shaking while asleep - please help!

[Victronix]

Freddd and Rich both seemed to think the extra need for potassium was due to the creation of new cells, but both dbkita and Adreno were skeptical of that theory. I don't know if either of them offered any alternative theory, but if they're skeptical then so am I.

I think dbkita mentioned a possible defect in the potassium channels. Cells allow sodium and potassium in and out via channels, and if those are defective, then the balance is disrupted. I also read that potassium channels need magnesium to close, so if there is a deficiency, the channels can't close and you lose potassium. It's unusual that so many people ON HERE have this issue with potassium so my guess is that there is an over-arching reason why that encompasses both the susceptibility to ME/CFS and potassium deficiency.

Or else it's new RBCs. Or both.

 

[Victronix]

It's very common for those who have ME/CFS to have weak adrenals. The adrenals control the balance of electrolytes. If you have weak adrenals, you'll be leaking out electrolytes like crazy, and those will need to be replaced several times throughout the day.

I had normal serum cortisol, salivary cortisol and ACTH levels, yet still had all the potassium deficiency issues with starting B-12.

 

[boo85]

Lotus97 caledonia thank you so much for your help. I really appreciate it.

Ive stopped taking b12, even the hydro injections. The last time I had an injection was almost 3 weeks ago. I guess it's just taken longer for my body to adjust, because I've been on and off b12 for the past 4 months, and I don't think it agrees with my body.

Last night I had a bit of the twitching. Usually during the day it is ok, but at night it is worse, much like my other symptoms. I think you are right about the weak adrenals. I just feel really tired, each time after taking b12 - like my body is recovering. I'm taking 200mg of magnesium per day.

I agree with you that there is a greater need for potassium at night. I've thought all along that the reason why I get physical symptoms at night (between 7pm - 2am) is because that is when your body is rebuilding cells.

do iron levels have anything to do with methylation? because my ferritin levels used to be quiet low - less than 5, and last time it was checked it was about 11.I've been supplementing on and off recently, so my guess is it could be about 20 by now, but I'm not 100% sure until I get tested again. I'm aiming for a level of 80.

what about salt/sodium ratio? I've noticed that I feel better after eating potato chips.

do you think I should take vitamin C each day as well?

I've read this thread here - http://curezone.com/forums/am.asp?i=1900236 it seems to match with how I react to b12 as well.

How long would I need to be on magnesium and potassium supplements before taking b12 again (i f I do start taking it again, bit hesitant at the moment)?

 

[caledonia]

do iron levels have anything to do with methylation? because my ferritin levels used to be quiet low - less than 5, and last time it was checked it was about 11.I've been supplementing on and off recently, so my guess is it could be about 20 by now, but I'm not 100% sure until I get tested again. I'm aiming for a level of 80.

what about salt/sodium ratio? I've noticed that I feel better after eating potato chips.

do you think I should take vitamin C each day as well?

I've read this thread here - http://curezone.com/forums/am.asp?i=1900236 it seems to match with how I react to b12 as well.

How long would I need to be on magnesium and potassium supplements before taking b12 again (i f I do start taking it again, bit hesitant at the moment)?

The low iron will affect your Kreb's energy cycle. I remember my doc saying something about it helping to carry oxygen in the blood. So getting that level up should help with energy.

Yes, if you have weak adrenals, you'll also be leaking sodium and will crave salty foods. You should see all the potato chips I used to eat. So you should supplement with salt. Also the vitamin C, then either magnesium and/or potassium. They all work together to support the adrenals.

I see I've already discussed my homemade electrolyte drink. That's how I take those supps. They absorb a lot better in a liquid form. You'll feel a lot better. Someone on here said their drink tasted like "liquid unicorn". So now I think of that whenever I drink mine - lol.

My exact formula before I started taking B12 and folate was 1 cup of water, 4 pinches of salt, 1/4 tsp of BioEnergyC (vitaminC+ ribose), and 1 tsp of magnesium glycinate powder. I took that with breakfast, lunch, and supper. At bedtime, it was the same, except for 4 tsp of magnesium glycinate.

