westernmass

Hippy chic- YES I get the one strong beat! I think my hr dips low, I feel stronger beats in general and then one bad beat. After that usually is the chest pain and lightheadedness. That is a very noticeable pattern though, I'm glad I am not alone.

I think I've been experiencing something similar with the Brady and jumping hrs. I don't know exactly how accurate my monitor is but at the very least I'm having those jumps. Also bad chest pain and I've been having visual disturbances too, I like the grey spot description- I haven't been able to describe them well. I have the same questions as you with regards to the holter/event monitors. Sorry for the rude nurse, they can be a real drag. I like the advice above about ignoring drs who smirk. Best of luck to you!

I have to agree, the heat seems to make my symptoms worse, especially the chest pains. Have you been swimming much? The few times I've recently had the chance it was a wonderful break, however short. Winter's not TOO far away! Then we'll all be shivering

I tried searching for this using a few different wordings, so hopefully this isn't a repeat. So from what I can tell, pots can: -slowly get better -slowly get worse -have periods of remission/relapse -spontaneously go away -stay the same LOL. I know adolescents have a good chance of growing out of it and that post-viral potsies have a better chance of recovering. I guess what I'm wondering is: What percentage of people do get better? What is the average duration of pots? I haven't been able to find any info on that. I hate the not-knowing part of this. I'd (selfishly) like to know whether to accept my condition or continue fighting. Probably a combination of both are called for- accept how I currently am and always strive to feel the best I can, with or without pots. Sheesh!

StephL- cool! Do you and hubby live out here still? I do have other symptoms. The reason I found out about pots originally is because I went to the ER three times due to incredible chest pain-- I thought I was heart attacking! So my symptoms: Chest pain Lightheadedness/presyncope Vision stuff (blurring is the main one but also see lights, aura etc) -- this one is less common Palpitations and tachycardia (and maybe some Brady as well?) Temp regulation- tend to be freezing! Could be the midodrine maybe tho? Slight stomach issues- again, possibly midodrine Headaches- could be midodrine. As a teen I had a horrible time w migraines though they seemed to fade away and for the past ten years I would get a few here and there.. LOL that is all I can think of for now. Oh, well, speaking of that! Brain fog is a new symptom I've noticed in the past couple months!! What about you? Do you know what "form" of pots you have?

I have noticed my hair thinning over the past several months... Although tbh I think this may have started before pots. I'll be interested to see how common this is among other potsies as I've wondered this before but couldn't tell if the two were related.

Thanks!! It is a really great And supporting place to have found. I'd be pretty lost otherwise. Is it common to have your BP continue to lower with pots? My BP hasn't changed much since starting midodrine... That would mean either midodrines not raising my BP or my BP is lowering itself and midodrine is raising it back up? Does that rationale make sense? I've been wondering about that. It's always hard going from med to med and dose to dose because I don't really have a feel of what my "normal" "baseline" is like without meds.

Thanks for the welcome and the replies As usual, comforting to know I'm not alone! I am currently on midodrine- 5mg in morning and afternoon and 2.5 evening. I had a bad reaction to metoprolol and a less bad but still poor reaction to florinef. I basically tolerate midodrine, I think... Though it seems to mostly have shuffled my symptoms around. The saga continues... Does havin a low hr and low BP generally give any clues to what subset of pots one might have? My cardio has been fantastic thus far, and I know he has two other pots patients, but I think this is the first time he's dealt with pots. He is trying to get me to Boston for further testing, but until then I'm trying to find puzzle pieces to put together

Hi everyone. I'm new but have been reading the forum for the past few months since I've been diagnosed with POTS. 25 year old female, athletic in my past and lazier in recent years (but still very active... Would hit the gym or a yoga class once in a while and my job required walking 3-4 hours 2-3x/week) and was struck with POTS very suddenly at the end of feb. Anyway- my question. It seems most people have high HRs and often high BP as well. I seem to have low ones. My BP is generally 100/60 range. My HR while laying is high 50s/low 60s. Sitting is 70s and standing... Who knows, it's all over the place while standing. I went from 60 to 110 during TTT and wearing te 24 he holter my high point was 150 the first time and 130 the second, with an avg hr in the 70s. I recently caught some in the 40 range a week or so ago while sitting... I guess my question is, does anyone else have numbers like that? Am I lower than normal (and what might that mean)? Thanks!!

Kjmom- I love that one! Whenever i call my cardios office, his receptionist is always like "Oh, hi Rachel! How are you, honey? Is the new med not working?" LOL I love all these! Thanks for posting your list!

Count me in! I recently stayed the weekend at a lake house and despite feeling sick most of the time, I noticed immediately how "normal" I felt in the lake! It was incredible. I was thinking it was a combination of less "gravity" in the water-- I wasn't standing so I wasn't dizzy. Plus since I was floating around and swimming I was mostly horizontal- another good thing. And of course the coolness was nice. What a relief that was. I wish I always had access to it! Very cool to see I'm not alone feeling this way

Hi I'm curious about what made you curious about a lot of these questions!