morgan617

i have meneires and have vertigo all the time. i have to sleep with a nite light, because the total darkness throws me way off. flickering lights and weird motions will almost instantly make me sick. but mine is worse at night too, hence the lights, that really helps. morgan

i had a rash for 6 weeks after an event monitor. but the last one i had, they gave me special patches, and even tho they irritated a little, they were much better and i lasted for 3 weeks with it. they should be able to find some for you. morgan

i often feel like i'm running a low grade fever for no apparent reason. and i've never been a fever person. weird. morgan

i really have to say i have the most supportive hubby on earth. he gets mad if i talk about working. he works 60-70 hours a week and cooks and cleans. he even does laundry. i only let him do stuff if i absolutely can't, but he has never complained. we have no sex life at all, no real life, can't travel, can't even go to movies, but he NEVER complains. and he's as faithful as they come. i'm sure there's a sainthood waiting for him somewhere. hoipe he enjoys it when he gets it. i have one son who's very understanding, because he's not well either, and one who is getting a lot more understanding. so i thank God everyday for my supportive family. my first husband never would have stood for this "malingering" pretend sickness. so glad he's not in the picture anymore. hope things get better for those of you that are struggling. morgan

so very sorry for your friends loss. nothing could be harder. will keep them in my prayers. morgan

yes, i've had those workups, i guess tho not when i'm having an episode, and have heard it makes a difference. however, have had mris too, so pretty sure it's not. thanks guys for your support. of note she heard a murmur and a carotid bruit, which none of my other docs have mentioned. weird huh, as i did not tell her i have mvp. morgan

yesterday sort of an episode like i do a lot. bp rising, a lot of arrythmias, having to void every few minutes,etc. they usually last about an hour then i get very flushed and things settle down and then i'm just exhausted. well yesterday, my face felt like it had been shot full of novacaine , as did my arm and my leg was very weak. man it sucked. i took my pressure and it was 180/110. my pulse was above 100. i haven't had this before. i can handle all the things i'm used to, but it bugs me to get new stuff. called doc on call and he said go to er. was there from 7:30 pm till 3 am. they were actually very nice. till things came out ok. she said i had definate deficits on my left side, but my cat scan and mri didn't show a stroke, so sent me on my way. now i just wonder, is this something new i get to deal with and how am i going to know whether it's the big one or not unless it happens. i can't and don't go running to the er all the time, but it was so classic for a stroke and i'm such a candidate for one who knows. she decided i must be having an atypical migraine. i've never had a migraine in my life. man i am so tired of new crap hitting every other day. and i feel stupid for even going in. then she said my potassium was low and wrote me a script with someone else's name on it. so today i mailed it to her with an explanation of why i can't fill it. how stupid is that? anyway, not a fun night. morgan ps my face and arm did not improve till this morning. bummer

man what a great girl! at least the er's should have a copy. they are particularly stupid about this. i bet the ndrf might help a little. it's worth a try. morgan

sounds like fibro pain to me too. although other things should be ruled out, it's typical for fibro pain to roam and is described as stabbing, burning,aching etc. a little different for everyone. i'd recommend some blood work, but my guess is, it will be normal or borderline and fibro is the culprit. send her my sympathies, i've had it for 29 years and sometimes it can really suck, although there are periods where it's better. morgan

what a crazy world. my pcp did hear a murmur and click this time which was not present before. it doesn't really help because the cardiologist won't recognize it. they see it as a benign condition and therefore not worthy of a note about it on the report. then he didn't even send the report to my pcp! jerky doctors. thanks for your input guys. validation is always a good thing. morgan

i try tai chi for beginners. it hurts my hips, but i keep hoping at some point it will help loosen them. my shoulders are so bad now i have to sleep on my back and i hate sleeping on my back! i have had surgery on the right one and now the left one is acting up too. darn it, i wish they would come up with something. i need a shot in my rt shoulder, but always put those off as long as possible. they only help for a little while and once in a while i have a little reaction to the steroid. gross. i think every trigger point is positive right now, because it has rained and been damp and cold here every day for the last month. so i'm with ya. i feel like the tin man in oz. morgan

nina, prayers and best wishes going to stephanie and her baby girl. both of my grandbabies were preemies and we are praying this third one hangs on a little longer. thank god it's their last one, the stress is awful! i worked in an nicu and it's incredible the things they do for preemies now. we had a gal whose water broke at 24 weeks and they kept that baby in there till 30 weeks, so it does happen. best to them both!!! morgan

my body and brain feel like a robot. brain fog and my hips hurt so much, sometimes i want to cry. it's very hard to stay in shape when attempting puts you in bed for days. so yea i know just how you feel. morgan

i get angry and frustrated, but i'm telling you, my therapist has helped me more than i could ever express. she really validates me and has actually written to doctors telling them not to practice psychology unless it's their chosen field! she has stated that i am not crazy, nor do i have personality disorders. i am sick period, and that depression is a very normal respose to chronic illness. as is anger and frustration. i went to my pcp yesterday and he almost cried. he said he just keeps failing me and he really wants me to go to vanderbilt (they lost my records) or somewhere where someone can tell him how to take care of me. i live in washington state. you wanna talk about being far away from any docs who specialize in this, try living as far across the country as you can get. he said he would do ANYTHING it took to get me help. i told him that no matter what happened to me, the fact that he cares this much means everything to mean. every doc he has sent me to has blown me off and he is so angry at them, he won't send his patients to them. so i feel very fortunate to have a great therapist and the world's best doctor, the only problem is , as they say, i'm just too da$^ complex for them. we discussed the fact that with my hypertension the way it is, i am very likely to stroke or have a cardiac event, but he said, just hang in there till i get you to someone who can help me help you. isn't that refreshing. no drug pushing, no you're crazy's, no judging. just wants to help me. sorry i have gone on, but i know i have been so blessed by getting a great therapist and doctor, i can't believe there aren'y more out there like them. good luck to all of you and please wish me luck with vanderbilt not losing my second set of records! morgan

