morgan617

i've taken remeron. i did not do well on it at all. the doctor who prescribed it called it a dirty antidepressant. it has a little bit of everything. i think it may work well for some, but it definitely made my symptoms worse. morgan

i took the oral dose. 0.05 mg a day. a very tiny dose. it did slow my heart rate down slightly but didn't really help my bp. when we upped it, it made my fatigue worse. but i had no other side effects at all, which is quite unusual for me. i just stopped because we were using it mainly for bp and couldn't take the higher doses. a pretty benign drug tho. morgan

A BIG CONGRATS!!!!

find a new dang doctor!!!!! morgan

if it's not normal for you, go to the doctor. 100% with nina! morgan

yep, it's all been said. morgan

i dont' think anyone can have a chronic debilitating illness and NOT experience depression at times. it can get very discouraging. it's a good idea to have a therapist if at all possible. it's good to have someone objective to share your feelings with. what you are going through is very normal, but don't let it get out of control before you get help for it. and remember, we are always here. morgan

amy, sorry just thoroughly read your last post. ask cardiologist for a cpet. a cardiopulmonary exercise test. the only difference is they are looking at how your lungs and heart are working and how they are working in conjunction with each other. it is not invasive and gives A LOT of info. it's just a treadmill with a breathing tube attached instead of just breathing through your mouth. the nice thing too is, a doctor is present the whole time and will not keep you on the machine if you start showing any stress. usually a pulmonologist will be there. it is a far more accurate test for the symptoms you are having. morgan

everything. i've had everything you can have done including eps and ablation, but excluding angioplasty and open heart. the echo is the best and least invasive test for checking for structural problems. the stress tests are hard, simply because we tend to be so excercise intolerant. i had one doctor chart i was very deconditioned, but with my heart rate, i would never be able to get conditioned. i would not get an ablation without an opinion from someone very specialized in pots. that's what finally pushed my body over the edge and put me where i am now. on disability. they thought they were doing the best thing for me, but didn't bother to ask a doctor specializing in pots. good luck. at this point, i get an occasional holter to check on heart rate and arrythmias and every two years i have a resting echo. i feel that's all that's necessary. morgan

sorry you are having a bad spell, and sorry to say, yep, that's the way it goes. it seems like you think you're getting better and then whammo, another spell. hope it improves quickly. just know it will get better. morgan

there is a "normal" for pots? lol. it's the weirdest disease i've seen in over 30 years of being a nurse. i used to think the curse was the worst. what i'd give now to have that be the worst problem i have. sometimes i think with this illness, we tend to become fixated on things. i know it's very hard not to, (right now I'm trying to deal with my bp and hr dumping) but you have to find some things to just take your mind off it for awhile. we could totally drive ourselves crazy dwelling on every symptom we have or don't have. it changes all the time and though we all have common threads, we still all have different things going on at different times. this is a great place to see something and think oh my gosh, i thought i was the only person in the world that had this! but we need to try and be positive and not obsess on everything either. if you are symptomatic with things, they certainly need to be addressed by a doctor, but if you investigate you will find that some things are perfectly normal. and even tho my hr and bp would be considered normal by some doctors, they are not normal for me and i have symptoms. so i am going to see my doctor. i guess that's the way it works. it's good to have input and validation from others, but if you have real medical concerns, you need to see your doc. morgan

my bp and pulse used to be way high, now they are in the pits! what a crazy illness. my doc said he doesn't have to worry about a stroke anymore, just me passing out and getting a head injury! it's one extreme to the other. i have an echocardiogram about every two years. my heart hasn't changed much. and i'm going to be 50. i have been sick a long time. so if the structure is okay, i agree with others, you don't need to worry to about it. it's just annoying and frustrating. i decided since my heart rate has dropped from the 100's to the 60-80's at rest, i would start to exercise. well, am going one minute and heart rate goes to 130. all i'm doing is going up stairs. go figure. maybe will get better with time and conditioning. morgan

i think most of us have had some symptoms our whole lives when you think back. some just never progress to the severe stages. i think it can be very mild or severely disabling, the whole tamale. so yea, i do think so. morgan

