Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 Hi Melinda, thanks for your reply back, i know im devestated about shauna getting up on her own, i just dont see it happening ive tried so much, if you hear of anything please let me know , im desperate for anyones advice. Im a single parent and will be returning back to work real soon thanks Patty in calif. Re: new to this site > > Hello Patty, one bit of practical advice here is to see if you can divide > her Risperdal dose or otherwise change the timing of the dose. Risperdal > also makes my daughter sleepy, and dividing the pill and giving it twice > during the day (rather than all at night) made it easier for her to get up > in the morning once school started, less grogginess, etc. > > Another thought it, do you have a neighbor who might be willing to drop in > to make sure your daughter is up on school mornings? My working Mom did > this, the neighbor just got us up and going, then went on back home. > > Finally, would your daughter consider going to bed earlier on school nights? > That sounds simple enough but might make the difference in the morning. > BTW, I can pretty much control when my daughter falls asleep by the timing > of her Risperdal, she's out about an hour after I give it to her. Sneaky, > but works! > > Take care, > Kathy > > > > ----- Original Message ----- > From: " patricia manzanares " <pattymanzanares@m...> > > > Dear Peggy sue, thanks for your advise, and yes its good to know im not > alone, i just wish i had more answers so i could make better decisions about > things, Im going back to work in a couple of weeks after being off 3.5months > due to surgery and my girl will have to get up on her own and get ready for > school , ill be at work and I CANT EVEN GET HER UP , she has always been a > hard sleeper, but now takeing zoloft and resperdal she is truly a hard > sleeper, any advise from anyone would be great, cause i am the soul support > and do have to go back to work soon thanks much Patty in california > > > > > You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD-subscribe@y... . You may subscribe to the OCD and Homeschooling List at ocdandhomeschooling-subscribe@y... . You may change your subscription format or access the files, bookmarks, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., Aureen Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are Birkhan, Kathy Hammes, Joye, Jule Monnens, Gail Pesses, Kathy , Vivian Stembridge, and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at lharkins@b... . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2001 Report Share Posted October 10, 2001 The telephone nor alarm clocks wouldn't wake my vampire-teens up around here. I had to resort to squirt guns and bricks. (kidding about the bricks) Then, I smartened up, realized that all my 'squirting' was enabling, and let them be late to school/work and suffer the consequences. Sitting in detention seemed to give them a wake up call more than I ever could. If the hidden alarm clocks work, -- go for it. The fire department couldn't wake my guys up. Joni > Yeah, but what's so hard about hitting the snooze button and climbing right > back into bed?? Annie does that every morning. And is still furious when we > wake her up again later. I'm thinking about a series of hidden alarm clocks > for her. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2001 Report Share Posted October 11, 2001 ----- Original Message ----- From: " patricia manzanares " <pattymanzanares@...> > Dear Kathy, you are a wonderful person and you have msde me feel so much better, i think you might be my guardian angel haha I can tell you have alot of experience and boy is it appreciated Kathy, thanks so much and please email me again when you can your great patty in california bye Well, *blush.* :-) It's just that so many of our OCD kids have the same sorts of problems/issues that I have been through most of it in the last three years since my daughter's onset. That's what I love about this list--we're able to share quickly our experiences and solutions, and help keep other parents from having to learn everything on their own, the hard way. I leaned on this list alot back when I was new at parenting an OCDer, and have no doubt that my daughter would not have made so much improvement so quickly if not for the on-target advice I received here. Thanks for the kind words, Kathy R. in Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2001 Report Share Posted October 13, 2001 Hi , I am just now getting caught up on last weeks posts...the situation at Tommy's school took every bit of my time. I have heard of kids who have AD/HD and accompanying getting out of bed problems and they often do have a series of alarm clocks that go off. They are not anywhere within reach of their bed. I also know of a woman who used to get her son into the bathroom and they would find him sometime later sleeping in the shower! Tommy often has trouble getting up. I used to give him a piggy back ride down to breakfast. He would then lay down on a bench we have in our kitchen with his blanket until he felt like he could face the morning. I don't carry him down any longer as he has gotten too big, but I do have to help him out of bed and I usually put my arms around him and walk downstairs with him getting hugged all the way. I sure wish someone would do this for me in the morning! in Southeastern PA xslav@... wrote: Yeah, but what's so hard about hitting the snooze button and climbing right back into bed?? Annie does that every morning. And is still furious when we wake her up again later. I'm thinking about a series of hidden alarm clocks for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 Hi Pat, Welcome to the board. The alcohol thing will definitely compromise your results if you don't kick it to the curb. If you're tempted to have wine in the evening, remember that you're going to stop burning fat for up to 4 days afterward. Your liver won't metabolize any fat until ALL the alcohol is out of your system. So, every time you have a few drinks, you could be undoing days of hard work. Plus, alcohol contributes to the storage of abdominal fat. Once you look at it like that, it makes it easier to say no. Having abs like Batman is way more fun than having a few drinks. :-) You can do this! Keep us posted on your progress. New to this site Just wanted to introduce myself..I am Pat,I am 48yrs old, 5'3 " and about 138lbs...Two years ago I did the BFL challenge. I improved a bit, but was stubborn and did not follow the diet totally (and therefore limited my results). In between it seems I became post menapausal and had a huge hormone issue which really messed with my weight as well as my mind. SO....now that I am weighing more than I ever have (even in pregnacy)and feeling like a failure, I have decided to give this a go once more. I have reread the book and plan to start on Monday. I already have my bench (from before)my weights, a tricep bar and bicep bar and then in my office I have a Soloflex machine. I plan to do my workouts from home. Any advice and or encourgement would be appreciated. I am fearful that I will lose my enthusiasim. One of my biggest road blocks is that I like to drink a few glasses of wine (or rum and coke) in the evenings. I am afraid this has become quite a habit with me and one of my challenges will be to save the wine for freeday. Hmmmmm...easier said than done. Well, now you all know something about me and I hope to stay motivated and this site will surely help. Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2002 Report Share Posted December 28, 2002 > Hi Pat, > > Welcome to the board. The alcohol thing will definitely compromise your results > if you don't kick it to the curb. If you're tempted to have wine in the evening, > remember that you're going to stop burning fat for up to 4 days afterward. Your > liver won't metabolize any fat until ALL the alcohol is out of your system. So, > every time you have a few drinks, you could be undoing days of hard work. Plus, > alcohol contributes to the storage of abdominal fat. > > Once you look at it like that, it makes it easier to say no. Having abs like > Batman is way more fun than having a few drinks. :-) You can do this! Keep us > posted on your progress. > > That is EXACTLY why I " failed " the last time. I did everything right, working out, not missing a day BUT I would " Allow " myself my nightly habit of wine. SO>>>>I did not get my results the way I wanted (even though I lost some and my body was strong). And yep, THAT is where I store my fat...in the stomach! I will keep you posted and thanks for the welcome. Oh, is free day okay though? Pat > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2002 Report Share Posted December 29, 2002 > Just wanted to introduce myself..I am Pat,I am 48yrs old, 5'3 " and > about 138lbs...Two years ago I did the BFL challenge. I improved a > bit, but was stubborn and did not follow the diet totally (and > therefore limited my results). In between it seems I became post > menapausal and had a huge hormone issue which really messed with my > weight as well as my mind. I'm 37 and went through early menopause a few years ago. The doctors couldn't figure out what was wrong with me until my OB/GYN took a chance and did the FSH test. He told me he didn't expect me to be in the big M, but he apologized when he got the results. heehee! Anyway...I've gained weight and a lot of it was due to the big M. I'm determined to lose it now though. Are you on hormones? My doctor changed me to a patch since I was concerned about weight loss. We'll see... Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Hi Karin, My daughter is 13 years old and also has no detectable levels of IgA her blood. You probably know all about how to treat sinusitis and pneumonia by now. has suspected selective antibody deficiency as well. In addition she has a pacemaker and mechanical heart valve. Welcome to the group! Martha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2003 Report Share Posted February 11, 2003 Karin: You may want to consider taking your son to the IDF conference in Baltimore this June. He'll get to hang out with a bunch of kids like him! I know a lot of the kids really loved that aspect of the conference 2 years ago. (mom to Kate, born 9/19/02; and , age 4 -- currently has polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other defs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 > > Hello all, I havent been totally diagnosed with achalasia yet but > the GI doc did the endoscopy and said thats probably what i have.. I > have been choking on my food since May of last year and it has only > gotten worse.. severe pains in chest neck and back.. i sleep like > the elephant man.. i have lost weight.. thats not a bad thing but > its bad how ive lost it.. im in the process now of finding me a new > GI doctor because my doc i have now just isnt working out.. his > receptionist is not all tehre and the only time she rushes my stuff > through is when i go off on her and ask to speak to the doc myself.. > I had my endoscopy done in september i am having a manometry (excuse > the spelling) done in February.. I have gotten worse in the last > week.. I am in serious pain.. nothing seems to go down and it gets > stuck so bad i have to throw it up.. I also dont know much on thsi > disorder only what ive read on the internet and it doesnt sound > good..I am very afraid of this.. I am a mother of 6 wonderful kids > and i am only 30 years old.. Is there anyone that can relate to me > and maybe become a friend through this.. I feel alone because noone > knows what im feeling.. I am in need of support and understanding > and would like some feed back... thanks I can tell you right now, you are not alone! I may not be a mother of 6 beautiful kids but I know how you are feeling. I'm only 19 and I have had achalasia for two years now. For me it was extremely painful at first but I got used to it and sort of adapted. I was always the last person done eating and I had to force everything down with tons of water. However, last Tuesday I had a procedure called a Heller's Myotomy done. So far everything feels good. I can't eat solids yet but there's already improvement. Welcome to the " club " there are so many educated people on this message board. You are sure to find a lot in common with everyone. There are numerous procedure you could have done, mine is supposedly the most permanent. From what I know, there are balloon dialations and another procedure is to inject your lower esophageal sphincter (les) with botox. If you are seriously concerned about the achalasia then you should definitely consider one of these procedures. Good luck with everything, I'll be around. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Hi -- welcome to the group -- not sure of your name -- but I am Peggy, 48, from Central california and I am in the same exact spot in the process as you -- I have a difficult local medical office and I am trying to get referred on for treatment. 