Sunshineoo77 Posted December 5, 2005 Report Share Posted December 5, 2005 Hello There..... I' very new to this POTS thing..... I just got dx with it this past month. I have had some of the symptoms for awhile, but the harder to deal with ones ....like severe diarrhea, very low bp, dizziness, anxiety, fatique, vomitting...etc....those have become more prodominate the past 2-3 years and it has taken them....(doctors all over the southeast US) to finally figure a dx....and now a lot fo the symptoms that I had kind of ignored before, now all make since. For instance,I also have diabetes type 1 and have an allergic reaction to the insulin... severe swelling all over from face to toe...so I would simply write those symptoms off to that instead..... like the purple legs and hand and feet...and swelling for instance.....now it all makes sense....Anyway, my biggest concern I guess is the diarrhea .... and financial..... does anybody have any suggestions for what to do for a liviing..... and/or what has worked for you about the severe diarrhea. Mine is really bad and had been life changing. I was an extremely active fit chic....but now I have to wear diapers, have accidents....etc.....lost my job...was a very sucessful legal assistant...worked and protected problem kids..... but high stress also caused me to have to quit..... anyway....they have had me on everything from Euthormyacin to lotronex to sandostatin...... nothng, so far, seems to work.... I have been tested for everything from cancer to celiac to chrohns .....any suggestions.... this really is hard...... I have been reading some of your posts, though,...and it has helped....I have been dealing with this alone for 2-3 years now....slowly losing every aspect of my life..... it has been nice reading your posts....Does anyone have any suggestions about the diarrhea ...... and what do you guys do for a living? thanks for any help...sorry sooooo long..... not feeling well ....and not being very articulate....thanks for understanding...Sunshine.... Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted December 5, 2005 Report Share Posted December 5, 2005 Others may have more info re diah, but my doc gave me meds to help. I definately think you are SSDI shoe in. Witht the problems you have. See if an attorney can help /or prepare the paperwork. Welcome and good luck. Miriam Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted December 5, 2005 Report Share Posted December 5, 2005 Just wanted to say welcome! Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted December 5, 2005 Report Share Posted December 5, 2005 My husband has Neurocardiogenic Syncope (NCS) and as part of that he was losing control of his bowel & bladder - his body seemed to just flush out anything it had. Most of the time he was completely fine and then WHAM. His cardiologist referred him to a urologist who ruled out other causes and diagnosed him with Neurogenic Bladder. He told us that while he didn't think he would be able to stop the episodes, he did think he could buy him some time (hopefully 15-20 minutes) and he thought that it might help with the bowel as well. He prescribed Detrol LA and IT HAS WORKED WONDERS! Of all of the symptoms he has had, this was the poised to be the straw that broke the camel's back. He has been on it since June and as promised, while he still may have an episode he has had time to deal with it. His only side effect has been severely dry mouth but recently he was started on Mestinon and the dry mouth seems to have eased as well. If you do a search in this forum on "incontinence" you will see my previous posts (mainly because I can never remember how to spell diarrhea). If you read into the details of Detrol you will find that it is a smooth muscle anti-spasmotic and I believe both the bladder and bowel are smooth muscle. This has been a wonder drug for him and may be worth consulting with your doctor. Quote Link to comment Share on other sites More sharing options...
