's just over the counter. my doc says giving me meds is like playing russian roulette. he says, i want to make you feel better without killing you, but that doesn't seem quite possible. at least he understands. morgan

i can barely tolerate any meds. it's awful because some of the doctors i used to go to just thought i was non compliant. but i'm not going to take something that makes me feel worse than i already do. i just had to lower my bp med. for one thing they were patches and i blistered from the adhesive, but the lowest dose was just too high, so i switched to the pill and now take half the dose. it's better. i have been on almost every beta blocker you can name, ssri's, everything has such weird effects on me, i'm always terrified to try anything new. i think most of us have these problems. my pcp said that when you try to treat one thing, but you are dealing with a whacked out autonomic system, it has a tendency to disturb other systems and that's why we have so much trouble. it may help that one thing, but tweeks other systems. morgan

i tried yoga, but it really hurt me at the most basic level. i have very poor balance and have fallen at least 4 times in the last few weeks. but my son's friend gave me tai chi tapes and those aren't so bad. not so much positioning and staying there and no real balancing acts. how ever, it is the most basic form of tai chi, and have not been able to advance. i have to get xrays of my knees and have arthritis the whole length of my spine, and even tho they say exercise helps, it seems to exacerbate in my case. my son's friend is a yoga instructer and he's bugging the heck out of my son to start. he has juvenile arthritis. so am hoping he will do it. morgan

i haven't heard of anyone else on the site using O2 to help. if you need six liters to help you breathe, i am assuming you have a lung disorder? that is a lot of oxygen. i'd be interested to know if anyone else uses it and whether you have other problems? morgan