Nutrition/diet- Where To Start? Too Much Salt?

[ajw4790]

Hi all!

I am struggling to put together all the dietary things- what to do, what not to do, how much etc. There is the dietary restrictions of dysutonomia, and then any other deficiencies and regulating of vitamins and minerals. So, I just wanted to put it all together in one place, and get input on experiences and thoughts of others. I know we are all told different things and come from different knowledge bases and backgrounds. I don't know if I am the only one confused by all of this or if there are others... So, maybe this can help others as well.

I don't know where to start... I guess with what the drs. have mentioned. (My particular diagnoses are listed in sig. line below, and I take Primidone, Zoloft, Atenolol, Neurontin, Prilosec, daily multivitamin, annd motrin as needed).

So... Drink plenty of water- but not too much (I may have a problem with this- one thing I need to work on- but I am always thirsty!)

Decrease or stop using Caffeine (I did for a while- now I am being bad again! Do others agree this is a must do? )

Decrease carb intake (esp. sugars and simple carbs) - I am just okay at, but really am not good at meal planning around this one

Increase protein intake- I have tried hard with this- I eat more meat, protein bars/drinks, nuts, and dairy

Salt load- I was just told to do it, but not how much

(Cardio pretty much said don't eat fruits or veggies? )

So, I have been working at these, but as I learn more I have more questions and concerns!

Most recently I am concerned about the affect of too much salt in ones diet. Too much salt in a diet can cause of course high BP (not worried about), electroltye inbalance, decreased bone density, gastro. issues (ulcers), kidney stones, and dehydration. (It seems like I had seen at least one other, but I can not remember it...). What is too much? Are drs. concerned of these issues?

I was never told to supplement with other electrolytes to ensure a balance, so are we supposed to supplement? How much of each? Or does supplementation of other electrolytes just recreate the already existing "problem"?

I hope this makes sense and I am not being abnoxious, I am just concerned and lost, and know that there are a lot of very knowledgeble people out there, that can hopefully give me some perspective.

I know a dietician seems like a good idea- right? Tried it... they were only familiar with low salt diets and decreasing carbs and protein.

Would be great if I could find one familar with everything!

Thanks for putting up with me and would be very greatful for any input and insight!!!

[pastordari]

Hi!

I've been told pretty much the things you listed.

My understanding of the salt loading is not to worry about the side effects of too much salt because we have too little and it is unlikely we will reach to "too much" level.

I too stay away from carbs (except this time of year!) and it does seem to make a difference. When I cheat I feel more fatigued and just kind of yucky all over. Perhaps it is the guilt, but I think there is a physical relationship to sugar and symptoms.

I do eat veggies, esp. green ones. I do not as a rule eat the yellows or potatoes as they are a more simple carb and quickly become sugar in our systems.

I try to refrain from drinking caffeine - but like you I am not doing so well with this. If my symptoms are relatively under control then it doesn't seem to bother my system. If I am having issues with tachy then I stay away completely because the caffeine does make it worse, for me that is.

My diet is salads, cheeses, nuts, protein bars (watch for the carbs in these) and meat for the most part.

My physician told me to drink half of my fluids for the day in Propel so I wouldn't pee away my electrolytes. At one point my pcp told me I was drinking too much water based on blood work; but he dooesn't really get the POTS diagnosis and isn't intersted in learning. So, I take his suggestions with POTS related things with a grain of salt and consult my specialist when needed.

I can't tell you precise amounts of these things to eat or not eat, but this is my routine.

Oh, as for fruit my understanding is that dark fruits like strawberries, blue berries, raspberries . . .are better than the lighter ones like citrus and bananas.

None of this is coming from a professional nutritionist. Some information from my ANS doc and some from my mother!

Hope it helps a bit!

Good luck.

[Mrs. Burschman]

I just try to eat a healthy diet. As for caffeine, it seems to help me feel better, not worse. I think that's an individual issue.

I think the best thing you can do is experiment. Eat a healthful diet and see what particular things make you feel better or worse.

Good luck!

Amy

[yogini]

You ask some good questions, but don't beat yourself up too much about the diet. Generally the "recommended" dietary changes make you somewhat better, but certainly don't cure POTS. It's OK to cheat sometimes - we are only human.

There are many people here who are able to tolerate caffeine and drink coffee/soda every day. It actually helps some people since it brings up the BP. I think it's harder to tolerate for people with POTS (as opposed to NCS) since our HR is already too fast. You just have to experiment and see whether it makes your symptoms worse. I can tolerate it, but I tend to avoid it b/c it makes me feel wired and tachy.

