flare up, maybe?

[shakyradical]

hey folks,

having some cardiac symptoms bothering me.
heart rate and blood pressure have been controlled with midodrine and lancora for a couple years, and now they seem pretty high and unstable. can feel heart beating hard most of day.

I was taking ketones and doing a low carb day once a week as well as adding salt in to diet (couple grams of sodium)
and then It started.

kind of figure its messed up my electrolytes but not sure what to do to rebalance them.
I know too high or too low can Both be bad news....


aaaaand now panic attacks keeping me up all night.

any thoughts?
experience?

 

[Lovalab]

Maybe get electrolytes checked? If sodium is high, potassium maybe low

 

[shakyradical]

Maybe get electrolytes checked? If sodium is high, potassium maybe low

thanks for the reply.

 

[Mary]

@shakyradical - here's an article about electrolytes and keto: https://www.carbmanager.com/article/xtqunbeaacaacgdw/importance-of-electrolytes-on-keto/

Low potassium is known for causing cardio symptoms. An easy way to see if you need more potassium is to drink 2 or 3 glasses of low-sodium V-8 (higher in potassium than regular V-8) and see if your symptoms improve in a couple of hours. Coconut water also has a fair amount of potassium but low-sodium V-8 is higher, 900 mg. in 8 ounces. I've experienced low potassium - it makes me quite tired and also causes feet and leg cramps for me. Many people do get cardio symptoms with low potassium.

You could ask your doctor for an electrolyte test but in the meanwhile you could just also try drinking the low-sodium V-8 (or coconut water) and see if it helped.

The article also mentions magnesium and calcium levels as possibly being affected by the keto diet as well.

 

[shakyradical]

@shakyradical - here's an article about electrolytes and keto: https://www.carbmanager.com/article/xtqunbeaacaacgdw/importance-of-electrolytes-on-keto/

Low potassium is known for causing cardio symptoms. An easy way to see if you need more potassium is to drink 2 or 3 glasses of low-sodium V-8 (higher in potassium than regular V-8) and see if your symptoms improve in a couple of hours. Coconut water also has a fair amount of potassium but low-sodium V-8 is higher, 900 mg. in 8 ounces. I've experienced low potassium - it makes me quite tired and also causes feet and leg cramps for me. Many people do get cardio symptoms with low potassium.

You could ask your doctor for an electrolyte test but in the meanwhile you could just also try drinking the low-sodium V-8 (or coconut water) and see if it helped.

The article also mentions magnesium and calcium levels as possibly being affected by the keto diet as well.

well that's an easy sell I actually really like low sodium v-8.

yayay!

got my electrolytes tested via blood, but I'm still unsure cause blood isn't always perfect indicator.

I did hair analysis a few times and it showed my potassium excretion off the charts.
so maybe an additional need in me or something.

 

[Mary]

got my electrolytes tested via blood, but I'm still unsure cause blood isn't always perfect indicator.

You're right about this. It's been found that people with ME/CFS can have normal serum potassium levels but still be low intracellularly - see this post which explains why -

I first became aware of low potassium in 2010 when I started taking methylfolate. It caused a rather sudden and steep fall in my potassium levels due to refeeding syndrome. It seems to be very common in people with ME/CFS - apparently we don't have the energy to get enough potassium into our cells overall and then the methylfolate on top causes an increase in the need for potassium, which causes a functional potassium deficiency.

So you might have a greater need for potassium. I've been taking supplemental potassium ever since 2010 (about 1000 mg a day) and every once in awhile I still get low potassium symptoms. For me it's usually foot cramps but a lot of people get cardiac symptoms with low potassium.

 

[shakyradical]

interesting,
I started taking folinic acid a couple weeks ago.....
not sure if it has same effect as methylfolate, but I'm gonna cut it and see.

 

[shakyradical]

You're right about this. It's been found that people with ME/CFS can have normal serum potassium levels but still be low intracellularly - see this post which explains why -

I first became aware of low potassium in 2010 when I started taking methylfolate. It caused a rather sudden and steep fall in my potassium levels due to refeeding syndrome. It seems to be very common in people with ME/CFS - apparently we don't have the energy to get enough potassium into our cells overall and then the methylfolate on top causes an increase in the need for potassium, which causes a functional potassium deficiency.

