Finnmin Posted June 12, 2017 Report Share Posted June 12, 2017 I have some good news from my husband and some bad news: NaCl sodium tablets and fluids together are the FIRST treatment EVER to show any improvement in his health! He spent only 45 minutes in bedrest yesterday, the usual average is 4 hours! As usual, he didn't notice the improvement himself till I pointed out the fact to him, because he's a notorious overexcertionist: whenever he's able to stay up, he stays up till he's presyncopal.... So hypovolemia seems to be the key, but the bad news is: his stomach can't handle the sodium tablets! He's got acid reflux, so he gets terrible heartburn and vommiting happens due to it. The sodium tablets are from the pharmacy, "63% NaCl 500mg" reads on the packet. He gags at salt water and overly salty food, but will try them to avoid bed. I'm just afraid that no matter what form the sodium is, it will irritate his stomach. Any ideas? Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted June 12, 2017 Report Share Posted June 12, 2017 Is he taking the salt tablets with food? I remember seeing something about upsetting your stomach with those so I have never tried. Food and/or maybe kefir are about the only things I can suggest. Quote Link to comment Share on other sites More sharing options...
haugr Posted June 12, 2017 Report Share Posted June 12, 2017 That's great news! Gatorade, Propel, Pedialyte, or Nuun tablets are decent ways to get sodium. Quote Link to comment Share on other sites More sharing options...
angelloz Posted June 12, 2017 Report Share Posted June 12, 2017 For myself...salty foods like cottage cheese, chips etc...help. Also, the electrolyte drops for water help but I don't put in enough to make it taste overly salty. Plenty of food with any salt increase helps me. I understand the issue because I have hypovolemia but too much salt causes migraines, which causes vomiting which defeats the purpose, so it is a delicate dance. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 12, 2017 Report Share Posted June 12, 2017 Awesome news! I rarely can tolerate sports drinks, so milk is my electrolyte drink of choice. It has more electrolytes than any of the sports drinks out there - and fat free milk is unlikely to bother his stomach. @Finnmin, if salt/water loading works, then maybe raising the head of the bed would work too? It is supposed to reduce sodium loss overnight, if I'm understanding correctly. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted June 13, 2017 Author Report Share Posted June 13, 2017 Thank you for the tips! We will have to try everything, acid reflux is trying to take away the success we've had with salt. He needs about two teaspoons of salt and 3 liters of fluids to feel better, it's surprisingly hard to add that much salt into food and drinks without making him sick of the taste and throwing up stomach acid! But we're fighting hard, we'll find a way! Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 13, 2017 Report Share Posted June 13, 2017 Perhaps he needs to consume the sodium over more time? What happens if you break it up into 3 or 6 times per day? Have you had him drink 3 liters water at the same rate as if he'd taken salt tablets to isolate variables and see whether the water or the salt is the problem? I get sick from drinking water, just a thought. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted June 14, 2017 Author Report Share Posted June 14, 2017 19 hours ago, BuffRockChick said: Perhaps he needs to consume the sodium over more time? What happens if you break it up into 3 or 6 times per day? Have you had him drink 3 liters water at the same rate as if he'd taken salt tablets to isolate variables and see whether the water or the salt is the problem? I get sick from drinking water, just a thought. Those are good points, we did discover that plain water gives him heartburn, which doesn't make sense to me, but anyhow, if 1/3 of the water is berry juice, he can handle it. Today I'm giving him a total of 6 sodium tablets, 1 tablet every 2-3 hours, pulverized into warm milk - and no sign of heartburn yet! I'm cautiously positive that this might work! Quote Link to comment Share on other sites More sharing options...
Finnmin Posted June 18, 2017 Author Report Share Posted June 18, 2017 Update to our salt loading project: salt in milk stays down moderately, but we're still trying to find a way to get the reflux under control. POTS is fighting us back, by giving my husband a resting pulse too low (50-60) to function properly, in addition to high blood pressure (160/100). Does anyone know if salt can cause bradycardia? Before this experiment, a pulse under 64 was rare. Quote Link to comment Share on other sites More sharing options...
Weyland Posted June 27, 2017 Report Share Posted June 27, 2017 That is some high blood pressure . Does his heart rate increase a lot when standing or just the blood pressure ? If I stand in place my hr shoots right up but not much BP increase.... Quote Link to comment Share on other sites More sharing options...
Finnmin Posted July 3, 2017 Author Report Share Posted July 3, 2017 His heart rate goes up 28-40 bpm when he stands up, standing blood pressure has been normal now! We have been unable to continue high dose sodium because of the acid reflux, but since oddly my husband's blood pressure is normal now, I have high hopes that he might be able to take fludrocortisone to fight the hypovolemia! I'm quite sure now that his bradycardia happens due to low blood sugar and not high sodium. While refusing to eat for hours because of his desire to lose weight, his pulse was 43-60! It's still so hard to figure out this illness... Long daily bicycle rides seem to lower his blood pressure, but walking uphill and chopping firewood at our summer cottage gave him really bad hypertension! One would think that all physical activity lowers blood pressure, but something bad happens when my husband uses his upper body muscles. What is the logic in this?! He still has lots of muscle in his uper body, his legs seem thin. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted July 6, 2017 Report Share Posted July 6, 2017 @Finnmin, I was on a long car trip with my husband and we got to talking about POTS. He was able to explain why he thinks salt causes nausea. When there's a lot of salt in the stomach, the body pulls fluid in to dilute it. This causes a temporary *drop* in blood volume and nausea. interesting! I thought of you while he explained! It's normal for exercise to increase blood pressure short term, while the long term effect of exercise is to reduce blood pressure I believe. Chopping wood is an activity with little leg movement - little muscle pump activity pushing blood back up to the brain. Bicycling is seated plus lots of leg muscle movement. With the blood getting up to the brain, the body doesn't have to raise blood pressure to compensate. I think If his blood pressure is below the point of hypertensive crisis and his resting blood pressure is fine, it's likely normal. You can ask his doctor about it too. I learned that baroreceptors reset after 24 hours after a higher or lower blood pressure. Also thought of you when I read that. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted July 6, 2017 Report Share Posted July 6, 2017 Sorry if this is something your husband has already tried, but I've had terrible acid reflux all my adult life long before POTS and I take omeprazole 20mg which keeps it away. I live in the UK so this drug may go by a different name in the US. I mix 1.5 teaspoons of sea salt in 1.5 litres of water 7 diluting juice and drink throughout the morning, and another half teaspoon in the same in the afternoon. Drinking my salt this way I hardly taste it, get it in gradually and with the omeprazole I still don't get heartburn. I would definitely recommend trying omeprazole and mixing sea salt in a nice tasting drink. I'd hate the idea of swallowing salt pills. Cycling on my recumbent bike is also the only exercise I tolerate, I can't exercise upright. By the way I tried fludrocortisone (unfortunately it didn't help me and also caused headaches and other problems related to sympathetic excess so I stopped taking this), but it did give me the worst stomach pain when I first took it although I had been in hospital and missed my omeprazole. I didn't have any further heartburn whilst taking both, so I would suggest your husband should definitely get a prescription for an acid suppressing medication if trying fludrocortisone. Quote Link to comment Share on other sites More sharing options...
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