Jessica Posted October 4, 2016 Report Share Posted October 4, 2016 Hi, I'm Jessica and I've been browsing the forums for the past few months. At first I was too ill to type out anything that would make sense, but I've decided it's about time I say hello! This is the second time my body has gone somewhat haywire about 8 months after pregnancy. At first I was confident it was POTS or at least some form of dysautonomia, but now my heart isn't necessarily doing crazy things when I stand up like it was in the beginning. My blood pressure is on the low side for me and never went back up after my most recent pregnancy. If I'm hanging out not doing much, it's usually in the 90's/60's, which I know is nothing for many of you! It's different for me though, as my previous blood pressure was 120/80. Anyway, through trying to figure out what is going on, I've learned that I have some different arrhythmias, some of them benign, some of them not. I know this is not generally a part of POTS, but I have found some threads on here discussing it. Here is my predicament- I was scheduled for autonomic testing on Friday. But I JUST found out that my event monitor showed a short run of ventricular tachycardia and my EP wants me on a beta blocker. He is not overly concerned, but wants me to get a cardiac MRI to cover our bases. I know I can't be on the beta blocker before the testing, so I'm just not sure what to do. Hope that I don't have another run in the next few days and skip the BB? What if I have VT during the testing? I am so scared to learn about this VT. I just don't know! I am generally able to pinpoint when I'm having an arrhythmia, and a lot of my sensations are present constantly or at least most of the time. Especially when sitting still or lying down, I'll get these sensations of warmth in my extremities and I'll start to feel woozy. I can't document anything clinically relevant when doing a "poor man's" tilt table test. Have any of you had that where you couldn't document anything on your own, but something showed up on the TTT? I feel like no one knows what to do with me. I've also had daily headaches, sensations of pressure in my head, lots of nausea, tinnitus, etc. Anyway, I just wanted to say hello and "introduce" myself. Thanks for listening! Quote Link to comment Share on other sites More sharing options...
angelloz Posted October 4, 2016 Report Share Posted October 4, 2016 Hello and welcome! Could you call to wherever you are having the autonomic testing done and explain about the VT and the doctors recommendation? They should be able to advise you on your situation. As for the testing, with autonomic issues it can depend on the day or even moment for some. Head pressure was a big one for me at the beginning, along with a long list of other things. All the best! Quote Link to comment Share on other sites More sharing options...
Katybug Posted October 4, 2016 Report Share Posted October 4, 2016 Hi Jessica, I feel like this is important to talk through with your EP. They should be able to advise you on the safety of waiting to start the BB and also of having the tilt test at all given this new diagnosis. Glad you finally posted! Katie Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 4, 2016 Author Report Share Posted October 4, 2016 55 minutes ago, angelloz said: Hello and welcome! Could you call to wherever you are having the autonomic testing done and explain about the VT and the doctors recommendation? They should be able to advise you on your situation. As for the testing, with autonomic issues it can depend on the day or even moment for some. Head pressure was a big one for me at the beginning, along with a long list of other things. All the best! Angelloz - Tell me more about the head pressure! It is such a bizarre symptom. Did you ever figure out what it was? Do you know what helped it get better or did it just eventually go away? Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 4, 2016 Author Report Share Posted October 4, 2016 10 minutes ago, Katybug said: Hi Jessica, I feel like this is important to talk through with your EP. They should be able to advise you on the safety of waiting to start the BB and also of having the tilt test at all given this new diagnosis. Glad you finally posted! Katie Thanks, Katie! I think since it is past Oct 1st we are actually being seen at the same practice, but by different EP's. My EP is super nice, but not overly familiar with me and I don't even think is aware of the autonomic testing. We've only met once and my follow up visit isn't until the end of the month after I get a cardiac MRI. The reason I was still pursuing the testing is because I feel crappy all the time and have episodes of syncope/pre-syncope even when I haven't experienced the arrhythmia for a week or more. My original cardiologist (who I broke up with because they started to think I was being dramatic about my symptoms) thought maybe I had some vasovagal issues going on and I also have a history of gastroparesis, which is part of why dysautonomia was on the radar. I think I've decided I want to wait for the results of the MRI before pursuing the testing, although I dread weaning off of a beta blocker now knowing about the VT. Apparently if it's short, they don't get too worried about it? I'm worried for sure though! Quote Link to comment Share on other sites More sharing options...
