Sophia3

P.S. I do not currently take beta blockers but before I did, when I tried them and afterwards, I STILL WAS COTTON mouth and thirsty a lot...and had chapped lips. Just wanted to clarify since I didn't answer your questions. I take NO MED to cause dry mouth, either.

For years I drank out of a good sized water bottle. FINALLY after urinating my brains out some days and losing 5 lbs and feeling dreadful by bedtime, i started reading about DDAVP. I asked my endocrinologist about it and he gave me samples. So I am obviously ones that are intermittently low on the ADH (Anti diuretic hormone) It matters NOT how much fluids I drank or how much salt I ate, the fluids went right through me. DDAVP has been used for years in kids with bedwetting problems and is considered safe. I take once or twice a day as needed. I even use LESS CHAPSTICK while taking it so I do stay on the verge of dehydration at times with my POTS. The test for diabetes insipidus (not sugar but another type of diabetes) is very tough and possibley risky to test for or to go thru the test. I didn't get rid of over a gallon of water a day like some people (at least not the times I had urine monitored) but I lost enough electrolytes to make myself feel rottn. So while I do not have D.I. per say, many with POTS mimic the illness and benefit greatly with DDAVP. But you have to do your homework to know about the risks/benefit ratio of the med (or any med) and have a doctor familiar with it. In my case the samples worked and it helped immensely. I get the meds from the drug company now because it is expensive. Hope this helps.

Emily, Thanks for posting about that blogging site! I tried this years ago at another site that had horrid graphics and articles by major depressed, dysfunctional people! The one you put a link to is nice. Though I am clueless how to redo my name and insert a photo. When I put in a photo, it went in the article! LOL so I removed it. I write letters to the editors and rant and rave (ok mostly rant) about many things close to my heart from the major to the minutia. So I have my own blogger spot. Feel free to read and if you can give me a clue as to how to post my photo NEXT to my name, I would gladly take tips. I spent an hour earlier and could not figure it out and started last evening. Oh, well. Thanks again for sharing this as an idea. http://rantsandravesami.blogspot.com/

thanks again for the replies....I am JUST NOW starting to bounce back...after the get together after the funeral on saturday and hanging out all Saturday evening with the family...Sunday I was TOTALLY WIPED OUT and on Monday I also woke up with that terrible, groggy, out of it feeling....finally was able to get out of the house today for a bit...and went down to have dinner with family members still in town. This stuff STINKS but there is no easy way for any of us...and I CERTAINLY haven't been holding back the tears.....but better composure today finally. I appreciate all who responded with remarks about the crying and fatigue. My sister who is a healthy massage therapist had a few clients yesterday but canceled today and tomorrow. She really can't afford to do this but just HAD TO to get some rest so she is really mentally/physically zapped as well....so kind of nice to know it isn't just me. Course I am always super fatigued but some of you semi housebound know what I mean! I even made a new chocolate cake recipe yesterday!! FATTENING and it called for buttermilk. But I made a sheet cake instead of a layer cake so it was a low energy deal and I sat on a barstool to make it and the frosting. Would share a piece with all of you if I could!

Julie I am so glad Dr.G is going to try and get some answers for you. Also, look forward to hearing your update with Dr. H. good luck with both and take care Sophia

thanks to all who chose to respond...i appreciate your kind words and things contiinue to be most difficult for all...tho the love and support of the siblings to each other and to others, espcially their aunt (fathers sister) amidst it all impresses me endlessly. Great kids. And the aunt and her kids have taken WONDERFUL care of my sisters grown kids...feeding them, cooking for them, taking them to the funeral home and allowing THEM to make ALL the decisions...after viewng the musical montage of photos and videos my nephew put together on their father, they honored their cousins and their aunt with a beautiful sepia toned photo of their father dressed in tuxedo and playing a piano in a Big band job he let at his son's wedding...I am not making since but it was all amazing...we had just seen the job on video and they put a copy in silver frames for all. but we all know that tough days are still ahead. fyi, I also have problems with laughter or too much talking but the out and out SOBBING as opposed to gentle crying is exhausting. Emily, thanks for acknowledging what I have been thru the last few months. It's been an INCREDIBLE challenge and my mom has been too weak and taken to her bed to be part of this deal with my brother in law. She loved him greatly but sadly, can't deal with her pain and just takes to her bed...neighbors are looking in on her and I am choosing to stay away and not even call until she calls me. I need to deal with my own grief. thanks again.

