morgan617

I have an Omron and it errors if my heart rate goes above 110, every single time. However it seems to do okay with BP's. The wrist machines are not supposed to work as well, because the further you are from the heart, the weaker the pulse. The brachial (artery in the inner elbow) is a much stronger pulse and the machine much more likely to pick it up. I am hyperandrenergic, so my pulses are all bounding...I think it wouldn't matter with people like me, but if your pressure drops big time, it may have a harder time the more distal you are from the heart. I never saw wrist machines used in the hospital or any office. If it checks out with your doctors, then go for it. There is nothing that will ever work as well as a manual that's quality controlled, so it's like everything else, what works for one, may just not work for another....morgan

I fall all the way down. I can't be in any place that's totally dark ever, I have absolutely no sense of balance, however I do have meneire's, which is a vestibular disorder. (inner ear) morgan

I went to a rheumy who ran a bunch of blood work. I have an elevated ANA, and some other weird stuff, but he told me, as he was walking out the door, with his back to me, he didn't have time for "people like me" whatever..... There is only one group in my city and you can't switch doctors ( my son's had a liver transplant and he hasn't seen an actual doctor in almost 2 years, because they refuse to have him covered by another doctor in the same practice, even though his doc can't see him and they are the only group) Unless you are on remicade, they will not see you, Jake had five of his appts cancelled by them in one year. My friend on remicade has never been cancelled...her co pay is 450 dollars every 3 weeks. It speaks volumes to me. I hope all goes well with you and you get some answers. And I have one and only one vein too. If they blow that one, they don't get any...hope it heals up fast! morgan

Jennifer, my son takes it and has never had any problems. he's been on it for several years now for anxiety and depression. He never had any side effects, and he does run a bit tachy (no full blown POTS stuff, but same kind of history I had at his age) He chose to use CPAP over stopping it. The pulmonologist wanted to mess with his drugs and Jake said...NAH, just give me the machine. He started at 10 mg and is taking 20 now. Good luck sweetie...morgan (the doctor didn't think celexa was a problem, but maybe one of the other drugs he takes, but wanted to mess with all of them....he takes around 30 pills a day)

Our neighbor kids have them and right after they got them, couldn't walk for two days, so they do use the muscles. But they'd be screaming hip fracture to me...

Some of the contrasts have a laxative in them, which may be why you are bloated and having loose stools, but once you get rid of it all, it should be fine. No lasting effects I have ever heard of. morgan

I've got blisters from electrodes last week that I wore for a few hours. I wish I could help. They do have electrodes that are made for more sensitive skin, but will refuse to use them for a Holter. I've never heard of a 30 day Holter, geez. 48 hours is the longest they do them here. Sorry I can't be of more help. One question...I don't know of any patches that will stay on that long, so do they expect you to change them? With an event monitor, you change them every day to every other day and only have 3 ptaches. The holters I've had have had about 10 patches that have to be placed pretty specifically. Just wondering...morgan

Here, a for profit hospital (like there are really any not for profits anymore) has only one obligation. To stablize an unstable patient, then they can boot them. It's sad and depressing and so non ethical, but they can do it. We have a couple of both here. Although the other two are applying for a for profit status. The for profit will stablize and turf them to one of the other ones. It's pathetic. They should have checked more carefully however and I'd probably check with the insurance and the state regulatory boards in her state on whether he could that or not.....good luck and hope your sister is better. morgan

Stacey, I can't know how you feel about kids. I had 2, while very young and before I realized how sick I was. I am so blessed to have them, but I'm not sure it's a vice versa thing. My kids don't say they missed out on much, but we had 2 vacations the entire time they were growing up. I had to work and was just too tired for travel and the stress involved with it. I was exhausted all the time, so I worked and then was too tired for them. I know I have a lot of guilt about the things they missed out on, because of my health and my husband hasn't had the best time either. I have days where I feel okay about my life and days where I just want to give up. I do not regret having my kids, but I think somedays they regret having me. So, I guess what I'm trying to say is, there are pros and cons either way. Having had my kids, I would never wish I didn't have them, and feel blessed I do. But in hind sight, if I had known what was going on with my health, I wouldn't have subjected them to a mom with this many problems. I also realize that is easy for me to say, as I do have them. So, I feel a little funny saying anything. There are several women on here in your spot, who must have a better idea of how you are affected by this. I can only give my opinion as someone who did have kids and now know that I am not the only one who has suffered from this illness and understand the ripple effect it has on everyone I love and that love me. I just wanted you to know I was thinking about you and am sorry you are being faced with such difficult decisions. Things that shouldn't have to be so difficult. I will be thinking of you and hope you can gain insight from some people here. morgan