angelloz Posted October 4, 2016 Report Share Posted October 4, 2016 My head pressure was very orthostatic at the beginning....most noticeable when standing..better sitting, even less when lying down. Doctors said it would hurt worse if it was a CFS leak, but recently I have read that may not be true. Also, that the orthostatic part can change over time..which mine has so I am rethinking the CFS thing. One doctor said that it was caused by my reduced blood volume which does make sense. It is so much easier to tolerate than my migraines that I sort of ignore it most of the time. I hope you get some answers and some help soon. All the testing can be stressful in and of itself. Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 4, 2016 Author Report Share Posted October 4, 2016 2 minutes ago, angelloz said: My head pressure was very orthostatic at the beginning....most noticeable when standing..better sitting, even less when lying down. Doctors said it would hurt worse if it was a CFS leak, but recently I have read that may not be true. Also, that the orthostatic part can change over time..which mine has so I am rethinking the CFS thing. One doctor said that it was caused by my reduced blood volume which does make sense. It is so much easier to tolerate than my migraines that I sort of ignore it most of the time. I hope you get some answers and some help soon. All the testing can be stressful in and of itself. Thank you for your reply. My PCP had CFS leak on her radar, but the neurologist I saw didn't think much of it. How has your orthostatic part changed for you? Sorry for all of my questions! I wonder about reduced blood volume as a symptom since my blood pressure is lower than my "norm". Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 5, 2016 Report Share Posted October 5, 2016 Hi, Jessica, welcome to DINET. I know there is a list of medications to refrain from before a tilt table, however I was on my BB before and during my tilt. It was too dangerous for me to go off of it. I ended up having a terrible tilt and confirmed POTS regardless of the BB in my system. Like Katie suggested, talking to the doctor performing the test can hopefully guide you. I also saw that you mentioned you have symptoms while lying down, has anyone tested for Inappropriate Sinus Tachycardia (IST)? I was diagnosed many years ago w/ POTS (hyperadrenergic component) and 2 years ago w/ IST also. I had the increase of HR upon standing, but also a fast HR and dizziness while laying down. The fact that my symptoms didn't relieve when I was supine coupled with the tachycardia both during the day and at night, led my doctor to diagnose that also. Have you seen our physician's list? It lists doctors who specialize in Dysautonomia/POTS and you can search by location, specialty, etc. It's maintained by Katie and is updated regularly so the information provided is current. Again, welcome to the forums and wishing you the best! Sarah Quote Link to comment Share on other sites More sharing options...
