Sodium / salt loading for OI / NMH / energy / fatigue

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, May 1, 2008.

  1. xchocoholic

    xchocoholic New Member

    Hi Everyone,

    I learned about sodium deficiency yesterday and how it relates to CFS and orthostatic intolerance. I've been laying down several times a day forever due to this not knowing it was from OI/NMH (possible sodium deficiency).

    I was surprised when I read that the recommened daily amount is between 2400 and 3000 mg. Since, I make all my own food, I know I wasn't getting this. Somedays I was lucky to get 500 mg a day ...

    I can't remember exactly what my BP was, but roughly 78/58 when I first got it taken at my docs. Then after laying down for an hour (slow doc, but a good one ) it was up to 125/90. Then my doc checked it after I stood there for 2 minutes and it dropped to like 95/75. Which he said indicates OI.

    I thought I had my orthostatic intolerance problem solved when I got rid of my ataxia. But obviously that feeling like the floor was moving in little waves under my feet wasn't OI.

    I started salt loading yesterday. My doc told me to eat a bag of potato chips a day and so that's what I was going to do ... DUH !!! How scientific is that ??!!

    Then the people at the HFS told me that I needed to eat 2000 mg of salt 3 times a day for 4 days to resolve this problem. I want to find that link because it sounds like an awful lot of salt.

    And after eating 1000 mg at one shot, I didn't feel so good but I didn't have to lie down anymore. I took too much though because my head felt like it was pounding when I laid down to watch tv and I had trouble falling asleep last nite. I didn't have caffeine, so I'm assuming it was the sodium.

    Sodium deficiency can lead to all kinds of problems ... and our bodies require sodium to function. It works to keep nutrients flowing through our cells.

    BTW, My labs from last week show that my sodium was well within the normal range. I'm assuming that's because our sodium levels change daily.

    Here's a link to an article form 1997 on how salt loading helps CFS patients.

    Hope this helps .. Marcia

    [This Message was Edited on 06/08/2008]
    [This Message was Edited on 06/08/2008]
  2. meditationlotus

    meditationlotus New Member

    I had the Tilt table Test which confirmed that I had Orthostatic Hypotension. I REALLY salt my food, drink lots of fluids (both of these things build blood volume, which helps you to better handle verticle positions), and I wear compression hosiery. But even these things have not totally solved the problem.

    There is a medication call Proamatine (Midodrine is generic) that acts as a vasoconstrictor for lower legs. It really helps me. I have been without health insurance and unable to afford it. HOpefully, this situation will change soon. You may want to try it, if the above suggestions don't help.

    Also, be sure that you get lots of potassium. Sodium and potassium must be in balance with one another. Eat foods high in potassium, and take potassium supplements.

    Good luck
  3. xchocoholic

    xchocoholic New Member

    Thanks for the tip on taking potassium. I have to google potassium foods ...

    When you say it didn't help, did it help to regulate your blood pressure at all ?

    This study indicates an 8 week trial which sounds like a long time to see if this will work. Not that I mind, I'm just surprised it would take that long.

    Did you feel better immediately when you took the salt ?

    When I first tried it I was amazed at the difference it made and now I'm trying to figure out just how much I need and when. My body was craving it this morning and it took me hours to figure this out. Obviously an am dose is needed.

    Did you get the feeling like you had tons of energy from it ?

  4. xchocoholic

    xchocoholic New Member

    I was looking for others who've tried this. I've been fairly busy since last Wednesday and so far, I haven't crashed. I normally can get out once every 4 days. And I have to rest for the 3 days I'm at home.

    I'm a little tired today and my legs are sore from standing up so much, but I'm not feeling weak when I stand up anymore. I'm also moving much faster than I did before. Low BP is the pits ...

    I was wondering how much and which sodium and potassium everyone is using. And if anyone has found a drink with electrolytes in it that might help. Gatorade is out due to corn syrup and dyes.

