morgan617

well, this is a really belated chime in, but you know why ernie...hope your day was good and you just continue to improve! Love, morgan

I'm sorry Sara. I have been there so many times. Every thing starts to feel like a blow to the gut doesn't it? Giving up work and most especially my nursing license, was about the hardest thing I had to do. It's very hard to get past the idea that you have failed somehow, as opposed to your body being the problems. Especially when support systems are bad too. I don't know what kind of support you have, but right now it can be essential. Unless people have to give up things, they can never really understand what it's like, and how devastated you really are. If you can't work, you can't work. Is there any way to cut back your hours? Or a job share or something that will make it easier right now? All I can really say is, Many many of us know what you are going through, have all felt the same way you are, and get just as frustrated and discouraged. Somehow, after time, we seem to adjust to one more limitation and keep going, but the initial stuff is very hard to deal with. I'm not going to say, hang in there, or buck up, or it will get better, or any of those things. I will say, we all know what you are feeling, have all been there, and we all go on. Get past the new insult and so look forward to the next surprise hit we get.. I guess this probably hasn't made you feel any better, but maybe just knowing a lot of people know how how you feel will help a bit.....sorry you are so down sweetie...morgan

That would be great Miriam, just don't break anything on your little body!

I think you either love it or hate it, there's no real in between that I've seen. I was denied, so obviously I wasn't happy, but the people that love it, will defend it steadfastly, while those who had bad experiences will never say a positive thing about it. So, the best you can hope for is to go and that it's positive. The one thing all do seem to agree on, is poor follow up. I guess that's all I can say about it. morgan

I haven't got a clue. I might think encephalopathy, but it seems like that would affect her spinal fluid. I am so sorry, having had a chronically ill son for the last 16 years, it breaks my heart that you and she are going through this. I hope you find some answers soon. morgan

A primary who actually reads the things I give him and attempts to contact places like Mayo, Vandy, etc, and when that doesn't happen, we hammer something out. In a zillion years, I haven't gotten anywhere with the "big" guns, but my pcp and I just keep pluggin along.....morgan

Thanks guys, I actually did call that doc this morning, like I said I would. The excuse they gave for him not calling my doctor? He wrote a letter instead of emailing (how the heck was he supposed to know his email address?) and number 2, he's a very busy doctor. I told them my primary was the head of intensive care at one of our biggest hospitals and had a private practice, and I was guessing he was even busier, however he wasn't into production, he was into patient care. I told them I would be terrified to see a doctor with so little respect for one of his peers, it did not bode well at all for his patients, and then I hung up on them. Boy, did I feel better. Ernie, I didn't have an appointment, they wanted me to make one. I am guessing this guy charges 3-4 times what my primary does for a visit, but then the largest part of my pcp's practice is medicare and medicaid, so he's obviously not in this for the money. I won't make an appointment with him if he doesn't even respect his peers, let alone regular folk like me. It's a long drive and a lot of money for that kind of arrogance. Miriam, actually, this was about my Periodic Paralysis, which has a huge affect on my autonomic system, so the POTS thing won't work. They are always much more concerned about my potassium, than my POTS, even though it's wreaking just as much havoc. But thanks for offering. The interesting thing I note here is the number of people who have borderline or low potassiums. I am so intolerant of everything that's a drug, and yet I take a lethal dose of potassium every day to keep it at a normal level, and I have so many more arrythmias if I miss even one dose. I often wonder if it's all one thing or I just got stuck with every weird unknown illness out there in the universe. Like I'm in the genetic cesspool of life or something....my poor kids! Anyway, bad doctors are a dime a dozen and good ones worth the traumas of finding them I guess. Somewhere inside of me I must have known it was going to be like this, or I am just too tired of bad guys to get upset about it any more. I'm fine and this guy on the other side of the state can be "busy" with other people.....I wouldn't want to waste his precious time. okaymorgan

