Am I The Only One Uncomfortable With Salt Loading? Other Options?

[jrlehnardt]

I really am not comfortable with salt loading. i have been doing it for almost a year started with 5 g now doctor wants me to do 10g as a minimum daily. i really dont notice too mmuch of a difference and i am so bloated and have more tummy problems with doing it. plus have put on so much weight from doing it. this cant be good for me. i just wonderis there something else i can do' instead?

[Dizzysillyak]

I stick to the rda on sodium which is 2500 - 3000 mg a day. Any more and I start feeling sick.

I wouldn't take 10 g either because

of what sodium does to our bodies. Do you know if they've looked at long term complications

of salt loading on us ?

Overall tho, I'm not at all impressed with our specialists. It seems all they do is run the same tests,

get the same results and prescribe the same drugs. I woud've thought they'd learned something by now.

Tc .. D

[StephL]

My doc has me on 3 to 4 grams a day. I was a little worried about that but 10? That is crazy. I would be leery too.

[hholmes13]

Yikes 10g! How do you even take in that much? My tummy would never handle that. I usually shoot for 3g or so. Even that starts to upset my stomach some. I could never do salt tablets either as they made the nausea so much worse. I agree that I've never really noticed much of a difference in how I feel either. My bp has gotten pretty stable at this point, and even if I'm not consciously eating tons of salt it still stays pretty good. Hopefully someone here will have some ideas for you.

[issie]

Do a search on salt here on the site. That's one of my BIG questions in the treatment of us with POTS. Lots of info in the past on this question.

Issie

[sue1234]

I only take in a normal amount of salt daily. I tried adding extra, but extra salt makes me bloated and might aggravate my inner ear issue, as I seem to get a little more dizzy.

[jpjd59]

One of my daughter's doctors told her that she should be taking in 10 grams of salt. This was impossible to do without salt tablets and the salt tablets make her stomach upset, which in turn causes her to not be able to drink the appropriate amount of liquid that the doctors want her to drink. The next specialist that my daughter said 10 grams was too much and that 3 to 4 grams would be appropriate.

I sometimes feel like the doctors really don't know much about this illness!!!

[E246]

My UK Doc said that there was no evidence it helps and not to salt load at all. I feel really comfortable with that and am with you in worrying about long term consequences.

There were some posts recently about this -might be helpful.

[Mytwogirlsrox]

I feel better not salt loading, when I was first diagnosed I drank as much gatorade as I could get my hands on.. And ate a ton of salt. I was so thirsty all the time! Now I just drink water and a emergen c & I feel better. I' feel like the Gatorade and salt was dehydrating me.. Funny huh? My lips were always dry, my mouth was dry etc..

[yogini]

Everyone here is so different. You have to tailor your treatment to your symptoms. There are some dysautonomia patients with high BP, so salt clearly isn't good for everyone. There is also a big difference btween sodium (Na) and salt (NaCl). Salt is not pure sodium, and it can get confusing as to whether the mgs are sodium or salt. As with anything else the key is to start slowly and build up. If you are not feeling better, then it may make sense to stop or cut down. If you started with 5mg and that is too much, it may make sense to try 1mg and see how you feel. I do feel better on extra salt, but not everyone does.

[jrlehnardt]

thanks, everyone for your replies and input. i have read some on salt but i just looked back at more , i guess i missed while i was probably on my trip and recovering from the mayo trip. i have a lot of gastro problems so i am not able to do salt tabs either. i found the only way to get the 10g was to eat unhealthy and mostly restaurant foods, and i am not going to do that every meal every single day. i have had major bloating and weight gain since starting a year ago and many more tummy problems, here i was thinking my tummy probnlems are getting worse just with pots and eds and now i bet it all had to do with my salt intake. i am going to go down to 2-3 or even less and see how i feel.

[Steph555]

During my Mayo visit they told me to go home and do 2 grams of sodium a day and then redo my 24 hour urine. We did that and I didn't come close to the goal they set for my sodium output. After that they told me that many patients need 4 grams of sodium and that it is safe to go up to 6 grams of sodium (or 15 grams of salt a day). I just got those instructions last week and haven't figured out a way yet to get that much salt down. And it just doesn't seem right....

[Lemons2lemonade]

florinef is always an option but, i can't say i think its any better for your body than salt loading

[ramakentesh]

My theory is that the POTS body does not conserve salt properly and research is heading in this direction for some patients.

Remember that the most validated finding in POTS is low blood volume. I wont go any further because ive made my view on this clear.