15 months have gone by so far. I am " tentatively " diagnosed as the fools at my local clinic failed to get the critical measurement to confirm diagnosis duing the manometry. Read the many posts and you will get lots of helpful information to find your path. Feel free to email me directly if you want to work together. Peggy > > Hello all, I havent been totally diagnosed with achalasia yet but > the GI doc did the endoscopy and said thats probably what i have.. I > have been choking on my food since May of last year and it has only > gotten worse.. severe pains in chest neck and back.. i sleep like > the elephant man.. i have lost weight.. thats not a bad thing but > its bad how ive lost it.. im in the process now of finding me a new > GI doctor because my doc i have now just isnt working out.. his > receptionist is not all tehre and the only time she rushes my stuff > through is when i go off on her and ask to speak to the doc myself.. > I had my endoscopy done in september i am having a manometry (excuse > the spelling) done in February.. I have gotten worse in the last > week.. I am in serious pain.. nothing seems to go down and it gets > stuck so bad i have to throw it up.. I also dont know much on thsi > disorder only what ive read on the internet and it doesnt sound > good..I am very afraid of this.. I am a mother of 6 wonderful kids > and i am only 30 years old.. Is there anyone that can relate to me > and maybe become a friend through this.. I feel alone because noone > knows what im feeling.. I am in need of support and understanding > and would like some feed back... thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 Welcome to group.This group is wonderful.It so full of info and caring people that understand what we are going through.It is so hard to explain this disorder to others.Let us know how your tests go. Keep in touch Sherry from Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Welcome to the group and happy late b-day too...lol. I am sorry to hear about your troubles. Is your husband now back from the desert? My wife is in the USAF so I understand about the miltary thing. Back about ten years ago when I had my manometry it was no big deal. Well at least for we it was not. Right now I also am having to travel 2 hours to see the specialist so I understand that side too. I am not taking and meds right now so I cannot give you insight on that. I did have to take Reglan in the liquid form for a while but I am no longer taking that. I hope everything else is well with you and your family. Keep us posted. in Suffolk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 , welcome to the group. Your story will sound familiar to many on this board just as it did to me. The worst part for me was when I reached the point I could not keep down water. I stayed so thirsty all the time! I am sorry you had such a hard time with the manometry. While they are never the most pleasant thing in the world, they don't have to be that bad. I have a feeling that the one coming up will be an improvement over your last one. I find it strange that they are going to sedate you. I have read that they can't get a true reading that way. However some are sedated while they insert the tube and then awake during the test. If you could get a copy of your last manometry and take it with you the comparison might help them. My advise is to go ahead and get started on these things that have to be done sooner or later. Better to take care of it before it becomes worse. If your doctor has done 30 or 40 myotomies that is not a bad number considering the rarity of this disease. I too travel about 2 hours to see my doctor. Somehow it seem not so far after a few trips. Procardia is often prescribed for the spasms and a lot of people have had good luck with it. As you said it is a blood pressure medication and lowers the blood pressure. As a result everyone can't take it, but it seems to work for you and that is great. We are here for you. More questions? Ask away, someone here will have the answer for you. Thanks to your husband for serving our country and helping to keep the rest of us safe. Hugs, Maggie Alabama Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi , Just wanted to comment on the manometry. Sounds like you had somebody really bad try to do it the first time. I have had it 3 times and while it is not the most fun thing it was not intolerable. The person doing it should spray your nose and back of the throat with a numbing agent and the worst is getting the tube in place, then try really hard to relax and breathe through your mouth, focus on a spot on the wall or ceiling. Basically, try to get to an " out of body " place in your head where you can hear the technicican but you are thinking of other things. Not easy, but it can be done!! If you have been doing research then you know that it really important to have this done to verify the diagnosis. The worst is the anticipation. I can't comment on the meds, good luck to you. Liz > > Hi everyone. I am new to this site although I have been lurking for > about a week. Some of my favorite posts to read are those where > someone new comes along and describes their symptoms because I can > compare them to mine so that is what I am going to do. > > My name is and I just turned 33. My achalasia started off > as what I am assuming were spasms about 2 years ago. I always had to > have water with me as that was the only thing that would stop them. > Of course, I figured it was acid reflux causing the sensation. The > pain would radiate all the way into my jaw ans sometimes become > incapacitating. > > Eventually I had more and more trouble swallowing food to the point > where the only way to get relief was to regurg. YUCK!! It got more > and more fun to go out to dinner with others as I ran for the > bathroom after every 4 or 5 bites. I would have to take 5 minutes > between bites and wait for the food to go down. Sometimes I would > excuse myself to the restroom but it would go down on the way there > and I would return to eat and do the whole thing over again. I > didn't do much with it until it got to the point where I couldn't > swallow water all the time. Finally I went to the doctor who said I > had acid reflux and wanted to do the EGD and barium swallow. I was > diagnosed with GERD and gastricitis and put on acid reflux meds - > none seemed to work at all and I think I tried them all. The > swallowing was getting worse. Finally my GI had me scheduled for a > manometry. WELL, if I had known the absolute torture that was going > to be I would have never shown up that day! That was a year ago. > After a major failed attempt I bid farewell to doctors. > > My husband was in Iraq during most of this and had no idea about the > regurg until he came home once on emergency leave. After 6 months > there, he finally came home and immediately made me go to the > doctor. By the time he came home I had lost about 35 pounds and was > often dehydrated. So finally in September I made and appointment > again vowing to quit if the doctor made me get a manometry. He > didn't. I had a EGD that didn't tell us much and then a barium > swallow that showed the classic birds beak appearance at the bottom > of my E. I looked at the doctor in the x-ray room and said 'That > looks like achalasia to me " . (I knew this after a lot of Internet > research of course). He looked shocked and told me he had never > heard anyone say that word. Hmmmm. Anyway, this January, once the > barium swallow got back to my GI, he confirmed achalasia. Since he > did not have any experience with it, he referred me to a doctor in > St. Louis - Dr. . That was a 126 mile trip from Fort > Leonard Wood but I have good insurance with the military. He also > prescribed me Procardia which he thought might relax my smooth muscle > some. It is a high blood pressure medicine and even though I had low > blood pressure already he thought it was safer than me starving and > dehydrating (I had already gone to the ER a couple times for an IV to > get fluids in me). Unbelievably the Procardia worked and I have been > able to swallow as long as I take it before a meal for the last 5 > weeks now! I can still feel the stick and I have about a 45 minute > window to eat but I have gained back 7 pounds. > > I saw the specialist in St Louis on Friday and he did not have ANY > experience with achalasia. But his partner a Dr Myers had done about > 30- 40 myotomies. I didn't get to see him however , because he was > doing a lung transplant. I was not real impressed with driving 2 > hours for THAT....and especially because he wanted a manometry. > YIKES!!!!!!!! NOOOO. I asked them about sedation and they said it > was possible. Well that is where I am now - manomerty scheduled for > next Friday. I don't want to do it because this Procardia is > working. The problem is, I have had to triple my dosage for the same > effect in only a 5 week period....is this bad? Does anyone else have > experience with Procardia? And how do you get through the > manometry? Also, is 30 - 40 manometries enough experience? I have > the option of Dr Eubanks at U of Missouri Columbia as > well....any one with experience of any of these docs? Please help - > I don't know what to do at this point and am thinking about staying > on the drugs until they don't work anymore - I am too darned scared > of that manometry. > > I have read a lot on this site and know already what wonderful people > you are so I really appreciate your time reading my mini-book. Any > help or guidance would be extremely appreciated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hello : Welcome to the group. There are alot of very well informed people who post here and are terrific about answering your questions with great backed up documentation. I am just going to answer you from my gut! ARE YOUR DOCTORS MONOTERING YOUR BLOOD PRESSURE CONSTANTLY??? You do not want to exchange one problem (which you CAN'T get rid of), for another problem and possibly damage your heart in the process. I know you hear about high blood pressure being a problem, but I am sure that excessively low blood pressure isn't good either. I hope you have purchased a monitor at your local drug store and are taking your blood pressure every day. PLEASE be careful. If you have, on your own, tripled the dosage, that rings alarm bells for me. Perhaps I do not know what I am talking about ... (and if that is the case, I am positive one of our fabulous researchers will correct me), but I think you are playing with fire. OK ... off my soap box! 2nd thing ... Please thank your husband for going to Iraq, and know that we appreciate the sacrifice that he, you, and your family are making. You are not forgotten, and will be included in my prayers. PLEASE BE CAREFUL1 Kathie from Pittsburgh > > Hi everyone. I am new to this site although I have been lurking for > about a week. Some of my favorite posts to read are those where > someone new comes along and describes their symptoms because I can > compare them to mine so that is what I am going to do. > > My name is and I just turned 33. My achalasia started off > as what I am assuming were spasms about 2 years ago. I always had to > have water with me as that was the only thing that would stop them. > Of course, I figured it was acid reflux causing the sensation. The > pain would radiate all the way into my jaw ans sometimes become > incapacitating. > > Eventually I had more and more trouble swallowing food to the point > where the only way to get relief was to regurg. YUCK!! It got more > and more fun to go out to dinner with others as I ran for the > bathroom after every 4 or 5 bites. I would have to take 5 minutes > between bites and wait for the food to go down. Sometimes I would > excuse myself to the restroom but it would go down on the way there > and I would return to eat and do the whole thing over again. I > didn't do much with it until it got to the point where I couldn't > swallow water all the time. Finally I went to the doctor who said I > had acid reflux and wanted to do the EGD and barium swallow. I was > diagnosed with GERD and gastricitis and put on acid reflux meds - > none seemed to work at all and I think I tried them all. The > swallowing was getting worse. Finally my GI had me scheduled for a > manometry. WELL, if I had known the absolute torture that was going > to be I would have never shown up that day! That was a year ago. > After a major failed attempt I bid farewell to doctors. > > My husband was in Iraq during most of this and had no idea about the > regurg until he came home once on emergency leave. After 6 months > there, he finally came home and immediately made me go to the > doctor. By the time he came home I had lost about 35 pounds and was > often dehydrated. So finally in September I made and appointment > again vowing to quit if the doctor made me get a manometry. He > didn't. I had a EGD that didn't tell us much and then a barium > swallow that showed the classic birds beak appearance at the bottom > of my E. I looked at the doctor in the x-ray room and said 'That > looks like achalasia to me " . (I knew this after a lot of Internet > research of course). He looked shocked and told me he had never > heard anyone say that word. Hmmmm. Anyway, this January, once the > barium swallow got back to my GI, he confirmed achalasia. Since he > did not have any experience with it, he referred me to a doctor in > St. Louis - Dr. . That was a 126 mile trip from Fort > Leonard Wood but I have good insurance with the military. He also > prescribed me Procardia which he thought might relax my smooth muscle > some. It is a high blood pressure medicine and even though I had low > blood pressure already he thought it was safer than me starving and > dehydrating (I had already gone to the ER a couple times for an IV to > get fluids in me). Unbelievably the Procardia worked and I have been > able to swallow as long as I take it before a meal for the last 5 > weeks now! I can still feel the stick and I have about a 45 minute > window to eat but I have gained back 7 pounds. > > I saw the specialist in St Louis on Friday and he did not have ANY > experience with achalasia. But his partner a Dr Myers had done about > 30- 40 myotomies. I didn't get to see him however , because he was > doing a lung transplant. I was not real impressed with driving 2 > hours for THAT....and especially because he wanted a manometry. > YIKES!!!!!!!! NOOOO. I asked them about sedation and they said it > was possible. Well that is where I am now - manomerty scheduled for > next Friday. I don't want to do it because this Procardia is > working. The problem is, I have had to triple my dosage for the same > effect in only a 5 week period....is this bad? Does anyone else have > experience with Procardia? And how do you get through the > manometry? Also, is 30 - 40 manometries enough experience? I have > the option of Dr Eubanks at U of Missouri Columbia as > well....any one with experience of any of these docs? Please help - > I don't know what to do at this point and am thinking about staying > on the drugs until they don't work anymore - I am too darned scared > of that manometry. > > I have read a lot on this site and know already what wonderful people > you are so I really appreciate your time reading my mini-book. Any > help or guidance would be extremely appreciated. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Liz, Thank you for the tips on the manometry. I have read on this site before that people have been able to receive a valium or some type of mild sedative to help them get through the manometry. My anxiety is so bad for it that I will absolutely need it. I haven't had a successful one yet but I will use your tips when I go in next Friday. All, thank you for the welcomes! The doctor took a chest xray Friday and had commented that I will need the manometry since my E is not dilated and I had no air in my stomach. Well, they took the chest x ray about an hour after I had taken my Procardia and was able to eat a small breakfast and drink some coffee so I am not sure how conclusive it was anyway. They told me I shouldn't drink coffee but to tell you the truth, I don't know why....it doesn't seem to bother me. Ever since the swallowing problem started I did't have any heartburn. I still think it was just spasms and I can recognize them now - water stops them. If there are any of you that are ABLE to take Procardia and haven't tried it yet, I encourage you to look into it. I take it before each meal and am able to get everything down. HUGE RELIEF!! It probably has me fooled though because it doesn't work the same as it did 5 weeks ago when I started it, but it has saved me from being admitted to the hospital. I was so starved and so dehydrated, and not to mention depressed, it was hard for me to function. I even went to the hospital for IV's so that I could go to work. I feel great now though, I am just taking it until I can get the manometry and finally the surgery. I am not messing with dilations or Botox. I just hope it keeps working as long as I need it and that there are not any negative effects. I never thought I would find relief without surgery and was actually scared for my life so please check into this if you are as bad as I was. > > > > Hi everyone. I am new to this site although I have been lurking > for > > about a week. Some of my favorite posts to read are those where > > someone new comes along and describes their symptoms because I can > > compare them to mine so that is what I am going to do. > > > > My name is and I just turned 33. My achalasia started > off > > as what I am assuming were spasms about 2 years ago. I always had > to > > have water with me as that was the only thing that would stop > them. > > Of course, I figured it was acid reflux causing the sensation. > The > > pain would radiate all the way into my jaw ans sometimes become > > incapacitating. > > > > Eventually I had more and more trouble swallowing food to the > point > > where the only way to get relief was to regurg. YUCK!! It got > more > > and more fun to go out to dinner with others as I ran for the > > bathroom after every 4 or 5 bites. I would have to take 5 minutes > > between bites and wait for the food to go down. Sometimes I would > > excuse myself to the restroom but it would go down on the way > there > > and I would return to eat and do the whole thing over again. I > > didn't do much with it until it got to the point where I couldn't > > swallow water all the time. Finally I went to the doctor who said > I > > had acid reflux and wanted to do the EGD and barium swallow. I > was > > diagnosed with GERD and gastricitis and put on acid reflux meds - > > none seemed to work at all and I think I tried them all. The > > swallowing was getting worse. Finally my GI had me scheduled for > a > > manometry. WELL, if I had known the absolute torture that was > going > > to be I would have never shown up that day! That was a year ago. > > After a major failed attempt I bid farewell to doctors. > > > > My husband was in Iraq during most of this and had no idea about > the > > regurg until he came home once on emergency leave. After 6 months > > there, he finally came home and immediately made me go to the > > doctor. By the time he came home I had lost about 35 pounds and > was > > often dehydrated. So finally in September I made and appointment > > again vowing to quit if the doctor made me get a manometry. He > > didn't. I had a EGD that didn't tell us much and then a barium > > swallow that showed the classic birds beak appearance at the > bottom > > of my E. I looked at the doctor in the x-ray room and said 'That > > looks like achalasia to me " . (I knew this after a lot of Internet > > research of course). He looked shocked and told me he had never > > heard anyone say that word. Hmmmm. Anyway, this January, once > the > > barium swallow got back to my GI, he confirmed achalasia. Since > he > > did not have any experience with it, he referred me to a doctor in > > St. Louis - Dr. . That was a 126 mile trip from Fort > > Leonard Wood but I have good insurance with the military. He also > > prescribed me Procardia which he thought might relax my smooth > muscle > > some. It is a high blood pressure medicine and even though I had > low > > blood pressure already he thought it was safer than me starving > and > > dehydrating (I had already gone to the ER a couple times for an IV > to > > get fluids in me). Unbelievably the Procardia worked and I have > been > > able to swallow as long as I take it before a meal for the last 5 > > weeks now! I can still feel the stick and I have about a 45 > minute > > window to eat but I have gained back 7 pounds. > > > > I saw the specialist in St Louis on Friday and he did not have ANY > > experience with achalasia. But his partner a Dr Myers had done > about > > 30- 40 myotomies. I didn't get to see him however , because he > was > > doing a lung transplant. I was not real impressed with driving 2 > > hours for THAT....and especially because he wanted a manometry. > > YIKES!!!!!!!! NOOOO. I asked them about sedation and they said > it > > was possible. Well that is where I am now - manomerty scheduled > for > > next Friday. I don't want to do it because this Procardia is > > working. The problem is, I have had to triple my dosage for the > same > > effect in only a 5 week period....is this bad? Does anyone else > have > > experience with Procardia? And how do you get through the > > manometry? Also, is 30 - 40 manometries enough experience? I > have > > the option of Dr Eubanks at U of Missouri Columbia > as > > well....any one with experience of any of these docs? Please > help - > > I don't know what to do at this point and am thinking about > staying > > on the drugs until they don't work anymore - I am too darned > scared > > of that manometry. > > > > I have read a lot on this site and know already what wonderful > people > > you are so I really appreciate your time reading my mini-book. > Any > > help or guidance would be extremely appreciated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Thank you for your concern Kathie. Yes, we are monitoring by blood pressure. My husband was a medic on the front lines in Iraq for 16 months and continues to work in the military hospital now that he is home. Thank you for your words of support for the troops - they need it. Anyway, he is VERY accustomed to checking blood pressure and we monitor mine. It is normally 100/80 or so and the lowest it has gone is 90/58 - that is still not abnormal for me even on the medication. I told the doctor that I was being bad and taking more than I should to eat. But those of you that have suffered a long time and finally gotten relief knows what it would be like to get relief and then lose it. I have stopped taking so much and am just using it when I am going to eat a 'big' meal. This medication is not intended to be used over a long period of time - just in the mean time before I can get a myotomy scheduled. It has kept me out of the hospital and given me a little better quality of life latey. I know I can't use it for ever even though I would like to. I am sure that if there is anyone able to use this temporary form of relief, their doctors will advise them the same - that it is only temporary and that it must be monitored. Being honest with my husband and doctor about how much I was taking will keep me from causing any future problems from the Procardia use. By the way, for anyone who is wondering. Procardia is a calcium channel blocker with the generic name of nifedipine. It will relax the smooth muscle (like your E) and is used to lower blood pressure. I am not sure of any long term effects, but I am not taking it long term. > > > > Hi everyone. I am new to this site although I have been lurking for > > about a week. Some of my favorite posts to read are those where > > someone new comes along and describes their symptoms because I can > > compare them to mine so that is what I am going to do. > > > > My name is and I just turned 33. My achalasia started off > > as what I am assuming were spasms about 2 years ago. I always had > to > > have water with me as that was the only thing that would stop > them. > > Of course, I figured it was acid reflux causing the sensation. The > > pain would radiate all the way into my jaw ans sometimes become > > incapacitating. > > > > Eventually I had more and more trouble swallowing food to the point > > where the only way to get relief was to regurg. YUCK!! It got more > > and more fun to go out to dinner with others as I ran for the > > bathroom after every 4 or 5 bites. I would have to take 5 minutes > > between bites and wait for the food to go down. Sometimes I would > > excuse myself to the restroom but it would go down on the way there > > and I would return to eat and do the whole thing over again. I > > didn't do much with it until it got to the point where I couldn't > > swallow water all the time. Finally I went to the doctor who said > I > > had acid reflux and wanted to do the EGD and barium swallow. I was > > diagnosed with GERD and gastricitis and put on acid reflux meds - > > none seemed to work at all and I think I tried them all. The > > swallowing was getting worse. Finally my GI had me scheduled for a > > manometry. WELL, if I had known the absolute torture that was > going > > to be I would have never shown up that day! That was a year ago. > > After a major failed attempt I bid farewell to doctors. > > > > My husband was in Iraq during most of this and had no idea about > the > > regurg until he came home once on emergency leave. After 6 months > > there, he finally came home and immediately made me go to the > > doctor. By the time he came home I had lost about 35 pounds and > was > > often dehydrated. So finally in September I made and appointment > > again vowing to quit if the doctor made me get a manometry. He > > didn't. I had a EGD that didn't tell us much and then a barium > > swallow that showed the classic birds beak appearance at the bottom > > of my E. I looked at the doctor in the x-ray room and said 'That > > looks like achalasia to me " . (I knew this after a lot of Internet > > research of course). He looked shocked and told me he had never > > heard anyone say that word. Hmmmm. Anyway, this January, once the > > barium swallow got back to my GI, he confirmed achalasia. Since he > > did not have any experience with it, he referred me to a doctor in > > St. Louis - Dr. . That was a 126 mile trip from Fort > > Leonard Wood but I have good insurance with the military. He also > > prescribed me Procardia which he thought might relax my smooth > muscle > > some. It is a high blood pressure medicine and even though I had > low > > blood pressure already he thought it was safer than me starving and > > dehydrating (I had already gone to the ER a couple times for an IV > to > > get fluids in me). Unbelievably the Procardia worked and I have > been > > able to swallow as long as I take it before a meal for the last 5 > > weeks now! I can still feel the stick and I have about a 45 minute > > window to eat but I have gained back 7 pounds. > > > > I saw the specialist in St Louis on Friday and he did not have ANY > > experience with achalasia. But his partner a Dr Myers had done > about > > 30- 40 myotomies. I didn't get to see him however , because he was > > doing a lung transplant. I was not real impressed with driving 2 > > hours for THAT....and especially because he wanted a manometry. > > YIKES!!!!!!!! NOOOO. I asked them about sedation and they said it > > was possible. Well that is where I am now - manomerty scheduled > for > > next Friday. I don't want to do it because this Procardia is > > working. The problem is, I have had to triple my dosage for the > same > > effect in only a 5 week period....is this bad? Does anyone else > have > > experience with Procardia? And how do you get through the > > manometry? Also, is 30 - 40 manometries enough experience? I have > > the option of Dr Eubanks at U of Missouri Columbia > as > > well....any one with experience of any of these docs? Please help - > > > I don't know what to do at this point and am thinking about staying > > on the drugs until they don't work anymore - I am too darned scared > > of that manometry. > > > > I have read a lot on this site and know already what wonderful > people > > you are so I really appreciate your time reading my mini-book. Any > > help or guidance would be extremely appreciated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 > Finally my GI had me scheduled for a manometry. WELL, if I had known