Does Salt Make A Difference For You?

[kclynn]

All the Drs. push salt, salt, salt., water, water, water. My son doesn't seem to be able to tell the difference of when he has lots of salt or when he doesn't. He does drink lots and lots of water, has for the last few years because of intense thirst. I am pretty sure that water just went throught him and he started to really improve on the florinef and Midodrine. But the salt? He can do some days hardly eating and feel pretty good, other days he eats more and gets a lot of salt and even salt tabs, but feels bad. On days when he eats hardly anything and feels bad I try to supplement his sodium in his water, salt tabs (after he at least drinks milk or eats a little yogurt not empty stomach) but he never feels any better as a direct result of salt.

Anyone else wondering about the salt thing? Not sure quite what to think of it and been wanting to ask here for awhile.

[HopeSprings]

I just recently tried it for a few weeks with the salt pills and I also pour lots of salt on my food (just crave it). I didn't notice any change whatsoever with the pills. The Dr. told me to just take 1 pill a day - so it's possible it just wasn't enough, but I kinda doubt it.

[misstraci]

I've also wondered about the salt thing. I don't take salt tabs nor have I tried them but I tend to try and eat salty foods and salt my food. I can't tell a difference personally for example, today for lunch I had a can of chili that was filled with mega sodium and a bag of chips (healthy I know) but I still felt miserable afterwards

[hholmes13]

kcmom, I've been wondering the same thing. (I posted something similar around the same time as you.) I agree...I feel like all my neurologist talks about is salt. It honestly gets a little frustrating. I hope he's right and that it will help. I've just started the salt pills today, so maybe I'll be lucky and notice a difference. However, as of now, I haven't been able to tell a difference if I drink gatorade or eat really salty foods. I'm not a huge fan of salt, so it's hard for me to get a lot of it through food. I guess if it's going to make a difference, the pills are an easy way to get a lot of it. I'm interested in seeing what others have to say.

[songcanary]

It seems to help me a lot. About four years ago when I first started researching my symptoms, I came across an article that mentioned it. I was SO ill at the time I took a teaspoon in a glass of water and I could literally feel it working. Of course, I wasn't diagnosed at the time so I discontinued extra salt because all the talk was 'low sodium this, low sodium that'. I thought it was bad for me.

A year ago at diagnosis my rheumy told me to push fluids and salt and it has made a huge difference. I have had some short term relapses which I can't explain, but the few times I did stop salt, I felt lighheaded again. So I put 1 teaspoon in 2L water and chug away all day. BTW, my BP doesn't really go up much, but I am not getting the lightheadedness, at least for now. Can't explain that one, but I'll take it!

[ramakentesh]

Some suggest that it helps. But POTs is caused by a variety of very different mechanisms - some that excess salt may help and some that it would definately NOT help.

[abetterjulie]

It did not help for me. I also think that a lot of docs are being careless in telling their patients to take in more salt without being specific with amounts. I made myself very sick by taking in too much when I first got a diagnosis.

I think it probably only helps if the cause is related to hypovolemic states, but I could be wrong about that.

[Christy_D]

We can't tell if it helps my son or not. He takes the salt tablets, but couldn't say one way or another if they do any good since he is still continually sick. I can tell when other meds help or not, but not sure on the salt.

Christy

[Lenna]

I think that Florinef and salt tablets go hand-in-hand. I don't think that there's any point in taking Florinef if you're not getting large amounts of salt.

[scarfgirl]

Salt never did anything for me. Neither did fluids. I finally quit the salt/fluid thing as it didn't help the wooziness, and woozy people can't get up to pee 20 times a day!

[yogini]

It takes a while for salt to build up in the system and so what you have that day doesn't necessarily kick in right away. I drink broth every day,twice a day, and if I miss a couple of days I might still feel fine. But a few days later all of a sudden my symptoms get worse and I know I need to get back in my routine. If florinef is helping your son, he can probably benefit from "extra" salt in his diet. By the way, that doesn't mean he has to kill himself adding salt to every little thing - either take the pills (if he can tolerate them - I can't) or find salty foods he likes. You also have to be careful with the fluids, because too many fluids can wash out the salt. I know it is all very confusing!

