Dizzysillyak Posted August 5, 2011 Report Share Posted August 5, 2011 Hi ALL,You know ... I just can't get over how complicated our lives are ... It seems a lot of us have this, including me, so I was wondering how you all were treating this. Gatorade, Pedialyte, IV, water, coconut water, etc ... Recent urine tests are showing that I have moderate to slight dehydration ever time despite drinking water. FWIW though .. I just found out recently that all the water I'm drinking could actually make this worse since it flushes out electrolytes. I like the taste of fresh coconut water but it's a REAL pain to get to. And at $3 + a pop, it's too expensive. I'm not sure if the ready to drink coconut water actually has all the nutrients they say it does. I read once that the nutrients in coconut water are only available for X amount of time after it's been exposed to the air. FWIW. The fresh coconut water always made me feel hydrated whereas the other in the containers just gave me a sugar boost ... I'm just saying ... I haven't tried Pedialyte yet. http://www.livestrong.com/article/345895-what-ingredients-are-in-pedialyte/Gatorade ... I was told to drink this but I'm not happy with all the ingredients. For one, HFCS turns me into the Energizer Bunny on CRACK ... lol ... and then the dyes make me feel sick. http://www.gatorade.com/frequently_asked_questions/default.aspxhttp://www.livestrong.com/article/43161-list-ingredients-gatorade/What are you doing and is it helping ? thanks ... Dizzy ...PS .. I forgot to ask if anyone know's why we have this despite getting enough water and electrolytes in our diets ... Are there specific tests one should have done for this ? Quote Link to comment Share on other sites More sharing options...
kclynn Posted August 5, 2011 Report Share Posted August 5, 2011 My son also craves water. I think you are right about 2 much unless you can in some way replenish. He craves water. I think that is why he does good on the florinef. Gatorade has some other products now that don't have sugar, someone mentioned the packets, no flavor, add to something, and we also got another flavored G2 product that has rebiana (stevia). These were at GNC but sure you can find them elsewhere. Quote Link to comment Share on other sites More sharing options...
lindseybee Posted August 5, 2011 Report Share Posted August 5, 2011 I use emergen-c electro mix. The only downside to it is that there's no sodium in it. There is NO SUGAR though, which is awesome because Gatorade makes me hyper. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 5, 2011 Author Report Share Posted August 5, 2011 thanks ... ya'll are giving me some great ideas. I crave water too. It feels like my mouth and throat stay dry unless I drink water. And my throat will start to hurt if I don't drink. I found this on G2 Natural. Did you know it only as 30 mg of potassium in each bottle ? Which is equivalent to 1% of what we need daily. http://www.gatorade.com/default.aspx#product?s=g2-naturalI've been googling electrolyte drinks since posting this too. I had NO idea how many companies are into making electrolyte drinks ... I tried Smartwater but never noticed anything from it. I may need to look at Florinef again. Another friend recommended this to me. It's just that I haven't done well with any of the meds I tried in several years so I stopped trying ... I was drinking EmergenC nutritional drinks but stopped because while the nutrients really did help me, I never felt right after drinking these. Could be because I'm fructose intolerant .. I saw a couple of threads on how to make your own electrolyte drink ... I'm starting to realize that I'm a real pain ... lol ... d Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 5, 2011 Author Report Share Posted August 5, 2011 I use emergen-c electro mix. The only downside to it is that there's no sodium in it. There is NO SUGAR though, which is awesome because Gatorade makes me hyper.Hi Lindsey,It could be the dyes or HFCS in Gatorade making you hyper. http://www.welltrainedmind.com/forums/showthread.php?t=202939I sure wish I'd known all this when raising my hyper, unruly, sweet, lovable child ... ... d Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 5, 2011 Author Report Share Posted August 5, 2011 I keep finding nutritional supplements that sound great according to Joe Athlete but my body can't handle these due to all my intolerances. The best advice I saw so far was to eat foods with electrolytes, add salt and drink clean water. Here are the guidelines for oral rehydration therapy. The paragraphs I copied explain why we need glucose for rehydration too ... http://en.wikipedia.org/wiki/Oral_rehydration_therapyPhysiological basisFluid from the body is normally pumped into the intestinal lumen during digestion. This fluid is typically isosmotic with blood because it contains a high concentration of sodium (approx. 