Sophia3

emily I wanted to clarify my use of DDAVP. I use it as needed and am not prescribed to take it 2xtimes daily even tho sometimes I do. I can also sometimes skip it all together on days I notice i am not emtyping my bladder too much. I am 48 and find my hormones fluctuate and add to the problem. So maybe because I have not taken it 24/7, I have not become 'desensitised' to it. Also my doc told me to check for swelling in the face and eyes which can be a sign I have taken too much DDAVP. On the other hand, fluctuation of female hormones can do the same thing!? So I just play it by ear but on average, probably take one pill a day but also may skip days. Oh, and on the days I need it I can tell cause when it wears off, I pee a lot until the next dose kicks in . Other times, I may pee a little bit much but NOTHING like I did before having access to DDAVP. having your body turn into a 'natural diuretic' is just as dangerous as taking too much DDAVP. So that is where enlightenment and beingn our own advocate for this drug can help. For the record, my endo never had me tested for Diabetes Insipidus because the water deprivation can be dangerous for me and the test is very convoluted, controversial and open to broad interpretation. He is an endocrinologist and has learned that over the years that often trial doses of DDAVP and just cut to the chase and help the pt...provided kidney problems have been ruled out and he checks my creatinine leves when I ask....probably once a year at this point but more often in the early years.

Ok, another two cents...whoever just posted that it is UNHEALTHY to dwell on our ANS 100% of the time, I TOO AGREE 1000% part of the nature of severe chronic illness is developing other interests and keeping ourselves distracted with FUN stuff or to kvetch with others about struggles like with disability or shopping or showering (or sponge bathing to save energy like I do) It's all the LITTLE things in life that many take for granted and does impact our illness. Like I have gradually tried to learn a bit about gardening. Even if I can only work for 3-5 minutes at a time...lie down 15 minutes and do some more. Did folks know what looking at pretty things such as flowers, helps to ELEVATE MOODS? proven scientific fact. Even a simply thing like posting about a site full of pretty pictures can be a mini-mental vacation for those of us too ill to travel. *sigh* I am afraid I have no clue what triggered this whole 'rule update' and hope somebody will spout off the EXACT specificities.... so we are all not forced to walk on eggshells for fear of offending somebody! This is kind of sad but I am glad i am not alone in my paranoia about what to post about here....or not post about.

Emily, if you are a 'noodge', then so am I. I am not sure exactly what the new rules are or the recent broken rule topics that made for an update of the rules. Am I making any sense? LOL. I admit I, too, LOVE the 'occassional' fun off topic subject like favorite music or movie, etc. BESIDES, as many of us are semi-housebound, TV and music is often what keeps us company and distracts us from the complexities and physical limitations of POTS. I don't see such posts so much as off topic but as 'coping mechanisms' of any chronic illness. I hope I offend nobody by responding to such posts in the past or by stating that sometimes OFF TOPIC stuff helps me....just speaking for myself of course. Thanks to all for this site and peace, Sophia

I have never been tested specifically due to this medicine. It was used for years in nasal form as a treatment in kids for bedwetting. This med has IMPROVED the quality of my life. I take it as needed but usually at least once a day....on bad days, two times. I get so worn out on days where I pee every 20-30 minutes and often forget I need to take this med. I listen to my body and can sometimes get a long with out it. I REALLY count on this med and what I take for sleep. BUT if I had to run out of one for a few days...it would be the sleep med. Eventually, I may fall asleep even if I am awak 24 hours straight (which used to happen ALL THE TIME) but you can't make the ADH in your body start working and dehydrating myself is no fun. I did a lot of homework on this med YEARS ago before asking my endocrinologist for it. Clinically it has helped immensely. I could lost 5 lbs of water weight a day before...and I don't need to lose any weight. Just my perspective. Though after all these years of this illness I RARELY check my BP, it's extrapolated that this med can help with BP and just RETAINING fluids helps me too. I use less chapstick when I take a dose of this med as I stay on the verge of dehydration w/o it and have for years. No matter how much I drink.