    I've been using 1/2 Morton Lite salt (contains potassium and iodine) + 1/2 sea salt and drinking coconut water for potassium.

    If this works, I'll be functional ... Unless the increase in activity is too much for my immune system. Hmmm, maybe the salt will keep my lymph nodes from swelling too ...

    Anyone ? ... Marcia

  5. Beadlady

    Beadlady Member

    loading up on salt. I have to be careful not to get too much MSG, and I've read that a lot of Fibro people have reactions to MSG too.
  6. xchocoholic

    xchocoholic New Member

    thanks ... I remembered that a friend of mine was telling me that some sea salts have MSG depending on how they are gathered. She's the one who told me about using Morton Lite salt. Morton lite only has 230 mg of salt per 1/4 tsp though which is why I'm mixing it. I need more sodium than that.

    I'm not up on the differences in salt ...But, I make all my own foods, so I couldn't get MSG from anything else ...

    Have you tried salt loading ?

  7. TeaBisqit

    TeaBisqit Member

    POTS seems to be the same as NMH. It took me a long time, too, to realize that was my main problem. Every time I would go to the doc, they'd take my pressure and be like, it's normal, it's high, whatever. Finally, I got myself a blood pressure cuff and took it at home. And there it was, in the 80's. No wonder I'd feel so sick.

    Things that have helped me are licorice and coconut water. Coconut Milk, too. More salt in the diet. Celtic Grey salt actually works best. Look up The Salt and Grain Society, you can get it from there.

    Ephedra/Psuedofed was helping me till they took it off the market.

    Nothing staves it off forever. Do try to watch the MSG, it is known to lower blood pressure. Watch the things in the food that are known to lower blood pressure. Stay away from Garlic and Nitrates. Both will bring on a bought of low blood pressure. That's what's so hard. Here we are trying to eat saltier foods and most of them contain the very things that are making us worse. And if not that, they contain alot of fat. It's really hard.
  8. marti_zavala

    marti_zavala Member

    I was recently at Georgetown to participate in the study and they had me on saline IV's for 24 hours. Wow, what a difference. I didn't crash even though it was a grueling trip. I think it was the saline iv., I was well hydrated.

    My bp usually is 92/65 but sometimes drops to 88/56.

    I think salt with water helps to hold up blood volume.

    I used to take salt pills but I didn't feel much difference. I will be trying this again.

    Also, MSG is in a lot of spices, natural flavors, artificial flavors. That is how they get it in the food at high levels. They get to put it in as other ingredients if those ingredients are below a certain level. A great book is Excitotoxins, The taste that kills by Dr. Russell Blaylock. These excitotoxins vibrate the neurons till they die an early death.

  9. nitekitty

    nitekitty New Member

    Please be careful.

    Salt loading causes Potassium deficiency. I learned this the hard way.

    I have Vasovagal Syncope so I'm a passer outter. I was told to salt load but my doctors never warned me to make sure my potassium, magnesium, calcium, chloride was okay.

    I find that supplementing amino acids, eating protein and no simple sugar, snacking constantly (no big meals) has made it so that I don't need to salt load so often. Loading up on salt fixes the symptoms sometimes but won't necessarily fix the problem. I've heard a lot of negative responses from fellow syncope patients about salt loading.

    You may find that cutting out simple sugars and snacking throughout the day (every 2 hours at least)-- You will not feel as bad and less often syncope symptoms.

    "Insulin Sensitivity in Young Women with Vasovagal Syncope" by Dr. Golstein is a short good read too.
    It states that reactive hypoglycemia symptoms trigger syncope episodes in women with vasovagal syncope, which is another dysautonomia.