Not a clue dear Ernie. Have any of you been tested for EDS? That sounds plausible and certainly seems to be associated with POTS? It's frustrating to have them look at the most common and then sort of stop, isn't it, like it's not possible there could be one more type out there. I do really hope they get to the source of the problems. morgan

Well, I saw my primary today. For those of you that remember, I was so happy a doctor in New York finally called him. When I got there today, he had the write up this doctor had done, which was my disease 101. No suggestions, recommendations, nothing we didn't already know. ARGH He wouldn't discuss treatments new or old, just wanted him to know he was published....well blah de lah for him...that really helped us out. One good thing, my doctor and I both decided it was okay for both of us to have bad days and let each other have it. After going to him for 24 years, we are some old married couple. Dave went and helped out. He was the mediator Anyway, we decided without anyone else's help that his pharmacists would look up some drugs and we would weigh the pros and cons and see what we can come up with. He called and wrote to a doctor across the state and asked for help, and never even got the courtesy of a reply. I don't know when doctors lost that courtesy among themselves, but I find that somewhat frightening and very annoying. They called me after I contacted them, so we could make an appointment, but refuse to call my doctor and discuss whether it is worthwhile???? Stinks of production versus treating humans. Ah well, another 2 bite the dust. I brushed off my butt and will stay the course, whatever that is. What do you think it means when you don't even care that you've wheel chaired head on into 2 more dirtbag doctors???? I think I will call the office across the state in the am and let them know if the doctor can't even treat his peers with respect, I don't even want to know how he treats his patients! That will make me feel better..... I'm apathetic as hello and I'm not taking it anymore.......morgan

Do you know what her potassium runs? I mean has she had blood work and if so, what is it. Many potsies have low or low normal potassium levels which can cause severe weakness or even paralysis in muscles. But it also sounds like it could be chronic fatigue too. There are tests they can do now, like a lumbar puncture to look for proteins in the spinal fluid. (I know, many people think this is a gruesome test, but it's not, I've had it, as have millions with no problems. ) I'm not saying there are never problems, but it is also a good test to look for chronic fatigue now. I collapse a lot, but mine is related to a potassium problem...but I certainly know that ragdoll feeling in the legs. I'm sorry she's having to go through this. morgan

I have horrible reactions to any type of adhesives. I can have a bandaid on for an hour and it will leave blisters and marks for up to 6 weeks. Monitor patches are the worst thing ever invented! As far as the antibiotic creams, people can react to anything, so it wouldn't surprise me if you reacted to it. It's a med like any other. Typically I wouldn't think you'd have a systemic reaction, but you were putting it on an open wound, or at least there was some way it could get into your system and make you itch all over. Hope you are feeling better soon, sweetie! morgan

Jen, I have tried every way, except to just make an appointment and go, but it's such a fight with referrals, it just got where it wasn't worth it to me. I can't help you, but want you to know you are not the only one, I was in the same place in 2003, and it's disheartening to see not much has changed....many others have had the same response, so my advice is just don't take it personally. Like ernie said, you can get in through the back door, if you are that determined to go. morgan

EM, does your face turn red when it's burning, or just feel like it's red? I hope it's getting better. I know inflammation in the arteries can cause that kind of pain, but it's typically one sided. Hope you get some answers soon. I always tell everyone to just ignore the shaking, but there's typically something physical going on when I do it. Have you done the tachy on waking thing before? I blame everything on meds, but am not sure if you are on something new, and if the med you stopped was a new one. If it is, hopefully that's the problem and things will settle down for you. Thinking about you....morgan

I didn't even know they tested coffee as an allergen. I can't do caffeine, but have a half cup of decaf, trying to convince myself it perks me up...haha. I'm sorry tea rose, I have never even heard of it. I would have thought it was the caffeine and not the coffee itself. morgan

I posted here and it is now in cyberspace somewhere...I wanted to know if anyone here DIDN'T have horrible fatigue? It's one of my worst symptoms and I don't think I've ever heard anyone say they have lots of energy. There are so many causes for it too, tachy, brady, meds, sleep disorders, depression, pain, surges....I haven't found anything that helps with mine and can't even do caffeine to try and stay alert. I have begun falling asleep without realizing I was going to. Good thing I don't drive anymore! I think it affects about 100% of people here. Pretty pervasive symptom....morgan

