Faye Posted January 9, 2016 Report Share Posted January 9, 2016 I was on propranolol but it didn't help a lot with high HR. Last Wednesday Dr changed to baby dose of metoprolol 12.5 mg 2x a day...it actually seems to be more helpful in short time, but sometimes if I try to do/ have a 'normal' day. Work, floor exercise,laundry ect... No matter what ( compression shock, high sodium, well hydrated), laying flat 90/95 is a low as she goes, I know that is ' medically ' ok but I can feel my heart pounding in my throat...when I don't do as much, it might be 75/80.. I know it's not much difference but I feel palpitations, shot of breath,and brain fog....just wondered if this is the new 'norm'...or will come in waves? So frustrating.... Quote Link to comment Share on other sites More sharing options...
lewis Posted January 9, 2016 Report Share Posted January 9, 2016 Interesting Metoprolol did nothing for me but propranolol helped. Regardless of what I am taking, if my nervous system is affected by something it will thrown out of whack. I can't handle any stress. Also I don't know if it helps but I have found some things that make everything out of whack. They may not be the same for you but maybe it will help so I thought I'd share. Any gluten and any chemically made vitamins specially b vitamins and folic acid. Also occasionally msg. I can't take any multi vitamins and don't take supplements, just do better without them.Waves is a good way to put it, I always seem to go up and down for almost no known reason. It's fun to manage isn't it? Quote Link to comment Share on other sites More sharing options...
Faye Posted January 9, 2016 Author Report Share Posted January 9, 2016 We have low/ no gluten due to my daughters GI, so maybe that is a plus and I don't take vitamins but good to know to try and keep in mind. For a person who likes to plan, this sure is a challenge...yes and no and sometime yes and sometimes no....this is just the start of my journey....goes against the grain for people like me who like to know the plan....Geeze I better take surf lessons for POTS, for these 'wipe outs'...gotta laugh...and shake my head...sad but nice to know others have the 'surprise' grab bag too....A few months ago, I would have said you just need a hot tub, and a glass of wine... And relax...these day that would just send my HR through roof.... ugh Quote Link to comment Share on other sites More sharing options...
stephsurf Posted January 9, 2016 Report Share Posted January 9, 2016 I was on propranolol but it didn't help a lot with high HR. Last Wednesday Dr changed to baby dose of metoprolol 12.5 mg 2x a day...it actually seems to be more helpful in short time, but sometimes if I try to do/ have a 'normal' day. Work, floor exercise,laundry ect... No matter what ( compression shock, high sodium, well hydrated), laying flat 90/95 is a low as she goes, I know that is ' medically ' ok but I can feel my heart pounding in my throat...when I don't do as much, it might be 75/80.. I know it's not much difference but I feel palpitations, shot of breath,and brain fog....just wondered if this is the new 'norm'...or will come in waves? So frustrating....It seems to be that some people do super well on beta blockers and they help a lot and to others they just make them feel even sicker or just generally not well on the other extreme - the latter was most definitely me. I'd probably tried a good three to four different beta blockers before I deemed them just not suitable for me, with others making me feel slightly better in terms of my pots symptoms but making me feel very strange in terms of other side effects. I personally found that although some of them really helped to lower my heart rate my body just didn't quite agree with this. A possible explanation for this and something I have posted on another thread was something I was told by my cardiologist at the time when I was really ill. Basically if you have the tachycardic symptoms of POTS this is because your body is trying to make up for your low or unstable blood pressure - natures way of trying to correct the problem I guess. Taking a beta blocker may make us feel less tachycardic but as a result this is preventing the same amount of blood reaching the brain and muscles which is the very purpose of the high heart rate causes by POTS for whatever reason this may be albeit sometimes this can feel unnecessarily high. As a result you are going to feel tired and short of breath and you might feel like you can't do as much activity before feeling short of breath. These are actually side effects of beta blockers themselves though and I'm sure you can see for this why you might be feeling the way you do, it definitely rang true for me. Likewise 90-95 doesn't seem too bad lying flat - for me that seems to be my normal unless I'm lying completely still and not doing anything but shutting my eyes. Although I am somewhat doing a lot better than I have been and able to live a relatively normal life now I do think part of the struggle is getting used to those symptoms in part and not having such a stress response when things do get a little worse which I can totally empathise is not an easy thing to do. Sorry for rambling I hope this helped you in some way! Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 9, 2016 Report Share Posted January 9, 2016 I definitely have good days and bad days with no rhyme or reason to it. And a morning but start out good and the afternoon could totally tank, and, vice versa.I have found that certain activities, or the way I accomplish certain activities can be a trigger. For example, carrying a hard laundry basket up and down the steps was a problem because I had to hold my arms out in front of me (and steps aren't really a POTSIEs friend anyway.) So I tried getting a large laundry bag that has straps I can put over my shoulder like a purse to carry. I am much more successful with the bag.I've learned to conserve my energy by leaving a reusable grocery bag at the top and bottom of the stairs. I put things in it that need to go up or down. That way, I don't forget something and have to make extra trips on the stairs.Dusting with a cloth bothers me because of the subtle, repetitive bending over and standing back up. I now use a Swifter duster that has an extendable handle so it reduces those little orthostatic changes that set me off. My roomy does it now, but before he started renting, I had been using a wet mop like you use on hard floors to clean my tub nd shower surround. Bending over to try to do that was the end of me every time.So, I still have bad days but I've learned to try to minimize the aftermath of my activity and conserve energy by making little adjustments here and there. That way, dusting doesn't ruin my whole day. Quote Link to comment Share on other sites More sharing options...
Faye Posted January 9, 2016 Author Report Share Posted January 9, 2016 I'm just so use to always moving and doing, that having to modify and change to a slower different pace of life is tough....I just want to 'do' and I suppose with time I will learn that ' do' is going to happen just need to know it may not happen as fast or as often or different...getting use to the idea that no matter what could be a bad day/ hours,ect is a hard pill to swallow....being a care taker myself for decades, I can be accepting of limitations and adjustments and roll with no patterns....but that was easier because I could do it all...so it didn't matter....now I can't be super women, and it bothers me....tho I known I am doing my personal best, and logically understand... The acceptance is a struggle when I need or really want to do.....i know I will be ok...but suppose just may need to vent....possibly often.... Quote Link to comment Share on other sites More sharing options...
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