the absolute torture that was going to be I would have never shown up that day! , Your reaction to manometry is exactly the same as mine! You probably have really small sinuses (like me) and that makes the turn very painful. See if your GI will allow you to injest the tube by mouth vs. through the nose. Then it is only slighly uncomfortable down the back of your throat. Liz's advise about finding a spot on the ceiling to watch from out-of-body should work. Also, see if your techs will let you watch the monitor and 'see' your E not working; it might be enough of a distraction. Also, take a driver along even though it isn't required so that you don't have to worry about functioning on the way home after the procedure. Whatever it takes, you really need to have this baseline for your own sake. It will help with establishing your treatment plan. And chances are you will not have to do this too frequently, once the diagnosis is confirmed. I was diagnosed with A in 1980 and I have only had 6 manometries since, most at the beginning. Trust me that the tube is smaller now then it used to be! As for taking the meds until they don't work, I haven't taken that drug. But there is a lot of information on this site that says you should treat now vs. waiting until things don't work. Unfortunately for me I did stop treatment for 15 years and I am probably beyond the Heller option (because my E is very distended and also has scarring from acid at the LES), but maybe you are close enough to the start of this crazy ride to have more options. So bite the bullet and have the manometry - reward yourself ahead of time with a new comfy outfit to wear during the procedure - and be sure to complain to this group about how aweful it was, because we know it's true. Best wishes, in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Thank you , until some words of encouragement from the group I was about to cancel my appointment for the manometry and just live iwth it! > > > Finally my GI had me scheduled for a manometry. WELL, if I had known > the absolute torture that was going to be I would have never shown up > that day! > > > , > Your reaction to manometry is exactly the same as mine! You > probably have really small sinuses (like me) and that makes the turn > very painful. See if your GI will allow you to injest the tube by > mouth vs. through the nose. Then it is only slighly uncomfortable > down the back of your throat. Liz's advise about finding a spot on > the ceiling to watch from out-of-body should work. Also, see if your > techs will let you watch the monitor and 'see' your E not working; it > might be enough of a distraction. Also, take a driver along even > though it isn't required so that you don't have to worry about > functioning on the way home after the procedure. > Whatever it takes, you really need to have this baseline for your > own sake. It will help with establishing your treatment plan. And > chances are you will not have to do this too frequently, once the > diagnosis is confirmed. I was diagnosed with A in 1980 and I have > only had 6 manometries since, most at the beginning. Trust me that > the tube is smaller now then it used to be! > As for taking the meds until they don't work, I haven't taken that > drug. But there is a lot of information on this site that says you > should treat now vs. waiting until things don't work. Unfortunately > for me I did stop treatment for 15 years and I am probably beyond the > Heller option (because my E is very distended and also has scarring > from acid at the LES), but maybe you are close enough to the start of > this crazy ride to have more options. > So bite the bullet and have the manometry - reward yourself ahead of > time with a new comfy outfit to wear during the procedure - and be > sure to complain to this group about how aweful it was, because we > know it's true. > > Best wishes, > in Michigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hi , Welcome to the group!! You seem to already have dove head first into all the information. Good for you. It has obviously helped you. I have never been on procardia, so I have no advice on that. If they are willing to sedate you for the manometry, you need to do it. It will only give your doctor/surgeon a better look at what you’ve got going on! As for 40 – 60 myotomies….the general consensus is 100…but I’d say it depends on the surgeon. Are you comfortable with what you’ve heard from him so far? Ask him for phone numbers of his patients. You can see how they are coping after surgery, and what they thought of him. It will all help you get a better feel for him. Good luck with your manometry. If you’re being sedated, its gonna be a breeze. Take care !! in BC New to this site Hi everyone. I am new to this site although I have been lurking for about a week. Some of my favorite posts to read are those where someone new comes along and describes their symptoms because I can compare them to mine so that is what I am going to do. My name is and I just turned 33. My achalasia started off as what I am assuming were spasms about 2 years ago. I always had to have water with me as that was the only thing that would stop them. Of course, I figured it was acid reflux causing the sensation. The pain would radiate all the way into my jaw ans sometimes become incapacitating. Eventually I had more and more trouble swallowing food to the point where the only way to get relief was to regurg. YUCK!! It got more and more fun to go out to dinner with others as I ran for the bathroom after every 4 or 5 bites. I would have to take 5 minutes between bites and wait for the food to go down. Sometimes I would excuse myself to the restroom but it would go down on the way there and I would return to eat and do the whole thing over again. I didn't do much with it until it got to the point where I couldn't swallow water all the time. Finally I went to the doctor who said I had acid reflux and wanted to do the EGD and barium swallow. I was diagnosed with GERD and gastricitis and put on acid reflux meds - none seemed to work at all and I think I tried them all. The swallowing was getting worse. Finally my GI had me scheduled for a manometry. WELL, if I had known the absolute torture that was going to be I would have never shown up that day! That was a year ago. After a major failed attempt I bid farewell to doctors. My husband was in Iraq during most of this and had no idea about the regurg until he came home once on emergency leave. After 6 months there, he finally came home and immediately made me go to the doctor. By the time he came home I had lost about 35 pounds and was often dehydrated. So finally in September I made and appointment again vowing to quit if the doctor made me get a manometry. He didn't. I had a EGD that didn't tell us much and then a barium swallow that showed the classic birds beak appearance at the bottom of my E. I looked at the doctor in the x-ray room and said 'That looks like achalasia