You can get pain from the gallbladder in various places, referred to as "referred" pain. So it can really throw people off. My gallbladder has been dead for 20 years (20 years ago the ejection fraction was less than 20, it is now full of sludge and stones, but no one here will take it out, saying I am too high risk. Well, I wouldn't have been 20 years ago, so now I have 3-4 attacks a week and it's miserable. I hope your husband can get his out very soon and they do discover the cause of the clots and stuff! Good luck sweetie! morgan

Hi Amy, well some of us just have all the luck don't we! I am glad to see you posting, it's been a long time, and for what started out as something simple. I hope you continue to improve and become stronger each day. morgan

The more you drink, the more dilute and clear your urine gets. You actually want your urine to be pale and clear. I can pee on demand, anytime, anyplace. I pee almost every hour and it's never very much unless I am having problems, then it's gallons. If I have a surge where my BP goes up really fast, I can pee 2000 cc's in about an hour or so. So yeah, I think a lot of us have problems with that, for various reasons. I've also had blood in my urine for at least 30 years now, it has never not tested positive for blood. I think even the small amount that it is irritates my bladder and urethra and makes me have to pee more. morgan

I agree with ernie, as time goes by and you get more accustomed to the routine your body is going through, you get less and less anxious. I don't think anyone on here has never been anxious about a symptom or something that's going on. I do great until a new and lousy symptom hits and then I have to adjust to it too. It's a time thing....and it is okay to be anxious by the way. Your body is telling you to be, it's a normal response to an abnormal occurance, just remember anxiety doesn't cause POTS, but POTS can exacerbate anxiety. morgan

EM, Sorry about what's going on! I get really bad shakes like that too, when I am not feeling well....well, when I feel really bad, well when I feel like death is imminent. They are terrible. My son and my sister do it too, and I know my sister doesn't have POTS, but I think Jake does. I find if I take in a big breath and hold it for several seconds, the tremors will let up for a few seconds, and as I continue to do it, they totally let up. I don't usually feel anxious with them, but I'm not certain it isn't anxiety from feeling so rotten. It's much worse than the normal tremors I usually always have. My legs will actually bounce up and down if resting on the balls of my feet. Which happens a lot, because I am so short. I have yet to see a neurologist who believes anything is wrong with me and I have done this for as long as I can remember, so figure it hasn't done too much damage yet, but it is very unsettling. I guess at this point I could care less about the drugs I take, if they help, but that is a very personal decision. There are so few that do help me, I'm not going to turn them down. I hope they find some answers for your cheeks, I have the same thing, only in my feet and not one person has listened to me on that one. Except Karyn on here. It feels like I am walking on hot coals, so I hope your cheeks aren't like that! Sorry I can't be of more help, I just always thought there was some genetic component to the shaking, as many of my family members also do it. morgan

My primary actually worries about both. I have a pacer now, so I guess it's not a big deal (we believe it was from damage caused by my ablation, NOT the POTS) but he has always felt that too much tachycardia certainly couldn't be good for you. he is not an expert, but I've always appreciated his concern in those regards. morgan

As far as I know nsaids are the only thing that really works for it, but as Pat says...food food food...I get pleurisy type pain, so that when I breathe in, it feels like someone has stuck an ice pick in my chest, so I can't get a breath in. Hurts like a booger, but usually clears on it's own. It is the sharpest pain, I just hate it. I told my cardio about it and he said, well that's too bad, see you in six months....morgan

