Ow! Muscle cramps keeping me up at night, and leading to permanent injury

[NilaJones]

@NilaJones
Are the cramps only at night? I don't want to introduce another variable, but I wonder if heightened nighttime cortisol is a factor?
S.

Yes, only at night. Cortisol?

 

[NilaJones]

@Freddd, @caledonia, @snowathlete, @Critterina
I forgot to tag you all in my reply to you on the previous page, and don't know if it works to add tags in an edit .

 

[Star-Anise]

@NilaJones
Dunno. I just find it interesting that it's only at night. I know I used to have heightened nightime cortisol & I would be ++restless. I remember reading about how the crease in the sheet would be bothersome to you...
I used a product called Seriphos to help block the cortisol.
http://www.interplexus.com/pdf/seriphos.pdf

I'm out of depth here, but I think sometimes as you are increased mB12 it can cause increased cortisol release... Freddd talks about it in this forum a bit:
http://forums.phoenixrising.me/index.php?threads/methyl-b12-side-effects.13234/page-2

I'm thinking if you are really sensitive to increases in cortisol (I imagine those receptors have been underused for a long time), then it could cause all kinds of wonkiness (including histamine like reactions, and insomnia).

Just a thought. Let me know if you want to try the Seriphos (contact me by email), xoxo S.

 

[NilaJones]

Hmm... I don't feel restless or anxious or have trouble sleeping on my current dose of b12, although insomnia is one of the reasons I am not taking more. So, maybe?

It's normal for restless legs to be primarily at bedtime. I don't know about the others. I don't even know what to call them, medically, so I don't know how to google.

 

[Critterina]

I am the princess and the pea.

We are indeed sisters!

 

[NilaJones]

We are indeed sisters!

Soul sistah!

::high fives::

 

[NilaJones]

Oh,I neglected to say yesterday -- I think I found the reasons for my sudden potassium crises: Dates, and salt.

I had been eating a lot of dates everyday, and I ate fewer. I did not realise they were so high in potassium. Also, I had been craving salt for months, and got used to putting a lot in my food. The craving ebbed, and I still had the habit of eating salt. Did not realise it can counteract potassium.

But I have a past experience, a time when I could not get enough potassium. Then someone suggested I try zinc and it turned out to be the real culprit. Massive amounts of potassium, or a small amount of zinc, either one eased the symptoms. So I am aware that one need can masquerade as another.

I will try GABA, and welcome other ideas!

 

[caledonia]

@Freddd

This is what I don't get - how can supplementing with too low of an amount of methylfolate cause a deficiency. You're already deficient.

It wouldn't be enough to alleviate the deficiency, but it shouldn't make you worse, just not make you better.

 

[NilaJones]

Hi folks .

I got some potassium salt substitute at the store today. But to me it does not taste salty! Am I just a mutant, or does this mean something?

Of course I put it in a big pot of stew before I tasted it...

 

[caledonia]

Hi folks .

I got some potassium salt substitute at the store today. But to me it does not taste salty! Am I just a mutant, or does this mean something?

Of course I put it in a big pot of stew before I tasted it...

What I've found is that if you need salt, a large amount of salt will taste good to you, but horribly salty to a normal. The same sort of thing seems to work for magnesium and potassium. If you have the right amount, like someone said on here, it will taste like "liquid unicorn" - the most wonderful thing you've ever tasted, and you'll just gulp it right down.

If it's too much it will taste bad and you won't want to drink it. If it's not enough, it will seem like it's lacking something.

ps. I don't know if No Salt, etc. is the best form.

 

[NilaJones]

Thanks, caledonia .

I do feel that way about some things. I mentioned in another thread about eating salt straight out of the shaker when I really need it. But magnesium citrate, straight in water, tastes like I imagine skunk pee would, every time .

Are you referring to the other ingredients in the salt substitute? I was a little alarmed to see them on the label, and I don't know what they are (good, bad, indifferent).

My main source of K+ is from high-potassium foods. But there is a limit to how much food I can eat in a day! Is the fake salt not good solution to that?

What I've found is that if you need salt, a large amount of salt will taste good to you, but horribly salty to a normal. The same sort of thing seems to work for magnesium and potassium. If you have the right amount, like someone said on here, it will taste like "liquid unicorn" - the most wonderful thing you've ever tasted, and you'll just gulp it right down.

If it's too much it will taste bad and you won't want to drink it. If it's not enough, it will seem like it's lacking something.

ps. I don't know if No Salt, etc. is the best form.

 

[Freddd]

Thanks, caledonia .

I do feel that way about some things. I mentioned in another thread about eating salt straight out of the shaker when I really need it. But magnesium citrate, straight in water, tastes like I imagine skunk pee would, every time .