WOW! I had some idiot doc put me in the hospital a few years ago for tachycardia and some abnormal T wave stuff. But it was just my pots that was dx a few years later. The BIG problem I have read on ablations was that if they zap the wrong place, you can have bradycardia instead of tachycardia and really feel like ****. I have lots of pre-fainting warnings but if I went by what a cardiologist once told me, i could turn into a chronic fainter after an ablation. So I wouldn't go there but that is just me and I have read all information on this illness for years. Good luck in doing your homework and making an INFORMED decision.

So glad to hear of your getting out and about, Ernie! That must be a great feeling. For years, the actress Anna Lee on Gen Hospital was in a wheelchair. THEN in later years, I noticed she had a reclining one with her feet forward and raised a bit and her back reclined. Now that must cost a fortune. Not to mention the space issue but it would be great if they loaned those out at the grocery stores!! But it would NEVER fit in my tiny house....but nice to know they make the reclining type. I am glad you benefit from the sitting kind. Enjoy your new found freedom. Do you put it in the car to travel or do you use mass transit?

make sure your daughter isn't developing a "dry socket". This is a common occurence and VERY PAINFUL!!! I had this 30 years ago when I had my wisdom teeth removed. THIS is not HELPED by pain meds but you need to see the surgeon to check the socket for medicine in the area. Please call your surgeon about this. Good luck!!! poor thing. Make sure she reads her after care sheet as it should mention the dry socket problem. do keep us posted on her situation. Please read about Dry socket on this site...just scroll down the page a bit but PLEASE!! Call your doctor before the weekend....this could easily be her problem. I followed ALL THE RULES and didn't EVER smoke and still got a dry socket as did friends of mine. http://www.animated-teeth.com/tooth_extrac...ons_post-op.htm

Here is some info on the program. It is strictly voluntary. http://www.ssa.gov/pubs/10061.html#part1 If you are truly disabled and your doctor backs you, they can't hold your lack of participation against you. Most people are reviewed every one to three years, or three to five years, or five to seven years. It depends on if your disability if MINE (Medical improvement not expected) or temporary. The review system is getting more complicated and oppressive, paperwork wise. Last summer I got the short CDR..followed by nothing for seven months at which time i got the long form CDR forms(continuing disability review) THEN a month after, that a VERY LONG, exhaustive FUNCTION report and disability form. In fifteen years and three reviews, this was the most DEPRESSING ever as they asked questions like "what were your hobbies and lifestyle like prior to illness? and "What are they like now?" ONLY they wanted details of why I could not do said hobbies/work/social life anymore. For those of us that can ONLY THINK in the moment/day, it was a real head trip over the MAJOR IMPACT of a disability. I hate dwelling in self pity and what I can no longer do (sing, ride horses, travel, etc) I think it is CRIMINAL the questions asked but one has to answer them. Anyway, whatever your review when you face it, you just can't take it personally. It's meant to be a pain.

do NOT be afraid of the label CFS and FM. GOOD DOCTORS KNOW they exist but good doctors ALSO PROPERLY dx each. I had CFS dx for YEARS then the pain of FM. BOTH WERE LEGIT. Immunologists and rheumatologist confirmed the dx. Don't be afraid if you have those lables when they are used correctly. Here are some articles on FM and I was part of the study on GHB by Martin Scharf listed on the sites. It didn't help my alpha delta problems tho but I was grateful to have the study done for months. We NOW KNOW my CFS and horrendous exhaustion is from my POTS. http://www.medscape.com/viewarticle/459329_print http://www.immunesupport.com/library/showa...e/1/T/CFIDS_FM/

