masumeh Posted February 25, 2007 Report Share Posted February 25, 2007 Couldn't really read everything that came before this....but wanted to make a couple comments:they laid you down for 10 minutes only? I thought it was supposed to be 30. That's what my doc did and he specializes in POTS (his staff members are very sympathetic bc some of them have POTS too). also, your doc sounds impatient. Why did he give you a drug instead of just waiting? that's wierd.My TTT was really awesome, for me, and had a lot of consequences for my understanding of my disease. there was one very interesting part, a little heart thing on my head, afterwards the reading showed the blood flow to my brain. It was, at one point, at about 65% deficit (meaning my brain was getting only 35% of the blood it should). This explains a lot. And I remember the nurse asking me if I need to quit, and I was responding, "No, I'm not going to faint. This is a good day. I won't faint today." I estimate that my bad days get less than 30 or 20 percent of the adequate blood supply. It was decisive and I guess for that reason I'm lucky that my case is kind of on the severe end (like, at worst, I was bedridden, worst functional, fainted 5xs/day, now, and at the time of the TTT, only faint 1/week except when ill or on menses). last point I wanted to make--your episode is not that uncommon, so I don't think you should be too scared about it. We just don't die from this stuff, I guess...it just keeps going and eventually we come out of it. My episodes sometimes last an hour or more. Peace,Masumeh Quote Link to comment Share on other sites More sharing options...
Tessa Posted February 26, 2007 Author Report Share Posted February 26, 2007 Thank you for your comments, Masumeh The Cardiologist is no specialized in POTS. Maybe he was a little impatient and he should have waited, but he has showed to be willing to help as he had no idea about POTS on our first app. and he knew a little more on our second (therefore, I think he has been reading about it). I have no other option right now, because I have been unable to find a cardiologist who knows about it... Of course, it was a horrible experience and with a scary result, but at least it is over now.I am looking forward to meeting him tomorrow (Tuesday) and will ask a copy of the full report.I see that your TTT was carried out much better than mine. They did not check the blood flow going to my brain... I am glad that you were able to know.Not that I am scared about what happend to me, but worried because It took more time to regain consciousness when tilted down (horizontal)...Let?s see what the data show tomorrow.Take care,Love,Tessa Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted February 26, 2007 Report Share Posted February 26, 2007 Hi Tessa, What time is your appointment tomorrow?Wishing you luck! Quote Link to comment Share on other sites More sharing options...
Tessa Posted February 26, 2007 Author Report Share Posted February 26, 2007 I am looking forward to my full TTT report, Mack's Mom (though I know it will not be easy to get the full report, as they usuall only give you a copy of the results; I mean, positive or negative).The Cardiologist also mentioned I should try a fludrocortisone & Midodrine, together with the beta blocker... But waid we will talk on Tuesday about it (tomorrow).Will share the app. with all of you.Thank you for your answers. They have all been very useful.Love,Tessa Quote Link to comment Share on other sites More sharing options...
Tessa Posted February 26, 2007 Author Report Share Posted February 26, 2007 Hi Tessa, What time is your appointment tomorrow?Wishing you luck! Thank you, AmbyWell, in fact, he did not give me a time, but just said to come along - adding he would be there for the whole morning... I will have to wait until he has a vacancy...Love,Tessa Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted February 26, 2007 Report Share Posted February 26, 2007 Oh...well I hope they can get you in soon and your wait is min. Is he busy? Is that why he didn't give you an appointment? Or are they going to have a nurse go over the results with you? ( I got the NP most of the time with my old office ) I know you mentioned wanting the results of your TTT and they should give you the readings if that's what you ask for. I have mine for the first TTT I had. Quote Link to comment Share on other sites More sharing options...
Tessa Posted February 26, 2007 Author Report Share Posted February 26, 2007 The Cardiologist said that after the TTT he would have a meeting with us in order to talk about the results and the treatment, but on Monday, after the TTT he was so nervous (because I was not recovering)... That when I was feeling slightly better, he turned me away and said to go home, to rest and to drink plenty of fluids... It was my husband who entered the room, after I had left, and asked him what to expect next. My husband told me later that he seemed to be nervous and aware that he should have told us something... Then he said to visit him on Tuesday and that no app. was needed as he was going to be there for the whole morning... Adding we would talk about a treatment...The app. will be held at a different Hospital to where the TTT was carried out, that?s why I wonder if I will be able to get the full report straight away... Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted February 26, 2007 Report Share Posted February 26, 2007 I'm glad you found someone willing to work with you even though he doesn't understand that much right now. I hope whatever treatment they go with works for you. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted February 27, 2007 Report Share Posted February 27, 2007 good luck to both of you with appointments tomorrow. i actually have one too, though i'm not at the diagnosis/ TTT stage that you do so other than the ordeal of us getting me there it's not as big of a deal.but tessa, i just wanted to reiterate what others have said about not being too concerned about your reaction/decline following the tilt. i've had several and always do poorly after to varying degrees. it does bother me though that you were given meds so early, but obviously that's not your fault at all so try not to worry about it! regarding diagnosis, many docs have different opinions on the names of things and what the actual criteria are, whether someone can have more than one diagnosis, etc. ultimately many of the treatments used are the same, so initially as long as you receive a diagnosis of one of the more common types of autonomic dysfunction (NCS, NMH, POTS, etc) it probably won't matter too much what name it is given. you may want to get more clarity at some point or you may not, but you can make that decision later.hope things go well for you tomorrow, melissa Quote Link to comment Share on other sites More sharing options...
Tessa Posted February 27, 2007 Author Report Share Posted February 27, 2007 Hi Melissa Thank you for your answer. I hope you are feeling better.My app. as I have mentioned on another new post has been very positive. You were completely right on your post. It is more important to get a treatment (similar for all types) than to get it named, though he seemed to be confused about the types and terms he mentioned that I have POTS - Vasovagal Syncope... (please, take a look to my post "TTT results"). It is a relief to see that we all have such a reaction and decline after the tilt, because at first, I thought that my symptoms were worse and would remain that way. But I am feeling better now, far better than on Monday and Tuesday (last week)... thank you for caring about me.Love,Tessa Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.