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dizzytizzy

Anyone not doing extra salt?

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Hi all,

I know the standard advice for POTS and certain types of dysautonomia is to increase both fluids and salt intake. Is there anyone here who isn't doing loads of extra salt and having good results? 

I never ate a high salt diet before all this and now try to ingest my salts via pink salt sprinkled on food versus salt pills or processed foods. I feel like the increased fluids and salt combo is causing fluid retention in my abdomen which is really uncomfortable....then I feel miserable when trying to exercise because I'm literally SO full of fluid shaking around in my stomach. It just seems like the recommended salt intake (and sometimes even the water intake) is often excessive and I'm wondering how much difference if has made for people or if the exercise, meds, and lifestyle changes have been more beneficial? 

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Hi dizzytizzy, I'm sure that everyone's experience with be different on this one. For me personally, I haven't found any different in symptoms based around my salt intake so I no longer do it. If I am going to do exercise I will often take some salt beforehand in the form of saltwater, but on a daily basis I no longer increase the salt intake in my diet because it didn't have any affect on my symptoms.

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@statesof: Thanks for chiming in! I fully expect responses to be across the board on this one :) I am thinking about trialing a period without such high salt levels. I'm a bit skeptical about the low blood volume diagnosis my EP has slapped on me as there hasn't been any testing to actually confirm that.  

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Salt pills chew up my stomach so it comes for me by way of shaker or salty snacky yummy stuff.

 

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@WinterSown: Yeah, that's why I haven't ever tried the salt pills/sticks. I've heard way too much about them being hard on the stomach and also people not absorbing them properly. Plus, I'm trying to do things as holistically as possible and get the nutrients I need from food as opposed to pills. I just sometimes wonder about the efficacy of increasing salt loads so much. As the months have droned on, I feel really puffy and my stomach is distended. 

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Personally I don't count the amount of salt. I just go by what my body says. Some days I have more than others by way of table salt and occasionally pretzels. That being said my mom says I over-salt all of my food so maybe I intake more than most people. 

I do the same thing with water. I go by my body when I should drink more or not. There are days where I only drink 1 bottle of water. Others it is like 3 or 4. 

My specialist told me I should increase fluid and salt because most people with POTS has low blood volume. I am sure there are some out there that don't. 

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 In my opinion, if you aren't feeling well and your doctor has recommended more water and salt, it is helpful to try it and stick with it for a while.  It doesn't work immediately, you have to do it consistently every day and then it kicks in .  It also doesn't work  for everyone but I'd say most people find it helpful if they stick to it.  You get salt from lots of non-processed foods, like olives, and there are plenty of good posts on the forum with helpful information.  If you feel full/fluid in your stomach before exercising, don't drink for the couple of hours before you exercise.  

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As others have said I do it on an "as needed" basis.  Typically I do salt my food now (I never used to before diagnosis) but don't otherwise add salt unless I am symptomatic.  I find that if I do have symptoms salt and fluid loading helps within an hour or two.  But I also agree with what yogini says about doing it consistently, which I do if I am in any level of flare.  If it is sporadic, symptoms can also come and go.

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I don't do salt at all, and I haven't. I follow Dr. Fuhurman's diet, which is no salt, oil, fat or sugar. It has helped me immensely. I notice when I cheat that I start having problems real fast. 

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23 hours ago, StayAtHomeMom said:

Personally I don't count the amount of salt. I just go by what my body says. Some days I have more than others by way of table salt and occasionally pretzels. That being said my mom says I over-salt all of my food so maybe I intake more than most people. 

I do the same thing with water. I go by my body when I should drink more or not. There are days where I only drink 1 bottle of water. Others it is like 3 or 4. 

My specialist told me I should increase fluid and salt because most people with POTS has low blood volume. I am sure there are some out there that don't. 

@StayAtHomeMom: I've been somewhat obsessively tracking salt consumption. I don't feel like I'm necessarily in tune enough with my body to know when I need more salt vs something like more water, know what I mean? So I've just been staying in the guidelines the EP gave me. Hoping I can get to the point where I don't feel the need to track it. 

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10 hours ago, yogini said:

 In my opinion, if you aren't feeling well and your doctor has recommended more water and salt, it is helpful to try it and stick with it for a while.  It doesn't work immediately, you have to do it consistently every day and then it kicks in .  It also doesn't work  for everyone but I'd say most people find it helpful if they stick to it.  You get salt from lots of non-processed foods, like olives, and there are plenty of good posts on the forum with helpful information.  If you feel full/fluid in your stomach before exercising, don't drink for the couple of hours before you exercise.  