Gosh, my swiss cheese brain needs to think about this one...I love so much music. How about a few of my favorite songs (plural) Beethoven's Pastoral Symphony (conductor and arrangement from Disney's Fantasia) Most any happy music by Mozart Smetna's the Moldau Waltz in A Flat by Brahms Sheep May Safely Graze by Bach Long May You Run by Neil Young Into the Mystic by Van Morrison Evening Sun Goes Down by Van Morrison That's the Way that the world goes Round by John Prine Till my Dreams Come True by Gershwin...in Marx Brothers movie "Cocoanuts" 1929 Don't Think Twice It's Alright by Bob Dylan If You wanna be Happy for the Rest of your Life (Forget the singer, from the late 50's or early 60's) Used at the end of Mermaids movie with Cher) Great song and I wish I had a copy Ashokan Farewell from Civil War documentary Rainbow Sleeves (written by Tom Waits) Performed by Rickie Lee Jones on Girl at her Volcano album Under the Boardwalk by Rickie Lee, Jimmy Buffett or the Drifters There is NO WAY I could pick just ONE song...I have too many moods!! gee, ya think.

Julie, My, you have your hands full with worries about your nephew and now your mother. I hope things go ok for her. I am very tired and not sure I followed your post. Does your nephew have a female and a male doctor? I take it the two docs didn't know what the OTHER HAD GIVEN your nephew? This is good that is was DISCOVERED but very bad the lack of knowledge about this...THANK GOODNESS YOU GOT INVOLVED and one of the doctors does not like the protocol either. I hope I interpreted the above correctly but I have had a long day and my cognition isn't terrific. But again, I am glad you went to the doctor to hear things with your own two ears as it EASILY makes the issue YOUR BUSINESS! as far as saying things to the mother via whomever. So I will be curious how things pan out and I hope your little nephew gets his appetite back since you said he was a skinny kid to begin with..... Good luck with the situation with your mom. Positive thoughts and generic prayers to you and yours in the Toledo area. P.S. I would like to know in what amount of time the shrink "determined" your nephew has ADD.

I have awakened hungover even before doing sleep meds due to very insufficient sleep...I have alpha-delta disorder and get little refreshing sleep. First ANY ANTIHISTAMINE will not only make you feel hungover but mess up your sleep cycles. Klonopin has worked for me for about 15 years, most of the time. I have not built up a tolerance. Some freak ADDICTIVE DRUG but there are just 'addictive people'. I have had no problems and sometimes in rare moments can fall asleep on my own. But trazodone and other tricylic antidepressants can cause sleep problems AND cause orthostatic problems worsening OH and other autonomic stuff. So that could explain not only morning groggieness, but ALL DAY TIREDNESS and cotton mouth....Also weight gain since they tend to make you crave carbs. I was told the above by a sleep doc years ago.

Julia i am totally outraged about this situation the more I think about it. I am sure you saw my post at NDRf. I really do find it criminal what is being DONE to this poor little kid. Way too many meds. His HR must be unreal and the fact that he has personality changes?!?!? HELLO! Poor little guy. I re-iterate the ADD adhd DOES exist but is way over diagnosed, exaggerated and over medicated. It's very sad what is being down to this little 7 year old with no voice of his own. The doctor should be horse whipped to dope a little boy so much....His mother needs a SERIOUS WAKE UP CALL. She has faith in the doctor? Well, many folks have faith in snake charmers and quack healers...but at the expense of an innocent child. It's not right. He sounds like he has a lot going on with the divorce and all but so much stuff in a kids body....NEEDS another medical opinion from a GOOD M.D. AND psychiatrist FAMILIAR with ADHD and not just a pill pusher. Keep us posted.

