bumpkin Posted June 7 Report Share Posted June 7 Why's it have to be such a struggle to replenish blood volume once it gets low enough to exacerbate symptoms? Are there any tricks to giving it a boost at home? The chest aches are driving me nuts It's so tedious I try to take in enough salt water and some coconut water and other food sources of electrolytes through the day to help keep it balanced, and it's usually enough for the most part, but sometimes hormones are just gonna do what they want regardless.. The chest pressure and achiness once it's gotten too low feels terrible, ends up feeling like my heart's ready to break down from the moment I wake up to the time I go to bed. I wore some compression leggings while I worked on stuff for an hour or so earlier, but then my blood pressure went up a bit too much.. just can't win, lol. Was way too wiped out/fatigued to get out for a saline IV yesterday, really could've slept all day long if I'd let myself, resting pulse was dipping into bradycardia territory.. But whenever it gets this rough, going for an IV is the only thing I know how to do to set it right again. Going to make sure to drag myself out for one in the morning since it's already been a few days of this. Would like to have other ways to turn it around at home.. but maybe times like these it's just way too much to try to correct by drinking fluids? I know I've read of that being the case for some members on here, but I've been wondering what else might've worked for folks to help resolve the low blood volume chest aches when it gets bad. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 7 Report Share Posted June 7 I generally bolus cold water or a sugar free drink mix in the water. I also make sure that i do not become dehydrated for whatever reason. Yes i do have episodes where drinking more fluids does nothing but this is usually from some other stressor. Eating foods higher in iron can help with blood volume in the longer term. @bumpkinhave you tried any of the hydration drink mixes yet? Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 7 Author Report Share Posted June 7 3 hours ago, MikeO said: I generally bolus cold water or a sugar free drink mix in the water. I also make sure that i do not become dehydrated for whatever reason. Yes i do have episodes where drinking more fluids does nothing but this is usually from some other stressor. Eating foods higher in iron can help with blood volume in the longer term. @bumpkinhave you tried any of the hydration drink mixes yet? Thanks for the response Mike, I will have to try the cold water bolus, it's probably been counterintuitive to get enough water down when it happens cuz of the GERD messing with appetite and stomach upset, but have to remind myself that the need to rehydrate and restore blood volume has to outweigh the nausea concern in the moment.. It's easy to deter ourselves from doing something that could help us feel better when we know it can trigger other immediately uncomfortable symptoms. I do try to focus on getting iron regularly too between diet and supplements, makes sense since it's like a building block. My organic acids test results pointed to low copper so I try to get that in a good supplement along with the iron, I often wonder if it's been enough. Had iron infusions years ago and those were way too much, and straight-up iron supplements were too hard on my stomach.. so seems like I'm still trying to find the happy medium there. Maybe the hit from hormones/stressors has really been too much this week. The weather's been rough with the barometric pressure drops lately, and the 85-90* temps def aren't helping, been trying to plan my errands better to reduce the time spent out in the heat, the days I was out in it I thought I stayed hydrated but had the post-exertional malaise for a couple days after. Back before the dysautonomia symptoms came on real strong, I used to do really well with LMNT packets and Body Armor drinks, but once the symptoms got wacky I could no longer tolerate them. Tried switching to Liquid IV after that and had a bad reaction to that too.. I can understand all the B vitamins in the Body Armor and Liquid IV maybe being too much (turns out those of us with mold exposure tend to react poorly to B complexes, I'm sensitive to even the fancy methylated kind), but LMNT is just salt/magnesium/potassium and stevia I think.. still baffled at why that one would rev my system, but maybe I'm blaming it for something carbs could've done those times.. hoping to try it again eventually. Ever since then I've just kept shakers of pink himalayan salt within reach and drink around 20oz coconut water a day, have some broth or whatever and aim to get the rest from meals. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 7 Report Share Posted June 7 1 hour ago, bumpkin said: Tried switching to Liquid IV after that and had a bad reaction to that too Before i knew i had a blood sugar problem i had tried this. Had a bad go of it. I assume there is a ton of sugar in it. For your GERD i would talk to your Doc to see if a proton pump inhibitor would be right for you. I have had very good success with the acidity stomach and nausea. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 8 Author Report Share Posted June 8 On 6/7/2024 at 12:05 PM, MikeO said: Before i knew i had a blood sugar problem i had tried this. Had a bad go of it. I assume there is a ton of sugar in it. For your GERD i would talk to your Doc to see if a proton pump inhibitor would be right for you. I have had very good success with the acidity stomach and nausea. The Liquid IV I tried was supposed to be 11g sugar per stick, at a glance that doesn't seem excessive but I still dunno what they're going for there.. a lil bit of sugar doesn't concern me much, but I'm not sure why they felt the need to put it in it to begin with? Probably to help with taste, but they claim the sugar's in there to boost hydration. Ohhhhh I won't touch PPIs again lol.. can be a bit of a double-edged sword. Glad to hear they got you on one that works for ya. They had me on 20mg daily for 7 years.. found out much later that it's really not meant to be taken more than a couple weeks at a time. And then I had food poisoning where the nausea hadn't resolved for weeks, felt awful so the white coat said "let's double your PPI dose to 40mg" and my instincts said "this sounds like a terrible idea.. but a dr wouldn't suggest it if it wasn't safe, right?" Could never go back down to the 20mg dose after that. Finally came off the PPI a few years ago with the help of a functional medicine dr (I'd tried unsuccessfully to come off it a few times over the decade) and the rebound reflux when I stopped taking it was so much worse than my heartburn ever was.. felt like I had stomach acid up to my eustachian tubes. Functional doc back then had me take a ginger/5-HTP/B6/acetyl-l-carnitine supplement, and that helped a ton with the transition off of it where limiting fatty and acidic foods alone wasn't cutting it. So I did start microdosing that supplement again recently in hopes that it'll help with both the digestion and overall gut/brain health.. full dose felt like too much this time so I'll have to work up the dose slowly to get the full benefit. Need to get the GERD manageable again so the ol' appetite isn't thwarted by it. All in all I'm thinking I'm just super wiped out this week, did go for a 1.5 liter saline IV but it still wasn't enough to kick the fatigue, which seems crazy since it usually helps.. but I know the summer weather is a lot to manage in this condition, that alone is probably enough to make me way tireder. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 9 Report Share Posted June 9 15 hours ago, bumpkin said: All in all I'm thinking I'm just super wiped out this week, did go for a 1.5 liter saline IV but it still wasn't enough to kick the fatigue, which seems crazy since it usually helps.. but I know the summer weather is a lot to manage in this condition, that alone is probably enough to make me way tireder. Must be the weather. Last few days i have been really tired and have no appetite. even lost two pounds. Hope i can get back to normal soon. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 9 Author Report Share Posted June 9 Just now, MikeO said: Must be the weather. Last few days i have been really tired and have no appetite. even lost two pounds. Hope i can get back to normal soon. I hate that it's screwing with us both, but I appreciate reading that it's probably more to do with outside factors... I noticed I'm down several pounds this week too, and those were my dang security blanket pounds (had suddenly lost 15-20 at the start of this, gained it all back and then some and decided I'd hang on to the extra just in case my metabolism ever went nuts again). Might need to get creative with bumping up calories to make up for it. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 9 Report Share Posted June 9 20 minutes ago, bumpkin said: Might need to get creative with bumping up calories to make up for it. Calories work.....Eat a whole pack of Klondike bars and you will pack on the pounds Lol. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 9 Author Report Share Posted June 9 7 minutes ago, MikeO said: Calories work.....Eat a whole pack of Klondike bars and you will pack on the pounds Lol. 😂 Aw man.. Back when I first moved out on my own at 18, I was having ice cream for breakfast as often as I felt like, once ate an entire box of Healthy Choice ice cream sandwiches (think they were on sale) and got so sick I couldn't believe it, I mean a Healthy Choice food should be completely innocuous 🤣 Went to call outta work with a really bad stomach when the boss reminded me it was truck day.. guy had IBS (and had been hospitalized for it) so he asked me to just come in and help unload and take whatever breaks I needed.. I managed with my horrible belly ache and still wasn't sure what got me til later that day when I learned that the healthy ice cream I housed that morning contained sorbitol, that the box actually had a warning on there about it, and that I'd essentially eaten a box of laxatives 💀 Quickest way to cure a kid of nonsense eating habits 🤣 Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 9 Report Share Posted June 9 2 hours ago, bumpkin said: sorbitol Haha....i did have a few nurses warn me about sorbitol. they pretty much cited the same as you experienced. Quote Link to comment Share on other sites More sharing options...