I am totally the opposite, there is nothing worse to me than being cool or cold. give me the heat any day. But extremes either way will bother me. The old thermostat just ain't what it used to be. Do dungbeetles like hot or cold patootie? morgan

Glad you are feeling better Nolie. Betas can be notorious for causing depression. But while one may, another may be just fine. Hopefully cutting down will help, but if not, you might just try another one. I can't take Inderal, but I do okay on Atenolol. I hope you continue to improve every day, and am glad you have such a supportive family and friends. My hubs works so many hours too and I have many guilty feelings about it. But he knows if the tables were turned, I'd do the same for him. As I'm sure you would. Don't beat yourself up over things that you have no control over....morgan

I sometimes describe it as walking through 4 feet of set jello. It's impossible to describe if you don't have it....morgan

I contacted them, talked to a Dr. personally, got an appointment, sent my records, got ready to go and got a form letter in the mail saying never mind, don't bother coming, we don't have any interest. I have no idea why they lost interest. My primary called them at least 5 times, left 5 different numbers he could be reached at, and he never heard from them. I've heard good and bad from various people. Some have had great experiences and some really regret that they went. Ernie's is not the only bad story I've seen here. I have never received an official diagnosis either and have survived. Is it depressing and discouraging? Of course. But I have a definitive diagnosis on my periodic paralysis and still got another "conversion" diagnosis this week, with unequivical proof in hand. I know I'm really sick and the people close to me know I am, and I am satidfied with that at the moment. (After a bad doctor or ER visit, that may change momentarily, but then I'm okay again.) Only you can decide if you want this, and how badly you want it. All we can do is tell you what our experiences are. You digest those and then decide. I wouldn't go there now if they paid me, because of the way they treated me and my doctor. Others won't go anywhere else. If it's a research project, I don't think you are allowed to see the results, so I am not sure that would be much help to you. If it's for diagnostic purposes, that may be different. No one can tell you you have to go or you can't go. I know this is not an easy decision by any stretch of the imagination. I guess if it were me, I'd take a piece of paper and write the pros on one side and the cons on the other and see which is the most favorable. There was a time I would have done anything to get every diagnosis I could for validation. I just don't feel that pressing need anymore. You may feel differently. I guess most people do. I just don't, but that's just me. Whatever you decide, it will not be the right or wrong decision, it will just be your decision. Good luck sweetie....morgan

I have emailed Oprah and Dr. Phil at least 5 times apiece....I think they just have certain agendas......ah well.

Welcome Amy! Rest up and get stronger! morgan

The only rhyme or reason for me is that there is no rhyme or reason. I have some triggers, but even those can flucuate. I think of it like having a short in my system, (think a light socket) and you never know when it's going to blink off and on. Just be as prepared as you can for when it does. Wasn't that helpful! But that's just what I do. I could go crazy trying to figure out what does and doesn't trigger things. morgan

I'm sorry your daughter is having so many problems. Have you tried an Ear, Nose and Throat doctor that specializes in inner ear disorders. Sometimes the problems with vertigo and dizziness involve the eighth cranial nerve and that won't show up on ekg's and heart monitors. Sometimes we tend to attribute every symptom to one thing, and then discover it's a whole other problem. Does she feel dizzy, or does the room feel like it's spinning, or does she feel like she's spinning? Is there a position that works for her? Like she feels better lying on one side or the other or on her back? There are a few conditions that can cause this. I have meneires, which really has nothing to do with my pots, but makes me dizzier than a doorknob. Vertigo and dizziness. I know the last thing you she want to do is see another doctor at this point, but with that particular symptom, it's what I would do. Good luck sweetie...morgan

Maybe the heat is the trigger. When I drink or eat hot foods, I get some weird reactions at times. There was a guy on Stories of the ER the other night and every time he drinks or eats cold foods, his heart rate bottoms out and he faints, due to a reaction of the vagal nerve. I would imagine heat might have the same effect on some people. It was pretty weird. I'm not a huge chocolate fan, but I do like it now and then, so hope you can figure out what it is and that it's not chocolate! morgan

My hubby and son have cluster migraines, so go long periods without any and then get a bunch at once. Jake, my son takes topamax, which is a major help to him. Hubs takes a very small dose of beta blocker, which helps him. They still have occasional breakthrough headaches, but not anything like they used to ( knock on wood) They both use imitrex nasal spray and do very well on it. The shots make them feel weird and the pills are hard to keep down. The nasal spray tastes awful, so they always make sure they have a mint or something to suck on. Neither one has POTS (although my son is showing some minor signs) It's the one thing I don't seem to be plagued with (knock again) Hope that helps....morgan