    [This Message was Edited on 05/23/2008]
  10. moreinfoplease

    moreinfoplease New Member

    I have a question about the homebrew recipe. What is No salt? Do you mean a salt substitute? If so, what is the reason to include that?
    I have been adding salt to my diet but do not know if I am adding enough and at what point it would be too much. I looked around the web today and found a lot of different recommendations for salt intake for those with orthostatic issues: 10 grams a day, at least 8 grams a day, 10-15 grams a day, 3-5 grams a day. (sorry didn't keep good notes, so I can't tell you where I read these). Anyway, it would be really useful to know what amounts you have found beneficial.
    I recently had the tilt table test done and was prescribed midodrine, but have not started taking it yet. It is waiting for me at the pharmacy, but I am now wondering if I should try increasing salt first, since I am thinking I may not have increased enough and done so consistantly enough.
  11. xchocoholic

    xchocoholic New Member

    Hi again,

    I'm terrible at remembering who wrote what and it would take me a long long time to cut, paste, etc. so please excuse me if I just respond to everything I read here ...

    I'm feeling completely healthy most of the time (well at rest anyways) now thanks to getting the gluten, etc out of my diet. So now I'm able to listen to my body for symptoms. Before going on this diet, I felt soooo sick all of the time that I couldn't tell what was up.

    I had gluten ataxia (heavy legs, off balance, weak arms, visual problems) so I couldn't stand up without feeling like I was going to fall over. I had myoclonus so I felt jittery and like I was going to have a seizure most of the time.

    BTW these symptoms are considered normal for CFS...: (

    I'm excited about salt loading because this could be it for me ... : )

    I'm new at salt loading still, but so far this only seems to work if I get enough salt. Gatorade never helped me so I figured I was one of those who couldn't be helped by additional salt. Now I realize how goofy that was ...

    For one thing, I was still eating gluten then so I had gluten ataxia, etc. Even then, Gatorade doesn't have enough salt and has high fructose corn syrup and dyes which I'm sensitive to so that wasn't a good solution for me.

    I'm starting my day with 500 - 1000 mg (1/4 - 1/2 tsp) of salt sprinkled on my breakfast + either a healthy serving of cantaloupe or 8 oz of coconut water and 16 - 24 oz of water.

    At this point my goal is 3000 mg a day, but I've seen others say to use 8000 mg a day. I really don't think we should be taxing our bodies with that much. And 3000 mg a day is considered normal. I'm already detoxing (excessive sweating) with this amount so I'm just going to keep it here for now.

    Coconut water has 530 mg of potassium + other electrolytes in 8 oz. It's actually used by the medical communities in some areas to rehydrate people when there is nothing else available. I bought plain Vita coco this time because it was the only one without other stuff in it ...

    About eating every 2 - 3 hours .... That could be hypoglycemia OR orthostatic intolerance. I have / had both ...

    I started looking at this last year, but it took me awhile to figure this out. (And again I could never have figured this out with gluten in my diet.) I felt better sometimes when I ate but not always. I never ever thought to look at how much sodium was in my meals so I never realized that my food was raising my BP sometimes and not others.

    I also figured out that if I laid down for 20 minutes to an hour, I felt completely healthy again. This was my BP coming back to normal, but up until May 1st, I thought it was my BG level. Or a mitochondria problem. Or a glycogenesis problem ...

    This is why our doctors can't help us with this. Not even the researchers. They aren't feeling their BG levels take a dive or their BPs drop so they have no idea what we are feeling. They also aren't experimenting with this to see what works. I had to use a blood glucose monitor to understand how to regulate my Blood Glucose levels. And now I'm using a BP monitor to learn how my BP is working.

    I found out that I had chronic hypoglycemia March, 2008 when I finally got a blood glucose monitor. I was diagnosed with hypoglycemia via GTT in 2006 and was told to eat every 2 -3 hours, but it never worked for me. My doctors acted like I was nuts when I told them this wasn't working for me. When I read Dr. Myhill's study on chronic hypoglycemia, it dawned on me that that was what i was dealing with.

    I'd suspected chronic hypoglycemia after reading Dr. Myhill's report, so I've been on the Paleo diet since November.

