WintersBreeze Posted October 8, 2015 Report Share Posted October 8, 2015 Hi Everyone first I want to thank everyone who takes the time to post their experiences and updates on meds and tests and really I have found this forum to be so informative. I have been battling this since 2011 and after doctors after doctors and misdiagnosis and the typical "your lucky you have low blood pressure, your gonna live a long time" and not understanding quality of life is effected and never bothering to see what is going on I have lived with this for quite some time. I have always had low blood pressure but things really went south in the end of 2010 and beginning of 2011. I am now at the point where I can't function I am practically bed bound. That's the short version of my history, I found a neurologist who is knowledgeable with POTS and got in to see him. He did the a exam and I answered all the questions he asked and he said you have POTS just based on heart rate from laying to standing and the changes in my HR. 5 years ago my resting heart rate was low 50's and now it's in the high 70's laying, sitting 90's and standing 140's. My question is this he want to do a TTT with 4 different tests and one of the problems is I have to stop my SSRI which I don't want to do. I have had an anxiety disorder from 2001 I had an Acute PE (Blood Clot in the Lung) which I have suffered from PTSD and anxiety since. I don't want to make my body worse by stoping my SSRI for 7 days to do this test if he already told me I have POTS. Have you all had experience with stopping meds for your TTT? Because we have no one doctor educated in this I hear different things from my specialists. I would like some real advice from others who have gone through or going through this then to always be in the dark with what to go with when one doc says one thing and contradicts another. Of course there is the high from seeing a light with its not all in your head and the low of NO direction. Just checkbox on symptoms and finally a diagnosis. Will the TTT rule out other things? I see some on here say you should be tested for other things to rule out before accepting the POTS diagnosis, how many have had other dysautonomic disorders with POTS symptoms?Thanks in advance and I look forward to making some new friends who understand being on this journey. -Bree Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 9, 2015 Report Share Posted October 9, 2015 The ttt can pick up changes in both bp and hr. POTS is a diarnosis specifically regarding hr. A ttt could show if you also have significant fluctuations in your bp. It is not that uncommon to have more than one form of autonomic dysfunction such as POTS and NCS together.I did have to go off of all my meds for the ttt and recently for another hematologic test. It was definitely unpleasant but worth it in that we found important information from my tests. I was not on an SSRI, so I can't give specific info about temporarily discontinuing that type of med.Good luck on whatever you decide.Katie Quote Link to comment Share on other sites More sharing options...
kellygirl Posted October 9, 2015 Report Share Posted October 9, 2015 My doctors pulled me off ALL MEDS except for my thyroid medication, the day I was admitted to the hospital (I was taking atenolol for SVT, Seroquel for bipolar disorder, temazepem for insomnia and baclofen for back pain). It is 3 months later and I am still not allowed to resume my meds and am actually doing fine without them. In my case the docs are wanting to rule out any of my meds causing dysautonomia. So far my diagnosis is idiopathic but I have not had any autonomic testing done besides the TTT. Quote Link to comment Share on other sites More sharing options...
stellaluna Posted October 31, 2015 Report Share Posted October 31, 2015 Uggh... I was given no direction about continuing current meds or stopping any. I was told by scheduler to have a driver (in case I had "trouble" with the test) and that I would be given a call the day before the test. Perhaps they will suggest something on the call. I am on daily Topamax (migraine) and Xanax. Skipping the Topamax makes me feel tachycardic sometimes--warns me that I forgot. I also have mild Mitral Valve Prolapse with regurgitation. I worry that skipping my AM Xanax will raise my baseline heart rate and affect my proper diagnosis on TTT....Frustrating experience (no surprise right?) with the cardiogist but at least I finally got the TTT order from after many tests and appts and gently asked about POTS. My neurologist (for migraines) said "that's a cardiologist" issue. He also suggest it was anxiety despite my log of heart rates and BPs carefully recorded (and clearly leaning towards POTS per Vanderbilt ) as suggested to be taken and recorded daily by cardiologist. TTT this week, We'll see... Quote Link to comment Share on other sites More sharing options...
corina Posted November 1, 2015 Report Share Posted November 1, 2015 Stellaluna, could it be an option to call the doc in charge and ask about the Xanax? I can imagine it affecting the test, which would be a shame! Quote Link to comment Share on other sites More sharing options...
stellaluna Posted November 1, 2015 Report Share Posted November 1, 2015 Stellaluna, could it be an option to call the doc in charge and ask about the Xanax? I can imagine it affecting the test, which would be a shame!Yes. Thanks sounds like I need to get this sorted out before the TTT to have best possible, accurate results. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted November 3, 2015 Report Share Posted November 3, 2015 We are going to Stanford this week and they require you to be off meds (length of time depends on which meds). I spoke with the nurse there who, in turn, relayed the conversation with the doctor and they made exceptions to several of my girls' meds. I told them that they wouldn't be able to get to the appointment without them. She said "oh, they are really sick". Yes, they are!! I just know that their symptoms show up quite nicely on the meds, so I know how they can get if they don't have them. It's scarry. Quote Link to comment Share on other sites More sharing options...
stellaluna Posted November 6, 2015 Report Share Posted November 6, 2015 Stellaluna, could it be an option to call the doc in charge and ask about the Xanax? I can imagine it affecting the test, which would be a shame!Yes. Thanks sounds like I need to get this sorted out before the TTT to have best possible, accurate results. So for my test, they said continuing current meds was fine. I was slightly annoyed that they did not tell me until the call the day before that I would not be able to drink (even water) or eat for 4 hours before my 1pm appt. Had I known, I would've taken a full day off work and not a 1/2 day as I become more symptomatic when I am not drinking LOTs of water and if I skip lunch. I wonder what the reason behind that one is.... Quote Link to comment Share on other sites More sharing options...
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