@yogini: I've been doing the salt/water dance consistently since March. While I've made strides, I'm unfortunately not sure if it's attributable to the salt/water or perhaps med or lifestyle changes. I'm considering doing a trial where I drop salt intake down to more normal levels and see how I feel. But then I get scared to change the routine. Argh! Drives me nuts :) 

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@MomtoGiuliana: I'm hoping to get to the "as needed" basis that you use. I've consistently improved since April of this year, but have really stabilized quite a bit over the past two weeks. I'm working on some other lifestyle/mental/emotional changes that I feel have been helpful and am considering pulling back on some of these other measures - one at a time! - to see if I can eliminate anything. 

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23 hours ago, dizzytizzy said:

 

If only salt could make me puff up like a glass of wine. I have extra salt on everything and meh, not much retention. I have four ounces of pinot gris and I'm bloated for two days. 

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2 hours ago, dizzytizzy said:

@MomtoGiuliana: I'm hoping to get to the "as needed" basis that you use. I've consistently improved since April of this year, but have really stabilized quite a bit over the past two weeks. I'm working on some other lifestyle/mental/emotional changes that I feel have been helpful and am considering pulling back on some of these other measures - one at a time! - to see if I can eliminate anything. 

You can always try and if it doesn't work re-increase your salt.  However, POTS is generally a longer journey.  You'll know for sure if you're feeling better if the improvement lasts a few months. Ups and downs which last a few weeks are normal.  What helped me when I was feeling better was to force myself to be more active and that in turn led to more improvement.  I didn't try reducing my recommended treatments until I was back to full/normal activity which was a couple years in. 

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@Nan: Did you switch to that diet after diagnosis or were you on it prior to? I had been following a low-salt/no added salt diet for about six months prior to my symptoms and eventual diagnosis. However, I was also hardly drinking any water at all for a full year preceding getting sick. I mean like less than 8 ounces a day. I just never drank anything! 

So I'm wondering if I wasn't actually largely dehydrated when symptoms came on. My EP latched onto the fact that I had been eating a low-salt diet as he said that many people end up coming to him with dysautonomia symptoms after following that type of diet. 

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@yogini: Gotcha. Thanks for the info. I think I (and we all do probably) get so excited when we have a period of improvement and that can lead to overzealousness and put us back to square one if we make changes prematurely. I'll stick with the treatments while I'm working on some of the other lifestyle improvements. I have a follow-up with the EP in late October. If I remain relatively symptomatic through then, maybe a trial of easing up on some of the meds/fluid/salt might be on table. 

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I accidentally stumbled on salt made me feel better. I just craved it bad before I knew what was going on. I would dip French fries in salt like most people do ketchup. I worried it might be too much but all of my tests are normal sodium levels. I can't imagine what it was before I ate so much. I don't dip fries as much now I just add salt to most of my meals. 

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I used to take a teaspoon and a half of salt a day, mixed with water. It made no difference whatsoever, just made the water taste horrible.  I recently switched to commercial rehydration sachets 2-3 litres a day which is a little less salt overall and a lot more palatable. It is hard to tell but I think this is marginally better in terms of retention, as it is what the ORS formula was designed for.

I strongly suspect low BV in my case as I urinate 6+ litres per day, produce no aldosterone, have cold peripheries even in summer and very difficult IV access. Before POTS I used to have plump juicy veins and no bother getting blood out. I had a nuclear medicine BV test but it failed due to technical problems so I have never had mine properly measured.

The ORS sachets are pricey but I have actually ordered all the separate ingredients as powders and plan to try mixing my own, just waiting for a measuring scale to arrive. 

When I saw Professor Newton who diagnosed me, her general recommendation for POTS patients was 1 teaspoon of salt per day. I don't add salt to food as I don't like it.

I have read differing studies and opinions on extra salt in orthostatic disorders - some indicate it is helpful, others suggest any effect is only transient as the body adapts and just pees out any extra, particularly if you don't/can't take florinef. Just from my personal experience with salt I am inclined to believe the latter. 

B x

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@StayAtHomeMom: Yes! My salt was always on the low end of normal when measured and I was worried that it would spike too high once the EP put me on the high salt diet, but it has stayed in range, sometimes higher and sometimes lower in the range. He did tell me that I needed to eat a high potassium diet along with it as I think it helps to maintain the appropriate balance. 

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@bombsh3ll: I've tried the salt in the water trick before and I just couldn't stomach it. Much easy for me to add pink salt to my food versus try to chug down saltwater. Gives me the heebie jeebies just thinking about it 🤢

That's exactly how I feel. Like I lose the water each night and then the whole thing has to start over again each morning. I've noticed that throughout the day I get more and more bloated (i.e. pants tighter), but after peeing overnight a bunch of times, the bloating disappears by morning. 

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