    As of my last GTT in April, I'm no longer hypoglycemic and can go several hours without eating. I'm still on the Paleo diet and eating every 2 - 3 hours and watching to make sure my glucose stays up. Even though the test said I was normal now, I want to be sure I don't get hypoglycemic again.

    BTW, Dr. Myhill wrote an article on CFS and chronic hypoglycemia. It's in the library here. She explains how our livers have to be retrained ...

    Gotta run ... DD is here ... Marcia

    PS .. I HAVEN'T HAD PEM (post excertional malaise) SINCE STARTING THIS LAST WEDNESDAY ... And if I start to feel weak when active, if I drink the salt water, I'm fine again. WOO HOO ... Hope this lasts ...

    Normally, I'd be wiped out after one day and have to rest for 3 ... I'm hoping this will continue to work but I'll let you know. I'm headed to the beach today with my DD ... Yeah !!!!

    [This Message was Edited on 05/07/2008]
    [This Message was Edited on 05/07/2008]
    [This Message was Edited on 05/10/2008]
  12. moreinfoplease

    moreinfoplease New Member

    for the info. I think I will try the homebrew. Have you discovered a good way of flavoring it? I know it says stevia or lime, just wondered what may have worked for you or for others. Drinking water with salt doesn't sound very good, but I am sure I can figure out a way to make it taste ok.
    You said this was from Dr. Cheney. I've been trying to learn more about his theories, but have had difficulty. It seems that most accounts are lengthy and detailed and complex, and with my fatigue and brain fog it has been difficult for me to digest these articles. Anyone have any to recommend? Also would like more recent ones, as I have seen mentioned that Cheney has changed his mind on previous theories.
    (side note, just as chronic fatigue minimizes what is wrong so does brain fog! It is one my biggest and scariest problems.)
  13. xchocoholic

    xchocoholic New Member

    At this point, I'm carrying around a 16 oz bottle of salt water and drinking it during the day when I feel tired. It tasted gross at first, but now actually I like it. I wouldn't add stevia to anything.

    It's 1/2 tsp sea salt and 1/2 tsp Morton's Lite.

    It usually just takes 1/4 - 1/3 of the bottle for my energy level / BP to go back up.

    I found out the hard way never to salt load in the evening. I cut it off by 6 - 7 pm. It gives me too much energy at nite ...

    Other than that, I'm adding salt to my food and eating cantaloupe and drinking coconut water. There appears to be a lot of potassium in our foods. Chicken, fish, yogurt, etc.

    Sorry I can't be more help. Marcia

    [This Message was Edited on 05/10/2008]
  14. xchocoholic

    xchocoholic New Member

    I'm not keen on any doctors right now. (18 years of being disabled and apparently misdiagnosed will do that to you.)

    Cheney tells us to use Klonopin to protect our brains, but IMHO if he told us to reduce excitoxins we wouldn't need to protect our brains.

    I was on Klonopin for myoclonus, but after removing gluten from my diet, I don't need it anymore. My myoclonus (seizures) are from gluten, but dairy is known to do this as well. So are MSG, aspartame, dyes, etc ...

    I think the medical community has missed the boat when it comes to looking at how foods and nutrients affect us. Sure many of them are saying to eliminate food intolerances, but from what I've read, only Dr. Myhill told us how to resolve blood glucose levels (chronic hypoglycemia) via the Paleo diet.

    There is other info on the web concerning using the Paleo diet to control BG levels though. Anyone remember the study done where they put those people in the zoo and fed them ape food ? That was the Paleo diet study and their BG levels normalized after that.

    The studies I've seen on low blood pressure due to sodium deficiency were incomplete.

    Dr. Bell did a study on saline IVs, but the IVs themselves proved to be too much for many of his patients. I've yet to hear of anyone who could handle IVs over an extented period of time. And he made no mention in his study of the fact that we need 2400 - 3000 mg a day of sodium daily, potassium or water. Google Bell sodium.

