CallieAndToby Posted March 23, 2021 Report Share Posted March 23, 2021 So after waiting 8-9 months, Vanderbilt has contacted my referring neurologist about doing blood pressure testing on 3 separate dates. However, nobody can tell me whether or not I need to stop my autonomic medications like when you get a TTT, does anybody know? My blood pressures have actually been fine lately but that has no stopped any seizing or blacking out so I'm kind of worried it will be normal. My neurologist's nurse has contacted me about doing this so I'd like to! It'd be nice to be at an actual facility where they can do a lot of testing. And they can refer me to other doctors as needed, which is needed. My latest CBC showed: high blood platelets, low MPV, and high IG%. Thanks. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 24, 2021 Author Report Share Posted March 24, 2021 So according to 2 Vanderbilt patients on FB I'm supposed to get off any autonomic medication for 3 days prior. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 24, 2021 Report Share Posted March 24, 2021 @CallieAndToby22 - I would have the nurse for the neurologist that will be doing the BP measuring check with Vandi if they indeed want you to hold the meds. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 24, 2021 Author Report Share Posted March 24, 2021 6 hours ago, Pistol said: @CallieAndToby22 - I would have the nurse for the neurologist that will be doing the BP measuring check with Vandi if they indeed want you to hold the meds. Yes that's the best idea. Other patients are saying they were never told or their providers were never told what to do either. So I will ask her to contact them. Thanks. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 25, 2021 Author Report Share Posted March 25, 2021 So the nurse has been "debating" with me about taking medications but finally called them.... She also doesn't know how to do a basic poor man's TTT. It's very frustrating. And I'm pretty sure they need more than just my blood pressure but my HR too. On a side note, I'm having great difficulty sleeping, I tend to get very relaxed then open my eyes hours later to discover I haven't even fallen asleep. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted April 7, 2021 Author Report Share Posted April 7, 2021 Alright so many people are wondering about this, so I'll give an answer. We never got a return phone call but I emailed the research team (accidentally) and they told me to at least skip the evening dose but preferably they want any medications/supplements affecting the autonomic nervous system (blood pressure and heart rate) out of your system. So going by the half lives of my meds I needed to get off of them for 3.5 days before any testing. One of them had a really really long half life so there wasn't anything I could do but I still discontinued it for testing purposes. Quote Link to comment Share on other sites More sharing options...
Pistol Posted April 8, 2021 Report Share Posted April 8, 2021 @CallieAndToby22 - I had to stop my meds 3 days before my TTT. Granted - I was not on many meds back then but it still got me sick as a dog without them. I am not sure if I could do that today - I am on a lot of meds that should not be stopped abruptly. Not sure about yours. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted April 8, 2021 Author Report Share Posted April 8, 2021 19 hours ago, Pistol said: @CallieAndToby22 - I had to stop my meds 3 days before my TTT. Granted - I was not on many meds back then but it still got me sick as a dog without them. I am not sure if I could do that today - I am on a lot of meds that should not be stopped abruptly. Not sure about yours. Oh it was horrible, I just got back on them and I feel terrible. It's very difficult. Quote Link to comment Share on other sites More sharing options...
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