momandmore Posted October 5, 2016 Report Share Posted October 5, 2016 I'm not an expert but I would be very inclined to call the EP who wants the MRI and inform them about the autonomic testing. That doctor would ideally want to coordinate all the information. The other thing possibly worth asking is if a title table test can trigger VT. As well as, should you definitely get on the BB before the TTT if it could? Should you even get a TTT if it could? Again, I don't know much but I had a relative who had VT and it was taken very seriously. He had considerable problems with his heart valves and I don't know if that's related. For no reason, my EP didn't want a TTT. I thought that was weird. But then I heard an interview with Dr. Boris from CHOP and he doesn't do them either. His reasoning is that they are uncomfortable and he can get good enough information using the poor man's version in his office. My dysautonomia was confirmed when I had a stress test and was totally hooked up for awhile. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 5, 2016 Report Share Posted October 5, 2016 momandmore - I believe you are correct in that Jessica should make sure the tilt table will be safe for her. That didn't even cross my mind at first, glad you mentioned that. If anyone is curious about the "poor man's tilt" it's now clinically referred to as the "Active Stand Test", here is an article on it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478101/ Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 5, 2016 Author Report Share Posted October 5, 2016 10 hours ago, SarahA33 said: Hi, Jessica, welcome to DINET. I know there is a list of medications to refrain from before a tilt table, however I was on my BB before and during my tilt. It was too dangerous for me to go off of it. I ended up having a terrible tilt and confirmed POTS regardless of the BB in my system. Like Katie suggested, talking to the doctor performing the test can hopefully guide you. I also saw that you mentioned you have symptoms while lying down, has anyone tested for Inappropriate Sinus Tachycardia (IST)? I was diagnosed many years ago w/ POTS (hyperadrenergic component) and 2 years ago w/ IST also. I had the increase of HR upon standing, but also a fast HR and dizziness while laying down. The fact that my symptoms didn't relieve when I was supine coupled with the tachycardia both during the day and at night, led my doctor to diagnose that also. Have you seen our physician's list? It lists doctors who specialize in Dysautonomia/POTS and you can search by location, specialty, etc. It's maintained by Katie and is updated regularly so the information provided is current. Again, welcome to the forums and wishing you the best! Sarah Hi Sarah! Thanks for the info. Is IST when your heart rate is just really fast when lying down? Mine is generally at a normal rate and will then shoot up randomly. I think a big part of that is these different arrhythmias that I have going on, although I don't think that is all of it because lots of times I will feel faint or "off" in the absence of an arrhythmia. Is there a specific test for IST? Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 5, 2016 Author Report Share Posted October 5, 2016 7 hours ago, momandmore said: I'm not an expert but I would be very inclined to call the EP who wants the MRI and inform them about the autonomic testing. That doctor would ideally want to coordinate all the information. The other thing possibly worth asking is if a title table test can trigger VT. As well as, should you definitely get on the BB before the TTT if it could? Should you even get a TTT if it could? Again, I don't know much but I had a relative who had VT and it was taken very seriously. He had considerable problems with his heart valves and I don't know if that's related. For no reason, my EP didn't want a TTT. I thought that was weird. But then I heard an interview with Dr. Boris from CHOP and he doesn't do them either. His reasoning is that they are uncomfortable and he can get good enough information using the poor man's version in his office. My dysautonomia was confirmed when I had a stress test and was totally hooked up for awhile. Hi mom&more! I wish that doctor would coordinate everything, but I've had a hard time getting ahold of him. I made a judgement call and decided to reschedule the autonomic testing because I honestly don't feel comfortable going through with it until the cardiac MRI is complete. I think VT can be much more serious if there are structural problems with the heart, which so far hasn't been proven with me. However, there is a possibility I have this genetic cardiomyopathy, so that is the reason for the upcoming MRI. That is interesting about the tilt table. There actually is a doctor that was recommended to me that does not have an autonomic lab, but does the "poor man's version". Are you near CHOP? The only reason I ask is because we just took my daughter there to see a specialist recently. It was for something unrelated to all of this though :-) Quote Link to comment Share on other sites More sharing options...
momandmore Posted October 6, 2016 Report Share Posted October 6, 2016 We are near CHOP, and near DuPont, too. I like the EP Dr. Temple at DuPont (I never went to CHOP for cardiology yet). I have two children who have seen him. He's picked up things other cardiologists, including an EP, missed. I found an EP I like locally. He is very kind and understanding about dysautonomia but he's really hard to get an appointment with. So I understand how hard it is to contact busy doctors. Quote Link to comment Share on other sites More sharing options...
Jessica Posted October 6, 2016 Author Report Share Posted October 6, 2016 57 minutes ago, momandmore said: We are near CHOP, and near DuPont, too. I like the EP Dr. Temple at DuPont (I never went to CHOP for cardiology yet). I have two children who have seen him. He's picked up things other cardiologists, including an EP, missed. I found an EP I like locally. He is very kind and understanding about dysautonomia but he's really hard to get an appointment with. So I understand how hard it is to contact busy doctors. Momandmore - Sounds like you might be around where I grew up. Messaging you now! :-) Quote Link to comment Share on other sites More sharing options...
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