Water Lover Posted June 9 Report Share Posted June 9 On 6/8/2024 at 5:44 PM, bumpkin said: The Liquid IV I tried was supposed to be 11g sugar per stick, at a glance that doesn't seem excessive but I still dunno what they're going for there.. a lil bit of sugar doesn't concern me much, but I'm not sure why they felt the need to put it in it to begin with? Probably to help with taste, but they claim the sugar's in there to boost hydration. It’s not just about taste; it really does help with hydration. Glucose facilitates the absorption of water and sodium in the small intestine. That’s the principle behind the lifesaving WHO oral rehydration solution used, for example, for the treatment of diarrhea in the developing world. (Apparently sucrose is also effective.) Adding some sugar to the mix should indeed maximize hydration, so it’s a reasonable thing for them to do. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted June 11 Report Share Posted June 11 @bumpkin, I didn’t see your current hydration and salt intake? What are your sodium and water intake goals? Do you measure/track your intake? It took me a year at 10 grams of sodium and 8 Liters of water to rehydrate! Since then I’ve been stable at 4 grams Sodium and 4-5 Liters water a day. Everyone's numbers are going to be different of course. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 12 Author Report Share Posted June 12 On 6/11/2024 at 3:20 PM, MaineDoug said: @bumpkin, I didn’t see your current hydration and salt intake? What are your sodium and water intake goals? Do you measure/track your intake? It took me a year at 10 grams of sodium and 8 Liters of water to rehydrate! Since then I’ve been stable at 4 grams Sodium and 4-5 Liters water a day. Everyone's numbers are going to be different of course. A year to rehydrate! It's like we're living in a cartoon 😭 Thank you for the clarification @MaineDoug, I'm so glad you posed that question because while I aim for around 6 grams of salt water a day, now that I've paused and redone the math on the actual liters of water.. It may seem like it's been a lot, but I realize it's actually been about half as much water as I ought to be taking in in a day.. There are times when my blood pressure gets a little too high for it (and that can feel as bad as bp being too low) but that makes sense now cuz I was definitely salt loading without backing it up with enough water. Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 12 Author Report Share Posted June 12 On 6/9/2024 at 7:40 PM, Water Lover said: It’s not just about taste; it really does help with hydration. Glucose facilitates the absorption of water and sodium in the small intestine. That’s the principle behind the lifesaving WHO oral rehydration solution used, for example, for the treatment of diarrhea in the developing world. (Apparently sucrose is also effective.) Adding some sugar to the mix should indeed maximize hydration, so it’s a reasonable thing for them to do. Ahhh I see, yeah come to think of it, I'm pretty sure some of the generic pedialytes I used to drink over the years had sucrose in them.. And that was never about taste, that generic flavor was all zinc lol. Quote Link to comment Share on other sites More sharing options...
MikeO Posted June 12 Report Share Posted June 12 2 hours ago, bumpkin said: but that makes sense now cuz I was definitely salt loading without backing it up with enough water. don't want to salt load without being being well hydrated. just a fyi. Quote Link to comment Share on other sites More sharing options...
Water Lover Posted June 12 Report Share Posted June 12 On 6/11/2024 at 3:20 PM, MaineDoug said: It took me a year at 10 grams of sodium and 8 Liters of water to rehydrate! Since then I’ve been stable at 4 grams Sodium and 4-5 Liters water a day. Everyone's numbers are going to be different of course. @MaineDoug Very interested in your experience! How did you know when you were sufficiently rehydrated? How did you approach adjusting your “dosing” of salt and water? Quote Link to comment Share on other sites More sharing options...
bumpkin Posted June 13 Author Report Share Posted June 13 19 hours ago, MikeO said: don't want to salt load without being being well hydrated. just a fyi Appreciate the reminder Mike, yeah I must've gotten lax with my routine without realizing it.. the higher bp last week really spooked me, but it didn't click how it would've been related til reading about the many liters of water it takes to keep things in balance. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted June 15 Report Share Posted June 15 @Water Lover, First I did a lot of research on hydration, then discussed it with my PCP. I set up a system to monitor and track my water and sodium intake. Then I gradually increased water and sodium, tracking this and matching it to signs and symptoms. During the process I was afraid that the effects would be subtle. But in reality the change was dramatic. I had been bedridden for 16 months due to symptoms of low fluid volume, BP and HR extremes. But when I reached 2 gallons of water, 10 grams salt, I WAS ABLE TO SIT, STAND AND WALK, without extreme BP changes, for the first time in 2 years! I had been in “pre-load” cardiac failure, there wasn’t enough fluid volume to fill my heart chambers before each beat. This gave me angina, it felt like trying to squeeze an empty bag! After one year at 2 gallons water/10 grams sodium (It was a full time job to do this), I was able to slowly wean, and now it takes 1 gallon of water and 3 grams of sodium to keep me stable! After 5 years of dangerously unstable BP, with lows of 60/30 and highs of 210/110, I’m now remarkably stable with values of 110/70 and the highest numbers I see are 130/85! I’m a new man! Good luck in finding your own “numbers”! Quote Link to comment Share on other sites More sharing options...
TCP Posted August 21 Report Share Posted August 21 That’s great news! Quote Link to comment Share on other sites More sharing options...
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