The Salt Poll

Potassium and ADH

I just want to point out that potassium lowers blood pressure, not raises it. It does such a good job of lowering it, that it is legally restricted to 99 mgs. per dose. Too much can also cause serious heart rhythm disturbances.

I have serious high blood pressure and was able to stay off meds until after menopause by using very large amts. of magnesium, plenty of calcium, and a moderate amt. of potassium. After the big "M" I got talked into taking HRT for awhile, and my pressure went so high I had to treat it with drugs.

People sometimes assume cortisol must be high if a PWC has high blood pressure. My cortisol is normal all day and follows the normal pattern, except for the early morning level, which is slightly low.

I have some really severe adrenal fatigue symptoms, but I do not feel like I will pass out unless I stand for a long time, because my blood pressure is going from much too high when lying down to just a little high when standing. That is despite taking a really strong drug to lower it. It is not uncommon for my systolic pressure (the top number) to drop 50 pts. when I stand!

There is a drug used for the low ADH (anti-diuretic hormone) that sometimes causes the frequent peeing problem. It is called desmopressen (sp.?). It is usually much too strong for PWC, even at the lowest dose. I know two people who have tried it and one of them did not pee for 24 hrs. The other did not pee for over 48 hrs. and began vomiting water, which could have been fatal. Dr. Teitlebaum advises that we should just keep on "drinking like fish and peeing like racehorses" rather than take the drug.

I do not crave salt and never add it to anything, but I have been known to be a bad girl and eat Lean Cuisine entres, which have a lot of salt in them, for lunch with a plain salad on the side. I do crave sugar though, esp. chocolate, despite the fact that I can now pass the yeast test with flying colors after plenty of treatment. I think my sugar craving has to do with low serotonin since I also have FMS.




klutzo

Some studies do suggest aldosterone problems in ME/CFS I believe. I do have low cortisol but cortisol tablets make my heart race.

they do make salt tablets (pills)....maybe those would help you

if you do want to try them, though, you may actually have to have a pharmacy special order them for you; bc most people think salt is bad and low sodium is such a craze, they are hard to find.....even if you have to have them ordered, they are really cheap

salt into empty gel caps

From sarahg:

You could try putting salt into empty gel caps that you buy at health food stores. I don't like salt in my mouth, either.

I have POTS (and severely hypovolemic) so I'm supposed to take in 7-8gm sodium per day to increase blood volume. I don't normally consume that much, but I take in at least 4gm daily. I crave it, I love it. I've been known to pour a teaspoon or 2 in my drinks, but I had to stop doing that because it irritates my stomach lining!

I've always liked salt, but when I first got ill especially, and on occasion, I would get fierce cravings for salt, whether potato chips, olives, etc. Separately, also could not drink enough water.

I am not as extreme on salt and water now, but I do notice times when I seem to need more of them. And I've also noticed that sometimes when I start to feel lightheaded earlier in the day than normal, I realize I didn't have anything salty for breakfast, and I make a point of getting some salt.

My husband was told to take some salt tablets before sports, and we got some at the drugstore, but they made him gag. We got two bottles because they had to be ordered - and they're still almost full. I noticed ProHealth had some type of salty supplement, I forget the specifics, and I ordered a bottle, but my husband still hasn't tried those - I think the memory of the salt tablets was too much for him.

I keep a small take-out packet of salt in my tote, along with the aspirin, allergy tab, etc., in case I get caught somewhere and feel a need for salt.

I always like salt on everything and when I was a kid would get nauseated from being outside in the heat. Salt and water took care of that in minutes. But with CFIDS I crave salt and eat huge amounts of it. My doctor told me to eat salt and drink tons of fluids to keep my BP up since the BP meds only worked for a short time, if at all. So, I salt everything and my BP is still low normal and I smoke like a chimney. For whatever reasons, I think CFIDS people must have salt - maybe because of 30% blood volumne decrease that salt and fluids bumps back up a bit, or for other medical reasons. But I crave and need salt - and a lot of it everyday.

