morgan617

Ernie, since you and I have had many of the same symptoms, that most of the others don't share (periodic paralysis for one) and require massive doses of potassium, I am always interested in the testing and research stuff you do. If they can unlock the mysteries in you, maybe there will be some light for me. You know the struggle I have to get any help what so ever, so I live vicariously through what you learn. I would be a guinea pig, it's just that no one wants me . So I have to depend on you. I have a question. Since you have been on really high doses of K+, like me, has your BP dropped at all? Mine was 80/44 yesterday. ugho, that's lower than my diastloic usually ever is, but I have noticed the higher the dose of K+, the lower my bp goes. You are special to everyone here, I guess we are all just having some really off days. Pat, I'm glad it wasn't just me, I thought I was hallucinating or something!!! morgan

My son has been on lexapro, but not for very long. He doesn't report anything like that, but anything is possible. If he misses a single dose though, he feels awful, which I don't like.....morgan

Sorry ernie, at the time it came up, I was having problems with the site and didn't realize it was a new post. hard to explain. I never look at the number of posts, just the title and sometimes flip through to see if anything new has happened, but my life has caused me no end of grief lately and I've been sucking my thumb, sulking in the corner, so sorry I missed it! Hugs and sorries....morgan

Melissa, really you crack me up! The pathetic thing here is, I was a nurse forever and it never bothered me to clean up people, I knew it was really embarrassing for them, but as a nurse, it was like giving a back rub or something. You know, not gross or anything. I always tried to let people know ( I can remember one man in particular, who actually coded and we got him back and he was more embarrassed that he'd wet himself than that he'd almost died, so I did everything to protect that from all the people in the room) Then it happens to me and it's the fricken end of the world. What a hypocrite. I certainly don't do it on purpose, but I swear, I can be barfing my head off so hard the neighbors can hear and Dave is blissfully sleeping away, and just let me pee the bed and he's awake, asking what's going on???? I haven't been to a gyn in over a year tearose, but have never had a cystocele before. Since I have so much control during the day, I don't think it's related to that and my diet hasn't changed at all. It's as boring and bland as you can get. It just bothers me that I have just emptied my bladder and then it's just running down my legs while washing my hands, it's like..whutt the???? I mean, no feeling of having to go, or that I have even leaked, it's just there. I do hear you Missy...Of the two, I guess I'm glad it's number one, but did have a bit of a slip with number two also, so am wondering how far behind that is...get it??? behind...hehhehheh. Right now I am using big old maternity type pads, not used to all that chafing, as I had a hyst in 86 and haven't used them for a long time. I'm with you Missy girl, they could at least put a princess on the butt or something. You are right, of course, sometimes you have to laugh, just so you won't cry your eyes out......morgan (I'll look into the site tearose, thanks)

Mary, No infection, I've only had one in my life, and blood poured out then. No symptoms at all of infection....but thanks guys...morgan

Just thought I'd get it out of the way before we even get started. I have been in a pretty steady decline over the last year. Not posting so much and stuff. I have a lot of trouble with vision and perception and it's difficult. My balance has become very scary, cognitive stuff horrid. My BP has gone from very very high to so low, I can barely function, and now I have started peeing the bed. I'm not talking about a cough and a bit of stress incontinence here. I'm talking about waking up, with urine pouring out of my bladder. I typically have major problems getting my bladder emptied, stopping and starting like some old poop with a 10 times it's normal sized prostate, and now I'm worse than my 3 year old grand daughter. I guess it's a good thing I have no deep sleep or I'd flood us out of the bed, as I wake up in the middle of it. Just when I think it can't get anymore humiliating.....I am really starting to look at Shy Drager here, but am guessing until I drop dead, no one else will. I've already got the pacer, and every other symptom. The only person that knows this is my husband, and now of course, a million people I've never met, but good criminy, do we ever run out of symptoms??? At least during the day, I don't pee myself yet, but my frequency has been so bad, we've had to stop so I can go on the side of the road, because I can't hold it. Then it's a stop and start. And it's after I go that I'm incontinent, not when my bladder is full, except when I'm asleep. It's all backwards. I am just so tired. After my sleep study disaster, I will keep this to myself, except for the entire internet world of dinet. I just needed to vent. I seem to need that more and more, as my body fails more and more and while doctors go, oh well, whadda ya want me to do about it, it's NORMAL.....sigh...sorry wetwillymorgan

