blackwolf Posted September 17, 2004 Report Share Posted September 17, 2004 So many of you have been where I'm going now and I know I'm just repeating most everything but...Things are really getting bad for me. I am trying to go see Dr. Benditt in MN. My cardio wants me to go to the hospital for a few days for testing. I'm having trouble sleeping, eating, moving(really close to blacking out) and tachy is back. I had started a new drug(theophylline) and was doing better then about 2 weeks ago I noticed my symptoms were coming back with a vengance. I also have really bad visual trouble. flashing lights, and "shooting stars".I'm so tired of being bounced form doc to doc. my gp thinks I'm nuts, my cardio says he only does the cardio/bp stuff.I'm exausted and nausiated, can't hardly type. Bp an hr running low.All i'm on right now is Proamatine, theophylline and toprol xl. I also take mag. lactate, vitamin b. and reg. vitamins, also 325mg asprin daily. I cannot think straigt even to remember if i put on deodarant after my 5 min(to lightheaded for more) shower. Why me, why now.Thanks for letting me rant and rave Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 17, 2004 Report Share Posted September 17, 2004 Hi Blackwolf,I can relate to your situation. What helps me when it happens it to remember that I will have good days again. Sometimes it will last for weeks and suddenly I come out of it.I think it is a good idea to go to the hospital for the testing. The more you know about your body the more chances you have of getting out of the crash fast.Some doctors prefer to say that we are nut case than to admit that they don't know what we have. I highly respect a doctor who will admit to me that he does not know what I have.Good luck,Ernie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted September 17, 2004 Report Share Posted September 17, 2004 I sure do feel for you! Finding a doctor to coordinate all the facets of care we require seems a bigger challenge than just living with this disorder... I hope you find the help you need! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 17, 2004 Report Share Posted September 17, 2004 sorry you are going through this. the crashes just suck. i can't get the energy to clean my house and i'm telling you, it's bad. i've been showering every other day for the same reason, now i've gone three. i wish i could help you. maybe you should go into the hospital, because at least they are trying something. have they checked a theophylline level? that may be a place to start, because it's a drug you can easily get toxic on. maybe just start there. best of luck, morgan Quote Link to comment Share on other sites More sharing options...
blackwolf Posted September 18, 2004 Author Report Share Posted September 18, 2004 Thank you all! I'm managing to hold on now. i guess i'm a little down. i'm really missing out on my kids' playing outside and all. All could do was watch out the window. Just taking the dog for a "walk" is almost too much.Morgan, on my cardio's advise i'm stoping the theophylline. he is worried that i might have picked up a new "bug" as school just started. there seem to be a lot of just feeling yuk going on.Again, thank you all!I know things will get better and I hope and pray that i can just get there.I just cannot get to sleep, i just lay there and stair at the ceilling.AAAAAAAHHHHHHH!!!!!! OK, now I feel a little better. Blackwolf Quote Link to comment Share on other sites More sharing options...
DawnA Posted September 18, 2004 Report Share Posted September 18, 2004 Sorry your are feeling so poorly, my heart goes out to you. Maybe you are on the wrong combination of meds. It took a long time to find the right ones for me. So frustrating. I know. Topral was awful for me. It made my HR and BP so low. I could not function. Hang in there. Dawn Quote Link to comment Share on other sites More sharing options...
ethansmom Posted September 19, 2004 Report Share Posted September 19, 2004 Hope you feel better soon!! We're here for you and will be here to cheer you on when you start feeling well again. The ups and downs of this illness are by far the most frustrating part of the deal, but thankfully the ups *usually* follow at some point Keep smiling and remember...this too shall pass... Quote Link to comment Share on other sites More sharing options...
JLB Posted September 19, 2004 Report Share Posted September 19, 2004 Just wanted to offer my support, Blackwolf. Ethansmom is right - this will pass. Quote Link to comment Share on other sites More sharing options...
Brwneyedchica Posted September 19, 2004 Report Share Posted September 19, 2004 I'm sorry that you feel so crummy right now. I just wanted to reiterate what everyone else has said, the "ups" follow the "downs." After being diagnosed with POTS I was fine for 3 years until this June. Then I was sick all of June, and all of July. I've been kind of doing more everyday and building myself back up, and will go back to work fulltime next week! Just keep the faith, I know it's the hardest when you are sick and things look bleakest, but you've gotta keep that chin up! Quote Link to comment Share on other sites More sharing options...
glimmer Posted September 19, 2004 Report Share Posted September 19, 2004 I just wanted you to know that I understand how it feels to be in the position of "looking out the window". Even though I just had a major crash I know deep down that I always work my way back slowly but surely from crashes. I keep a journal and I can read back to find the proof of this. But sometimes it helps to be reminded by others that if we do the "right things" for our own individual situations we will make our way back to our "baseline". Anyway I just want you to know I understand how you are feeling and I will say prayers for you that you will recover sooner than later from your "crash".Glimmer Quote Link to comment Share on other sites More sharing options...
blackwolf Posted September 21, 2004 Author Report Share Posted September 21, 2004 Again, thank you all.Just a note, I have stopped the theophylline. It's been about 4 days now and I still don't feel any different. BlackwolfHangin' in, hangin' on hangin' out, ect.... Quote Link to comment Share on other sites More sharing options...
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