The problems you mentioned with salt are ones which regular folks (with normal blood volume and BP) have. The majority of people here probably have a high salt intake - many people have been doing it for years - and don't seem to have any of the problems you mention. It's good to have regular check ups with your dr and get your blood drawn to make sure your blood counts are OK. You can take a multivitamin, but you probably don't need to supplement otherwise unless your dr recommends.

[ajw4790]

I thought the salt was to increase blood volume etc. and not necessarily because we don't have enough.

So, I guess it really seems like we could easily ingest more than what our body utilizes or excretes, and that in turn would affect the things listed before. I don't know...

I just know that sodium can cause decreased bone density due to blocking calcium etc. Also, caffeine decreases bone density. Not to mention I probably don't consume the best amount of calcium, due to being somewhat lactose intolerant. So, I just don't want to mess myself up more.

So, are we really using all that we consume?

Do we need to balance with other electrolytes?

Has anyone successfully seen a nutritionist etc. that has explained all of this to them?

I am just trying to figure this out along with any deficiencies (B12 etc) and effects of the meds (what they deplete from the system).

There is too much!

Thanks!

[yogini]

As far as I know, POTS patients are not deficient in salt. I just think that salt doesn't really seem to wreak havoc on our bodies in the way that we might expect based upon the warnings. The general population is constantly being warned about the bad effects of salt b/c they have a tendency toward high BP, but we need the salt. And if your kidneys are working properly, your body actually gets rid of the salt that you don't need.

There probably aren't too many nutritionists that know much about POTS. Every doc I've seen has said to load up on salt, and no one said anything about balancing out with other electrolytes. . Some electrolytes (such as potassium) can actually be dangerous to supplement. The best way to know whether you need supplements is to actually take the high salt and then have your blood drawn regularly to see if things are off balance. But if your electrolytes are off balance you would probably know it pretty quickly It doesn't seem like many of us need to take any supplements due to the salt loading. I do like to take a multivite which has calcium and magnesium and a trace of potassium - I would probably do this even if I didn't have POTS.

[flop]

I don't think that there is an ideal diet for POTS people to follow. Often it is a case of seeing what makes you feel better and anything that makes you feel bad.

I certainly wouldn't avoid fruit and vegetables as they are such an important source of vitamins and minerals and your body absorbs vitamins and minerals much better from natural foods than it does from vitamin pills.

Caffine is a very individual thing - I was advised to cut it out and spent 6 months being very strick about no coffee, tea, cola, chocolate then realised that it hadn't made the slightest difference to my symptoms. I wouldn't go crazy drinking loads of coffee but one or two cups a day don't seem to do me any harm so long as I have food with it.

I have seen reports that avoiding dairy helps some people but I haven't tried it myself - too much trouble and I can't stand the taste of soya milk anymore.

The only supplement that I take is a calcium + vitamin D3 tablet that I am prescribed to reduce the risk of osteoporosis - I took large doses of prednisolone for 2 years and probably did a fair amount of damage to my bones during that time.

Taking too much salt will just make you pee out the extra salt. If you really go overboard you would be really thirsty and it would probably make you vomit. We need extra salt so that our bodies can hold on to the extra water that we drink. The kidneys pull sodium out of the urine that the kidneys make and because of osmosis water goes from the urine back into the blood vessels - so it helps to increase blood volume and keep our blood pressure a bit higher.

If you search for 24 hour urine sodium on the forum you should find some stuff I posted a while back about measuring urine sodium.

Water - I have been advised that 2.5 litres is about the right amount to drink every day. If you are drinking more than 3 litres you are probably overdoing things and flushing salt etc out of your body in the urine.

Basically everything in moderation!

Flop

[runningshoe]

Hi

Great question and important topic! Don't be afraid to ask. I have had this for a year and I am still full of questions. I have high bp and a history of kidney stones so the salt really does freak me out. I love to cook but I neet to supplement with broth and or a frozen meal (lean cuisine spa meals are low calorie, no preservatives, but high salt). I never used to buy canned soup but have found some yummy organic ones that don't have msg. I asked my cardio if I could meet with a nutritionist. She said I was the first person she had to advise on how to increase sodium intake. She basically told me to do the opposite of what she tells most patients and eat all the foods on the bad side of the food list! Cottage cheese, miso soup, etc are some healthy salty things you can add in. I don't shoot for the upper end of the recommendation given by my dr. He said 4-10 grams of salt a day. At 10 grams I was a puffy person and I think it was hard on my bladder (I have interstitial cystitis). I drink water and no caffeine. I take magnesium and try to eat a lot of veggies. I have been dealing with some tummy issues lately (potsy bloating) and am decreasing my fiber and my sugar intake. I hope this will help my belly calm down. I have not had levels checked but think that is a great idea and will run it by dr at next visit. Do your best, experiement, don't worry about it too much....Hang in there!

