DizzyGirls Posted May 27, 2016 Report Share Posted May 27, 2016 I have an issue with my daughter. She's developing an ulcer. We are trying to go off of the Florinef and use Midodrine instead, but that's not working very well, partly because he only prescribed one pill a day. That doesn't do diddly squat. She's really lightheaded, she all but passed out in the shower last night (sitting down), and her blood pressure is lower than it's been in a while. Basically feeling really lousy. Between the Florinef and the Thermotabs, her stomach is always full of acid. I was wondering if anyone had tried using baking soda in capsules as a substitute for the salt tabs? The baking soda would also help her stomach. Please don't make me dig out my daughter's high school chemistry book! Quote Link to comment Share on other sites More sharing options...
Tachy Matt Posted May 27, 2016 Report Share Posted May 27, 2016 Many people use sodium bicarbonate as an alternative to salt for three reasons: it tastes better than sea salt, helps with acid, and is full of sodium in it. However, there have been negative reports about baking soda on how it can severely damage the stomach if you drink it after a heavy meal. Also, there have been reports of some "healthy" people developing alkalosis and salt overdose form baking soda, but this may not necessarily apply to POTS patients since we need salt. When a bicarbonate (like baking soda) reacts with the hydrochloric acid in your stomach, the result is NaCl (salt) and carbonic acid which breaks apart into harmless CO2 and water to be exited out your body. (This is why many people start to burp when drinking a bicarbonate). I use to do salt tablets but stopped doing them since they bothered my stomach a lot. My recommendation to you would be to call your doctor about the baking soda and see if you can make a baking soda salty drink for her throughout the day. Hope this helped! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 27, 2016 Author Report Share Posted May 27, 2016 Thanks for the breakdown, Tachy Matt (love the name!) Her PCP was the one who suggested it, but he doesn't know much about POTS. I've got confirmation on both, now! I will be careful, though, to make sure she doesn't use it with food. I was trying to remember his analysis from our visit yesterday and you just repeated it, so thanks! Quote Link to comment Share on other sites More sharing options...
Tachy Matt Posted May 27, 2016 Report Share Posted May 27, 2016 Glad I could help. Like I said, I'm not sure why sodium bicarbonate would affect the stomach after a large meal, but I have read stuff where it just isn't the best idea. Maybe a 3:00 time frame would be best. That way it isn't directly after lunch and you still have some time before you eat dinner? Let us know how the baking soda works out for your daughter! Quote Link to comment Share on other sites More sharing options...
dkd Posted May 28, 2016 Report Share Posted May 28, 2016 Remember those school projects where you make a volcano with baking soda and vinegar? I wonder if it would cause your stomach to "erupt" when the bicarb hits your stomach acid?? Hopefully not Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 28, 2016 Report Share Posted May 28, 2016 (edited) I think that's the reason you shouldn't use it on a full stomach. All the gas produced by the chemical reaction needs room. Edited May 28, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 29, 2016 Author Report Share Posted May 29, 2016 I'm keeping a close eye on our little "experiment"! I do want to make sure this is producing positive effects and not too much gas. That wouldn't be good. Sure wish she liked salt more....would make this a lot easier. We are back to 0.1mg of the florinef. She was sooooo lightheaded and syncopatic without the full dose. Her vision was blurry all day long. She does feel so much better on it. Think we'll have to stick with some alternative for the salt tabs. Hopefully her stomach will be able to tolerate one irritating thing. I appreciate everybody's input! Quote Link to comment Share on other sites More sharing options...
Clb75 Posted May 29, 2016 Report Share Posted May 29, 2016 Have you tried increasing salt from high sodium foods? Instead of dumping salt on all of my food, I try to eat combinations of higher sodium foods. one of my favorite go to's is a turkey sandwich for lunch. Two slices of whole wheat bread have several hundred mg of sodium, plus 2 slices of deli meat have about 600-800 mg. add cheese, pickle plus any condiment and it adds up to almost 1,000 mg . This is about the same as a salt tab. I also like stir fry veggies with a sauce. I find Asian style sauces to have a lot of sodium like soy, pad Thai, curry, chutney etc. marinara and salsa have a lot too. Frozen foods and canned beans or veggies have a lot too. I buy my stuff from whole foods so it's on the healthy side, and try to incorporate these things with fresh fruits and veggies since I have other auto immune issues. I tried salt tabs, and they bloated me so bad that I had to drink so much water to flush it out. Then I wasn't hungry when it was time to eat. I was worried I was only eating salt! I started to feel better when I started eating food this way, and Florinef helped me hang on to the sodium and fluids whereas midodrine did not. Quote Link to comment Share on other sites More sharing options...