Ben Lynch suggests something similar called MTHFRade. http://mthfr.net/mthfrade-is-the-mthfr-drink-formula-have-yours-yet/2012/01/19/

The electrolytes just seem to leak out on a constant basis and don't build up stores. When you take them, the effect is instantaneous. So I would suggest, to get your electrolyte formula tweaked, and then anytime you feel ready to tackle the B12, add that. It's ok to take awhile to get there - this is a marathon, not a sprint.

Do you think you might have high histamine like the article you quoted?

Also have you had your SNPs tested and do you have the CBS mutation? Do you have a problem with foods, meds or supps that have sulfur?

I have the CBS mutation and had a stress/anxiety reaction until I treated for CBS. Then I could start to tolerate B12. I've worked my way up from literally 0.5mcg to 50mcg. If I go above that, I start to get metal detox symptoms that are a more than I care to deal with long term.

Same with methylfolate - started small and worked up to 83mcg. Above that, and the need for magnesium is too huge to deal with.

When the metal detox and the cell rebuilding are complete, I should be able to increase those amounts.

 

[Lotus97]

I remember Adreno saying something about if you're urinating a lot you might need more sodium and/or less potassium and if you're retaining water you might need more potassium and/or less sodium. I haven't noticed potassium really helping my symptoms, but I've felt better since I've starting adding sodium bicarbonate (baking soda) to my water (along with potassium just in case). It seems my symptoms over the past 3-5 months haven't been from overmethylation even though they're identical. I realized this after increasing my dose without experiencing an increase in symptoms. And I know what the symptoms are from my early methylation experiences in the fall and winter. I think maybe methylation is indirectly causing my symptoms by putting a strain on my body, but that's different than overmethylation.

 

[nkm]

I used to have a lot of "shaken out of sleep" episodes but for whatever reason, they stopped several months ago and now it's fairly rare.

Another thing that used to happen to me, which was the worst feeling ever, is where I would be awake and paralysed. I could hear what was going on around me but couldn't move or open my eyes. I absolutely hated it and apprently it is very rare. This too ceased and now is luckily a rare occurance.

 

[Victronix]

I remember Adreno saying something about if you're urinating a lot you might need more sodium and/or less potassium and if you're retaining water you might need more potassium and/or less sodium. I haven't noticed potassium really helping my symptoms, but I've felt better since I've starting adding sodium bicarbonate (baking soda) to my water (along with potassium just in case). It seems my symptoms over the past 3-5 months haven't been from overmethylation even though they're identical. I realized this after increasing my dose without experiencing an increase in symptoms. And I know what the symptoms are from my early methylation experiences in the fall and winter. I think maybe methylation is indirectly causing my symptoms by putting a strain on my body, but that's different than overmethylation.

Interesting observations. I find that methylfolate creates its own unique "side effects" for me, apparently since I'm not yet taking enough (still not yet at 1/2 of a 400 mg capsule), which also are not potassium related, like neck/shoulder muscle stiffness, foot arch pain and stiffness, mouth sensitivity (eat something too hot will not heal for days), knee joint pains, etc. When I slightly increase my dosage, a lot of problems suddenly vanish, but start to come back after a week or so.

The primary potassium deficiency symptoms I get are ear ringing, increased heart rate, palpitations, sweating (at night) and dry mouth.

 

[boo85]

Just a bit of an update - For the most part I discontinued the B12, and the shaking stopped, however, on the weekend I developed a nasty headache and head pains (and I don't usually get headaches or migraines). I would feel a hot/cold senstation on my temples, slight pain, feeling like my head was sunburnt.

So yesterday I took no more than 30mcg of B12, and this morning I took about 30mcg. I had a 250mcg tablet - broke that into 4, then halved that, but it's not 100% accurate. The pain and weird feeling in my head died down, so I'm guessing I got it because the b12 had worn off and my nerves still needed healing?