I participated in the early trials. The effects were in stages:

1. Nothing for about a month
2. Out of my wheelchair and bouncing with energy.
3. Dramatic weight loss until I looked like a stick insect, combined with a personality change and increasing fatigue. The trial doctor said it was my fault for trying to do too much and increased my dose.
4. Continued weight loss, mind problems that left me like a babbling idiot, no sleep for five full nights and small convulsions.

My own doctor had not seen me all the time I was on the trial. When he did see me, he went white. He was worried that fluid had built up in my brain. He told me to stop the florinef immediately. He said "Most of us didn't think this would help." It increases sodium retention, but the side-effects can be a nightmare, as they were for me... and at first, I had been one of the trial doctor's poster-patients!

I have moderate to severe POTS and constantly crave salt.

I've been taking Florinef (Fludrocortison) 3 times daily with moderate success in reducing POTS symptoms (low blood pressure, dizziness, etc.) for about 2+ years now. It hasn't helped (nor worsened) my fatigue but at least I don't get dizzy and light headed every time I stand. Haven't had any negative side effects either.

Dear Martlet,

That is wild! How do you interpret your body's responses to the Florinef? What are you doing now to help yourself in these ways?

Sing

Not at all wild, Sing. Look at this list of side-effects. Skip the brief list and scroll down to the specifics.

http://www.drugs.com/sfx/florinef-side-effects.html

As I say, I was a poster-patient, even being interviewed on local television. I think that's why the doctor didn't allow for all my objections as I began to get sicker. First, CFS came back, then other symptoms began to add themselves out of that long list, but far worse than anything were the personality changes. Of course, I couldn't see it until after I came off the drug but I can honestly say, hand on heart, that I would rather be sick for the rest of my life than to go through that again. It was the worst period of my whole life and I shake when I think of it. And of course the internet was fairly new and I had no computer to alert me to the potential risks.

My own doctor took me off it immediately, so sick did it make me. He was disgusted and I know that it is much derided in this forum, but he said "We all thought you'd achieve as much benefit with a pickle a day." Of course, he didn't literally mean to eat a pickle every day, but to up my sodium intake, which is what I try to do.

I know florinef can do some good, but I am almost evangelical in my determination to warn people of the risks, after my experience and since then, I refuse all trials and won't take anything without a long track-record.

I'm sorry you had such a bad experience but I have wonder how common the reactions you had are. As I posted earlier, I've been taking Florinef for 2+ years with benefit and no negative side effects. Dr.Bell put me on them and I know that he has prescribed them for many of his patients (presumably with good results overall.)

All drugs can have negative side effects and also, of course, vary from person to person. Common or not, it's always good to be informed of potential risks I suppose.

Dipic - I'm glad it has helped you as it has helped many - 50%, I read somewhere - but the list of side effects, however rare, is horrendous and I do think people should be aware before they start.

Certainly.While I haven't been experiencing any in the time I've been taking it, it's always possible that it could cause problems in the long term. Truthfully, I would rather not be on the stuff but as it's the only the that has helped any of my symptoms at all, I have no choice but to reluctantly continue with it.

Dipic - None of these things necessarily will happen to you. If my experience was that common, I doubt Dr. Bell et al would be prescribing it. Since you are experiencing continued benefits after such a long time, I wouldn't worry about it if I were you.

I ticked 'I crave salt' as this was a peculiar feature of my CFS when I got unwell in June '08. Previous to that, I didn't use much salt when cooking so the cravings hit me out of the blue. I figured if I was craving it, I probably needed it. I no longer get salt cravings but I add a sprinkle of salt to everything, either sea salt or Solo for the additional minerals. I'm also using Myhill's mineral mix. My BP is still too low though.

I always had low blood pressure, even before ME/CFS hit. So I feel I need salt more than ever, now.

Thanks for this topic, Cort, confirming the helpfulness of salt for ---- it appears ---- most of us!

I made some videos with self help for POTS/NMH and the whole low blood pressure problem. You can see them at my channel on youtube
http://www.youtube.com/user/Carrigon
I talk alot about the salt and some triggers for why we get light headed and weak.

i go with the salt craving

Big salt craving here too