So you might have a greater need for potassium. I've been taking supplemental potassium ever since 2010 (about 1000 mg a day) and every once in awhile I still get low potassium symptoms. For me it's usually foot cramps but a lot of people get cardiac symptoms with low potassium.

though now I'm wondering if it's an issue with methylation for yourself....

 

[Mary]

though now I'm wondering if it's an issue with methylation for yourself....

I'm sure I have issues with methylation. It's complicated. When I first took methylfolate in 2010, it gave me an almost immediate boost in energy, it was amazing, I felt so good. And then a day or 2 later I was hit with severe fatigue. Fortunately I had read a lot of PR member Freddd's posts where he mentioned the potential for potassium tanking when trying to remedy a B12 or methylfolate deficiency. I'd already been taking methylcobalamin for many years.

Anyways, I started taking potassium after that severe fatigue hit - I titrated up over a couple of days until I got to 1000 mg (in divided doses) and that's when the severe fatigue went away, and I was able to keep taking the methylfolate.

I urge you to read the post I linked above which talks about how we can have low intracellular potassium despite normal blood levels. It also talks about why potassium may be needed when starting a methylation protocol.

You also might want to read about refeeding syndrome - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Although all the literature talks about refeeding syndrome affecting those who are starving or severely malnourished, many many people with ME/CFS react the same way to methylB12 and methylfolate - I think we are depleted in several different nutrients.

 

[lenora]

Hello everyone.....I just wanted to say that drinking Pedialyte will help restore the balance of electrolytes. It's extremely sweet, so be prepared. There are also other drinks, so you will have choices.

I've had electrolyte problems in the past, a heart condition and high b.p. and a number of other "things."
My electrolyte problems began slowly with losing the sight in my l. eye. It was worse each day. Then I awakened one more, couldn't see out of my right eye either, nor use my l. leg. Do you know it still didn't dawn on me that something was wrong? I was in a different country mentally, it seemed.

So if you think you have problems, try to avoid them. I ended up having a heart attack, two different types of epilepsy and autoimmune encephalits. I was in a coma and very ill for quite a time. It's the separate things that make us invalids. We have to be ever aware. Good luck in finding out the problem.....and don't rely on sea salt to provide a necessary thing called iodine. It's very important also.
Yours, Lenora

 

[shakyradical]

hmm, I cut all methyl sups out a while ago.
more reason not to take them I suppose.

I'm sure I have issues with methylation. It's complicated. When I first took methylfolate in 2010, it gave me an almost immediate boost in energy, it was amazing, I felt so good. And then a day or 2 later I was hit with severe fatigue. Fortunately I had read a lot of PR member Freddd's posts where he mentioned the potential for potassium tanking when trying to remedy a B12 or methylfolate deficiency. I'd already been taking methylcobalamin for many years.

Anyways, I started taking potassium after that severe fatigue hit - I titrated up over a couple of days until I got to 1000 mg (in divided doses) and that's when the severe fatigue went away, and I was able to keep taking the methylfolate.

I urge you to read the post I linked above which talks about how we can have low intracellular potassium despite normal blood levels. It also talks about why potassium may be needed when starting a methylation protocol.

You also might want to read about refeeding syndrome - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Although all the literature talks about refeeding syndrome affecting those who are starving or severely malnourished, many many people with ME/CFS react the same way to methylB12 and methylfolate - I think we are depleted in several different nutrients.

I take another form of b12 now. hydroxocobalamin I think..

and yeah folinic acid rather than methyl folate.

maybe would be benefit to you as well.

my worry with potassium sups is that too much is also potentially deadly.
how did you navigate that issue?

 

[Mary]

more reason not to take them I suppose.