[Lenna]

There is something called nuun. It comes in tablets. You add one tab to 16 oz. of water and it dissolves - fizzes like Alka Selzter. It has loads of salt and other electrolytes. It's supposed to give you the perfect balance of water, salt and electrolytes. It comes in different flavors. My son likes the lemon/lime. It is promoted for athletes. You can buy it online or at some sports stores. My son buys it at Marathon Sports and they give him a student discount. I don,t know if that is a national chain. Anyway, it's a pleasant way for him to get some extra salt, and it doesn't have a lot of sugar like Gatorade.

[jekecana]

I have 2 kiddos on the high salt, high fluid diet.. I don't notice a difference with the salt or not.> I do notice when they don't drink alot though..

[StacyRN]

Doesn't do a thing for me. I have Hyperadrenergic POTS and do not have low blood volume or low bp.

[Birdlady]

Unfortunately salt and florinef does nothing for me even though my aldosterone is low.

[issie]

Salt lowers the aldosterone levels even lower.

Salt isn't good for me - with high bp and fluid building - not a good combo. It could also possibly damage your kidneys.

[hilbiligrl]

Unfortunately salt does nothing for me that i can tell. But, im not officially a Pots girl.... my tilt table tests were inconclusive and done poorly. I do have DYS. Water also does nothing for me. I seem to have POTS spells though with the heart rate, bp fluctuations and standing issues....

tennille

[Connie]

My son salt loads when his blood pressure gets real low and he is having an extremely bad day. He can eat a bag of salt and vinegar potato chips and drink a lot of fluids it seems to help him. He doesn't do it often only when he is about to pass out and his blood pressure real low. He has days like this if he becomes too hot for instance.

[Lovebug]

I woke up one morning, rolled over in bed, and all of a sudden my heart started racing. I used my BP machine and my BP was 170/120 with tachycardia. This was before I was diagnosed so I ran to the ER. They told me I was dehydrated and started a 1000 mL bag of Normal Saline (this has 0.9% sodium). Being a nurse myself I questioned the nurse and said, won't my BP go UP, not down? He said, "Yea, you would think so". Well it didn't. It gradually came down and I was much better. Then came diagnosis a few months later and thus the fluid loading began. There were days I couldn't go without 80 oz of water. I don't salt load but my doc told me to alternate my water intake with Powerade Zero so that I wouldn't dilute myself too much and have low sodium (which I'm prone to).

[potsyturvy]

Salt mainly helps my bp stay up so I don't get lightheaded. I can tell a pretty big difference if I'm having lots of gray out and near-syncope symptoms and I eat a salt packet, my bp goes up and I start to feel better. It doesn't help with any of my other symptoms though. My EP-cardio told me to eat 10 grams of salt a day and to drink 60 oz of water. I tried salt tablets for a while, but they made me really sick to my stomach. I have found that putting about 3 to 4 grams of salt in a scrambled egg in the morning helps with my salt intake and keeps me from getting sick to my stomach. I also drink tons of gatorade and put lots of salt on my food. Somewhere I read that we should eat uniodonized salt for out extra salt and only have about 2 grams of iodized salt a day so I bought some uniodonized salt. Not sure if it really matters if it has iodine or not, but I heard that large amount of iodine could possibly cause other health problems.

[Libby]

I assume salt does something for me, only because I craved it like mad for years before I knew I should. I'd suck on rock salt like it was hard candy.

When I mention that increased salt is one of the treatments, it's funny how many people are like "Oh! So THAT'S why!" I was just self-medicating.

[janiedelite]

I have hyperadrenergic POTS and was told at Mayo to incorporate a high salt, high fluid intake. They said that my primary issue is blood pooling, and my body overreacts by sending out too much adrenaline. They were right! Adding lots of salt and fluids has actually lowered by BP and helped me feel better. I take in about 10 grams a day and 3 liters of fluids. I've been doing this for over 2 years now.

Like Yogini, I find that it takes 2-3 days of skimping on fluids/salt before I start to crash.

[Sarah4444]

I have hyperadrenergic POTS and was told at Mayo to incorporate a high salt, high fluid intake. They said that my primary issue is blood pooling, and my body overreacts by sending out too much adrenaline. They were right! Adding lots of salt and fluids has actually lowered by BP and helped me feel better. I take in about 10 grams a day and 3 liters of fluids. I've been doing this for over 2 years now.

Like Yogini, I find that it takes 2-3 days of skimping on fluids/salt before I start to crash.

Janie, can I ask if there are any "tricks" that help you get to 10 mg? I currently take one 1g salt capsule with every meal and also salt my food and drink G2, but I find if I try to increase from there I get quite nauseous.