War eagle...I just found out the glue traps are the oNLY ACCEPTABLE traps with pets in the house, used by PROFESSIONALS?!?!? but I don't want to deal with those. You can hear the mice screaming and squeaking and they bite their legs off to escape. I don't know why they won't use SNAP TRAPS if they are undersink cabinets, fridge and over where cats can't get? So I dunno...will have them come out to see how bad the infestation is...I would rather try catch and release or worst case, the snap traps. Gosh, you would think pros would have a more humane way of killing them.....I am most disappointed but GLAD they are not stupid enough to RISK bait in houses with pets. Thanks

Bummer...Professionals ONLY USE THE SLOW DEATH GLUE TRAPS in homes with pets!! Heck, I would think they could use the quick snap traps under stoves and sinks away from pets? and in the attic. This is a real bummer. i am glad they don't use bait around pets but you think they could use electronic gizmos or SOMETHING. This stinks.

thanks Merrill, I have to wait for the exterminators to call back...their inspectors are VERY BUSY with this being termite season..so it could be a few days (yikes) before they get here. This Saturday a friend is coming over to help seal some cracks in ceiling between garage and the house..and anything else we find. so we are doing the no brainer first. My "catch and release" deal from FL may not arrive until MONDAY so I hate to kill but hey, my 84 year old mother is phobic and afraid to be in her kitchen and so am I. My cats are darned curious and hanging in kitchen so I do NOT WANT to take a chance...so if they want to try bait for aweek and come back to check, the cats and I will leave. Also, I have read and heard peanut butter is the top fave snack. I put some on a toothpick and into the 'live catch thing" that the mice escaped from and within 30 minutes, two mice snacking. This was under the kitchen sink which shares a wall with attached garage. So the fact the mice are VERY BUSY in the kitchen, that is an obvious place to set traps or whatever. If they will set traps inside and bait the attic and garage, I will still leave for a few days until we see what is happening. Thanks for your input. Yes, this is all distressing and sad tho it needs to be done. I really miss having a husband or beau thru this. I have one friend that lives 20 minutes from here but he isn't wild about mice or killing them either. *Sheesh* So now I have to be patient...this exterminator has an alleged good reputation adn we know NOTHING about others listed in the phone book.

I didn't mean to sound upset in my post (I am about mice, NOT YOU!) I meant to post whatever I wrote to everybody on here...sorry if I sent you a private deal...I did not mean to nor was I singling you out for anything you said. But the glue traps are just TOO CRUEL for me to use..hence professionals for painless or quick demise. !!!

Hey I tried to reply to this post and must have sent a private message...Didn't mean to...I reworded my ORIGINAL POST to ask about PROFESSIONAL BAIT SYSTEMS...not do it yourself. Thanks

Ok, I usually allow no chemicals and was going to try and get rid of mice in "live catch and release deal." well, the doors didn't trip shut and the mice ran in for snacks and kept going. I have seen TWO MICE at the same time in the trap under kitchen sink(eating peanut butter before escaping) and heard them in far other parts of the house in the ceilings!!! i have heard they can live for years in attics above ceilings but only come into living quarters when overpopulated. So, I am calling Scherzinger first thing tomorrow for estimates since they treated our home decades ago for termites (had no pets then) Has anybody here had to use the bait program by PROFESSIONAL EXTERMINATORS for mice with pets in house? OBVIOUSLY that is better than the spraying systems they used to use but I worry about a stray mouse getting to cats and cats maybe ingesting mouse AND the poison. I have heard they rarely spray even in cockroach situations but I am still worried about where the bait will be (under stove! under fridge, under kitchen sinks and mice may stray out) I do have a freind who I can stay with for awhile with my cats. Would I have to stay gone long or does it depend on the severity of infestation? we are clean folks and have NEVER had mice before...except maybe one when I was a kid and there was still farmland a couple blocks away. Am I over-reacting?. It is tough to close cats up in a couple rooms when they are used to run of the house w/o my losing sleep but of COURSE their safety is number one. I will call my vet tomorrow but just wanted some feedback here. Thanks

