Phil K

I want meds that allow me to get out of bed, make breakfast, drive my kids to school, help my wife maintain a family structure without my HR hitting 120 beats per minute just standing around. Then have them where off so I can sleep overnight without fear of having my heart stop. (If my resting is 60 what would a beta blocker drop that down to? 40?) or let me function through the day and power through the elevated, and random heart stresses and give me something that slows the heart overnight so I can sleep. I feel like my fight/flight mechanism is over stimulated, or my rest/digest is on strike. I guess that’s the definition of Dysautonomia. sorry for all the posts, it keeps my mind busy, and I am having a rough day.

I agree. I have tried being more active in the house, but as soon as HR elevates I do start to panic which undoubtedly compounds the issue. Then due to elevated HR I get sleep disturbances/insomnia for a day or two. Then I become more tired and easily fatigued. I am currently on no meds. My normal HR has always just been on lower side. Even when I was 258 pounds, not exercising, my overnight resting HR was 60. My heart rate would barely cross 90 bpm unless I was running, or down strenuous work. Now, I stand and walk to the bathroom and I am hitting 90. (And BP goes up). I am afraid that clinically no MD will prescribe me anything except anti anxiety meds, which it sounds like is not good if I have hyperadregenic pots. I am only a month down this bedridden road but I am afraid I will be dismissed. I am scared.

Not worried about reducing energy. Currently bedbound 22 hours a day.

If I watch sports on tv, while lying down, my heart rate jumps into the 70’s. Have a conversation while laying down it jumps 10-15 bpm. I don’t focus on the number as much as focus on the delta or change in heart rate based on simple activities. I am afraid if I stood for 10 minutes it would surpass 120 bpm just standing. Last two times I pushed my heart rate to hard it stayed elevated (stimulated) into the night and I couldn’t sleep. It just pounds out of my chest.

I have always been active. My normal overnight resting heart rate prior to this was 45-48. Since this episode is has gradually increased. I guess the best way I can explain it is before…walking up stairs HR goes up and in a few moments it comes down. Now I go upstairs and the HR remains elevated for an hour. The heart gets stimulated and does not turn off. I know 66-68 doesn’t sound high but it’s high for me and causing all kinds of fatigue, sleep issues, and stress doing normal activities. When I have tried to push through it my HR will not slow down with rest. With standing HR goes up at least 30 bpm (63-93) and I sit or lay down if it approaches 100 bpm which usually only takes a 25-50 foot slow walk. I feel like I need something to control heart during the day, but not at night.

I am still awaiting official diagnosis, hard to see doctors in a timely fashion these days. But I have been mostly couch and bedridden for a month. Symptoms came on hard 6/17. Prior to this I was very active. Therefore my current overnight resting HR is 53 (up from 49) and during the day I struggle to keep it under 60 which seems to be a sweet spot for me. Currently during the day, at rest is 66-68 bpm. Are there any meds they can give for just during the day? Or is my RHR to low? I feel like I don’t have any good options from my limited knowledge. Thanks

Or any TvNS or tens units to improve vagal nerve function/HRV?

Thank you.

When I started feeling sick the first thing I did was reach out for counseling. I have cried and been more emotional with the therapist than anyone in my life. Probably not a good thing but it’s a start to having healthy relationships. Maybe? Good luck and keep missing the TV. Too expensive to replace.

Has anyone used this device? Pros and Cons? Thanks

Thank you. I will work on adding sitting increases to help. Much appreciated. What is your current status in regard to activity? I am hoping to get to the car, and watch my kids athletics events this fall? Maybe wishful thinking but I am going for it. respectfully, -PK

Still waiting on official diagnosis from specialist, but yeah. Only been sick/bedbound for a month, but the good days usually coincide with mornings I awake aroused or partially aroused. It is very weird waking up flaccid. Not the norm, and currently no energy to participate in intimacy. Not 100% sure how my body would respond.

I was an avid runner who slowly fatigued over the past 6 months. Diagnosed with Pernicious Anemia. Was still tired and down to running 3 days a week. I feel like there was another issue not being identified. Then i was exposed to a virus around june 9/2024. By june 17th i was bed bound. I keep reading about exercise and i am all for it. But how do i accomplish aerobic when i cant sit/stand? Still waiting on official diagnosis and potential meds, have increased fluids and salt. But i really want to get in front of this. I am already deconditioning quite rapidly. Any thoughts besides and under desk bike i can do lying on the floor? Thank you community