lloppyllama Posted March 31, 2009 Report Share Posted March 31, 2009 Hello everyone,I hope that you are all doing better than I am. My health has been deteriorating these past two years quite a lot. I now am no longer able to stand up for more than a few seconds with out fainting. All of my symptoms have become very severe, and I can no longer function normally. I am on all the meds, and I do high salts and fluids, along with exercise...my doctors just dont know what to do anymore! I go to mayo, so its not like I dont have a great team working for me. I would apprechiate any ideas that people have of why I am getting sicker, and what I could do to make it get better. I am also wondering if since I have never started to improve from when I started treatment, if maybe I will be one of the teenagers who doesnt grow out of it. I really hope that I will, but I just am starting to lose hope that I will get better...maybe I am in the 20 percent who dont get better...Thanks for any help, or really just any encouragement as well, my spirits are starting to fade, Thanks!-Mary Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 31, 2009 Report Share Posted March 31, 2009 Mary,I'm so sorry to hear about your troubles. Just a couple of tricks my doc at Mayo recommended because I'm a fainter, too. Raise your headboard 4-6 inches so that you sleep at a slant. Take your Midodrine before getting out of bed in the morning. You need up to 10 GRAMS of salt a day - way more than I had been taking! The more lower leg exercises you can do, the better. If you stand up and feel like you're going to faint, cross your legs hard or bend over and put your hands on you knees and grasp hard. How much Mido are you on? And drink plenty of electrolytes (Gatorade, etc).I hope that perhaps one of these suggestions are new, and that they help you...Peace,Jana Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted March 31, 2009 Author Report Share Posted March 31, 2009 I take 10 mg midodrine 3 times a day. I will have to try the bed thing, I tried that once and I really didnt like it because it felt so strange! How do you get that much salt....I tried salt pills once, but my stomach couldnt handle them...I think I might try them again though...I'll wait till the weekend so I dont get stomach upset at school. Thanks for the help! -Mary Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted March 31, 2009 Report Share Posted March 31, 2009 I'm sure you're probably doing this all ready, but...When I was singing in a choir, we were always told to constantly be shifting position and flexing our leg muscles so we didn't pass out. I do this sort of thing now when I have to stand for more than 30 seconds. It really does seem to help get more blood up to my brain. Best wishes and I hope you feel better!!!Sara Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted March 31, 2009 Author Report Share Posted March 31, 2009 Its weird becuase when I flex my leg muscles it instantly makes me faint...its so strange since thats what is supposed to help...but I do it when I am sitting down. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted March 31, 2009 Report Share Posted March 31, 2009 I take buffered tablets, and just salt the heck out of my food. I don't get near 10 grams, though. I get mine through my pharmacy, or you can also get them online. Make sure they're buffered!peace,janaa Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted March 31, 2009 Report Share Posted March 31, 2009 i just started hydration therapy and it has helped sooooo much. Its amazing i do have a PICC line but its not like i do anything strenuous to begin with so it has been a life saver. Really look into it, even though its used as a last resort. I had to persuade my cardiologist to let me have it for 6 months.Hope you get better soon! Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 31, 2009 Report Share Posted March 31, 2009 Have you been tested for MSA (Multiple Systems Atrophy) aka SDS (Shy Drager Syndrome) Might want to do that if you can no longer stand.Hope you have a doctor to investigate this.Here is a link but you have to jump through pages for info.http://www.mayoclinic.com/health/shy-drager-syndrome/DS00989Also do you have HIGH BP when lying flat...that can be part of this.SDS is where elevating the bed while sleeping can help. UNLIKE those with low BP while supine, who elevate head of bed and feel WORSE.I hope you do not have this version but worth investigating. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 31, 2009 Report Share Posted March 31, 2009 P.S. Here is somebody asking difference in Pure Autonomic failure and SDS. Hope this helps too.It all gets confusing when diagnosis overlap! http://www.medhelp.org/perl6/neuro/archive/12877.html Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted April 1, 2009 Author Report Share Posted April 1, 2009 Oh man, I hope it isnt SDS...I am going to the doctor tomorrow in the morning, so hopefully we can find something. Has anyone ever been checked for adrenal gland issues? I am also wondering if it could be that.Thanks for all the help!-Mary Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted April 1, 2009 Report Share Posted April 1, 2009 HeyI just clicked on your profile!! if you are just a teen ager it's HIGHLY UNLIKELY you have SDS!!Could be a hormonal thing. Sorry if I scared you I just had no idea if you were a man or woman..and when I saw your age I thought "HOLY SMOKES". they do not have SDS..that hits people usually in their 50's!!Keep us posted on your doctor visit though.Good luck Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted April 1, 2009 Author Report Share Posted April 1, 2009 oh good thanks! I figured i didnt have it since i was so young and its usually 50 year olds...thanks for writing back about it -Mary Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted April 1, 2009 Report Share Posted April 1, 2009 Mary,I'm so sorry to hear about your troubles. Just a couple of tricks my doc at Mayo recommended because I'm a fainter, too. Raise your headboard 4-6 inches so that you sleep at a slant. Take your Midodrine before getting out of bed in the morning. You need up to 10 GRAMS of salt a day - way more than I had been taking! The more lower leg exercises you can do, the better. If you stand up and feel like you're going to faint, cross your legs hard or bend over and put your hands on you knees and grasp hard. How much Mido are you on? And drink plenty of electrolytes (Gatorade, etc).I hope that perhaps one of these suggestions are new, and that they help you...Peace,Jana When I went to Mayo they told me to put salt on my food rather than using salt pills. Apparently food helps the body absorb the salt better. Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted April 1, 2009 Author Report Share Posted April 1, 2009 Well I put as much salt as I can on my food, but its not 10 grams, that is like 10 tablespoons a day! I put so much on there that my mouth constantly has sores in it from so much salt...I wish that there was an easy fix for this!Thanks for you suggestions!-Mary Quote Link to comment Share on other sites More sharing options...
Lenna Posted April 1, 2009 Report Share Posted April 1, 2009 Well I put as much salt as I can on my food, but its not 10 grams, that is like 10 tablespoons a day! I put so much on there that my mouth constantly has sores in it from so much salt...I wish that there was an easy fix for this!Thanks for you suggestions!-MaryMary, keep in mind that 10 grams of salt is about 4.5 grams of sodium. My son doesn't like to salt his food, but he likes salty food, if you follow my drift. He likes food made with canned tomato sauce, tomato soup, lox, chicken broth, chicken nuggets, things like that which have a lot of salt. I doubt he gets up to 4 or 5 grams of sodium, but he gets pretty close some days.Good luck, Mary. I've been following your posts for a long time now because you're my son's age and I think you're incredibly smart and articulate. I'm so sorry that you're losing strength and hope; I hope that this is temporary and you'll be seeing improvements soon. How have you kept up with school?Please hang in there. Lenna Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted April 1, 2009 Report Share Posted April 1, 2009 Let us know how your doctor's visit went.I am also so sorry you are dealing with this at such a young age! Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted April 1, 2009 Author Report Share Posted April 1, 2009 My visit went well. My doctor is having me do another TTT to see if things have changed at all. Then they are running tests to check my thyroid and checking for tumors on my adrenal gland, or in other areas that could cause my symptoms. I''ll let you know what the results are. I am also meeting with my neurologist and a cardiologist to see if they have anything to find in my heart or brain.Thanks again everyone!-Mary Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted April 2, 2009 Report Share Posted April 2, 2009 Good to see the doctor is expanding more bases to investigate. Glad you had a good visit.Hear's to hoping you have improvement SOON!! Quote Link to comment Share on other sites More sharing options...
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