Glad you guys found it helpful. Its amazing what you stumble onto when looking for something else on the net! LOL

kathleen, Wow! i can't even begin to wonder how this has made you feel. I am sorry to have your doctor betray your trust and hurt you this way. But this paper you got, what exactly was the paper that said Munchausen Syndrome? why was this given to you? This is something docs usually write down but then approach the patient about. I would be MOST upset to have this on my record to possibly follow you around. Is there ANY WAY you could have the courage to confront the doctor about this either in person or email or snail mail? By confront I mean in a civil controlled manner--- and that would be no easy feat, I know. But this is very disturbing if he has been this supportive until now. I would want to know WHY he said this. Please send a letter and send it registered letter to ask for an explanation. You have a right to have ANY diagnosis given to you to be explained to you. I know this is too much for you to try and accomplish now, but please consider this. Still go ahead and get another doctor but I would NOT ask for the records from this jerk doc since this is in your file. And I would want to know why I was given this Munchausen syndrome dx. Be kind to yourself in the next few days and let us know if you decide to ask him.

Go for comfort more than budget if you can!! You need a clean room and ask for the quietest room (not close to elevator or stairs, not next to ice machine!) Also, if you don't get the prices listed here for a quote at mayo clinic, try calling the hotel directly on the long distance phone. Often the prices vary from 800 to direct numbers. And of course mention AAA and mayo like suggested. Best of luck and I hope you get a nice place. I hear you about being sensitive to smells and odors and they can set off symtpoms. I think I was a dog in another life with my terrific sense of smell. I smell things long before other people do. Same with hearing noises! Get foam earplugs and a small radio if you can to mask room noise if walls are thin. Best of luck with your visit.

Interesting article with some of the best quality of life issues addressed in one article. Would be great if she gave more specificities but still, a great sheet to keep on hand for those newly dx with CFS or who suspect they have it. http://www.co-cure.org/Understanding%20Chr...%20Syndrome.htm

CLARIFICATION: Research for treating the illness is not useless. but to TOTALLY lack compassion and play "stupid" that they can't determine who is disabled and who isn't, IS USELESS. It is TOTALLY POSSIBLE to have written NUMEROUS ASPECTS of the DISABLING DEGREES of ANS problems w/o pretending and insinuating, DISABILITY doesn't exist. You can say, "hey, I can't get involved personally cause i research too many patients and dont see them regularly but show my papers to your doctors to help EXLAIN the affects of this illness that it INDEED can be quality of life ALTERING. THAT WAS MY POINT. If the ANS EXPERTS aren't even willing to share articles about bedridden pts, patients who consider suicide and are wheelchair bound, etc, how is the Social Security administration supposed to EVER think ANS is anything more than ANXIETY? Sure there are subset categories on which to apply and it's the limitations not the dx and label. Still, it is mind boggling that they REFUSE TO GET INVOLVED. I totally understand a doc not wanting to if he isn't the attending, treating physician. But if one sees an ANS "specialist" 3 times a year and he implies "why can't you work?, does anybody have a clue how that would make a patient feel? Morgan got my point. BESIDES, tilt table tests should be ALLOWED to be used for evidence since they are clinical proof of our problem with gravity. Ok, off the soapbox. I am way too tired to continue this rant. But my friend who I have spoken with on the phone and in email, refreshed my memory last night that her G.I. doc had to help with ANS issues, and it made me mad all over again!! So I have officially closed my mouth on this subject. But as far as the ego of the ANS docs with all their own "separate theories and speculation" they need to realize it's the squeaky wheel that gets the grease but the wheels that role together actually get somewhere. In other words, they could certainly write a team effort report to enlighten the Soc Sec system!! Peace

Mom to G, I know after hearing DIRECTLY in email from a friend who can't get one of the most famous ANS researchers to help in her recent disability situation, I was livid. Sure, these guys are busy and can't be everybody's attending doc, blah,blah, blah. But to BLATANTLY talk about the disabling aspects of this condition on one hand, and then to tell pts to their face "How do I KNOW YOU ARE DISABLED?" on the other, sorry. I ain't buying it. It's not right. It's insulting. I have DECIDED I DO TAKE IT PERSONALLY. What good is studying a poorly misunderstood illness that is often mistaken for anxiety, if docs turn around by ADDING to the anxiety by questioning ones daily limitations, and therefore, one's disability qualifications? It boggles the mind when you think about i.