dkd Posted May 29, 2016 Report Share Posted May 29, 2016 I was thinking about higher salt food also--pickles, cheese, and pretzels. Does she like those? Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 30, 2016 Author Report Share Posted May 30, 2016 Yes, the answer is probably best found in the foods. I'm trying to juggle all these different meds - one for the ulcer that you take an hour before a meal, the baking soda capsules to take somewhere in between when you've last eaten, but not too close to when you are going to eat again, then all the rest of the meds. Uugghhh!! Clb75 - We are finding that the florinef is a much needed medicine. Don't think the cardiologist is going to be happy that we've made that determination, but trying to go off of it has totally thrown her whole system out of whack. The midodrine is helping, but I think she needs a higher dose. She only has a rx for 2.5mgs once a day. That's not enough to do anything. I do think we are going to start incorporating sandwiches again, she's been eating other things for lunch, but I am reminded that these are too important to cut out. It's been a couple of weeks since we've had Chinese food, too! dkd - Thanks for the input! Yes, pretzels! Lots and lots of them! Her esophagus starts slowing down at night, so she pushes her pills down at night with pretzels. They are dry, so it keeps the pills from melting in her throat. Funny thing you both mentioned condiments, I was looking at a can of olives the other day and was happy to discover that they have a lot of salt too! Myself, I could live on olives. Think maybe we should have these more often. The thing with my daughter is that it has to be hidden salt. She doesn't like salty foods, except pretzels and potato chips. Otherwise, you've got to hide it. Sounds like I'm back to my old label reading. Had to take that up when it was discovered that the girls were lactose intolerant. Think now I've got to be a salt detective! Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 30, 2016 Report Share Posted May 30, 2016 Canned soups of all varieties tend to be very high in sodium. A can of Progresso tomato soup is over 1000mg. Same with onion soup, minestrone. Electrolyte drinks, lunchmeats, the boxed pasta salad mixes, soy sauce, some jarred pesto, some jarred Alfredo sauce, frozen pizza. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted May 30, 2016 Author Report Share Posted May 30, 2016 Thanks Katybug! I'll check those out! Quote Link to comment Share on other sites More sharing options...
yogini Posted June 3, 2016 Report Share Posted June 3, 2016 I started with canned soups but now I use organic broth. You can buy it in cubes or paste format. The canned soups have lots of chemicals and MSG. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted June 3, 2016 Author Report Share Posted June 3, 2016 Thanks yogini! I look at all the different soup broth starters at the grocery store. I'm amazed at all the different bases for soups - hot and sour, thai, and of course, the regular stuff. I'll look for the cubes and paste next time I go! So, here's an update on the baking soda experiment. It does reduce acid and add salt, but it makes her tummy more rumbly because it creates carbonation when it hits the acid in her stomach, so we've been off the capsules and just trying to use the different high salt foods to supplement. Also, cardiologist prescribed some midodrine to try. It works some, but it needs to be more than once a day. Hopefully, when he decides to call, we'll get her on maybe three doses a day. That should give her a little bit more quality of life than what she's experiencing right now. Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 16, 2016 Report Share Posted June 16, 2016 Frozen waffles. I can't believe it.....they have .5 g of sodium per serving. Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted June 16, 2016 Author Report Share Posted June 16, 2016 Katie, This is almost as encouraging as when I found out that my love for dark chocolate was a good thing! New diet: frozen waffles and dark chocolate. You can't go wrong! Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 17, 2016 Report Share Posted June 17, 2016 I told my cardiologist it's her fault my diet is terrible because she encourages my Ramen noodles! I like really dark sea salt chocolate!! Mmmm...... Quote Link to comment Share on other sites More sharing options...
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