I use to have something somewhat similar to this, that I called surges, but they would just happen out of the blue. I had no sense of doom or panic, I could just feel my BP going up really fast and a feeling that's very hard to describe. I would get tremors, and this very full feeling in my throat, probably related to the rapid rise of my bp. The atenolol has helped with these , although I still get them. My bp has gone in the totally opposite direction and is way too low now. But I do remember they would last for an hour or so and then I would get flushed and they would dissipate. I have absolutely no idea what these things are. I called them surges, because that's what they felt like. A surge of something going on in my body. I have to say they were the worst part of my illness and I still dislike them as intensley as I did when they happened all the time. I was tested for all kinds of things, but the protocols for specific testing are not in place where I live, so I have no idea if they are even correct. My ACTH or cort stim was off 2 times and the third time, all the numbers were off, but elevated when given the ACTH, so they called it normal. I'm not sure how to help you, I just ride them out, as miserable as they are, but I don't have small children, so have it easier than you do. It is all just chalked up to anxiety, or POTS for me, so I have to deal with them. That doesn't help I know, and I hope you can get into someone sooner than later. Have you had an MRI of your head? Or your adrenals? Even if you can't into a neuro for awhile, that might answer some of the questions about what's going on. You could rule out pituitary or adrenal problems. Or find out there is a problem and get in sooner. Good luck sweetie...morgan

Dawn, ROFL, My mom said it was okay for her to smoke after 3 open hearts, because she had the lungs of "an 18 year old" I always said, yeah mom, 18 year old lungs and a 100 year old heart....but bless her heart, she did love her cigs and after the third surgery, we never discussed it again. I guess I figured at that point it was a moot point, and we had other things to talk about. But 3-4 breaths a minute, good grief. If you were on a cardiac floor they'd be intubating you girl! I breathe faster, but it's very shallow, and anytime I have a procedure with sedation, my sats drop into the low 80's. morgan p.s. I get light headed just from having them listen to my lungs, because they make you take those big deep breaths.

Amazing how being told we are sick can be so joyful in a perverse way. Sometimes it's just all about validation, sweetie! morgan

Maxine, I don't really understand EDS at all. So, no clue how the change in type matters, or what a difference it makes in outcomes, etc. Sorry. I bring up my PP here sometimes and know others don't get it at all, and that's how I am with EDS. AS far as all the gut problems, you do NOT have to have diarrhea when you have crohn's. Or colitis. A lot depends on which part of the gut is involved. Mine is distal, or lower in the gut, so I don't have a lot of diarrhea, till lately anyway. It's a misconception that all people with inflammatory bowel disease must have copius diarrhea. The treatments for both are pretty much the same until it gets really severe. Remicade is used quite a bit now, but typically as a last resort before surgery. The oral meds for IBD are pretty benign, as far as side effects go, until you get into steroids and things. I've seen them remove diverticulum from people, but know you are a risky surgery. I guess it depends on which is riskier for you. Having them take over your entire gut, or taking some portions out. I'm glad the study went well and you did okay. It sounds like it was a very positive experience. Sometimes I think that even if I didn't learn anything, it would just be nice to be treated with compassion! morgan

Get your primary on board with this also! If he/she is resistant, it won't help you. And remember, patience is a virtue... good luck sweetie! morgan