Are you referring to the other ingredients in the salt substitute? I was a little alarmed to see them on the label, and I don't know what they are (good, bad, indifferent).

My main source of K+ is from high-potassium foods. But there is a limit to how much food I can eat in a day! Is the fake salt not good solution to that?

NOW Foods and others make a pure 100% potassium chloride granules that can be used as a salt substitute without any additives to keep it from caking. Potassium chloride has the peculiar characteristic of being sweet in low concentration and salty tasting in higher concentration. It's a lot cheaper than potassium gluconate per mg of elemental K.

 

[NilaJones]

NOW Foods and others make a pure 100% potassium chloride granules that can be used as a salt substitute without any additives to keep it from caking. Potassium chloride has the peculiar characteristic of being sweet in low concentration and salty tasting in higher concentration. It's a lot cheaper than potassium gluconate per mg of elemental K.

Thanks, Freddd . I am also looking into ways to do foot soaks with potassium.

So far, eating more dates and less salt is doing the trick. Now to try to up my b12 a little, and keep minerals in balance...

 

[ahmo]

Freddd said: ↑
NOW Foods and others make a pure 100% potassium chloride granules that can be used as a salt substitute without any additives to keep it from caking. Potassium chloride has the peculiar characteristic of being sweet in low concentration and salty tasting in higher concentration. It's a lot cheaper than potassium gluconate per mg of elemental K.
Thanks, Freddd . I am also looking into ways to do foot soaks with potassium.

This sounds great. A cheaper K+ I can put in my footbaths. Next iherb order. Thanks.

 

[Freddd]

@Freddd

This is what I don't get - how can supplementing with too low of an amount of methylfolate cause a deficiency. You're already deficient.

It wouldn't be enough to alleviate the deficiency, but it shouldn't make you worse, just not make you better.

Hi Caladonia,

That is one reason it appears paradoxical and causes much confusion, and has for 50 years of research. For starters, I have no idea how much the body has to have. I have never seen a number given in any research. The dose of supplements sizes was limited to what they hoped wouldn't cause SACD via lack of b12, not anything to do with actual sufficiency. Until a few years ago it wasn't even possible to find out what folate sufficiency actually looks like and much was considered b12 deficiency. It is these "triage" levels the research talks about. It is possible to have sufficient folate on some of these triage levels and have outright deficiency on other triage levels.

My description of it based on observing myself and many others is that a low dose ie 200mcg, appears to start an entire layer, more healing than the 200mcg can sustain. The body then appears to direct folate from other triage levels to the level(s) that are turned on causing immediate deficiency/insufficiency symptoms on the sacrifice level(s). So for me insufficiency first hits on my epithelial layer; edema (kidneys are a special epithelial tissue) angular cheilitis, acne type lesions, IBS, lung inflammation, breakup and peeling of skin around nails and fingertips, MCS, allergies and more as it continues. When I get those controlled usually no others start up.

 

[NilaJones]

I sure appreciate your posts here, Freddd! I just found the 'symptoms' thread this morning. I have severe inflammation issues, and either I had no idea or I had completely forgotten, that b12 may be the problem, there, too. Wow.

Hi Caladonia,

That is one reason it appears paradoxical and causes much confusion, and has for 50 years of research. For starters, I have no idea how much the body has to have. I have never seen a number given in any research. The dose of supplements sizes was limited to what they hoped wouldn't cause SACD via lack of b12, not anything to do with actual sufficiency. Until a few years ago it wasn't even possible to find out what folate sufficiency actually looks like and much was considered b12 deficiency. It is these "triage" levels the research talks about. It is possible to have sufficient folate on some of these triage levels and have outright deficiency on other triage levels.

My description of it based on observing myself and many others is that a low dose ie 200mcg, appears to start an entire layer, more healing than the 200mcg can sustain. The body then appears to direct folate from other triage levels to the level(s) that are turned on causing immediate deficiency/insufficiency symptoms on the sacrifice level(s). So for me insufficiency first hits on my epithelial layer; edema (kidneys are a special epithelial tissue) angular cheilitis, acne type lesions, IBS, lung inflammation, breakup and peeling of skin around nails and fingertips, MCS, allergies and more as it continues. When I get those controlled usually no others start up.

 

[caledonia]

Hi Caladonia,

That is one reason it appears paradoxical and causes much confusion, and has for 50 years of research. For starters, I have no idea how much the body has to have. I have never seen a number given in any research. The dose of supplements sizes was limited to what they hoped wouldn't cause SACD via lack of b12, not anything to do with actual sufficiency. Until a few years ago it wasn't even possible to find out what folate sufficiency actually looks like and much was considered b12 deficiency. It is these "triage" levels the research talks about. It is possible to have sufficient folate on some of these triage levels and have outright deficiency on other triage levels.