142 mEq/L). A healthy individual will secrete 20-30 grams of sodium per day via intestinal secretions. Nearly all of this is reabsorbed by the intestine, helping to maintain constant sodium levels in the body (homeostasis).[27]Because there is so much sodium secreted by the intestine, without intervention, heavy continuous diarrhea can be a very dangerous and potentially life-threatening condition within hours. This is because liquid secreted into the intestinal lumen during diarrhea passes through the gut so quickly that very little sodium is reabsorbed, leading to very low sodium levels in the body (severe hyponatremia).[27] This is the motivation for sodium and water replenishment via ORT.Sodium absorption via the intestine occurs in two stages. The first is at the outermost cells (intestinal epithelial cells) at the surface of the intestinal lumen. Sodium passes into these outermost cells by co-transport facilitated diffusion (symport diffusion) via the SGLT1 protein.[27] From there, sodium is pumped out of the cells (basal side) and into the extracellular space by active transport via the sodium potassium pump.[28][29]The co-transport of sodium into the epithelial cells via the SGLT1 protein requires glucose or galactose. Two sodium ions and one molecule of glucose/galactose are transported together across the cell membrane through the SGLT1 protein. Without glucose or galactose present, intestinal sodium will not be absorbed.[27] This is the reason glucose is included in ORSs. For each cycle of the transport, hundreds of water molecules move into the epithelial cell, and this brings about the rehydration. Quote Link to comment Share on other sites More sharing options...
lindseybee Posted August 5, 2011 Report Share Posted August 5, 2011 That makes a lot of sense! I can't tolerate HFCS in most things. The electro mix doesn't have any I don't think! Quote Link to comment Share on other sites More sharing options...
flop Posted August 6, 2011 Report Share Posted August 6, 2011 I usually add a tiny pinch of Himalayan salt to each glass of water (not enough to taste salty, just enough to make the water feel soft in your mouth). When I know I'm at risk of dehydration (hot weather without a/c, upset stomach etc) I drink dioralyte sachets in plain water. I avoid dioralyte relief though because it has cooked rice powder in it and messes up my stomach. Flop Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 6, 2011 Report Share Posted August 6, 2011 I FOUND I couldn't handle HFCS. When I would drink it I couldn't breathe. I now use propel zero and water . I also make health drinks with almond milk frozen bananas, strawberries, keifer, blueberries, and sometimes add coconut water and blend. ALMOND MILK has salt in it.Bellamia~ Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted August 6, 2011 Report Share Posted August 6, 2011 We were just told the same thing about water when K was discharged. Only 20 ounces of what she drinks per day should be water. Otherwise it's to be milk, gatorade, natural juice, etc; but they preferred Gatorade. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 6, 2011 Report Share Posted August 6, 2011 Depending on what BP meds your on citrus juices are all out ...Some times they forget ti tell us. Sucking on ice is good as it slowly goes into the body keeping you hydrated.Bellamia~ Quote Link to comment Share on other sites More sharing options...
jknh9 Posted August 6, 2011 Report Share Posted August 6, 2011 I do at least one bottle of Vitamin Water Zero or Sobe Lifewater Zero every day. Some of the Sobe Lifewater Zero flavors are marked as having extra electrolytes, and all of the Vitamin Waters have quite a bit. I just have to be careful about the flavors of Vitamin Water that are supposed to give you energy (like the "Drive" flavor) because the yerba mate in it makes me all tachy. I do these instead of Gatorade or sports drinks because all of the flavors of those that I've tried taste awful to me. Way too much like Kool-Aid.I haven't tried coconut water yet. I'd like to, but it's so expensive i don't want to find out I like it because I'd go broke! Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 6, 2011 Report Share Posted August 6, 2011 COCONUT WATER Goya brand is 99cents for their largest can. I showed the cardio and he liked it just would have liked the sugars to have been lower. It's chunky and I love it. Everyone SAYS I have great skin, my sister tells everyone it's the coconut water. lol I tell everyone I'm pickled from hydration and crave vinegar. I get it @ MARKET BASKET. They sell it on Amazon. If you sign up for Amazon.mom you can get free shipping on many items. You can be anyone related to buying for a child and buy other items. My sis told me about it. Bellamia~ Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 7, 2011 Author Report Share Posted August 7, 2011 I found this info this morning ... Several people post their