it's now a constant in my life. i have more irregular beats than normal one anymore, or lately anyway. my doctor says i have developed a murmur. so just another thing to be thrilled about. just know it's really really common. morgan

wow, to have a few friends like you!!! i think it is a real struggle not only for the person with the chronic illness, but the ripple effect it has on everyone is enormous. i also think that as a person struggling with this, i frustrate very easily. it's part of the whole picture of the illness. we don't have great control over our emotions most of the time. my hubby is always saying i am not hearing what he's saying, i'm hearing what i only think he's saying. i'm not sure if that makes sense, but after hearing that you are crazy about a million times, you start to think everyone, including the people that love you, don't believe you. you even start to think you are crazy. so we get very defensive. and sometimes so tired of doing everything we're supposed to and still feeling lousy makes us rebellious at times. i agree with every one else here. just ask her what she needs from you and let her know you are there for her. and i really think she needs to see these posts. no one that loves me would think to come on here and ask advice. she needs to know how lucky she is. best of luck. morgan

i got accepted on my first try, but i don't know what they accepted it on. i have so much wrong with me. but she did tell me on the phone. good luck you guys, i know how frustrating it can be. filling out in triples how long you can sit in minutes and hours, like duh, i really keep track of that stuff. i didn't have to see a physician, but i did have to see a psychiatrist. i was really lucky, he was actually very nice and very supportive. i did tell him i was profoundly depressed about the way my life is turning out, and he said i had every right to be. so it can work out. keep the faith! morgan

i have a rotten neurocardiogenic system and malgnant hypertension. i do not have syncope. so no pots. i have actually talked to dr. david robertson, who is doing studies on baroreflex failure. you might check out that web site at www.mc.vanderbilt.edu/gcrc/adc/baroreflex.html you are right it is pretty rare. of 500 patients with autonomic dysfunction they only found 11 with this disorder. i have been trying to get in on a study there but have had a snafu, ie they lost all the records my doctor sent. i will not ask him to pick thru my chart again. it's 6 inches thick! so will probably not make it there, but check it out and see if it sounds like you. it sounds exactly like me. good luck! morgan

i knew if i came here, it would make me feel better. so many people don't realize that to some of us, our pets are just like our babies. babies that never grow up. and they are to be treated with tlc at all times, because they give back far more than they could ever receive! thank you all so much for your caring and support. jasmine is running and breathing easily for the first time ever, i can picture her. morgan

thanks for the responses. it is so appreciated. my vet said they get rescue kittens all the time and when i am ready to let him know, he will get me a very special one. i don't think i will be ready for awhile, but can't imagine never having a little lovey again. thanks again. morgan

my kitty had to go to heaven yesterday. she was only ten months old and we had been struggling with asthma and all kinds of things. she was actually on more meds than me. but we just couldn't get her well. i am so sad. we lost our dog less than a month ago and now i have no companions here with me during the day. my body is so sick and frazzled i can hardly stand it. i can barely get out of bed. i'm sorry but i just needed people to talk to that understand what emotional stress can do to you. i haven't been this wiped in forever. i know she's in a better place. it's amazing that we are more humane to our animals than to people. thanks for listening everyone. a very sad morgan

danelle, check with your doc before taking it again. morgan

danelle, i was a nurse for 30 years and the medical profession is so intolerant of illness, it amazes me! i finally said this is enough, but nursing is all i know. but i was so afraid of hurting someone i had to quit. i was very fortunate, i got disability on my first try, so it does happen. it is a 7 month procedure whether you are accepted or not, and i wasn't allowed to make any income while we waited. only you and your doctor know if it's time. it was actually my doctor that said enough, you can't work anymore. if your doctor is very thorough and takes great notes, it helps alot. i don't know if it made a difference, but i had 6 jobs in one year trying to find one i could do. it just didn't work anymore. it was very difficult as i have worked since i was 14. only six weeks off for babies and a surgery. nursing is horrible on the body and very stressful which are not a good combo for our problems. i hope you are feeling better now and can make some big decisions. by the way, i haven't driven in over a year except once for an emergency. good luck! morgan

lori, welcome and all i can say is what everyone else has. we have all been you you are at some point. i was feeling better and more validated and got shot down by two doctors in two days. so i had to come here and vent and felt much better. you don'r ever wish this on anyone, but in a perverse way, it's a comfort to know that others know exactly how you feel. we are all in this together, to listen and hopefully provide support. again welcome. morgan

at my last gastro, i had an "episode" and they kept saying not to worry, it was an easy procedure. i wasn't anxious at all. i've had this procedure about a zillion times, but i never did convince them. it went away but not before they all thought i was crazy. it happens a lot more than it used to. my muscles quiver all the time and my hands get really shaky. i hate it, cuz i'm a terrible typer to begin with , but then it leaves as suddenly as it comes on. i really hate my body. morgan