I really think I am just much worse at certain times of the year. Spring, and late fall into winter, but I can't say why. If mine was related to just stress, I'd be in bed and never get out. Last year was bad and this one has started out awful. I do really well through the strss, it's after that I collapse. Really, I'm not sure I've had a rhyme or reason to mine...but I muse about it a lot...actually I tend to sulk about it..LOL morgan

My hubs does everything but type for me, sorry. Just be patient and someone on here will tell you, sweetie...morgan

I'm sorry I don't know anything about it. My guess is, since it didn't give the doctor anything specific, it's like an ana or a sed rate. It says something is wrong somewhere, but is not a specific test, so if everything else comes back"okay" they are not sure what to do about it. That would be my best completely uneducated guess, sorry sweetie, wish i could be more help! morgan

I had one 2005, but it was inpatient. The worst part was the neurologist (sorry, but true) but I spent 3-4 days with the guiness book of dandruff stuff coming off my head, no matter how much I washed it. Be prepared sweetie...morgan

Tea rose, my primary is in with a sleep specialist, I mean his partner is a sleep specialist, he's Jake's doctor for that. He could walk over and ask him about it for nothing, but I know he won't, as he refused to order a study in the first place. The only way I can get a second opinion is with a referral and someone has to order it for me. My ear nose and throat ordered this one against Dan's wishes, so I don't want to push it, by asking him to do it. I have to fight all day not to nap. Within an hour of being up, all I can think about is going back to bed. It's horrible. And sometimes I sit down to watch a show or something and wake up 3 HOURS later, then an hour later, I'm ready to sleep again. Late afternoon is my very worst time. I fight it, so I can try and sleep at night, but it really doesn't seem to matter. A bit of a kicker here, my friend asked me why it bothers me that it says what it does. I said, if no other reason it validates that I have a problem, and her response was..so??? That is the difference between people who have health problems and have never been mistreated and those of us that are never believed, and the sad thing is, she will never get it. morgan

Dawn, how can anyone go 41 seconds without breathing and not drop their sats!!!!! Jake puts his on every night and it's off every morning, he has no idea when he removes it...very frustrating to him also...morgan

My sats did drop below 90% on the apnea, but I apparently don't meet the classic requirement for the number of times. They were all in REM, which was way below the normal I should have had too. It was for the whole night Ernie, but I was in rem for only 22 minutes the whole night which would come out to one every couple of minutes. I mean, there wasn't one single normal results and yet that's what the summary says. Thanks, Nina for adding it up in a more understandable way! Jake asked me if I wnated to try his cpap, just to see if I slept better, but the major problems seem to be in my sleep patterns, not apnea. Ernie, He won't give me anything to help me sleep, I have asked, because I've told him I am so exhausted, but just don't feel I sleep well. I just needed to vent. people wonder why I never get anywhere when I am trying to get help, and it's because I have a completely abnormal sleep study written up as normal. I compared it to my son's and his patterns are off too, but he does have more apneic periods than me, although his sats never fell any lower than mine (upper 80's) he had more episodes. He also has problems with stage 3 and 4 sleep, which could make this a genetic thing. Who knows. It just boggles the mind doesn't it??? Just as an fyi, it was a neuro-psychiatrist doing the study....I have never had one single positive experience with a neuro, I swear and then he's got a psych degree too, I was dead in the water from the onset, I guess. I haven't heard of what you are talking about dsd, but the links would be great! thanks. morgan

Hi Ernie, It's the same kind of sleep I feel I get every night and I am completely exhausted all day. The problem here is, there are abnormalities that none of my doctors will look at, because all they will do is read the "impression." I had to fight tooth and nail to get this study. It would have been much nicer if he had written mild sleep apnea, but everything else is way off, as opposed to everything being normal. Or given the norms and my numbers, so they could have seen the discrepencies. Only a sleep doctor will understand the numbers, I only know they are off from looking up several sites and verifying the numbers are all the same. It also did say I had 42 arousal/awakenings in the time period of sleep. I don't know, but waking up 42 times in 5 hours seems like not a whole lotta quality sleep to me...... I suppose for the disorders I have, it would require meds as opposed to bipap, which I wouldn't be able to do, but it would have at least validated my complete and utter exhaustion all the time. I'm starting to feel like a narcoleptic, it's getting so bad. I don't even realize I'm going to sleep, till I've woken up feeling like crap. You would think they would take into account that a very compromised person might benefit from something, that a person with no other problems might not. It's back to parameters and those parameters being ignored, but we are not talking about tiny abnormalities here. Some of the discrepencies are pretty big. Just another discouraging day at the office.....morgan