experiences with different electrolyte solutions. BUT I also found info on OI / tachycardia here ... http://forums.phoenixrising.me/showthread.php?10696-My-experience-with-KlimasWow-whee, Klimas is impressive. Of course, she has no more clue than anyone else does about the ultimate cause of the illness, but she has a commanding knowledge of its different physiological impacts and how to counteract them. The most dramatic thing she found out in my case is that I have raging orthostatic intolerance, which I hadn't known. She gave me a tilt table test, and after six minutes, my blood pressure plummeted to 88/60. Rapidly thereafter, I felt awful and had a wave of heat and nausea sweep over me. By then my blood pressure was at 80/52. The nurse put me down before I puked.She gave me a liter of saline by IV and repeated the test. I was able to finish the repeat, though my pulse was at 108 by the end, and my blood pressure dropped briefly about every six minutes. So Klimas gave me a prescription for a beta blocker, which slows the heart rate and gives the heart muscle more time to fill, which affects some region of the heart that detects these things and regulates blood pressure. (Take that last with a grain of salt -- I was listening to this while utterly exhausted and brain-fogged.) So my instructions are to drink Gatorade or the equivalent when I first wake up and at lunch time, and to take the beta blocker. That should make a substantial difference in my ability to tolerate being vertical.One of the interesting things about that is I wasn't aware of the sensation of my heart rate going up. I was certainly aware when I felt like I was going to puke, but I haven't felt that way previously. I had a bit of a clue that I had OI because lately I've gotten short of breath when upright, but it's pretty interesting that it wasn't totally obvious to me given that I'm HUGELY orthostatically intolerant.So that's step one, and that should make a significant difference, pronto. In fact, the day after my appointment, I was feeling really, really wiped out, and although we'd hoped to go to the Everglades before going home, I just felt too awful. We had to check out of our hotel, and I was feeling so bad that I called Klimas's office and asked if I could just sit in her waiting room in one of her lovely massage chairs. Hannah, the delightful office manager, got me a Gatorade and PRESTO! I felt a thousand times better. It's particularly interesting because I was feeling awful whether I was vertical or horizontal. Gatorade rules. And over the last week, electrolytes alone have been enough to bring me back from the dead. I'm certainly not normal, but I can have a bit of a life now, which wasn't the case before the trip. I did a poor man's tilt table test on myself at home the other day just to see why I felt so bad after standing for a few minutes. My BP didn't drop like it did the last time I had a Poor Man's TTT at my docs office but my heart was racing after I'd been up for 8 - 10 minutes. I felt weak all over and I had to lay down. My BP was 93/64, heart rate was 71 while laying down and before standing. After 10 minutes my BP was 89/67 and my heart rate was 102. Tachycardia ... A few years ago when I was re-tested for OI, my bp dropped 20 pts in 3 minutes. My BP was 7?/ 5? when the nurse took it that day and was just as low the previous visit so we decided to see what was going on. After laying down for an hour waiting for this doc it rose to 125/95. It dropped to 95/75 in 3 minutes. That's when I started salt loading ... I'll have to look up beta blockers. Since my heart rate is normal lying down, I'm not sure I need it ... while laying down resting my heart rate runs between 64 - 67 normally.http://www.medicinenet.com/script/main/art.asp?articlekey=41879ok, beta blockers are ruled out ... My internet is running really slow right now so not sure when I'll be back. I switched to wireless and haven't been happy with the response time yet ... tc ... d Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 7, 2011 Author Report Share Posted August 7, 2011 I usually add a tiny pinch of Himalayan salt to each glass of water (not enough to taste salty, just enough to make the water feel soft in your mouth). When I know I'm at risk of dehydration (hot weather without a/c, upset stomach etc) I drink dioralyte sachets in plain water. I avoid dioralyte relief though because it has cooked rice powder in it and messes up my stomach. Flopthanks flop,I use Himalayan salt too. It's expensive so I only use it in my water. Good point on not using too much. I figured out the hard way that too much hurt my stomach. I looked up dioralyte sachets. http://www.auravita.com/product/Dioralyte-Sachets-Citrus.RHPO10090.htmlEach Dioralyte sachet contains: glucose 3.56 g, sodium chloride 0.47 g, potassium chloride 0.30 g and disodium hydrogen citrate 0.53 g as active ingredients.Also contains: silicon