    In the other study done on CFS and sodium deficiency, the patients were only given 1200 mg of sodium daily. Depending on their diet, that may not have been enough. And there was no mention of potassium. Or how much water. Water is key to this working ... I'm at 10 - 12 glasses a day now.

    Both of these studies were deemed partial failures because other critical factors weren't taken into consideration.

    From what I've read, the researchers concentrate on all of the bio chemical aspects caused by chemicals, food intolerances and nutritional deficiencies, but never tell you that diet is the root cause. Sure, the medical community likes this kind of tech talk, but it's clearly over our heads.

    I've wasted entirely too much time trying to understand the bio chemical processes of the HPA axis, glycogenesis, mitochondria, etc. All words I didn't know until two years ago. I think our best bet is to stick with info on the web about nutrition.

    JMHO ... Marcia

    BTW, Did I tell you that my GPs solution for my low BP was to eat a bag of potato chips a day ???? Does this tell you how little they know ?? He's actualy a very good, likeable doctor, but appears clueless on nutrients.

    [This Message was Edited on 05/08/2008]
    [This Message was Edited on 05/08/2008]
    [This Message was Edited on 05/10/2008]
  15. xchocoholic

    xchocoholic New Member

    Here's the info on Thermotabs.

    Here's the info on No salt. It's just potassium no sodium.

    Here's the info on sea salt.

    I don't know this guy from Adam, but I found this article about sodium and CFS interesting.

    I still haven't figured out exactly which source of sodium is best for us. I've done a lot of research, but they all seem to have pros and cons.

    I'm still using a combo of sea salt and Morton Lite. I don't do well with supplements and so far what I'm doing is working.

    I've been needing afternoon naps the last 3 days because I've felt sleepy, but other than that I'm staying busy and still responding to an increase in sodium if I feel fatigued. It takes 1/4 to 1/2 tsp of salt in water to perk me back up. I do better with salt in water than just eating a tsp. It just disperses better ...

    I'm still supplementing my potassium with 8 - 16 oz of coconut water a day too. 8 in the am and 8 in the afternoon.

    Interesting change ... Last nite after taking an epsom salt bath, I actually sweated so much it was dripping off of me. That was new ... I've been sweating normally since 2007, but never this much ...

    I'll keep this updated so you can follow this ... Marcia

    Wish me luck ... : )

    PS. Sorry if I go off on the medical profession from time to time. The last couple of years has been quite an adjustment for me. I still like my docs, I just realize their limitations ...

    [This Message was Edited on 05/10/2008]
  16. woofmom

    woofmom New Member

    You may want to read up on hyperkalemia which can be a result of metabolic acidosis.
  17. xchocoholic

    xchocoholic New Member

    Thanks. I googled this ...

    I'm trying to keep my sodium and potassium at a 2:3 ratio to avoid this. I eat a lot of foods that contain potassium and since I've responded so well to a sodium increase, I think I'm ok with potassium.

    I'll have to take another look at No salt since it's high in potassium ... I really like the coconut water and it has other nutrients besides potassium. It's pretty expensive though.

    Researching all of this is so time consuming.

    I've been following your threads and I'm happy to hear you're doing well ...


    [This Message was Edited on 05/10/2008]
  18. desertlass

    desertlass New Member

    Thanks for all your research and links on this topic.

    Getting the salt water down has been a problem for me-- it's supposed to be part of my adrenal restoration program.

    However, I am glad to hear that one can adjust to it over time. There are many things that I can tolerate now that I never would have thought.

    I think Mark London is a fairly active member of this board and goes by the username mrlondon, if you wanted to do a search on his name or profile.

    I have been looking into this sodium/salt issue lately, because my husband's aunt has FM and was in the hospital, and they discovered that her sodium levels were really low.

    I'm trying to find out what they told her to do about it, and if nothing, I will be able to send them some info to look into.

    Thanks so much!
  19. xchocoholic

    xchocoholic New Member

    This article leads me to believe that nothing can be done about this ... Has anyone been cured of this ?

