Random-Symptom Man Posted September 28, 2019 Report Posted September 28, 2019 This morning I made an odd observation about myself; my heart rate increases about 7 beats per minute when my eyes are open and it is light. I tried to search to see if it is normal or not. I didn’t find anything. I’ve noticed that my HR increases during the day, but I’ve always assumed that was just because I sat up more. After I do horizontal yoga, I have to rest before sitting up or standing or else I’ll start to faint. So, this morning, I lay there with my eyes closed. I checked my HR and it was lower (77 down from 113 BPM). I figured, I would wait another 30 seconds and then get up. I checked my HR again, and it was 8 BPM higher. I figured my HR was still variable from coming down from yoga, so I decided to wait longer. I closed my eyes and waited. When I checked again, my HR was lower again. I figured I’d check again in 30 seconds, and it was 7 BPM higher again. Seeing a possible trend, I ran an experiment. Experiment 1: After 30 seconds eyes closed: HR 74 After 30 seconds eyes open: HR 83 After 30 seconds eyes closed: HR 72 After 30 seconds eyes open: HR 80 After 30 seconds eyes closed: HR 75 After 30 seconds eyes open: HR 81 After 30 seconds eyes closed: HR 74 After 30 seconds eyes open: HR 80 I rested in the same position, and tried to count down from a large number by 7s (it’s a trick I learned to focus on the same thing each time to distract me from anything else. I can’t do this and anything else at the same time). Experiment 2: I re-ran the same test, but sitting up, with the same type of results. Experiment 3: I re-ran the experiment in a dark room, and saw no difference between eyes closed and eyes open. Experiment 4: My wife did the same experiment, and saw no real difference. On average, there could be 1 BPM difference the error is about 2 BPM Does anyone else see any difference between light and dark. Quote
Pistol Posted September 28, 2019 Report Posted September 28, 2019 @Random-Symptom Man - every person’s HRVaries greatly by stimulation, light or noise is one of them. We are not robots, HR and BP are just numbers to show how we react to our environment. As long as Vitalsigns are within normal limits it is OK to have fluctuations. Even brief episodes of high or low are acceptable. Do not fall into the trap of comparing numbers - it is way more helpful and productive to go by how you feel. Believe me, I have learned this lesson early on. Quote
lieze Posted September 28, 2019 Report Posted September 28, 2019 Interesting. Lately in this flare I do best early morning hours to late night. I’ve been telling people I feel like a vampire. I can be having absolutely horrible symptoms feeling so hot I feel the need to strip down to my underwear, feeling sick all over, dizzy spacey headed, totally out of my gourd with crazy thoughts and feelings. The sun goes down and suddenly it all lifts. It doesn’t happen every time but more times than not if I am having a horrible afternoon by 8-9 pm I will get relief. I have tried staying in one of the darkest rooms and not opening shades to see if I can control it and it does not stop my symptoms. Quote
DizzyPopcorn Posted September 28, 2019 Report Posted September 28, 2019 59 minutes ago, Pistol said: @Random-Symptom Man - every person’s HRVaries greatly by stimulation, light or noise is one of them. We are not robots, HR and BP are just numbers to show how we react to our environment. As long as Vitalsigns are within normal limits it is OK to have fluctuations. Even brief episodes of high or low are acceptable. Do not fall into the trap of comparing numbers - it is way more helpful and productive to go by how you feel. Believe me, I have learned this lesson early on. This is true. Weirdly enough, sometimes my heart is 105 (which is high for me) and i feel great. Other times its 90 and i feel awful. Quote
dancer65 Posted September 28, 2019 Report Posted September 28, 2019 I agree with Pistol it’s about how you feeling it’s easy to get to checking vitals all the time . My consultant told me not to rely on the numbers but to listen to my body . Quote
Random-Symptom Man Posted September 28, 2019 Author Report Posted September 28, 2019 I totally agree that living by exact numbers is a bad trap. Yet, I am a data person - or at least I was before cronic brain fog set in. I have found some rough numbers that help me keep from getting destroyed by dysautonomia. It's usually not a specific number, but a change in numbers that I look for. Because I often feel like ****, it can be difficult to tell when my body will react even worse and when it wont based just on feeling. I am working on this, but it's slow going. I spent most of my life ignoring things like pain, fainting and gut problems. No surprise that 1) it caught up to me, and 2) I am rubbish at recognizing early warning signs on how my body feels. I know that if my HR is variable, it's best not to try to sit up. If my HR doesn't drop most of the way to my supine resting HR after a workout, I shouldn't stand up. If I don't drink at least 20 oz of fluid to get up in the morning, I'm in trouble that day. In this case, I wasn't as interested in the exact numbers. I was interested that either closing my eyes or sitting in the dark could be used to help bring my heart rate down. Every bit helps when things are bad, or when I can't lie down. Deep beathing can also help me (5-12 bpm). I use that often to feel better. Ice on my wrists sometimes helps (0-20 bpm on a hot day). Now I'm going to add closing my eyes to my coping routine (rather than distracting myself with this light-generating screen in my hands). I'll see if it actually helps... Quote