Thanks everyone...I will keep you informed of what happens. Dan once said all he ever wanted was a doctor who understood me to call and tell him what to do for me. Now hopefully the booger meant it! I have started paralyzing again and it really weirds my heart out. We went for a ride on Sunday and Dave asked me if I was up to looking at an open house. That's our hobby, looking at things we can't ever have, to make us feel better... I said I thought so. There was a time I could go through houses all afternoon, but no more. We no sooner got into it when I knew I was in big trouble. I was already losing my speech, I turned to tell Dave to get me out of there, there were a lot of people, and he wasn't getting me, just standing in my way like a lummox. Finally, he said oh **** and helped me out. It had started to rain and he was basically dragging me to the car in his socks and had to go back and get his shoes, and then it was pouring rain. He took off around the block so people couldn't see. I had taken some meds out of my purse, but couldn't get my hand up to my mouth, and they fell out. So he pulls over to a curb and reclines me back, because sitting with this makes my heart go crazy and I can't breath very well. So there I am, limp as a rag, with the pills having fallen between my buttocks, only in the front, and he is digging there, trying to find them for me, and as my eyes are wandering aimlessly, I notice there's a guy in the yard of the curb he stopped at watching us. I can't make any expressions during these attacks, but I have to tell you that guy sure was. It flitted through my brain that the police were going to show up at any moment and then I wanted to burst out laughing, except I can't. Dave looks up and sees the guy seeing him and says that word again and I am silently busting a gut. It would be really nice to go in on the tenth and get something that prevents guys in their yards from thinking I am being violated at their curb by a frantic looking middle aged nerdy guy....... maybe you had to be there .....but yust use your imagination.....it was pretty funny, even then. Not the paralysis, everything surrounding it. It would just be nice to go to an open house and not wonder if I'm going to do a face plant show for people....so I will keep my fingers crossed. And maybe my legs morgan

Linda, I am so sorry, this is the story of my life, so I can certainly empathize, as can many. It sounds like you were taken care of by a hospitalist, and they have bosses too. I would find out who that is and let them know what happened. Unfortunately the only reason it might make a difference is because of money, but you have to go with whatever works. Even if it were a "psych" problem, which it is not, you deserved the same care as anyone regardless of who or what they are. I would state that in a letter and send it attention to who ever is in charge of this group. I actually got a letter of apology once. I know for certain this guy did not change his mind about me, but I do know he was disciplined for his behavior. And if nothing else, it either really made him mad or humiliated him or both. And sometimes revenge is all we can hope for. I keep hoping for that letter that says they found my mutant gene, so I can send it to a particular neuro and tell him to put it where the sun never shines. (Maybe that's why I haven't gotten it, do I really want to go to his level?) (Sometimes ) I am glad they did get your tachy under control and hopefully, at least physically< you are feeling better sweetie...morgan

Rachel, sorry about the horrid experience, been there done that more times than not! You can have reflux and not realize it. My husband just thought he had hunger pangs and when they scoped him, it looked like raw hamburger in there. He realizes now how much better he feels. I have been on prevacid for years, twice a day and still have reflux and gastritis to the point of getting those darn strictures. My son has reflux too, but he and I both really feel it. Maybe the doctor thought it could contribute to your fatigue in that, when you sleep and have reflux, it can go all the way up into your larnyx and you can have micro aspirations, which can wake you up, but not fully, so it interrupts your sleep. It makes you cough or choke. That's the only explanation of reflux causing fatigue I can come up with. If you wake up with a lot of sore or burning throat symptoms in the mornings that clear up after you are up, you may be refluxing. I read somewhere that over half of people with severe reflux don't realize they have it. I started on reglan...hated it...went to zantac and was up to 900 mgs a day, then went to prilosec and now have taken prevacid forever. I take 2 a day. Jake takes 2 nexium and then pepcid at bedtime, since you have different mechanisms at night working and the proton pump inhibitors (prevacid, etc) don't work as well as the histamine blockers (zantac and pepcid) and Dave takes prevacid too. We all feel much better on meds. That certainly doesn't excuse jerk doctors that blow you off, but then nothing excuses that does it? We do need acid for many reasons, but too much acid over years can cause major problems like Barrett's esophagus and stuff. And you don't want that. Good luck with whatever you decide sweetie! morgan