Sunshineoo77 Posted December 5, 2005 Author Report Share Posted December 5, 2005 My husband has Neurocardiogenic Syncope (NCS) and as part of that he was losing control of his bowel & bladder - his body seemed to just flush out anything it had. Most of the time he was completely fine and then WHAM. His cardiologist referred him to a urologist who ruled out other causes and diagnosed him with Neurogenic Bladder. He told us that while he didn't think he would be able to stop the episodes, he did think he could buy him some time (hopefully 15-20 minutes) and he thought that it might help with the bowel as well. He prescribed Detrol LA and IT HAS WORKED WONDERS! Of all of the symptoms he has had, this was the poised to be the straw that broke the camel's back. He has been on it since June and as promised, while he still may have an episode he has had time to deal with it. His only side effect has been severely dry mouth but recently he was started on Mestinon and the dry mouth seems to have eased as well. If you do a search in this forum on "incontinence" you will see my previous posts (mainly because I can never remember how to spell diarrhea). If you read into the details of Detrol you will find that it is a smooth muscle anti-spasmotic and I believe both the bladder and bowel are smooth muscle. This has been a wonder drug for him and may be worth consulting with your doctor. Thank you very much for your info....that is actually a drug they haven't tried. I will definitely look into it! Thanks again Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted December 6, 2005 Report Share Posted December 6, 2005 Good Morning Sunshine, I have the oposite problem, I dont get diahrea (sp) I stay constipated severely. I am on senocot which helps when it wants to. Also my husband works 2 jobs to pay the medical bills, and I have applied for SSI. It is frustrating so I hired a disability group that specializes in SSI. All I have to do is fill out the paperwork that they send me and they do the rest of the work. I could not do this by myself, and I know it. So far they have got it overturned where the SSI dept said that I had not worked enough in my life for SSI. I just recently recieved paperwork from the SSI dept to fill out, so I know that it is still a go. I would talk to my doc about the diarrhea problem. Hopefully there is something that he can give you to help you out. Also WELCOME to our little support group, its a great place to be when you are in a position as all of us are. Mrs GlassHello There..... I' very new to this POTS thing..... I just got dx with it this past month. I have had some of the symptoms for awhile, but the harder to deal with ones ....like severe diarrhea, very low bp, dizziness, anxiety, fatique, vomitting...etc....those have become more prodominate the past 2-3 years and it has taken them....(doctors all over the southeast US) to finally figure a dx....and now a lot fo the symptoms that I had kind of ignored before, now all make since. For instance,I also have diabetes type 1 and have an allergic reaction to the insulin... severe swelling all over from face to toe...so I would simply write those symptoms off to that instead..... like the purple legs and hand and feet...and swelling for instance.....now it all makes sense....Anyway, my biggest concern I guess is the diarrhea .... and financial..... does anybody have any suggestions for what to do for a liviing..... and/or what has worked for you about the severe diarrhea. Mine is really bad and had been life changing. I was an extremely active fit chic....but now I have to wear diapers, have accidents....etc.....lost my job...was a very sucessful legal assistant...worked and protected problem kids..... but high stress also caused me to have to quit..... anyway....they have had me on everything from Euthormyacin to lotronex to sandostatin...... nothng, so far, seems to work.... I have been tested for everything from cancer to celiac to chrohns .....any suggestions.... this really is hard...... I have been reading some of your posts, though,...and it has helped....I have been dealing with this alone for 2-3 years now....slowly losing every aspect of my life..... it has been nice reading your posts....Does anyone have any suggestions about the diarrhea ...... and what do you guys do for a living? thanks for any help...sorry sooooo long..... not feeling well ....and not being very articulate....thanks for understanding...Sunshine.... Quote Link to comment Share on other sites More sharing options...
Sunfish Posted December 6, 2005 Report Share Posted December 6, 2005 just wanted to add my welcome. sorry that you have reason to be here but glad you found us. i like your name - my name (sunfish) is actually a combo of two nicknames i've had for ages, sunshine & fish i'm actually "sunshine" myself on another forum. anyway, i can't offer anything too specific on the GI stuff as i'm on the other end of the spectrum (most of my body is too slow, GI & otherwise) but there are lots of others who i'm sure can.financially & work-wise it's tough. while i've been sick/diagnosed for years i was able to maintain full-time work after college until about a year ago when my body really took a nosedive. i was fortunate enough though to have been working in corporate america where i had short & long term disability coverage so for the time being i've been able to get by with that, perhaps most importantly for the health insurance. they required me to apply for SSDI as well though so i'm waiting on that as well; it's quite a lengthy & tedious process as many can attest too. i tried to start grad school full-time in the fall to no avail & am now struggling to manage a half-time schedule. so it's definitely tough. there's no way i would be able to work full time or even a regular part time schedule with how i'm doing these days. there's a large variety of what people can do though on the forum and it often changes over time in both directions.hang in there, melissa Quote Link to comment Share on other sites More sharing options...
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