DizzyPopcorn Posted September 28, 2019 Report Posted September 28, 2019 10 minutes ago, Random-Symptom Man said: I totally agree that living by exact numbers is a bad trap. Yet, I am a data person - or at least I was before cronic brain fog set in. I have found some rough numbers that help me keep from getting destroyed by dysautonomia. It's usually not a specific number, but a change in numbers that I look for. Because I often feel like ****, it can be difficult to tell when my body will react even worse and when it wont based just on feeling. I am working on this, but it's slow going. I spent most of my life ignoring things like pain, fainting and gut problems. No surprise that 1) it caught up to me, and 2) I am rubbish at recognizing early warning signs on how my body feels. I know that if my HR is variable, it's best not to try to sit up. If my HR doesn't drop most of the way to my supine resting HR after a workout, I shouldn't stand up. If I don't drink at least 20 oz of fluid to get up in the morning, I'm in trouble that day. In this case, I wasn't as interested in the exact numbers. I was interested that either closing my eyes or sitting in the dark could be used to help bring my heart rate down. Every bit helps when things are bad, or when I can't lie down. Deep beathing can also help me (5-12 bpm). I use that often to feel better. Ice on my wrists sometimes helps (0-20 bpm on a hot day). Now I'm going to add closing my eyes to my coping routine (rather than distracting myself with this light-generating screen in my hands). I'll see if it actually helps... Were you perhaps a programmer or big data analyst before this happened? Your way of thinking is the same as mine. Im a software developer and worked on heavy databases in the past - data was something i loved, be ause you could predict trends with it. Quote
Pistol Posted September 28, 2019 Report Posted September 28, 2019 @Random-Symptom Man - I used to get hyperadrenergic flares at work and would lock myself in the bathroom, lights out, lying on the floor with my feet up on the wall. Yeah - darkness, quiet, hiding .... it all works. Anything to stop stimulation. Quote
DizzyPopcorn Posted September 29, 2019 Report Posted September 29, 2019 38 minutes ago, Pistol said: @Random-Symptom Man - I used to get hyperadrenergic flares at work and would lock myself in the bathroom, lights out, lying on the floor with my feet up on the wall. Yeah - darkness, quiet, hiding .... it all works. Anything to stop stimulation. What is the physiological reason for those to happen? I know its due to the dysfunctional autonomic system, but like, physically speaking : What makes the body release adrenaline versus X stimulus? Quote
Random-Symptom Man Posted September 29, 2019 Author Report Posted September 29, 2019 @DizzyPopcorn I used to be a professor of geophysics, cyber infrastructure and data analysis. After that I created tech startups. People brought me in for tricky algorithms. Now I struggle to understand what I used to do. In rare moments I get glimpses. I can remember the pieces, but struggle to understand how they fit together. Chronic brain fog sucks! Quote
Random-Symptom Man Posted September 29, 2019 Author Report Posted September 29, 2019 @DizzyPopcorn From https://courses.lumenlearning.com/suny-ap1/chapter/central-control/ ”Bright light hitting the retina leads to the parasympathetic response, through the oculomotor nerve, followed by the postganglionic fiber from the ciliary ganglion, which stimulates the circular fibers of the iris to contract and constrict the pupil. When light hits the retina in one eye, both pupils contract.” Quote
dancer65 Posted September 29, 2019 Report Posted September 29, 2019 Radom symptom man have you thought about keeping a dairy ? I logged everything and found this very useful over time, I started to see pattens That triggered symptoms, syncope, PEM, and it helped me remember meds and to drink. It was also helpful reference for notes to make when I attended appointments as brain fog often made me forget important information. Quote
Pistol Posted September 29, 2019 Report Posted September 29, 2019 @DizzyPopcorn - as far as I understand there are many triggers that cause adrenaline to get excreted, normal orthostasis for example. Exercise, stimulation ... and this is in everybody. The problem with hyperadrenergic pots is that we either produce too much of it or it does not get cleared out of the synapse when it is no longer needed. Example: when we stand up the body releases adrenaline so the blood vessels constrict and HR goes up to push the blood up, since gravity forces it to sink to our feet. This process normally takes 1 minute and then the adrenaline gets cleared out by something called norepinephrine transporter. In some people this transporter does not exist, so the adrenaline just stays there and we get hyper and more adrenaline gets produced. And another reason is that the body just makes too much of it. There are other theories too but they are too complicated for me. @Random-Symptom Man I used to be a RN on a cardiac unit. I was very multitasking, worked well in a stressful environment and did 12 to 14 hour shifts. Today I am lucky if I can read the paper or remember to put the milk in the fridge. Yes, brain fog stinks and it is such a waste but it is what it is. POTS robs us of many things but not the ability to be present for our families and I am thankful for that. I cannot go to functions or shopping with my daughter but I can be her mother and that is most important to me. I used to grief over what I can no longer do but today I celebrate what I CAN do. Quote
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.