I lost my brother in law of 41 years this week. He had had a heart transplant 9 years ago and was having problems the last couple of years..and especially the last couple of months...He and my sister were divorced but we still saw him on holidays and family get togethers. I have known him since I was 8. This has hit us all TERRIBLY hard and I am not handling it well...the endless crying jags --in between normalcy and laughter and sharing--has WIPED ME OUT. i was so bad at last night's visitation, I could NOT do the Catholic Mass this morning which my sister totally understood...I would rather be with the family this afternoon. But WhAT IS IS about crying that makes us so ill? Is it because crying, sobbing and even wailing and blowing our noses, fighting back the tears and then giving in is like some form of the valsalva maneuver??? This is wiping me out more than the death of my father in 1990 before my POTS got so bad. Just wondered if any others noticed this when in deep stages of grief...I just wonder what the breathing pattern of despair does to our bodies. Thanks for any feed back. P.S. The visitation was beautiful...photos of his life of 64 years everywhere...retired physician/surgeon and his kids played tapes of his Big Band in the background...he was a musician his entire life and wrote arrangements ....so we are celebrating his life but it's STILL HEARTBREAKING and my neice is taking it especially hard the loss of her dad...and her 3 brothers are being WONDERFUL..Tough on my sister even tho they have been divorced..I am stunned by the overwhelmness of it all...once three of the children and their spouses fly back home, it will get even sadder....

Jan ..I guess you both are putting one foot in front of the other to get on with the treatment....You must be overwhelmed by the illness and the challenges.. I am sending thoughts and prayers to you, Jeff and other loved ones in Michigan. Your puzzles sound marvelous and hopefully will give you something to think about in between all the other hurdles you have to face. Sophia

Jan So sorry to hear of this devastating news! My late father had this many years ago before the advances of surgical options were available. I even heard a story of a baby being BORN without one and after a year or so, the doctors "constructed one" for this kid and now he is a teenager! I was happy to hear the option Nina posted about. I will certainly sent positive thoughts and generic prayers to you and your husband and loved one at this MOST difficult time.

The exercise dichotomy for ME anyway. If I do regular exercise (weights on my lower body and some walking) that can worsen my insomnia though on other days I don't exercise, it's just as bad. Other times, exercise like gentle walking "appear to help" OR is it coincidence? BUT if I over do things, it can trigger fatigue and a late day nap or an early sleep for the night, In other words, in MY CASE, there is NO RHYME or reason to the insomnia that is always there except some things worsen it....exercise, PMS, my period, etc. BUT this week, in this NASTY OHIO humid weather, I was thrilled to be able to plant 3 hosta plants and another plant, in the shade. before noon. I took many breaks to do this and drank Gatorade in a glass full of ice, and wore my abdominal support and as little clothes as possible. I also had to take a pick ax to pull out roots from an old Wintercreeper plant!! VERY EXHAUSTING. I would come in to A/C house (set at 80 degrees) lie down with feet over head and relax for 10 minutes or more and work another 5-10 minutes outside. Well, I WAS THRILLED to get this major accomplishment for me (it's mid cycle so I can sometimes PUSH myself this time of month) but then that night, I fell asleep early (midnight!) but the next day, I started getting really sore in the shoulders and achy all over. That night, my sister drove me to pick up some ornamental grasses from a friends garden (Her garden is magazine worthy with HUGE plants and trees and grasses and flowers and stepping stones and ponds! She is 70 and made this garden oasis from scratch, bare yard, 5 years ago but I digress!) We were outside in the early evening in this dreadful heat and humidity for about an hour. By the time we got home, I was sick with fatigue and light headed (But I feel asleep by 11:30) and the next day I was even ACHIER than before. What I am trying to say, if I do insane stuff to push the limits, I do fall asleep earlier, exhausted. Kind of the way I fall asleep when severely sleep deprived. but the fibro pain, and neck stuff and bilateral carpal tunner/ulner pain wasn't worth it...but I DID do something more physical. and upper body stuff ALWAYS DOES ME IN!! but I thought I had beaten the odds....until the delayed exercise intolerance hit me the next day... I have often had payback from exercise but this is the worst. Plus, even tho inside, this horrible constant heat and humidity gets to me. So while I don't recommend pushing one to one's limits to fall asleep, I DID DO IT! I didn't know if this fit under this insomnia thread, and I didn't want to hijack it and make this about ME, ME, ME!! just giving an example that after 15 years of no physical UPPER BODY WORK, I pushed, I won (temporarily) but paid for it...though I have been to sleep earlier in the last three nights than I have been in a long time. Course if by typing this and jinxing myself and am awake until 3Am tonight..will let you all know. But I am not a fainter or I would NEVER have attempted to push myself.....it's all a long story (you mean longer than this?? Sophia???) but I have had to suddenly move into a friends home with my cats and am trying to help him spruce up a great house in a great neighborhood with curb appeal!! for his rescuing me from a crazy, mentally off but sometimes lucid elderly mother. My siblings support my leaving and agree my pathological lying mother is passive aggressive and mean and alternately nice. But I could take it no more. We built on an addition to her house and I expected to liver there permanently but she was to hateful and moody. I am stuck on my tiny income paying on the loan addtion even though I am no longer there, but that's the price I pay for getting sanity back. Thank God for my good friend who I have known for years and a fellow cat lover...letting me live here for nothing but pennies. So hence, my motivation to help him around the house...but also understands my physical limiationas. Anyway, this move has been the most traumatic thing in my life (my divorce years ago was very cordial!) but I am adapting and talking to my mom on the phone. she is "sick" this week, or pretending to be and my other two siblings are checking on her as they understand I am healing from the verbal abuse (I never lived with abuse and at my age, I aint going to) But gardening and LEARNING about gardening is VERY THERAPEUTIC though I don't recommend it in this heat. Sorry to ramble on so but needed to get this off my chest I guess.