[jrlehnardt]

yes i have tried florinef before as well, but it did not help me at all. yes i definitely feel that my low blood volume has a lot to do with how i feel, and i have felt that way for years about low blood volume. what are the best things out there for it. my doctor mentioned infusion of red blood cells, and meds that help with volume expansio . but he didnt go more into it. do any of you know more about this, what type of meds, or is infusion safe and helpful? i remember months ago reading anout it, but cant find it now.

[yogini]

Florinef would be way worse in terms of side effects than salt loading. It increases salt retention, plus has a whole bunch of other side effects.I think the Effects of salt may be less dangerous for many dysautonomia patients than the average person. too much salt for normal people leads to high BP, which can wreak havoc on the body. Many of us have low BP or low volume and if salt brings us to normal, it shouldn't be so bad. However, if you have too much water weight from it, that is something to talk about with your dr, esp if it isn't really helping with symptoms.

[yogini]

I can't tolerate salt tablets at all. I drink organic broth. One cup has almost as much salt as a tablet and is much easier on the tummy.

[Relax86]

I have low am BP, was 80/45 in up until March, lately has been in the 90's/50's sometimes get into 60's. I have diagnosed low blood volume. Salt does help me...I found that if I over do the water I think it taxes my kidneys and flushes the salt. I put 1/2 tsp of Celtic Sea salt in a baggie and try and get to it by mid am. I sprinkle it on food t/o the day etc.... I used Gatorade in the am and prior to sleep to try and provoke my BP to not drop while I sleep. I recently found ZICO which is coconut water which helps a lot!!! I take the BP once in the am just to guide me as to how much I should push the salt. I'm under the impression that it's like a replacement dose and I'm not really adding it???? Sort of like my body isn't making it or storing it so I'm replacing it??? I could be completely wrong. I feel like my salt/sodium intake is a big guessing game and never have 2 good days with the exact same dosage so I add symptomatically. Also now that I'm using ZICO more than Gatorade (to reduce unnecessary sugar/calories) I'm unsure of how much salt to eat as ZICO has quite a bit.

Also I take 5MG of hydrocortisone 3x/day which seems to be my savior; the only drug I tolerate. I tried to go off of it once and slid very quickly backwards with every symptom.

[arizona girl]

I have hyper pots diagnosed by Dr. Grubb and confirmed by catecholamine test standing/supine, also skin biopsy proved small fiber neuropathy. I believe grubb's literature states he doesn't feel salt loading is helpful with patients who's blood pressure goes up on standing.

That being said I do suck on coarse nuggets of himalyan pink salt. It actually tastes good and has minerals too! I do have low blood sodium at times, but I also have a lot of immune defects causing my dysautonomia symptoms. I haven't noticed any change in my symptoms from using salt though. Other treatment plans addressing the multiple autoimmune issues, are helping, I've seen some improvements.

[jpjd59]

Arizona Girl:

My daughter also has hyper POTS. Just curious as to what treatment plan you are on that is helping with the muliple autoimmune issues.

Pam

[issie]

That being said I do suck on coarse nuggets of himalyan pink salt. It actually tastes good and has minerals too! I do have low blood sodium at times,

In my study of salt - I found out that salt in it's raw and natural form - minimal processed is the best way to use salt. It has all the minerals in it and helps it to go into the cells better. Most things we buy today (pre-packaged foods, resturant foods etc.) use refined salt. It's been stripped of all its minerals and that type of refined salt is what can cause havoc in our bodies. The best salts to use are things like Celtic Sea Salt and Hymalyan Salt.

Personally, I think there is a defect in our system with getting the fluid into the cells properly. Because, at least for me, it doesn't matter how much I drink - I feel like I'm dehydrated and my body will show signs of that - a good bit of the time. (Not right now, having trouble with edema. I think due to a new med - making things worse in that department.) But, it may be a problem with the way our bodies process or use salt and therefore that causes issues with fluid retention and it going into our cells and being utilized properly.

Issie

[yogini]

Interesting, I always shave a craving for carbonated drinks. Never realized it helps hydration!

[arizona girl]

Pam, Hi sorry for not getting back to you. Some days I'm up to posting some not, then I forget.

