morgan617

i've had arrythmias forever, but they are much worse since my ablation. the stupid thing is, i was always exhausted because my heart rate was rarely below 100 and now it doesn't go above 80. the cardio says, oh good, now you feel okay. WRONG. i have zillions of arrythmias and my body doesn't tolerate rates that drop to 50 when it's been over 100. that's a 50% rate drop and i'm supposed to feel good.... i really wouldn't wish this stuff on anyone, but once in awhile i think if docs could just have these symptoms for a couple of months and then talk to us..... morgan

no caffeine, no chocolate. no fun. i love diet coke but can't do nutrasweet either. i miss coke a lot. but not worth how it makes me feel. morgan

i have not had good experiences with calcium channel blockers. but that doesn't mean other people wouldn't do well. low dose bb don't tend to decrese things that much. i took them when my bp was 90/50 and didn't really have any problems except a little more fatigue. you can always just ask the pharmacist for a few pills and try it. we never know whether things are going to help unless we try them. as scary as that is. good luck morgan

mine is all over the place. high low and in between. morgan but my pulse is usually higher supine

a cat scan or mri would show abnormal adrenals. the tests are varied and numerous. i know i produce too much adrenaline, but my adrenals are fine on mri and so far labs have been normal. what is your brothers diagnosis? the adrenals sit right on top of the kidneys, and are actually pretty small if normal. morgan

they use quinine a lot for restless leg syndrome. but with our intolerances, not sure i'd want to try it. that's the only thing i know of. morgan

hi glimmer, the couch is my friend now. i just can't lay in bed as it kills my joints and muscles. i have really bad cycles too. seem to be having one now. something to do with weather and barometric pressures or something. hang in there, there are periods where things get a little better. and there are always good supportive friends here. hope you get thru this period quickly. morgan

danelle, what you said is good. if you are in a really fast heart rate, sometimes coughing, baring down like you are having a bm, or squatting and coughing will help stop it. however this is not a good thing to do if your rate is slow! we used to teach these things to people who kept having psvt. valsalva maneuvers. morgan

i think it's pretty common. my husband does it constantly and has for a long time. i do it sometimes too. i think there's a medical term for it, but can't remember. if it's just jerking legs, it's called restless leg syndrome. i tell him he's got restless body syndrome! morgan

danelle, i am on a monitor right now for the same reasons. it is really scary. it's like you finally get used to what's going on and then something new starts to throw you completely off. arrythmias are really common. if you are not symptomatic with them and they are just annoying, i wouldn't worry too much. i just asked my doc to put me on one to see what's going on. i think it's reasonable to ask for things if somethings changed or gotten more frequent etc. he or she should be willing to accomadate you. if for nothing else, than just reassurance. it's easy to not take things seriously when you're not the one going through it. hang in there and just know we all go through periods like this. it's just another little mountain to get over. i've always hated the fact i can feel my arrythmias. you know most people can't. lucky ducks. morgan

a gal i know on ssdi called and there's nothing in our area yet, so guess i won't worry about yet. thanks for your input. morgan

my son was getting 4-5 migraines a week. topamax really works well for him, but i went to my dentist and she said the fda has just approved a mouth appliance for the prevention of migraines. it's called an NTI and he's getting one tomorrow. i have one for clenching and it makes a huge difference in muscles spasms in my jaws and stuff. it's really small, just snaps on your two front teeth, so really easy to get used to. you might check into it. my dentist charges 100 dollars, but it should be covered under medical as it's fda for medical. morgan

thanks guys, guess i should have said i'm not on any meds. that's why it's so weird. am on a holter now till tomorrow. have just felt crummy all day. i think the weather is part of it, but not sure. but everytime i get up, i just feel so awful. will see what the monitor shows. especially curious about night time readings. morgan

man, this is so weird. for the last 5 years i have had constant hypertension, not episodic ,in the 140-200/90-120 range. i have had almost constant tachy cardia. over 100 for 16 hours on my last holter. for the past 2 weeks my pulse has been dipping clear down into the fifties and my bp has followed suit. everyone thinks i should be feeling a lot better, i feel awful! these things are like 1/2 of what my body's been used to. i called my pcp yesterday and told them i've been waking up some nights very dizzy sick and sweaty. i'm sure my heart rate is going really low and waking me up. he should be calling back today. has anyone had these particular symptoms occur. it would be great to think i've had a spontaneous cure, but i am even less tolerant of being up. so think my sinus node is finally burning out. weird. any input? thanks! morgan

i have constant twitching. worst is in my feet and legs, but my face twitches quite a bit too. after i walk any distance my legs from the hips down will twitch for a solid hour. my feet twitch 24/7. morgan

gayle, they need to do studies on this. i really think the numbers are out dated. glad it helped you. am going to talk to my pcp about seeing and endo. there's areally good one my son goes to. he has hyperparathyroidism. she takes really good care of him. thanks morgan

congrats sue and good luck, hope it works out well for you! morgan

actually while i was still working they were attempting to change the parameters of thyroid testing. many professionals felt the numbers were off as so many people had symptoms even tho tests were within notmal range, but if they went ahead and treated them, they felt much better. i am hoping that this will eventually happen. who knows, everything takes so long in the medical community, but it would certainly make sense. morgan

