morgan617

my hubby seems to be able to see a bad spell coming on me. he says i just look funny, and sure enuf, bam. i have absolutely no idea what triggers them, or keeps them at bay. if i did, i stay far away from the triggers tho! morgan

blue, have you had your stool checked for white blood cells, or parasites? or even occult blood. are you still having diarrhea? if so you really need to see a gastro doc to get things checked out. typically a food poisoning will burn itself out and not go on and on. i think a lot of us never really knows what triggers this. i've been sick forever, so who knows. but if you're still having problems you need to see a gut specialist. most gut problems like you describe won't show up in blood work, unless it's anemia, or elevated sed rate, which just indicates inflammation somewhere. good luck! morgan

happy birthday deb! morgan

julie sorry you had to go thru that. my gastro doc had a really horrible nurse in his endoscopy unit. i asked her to put the hep lock in my rt hand as i only have two good veins and the one in my arm is for big stuff. she said, i guess i'll just put it where i feel like it. so i told her where she could put it. she jammed it into my only decent vein, so when i went to the back, i told my doctor she'd better not be there the next time i came, and he fired her! so sometimes they do listen to you. but no one should have to deal with crappy nurses with attitudes. having been a nurse for 30 years, i find the attitudes these days of nurses very disheartening. and since most places hire with a fire or hire at will, there's no excuse to put up with this kind of treatment. i hope it gets better and you feel better. i just go back and forth between loose and stuck. sigh morgan

knocked me on my bum. couldn't function but did help digestion. also made me feel like creepy crawlers under my skin. yikes morgan

sue so sorry mom is so sick, have they checked her for inner ear disorders? i know when i have a meneieres attack it can last for hours and i am violently ill if i even move my eyes let alone my body. have they tried, valium, or meclizine? if they say it is actual vertigo, celexa will not will help. i sometimes go on a prednisone dose pak when attacks are severe and won't stop. this doesn't sound like ncs, and i know autoimmune diseases happen with dysautonomias. maybe an ear nose and throat specializing in meneires or inner ear disorders would be of more help. good luck and hope she feels better soon. morgan

gees justme, i thought i lived in podunkville. i am sorry but a pacemaker only controls to the heart rate and has nothing to do with heart attack for goodness sake. as for the tamponade, or fluid around the heart, you are right that's pretty rare. but then we are such special people.... we get to have all the complications. glad she is better and you do a lot!!! don't sell yourself short, your wife is VERY lucky to have you and i feel blessed too. i think she and i may be in a minority here. but maybe not. but it sounds like it. keep up the great job you are doing. there are special places in heaven for guys like you and hubby! morgan

my doctor has been very up front with me also, and tho it's not really what i want to hear, at least he's honest. it's better than being strung along and lied to. we do try different things, but he has said you will never be well again all we can hope for are more quality days. it is hard to hear, i know, but unfortunately sometimes it just is. you might try a different doc that is more willing to try more things and see what happens. like a second opinion thing if you really like this doctor. hope you start feeling better soon. and vent away! morgan

deb, glad the pain got better but know what you mean. i am pretty much used to all this stuff, but when something new crops up, i just wig! i can't help it, no matter how much i tell myself it's just this or that, i still wig. i hate er's too, some not so pleasant experiences, but again you shouldn't mess around with chest pain ever. they are getting much better at listening to women and starting to treat them as aggressively as men (never thought i'd see the day ) and as i said, women's pain can be totally different than a man's. take care and find a good cardiologist. if you have palpitations and stuff i recommend an electrophysiologist, because regular cardiologists don't really deal with our type of arrythmias. best, morgan (lots of deb's on here, so will keep morgan, we must all be in same age bracket . morgan

there are also inner ear disorders that can cause problems. a virus called labrynthitis or even meneieres disease. i know one more thing. but there is a difference between vertigo and dizziness and that has to be distinguished. if the room or you actually feel like it or you is spinning around, it's vertigo and inner ear, if it's just that icky everything feels not right unbalanced feeling that's dizzy. if you have vertigo, it's a good idea to see an ear nose and throat doc as they have many meds to help with this. as far as the dizziness, i just try to deal with it. i do have meneires and take meds for it, but notice the more tired or stressed i am, the more "dizzy" i am. hope that helps morgan

