kkirsten Posted October 2, 2018 Report Share Posted October 2, 2018 Hi, I just wanted to ask whether anybody experiences/ has experienced similar symptoms to me (daily), as well as how the Tilt-Table Test went for some people. But firstly I would like to say that I had my tilt-table done today and can honestly say it isn't frightening at all and that many people hardly feel the effects of the Glycerine titrate spray! (makes your heart rate a little faster to prompt symptoms). I was so scared beforehand from reading posts online, but it shouldn't panic anyone so much so that they refuse to go ahead with the investigation. It may really help in finding a diagnosis! The nurses were fantastic & helped me calm down. Anyway, aside from this, they found that I experience BP/HR drops which are quite extreme, but never actually faint; just feel like I could fall asleep & feel really heavy headed. My heart rate for example went from 150 standing almost instantly back to 60 bpm lying down, my syncope nurse said that this is a very extreme change/drop, yet is still safe.. Anyone else had results like this in their test? I recently realised how this significant drop was actually causing my PVCS.. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted October 2, 2018 Report Share Posted October 2, 2018 Yes I had extreme changes in BP and HR resulting in me fainting, a few times hurting myself quite badly but it could have been worse ! It has improved on midrodine but I can still have huge swings especially when I am getting ill . Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 2, 2018 Report Share Posted October 2, 2018 My TTT has no medication. But as soon as they tilted me up I was over 130 and stayed there for the 45 minutes til the laid me back down. It was exhausting but otherwise ok. My BP doesn't usually change much. It dropped during my second TTT after they laid me down and wanted me to rest before I tried to stand up. But during my day to day I think I do OK. I don't check my BP much. I have never fainted. In the beginning I would lose my eyesight like I was going to faint but I never actually did. For me instead of fainting it is more extreme exhaustion. Like it to too much to blink and breathe. It sounds kind of scary but I don't get it much anymore and I try to keep someone around if I am doing something that I think may trigger it. Like showering or manual labor things. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 3, 2018 Report Share Posted October 3, 2018 My HR went to 155 without meds. My base rate is probably 75-80. For me once I am up my HR does not calm down for a while after I sit or lie down. Maybe that’s what your nurse meant, if you went back down to 60 right away. Quote Link to comment Share on other sites More sharing options...
ShiEksdee Posted October 4, 2018 Report Share Posted October 4, 2018 I have resting tachycardia (somewhat more controlled with meds). Heartrate went from 90-ish to 159 very quickly on TTT (this is "normal" for me which makes me feel awful). Stood upright for a bit after a near faint on the TTT coming up, but after standing a lil my bp and heartrate dropped drastically and I fainted. Instantly diagnosed with NCS. One of the lil nurses vaguely heard of POTS and think I have that too but the main ones over it don't really know much about it. (I suspect I have it) Was never given any meds on the test. This is just my normal function of everyday life. Always feel awful when I do anything but sit and lean to one side, changing positions is torture, and if I don't sit/lean or lie down when I start feeling worse I will drop like a swatted fly. My heart rate does take a bit to settle down after I sit if it goes up fast, so I don't experience the drop unless I faint. That being said I'm glad your TTT wasn't that stressful for you because to me it was the worst test I've ever had in my life and it took me over a month to stop having faint-every-day on just standing for some seconds. I guess it really wore out my body and nerves. I've been begging for this test for ELEVEN YEARS though, ever since I first suspected I had something similar to POTS so at least I'm glad I got my own answers even if docs didn't know much about it. Happy docs finally listened to me enough to get me this test done. Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 4, 2018 Report Share Posted October 4, 2018 @ShiEksdee - I am sorry to hear about your struggles. I also fainted on my first TTT and had another done that confirmed POTS but was misinterpreted by the cardiologist ( who was not familiar with POTS and is an EP ). My autonomic specialist diagnosed me with hyperPOTS and NCS. What are you taking for your tachycardia? Quote Link to comment Share on other sites More sharing options...
ShiEksdee Posted October 4, 2018 Report Share Posted October 4, 2018 8 hours ago, Pistol said: @ShiEksdee - I am sorry to hear about your struggles. I also fainted on my first TTT and had another done that confirmed POTS but was misinterpreted by the cardiologist ( who was not familiar with POTS and is an EP ). My autonomic specialist diagnosed me with hyperPOTS and NCS. What are you taking for your tachycardia? They gave me Atenolol for it, which helps it a bit and keeps it around 90-lil over 100 resting. It used to stay about 120-140 resting. Yeah fainting on the TTT is no fun. I hate the feeling of fainting. ; .; And I always feel faint. Quote Link to comment Share on other sites More sharing options...
kkirsten Posted October 9, 2018 Author Report Share Posted October 9, 2018 On 10/2/2018 at 7:09 PM, dancer65 said: Yes I had extreme changes in BP and HR resulting in me fainting, a few times hurting myself quite badly but it could have been worse ! It has improved on midrodine but I can still have huge swings especially when I am getting ill . Hey! I have never actually fainted, but felt extremely fatigued or tired like I could go to bed straight away! I’m sorry to hear that:( Glad it’s improved! Quote Link to comment Share on other sites More sharing options...