It just really stinks that I need B12 to heal, but my body doesn't react to it well.

 

[boo85]

Lotus97 caledonia Victronix

Ok, so the last time I took b12 was a week ago (see post above) and last night I felt really "wired" and I also had the twitching of my arms and chest while asleep. Like an electric shock, but without the pain. It has only happened a few times while awake, but almost always while I'm asleep. Why is this?

Funnily enough I didn't feel as scared as it was happening during the night. I had some potassium/electrolyte drink before going to bed. The chest twitching happens from when I go to sleep and dies down at about 3am (just a guess). It's hard to know how often or what it really feels like since I'm asleep when it happens.

Could it be just anxiety? Or perhaps SSRI withdrawal from the B12? Or even serotonin syndrome?

 

[caledonia]

Lotus97 caledonia Victronix

Ok, so the last time I took b12 was a week ago (see post above) and last night I felt really "wired" and I also had the twitching of my arms and chest while asleep. Like an electric shock, but without the pain. It has only happened a few times while awake, but almost always while I'm asleep. Why is this?

Funnily enough I didn't feel as scared as it was happening during the night. I had some potassium/electrolyte drink before going to bed. The chest twitching happens from when I go to sleep and dies down at about 3am (just a guess). It's hard to know how often or what it really feels like since I'm asleep when it happens.

Could it be just anxiety? Or perhaps SSRI withdrawal from the B12? Or even serotonin syndrome?

The wired thing is probably glutamate/GABA imbalance. Glutamate is excitatory and GABA is calming. You can take either GABA or theanine 3 times a day and before bed, and that will help at night. The glutamate thing can also cause anxiety.

You're still getting twitching while asleep - sounds like you need even more electrolytes. I suggest cranking it up until the twitching stops.

I doubt if it's serotonin syndrome - this is associated with SSRI's. You would either be in the hospital or dead. I've never heard of anyone having that from just supplements.

=-=-=-==-

Have you gotten any of the testing we suggested? Potassium, magnesium, 23andme SNPs? You may have to go through a CBS protocol before you can tolerate methyl supps like methylcobalamin, methylfolate or TMG (trimethylglycine).

 

[boo85]

caledonia

thanks for your response. I'm looking into getting tested for the MTHFR mutation in my own city and/or sending away for the 23 and me test.

are there any other supplements that will support the nervous system that is not B12?

I just don't think B12 agrees with me mentally. It makes me anxious and paranoid and not myself at all. It's a very scary place to be in. Have you ever heard of anyone else having this reaction? What could be causing it?

I'm scared to try any new supplements since I react to strongly to the tiniest amounts of anything.

also, instead of buying liquid B12 and using a dropper to measure out micro amounts, can I stir in a B12 tablet in hot water and let that dissolve?

 

[caledonia]

caledonia

thanks for your response. I'm looking into getting tested for the MTHFR mutation in my own city and/or sending away for the 23 and me test.

are there any other supplements that will support the nervous system that is not B12?

I just don't think B12 agrees with me mentally. It makes me anxious and paranoid and not myself at all. It's a very scary place to be in. Have you ever heard of anyone else having this reaction? What could be causing it?

I'm scared to try any new supplements since I react to strongly to the tiniest amounts of anything.

also, instead of buying liquid B12 and using a dropper to measure out micro amounts, can I stir in a B12 tablet in hot water and let that dissolve?

B12 = anxious and paranoid - sounds very much like a CBS reaction. I had something like that too - anxious and stressed from even as low as 1mcg!

You could try dissolving the tablet in water, but I would not use hot water. B12 is sensitive to heat, so that would degrade it and make it useless.

Sooooo.....don't take any more B12 for now! Get tested by 23andme so we can see what your SNPs are and advise you from there. You could also have COMT which would impact how much and what type of B12 to take. People with COMT can have mental type reactions from the wrong supps.

There are ways to get around CBS and COMT reactions, but we need to know your SNPs first. Treatment is individualized based on that.