bellajulz Posted January 25, 2010 Report Share Posted January 25, 2010 I am in need of some opionions... I have suffered from Pots for about 15 months. I have been completely bed bound, to house bound to now partially functional as a normal person.. lol.. I am back to driving and can be out for about 2 hours or so at a time. I haven't fainted since November and consider myself on an "up" moment, since my health has been so up and down. I would say this is the best I have been since I first got sick.I am to go to Mayo clinic (Scottsdale, AZ) for some autonomic testing, which I will have to be off my meds for 24 hrs. and I believe another TTT. My new Neuro wants to see where I'm at see what options we can try so that I can be "fully" functional after new treatment. Question... Should I chance my new found "up" period for tests, when I am doing so well? I have put the testing off now for 2 months. I am pretty confident I will faint w/o my meds and usually a fainting episode sets me back about 2 weeks or so.. I also usually stop breathing when I faint, which of course is not good. My family thinks I should wait, I am torn. My LTD is up for renewal and I don't want docs or case worker to think I'm not intrested in treatment... Please help as I am scheduled to go this Thursday.... Quote Link to comment Share on other sites More sharing options...
wareagle Posted January 25, 2010 Report Share Posted January 25, 2010 Is there specific testing your Neuro wants you to have done that you HAVENT already had? It seems to me that if you're symptoms have improved your doc. wouldn't want you to come off any of your meds. I'd understand a bit more if the doc. wanted to test you while ON your current medications to see what if any adjustments need to be made to your treatment plan. Perhaps you could speak to your doctor and get clarification on why you would need to stop your meds...and what specific information they are looking for with this testing. It also depends on the meds you take. The midodrine is okay to stop suddenly...you could just take it after the test. I definatley would be hesitant to stop anything that has to build back up in your system to be effective. It's so hard to find balance with POTS treatment...I wouldn't want to "rock the boat". Good luck and keep us posted! Quote Link to comment Share on other sites More sharing options...
bellajulz Posted January 25, 2010 Author Report Share Posted January 25, 2010 Thanks for your response... I advised my Neuro of my concerns and that I was doing pretty good and was hestitant about the testing and the effect it could have on me. He advised that there was no rush (this was last month) but, that the tests could provide what part of my nerveous system wasn't working properly and would help with a better treatment plan overall. I have been on the same meds/dose for the last year, I just think that the "up" period is more of a coincidence then anything. I just don't want lose it. The only test I have had in the past aside for labs and CT/Mri's is TTT. This would be my 3rd time canceling at Mayo, I'm such a chicken.. I just know if I faint, it will definately set me back a few weeks... I am so reliant on my meds. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 26, 2010 Report Share Posted January 26, 2010 Bella, I just pm'd you let me know if you got it? Quote Link to comment Share on other sites More sharing options...
Nikki Posted January 26, 2010 Report Share Posted January 26, 2010 I felt the same way before I was diagnosed, actually. I have my periods of ups and downs..and whenever I wasn't feeling good, I didn't feel good enough to go anywhere..Doctor or not. When I was feeling better I didn't want to go because I didn't want to use up my good days at the doctor/hospital, doing things that I know would make me feel horrible again. I really think you should have the testing done though if your doctor seems to think it could help you even more in the long run. Maybe your tests won't go as bad since you're already feeling pretty good to start off. You have to do what you feel is best for you though. I wish you the best either way. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted January 26, 2010 Report Share Posted January 26, 2010 I've felt the same way because I have had tests that completely throw me for a loop with a several day or longer recovery. Maybe talk to the MD's office and let them know your concerns. Tell them if you are also concerned that the results won't be as helpful if they are collected when you are having a "good period". Sometimes it better to "leave well enough alone."~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
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