i was diagnosed with ist versus atrial tach and i did have ablation. they found an abnormal area, but even after they ablated it, it was variable. ten days later it all came back after a night of svt, vtach and other assorted heart hijinks. about six months after the ablation ( i have never been able to work again and ssdi on first try) we got a packet from ndrf and they said do not do ablations for dysautonomia. oops. too late. now my heart is really crazy wacko. i truly believe there is no reason why a person with pots wouldn't have tachycardia lying down. the heart just gets irritable from being over worked. and there can be areas that just take over and set off rapid fire heart beats. it sure doesn't feel benign when it's happening does it. morgan

my husband always goes to my cardiac appts as those are my worst, but definately not only, problem. he is very careful to explain to the doctors what he observes and i often find as just me said, i don't even realize i do this stuff or act this way. sometimes it's a real eye opener. but bless all those spouses out there who are towers of support and bless those few and far between doctors that really care. my doctor isn't an expert on this, but he definately cares and is worried about me. he's done a lot of research on his off time to try and help me. it sort of makes up for the ones that have patted me on the head and said, are you de[ressed debbie. oh heck no, body of a 95 year old at 49, but no big deal JERK. anyway, my pcp is great at least. morgan

wow, after these horror stories i read about ssdi, i feel so blessed that i got it! i am sorry for everybody who is struggling so hard. when i first applied we almost went bankrupt and even tho what i make is only about 1/3 of what i did, we are certainly lucky to get it. sometimes, although i would not wish this on anyone, i do wish the people in power would have to deal with this for a few months and then maybe things could change. it seems that the michael j fox's of the world are a lot less than the morgans and debs etc. they at least don't have to wonder where their next meal is coming from. i'm glad you have a supportive church tired and i totally understand about family. it's just my little nuclear family here to deal with. good luck and keep fighting for that ssdi, they want you to give up, so just say no. morgan

deb, you need to see a doctor for this. anything that concerns chest pain should be evaluated. angina can be atypical for women, not the classic stuff you always hear about. it could be anything from gallbladder to heart, but should not be messed with. rather to go and feel foolish, but then what's new, than to let it go and find out you shouldn't have. good luck! morgan

melanie, thanks for your input. my pcp did call twice. and sent records of every test known to man i have. but even after the apology, they refused. just don't know why. wouldn't want to go there now. have talked to dr. robertson at vanderbilt and they are scouring my chart to see if i fit any criteria for research, mainly baroreflex failure. so keep your fingers crossed. thanks again for input. morgan

my doctor told me there are all kinds of docs out there that can't deal if the fact that they can't fix everything so fall back on the "hysterical, all in your head" syndrome. he said it's a matter of insecurity and they suck. i had to laugh, because how many docs will say this about other docs. i go to him crying because of what one of the docs he's sent me to says and he says, why do you care about what that jerk thinks. you know something is wrong and i know something is wrong and that's all that matters. he's right. it is soooo annoying to deal with these guys, but now i just laugh at them thinking about what jerks they are and they are going, what what. they never figure out that i've got them figured out. morgan

if you see a cardiologist, be sure to see an electrophysiologist. they specialize in inappropriate rythyms. man can't believe i'm not sure how to spell that, as it is my life foggy syndrome anyway, they know more about the special tests you need as opposed to a regular cardiologist. good luck morgan

sometimes things feel suureal, like in a dream. that's the only time i have any real anxiety, because it feels like i'm going crazy or something. hate that feeling. morgan

i do have heart problems, but i don't have pots. i have malignant hypertension caused by dysautonomia, so kind of a different set of problems caused by same system. morgan