[ajw4790]

Hi!

Yeah, me again!

So, found the other things that a high salt diet has been linked to, gastric cancer and exercise induced asthma.

So, anyways with everything we learn at school and then looking up some things, it has led me to these questions. Thank you guys so much for giving me information and wonderful input!

If we don't retain all of that salt and it just leaves then, no biggie! I am just mildly concerned if that doesn't happen! I just don't need to make things worse!

I guess part of my electrolytes in balance question stems from a lot of muscle cramping etc. when I injest a lot of salt. So, I figured my body is telling me something, so I just wish I knew the appropriate way to respond. Happened again tonight...

I know a lot of people consume electrolyte powders or drinks on the board. I do this to a degree and am not sure of the right balance.

I don't want to over do it, because potassium can lower your BP (and don't want that!).

There needs to be a manual to this thing!!!

[ajw4790]

Yeah, yeah, I got another question! (Ya'll must hate me! )

I saw somewhere (not sure where) that for salt loading you are supposed to load with not table salt, but like sea salt or something???

Anyone know anything about that?

P.S. I also found last night after consuming a lot of salt that I had more heart palpitations etc. Does anyone else have that happen? I guess I need to get my electrolytes tested? I am not sure if they have been or not. I will add that to my long to do list.

P.S.S. I am going on winter break from school, so I am "focusing" on trying a variety of things over break. Next quarter I have to go on clinicals and work with patients in an acute hospital setting (likely warm etc), so I am trying to get in the best shape I can. I don't think the patients want me trying to pick them up and transfer them and I pass out! So, I am going over everything with a fine tooth comb etc. and trying what I can.

Thanks for ya'lls help!

[deucykub]

Lina, my doctor also recommends 4-10 grams of salt a day. Do you see Dr. Freeman at BIDMC?

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I probably consume about 4-5 grams a day. My stomach wouldn't tolerate the salt tablets, and if I try to eat that much salt in foods, well, I'm not sure I'd be able to fit through the door in a few months!

I don't take any supplements, and the only restrictions on food are related to those that specifically have a history of triggering my gastro-intestinal episodes. Those for me are Wendy's fried foods, oranges, triscuits, club crackers, watermelon, chips, cookies, grocery store bakery cake... just a very odd variety of things. Some of them are quite delicious though, so cheating is not an unlikely occurrence!

My doctor recommends 2 liters of fluids each day. I've become accustomed to 2 liters of Crystal Light (with only 10% of the calories in Gatorade/water is nauseating) mixed with 1 tsp of salt. This guarantees 2 grams of sodim in that alone, which is more than double the amount in 2 liters of Gatorade, and Crystal Light (or the store generic) is much less expensive, too. It actually doesn't taste bad.

As for Sea Salt, I think it has less sodium than Iodized Table Salt, but my only evidence for this is the Campbell's soup commercial touting lower sodium because they've switched to Sea Salt (no, Campbell's, no..... we need you! )

I think that many of the problems that medical research is linking to sodium is actually caused by high blood pressure due to excessive sodium intake. Is this correct? This is leading a lot of people (journalists in particular) to continuously report how bad sodium is for the body; however, they don't include the information that sodium is also a vital electrolyte the body needs to stay alive!

My understanding though from my specialist is that those of us with low blood pressure are not at risk from the increased sodium; it's not excessive for us. The best evidence to show that our bodies flush out too much sodium is probably the fact that our doctors prescribe Florinef, which helps the kidneys retain sodium, resulting in an increased blood volume and increases in blood pressure. On Florinef, my BP averages about 110/70; off of Florinef, it is about 90/50 on a good day!

[ajw4790]

Hi! Me again!

Anyways, so I remembered where I had seen that some drs. say that we should use sea salt vs. iodized table salt- it was on the NDRF board. So, I was just curious to ya'lls experience with this. ????

As far as the long term effects of salt... I was also doing a POTS web search the other day in found a little blurb on how the high salt diet does increase our risk of heart problems on the Merck website. I realize it is probably not a huge thing, but with what I learn in classes and everything I guess it makes me uneasy sometime the things I have been told to do to reduce symptoms. I feel I actually eat worse now then before, because of trying to accomplish different things.

Anyone out there with the cardiac or medical background have any knowledge on this topic? (and everyone else )

Thanks!!!

What the website says:

Increasing Na intake may expand intravascular volume and lessen symptoms. In the absence of heart failure or hypertension, Na intake can be increased 5 to 10 g above the usual dietary level by liberally salting food or taking NaCl tablets. This approach risks heart failure, particularly in elderly patients and patients with impaired myocardial function; development of dependent edema without heart failure does not contraindicate continuing this approach.