to me " . (I knew this after a lot of Internet research of course). He looked shocked and told me he had never heard anyone say that word. Hmmmm. Anyway, this January, once the barium swallow got back to my GI, he confirmed achalasia. Since he did not have any experience with it, he referred me to a doctor in St. Louis - Dr. . That was a 126 mile trip from Fort Leonard Wood but I have good insurance with the military. He also prescribed me Procardia which he thought might relax my smooth muscle some. It is a high blood pressure medicine and even though I had low blood pressure already he thought it was safer than me starving and dehydrating (I had already gone to the ER a couple times for an IV to get fluids in me). Unbelievably the Procardia worked and I have been able to swallow as long as I take it before a meal for the last 5 weeks now! I can still feel the stick and I have about a 45 minute window to eat but I have gained back 7 pounds. I saw the specialist in St Louis on Friday and he did not have ANY experience with achalasia. But his partner a Dr Myers had done about 30- 40 myotomies. I didn't get to see him however , because he was doing a lung transplant. I was not real impressed with driving 2 hours for THAT....and especially because he wanted a manometry. YIKES!!!!!!!! NOOOO. I asked them about sedation and they said it was possible. Well that is where I am now - manomerty scheduled for next Friday. I don't want to do it because this Procardia is working. The problem is, I have had to triple my dosage for the same effect in only a 5 week period....is this bad? Does anyone else have experience with Procardia? And how do you get through the manometry? Also, is 30 - 40 manometries enough experience? I have the option of Dr Eubanks at U of Missouri Columbia as well....any one with experience of any of these docs? Please help - I don't know what to do at this point and am thinking about staying on the drugs until they don't work anymore - I am too darned scared of that manometry. I have read a lot on this site and know already what wonderful people you are so I really appreciate your time reading my mini-book. Any help or guidance would be extremely appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Kathie wrote: .... PLEASE be careful. If you have, on your own, tripled the dosage, that rings alarm bells for me. Perhaps I do not know what I am talking about ... Here is some info from pfizer.com. The information is about treating angina not spasms. DOSAGE AND ADMINISTRATION The dosage of PROCARDIA needed to suppress angina and that can be tolerated by the patient must be established by titration. Excessive doses can result in hypotension. Therapy should be initiated with the 10 mg capsule. The starting dose is one 10 mg capsule, swallowed whole, 3 times/day. The usual effective dose range is 10-20 mg three times daily. Some patients, especially those with evidence of coronary artery spasm, respond only to higher doses, more frequent administration, or both. In such patients, doses of 20-30 mg three or four times daily may be effective. Doses above 120 mg daily are rarely necessary. More than 180 mg per day is not recommended. In most cases, PROCARDIA titration should proceed over a 7-14 day period so that the physician can assess the response to each dose level and monitor the blood pressure before proceeding to higher doses. According to: http://www.emedicine.com/med/topic740.htm Esophageal Motility Disorders The adult dose to relax the LES is: 10-30 mg IR cap tid/qid 30 min ac; not to exceed 120 mg/d 30-120 mg SR tab qd; not to exceed 90-120 mg/d More than 30 mg in one dose is a lot. More than 120 mg in a day is a lot. I don't know about Procardia, but Procardia(XL) was never tested at doses above 180 mg/day. One should start with small doses and progress to higher doses only while being monitored by a doctor. The risk of hypotension is real and hypotension can be dangerous. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Wow, thank you so much for the information on Procardia. I have tried to find more info but did not have any luck. I woud estimate that I take 1-2 10mg pills at each meal - about 2-3 times a day. I don't think that is too bad. I have been watching my BP and it doesn't change that much. I am goint to watch it and not take a triple does anymore when I am having a particularly bad day. I just feel very lucky that it works for me as well as it does! Thank you for all your help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Hello : SEEEEE ... I told you there are very smart people in this group. Notan is one of them. I just KNEW someone would come thru. I just go with my feelings and intuition ... these people know how to make the computer sing and help all of us! Thanks, Notan .... Kathie from Pittsburgh > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 I appreciate everything. Thank you. Now if only there WAS a site as mentioned for the family. I spend a lot of time focusing on and talking about whether I can eat that day or not, how many times I regurg, how bad my spasms are, how many hours I didn't sleep, what I could get down and what would come back up, how dehydrated I feel, how tired I feel....sometimes it is all I can think about and talk about. It is amazing how a disease like this can consume you and almost define you. I am really working on concentrating on something else before my friends and family are completly sick of me (as if they aren't already!). My kids don't understand at all - they are 10 and 7 and only know that mommy has to get sick when she eats. Great, people probably hear them talk about it and think I am bulimic. Heck, my wonderful husband even asked me if I was sure I wasn't bulimic until he say me projectile vomit up something I had just eaten. (Sorry, I know that is gross, but we have all been there right?) I am a Girl Scout leader and a softball coach as well as a busy room mother for the kids so my disease often has to be shared with a lot of people when they are offering me snacks and such. I hate saying no to home baked goods at meetings or events because of A. Then I feel like I have to explain so that I don't hurt anyones feelings. I can't blame it on watching my weight because at 5'11 " and only 125 pounds they would definitely think I am mental!! Now while this Procardia is working is a good time for me to start concentrating on something else. Ya know, after writing this.....I just realized that almost 90% of my day (and yes, I work full time too!) is affected by this disease. I never really thought about it before. Heck, if I can make it through this, I will be able to make it through just about anything. It is amazing how just writing and sharing your thoughts helps. Thank goodness for people to share with that understand this 'freaky' disease! God Bless, > > Quote Link to comment Share on other sites More sharing options...
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