themissovoxo Posted May 24, 2017 Report Share Posted May 24, 2017 Hello everyone! I'm new to this forum. I am a relatively healthy 25 year old and I've been dealing with some health issues since February 2016. I've been having a hard time getting a diagnosis so I just wanted to run some of my symptoms to you all to see if this could actually be a mild form of POTS or just severe anxiety and stress? I know the mind can be a pretty powerful thing! Back in Feb. I had about two really bad panic attacks where my heart rate reached up to 170-180 bpm. For quite some time I was literally too scared to move or do anything because I constantly felt my heart beating. I would say up until Aug is when the actually "panic attacks" stopped but I was still having really bad anxiety. My resting HR would sometimes be high, but I noticed that when I would try to do anything around the house or even standing up shot my HR up high. Sometimes it got up to 145. But at the same time I was really stressed out. I went to a cardiologist and had a battery of test ran. EKGS (multiple) - NORMAL Echocardiogram - NORMAL Blood test - NORMAL Stress test - NORMAL but my resting HR was 130 and then my maximum HR on the treadmill after 7 mins was 184. Chest x-rays - NORMAL CT of chest - NORMAL Tilt table test - I did pass out but my doc said it was not POTS, but a cardio inhibitory form of NCS. After about 10 mins I starts having pre-syncope symptoms and my doctor said I blacked out and my HR went down to 45. He said that my BP was fine and didn't crash. He said that the tilt table test is designed to make people pass out and if I never passed out before on my own (which I haven't) not to worry. He told me that it is just stress and anxiety and that my heart is perfectly fine. My doc prescribed me 25 mg of atenolol for the high heart rate. He also said that it would help my physical symptoms of anxiety. I didn't take it for 3 months because I was worried it would drop my BP to a dangerous level even though I had normal blood pressure. I eventually started the medicine but I only took half. I am currently still on atenolol but it only helps a little bit. But here's a little bit of my symptoms: constant chest tightness, soreness, pressure, upper back and neck pain, rapid heart rate with minimal exertion cleaning the house: 85-120 bpm, showering: 100-130 bpm, walking up the stairs 120-140 bpm, constant fatigue, headaches, weird vision changes, feeling of adrenaline and head rush while standing. My heart rate does not always increase drastically when standing but 7 times out of 10 it does. My resting heart rate is normally around 65-80 bpm. 85-95 bpm when I'm anxious or stressed by something. Is this a mild form of POTS or anxiety? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted May 24, 2017 Report Share Posted May 24, 2017 I would get a second opinion. I didn't pass out on my tilt table yet I "failed" it and was diagnosed with POTS. Look into NCS. For some reason I am thinking that is related somehow to POTS. I can't remember where I seen NCS in all my research. Maybe someone else will know. Does you hr jump the reqired 30 most of the time? A lot of the average numbers you are giving sound like mine. A lukewarm shower will help bring those numbers down when showering. Try doing a poor man's tilt table for a little while and record the results that way you have some data to give to your doctor. POTS can be misdiagnosed as anxiety. My doctors kept telling me that was what I had. I knew better though. My panic attacks feel nothing like my POTS. I hope you find your answers. I know it took me a year and a half just to get my diagnosis and now I am on the long road of finding my cause. Don't lose hope. You will find your answer. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted May 24, 2017 Report Share Posted May 24, 2017 Hi @themissovoxo! Welcome! I'm pretty new here too. I've had a lot of anxiety in the past, and I'm pretty sure some of it was a conditioned response to my POTS, but cognitive behavioral therapy helped me a lot with anxiety. Now I don't have the cognitive symptoms of anxiety, but POTS leaves me with the physical symptoms. I'm thankful I had the therapy, otherwise I don't think anxiety and POTS would have ever gotten detangled and POTS would have never been noticed! Anxiety is really common and can be cormid with just about anything, POTS included. And undiagnosed, uncontrolled tachycardia is downright scary - anxiety has to be a normal response! I'd suggest breaking "anxiety" symptoms up into cognitive versus physical symptoms and then look at which you're having more of. This may bring you clarity. Have you tried checking your lying down versus standing heart rate at home? I did it every day for 2 weeks. The data I collected really helped me recognize patterns and cope with symptoms. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 25, 2017 Report Share Posted May 25, 2017 Hi Themissovoxo. The tilt table test is designed to make you pass out? What did they do to you besides make you stand up while wearing monitors? I passed out in mine too. I got a POTS, NCS and ultimately a Pure Autonomic Failure diagnosis. All I did was stand until I fainted. That isn't supposed to happen unless maybe they gave you meds to induce an episode. Now I am curious. Kim Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 3 hours ago, StayAtHomeMom said: I would get a second opinion. I didn't pass out on my tilt table yet I "failed" it and was diagnosed with POTS. Look into NCS. For some reason I am thinking that is related somehow to POTS. I can't remember where I seen NCS in all my research. Maybe someone else will know. Does you hr jump the reqired 30 most of the time? A lot of the average numbers you are giving sound like mine. A lukewarm shower will help bring those numbers down when showering. Try doing a poor man's tilt table for a little while and record the results that way you have some data to give to your doctor. POTS can be misdiagnosed as anxiety. My doctors kept telling me that was what I had. I knew better though. My panic attacks feel nothing like my POTS. I hope you find your answers. I know it took me a year and a half just to get my diagnosis and now I am on the long road of finding my cause. Don't lose hope. You will find your answer. Hi StayAtHomeMom, I would say for the most part... no my HR doesn't always increase by 30 bpm, majority it's by 20 bpms then it'll start to settle once I try to breath & relax & not think about it. I did a few poor mans test and got different results, some were normal and some were not. Just did one about 2 weeks ago at my cardiologist's office and it was completely normal. BP did not budge & HR only went up a few beats. Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 2 hours ago, BuffRockChick said: Hi @themissovoxo! Welcome! I'm pretty new here too. I've had a lot of anxiety in the past, and I'm pretty sure some of it was a conditioned response to my POTS, but cognitive behavioral therapy helped me a lot with anxiety. Now I don't have the cognitive symptoms of anxiety, but POTS leaves me with the physical symptoms. I'm thankful I had the therapy, otherwise I don't think anxiety and POTS would have ever gotten detangled and POTS would have never been noticed! Anxiety is really common and can be cormid with just about anything, POTS included. And undiagnosed, uncontrolled tachycardia is downright scary - anxiety has to be a normal response! I'd suggest breaking "anxiety" symptoms up into cognitive versus physical symptoms and then look at which you're having more of. This may bring you clarity. Have you tried checking your lying down versus standing heart rate at home? I did it every day for 2 weeks. The data I collected really helped me recognize patterns and cope with symptoms. Hi BuffRockChick, Thanks for the tip! I will definitely look into that. But I have done a few test at home checking heart rate with different results... but I have not done it consistently for 2 weeks. I will do that since my next follow up is in the next 2 weeks. I have another stress test scheduled on next week. Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 24 minutes ago, KiminOrlando said: Hi Themissovoxo. The tilt table test is designed to make you pass out? What did they do to you besides make you stand up while wearing monitors? I passed out in mine too. I got a POTS, NCS and ultimately a Pure Autonomic Failure diagnosis. All I did was stand until I fainted. That isn't supposed to happen unless maybe they gave you meds to induce an episode. Now I am curious. Kim Hi KiminOrlando, Thats what the doctor told me... not sure if he said that to calm me down or what? But they didn't even get to give me the meds... he diagnosed me with having NCS. But I've never passed out on my own. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted May 25, 2017 Report Share Posted May 25, 2017 What time of day was the cardiology appointment that you had a normal poor man's tilt? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted May 25, 2017 Report Share Posted May 25, 2017 When I used to do my poor man's to collect data I would watch tv so I wouldn't think about it. I can drop my hr if I think about it so I have to have something to keep my mind occupied. I did it everyday for a month. I had a few normal days and a few few really bad days but I averaged about 25-35 most days. Everytime it was done in my doctor's office it would be normal. I don't think my pots is as bad as it could be, then again I am not a hundred percent sure when it started. My tilt table showed me above 130 for almost the whole 45 minutes. I didn't have any meds administered. But then again I think my cardiologist might have been humoring me thinking it wasn't gonna show anything Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 25, 2017 Report Share Posted May 25, 2017 Hi Themissovoxo. Hhmmmmm. I have never heard of anyone actually fainting on the table and being told that they passed. Anyone else? Maybe I am wrong. You are better off not having this. I'm not a medical person, so keep this in mind when you listen to us. However, I spent years passing out and being told it is a vasovagel response/anxiety, so I am skeptical when I hear this. So, from someone who battled for help for 25 years before I found it, this is my advice - get a copy of the raw data from the test. Not just the report with his conclusions, but the actual BP and heart rates at the specific times. See for yourself what swings and dips there were. When you have exact numbers, maybe we can compare notes more. If your heart rate was 45 right before you fainted, it could mean your brain didn't get enough oxygen and it isn't POTS. Some people on this site get bradycardia and might be able to help. I don't know much about anxiety, so I will kick that part to others. I hear it can do strange things, so it isn't impossible. My experience is that doctors often prefer to blame anxiety when symptoms stray into areas they don't fully understand. I hope you find this is something easily correctable. Kim Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 @BuffRockChick it was early in the morning. Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 @StayAtHomeMom thanks for the tip! I will def try that and collect some data. But yes some days are better than others. Some days I'm extremely tired & feel like I can't do anything so I have to push myself. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 25, 2017 Report Share Posted May 25, 2017 Hi, TheMiss -- Welcome to the forum! Tilt table tests are the worst. I passed out during mine also, from what I understand not all people pass out on the tilt but it is common. You can view the syncope portion of this website for more info: https://my.clevelandclinic.org/health/articles/head-upright-tilt-testThe tilt is designed to allow doctors to evaluate your body's cardiovascular response to the change in position. This usually happens when you have a decrease in blood pressure/hr, I believe this can point to Orthostatic Intolorance, Vasovagal Syncope ( or Neurocardiogenic Syncope) Lower HR's can occur in NCS, when they diagnose POTS on a HUT, patients have a HR of over 120 BPM+ or a HR increase of 30 BPM+. Do you normally have low blood pressure? I ask because you mention in your first post neck/back pain can be known as Coat Hanger Pain caused from hypotension. I definitely would try to schedule a consult with a dysautonomia expert to evaluate your results -- you can search through the physician tab at the top of this website for a specialist in your area. All the best! Sarah Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 @KiminOrlando I didn't pass the test, he just diagnosed me as having cardio inhibitory NCS. I'm planning on getting my results from the hospital they performed the test at to have my new cardiologist go over the results. And my heart rate has never went below 60 on its on so I doubt I have bradycardia. My heart rate can tend to get pretty fast though. Quote Link to comment Share on other sites More sharing options...
themissovoxo Posted May 25, 2017 Author Report Share Posted May 25, 2017 @SarahA33 hi Sara! No low blood pressure, it's always been normal. Sometimes I will get some pre hypertensive numbers but never too low. Never seen my top number lower than 100 and my bottom number lower than 55. But that's when I'm resting & relaxed. I only found 1 specialist here in Houston that has knowledge in dysautonomia. He's a pediatric cardiologist but he accepts adults, I just need a referral from my PCP. Just haven't gotten around to doing so. Quote Link to comment Share on other sites More sharing options...
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