vinylowl Posted January 29, 2014 Report Share Posted January 29, 2014 Quick Background: Diagnosed with idiopathic orthostatic hypotension for the last ten years. Late August, I had some GI issues which caused my, seemingly, well controlled without medication OH to go haywire. My cardiologist wanted to work with my GI doctor as it seems the increase in symptoms was due to my GI issues. The last time I saw my cardiologist was in November and he prescribed me stockings, more water and more salt. He said he wanted to see me after my GI appointment in January.While I did get some inital relief with the stockings, they stopped working for me soon after. </background>I saw my cardiologist yesterday and let him know that I'm eating regular(ish) meals now, but the symptoms are still unbearable (I used to just get pre-syncope and, now I'm passing out 3-5 times a day). When I told him that the stockings weren't working anymore and pretty much stopped working soon after, he asked me why I didn't call sooner. Yesterday was a terrible, terrible brain fog day. I was literally having issues putting words together to form a sentence and kept apologizing to my doctor. My blood pressure was super high during my appointment (140/something) laying down and standing up, but he did finally notice that I get tachy after positional changes.He wants to give me Florinef or Midodrine, but he wants me to do a TTT first and the first available appointment for it is in....May. Great. So, I get to spend the next four months miserable and hoping I don't smack my head into things.Thank you for letting me rant. I'm just a little overwhelmed and frustrated. I understand my doctor's reasoning, but I don't want to wait four months to get some relief of my symptoms. Quote Link to comment Share on other sites More sharing options...
corina Posted January 29, 2014 Report Share Posted January 29, 2014 I'm so sorry vinylowl, that seems like a very long wait, esp when fainting so much. Though there's nothing I can do to make it easier for you I just wanted you to know that I'm sorry and I'm sending good thoughts your way. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 29, 2014 Report Share Posted January 29, 2014 So sorry and wish there was something I could do to make you feel better. Is there any way you can get on a waiting list for the test? If someone cancels out maybe they could get you in sooner. Keep going with the fluids and salt. You might even try a different type of compression stocking like thigh or waist high with more or lighter compression. If you can do some light exercise, this might help also. Hang in there and surely they will be able to get you in quicker for this test.Rachel Quote Link to comment Share on other sites More sharing options...
gertie Posted January 29, 2014 Report Share Posted January 29, 2014 I'm sorry vinylowl. I have syncope with my IBS issues. I'm curious if you have ever been tested for seizures? Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted January 31, 2014 Report Share Posted January 31, 2014 I wouldn't settle for that! I would try again to insist on a sooner appointment due to dangerous symptoms. I'm really surprised, the dr thinks it is ok to wait that long? Does he know? Then, maybe look into an alternate place to do the tilt table test. Or a different dr who can help without that test. My daughter is on Midodrine and Nadolol and she hasn't had the TTT. The cardiologist dx with his exam and blood pressure checks (Orthostatics).Good Luck!June Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 31, 2014 Report Share Posted January 31, 2014 I do not know why a regular standing test would not be enough for him until the official standardized test could be done. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted January 31, 2014 Report Share Posted January 31, 2014 Sorry you are having such a hard time. As others have already suggested maybe you could get put on a cancellation list, or ask your doctor if a Stand Test would be enough to get you started on medication before your TTT. I was diagnosed by a POTS specialist without ever having a TTT. I had two different length Stand Tests and lots of other tests, but I never had to have a TTT because the Stand Tests showed POTS. Four months seems like a long time to wait if you're fainting several times a day. I hope you'll be able to work something out so you can start medication sooner.Best Wishes,Lyla Quote Link to comment Share on other sites More sharing options...
vinylowl Posted February 17, 2014 Author Report Share Posted February 17, 2014 Quickie Update(I'm sorry it's been a couple weeks, work got CRAZY all of a sudden!)I got a call last week from the center that will be doing the TTT to schedule it. I was totally confused and so was the lady on the phone. She has zero clue why I was told May, but their next opening is almost mid March. So, in three weeks, I will be tilted.She told me to have someone drive me, just in case. They don't want me driving myself home (and the appointment's at 7 in the morning, so I don't want to drive anyways ).I guess you guys' positive thoughts really helped! Thankyouthankyouthankyou! Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted February 17, 2014 Report Share Posted February 17, 2014 I'm happy to hear you don't have to wait until May! Quote Link to comment Share on other sites More sharing options...
gjensen Posted February 17, 2014 Report Share Posted February 17, 2014 Good deal. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted February 18, 2014 Report Share Posted February 18, 2014 Yay, good for you! I'm so glad you managed to get a much closer appointment. Let us know how it goes. Quote Link to comment Share on other sites More sharing options...
TCP Posted February 19, 2014 Report Share Posted February 19, 2014 Sorry to hear about your problems. It's all about trying everything and anything until you strike lucky. I agree that the gut is the epicentre of all my problems.When my gut is bad then everything flares up. If I can get it calm then everything abates. I am currently getting more head and eye problems linked to my gut being bad. I shall be seeing my doctor soon in the hope that something can be resolved.Good luck with your health! Quote Link to comment Share on other sites More sharing options...
tachyfor50years Posted February 20, 2014 Report Share Posted February 20, 2014 Let us know how it goes. Good luck. Quote Link to comment Share on other sites More sharing options...
griffism Posted February 21, 2014 Report Share Posted February 21, 2014 If your doctor gives you the option, I would choose midodrine (taken 3+ times daily) over fludrocortisone because, in my opinion, midodrine has been the key to regaining some of my independence. Hope this helps Stefanie Quote Link to comment Share on other sites More sharing options...
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