Insomnia was my first symptom of things worsening in the late 1980's. SLeeping pills did nothing...Klonopin has helped more than ANYTHING and the occassional melatonin for resetting the sleep clock. But I just have adapted. I have horrible tinnitus so reading late at night, last thing doesn't work. TV on a sleep timer helps me IMMENSELY though I stay away from violent, intense movies and such. "Proper sleep hygeine" never did SQUAT!! ONCE MY INSOMNIA became chronic. FOR TRUE INSOMNIACS the normal stuff doesn't help. Heavy duty exercise makes me WORSE and can rev up my tired-wired sensation even 10 hours after the exercise. I just go with the flow. Work on computer, read with fan on and then turn on TV just loud enough to hear it and that helps a lot. after 15 years I have SOOOOOOOOOOO Been there, done that with 'natural sleep aids'. Melatonin is the most effective tho I just take part of 3mg tablet and put under my tongue until it dissolves and I have to spit out the left overs. I only use straight melatonin. DIFFERENCES in hormone (both female, cortisol and others) greatly affect the sleep wake cycle. I was seen by one of the top sleep docs in the area and he even treated me for free as he became curious about my MOST RESISTANT insomnia...but that was a few years before ANS problems were dx....I wonder what he would think now tho he understood that Klonopin helped more than most things...but he never understood the sleep hygeine not working. That stuff only works for folks who don't know how to relax...it's not for AUTONOMIC patients who have an over abundance of adrenalin SIMPLY from changing positions...hence the nickname POTS. Good luck in adapting...I have gone thru sporadic times of sleeping on my own and LOVED and ENJOYED the warm, fuzzy sleeping feeling I sometimes stumble onto!! I LOVE the sensation of getting sleepy since I rarely feel that way. Mostly just exhausted and wired...but hey, after 16 years, I adapt...and being disabled and not working....I just go with the flow.

I tilted my bed on concret blocks for about a year and got WORSE..we undid it...it was not tilted as much as some beds but enough. MANY OF US GET WEAKER with this...Also one doc wrote an article years ago that slightly elevating FEET would help some POTs pts more but I have not been able to find the site. A cardio I saw after my tilt briefly mentioned the article. Chris Calder mentioned it once on his site but I think he told me he lost the article. I WOULD LOVE to find and read about elevating the feet. I feel MUCH BETTER WITH FEET level with heart or over my head...I put my legs on pillows or over edge of couch or loveseatl. Be careful about jumping on the elevating head bandwagon...it made me feel worse but it was a long time before I realized it...Chris calder had a post about this years ago on his site...don't know if he still does or not. I feel MUCH BETTER lying down but work to walk and exercise to FIGHT gravity.

You are welcome, Julie...hang in there. The RIGHT attorney who has your best interest at heart makes all the difference. Hang tough.

I had this done a few years ago to confirm carpal tunnel...it's a little uncomfortable at times but WORTH IT to get answers...at least that is my philosophy. I was able to lie down on my back during it which helps immensely.

Julie it sounds like you need to get a good disability attorney. It matters not one whit what the 'tests' say. It's what SYMPTOMS prevent you from being EMPLOYABLE. that's where a savvy attorney is your best friend. Nina has posted many disability links I posted about here someplace on this site. Please check them out. It's not your job to have to explain your limitations...your attorney should know how to do this before your case goes before a judge. after all, if you could go and quote chapter and verse on your situation, in a succinct manner, you wouldn't seem all that 'disabled' according to the rules. It takes TIME AND ENERGY to prepare a case. get a better attorney. This one does no inspire confidence...I would tell her "Your fired" AFTER talking to someboyd else of course!! Check out the disabilitysecrets.com web site for one..there were some others..too tired and can't sleep.