i take 2 mg of valium 4 times a day for menieres disease. valium is also a benzo, just with a longer half life. when i thought i was going to be going to vanderbilt, i did a fast taper. it was no fun at all, my body was completely out of whack. however i was rejected at vanderbilt, meneires does not go away and valium is recommended by dr. roberts for people who suffer hypertension all the time. people like me with probable baroreflex dysautonomia. my doctor has exhausted everything he knows and i have been rejected by everyone. i do not have thousands of dollars to go back east (i live in wash state) for one appt. with a doctor. i know there are people who say you just find the money. that is not possible for all of us. i really envy the people who only live a few hours from the doctors who deal with this. valium helps decrease the symptoms of my meneires, although it does not cure or stop the attacks altogether. but it also helps calm the adrenaline rushes that drive up my pressure. i do not seem to have any side effects taking it. so i started back on it. i am feeling better, but certainly not well. i don't recommend benzos for everyone, but i certainly can't condemn people who just want to feel better. i decided to taper using the ashton manual , but the starting dose to wean is 40 mgs a day. i take 8. i started at 6 in 1997, so have increased it 2 mgs in 7 years. do i know it would be awful to stop it? yea it probably would. but i didn't have the chance at the time i did wean to wean slowly as i was expecting to go to vandy and knew i would have to be off it. i know these drugs have been a nightmare for some of you, but not everyone reacts the same way, and i don't think we should judge or tell people what we should and shouldn't do. i have no problem with hearing people's horror stories, but i also know these drugs can be very beneficial to some people also. when my choice is being labeled an addict or crawling around puking with the whole world spinning out of control, i guess i will choose to be labeled. i know the ashton manual states the half life of valium is 200 hours, however all the other literature i have been been able to find, which is actually quite a lot, they all say about 50 hours. that is still a very long half life. the way i feel physically, and now emotionally due to countless rejections, i just figure 8 mgs of valium a day is the least of my problems. also my autonomic problems started long before the valium use, so i can't in good conscious blame it on that. these subjects tend to get very touchy with people being somewhat fanatical either pro or con, sort of like the abortion issue. you are either very pro or very con. i hope this doesn't become one of those type of discussions. i just feel he wanted input and here is mine. ultimately he has to make the decision himself whether he wants to take it. as does everyone. when you think of, every drug has the potential to harm someone at some time. tylenol is actually one of the most lethal drugs out there and it's an otc. so who knows. there's my 50 cents worth. morgan

am seeing my doc next month and as vanderbilt and mayo and nih have rejected not sure what will happen. i know a lot of you see endocrinologists and they have helped you, so i may talk to my pcp, but that's the only type of doc i haven't seen. so not sure what to discuss with my pcp about this. he has exhausted all he knows. any suggestons? thanks morgan

so i got this ssdi thing in the mail today called ticket to work. has anyone else received this? it sounds kinda weird to me. they say it's voluntary and they won't check your med status as long as you are in it, but the whole purpose is to get you off ssdi. so if you can't work, do you get targeted. i don't get it. morgan

our largest hospital just laid off 180 nurses due to what they call "deadbeat" patients not paying their bills. funny, they built a 5 million dollar addition, paid for by of course, deadbeat patients. i can understand a doctor charging for a phone consultation, but not for a nurses call or a refill. i am a nurse and i couldn't look a patient in the eye and say, yea i'll call in the refill, that will be 25 dollars please. no way no how. i feel a large part of the outrageous malpractice prices have been brought on by the doctors themselves, (discounting ambulance chasing lawyers) they will not hold their own accountable. it is very much a good old boy mentality and peer groups will not hold bad doctors accountable and take their license to practice away from them. you have to trust me on this one. if doctors got rid of the trash doctors out there, the insurance would have to go down because there would be less suits. and frivilous suits have no business ever being started. i believe that insurance is outrageous, our own and malpractice. there really needs to be some laws put into effect for insurance companies and guidelines for sheister lawyers. and we need to weed out the bad doctors. i could tell you stories that would make your hair fall out, and these guys are NEVER punished with more than a little slap on the wrist. it's not so much the healthcare system as a whole, it's particular parts of it that need some major changes. morgan

i'm sure there's no relation, but liver enzymes can be elevated for any number of reasons. gallstones, chronic inflammation of the gallbladder, fatty liver or no specific reason. sometimes people just have test that are a little out of whack and we never know why. morgan

i've had a kajillion of these things and never had a problem. i got versed and fentenyl. it's a really easy procedure and only takes about 10 minutes max, then you just get to have a great sleep for awhile. endoscopy is a great way to look for pernicious anemia, but there are other signs as well, burning tongue, lack of balance and other things. but it does cause an atrophy in the gut and that's why the b12 doesn't absorb well. endoscopy is a good thing in autonomic problems anyway because we tend to have gut problems and it will give you a baseline study. my hubby had severe gastritis (imflammation of the stomach) and didn't even know it. so not to worry. and just make sure you tell the nurse when you go into the endoscopy room you are allergic to latex. they have to put oxygen on you and a heart monitor, all standard, so you'll have plenty of time to tell them. good luck! morgan

welcome aboard! the only time people need antibiotics with dental work is for mitral valve regurgitation and that's not even often. it sounds like your dentist may be overly cautious, unless you have significant valve disease. i see an internist. there are no doctors in my area that know anything about oi, but i am blessed with a great doctor that does everything he can to help me. i guess the type of doctor you go to depends on the problems. if you have cardiac problems, then by all means see one, but you may find there aren't a lot of doctors out there that don't know much about this. you need to be prepared for an interesting journey in the life of dysautonomia you will find this board very useful especially at first when there are a zillion questions, and when you need to vent in frustration and when you need a shoulder to cry on. this is a great place and i am happy you found it! again welcome, and don't let me scare you off morgan