Hi I'm The New Girl/need Help Using Salt

[Relax86]

Hello ~ I'm Tracy. Recovering from my second bout of a POTS attack. First one was 2009 and I never was diagnosed - I just got better over time on my own. At that time I started to research POTS but once I recovered I was pretty sure that I didn't have it. Had my next flare up in January - coincidentally the exact week of my attack in 2009 - and this time landed out on disability, was hospitalized, discharged without a diagnosis and sicker than I went in. Once i came out of the hospital I followed up with my family Doc who said I have POTS. I've done terrible on Fludrocortisone, took Hydrocortisone 2x/day which helped a ton (my women's health Doc thought I had adrenal fatigue), a cardiologist prescribed Midrodine which I haven't tried since I do terrible on meds. Right now I feel so lucky to be 80% better. Back to work and functioning but I'm symptomatic every day. Every single day is hard. I'm off all meds and I just salt and drink Smart Water. I only do 64oz a day because it seems like too much water flushes out my electrolytes. I feel lucky that my family Doc has a POTS awareness but I'm somewhat self treating and not sure what to do next. I still have expectations of a recovery.

My main symptoms are low BP while supine - 85/45 usually in the morning. Hard to get moving. I feel like I'm riding on an elevator during parts of the day, and also feel like I'm descending from an airplane with head pressure. I have right ear pain, and a pulsating or spasm in my neck on the right side when I'm real symptomatic. Also I may have blurry vision, be unable to maintain body temp, usually run low, feel cold. If I get hot I don't sweat anymore I just feel sick like I'm in a heat box. Digestion is now much better. But I do get a symptom that I call "nervy" - it's like electricity is going thru my body...sometimes it's just one spot sometimes it's all over, sometimes just right side of my face.

Had an endocrine guy rule out Addisons, but did find low Aldosterone and low renin however he told me I was crazy, skewing my own tests and that I didn't need an Endo. Had negative CT Scan, brain MRI, all negative cardio tests. Had a TTT in which I felt terrible but didn't pass out. I do faint on my very worst days, usually in the middle of the night when trying to pee.

I use sea salt every day, iron for anemia, have low ferritin and no idea how to correct, corrected Vit D deficiency, take EFA's and vit B. Blood work and my period just about kill me. Just started acupuncture and chinese herbs, able to add some light weight training last week.

After being long winded about my story my question is how to take my salt??? Throughout the day, in the morning, at night and how much?? I have no clue and no Dr. I just like it out of a baggie. I measure 1 tsp into a ziploc baggie and lick it t/o the day.

Also, I'm not as symptomatic as some of you so I feel so lucky and I still have hopes of getting better. This forum has taught me so much about getting better. And I'm pretty sure you guys are the experts. Thanks for any suggestions on how you all salt. I appreciate your dialog on what you're all going thru. Regards, Tracy

[AllAboutPeace]

Tracy,

Welcome to the group!

Are you able to work in the mornings?? I know how tough it is for me to get my body going in the morning and my BP's aren't usually as low as that upon waking.

As for salt intake, I just put a generous amount of salt on all of my meals throughout the day. I don't know the exact measurements, so maybe someone else will be able to give you that info. I will also add in extra salt snacks if my blood pressure is dipping. I'm not sure I could ever consume the huge amounts that some docs recommend.

Many of us do replenish electrolytes with electrolyte beverages (gatorade, pedialyte, coconut water, homemade solutions), to make up for the loss through consuming so much water. Getting the right balance of salt and water seems very individual. I know I need at least 2 1/2 litres of water/day. I had to play around with the amounts and kept a journal to find out what worked best. I hope you'll be able to find what works for you.

[MomtoGiuliana]

Welcome Tracy. I'm sorry you had to seek us out--but glad DINET has been helpful for you.

I also supplement with salt, but for me, just adding a bit extra to food, typically. Extra salt definitely helps me to feel better. When I was more symptomatic I was told to take salt pills (don't recall the dosage now). I have also done exactly what you describe. Bring a baggie of salt to work and use it throughout the day. My specialist more recently cautioned me about over-doing salt. He said it could cause me to excrete too much potassium, which is not good. I have a tendency towards slightly low potassium when I have a flare-up. So I have more recently tried to focus more on getting fluids with balanced electrolytes when I feel really poorly. I've been drinking coconut water in more recent flare-ups (up to 1 liter a day). It is very rich in potassium. I find it really helps me. It is expensive, so I doubt I would drink it everyday if I were that unwell regularly, but it works for me to have it on hand for more severe flares.

As far as improvement, if you improved before you are likely to again, IMO. Most people w POTS do get better according to the literature, although many can have flare-ups from time to time.

Take care and hope you feel better soon.

[Guest Alex]

Hi Tracy,

welcome to the group.

I hope you're going to be able to find some answers here.

To get back to your question: my dr recommended up to 15 g of salt a day. Obviously I'm nowhere near that, nor am I trying to work my way up to that amount.

What I do is monitor my blood pressure, (I take it 3-4 times a day lying down and standing) and if my numbers are on the low side for me I take 1/2 tsp of salt mixed with a large glass of V8 or plain tomato juice. The other things I have tried are chicken broth, or even vegetable broth with a bit of extra salt (1/2 tsp to one bowl).

I have to confess that my stomach is quite "angry" with me at the moment, despite all the nexium, tums, etc I'm taking. Salt is pretty harsh on my stomach, but I'm trying to follow doctor's orders. Does it help? Not quite sure - my blood work and urine analysis are by the book, but my bp is still low at times (even though I have no dizzines or lightheadedness associated) and my standing pulse is almost consistently over 100 lately despite all the meds I'm on, the 3+ liters of water a day, and the supplemental salt.

Alex

[songcanary]

Hi Tracy,

I feel better with lots of fluids so I add 1 teaspoon of iodized sea salt to 2 liters of tap water and drink it throughout the day. This is what was recommended by my doctor at Cleveland Clinic. I drink a bottle of coconut water every morning and I also salt my food.

[Relax86]

Thanks to all of you for your response. I did try some coconut water and liked how I felt after. So that's something I'll add to my bag of tricks. I am happy my family Doc does have a POTS awareness and in absence of other things it's possibly an option as a diagnosis. I don't have a definitive diagnosis and not always convinced that I'm on the right track....this thing keeps me guessing. I'm happy to have this forum as a resource...I try to not overdose the info because it can make me crazy thinking too much but I'm glad to be here so I can learn.

[POTLUCK]

Mayo clinic said it was very important to take a lot, and the grams of sodium translated to several teaspoons. I asked my cardio who treats POTS if I should take it if I have hyperadrenergic POTS being as the blood pressures are high and he was unsure. I therefore do take it but do not worry. It does not feel like it makes any difference to me. I just put lots of salt on almost everything. Kind of like my food that way.

[Alaska]

I go for 2-3 teaspoons a day of iodized salt. I think there is something about using iodized that helps me more, maybe helps the thyroid functioning. I also make sure to eat bananas during the day.