I also have had low d, b12 and iron. Iron or anemia can cause some pots like symptoms. Has she had a full hematological work including ferritin and tibc? The other thing to consider even if she got pots post virus, is there a possiblity her immune system is working right, which made her not be able to fight off the virus well. I had a very bad case of mono at her age, and didn't know I had it until I had huge white growths growing down my throat. We are so used to not feeling well, we don't always know when we are actually sick with something viral or bacterial. I never run fevers or they are poor in quality even when my colon ruputured and I had a raging infection. If you want to have her tested for immune issues let me know, I'll tell you what my tests were. At her age I didn't appear outwardly ill, though I felt a lot of pain and fatigue and lost weight and didn't sleep well, and I could cry or get upset pretty easily.

Okay, how I'm treating what has finally been diagnosed after many years of being told everything was normal.

Dr. Grubb put me on labetalol for the hyperandregenic. It is an alpha beta, and works better with patients who's blood pressure goes up. I take a very low dose and starting at 50 mg or half of a 100 mg pill. It has a short action time. I tirate that up or down depending on the day and my activities. I never take it in the evening as my HR/BP go down when I lying down and up when I'm upright or talking. It ain't perfect but I tolerate it, many cardio's put patients on to high a dose of beta or when that has long action and stays in the body longer. Those don't work great for most of us. They can also cause weight gain at higher doses.

CVID/hypogamaglobulinemia - Common variable immune defeciency. Means my body doesn't produce enough or effective immunoglobulins, the part of our body that fights off infection, viruses and bacteria. This condition is often found along with other autoimmune disease companions. Which is me. I have undefined connective tissue disease UCTD, hashimoto thyroid, lichen-autoimmunity to my vaginal tissues, though it can be found in other parts of the body, I had a lot of yeast/bv infections. I also have PCOS polycystic ovarian syndome and the resulting metabolic syndrome that is caused by high levels of insulin. My blood glucose though is normal and I am not diabetic yet. What follows is what I take for them, I don't expect to ever be cured at this point, baring a miracle from god, but we are working on managing what I do have. It is too soon to tell how the latest treatments are working as I have only been on them a few months.

CVID - IVIG/Privigen brand infusion 2x a month to replace the immunoglobulins.

Hashimoto - just upped to 50mg of synthroid brand name.

Pcos/insulin resistance - glumetza 500 x2 a day

UCTD - Plaquinel 200 mg x2 a day

lichen - plaquinel and steriod creams, diflucan, clynidimycin cream or metro for the infections

D3 - 5,000 mg once a day. Dr. Grubb said d3 is better the prescription d2

b12 shots once a month

Rocephine shots when I get an infection. Antibiotic.

advil, tylenol or tramadol for pain. A topical pain patch called flector for muscle spasms and skelaxin

I take these as little as possible.

So, that is my plan right now. My infection rate is better, my hr/bp are better. I'm waiting to see what the new meds do, the plaquinel and synthroid, keep your fingers crossed for me, I still have a lot of pain and fatigue.

[ramakentesh]

70% of POTS patients are hypovolumic. Most Hyper patients in particular experience increased urination and thirst particular with tonic upright positions. The interesting thing is that we have low blood volumes but the electrolyte status is intact, meaning we basically have low amounts of all electrolytes where we have low blood volume. Further it appears that in many patients the volume deficits are biochemical, meaning that they cannot be counteracted by salt or volume loading.

This is why many POTS patients feel better on Florinef, or after saline infusions or perhaps after DDVAP. Theoretically ARBs could also increase volume over time.

Most alpha agonists like midodrine promote low blood volume.

[issie]

70% of POTS patients are hypovolumic. Most Hyper patients in particular experience increased urination and thirst particular with tonic upright positions. The interesting thing is that we have low blood volumes but the electrolyte status is intact, meaning we basically have low amounts of all electrolytes where we have low blood volume. Further it appears that in many patients the volume deficits are biochemical, meaning that they cannot be counteracted by salt or volume loading.

This is why many POTS patients feel better on Florinef, or after saline infusions or perhaps after DDVAP.

I've been thinking about this and I'm not figuring something out. You are right about the electrolytes being in balance. The recent test I had showed this with me. But, I'm having edema and that would suggest that I'm not hypovolumic - yet, I have other symptoms of dehydration. I'm not diabetic - that came back high normal. So, that's not the issue. With EDS veins being lax and possibly having issues with leakiness - it could be that with my edema - I'm still low blood volume - but, the veins are not holding the fluid where it needs to be and it is leaking out into the tissues. How would one fix this? I haven't been able to find any studies on it or an explanation for it. Another EDS person and I have been discussing it. But, not being able to figure it out. I do know that my vascular system is very bad - I had varicose veins taken out of my legs when I was only 26 years old. So, there is faulty valve and vascular function.

Issie