kkirsten Posted October 9, 2018 Author Report Share Posted October 9, 2018 On 10/3/2018 at 12:39 PM, yogini said: My HR went to 155 without meds. My base rate is probably 75-80. For me once I am up my HR does not calm down for a while after I sit or lie down. Maybe that’s what your nurse meant, if you went back down to 60 right away. Hi! Yeah, when standing for around 40 mins my HR was always well over 110, but when I lie flat it takes less than a second to jump back to as low as 55/60bpm. It’s quite scary, not sure what could cause such extreme changes in rates, but it makes me dizzy and gives me PVCs real bad ! Quote Link to comment Share on other sites More sharing options...
kkirsten Posted October 9, 2018 Author Report Share Posted October 9, 2018 On 10/4/2018 at 9:43 AM, ShiEksdee said: I have resting tachycardia (somewhat more controlled with meds). Heartrate went from 90-ish to 159 very quickly on TTT (this is "normal" for me which makes me feel awful). Stood upright for a bit after a near faint on the TTT coming up, but after standing a lil my bp and heartrate dropped drastically and I fainted. Instantly diagnosed with NCS. One of the lil nurses vaguely heard of POTS and think I have that too but the main ones over it don't really know much about it. (I suspect I have it) Was never given any meds on the test. This is just my normal function of everyday life. Always feel awful when I do anything but sit and lean to one side, changing positions is torture, and if I don't sit/lean or lie down when I start feeling worse I will drop like a swatted fly. My heart rate does take a bit to settle down after I sit if it goes up fast, so I don't experience the drop unless I faint. That being said I'm glad your TTT wasn't that stressful for you because to me it was the worst test I've ever had in my life and it took me over a month to stop having faint-every-day on just standing for some seconds. I guess it really wore out my body and nerves. I've been begging for this test for ELEVEN YEARS though, ever since I first suspected I had something similar to POTS so at least I'm glad I got my own answers even if docs didn't know much about it. Happy docs finally listened to me enough to get me this test done. Hi I am really sorry to hear how much your condition affects you! It too has taken me years to finally get an answer for all of my strange symptoms. I think the most annoying thing was constantly being told by Drs that it was just a bit of anxiety, when I would be completely relax and content! Yes if I bend down to pick something up off of the floor, or sit down too fast on a chair/ edge of my bed- my heart will almost always skip a beat and will take a while to adjust, making me feel really unwell. I recommend trying to contact the Imperial college (Hammersmith hospital) Syncope team. This is where I had my test done in a clinical investigations unit. I think they give a lot of advice and hold talks/ groups weekly for support. Regardless, they were extremely kind and very knowledgable, not only about POTS, but they were well-read on ALL dysautonomias. hope things get better for you:) Quote Link to comment Share on other sites More sharing options...
FreyaRose Posted October 9, 2018 Report Share Posted October 9, 2018 The TTT was okay for me, i was terrified before hand, and it was physically awful for me because I got nauseous and dizzy immediately. My heart rate and symptoms all reacted immediately so they skipped the spray. Which I was so grateful for, but I'm still waiting for treatment. My doctors keep giving me life style changes and hoping it will help but I'm getting worse and worse. And now on top of everything I have a nasty cold -_- Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted October 9, 2018 Report Share Posted October 9, 2018 6 hours ago, FreyaRose said: The TTT was okay for me, i was terrified before hand, and it was physically awful for me because I got nauseous and dizzy immediately. My heart rate and symptoms all reacted immediately so they skipped the spray. Which I was so grateful for, but I'm still waiting for treatment. My doctors keep giving me life style changes and hoping it will help but I'm getting worse and worse. And now on top of everything I have a nasty cold See if you can reason with them about trying some medications while you do the lifestyle changes. Then after 6 months or so try to wean off them. We are doing that with my hubby for his high BP and high cholesterol. Medication has side effects and if you can treat without it then it would be better. But it seems like most of us need the meds in order to do the lifestyle changes they want. Quote Link to comment Share on other sites More sharing options...
yogini Posted October 10, 2018 Report Share Posted October 10, 2018 On 10/9/2018 at 11:14 AM, kkirsten said: Hi! Yeah, when standing for around 40 mins my HR was always well over 110, but when I lie flat it takes less than a second to jump back to as low as 55/60bpm. It’s quite scary, not sure what could cause such extreme changes in rates, but it makes me dizzy and gives me PVCs real bad ! 110 while standing is actually within the normal range - even people without POTS could easily have that. And the decrease while lying back down is normal too. The rest of us with POTS aren't normal as it often takes a wile for my HR to settle down. Unless your dr tells you to be scared don't be! You can hopefully fire out what is causing your dizziness and go from there. Quote Link to comment Share on other sites More sharing options...
kkirsten Posted November 4, 2018 Author Report Share Posted November 4, 2018 On 10/11/2018 at 12:16 AM, yogini said: 110 while standing is actually within the normal range - even people without POTS could easily have that. And the decrease while lying back down is normal too. The rest of us with POTS aren't normal as it often takes a wile for my HR to settle down. Unless your dr tells you to be scared don't be! You can hopefully fire out what is causing your dizziness and go from there. Hi, no that's a good day for me haha.. Usually upon standing it will shoot right up to the 160s and take a while to get back down. I've been diagnosed with Orthostatic Intolerance, yet have all the same symptoms for POTS (gastric/temperature irregularities, literally everything). The only thing I don't have is a sustained high heart rate (over 30mins). Quote Link to comment Share on other sites More sharing options...
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