Well, as some of you know, I had a sleep study and got a call that although I didn't have sleep apnea, I have sleep apnea. Yes, that is not a typo, it was a verbal over the phone from Lord knows who. Here is what the report says. My numbers are the left side and n=normal Stage 1 sleep (the lightest) 59 minutes, 19.6% n=5% Stage 2 sleep 216.5 minutes 72.5% n=45% Stage 3 (deep) 2 minutes 0.7% n=12% Stage 4 (deepest) 0 never happened the entire night n=13% REM 22 minutes 7.4% n= 20-25% 10 respiratory events....all obstructive apnea 5 hypopneas majority of events in REM sleep IMPRESSION: NORMAL polysonogram with no evidence of sleep apnea syndrome. Only in my world is abnormal completely normal, sweeties......Ineedanapmorgan

Ya, my ANA has never been normal. A rheumy once told me a lot of people walk around with a very low grade lupus that never gets worse and never gets better. That would be me......an only slightly off morgan

Lina, I have that problem in my feet! They feel like they are frozen and sometimes look like white dead fish. Then they turn maroon and burn like fire. Doesn't seem to matter whether it's cold or not, although cold sure doesn't help much. My hands get cold, but have more of a tendency to just get really clammy. it's pretty gross. morgan

Welcome Danielle! Glad you got a good doctor, but sorry you have the illness! I hope you find this site to be helpful and feel very comfortable here! morgan

ks, sorry you are feeling so punk. Hopefully as you heal, you will start feeling better. You did just have some major surgery here and that takes awhile to recover from, when you are healthy to begin with. I am keeping you in my thoughts and hoping each day gets better! morgan

There is a loss of consciousness as a rule, with seizures. Or a lack of awareness of what's happening. Even with Petite mals, itty bitty seizures, where all you do is stare and go blank for 10 seconds, people don't realize they have gone blank, even for a few seconds. I would guess this is some kind of sleep thing, because people can't stop seizures either. Well, or some new great POTS symptom. Oh boy, just when you get used to the ones you have..... I had an inpatient eeg that lasted about 24 hours or so. I have periodic paralysis, and go completely limp, I can't stop it no matter how hard I try. I also feel like I'm going to be incontinent, but the feeling goes away as soon as I go limp, then I pee a gallon after the event is over. Typically with seizures if you feel like you have to go, you will. I have had episodes where I get really bad tremors too. My eeg was normal, which I knew it would be, because I am aware of everything when these episodes happen. So I knew it wasn't seizures. and the results did not suprise me at all. The doctor's attitude horrified me however, so be prepared. Since you have apparently had a sleep study, and you are getting CPAP, did they notice anything besides apnea? Do you have your report? I do hope they do figure out what's going on. Many times, even when people do have seizures, it's idiopathic and they never do figure out what the problem is. It can be as frustrating as OI. By the way, after this eeg, your scalp will "snow" for days, so be prepared for that too. No matter how much you wash your hair, you will have the guiness book of dandruff for at least 3 days. The goop they use for the electrodes is horrid, it doesn't itch or anything, but it's a real pain. For the inpatient eeg, they don't try to induce anything, but they watch every single move you make and have a microphone to recored everything, like a sleep study. You are also on a heart monitor. So it's kind of the same concept as a sleep study, except with a zillion more electrodes on your head. Good luck! morgan