dioxide, saccharin sodium, lemon/lime flavour (citrus packs only), blackcurrant flavour (blackcurrant packs only)This also contain the ingredient Disodium hydrogen citrate. I thought this was interesting because it's an antioxidant ... but with a possibility of side effects.http://www.drugsupdate.com/generic/view/810I don't know if I can get the sachets or disodium hydrogen citrate in the states yet either.tc ... d Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 7, 2011 Author Report Share Posted August 7, 2011 Depending on what BP meds your on citrus juices are all out ...Some times they forget ti tell us. Sucking on ice is good as it slowly goes into the body keeping you hydrated.Bellamia~Hi BellaMia,Good point ... I remember hearing that Allegra can't be taken with OJ too. There are just so many things to consider. I never thought of sucking on ice but that's a good point especially in the summer.FWIW .. I took a smoothie to the beach the other day that was made with frozen pomegranate juice (my HFS has this now), banana, salt and Konsyl (we know what that's for ... lol) and I felt much more hydrated than I ever did when I was just drinking water. ... I have to tell you, my life would've been so much simplier if I didn't have CFS/OI brain and could remember all this stuff. Thanks ... D Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 7, 2011 Author Report Share Posted August 7, 2011 COCONUT WATER Goya brand is 99cents for their largest can. I showed the cardio and he liked it just would have liked the sugars to have been lower. It's chunky and I love it. Everyone SAYS I have great skin, my sister tells everyone it's the coconut water. lol I tell everyone I'm pickled from hydration and crave vinegar. I get it @ MARKET BASKET. They sell it on Amazon. If you sign up for Amazon.mom you can get free shipping on many items. You can be anyone related to buying for a child and buy other items. My sis told me about it. Bellamia~Hi again BellaMia,Hmm, I'll have to look at this. Is it coconut water or milk ? Milk is thick and creamy and has fats in it which would help your skin. Some milks have more fat than others but it's on the label. I was using the organic coconut milk in my cooking but noticed I was just getting bigger and bigger so I backed off ... The coconut water straight from a coconut is always a thick mostly clear watery consistency. Sweetness will vary depending on age of coconut. BTW. if you use fresh young coconut water make sure it's not pinkish. It's either a bacteria or fungus growing that's not good for us. I always pour it into a clear glass container and hold it up to the light.From what I've seen after buying approximately 200 young coconuts over the last 5 years, the only way to tell if you're getting a good coconut is avoid getting one where the outside is turning pink. Definitely don't buy it if you see mold on the outside or if it's wrapped in the pkg. Those with a little bit of brown bruising on the outside appear to be ok sometimes but not others. It's best to look for ones without mold and brown or pink spots on the outside. Otherwise, you can't tell until you've opened it. Luckily, my HFS will take it back if it's bad. thanks for the Amazon tip ... tc ... d Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted August 7, 2011 Report Share Posted August 7, 2011 It's a water with chunks of coconut in it. You can google the ingredients It is clear. My tummy is blowing up from anything these days. Bloating, I need to go to the gastro BAD. Something is not right. I will call my PC in the morning as my left leg is swelling also. I don't do the coconut milk because of the fats, I was taking coconut oil for a short time but it made my cholesterol jump up too high. It does have a warning about sulfates on it and if you are allergic in small print. It must preserve the coconut chunks. Some people love the chunks, others don't. I love it in a fancy glass with ice. I've gotten more people to drink the stuff, you would think I worked for the company. lol Someone at the hospital just gave me an article on coconut water being the new rage in hydration. BellaMia ~ Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 8, 2011 Author Report Share Posted August 8, 2011 I do at least one bottle of Vitamin Water Zero or Sobe Lifewater Zero every day. Some of the Sobe Lifewater Zero flavors are marked as having extra electrolytes, and all of the Vitamin Waters have quite a bit. I just have to be careful about the flavors of Vitamin Water that are supposed to give you energy (like the "Drive" flavor) because the yerba mate in it makes me all tachy. I do these instead of Gatorade or sports drinks because all of the flavors of those that I've tried taste awful to me. Way too much like Kool-Aid.I haven't tried coconut water yet. I'd like to, but it's so expensive i don't want to find out I like it because I'd go broke!thanks jknh9,I keep