happy birthday stacey. am sorry this is so very hard for you. i am glad you have a supportive husband and family to help you through this. these times seem so hard, but you just have to live one day at a time. it does get better, it just takes longer for some than others. and as an ex ob nurse, let me tell you, lots of women have babies way past 37! so don't give up. hugs and prayers your way! morgan

heart rate and bp are supposed to rise from lying to standing to accomadate the results of gravity and blood pooling. my doctor can't find a 24 hour bp monitor, says they are hard to come by now. morgan

btw, that breathing thing drives me crazy! my pcp said it was sighing hyperventilation caused by anxiety, so i said well, why do i mostly only get it when i'm asleep and wake up feeling like i'm not breathing? no answer for that. but i have actually gotten sore ribs from it. bummer. morgan

so sorry about what's going on! i have a lot of pain in my legs, but's more of a cramping behind my knees and in my calves. it is so painful, and my muscles twitch constantly. it sounds like you have shin splints without the benefit of running to get them. about your mom. my mom had 3 open heart surgeries and would never quit smoking. i finally just had to distance myself from her. i knew i couldn't help her and she certainly didn't want to help herself. i know how hard that is, but you didn't cause your mom to drink any more than i caused my mom to smoke, and i finally realized there were just things i had to take care of for myself. like my own family. i guess that will sound harsh to many people, but no one on this site asked to be sick and we would do anything not to be sick. it is so frustrating to me to watch people destroy their health when i would give anything to have my health. i know how hard it is to watch someone you love destroying their lives, especially a parent or a child, but don't destroy what's left of your health trying to take care of something that can't be fixed. you won't be a bad daughter, just a sick one. i wouldn't be saying this if i hadn't gone through it myself. i used up so much energy i didn't have for so long, to no avail. you and your mom will be in my prayers. morgan

shelby, thanks for your concern. since my son is chronically ill, he is always seeing someone. his pcp is following him very closely with his topamax and he's had no problems and blood work is okay so far. i am a little nervous about it, but it sure is helping him and the nti appliance is helping too. i want him to get used to that, then go without the meds and see what happens. he takes 16 pills a day now as it is, so it would be nice to get him off something! morgan

good luck sue, sending good thoughts and prayers your way! morgan

my readings have gotten high too, and i have tons of floaters. my opthamologist just says, come in if you lose your sight. pleasant thought. so i just live with them. morgan

danelle, i told my doctor that if i walked into an emergency room with a man exactly the same age and with exactly the same symptoms, i would be given an ativan and told to go home and he would have every test known to man and be admitted for several days. he got so mad and said that wasn't true, or at least he hoped it wasn't. a week later there was an article in the paper that said more women than men die of heart disease because their symptoms are ignored! so he said i was right. duh... it is just getting to a point where women are not being ignored, because they can't ignore the statistics anymore. it's a sad state of affairs isn't it. that was not said to scare anyone. but it actually happened to me. even tho my ekg was abnormal, they wanted to give me ativan and told me i could go to work! they never would have done that to a man. ok off the band wagon. i must say that in my 12 years of cardiac nursing, it wasn't until the last 2 or 3 we started seeing more womwn being admitted. morgan

chronic fatigue syndrome will do that. i have perpetually swollen glands in my neck, always rt sided. they are also very tender. morgan

good luck gayla, you'll be in my prayers! morgan

runnergirl, i have been rejected by mayo, nih, and vanderbilt. we are going on speculation also, as my labs are all basically normal. except my epinephrine is low. weird. hope you get the help the you need and the meds are helpful to you. the clonidine did help my pulse, and i also have very limited exercise tolerance. morgan

hi runner, i took clonidine for awhile and it helped. i was just so hypertensive, it didn't really help that. but i really didn't have too many side effects, just a little fatigue. it is not a beta blocker. it is recommended for things like baroreflex failure where your bp is pretty much always high. i do not tolerate ssri's or beta blockers. sorry i can't be of more help. the problem is, you're right. every one is so different in their responses, it's always a trial and error. what i have started doing tho, is asking for samples, or only getting a few from the pharmacy so i don't end up with a zillion unused meds in my cabinet. morgan