My description of it based on observing myself and many others is that a low dose ie 200mcg, appears to start an entire layer, more healing than the 200mcg can sustain. The body then appears to direct folate from other triage levels to the level(s) that are turned on causing immediate deficiency/insufficiency symptoms on the sacrifice level(s). So for me insufficiency first hits on my epithelial layer; edema (kidneys are a special epithelial tissue) angular cheilitis, acne type lesions, IBS, lung inflammation, breakup and peeling of skin around nails and fingertips, MCS, allergies and more as it continues. When I get those controlled usually no others start up.

It does make sense that the body would choose to prioritize more critical areas to send the methylfolate to (or send healing to or however it should be said), and to leave less critical areas deficient.

Then the next question is, why do some people have this effect, and not others. Are the ones who get the insufficiency just massively more depleted than others? It seems like if you were that depleted, you would already be dead.

I asked the same question over at the MTHFRsupport forum and one of the docs answered back with this:

It's a very good question. There are many factors involved including degree of illness, other snps, gastro integrity, etc. some would say to check RBC folate levels to see where you are with repletion, while others would say to increase intake until you feel good. I have my patients start low and go slow.

 

[zzz0r]

It does make sense that the body would choose to prioritize more critical areas to send the methylfolate to (or send healing to or however it should be said), and to leave less critical areas deficient.

Then the next question is, why do some people have this effect, and not others. Are the ones who get the insufficiency just massively more depleted than others? It seems like if you were that depleted, you would already be dead.

I asked the same question over at the MTHFRsupport forum and one of the docs answered back with this:

Well @caledonia I am with @Freddd on this one. Freddds has described with details all my symptoms and the way they turn on or turn off at different folate dosages and these are amazing observations to have done. My body behaviour regarding folate is being describe by what freddd isa saying to be paradoxical folate insuffeciency. I do not know if it is the same for everyone but I do believe that there are people that make the mistake to descrease the folate when they do have start up symptoms instead of increaseing it and find a dosage where the symptoms stop! For me this dosage is 4.8mg or somewhere near there.

 

[caledonia]

Well @caledonia I am with @Freddd on this one. Freddds has described with details all my symptoms and the way they turn on or turn off at different folate dosages and these are amazing observations to have done. My body behaviour regarding folate is being describe by what freddd isa saying to be paradoxical folate insuffeciency. I do not know if it is the same for everyone but I do believe that there are people that make the mistake to descrease the folate when they do have start up symptoms instead of increaseing it and find a dosage where the symptoms stop! For me this dosage is 4.8mg or somewhere near there.

When people tell me they have these symptoms, I totally believe them. It's not me vs. Freddd. We're totally in agreement on this and many (most? all?) other points.

However, I'm just saying that not everyone has them (because I don't), and then I'm wondering why some people would have them and some don't.

If I can think of a way to turn this into a poll or survey or questionnaire, I may make a separate post and see if we can figure out who might be one of the ones who need lots of methylfolate (based on SNPs, gut health and so on). Most everyone on here has a severe level of sickness so that's almost a given.

Of course, there's always our good friend "trial and error".

 

[Freddd]

It does make sense that the body would choose to prioritize more critical areas to send the methylfolate to (or send healing to or however it should be said), and to leave less critical areas deficient.

Then the next question is, why do some people have this effect, and not others. Are the ones who get the insufficiency just massively more depleted than others? It seems like if you were that depleted, you would already be dead.

I asked the same question over at the MTHFRsupport forum and one of the docs answered back with this:

Hi Caladonia,

Then the next question is, why do some people have this effect, and not others. Are the ones who get the insufficiency just massively more depleted than others? It seems like if you were that depleted, you would already be dead.

I've been asking this question for 11 years. People who don't have partial methylation block, methyltrap and/or partial ATP block don't have any noticeable responses to MeCbl, AdoCbl, l-methylfolate and/or l-carnitine. The more and stronger their symptoms the more and stronger their responses.

Amounts of b1, b2 and b3, folic acid, folinic acid and sometimes veggie folates, and probably other things affect the strength of this paradoxical folate deficiency response. Some people respond with blatant symptoms and some with only one or two subtle symptoms, perhaps such as edema or canker sores or other seemingly disconnected symptoms.

I almost was dead from folate deficiency in the form of congestive heart failure and everything else in my body was falling apart. I had decades of delayed or poor tissue formation. How long does it take to repair 30 years of damage?

My partner has none of these symptoms and has only the barest response to a CNS penetrating dose of MeCbl/AdoCbl and no effect at all from l-methylfolate or L-carnitine. She tried four forms and none were any different.

In reading about the "triage", the studies were always about people with things going wrong, often pernicious anemia. I have no idea if it has ever been studied in healthy people.