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Lack of chatter about the Ketogenic Diet

Jill

Senior Member
Messages
209
Location
Auckland, NZ
As my gastroparesis has lessened over recent months I decided to get back into ketosis however this time encounted massive difficulties due to my POTS. First few days no problem, 3-4 day felt like crap, headache, low carb flu, whatever. Day 5-6-7 massive heart racing and pounding problems. I know this isnt rare and can be treated with electrolytes but I tried this in high and low amounts but it didnt really help. Multiple times through the day and especially through the night my heart would just go insane, like last year when my POTS was real bad.

I want to get back into keto as I was already feeling some of the benefits. I just wander if anyone has had a similair experience with POTS + keto. Does it go away after a few days or is it keto can be bad for some POTS subsets?

Today I couldn't handle it and upped my carbs to 120. I'm feeling much better ATM.
Hi ,
Yes this was my problem with keto. It helped everything but no matter how I tried I couldn't get fluid to retain and felt way more potsie than I've ever done before . I'm going to try it again in next few weeks and be v diligent about potassium . It was like magnesium didn't stay in me or effect the muscle cramps . I've read that potassium loss can cause the cramps now . I will be so pissed off if I've found help for one of my conditions only to have the treatment make another condition worse. It has crossed my mind as to whether or not to take florinef ? Have you thought of that ?
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
Hi ,
Yes this was my problem with keto. It helped everything but no matter how I tried I couldn't get fluid to retain and felt way more potsie than I've ever done before . I'm going to try it again in next few weeks and be v diligent about potassium . It was like magnesium didn't stay in me or effect the muscle cramps . I've read that potassium loss can cause the cramps now . I will be so pissed off if I've found help for one of my conditions only to have the treatment make another condition worse. It has crossed my mind as to whether or not to take florinef ? Have you thought of that ?
I am trying keto again and am on day 9ish, for the past 4 or 5 days I have experienced a significant worsening of POTS however am trying a few things to mitigate this and hope after a few more days my body will maybe settle into ketosis, we will see.
I am eating lots more veg this time.

I haven't had the chance to try florinef but don't think it'll do me any good. My pots is different as I don't crave salt nor water at all, something else is going on with me...
 

Gondwanaland

Senior Member
Messages
5,094
I haven't had the chance to try florinef but don't think it'll do me any good. My pots is different as I don't crave salt nor water at all, something else is going on with me...
Just brainstorming here, how about Magnesium chloride? This is something that raises BP for me personally. If too much, I suspect I should balance it with Calcium, but I haven't tested it yet since I avoid chloride supplementation. Lysine and K2 also raise my BP, so these would indeed need to be balanced with calcium.
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
Just brainstorming here, how about Magnesium chloride? This is something that raises BP for me personally. If too much, I suspect I should balance it with Calcium, but I haven't tested it yet since I avoid chloride supplementation. Lysine and K2 also raise my BP, so these would indeed need to be balanced with calcium.
Magnesium transdermally has helped me (not tried chloride form), yes, but low BP isn't the problem, I swing between moderately high and moderately low. As I say, it's not like the default POTS although I am sure it is POTS.
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Magnesium transdermally has helped me (not tried chloride form), yes, but low BP isn't the problem, I swing between moderately high and moderately low. As I say, it's not like the default POTS although I am sure it is POTS.
Keep us posted . As the sodium gets leached take salt ( or better no salt as it has potassium chloride in it ) . Plus mg. I plan to take slow k ( potassium) and like you eat more green leafy stuff ) as much as I don't crave it !! All the best . Keto Facebook groups are great for ideas and support . A lot of people with all sorts of pain conditions say it helps. Many with fibro on the page I'm on sat it's the first thing to help . I made some delicious strawberry fat bombs - unbelievably good .
 

sb4

Senior Member
Messages
1,659
Location
United Kingdom
Keep us posted . As the sodium gets leached take salt ( or better no salt as it has potassium chloride in it ) . Plus mg. I plan to take slow k ( potassium) and like you eat more green leafy stuff ) as much as I don't crave it !! All the best . Keto Facebook groups are great for ideas and support . A lot of people with all sorts of pain conditions say it helps. Many with fibro on the page I'm on sat it's the first thing to help . I made some delicious strawberry fat bombs - unbelievably good .
I stopped ketosis yesterday and my heart feels significantly better today. I have tried your suestions but had no luck unfortunately. It's wierd because I have been in ketosis many times before years ao.

I'm currently thinking the either
-Keto reduces my electrolytes and water and for some reason (POTS aldosterone/etc) replacing these doesn't help.
-Heart and brain run on sugar, it takes about 3 weeks to build keto enzymes. So maybe because my heart is already struggling, this dip in energy whilst transisting is too much and worsens my hearts preformance during this time.

I'm going to go around 50-100g carbs for a while and slowly drop it, and if I notice symptoms raise it. Maybe my body will have time to change enzymes this way slowly or adapt to electrolytes slowly. Or maybe keto is just bad for my kind of POTS?
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
I stopped ketosis yesterday and my heart feels significantly better today. I have tried your suestions but had no luck unfortunately. It's wierd because I have been in ketosis many times before years ao.

I'm currently thinking the either
-Keto reduces my electrolytes and water and for some reason (POTS aldosterone/etc) replacing these doesn't help.
-Heart and brain run on sugar, it takes about 3 weeks to build keto enzymes. So maybe because my heart is already struggling, this dip in energy whilst transisting is too much and worsens my hearts preformance during this time.

I'm going to go around 50-100g carbs for a while and slowly drop it, and if I notice symptoms raise it. Maybe my body will have time to change enzymes this way slowly or adapt to electrolytes slowly. Or maybe keto is just bad for my kind of POTS?
What a major bugger. I think it will be POTs. There must be something wrong with either mg/ ca or na/ k . I've just inducedlow blind myself using beta blockers, and it's very similar to what I remember
Her . It's bizzairre we can cope with a few days then run out of something . I suspect the same will happen to me .
 

