gwen

I'm so sorry for your sudden loss. Please think of a really good thought of her and hold onto that.Remember she would not want you to become more ill because of this. Take care of yourself.

happy bday! hope the blessings you share with us are returned in the coming year. Hope you get the corner piece of cake:-)

so glad to hear such good news! sleeping in is the frosting on the cake!:-)

I get a trembly feeling from my collar bone to my waist "inside". I have no idea what causes it.

about the only pharmacy around is Walmart and is only cheap one. I oterwise try not to shop there because of business practices. Any way, When I picked up my Midordrine it was over 60.00 and I asked what the price was without ins and they said about 650.00. I do thank goodness for good insurance. But when my dr. tried me on lunesta she gave me about a month's worth. It didn't work for me but the drug rep was in her office on my last visit and I saw him give her two big boxes of it! My doc is always good about giving lots of free samples even though I've told her we have ins. and to keep it for others. She is so ticked off a medicine in general, Dr.s and drugcompanies greed. Long story short I know the giveaways are there and there are programs thru the drs office if you can't pay that the drug companies give "samples" What about Mexico? good luck!

just the slightest whiffof alchohol makes me nauseous now. This summer the thought of corn or green beans do it. I don't know if its the meds that changed or metabolism.

Last year I started going to a Dr. who specialized in people who could not get diagnosed. He laughinly says he is the 5-6th dr you see, not the first. He felt strongly about chelation so I did have it done, expensive. I asked my dentist first. Went to high school with him and he is probably the last person I would have thought was concerned with "different" ideas. He said he had all his old fillings out and amalgams put in. strongly belived in it. I chose not to have the old ones out, as they age I'll have them replaced. unfortunately I don't think I had any reaction good or bad to chelation. did speak to a lot of people at clinic who had had it done and swear by it. I also get asked about it from people who hear thru the grapevine that I've done it. Like everything else I think some people are sensitive to it and others aren't. hope this helps:-)

Have you ev er had your thyroid tested? my temp has always been low and cold with chills. When the weather changes sometimes you have to have your thyroid meds adjusted too.:-)

Don't you just wish you could get your time and money back when the tests come back normal and yet you know and its obvious there is something very wrong. Its nice when they say yes this odd, but if they would just come clean and say" **** if I know whats going on, you need to see Dr. so and so for some real answers, because I am obviously overpaid, undereducated and have a huge ego problem which does not allow me to admit I don't know **** about anything." I'm gonna tell one of the coats that sometime. its just a matter of time. :-)

There is no better place than a library. unless its a book store. :-) That is home.

I have wanted to do an online Librarian Masters Degree for years but just don't have the energy. I have one at univ and a senior in HS so don't know How I could swing it $ right now anyway, so I'll just root for you and like most things , they get done. good luck!:-)

I can't stand for very long, but sitting in the pew at mass just about does me in. I can't get up and down all thru mass so I half sit half kneel. I m always short of breath but never put it together. even as a kid I had trouble sitting straight. Slouched. If I try to stand straight within 5 min i 'll pass out. :-)

well I called at first and they said I had to be referred by my dr. and chart sent up. We did that and then got the form letter. My Dr tried to get the Dr to Dr conference call but they wouldn't. She thinks they wouldn't see us because I'm already doing all that can be done and she may be right, but there is still in my mind that someone might have a trick or two we dont know. I know I won't be cured. Going to Mayo would make some in the family and community realize I'm not just making this up. Avery expensive way in dollars and energy. Good insurance, no problem there. I just don't know. Sometimes I feel like i'm just thinking about it too much and I should just roll up into a ball.How do you do this with kidsand a husband? I have a lot of friends but they seem to have floated to the background because I can't just pick up and go play reindeer games. They are good people but sometimes I think having a broken bone with blood spurting out would make the doctors, family, and friends relate to all this easier.Thanks:-)

I appreciate your posting so much. The wallpaper in my middle bath has been down for 5 months. don't have the energy to put it up,muchless get on a ladder. My mother in law keeps asking to come down and put it up. NOOO! It is terribly hard in a small town to be sick and people not gossip about you especially about being lazy. I used to out do Martha Stewart. This site is making a believer out of my husband. He is concerned about me, but I don't think he understood the depth of it all. Thank you!

I was on florinef several years ago. it did not help at all and I gained a lot of bloaty weightaround my tummy. it went away when I stopped taking it.:-)

Lauren, what dr. did you see and what phone number did you call? I 'm afraid to just show up and then not be seen. I'm willing to do anything at this point.:-)

What do you have to do to get into Mayo?? I feel like a total reject. My Dr. sent my file (a novel) and requested a referrel for me. They sent me a form lettersaying it would not be possible at this time. I called and asked when would it be possible please and they said they did not make appointment for over a year!! My Dr. was just irate. There is no one in St. Louis that I know of that is working on this. While I am not as severe as many of you I read, I am getting worse. I would like to see someone before a crisis. I am now considering Dr. Grubb but he is 6mo. out? What does a person do? I am doing everything now, could this be why Mayo wouldn't see me? gracie78

I was on Celexa for anxiety a few years ago before my recent diagnosis with NMH and POTS. I didn't think it helped at that time. More recently I read that it might help and asked my doctor if we could try it. I don't know that it is helping. I am not having a problem sleeping, just getting to sleep. I am new to this forum and so I'm not sure what others have already said about it. So much is trial and error. I hope it does help:-)

Hi my first input on POTS. Have struggled for 2 years but really all my life just no one would diagnose it. Have you tried humidifier in room? really helps sinus' (furniture too:-)) in winter. Migraines are a witch. I don't know how you can write. I can not take pain meds. make me nauseous so I rely on Percogisic over the counter. Makes me a little sleepy too. has a muscle relaxant in it. Can get it at Walmart. (Of course if you felt good you could) I am concerned with the thirst and not peeing. Please don't wait too long to go to hosp. I too have problem with veins. usually can't get pulse. hang in there. it will get better. I will pray to St. Anthony for you. Gwen