Becia Posted March 13, 2014 Report Share Posted March 13, 2014 I've been quiet lately, mainly because I just haven't felt myself, but I did get my TST test done at Cleveland Clinic this past Tuesday, and have to say, that was entertaining. I honestly thought I sweated a LOT, but I wasn't very purple at the end. Is it sad I didn't turn like a grape? I dunno. I was purple in areas I never thought about, like my kneecaps. How weird that my kneecaps sweated?! Well, weird to me.Although, coming up on Wednesday, that's the hard day of testing. I have to stop my medications on Sunday, no midodrine, no florinef, no allergy meds, for preparing myself for another TTT and a QSART test. I am TERRIFIED. Totally terrified. I'm potsy as it is on all of this stuff, and here I am going cold turkey on everything that makes it possible for me to sit up, stand up breifly, cook, be functional, not sneeze at every speck of dog dander and flower pollen. It was bad going off my allergy meds for the TST, but yeah... I'm really scared.I can't even wear my compression stockings before going to CC next week. I do plan to drink normally and do my salt stuff, as thats what I was doing before my last TTT when they made my diagnosis, but yeah... I've been off my midodrine for one day when they were getting a new script filled, and I was miserable. I'm not looking forward to three days of miserable.Getting my school stuff for next week done so all I have to do next week is my appointment, take care of myself, and rest. Just hoping all this will show the doctors what they need to properly treat me, or at least get me on my way. Quote Link to comment Share on other sites More sharing options...
amyksmith Posted March 13, 2014 Report Share Posted March 13, 2014 Hi -I'm sorry I don't have anything useful to say about preparing for going off your meds, et al prior to the QSART and a Tilt. I'd be scared too. Your plan to get things done ahead of time so all you have that week is the testing is a great one. Do whatever you can that soothes you and keeps you calm -- you know, as long as it doesn't require you to stand up or move around except like a snake on the floor.The best part about it is that, with not even too much time passing, it will be over and done. I'd try hard to focus on how relieved I'd feel after it was over. For me, sometimes, thinking enough about that feeling of relief that I know I'll get once a tough test or time has finished is enough to keep me mentally together and calm before it's over. If that makes sense.That purple TST is a real trip, isn't it? Kneecaps, tops of toes....if only it weren't so blinking uncomfortable, it would be curiously interesting.Good luck!! - Amy Quote Link to comment Share on other sites More sharing options...
Becia Posted March 13, 2014 Author Report Share Posted March 13, 2014 Lol, yeah, I got nauseous while I was in the hot box, and when I get nauseous, sometimes I get chilled. It was weird listening to Don Ho and going "please don't throw up" and shaking, lol. Quote Link to comment Share on other sites More sharing options...
amyksmith Posted March 13, 2014 Report Share Posted March 13, 2014 Ha! I had mine five years ago and I still cannot hear a certain Sarah McLaughlin album without feeling nauseated!! Quote Link to comment Share on other sites More sharing options...
Raisin Posted March 13, 2014 Report Share Posted March 13, 2014 Did you have a tech named Narkeytah? She is very nice and turned up Don Ho REALLY loud for me per request. The people next to us must have been wondering what was going on. Lol. Good luck with the med changes. I thought I would react much worse than I actually did so maybe there is hope. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 14, 2014 Report Share Posted March 14, 2014 Hang in there Becia! You are almost there. You will get some answers one way or the other. Quote Link to comment Share on other sites More sharing options...
Becia Posted March 14, 2014 Author Report Share Posted March 14, 2014 lol, nope, I had a tech named Kim who was super nice, and is actually going to be doing my TTT next week too, so she was getting me all sorts of prepared for how I need to get into the building, etc. I know what lowering my midodrine has done for me, so going off all really bothers me, but I know I will make through somehow. I just need to take care of myself. Quote Link to comment Share on other sites More sharing options...
gjensen Posted March 14, 2014 Report Share Posted March 14, 2014 Becia, this all good news. it is good to here. Just remember, you have to make a mess to clean a mess. Quote Link to comment Share on other sites More sharing options...
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