man, melanie that's great, but how did you get into him. i have all those problems and he refused to see me because of them! he sent me a very patronizing letter about how he doesn't deal with chronic fatigue and don't i have a doctor where i live capable of dealing with it. i was seething mad. i wrote him a scathing letter about how my doctor wasn't asking him to see me for cfs, as it is not a real issue with me, and he was a jerk not to even look at my records. i got a two sentence letter of apolgy, but no appt. i'm glad it worked out better for you. it is a relief to have a diagnoses. no one wants to be sick, but it's worse being sick with no diagnoses. hope they find the right combo of meds for you. morgan

there are about as many symptoms as there are people with this disorder, i'm beginning to think. i will say one thing. i had eps and ablation last year and it was the worst thing that could have happened to me. that does NOT mean it would be for you. only a cardiologist experienced with these syndromes can help you with these decisions. and the pain is awful. i am on a heart monitor now, and it's because i was having so many arrythmias i thought i was going to die and my son would find me. i was more scared of that than what was happening. all the resaearch i've read says pots is not fatal. it just feels that way sometimes. i am by myself all day long and find my cat gives me comfort. i do not worry about being alone, but i hate the thought of not being home and having something happen, so i don't travel anymore. i never use gas at the dentist. and i have had a few surgeries and not really had any problems, except the healing seems to take a little longer. just get plenty of fluids. morgan

zoloft tends to cause sleepiness, so is best taken at night. it is usually titrated from the lowest dose up and stopped at lowest possible dose that helps. some people just need a tiny dose and some a larger dose, everyone is different except that it is started low and you work up and when you stop, you titrate down. these types of drugs should never be stopped abruptly, not because they are addictive, but just because of the nature of the drug. antidepressants are not addictive meds. morgan

gwem am so sorry for your troubles. have you tried boost or ensure or something, just as a supplement that might be alittle easier on your stomach? i drink stuff called soy silk and it seems to go down fairly easily. i have lost 35 pounds and have basically a non functioning esophagus. i find that the soy silk, (which is just a soy type mild fortified with vits and stuff) doesn't upset my stomach so much. it's not as rich as boost or ensure, even tho i do drink boost for the calories. you can get it at costco. you might try just really bland foods like cream of wheat, bananas, applesauce and stuff, things that are not so hard on the stomach and easily digestible. morgan

i don't have panic problems, but i do have an inner ear disorder that causes me to have to take valium. i've had the looks, the lectures, you name it. i have been very sensitive about it as i am a nurse and have seen plenty of people abuse drugs. but lately, with the way my health is, i've put taking it on the bottom of my list of worries. if i have to take a little something sometimes that actually helps me, with all the stuff out there that makes me worse then screw it, i'm taking it, and i don't care what people think. my gastro told me i was an addict. i said okay, so deal with it, it's not your concern, it's the concern of the doctor who gives it to me. he said well, okay. excuse the above language, but i'm not going to feel bad about the little things anymore. as for the cats, we have a kitten we've spent 1400 dollars on in the last two weeks. she's got severe asthma and a terrible uri. so i sure can understand the worry and stress. they are just our babies and it's too hard to let them go like that, just give them up i mean. i also worry about my husband although i'm very lucky, he's solid as a rock and never gives me reason to worry. but he is normal and healthy and has healthy urges that i can't meet anymore. bless him, he is so good to me, but believe me, i've had my share of moments when i wonder if he'll stay if i'm like this forever. i think it's a concern for most of us that isn't really addressed too much. i guess the thing is just to keep the communication lines open. and i am so sorry for the loss of your friend. it's a real wake up call. i have also in the past had problems with one of my sons. sometimes i look back and wonder how i've made it this far. but i have just learned one day at a time. anyway, didn't mean to give my life story, but just wanted you to know others have been there and we somehow manage to survive and go on. hang in there and take care of yourself. morgan

same here, just know with weather changes, i'm going to change too. i notice the heat more and more seems to affect me. i used to love it, now it makes me sick and here in washington if it rains it will drop 20 degrees in 15 minutes. it's awful. morgan