googling the ones you all are recommending but haven't gotten to these yet. Thanks for the warning on the yerba mate. I found an bottled drink at Vitamin Shoppe the other day with gurana in it too ... good thing I read labels ... I used to love the taste of Gatorade but I think they changed it. Or maybe I changed ..I definitely found coconut water addictive. I'm going to try the Goya one recommended since it has bits of coconut in it too ... yum ... I would prefer a fresh young coconut but those are waaaay too much trouble. And expensive ... I saw coconut water at BJ's the other day but don't remember the price .. I've been looking closer at dioralyte too ... http://www.dailymail.co.uk/health/article-420582/What-GP-takes-hangover.htmltc .. x Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 8, 2011 Author Report Share Posted August 8, 2011 It's a water with chunks of coconut in it. You can google the ingredients It is clear. My tummy is blowing up from anything these days. Bloating, I need to go to the gastro BAD. Something is not right. I will call my PC in the morning as my left leg is swelling also. I don't do the coconut milk because of the fats, I was taking coconut oil for a short time but it made my cholesterol jump up too high. It does have a warning about sulfates on it and if you are allergic in small print. It must preserve the coconut chunks. Some people love the chunks, others don't. I love it in a fancy glass with ice. I've gotten more people to drink the stuff, you would think I worked for the company. lol Someone at the hospital just gave me an article on coconut water being the new rage in hydration. BellaMia ~So why am I all of the sudden getting the urge for a frozen strawberry daiquiri ? thanks for the tip on the sulfates ... Sorry to hear you're getting bloated regularly. Hopefully you made it to the docs today to check on this and your leg. For stomach bloating, I've found that a good probiotic helps me. I use Megaflora since it's gluten and dairy free and loaded with 50 billion bacteria. At this point, I find that taking 2 twice a day remedies bloating. But the raw onions I was putting in my guacamole were apparently causing it ... hope you feel better soon ... tc ... d Quote Link to comment Share on other sites More sharing options...
Steph Posted August 15, 2011 Report Share Posted August 15, 2011 NUUN tablets are inexpensive, easy to carry, and come in a variety of flavours. You just add them to a glass or bottle of water and let them dissolve. They fizz like alka seltzer tablets, so you don't need to stir, which is nice. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted August 17, 2011 Author Report Share Posted August 17, 2011 Wow .. thanks everyone ... what a great thread this is ... I keep coming back to see what I can try next .. I tried the Emergenc electrolytes but it upset my stomach. It reminded me of alka seltzer and I never could take that ... I'm not drinking as much water as I was and that seems to be helping. I'm into smoothies now .. I made one with 1/4 cup cilantro, 1 tsp key lime juice, pomagranate juice, banana, sea salt and rice protein that I loved ... .. sounds weird but I like cilantro. I think it was someone here that mentioned thermotabs and I keep meaning to pick some up ... thanks again ... tc ... d Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted September 11, 2011 Author Report Share Posted September 11, 2011 Bumping for my freinds at pr ..Btw. I.m still looking at this but I read that there's a connection between potassium and aldosterone. Aldosterone is linked to bp regulation ... And it appears that electrolytes play a large role in heart rates. So maybe some of us are chronically low on electrolytes. I know I am but I.m not sure why yet ... Tc ... D Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted September 11, 2011 Author Report Share Posted September 11, 2011 Rats ... I don.t have an edit option on my tablet ...I forgot to mention that i'm using 2 bananas a day for my potassium. Nosalt pushed my adrenals into overdrive. I.m making smoothies and drinking these throughout the day and only drinking a few glasses of plain water. I feel a lot more hydrated this way ...Tc ..d Quote Link to comment Share on other sites More sharing options...
issie Posted September 17, 2011 Report Share Posted September 17, 2011 Bumping for my freinds at pr ..Btw. I.m still looking at this but I read that there's a connection between potassium and aldosterone. Aldosterone is linked to bp regulation ... And it appears that electrolytes play a large role in heart rates. So maybe some of us are chronically low on electrolytes. I know I am but I.m not sure why yet ... Tc ... DFYI = type in Aldesterone and Renin and you'll get to some extensive research on this, on the site.Issie Quote Link to comment Share on other sites More sharing options...
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