morgan617 Posted March 8, 2005 Report Share Posted March 8, 2005 I mentioned earlier that I was trying to get into NIH. They sent paperwork today and I was rejected because I don't faint. It's all about hypnosis, cold water on your hand and biofeedback. In case anyone is interested. It's only for ncs. morgan (I have now been officially rejected by everyone I think) My tombstone will say, I TOLD YOU I WAS SICK!!!! morgan Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 8, 2005 Report Share Posted March 8, 2005 Hi Morgan,I am sorry you got rejected from NIH. Don't give up hope with them. They will have other protocols later on and you can apply again. I am glad that they at least told you why you did not qualify. Ernie Quote Link to comment Share on other sites More sharing options...
JacobyD Posted March 8, 2005 Report Share Posted March 8, 2005 Hi Morgan.I can totally relate. I didn't get in to any of the autonomic studies either because I don't faint either and I never had much low blood pressure.I did go for a study on dysphagia (trouble swallowing) and it was wonderful. They finally validated me and confirmed I had some nerve damage and/or autonomic failure that was causing my problems. Phooey to all you psychologists and rookie neuros that told me it was "All in my head"!I am now about to go to Johns Hopkins to see if they can pinpoint the source of my problem and provide the proper treatment (besides just throwing pills at me that have made me sicker and I have built up a tolerance for)!Thinking of you Morgan. Hang in there! Your day will come,Dan Quote Link to comment Share on other sites More sharing options...
geneva Posted March 8, 2005 Report Share Posted March 8, 2005 Morgan, how outrageous to be told, in essence, you aren't sick enough for us! Sorry and I know this must be beyond frustrating for you. BTW, I have told friends that my tombstone should read, "I didn't KNOW" meaning that when something bad happens, I debate whether this is the time I should go to the dreaded ER or not because we all know what that feels like. So far, I have survived all the episodes but 1 day, I might make the wrong decision (LOL).Dan, good to hear from you again! Hope that things go well at Hopkins and the process of coming off the Ativan is going well for you. I am sure it is difficult.Hang in there Morgan. Oh, how did your talk with the PT go? Quote Link to comment Share on other sites More sharing options...
ETOLY Posted March 8, 2005 Report Share Posted March 8, 2005 Hi,You must realize that whenever a study is put together there are certain things that the researchers are looking for for that particular study. That is for ALL types of studies. I know that not all POTS studies are or will be looking to study people who faint. If you don't fit the qualifications for a particular study, there may be one that will come along soon that you will fit.Etoly Quote Link to comment Share on other sites More sharing options...
avais1 Posted March 8, 2005 Report Share Posted March 8, 2005 Oh, I am laughing so hard at the tombstone thing . When I was in Key West (before POTS obviously, as it has been rated the most humid city in the U.S.) there REALLY IS a tombstone in the cemetary that says "I TOLD YOU I WAS SICK". It belonged to a woman that the locals had written off as a hypochondriac. I guess she showed them . Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 8, 2005 Author Report Share Posted March 8, 2005 Dan, good luck at John Hopkins! Last year I had called NIH and they told me there weren't any studies for me at that time, but they were misinformed, so I missed the window for one I would have qualified for. I guess that's what upsets me. That they had one and I was misinformed. I actually wrote a letter to Dr. Robertson, and told him I didn't care how he felt about me, but he should be showing more courtesy to his peers. My doctor has been trying to talk to anyone back east with experience in this fun house that is our bodies. BTW, my bp has suddenly taken a nosedive and my pulse is going steadily higher, so maybe I will be fainting before long. Lord only knows with this body. A new wonderous surprise every day right folks! morgan Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 8, 2005 Report Share Posted March 8, 2005 Morgan, you had be laughing! Please keep this positive attitude though! We have to keep laughing and rolling with the waves! Let's add a research wing onto the dinet spa and you can be the first client in it morgan!!!best regards, tearose Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 8, 2005 Author Report Share Posted March 8, 2005 Oh man, if I didn't laugh, all I'd do is cry. Somedays you just gotta laugh. morgan Quote Link to comment Share on other sites More sharing options...
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