    This article states that NMH causes PEM ... I only copied in the sections that I thought were interesting at this point, but this whole article is excellent.

    "Some patients with NMH experience prolonged fatigue after a modest amount of physical activity, or after sustaining quiet activity like sitting at a desk. This fatigue after exertion or sustained activity can also last 24-72 hours, and can interfere with many daily activities. "

    "One of the most common and treatable problems identified in those with NMH and POTS is a low salt (sodium) intake in the diet. Salt helps us retain fluid in the blood vessels, and helps maintain a healthy blood pressure."

    "For individuals with NMH, a low salt intake may be unhealthy, and reducing sodium intake may move them from feeling good to developing the symptoms of fatigue and lightheadedness described earlier. In experimental work earlier this century, severe short-term salt depletion led to fatigue and mental dulling in the adult research participants."

    "How are NMH and POTS treated?"

    "High carbohydrate meals have been shown to reduce blood vessel constriction in response to upright stress, so a lower carbohydrate intake and frequent small meals may help. "

    "Several research studies have shown that if blood vessels can be compressed from the outside (using tight compression garments or military anti-shock trousers), the abnormal heart rate and BP changes of NMH or POTS can be reduced or eliminated."

    "Waist-high support hose can prevent some of the excessive pooling of blood in the legs (knee-high support socks help somewhat), as can garments that increase abdominal compression (these work by preventing excessive amounts of blood pooling in the intestinal circulation), such as abdominal binders and abdominal corsets. "

    "Allergies or delayed hypersensitivities to food proteins (most commonly cow's milk protein) can co-exist with orthostatic intolerance, and unless they are addressed they can obscure any improvements that might otherwise come with medications and postural changes. "

    "If hypersensitivity to a food protein is playing a role, substantial improvements can result from strict exclusion of offending foods. "

    "NMH and POTS are most often treated with a combination of increased salt and water intake. The increased salt and water help ensure that the blood vessels are filled better, and that the heart receives an adequate amount of blood even during upright posture."

    "We recommend at least 2 liters of fluid per day. Our patients who drink fluids regularly throughout the day seem to do better than those who don't take this task seriously."

    "Keep in mind that prolonged periods of sleeping (more than 12 hours) may interfere with the ability to keep up with fluid needs. We recommend drinking fluids every 2 hours throughout the day. As a result, it is important to have easy access to fluids at work or at school."

    "Exercise is important in regaining the effects that fitness brings in counteracting NMH or POTS. Because exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found, it must be done carefully at first. "

    "When you and your doctor feel you are ready, begin a regular regimen of exercise, finding something that does not make you lightheaded and doing it for brief periods at first, increasing gradually."

    "A group of our physical therapist colleagues in Baltimore, led by Rick Violand, PT, have helped us to identify a relatively high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in many of our patients with orthostatic intolerance. "

    "These postural restrictions have helped explain why some patients were finding that exercise led to substantially worse symptoms. Among those who have the worst of these postural restrictions, several weeks of gentle manual physical therapy often prepares them to tolerate the mild aerobic exercise that would have caused a flare-up beforehand."

    "We think careful attention must be paid to postural asymmetries and restrictions in mobility during the physical examination, and the diagnostic expertise of a physical therapist may be essential to identifying problems. Manual techniques that our colleagues employ include gentle neural mobilization (or neural tension work), myofascial release, and cranio-sacral therapy."

    I'm tired, so I'll have to come back and edit this later ... Marcia

    [This Message was Edited on 05/11/2008]
    [This Message was Edited on 05/11/2008]
  20. marti_zavala

    marti_zavala Member

    "Between doing that and doing saline IVs I overloaded my heart and just about put myself in the ground. Anyone should be careful of the saline IVs especially if you've had heart problems with ME/CFS."

    Can you tell me what to look for - I had saline IV's recently and my OI was greatly improved. I had a couple days of high blood pressure and high pulse rate though.

    Was it related?