Gondwanaland

Senior Member
Messages
5,094
I read a testimonial by a guy who's on keto saying that he eats 10g salt daily on his food + supplemental 1g potassium and 1g magnesium.

10g salt = ~5.7g sodium

Others take a mean of 5g salt daily in their food
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
I eat keto.

IMG_20180608_021839.jpg
 
Messages
79
Location
Seattle
@sb4, we are all so different in our version of this disease. for me it's totally obvious that carbs are a huge problem. however, similar to you, the big issues that i experience repeatedly with keto are carb cravings and attachment to eating "normal" foods, especially when my brain is fatigued and i'm not thinking clearly, or i feel particularly sorry for myself. all i can say is that, when i am sick, i get sicker if i eat carbs, and, if i eat carbs when i am not so horribly sick, the carbs shift me towards being more sick. all i would say, is ask yourself if carbs are truly causing symptoms - it should be plain to see over time, and the liver hunger and carb hunger will be a lot easier to tolerate once the situation is more fully understood and accepted, however, this does take time. years, in my case. in any event, these issues may not be pertinent for everyone with me/cfs as it's plain to see that we get here via several different scenarios.
 
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sb4

Senior Member
Messages
1,659
Location
United Kingdom
@serusaert Yeah I'm quite sure that my heart pounding (worst symptom) is significantly worse with carbs, however my digestion is significantly better. I don't yet know what ratios work for me, I recently have upped carbs and my bloating is far less and digestion far quicker but I have to deal with more palps.

I am no stranger to keto. I have been more or less eating paleo since 2009 with significant periods of eating keto. However, ever since my POTS got worse 2yrs ago, my POTS symptoms get drastically worse when entering ketosis. I have tried to push through this for 2 weeks+ and tried balancing my electrolytes etc but no beuno. I figure that either my liver function is now poor so I can't do gluconeogenesis well, or my adrenals are struggling, or something. I did a salivary cortisol and dhea test when in keto, cortisol was through the floor. I did it again when adding back carbs and it was normal...
 

ChrisD

Senior Member
Messages
475
Location
East Sussex
@sb4, we are all so different in our version of this disease. for me it's totally obvious that carbs are a huge problem.

I feel this strongly too, I presume because of a faulty Pyruvate dehydrogenase we are not able to process carbs and they convert glucose to Lactic acid - atleast in my case this is clear. For this reason i am considering using a pyruvic acid supplement.... anyone else thought about this?
 

Lolinda

J'aime nager dans le froid style Wim Hof.. 🏊‍♀️🙃
Messages
420
Location
Geneva, Switzerland
for me it's totally obvious that carbs are a huge problem.
For me, keto saved my life. I had full-score ME, slept 20h in 10 days and was unable to walk up stairs any more. Details on how I got out.
Guess what, I like keto :) :)

faulty Pyruvate dehydrogenase
You may want to look into thiamine deficiency. (Simpler to correct than PDH defects... so chose the former :D) Thiamine is crucial at that corner of the energy metabolism and if you go keto and get better it can be as simple as the fact that keto needs half the thiamine that normal metabolism needs. Science.
But there is a catch: It is impossible to get enough B1 on keto. My solution: 2g of a special very high B1 and low carb nutritional yeast cover my needs fully. In many European countries: Dr Ritter Edelhefe.
Other catch: before trusting your doctor to know how to measure B1 deficits, read here and here. The incorrect measurements costed me many months...

Wow. Does that graphic mean you get up to 10 elemental sodium per day? Or almost double that as salt?
Important question. It is indeed the elemental sodium. 100g salt = 38.6g elemental sodium. That is, my average 10g of sodium per day correspond to a 26g of salt. I have two reasons to eat this much salt: Keto needs more salt. A lot. And I have POTS and salt increases blood volume. For example, many people with POTS are unable to run or walk because the blood goes into the legs and their head runs empty ➞ presyncopal. In me this is as simple to fix as drink water plus take salt before and thus borrow a bigger blood volume for the time of training.

To anyone interested in keto but getting sleep probs: take a teaspoon of salt + a Mg-tab in warm water immediately before bed. This makes me sleep like a log. But I found it important to dive into the pillows right after the drink.

If Mg gets you tummy probs, use transdermal Mg-Cl. I use that and it resorbs like a charm, as proven by 24h urinary Mg. I know only one product that does not damage skin: "Health and Wisdom" Mg-Cl on iherb.

Then, if you find all that salt on keto disgusting, there is a simple trick: go to an organic shop, buy 1 bag of each and every unrefined salt you find, try them all. There are unrefined salts that are so tasty that you eat them for taste, with happiness. The sicence says that the other elements in it are so minuscule that they contribute nothing to nutrition, but the tongue can sense them! Exception: I dont use that beautifully colored Himalaya salt, because it has tons of fluoride, which is toxic.

Then, many people get constipated on keto. While there is some smart discussion that this is not at all because of keto itself but because of troublesome new foods that come with keto, there is a simple fix: eat tons of olives. Likely mechanism: sugar alcohols. Olives again contribute to that so useful salt intake on keto. Other trick for constipation: Grow fresh absynth herb and chew a small leave (you must love bitters for this. I mean, really LOVE :D)
Choline helps, too. I use it transdermal to avoid probs

Potassium: Look into potassium in kohlrabi. It has lots. Don't cook it, or only blanch it or drink the cooking water. :)

Here a few more things

...I am glad if other people profit from my stumblings into all possible keto pitfalls... :) Good luck and I hope for a smoother ride for you. :)
 
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