erinlia

Ok, interesting. I would love it if she was not developing POTS. Does standing never cause low blood pressure with POTS?

I did an at home nasa lean test with my daughter today because I've been wondering if she may have a lowish level of POTS. laying down her numbers were 110/ 61, heart rate 62. and 123/62 h.r. 60. Then standing for ten mins these were her numbers: 119/63 71 91/78 77 98/52 93 114/69 85 89/70 46 109/70 88 at this point she was pale and sweating and a little nauseous and unwilling to stand any longer. What do you think of these numbers? i'm concerned about constant fatigue she complains about.

I didnt realize that the standard diagnostic criteria required a heart rate increase of 40bpm in kids. Thats helpful to know. Thanks. Ill listen to the POTSCast. Ill also talk to her about being careful to drink more. She is not one to like to slow down so Im hoping POTS doesnt become part of her life. thank you both for your thoughts

Ive had POTS since i was a little kid. Not diagnosed til i was an adult. Over the last year my thirteen year old has been complaining daily that she is tired. Its not so bad that it keeps her from playing actively with friends. When i was her age i was very debilitated. I have noticed though that if she has to stand still she lifts one leg and props one foot against the other knee...which is what i do when im standing and feeling POTSy. She also says she is dizzy sometimes. I did a nasa lean test in her at home. I dont feel like it was glaringly obvious pots, but what do you think? Laying down her numbers were 106/60 71. After standing ten mins it was 91/80 99. So not over a thirty point increase in her heart rate, but close. I dont know what is normal for kids this age.

Ok, thanks so much. Hearing what it does and doesnt do for some of you is really helpful.

Ive been trying Pyridostigmine for a month now. I worked up to 60mg, three times a day. I dont really feel like im noticing a difference in how i feel. Maybe its slight, and I'm not noticing it? The first few weeks it seemed like my blood pressure was lower than it should be. The last few days its been back in my more normal range, i think. If pyridostigmine was helpful for you, in what way did you notice it helping? My heart rate is still going up about 30 beats in the first few mins of standing. It would increase more than that if i stood longer and kept testing it, but i have not taken the time. Is a month a long enough time to try it? Im thinking ill go off of it and see what i notice.

I totally get what you are saying. For me i need to wake up at 8:30, get out of bed at nine. Then i sit on the couch and read to my girls til ten. By ten or ten thirty i am SO spend and go back to bed to sleep til noon or so. To be on my feet during that morning time feels like way too much. I also avoid making decisions during that time. It would be super hard for me if i had to change that routine and be more productive during that time, or it i couldnt go back to bed to sleep again. Im not sure what the solution would be without finding a med or something thst made me feel lots better in the morning.

Thanks for this video link. It looks like good info.

I guess ive never looked at sleep disorders. I just assumed sleep issues were part of POTS. Do you guys wake up feeling like you got the sleep you needed??

Yes, id really like to hear from more people on their experience

Is midodrine worth trying for POTS if you have pretty severe raynauds? I see its a vasoconstrictor. Has anyone here, who also has raynauds, been able to use it?

I see there is bits of talk on here about using the stellate ganglion block as POTS treatment. I thought I'd share my experience. I had one done about a month ago, at my doctor's suggestion. They hoped it would really help my POTS. I felt like the first few hours after each injection it MAYBE helped ease symptoms. Its hard to tell. I felt a lot of pressure in my head and my hand on that side was very warm. The pressure in my head felt nice, like I was getting more blood flow when I stood up. By the next day I definitely felt like my usual self. I have not noticed any lasting help from it. It seemed like it may have helped for a few hours, but I cant say for sure. It may have just been that I was running on adrenaline by overdoing it that day with an appointment. I have had POTS for over thirty years. The doctor did say the SGB is more likely to help people who have had POTS for a shorter period. He recommended that I keep coming back and do them again to see if the benefit builds up each time. I'm not sure I can afford to do that. The procedure itself was not bad at all. I dont mind needles. but I would say it was not very uncomfortable and was done quickly. The staff was super nice and interested in POTS, which feels rare to me. It just didn't help. also didn't make things worse....so thats a plus, right!?

Every morning i wake up feeling terrible and very exhausted...like i have not slept good. Have you learned any tricks for improving quality of sleep?

I am the same way, for sure.

Ok yeah, thanks for your thoughts. Thats helpful. Ill try LR. And experiment with time of day and speed