I don't think anyone is saying not to do something simply because it didn't help them Megan, but I may be wrong. I was just saying that I don't have the stamina to cook from scratch most of the time. I used to cook all the time, just can't now. Not lazy, just feel lazy, poorly chosen wording, sorry. I think we all have to do what works for us. There are so many things that I just can't eat any more. I would give anything to be Oprah and have my very own chef, but am not sure even that would help me. There's no doubt that eating a healthy diet is the optimal choice. However, for me, and I'm sure others, with the same kind of gut problems, some foods, no matter how good they are for you, are not tolerated. For others, it makes them feel much better. I think our diets and how they work for us are as varied as our meds and how they work for us. I know if I eat more than 80 grams of carbs per day (normal being about twice that) I get very ill, while others need more carbs than recommended. Therefore a banana and an orange would not work for me, because they have more carbs than potassium. However, it obviously helps you, so go for it! Hopefully people here understand we aren't telling them what and what not to do, only our own experiences. Just about everything with this illness is a trial and error process, including how and what we eat. I personally find Beechnut baby food far more palatable than Gerbers, but someone else may do better with the Gerbers. So, I might prefer Beechnut, but would not attempt to force anyone to like it better, just because I do. morgan

I eat whatever I am going to be able to get down. If I had the energy to do all the work required for making everything myself, I'd be looking for a job. We do eat fast foods and stuff, because I generally just feel too terrible to stand in the kitchen and prepare food like some of you. But I don't have small children anymore and I'm 52. I wasn't raised on organics and all that espensive jazz that's out there now, so figure the damage is done. I also wonder about all the ecoli they are finding in raw fruits and veggies now...yikes. But I am lazy and so is my gut, so as I said, whatever i can get down that day is okay by me. I do stay away from things that really trigger problems, and I'm not overweight, so it's just the way it is......morgan

There seems to be new stuff coming out on Barrett's. I have it, as does my 26 year son. But they are starting to question at which point it should be of real concern. They actually saw a regression in mine with treatment. My son and I have all the same results, isn't it fun...so not Jake takes Nexium twice a day and 40 mg of Pepcid at bedtime, as the mechanisms of bile production and how the gut works at night is different than during the day. So The proton pump inhibitors like Nexium work better during the day and the histamine blockers work better at night. Have the doctors discussed this with you? Jake also got Domperidone from Canada and takes 8/day. He says it doesn't hurt, but doesn't seem to help either. So I guess I can't help you. Nothing works for me. My manometry shows completely disorganized contractions and strictures. I assume the contractions are autonomic and the strictures from reflux, caused by poor motility. I'm wandering all over here, but do not know what's being done for her now. Sorry if it's on another thread and I missed it. They talked about surgery for Jake, my son, but his motility issues contraindicate surgery. morgan

Sheridan, you will be in my thoughts and prayers! I hope this helps you, although I know it must be disheartening.....morgan

I've had really poor unrestful sleep forever. When I got diagnosed with fibro, I was given sinequan (same class as elavil) and ended up having to stop secondary to really bad tachycardia. I used to wake up 20-30 times a night when I worked. My pcp says no reason to do a study, because what would we do about it? I'm thinking...well CPAP if indicated, but don't push stuff anymore. My son has had two sleep studies and just started CPAP, he has no REM sleep at all and sleep apnea. So no meds, just the machine. He and my hubs (narcolepsy) were seen by pulmonologists, who speicalize in sleep disorders. We have been really pleased with them. I don't think it matters what they specialize in, as long as they also specialize in sleep studies.....morgan

I was a nurse for 30 years, and did it because there was never anything else I wanted to do. My question is, I started in nursing long before we used gloves for everything, we got exposed to so much stuff and did that affect me in any way? Will never know, of course, but when I think back on the things I was doing before the days of being so dang careful, I can't believe I never seemed to get anything, or maybe I did.....the one thing is, I have been pretty unhealthy my whole life and I do believe the wear and tear physically on my body didn't help. You weigh 100 pounds and pull and tug on 200 pound people long enough, it's going to do some damage...... Also we are doing things to and for people that can be life threatening at times. It's not like forgetting to leave the pickles out of a hamburger (I am not in any way saying my job was better or more important, just a bit more dangerous to people at times) so the emotional stress of nursing or any health care position, or any position where a mistake on your part can really hurt someone, can maybe speed up the disease process you already had. As far as being in the medical profession helping me, it has certainly not worked for me! I have had to do all my own research and struggled as much as anybody in getting any diagnosis. And can't get any specialists to see me. So I'm not sure on that one. It is interesting to see how many people are in health related fields, but then I do think maybe it gives you a little better idea of where to look for things at times. morgan