We agreed that we will check my potassium every week to see how I am tolerating the large doses of potassium. So far they have been good,
Hi Idie. This actually relates to one of my many concerns. My doc has given me a standing order to check potassium twice a week if I want (so far I have only had it checked twice). Today I had him add sodium (long story). Both have been fine when tested. But my understanding of both potassium and sodium is that they can change literally in minutes, going high or low enough to be life-threatening, particularly overnight, long before the lab opens. So it doesn't really give me much comfort that my numbers are in range.
I don't mean to worry you at all. I'm just trying to help us both face reality if that's what it is. I mean I'm not sure but I just don't think lab numbers when I've had plenty of potassium to drink really mean much.
One of the first studies that I read, when I realized that I might be going through a refeeding, was this one:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
I'm not sure you remember but I believe I'm currently refeeding after over a year of a very restrictive "low acid," plant based diet, while taking high doses of pepsid and Reflux Gourmet.
Anyway, I haven't read that study in a while. But just from memory, they essentially say that doctors rarely recognize this condition (are we surprised at all??), that it's life-threatening, there's no clear protocol, and that the person needs to be hospitalized, with nutritionists included in the care, and with cardiac monitoring. I mean it's complex. And yes we can look at symptom lists (which I do often now). But we can also be wrong. I'll give you an example that I *might* have discovered today; I'm still working out how or whether this might apply to me.
I had an absolutely dreadful night last night (in part or maybe in whole bc I took a stimulating electrolyte drink too late yesterday; lesson learned). I only slept two hours. I can't even remember now all of the details. But last night I developed a SEARING headache. Like really, really bad. I started thinking: I must be low in sodium. My friend (a scientist) mentioned that she thought that was possible bc I was ingesting so much potassium + water. And I don't eat much sodium bc I don't each many processed foods. I do put salt on my food but not a ton. Plus, I exercise and sweat. So this could possibly add up -- basically I thought too little sodium must be causing my headache. I had never seen "headache" in any list for low potassium, so I was really concerned. This headache was SO bad that I really thought I might have brain swelling and need to go *again* to the ER. I actually got out of bed a few times with the intent to go to the ER. But then I decided just to wait a little while. Of course I was slowly drinking salt water throughout this time. I sent an email to my doc, to check sodium and potassium levels. That finally happened this morning, and both were in mid-range.
Thankfully my headache was improving but it still wasn't gone. Through this whole thing, I decided that, regardless of the numbers, I obviously need more sodium when I thought about it (didn't help that I started reading a book about salt -- talking about all of the important health benefits of salt -- and I'm an athlete in Florida with big hopes / dreams / plans of getting back to my normal activity level). So I decided that I would add sodium to my regular water, and any potassium water, too.
Over the course of today, I didn't drink as much potassium in the morning (largely bc I can't tolerate the citric acid in the electrolyte drink that I like best -- so I skipped my morning dose -- plus I was at the hospital getting labs run).
Oh! Also, yesterday morning, since I could no longer take my preferred electrolyte drink (bc of the citric acid burning my throat), I increased my straight potassium (gluconate) + water to 500 mg, which is almost the amount in the electrolyte drink (which has 550). But before I could finish, at about maybe 450 mg, it might have just been a coincidence, but I started having noticeable chest pains. They were not severe. But they were enough to make me STOP. Like, yeah, no thanks. That was a hard lesson bc I couldn't tolerate 500 unless it was in the electrolyte mix, which has about 140 sodium and other minerals.
So anyway back to today. Not much potassium in the morning. Headache getting better. And because I still had a little headache, I decided to drink more salt water (actually Utah Sea Minerals -- 1/4 tsp in distilled water). I had been feeling tired but suddenly, like clouds clearing on a rainy day, everything was perfect. I felt great! No headache, and life was good for a few minutes. I felt like a million bucks.
And I figured I had my answer. It WAS low sodium, after all. I mean screw the tests. I had my proof.
Then about 30 min later, I started feeling that tired feeling that I have been associating with low potassium. I checked my BP and it was going down. So I decided to make my potassium drink, and started sipping. Within a few minutes -- BAM -- headache back in it's full glory. This caused a panic bc last night, this headache was BAD and would not stop, all night, and into the morning. So I immediately stopped drinking the K, and went for some more salt water. That didn't seem to be helping (wasn't hurting, either). So then I poured some plain distilled water, starting drinking, and that finally helped.
(Incidentally, at this moment, I almost CANNOT HEAR what has been absolutely RAGING LOUD tinnitus at times, and never quiet. It's amazing and I'm sure that is healing from B12.)
So the moral of the story for me was confusing. My issue, at least at times, MIGHT be low sodium. I had my first clue when you guys mostly had high BP (which I have also had -- and which I do still think / assume is low potassium). I have also read doctors saying that potassium can cause BP fluctuations, so maybe those have been caused by K. But maybe sometimes my problem has been sodium? Or too much potassium?
I mean it's so hard to tell. I think that's why that study said basically: this is HARD. We need to monitor people, etc.
In that scenario, since we can't be monitored, I really believe that it is just not totally safe to let whatever process run wild, causing a drastic increase in need for potassium. And all of these nutrients are complex and varied. Like what is causing my stomach bloating still?? Why did my reflux improve but now sometimes comes back and is really bad? Is that potassium? Or folate? Or just not enough healing yet from B12? Potassium itself is complex -- and some the high K symptoms could seem like something else. I did a little digging today and found sources saying that high potassium can cause headaches. That was not easy to find so this doesn't seem like maybe a common symptom. But bad headache is classic for hyponatremia. I mean, even I knew that!
As soon as I developed the headache, I was just sure it was low sodium. But I now think that the potassium was causing the headache. So maybe I had too much? I don't know, but I don't want headaches.
(I'm extremely hopeful now that this means I will be able to resume my active lifestyle soon, just with more sodium; however it still makes no sense to me that suddenly I would need more sodium.)
I don't know what I'm going to do. I just pray that I don't have to continue taking potassium, somehow, someway. And I know that I can't handle the shots probably more than once a week, *maybe* every 5 days if I'm lucky. I just can't continue with higher and higher potassium doses (if that's even what I personally need).
Speaking of potassium, someone on Facebook shared this post, which is kind of interesting. I couldn't make my way through the comments though. There's always just so much with this stuff:
http://howirecovered.wpengine.com/u...5PxovUo0i4Vd0MhWOFLIVr6QB4R-N9UW406Xu6tBYShqg