I have arthritic hands AND bilateral carpal tunnel so things that 'take work or are difficult to pull' ain't an option for me. THANKFULLY, the ab binders help IMMENSELY. I also walk and prance in place to get my blood going sometimes in the morning. I may look silly but it helps...I also move my arms about. I have used the white binder under sleeveless summer dresses to get things done. I read on an exercise site there is a summer mesh version but it was like $140! That's almost 1/3 of my monthly income...but I hope to find a cooler version of what I have. It is SO NICE to be able to be upright. Also, I used the abdominal binder at times when I exercise to get me used to being upright and it helped IMMENSELY. I MUST exercise, when possible due to boneloss. Whatever works for any of us, right? I have used my gizmo's for SEVERAL years, by the way. It would be interestiing to have my BP taken during and after wearing my waist thingies....

Wow, I am too claustropohic to wear girdles and with my hands, would be tough to put on. BUT one thing I found help me are backsupport/abdominal binders. They fit from bra line to a bit below hip bone. I use a rubber one (that is too hot in summer) and a white velcro one in summer. My sister used the white one for back problems a couple years ago for a bit and then let me have it. Both are quite snug...so much that when I take them off, I get a bit lightheaded, but that's how I know they keep the blood pushed upward.. Good news? with this I can clean house or even work in the yard briefly to do light gardening...in COOL weather and *** frequent breaks. THis makes all the difference in the world to me and I don't have to worry about MAJOR HASSLES to go to the bathroom or anything. The rubber type can be found in any exercise section at the stor, Walmart/Meijer, etc. or sporting goods store. These are all great if one can tolerate them. But for those who hate the suffocating feelings of a girdle (yikes!) I strongly recommend just a good waist/back binder. You'd be surprised how much that can help as well. *This is similar to the one I have but I took out the stays. My sister got this at a medical supply store in town. http://www.docortho.com/Orthopedic_Support..._11_150154.html

Sorry about the ER visit but thank goodness everybody really 'heard you'. Yes, I take a beta blocker as needed...only once in a while...very low dose...10mg propranalol. It's generic Inderal. Many entertainers take bb's for stagefright as needed, especially the short acting kind. Always know the name of your meds, folks, and what they do. and the kind of med it is. We sure can't count on the doctors and we usually know our own bodies better. If we aren't our own advocates nobody else will be. I am glad you got a compassionate bunch, Emily. Nice to hear a positive ER story. P.S. What, pray tell, is a Dinet card???????

I posted this elsewhere, Michelle but posted it here so you wouldn't have to spend time re-sifting thru info if you didn't have to. If you have already mentioned my suggestion and I missed it, I am sorry for the redundancy. ~~~~~~~~~~~~~~~~~ Michelle and others, As a somewhat new poster to this site I think the confusingly titled, or off topic threads could be helped by one thing: Specific topic names of a new thread. SOme have generic titles that don't tell you enough about the subject matter, imo. Many post "Help, what's this? or Med question" and we have no idea what they mean. OR they type 'off topic' and you don't know what that means. OFF TOPIC like they want to rant about a problem with a kid/spouse or off topic like getting a parking ticket?? (As far as updating on cats each day, has SOMEBODY really done that? LOL. I am a proud, responsible, Kathie Lee Gifford type CAT mom of two indoor 'kids' but would never think of wasting valuable space here for pet news or daily diaries of my stuff.) If folks want to keep personal diaries, to it on your own site. I didn't know folks did that here. If people could be, in GENERAL, more DETAILED in naming threads, that could help MANY OF US that simply don't have the energy to read all the posts here. I admit, I don't read many posts here but it would be nice to know what I am clicking on by the 'title' of the topic. Maybe that's a HUGE thing to ask but just a suggestion. That way, if folks aren't interested in a certain problem or poster they can just SKIP IT. None of us are forced to read all the threads when we come here. Why choose to aggravate yourself by a subject or poster? We are all adults and should not bother Michelle and Nina with minutia, jmo. Part of using the Internet is to act and behave responsibly like an adult. Oh, and another IMPORTANT FEATURE I have used many times...the EDIT button!!! that way, if one of us has temporarily lost our senses and ranted and raved, we can apologize and or EDIT our posts. I have had shoelaces hanging out of my mouth on occassion (from inserting my foot!!) but have NEVER hesitated to state my case, edit and or apologize. Part of this illness IS feeling like **** and being cranky but it is NO excuse to be hateful to people. oh, and the off topic stuff about MUSIC and MOVIES should NOT TRULY be off topic but "coping mechanisms" in dealing with chronic illness. aka Therapy!! It's all about common sense and moderation in how we present our posts. Thanks for all who moderate this place. And BIG THANKS for keeping RELIGION OUT of the picture. That's a personal situation.