I don't think so. I needed the folate, badly - that's why it made me feel so good. The refeeding syndrome reaction doesn't mean I don't need folate. I'm sure it happened because I have ME/CFS but it doesn't mean I don't need folate. Did you read the post I linked above about low intracellular potassium and ME/CFS? It also explains why potassium is needed when doing methylation treatment. So the solution is not to stop taking folate - it's to replenish the potassium which is being depleted.

my worry with potassium sups is that too much is also potentially deadly.
how did you navigate that issue?

I read a lot. And found out that the RDA for potassium is 4700 mg. So the 1000 mg I take daily (in divided doses) is less than 25% of the RDA. They always stress cutting back on salt for high BP but hardly ever mention that low potassium (which is quite common) can also lead to high BP. I don't want to go back to how I felt pre-methylfolate. I hardly ever had real energy or felt well. So I'm happy to keep taking the potassium. I'd be even happier if we had a solution for ME/CFS and I didn't have to take the million things I take to function.

Why do you take folinic acid instead of methylfolate?

btw, I had a similar reaction when I started taking thiamine maybe 7 years ago? I've lost track. The same thing happened - almost immediate boost in energy, really nice, and then severe fatigue. But potassium did nothing for this fatigue. It took more digging (longer than it should have) for me to discover that the thiamine had caused my phosphorous to tank. Reading the article I linked above re refeeding syndrome I learned that hyphophosphatemia is the hallmark of refeeding syndrome. Where do you get phosphorus? I read that dairy is high in phosphorous so I drank 3 glasses of kefir, the only dairy I had, and within a few hours that horrible fatigue was disappearing. Again I was very glad because this meant I could keep taking the thiamine. I eventually started taking a phosphorous supplement which took some digging to find.

Anyways, nothing with this illness is simple. I've learned a lot and am quite a bit better than I was some 15 years ago but it has taken a lot of work and reading and experimenting.

 

[shakyradical]

I don't think so. I needed the folate, badly - that's why it made me feel so good. The refeeding syndrome reaction doesn't mean I don't need folate. I'm sure it happened because I have ME/CFS but it doesn't mean I don't need folate. Did you read the post I linked above about low intracellular potassium and ME/CFS? It also explains why potassium is needed when doing methylation treatment. So the solution is not to stop taking folate - it's to replenish the potassium which is being depleted.



I read a lot. And found out that the RDA for potassium is 4700 mg. So the 1000 mg I take daily (in divided doses) is less than 25% of the RDA. They always stress cutting back on salt for high BP but hardly ever mention that low potassium (which is quite common) can also lead to high BP. I don't want to go back to how I felt pre-methylfolate. I hardly ever had real energy or felt well. So I'm happy to keep taking the potassium. I'd be even happier if we had a solution for ME/CFS and I didn't have to take the million things I take to function.

Why do you take folinic acid instead of methylfolate?

btw, I had a similar reaction when I started taking thiamine maybe 7 years ago? I've lost track. The same thing happened - almost immediate boost in energy, really nice, and then severe fatigue. But potassium did nothing for this fatigue. It took more digging (longer than it should have) for me to discover that the thiamine had caused my phosphorous to tank. Reading the article I linked above re refeeding syndrome I learned that hyphophosphatemia is the hallmark of refeeding syndrome. Where do you get phosphorus? I read that dairy is high in phosphorous so I drank 3 glasses of kefir, the only dairy I had, and within a few hours that horrible fatigue was disappearing. Again I was very glad because this meant I could keep taking the thiamine. I eventually started taking a phosphorous supplement which took some digging to find.

Anyways, nothing with this illness is simple. I've learned a lot and am quite a bit better than I was some 15 years ago but it has taken a lot of work and reading and experimenting.

yeah I'm supposed to pound salt for the POTS, but I have a gene snp that makes me susceptible to salts negative affect on blood vessels.


I take the folinic acid for exactly the reason with methylation cycle being janky.
same reason I cut methylcobalamin.


thiamine is b1 right?
I lost track....

I have no idea about phosphorus, I'm vegan so I imagine from vegetables

but I sure do enjoy coconut kefir.

havn't read yet the article, I'm pretty tapped today so just doing bare minimum, but am now gonna take a look