Michelle and others, As a somewhat new poster to this site I think the confusing or off topic threads could be helped by one thing: Specific topic names of a new thread. SOme have generic titles that don't tell you enough about the subject matter, imo. Many post "Help, what's this?" and we have no idea what they mean. OR they type off topic and you don't know what that means. OFF TOPIC like they want to rant about a problem with a kid or off topic like getting a parking ticket?? As far as updating on cats each day, has SOMEBODY really done that? LOL. I am a proud, responsible, Kathie Lee Gifford type CAT mom of two indoor 'kids' but would never think of wasting valuable space here for pet news or daily diaries of my stuff. If folks want to keep personal diaries, to it on your own site. If people would be, in GENERAL, more DETAILED in naming certain threads, that could help MANY OF US that simply don't have the energy to read all the posts here. I admit, I don't read many posts here but it would be nice to know what I am clicking on by the 'title' of the topic. Maybe that's a HUGE thing to ask but just a suggestion. That way, if folks aren't interested in a certain problem or poster they can just SKIP IT. None of us are forced to read all the threads when we come here. Why choose to aggravate yourself by a subject or poster? We are all adults and should not bother Michelle and Nina with minutia, jmo. Part of using the Internet is to act and behave responsibly like an adult. Oh, and another IMPORTANT FEATURE I have used many times...the EDIT button!!! that way, if one of us has temporarily lost our senses and ranted and raved, we can apologize and or EDIT our posts. I have had shoelaces hanging out of my mouth on occassion (from inserting my foot!!) but have NEVER hesitated to state my case, edit and or apologize. Part of this illness IS feeling like **** and being cranky but it is NO excuse to be hateful to people. oh, and the off topic stuff about MUSIC and MOVIES should NOT TRULY be off topic but "coping mechanisms" in dealing with chronic illness. aka Therapy!! It's all about common sense and moderation in how we present our posts. Thanks for all who moderate this place. And BIG THANKS for keeping RELIGION OUT of the picture. That's a personal situation.

I think your problem is the ALCOHOL in this 'vodka based energy' drink?? Didn't know they made such things until I typed it in a search engine. Alcohol can make us feel TERRIBLY, INSTANTLY as it can lower BP and speed up HR. I dont' know how much caffeine is in the drink but for most of us, the vasodilating factors of the booze would over ride the caffeine. i can't do alcohol at ALL! Even one huge sip of a person's beer on an empty stomach and I can feel it in my toes in a couple of minutes. Some of us are VERY SENSITIVE to such things...just my two cents...

Julie I am sorry for what you put up with at the NSG. That is just so depressing. I hope you get some better answers soon, hang in there. Sophia

Emily Yes, 'tis I, Sophia from NDRF.

Jenn Wow, that is interesting you went off the DDAVP and the Lyme disease could be evening things out for you. Interesting to read about the so called diabetes insipidus many have been told and "untold" they have....not your case but many others I used to hear about..... since many of us seem to have a 'false' version of it . Whatever my version is, not only does it varie on it's own but somedays I only need one dose of DDAVP and other times need the second dose...OR I don't need any at all. And all the sodium in the world does not help BUT Gatorade does. I rarely drink straight water anymore unless on a dose of the DDAVP but I keep it within reason of course. You just never know with our bodies, do we? Or what helps one, hinders another. We are all like snowflakes in our uniqueness!!

Ernie I am somewhat confused over the religion deal as some other sites have posted STRONG religous stuff that never got yanked and then when debate was brought up, it did get yanked. Prosyletizing is one thing but SHOVING a specific relgion on somebody IS OFFENSIVE and I believe that was addressed here last week. I am not the least bit into organized religion but respect those that are. Hence, my favorite way to tell somebody that I am thinking of them during a surgery or tough time has been to say "sending positive thoughts and generic prayers." THAT WAY, the person on the recieving end, can make the prayers fit THEIR situation w/o becoming offended. Just my token opine on that subject. I think we should feel free to be of ANY religion OR even free of religion--that is what this country is about!-- AND STILL BENEFIT from a site based on ANS illness, sharing and enlightenment. Peace to all