Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Pins and needles / twitching

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by craigywatt, Jun 7, 2018.

  1. craigywatt

    craigywatt

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    Hi guys,

    Newbie here so be gentle :)

    I'v had 'CFS' for almost 3 years now so I'm well accustomed to bouncing from one idea and supplement to the next. This year I'v been taking Methylfolate and B12 - and I have had some success. I'v been slowly trying to raise my dose, however a few days ago I had an episode where I had bad pins and needles in my legs, feet, hands, arms etc, and some major twitchiness. Eventually I had to get out of bed and somehow I managed to drink 7 pints of water - which is strange as I'd drank plenty during the day.

    The pins and needles has calmed down quite a bit, but I'm still as twitchy as hell. I have stopped the folate and b12 since this episode.

    Does anyone have any ideas what may be causing this? I had been taking 2x1000mcg Methylfolate & 2x6000mcg Sublingual b12 daily, along with a full B-Vitamin complex and quite a large other regime of pills - I do feel like this episode is likely related to the b12/folate though as that's the only thing that has changed recently.

    Apologies if this covered elsewhere - I'v tried to read up on this but there's just so much information and the vast majority of it goes straight over my head :confused:
     
  2. Runner5

    Runner5 Senior Member

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    PNW
    Do you have any blood sugar issues? Have you checked it lately?
     
  3. Eastman

    Eastman Senior Member

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    @craigywatt

    Pins and needles and twitchiness are sometimes attributed to magnesium and potassium deficiencies. The hormone aldosterone increases the excretion of both minerals. There is evidence that methylation supplements increase aldosterone's effects, so deficiencies in these two minerals are possibilities after starting methylation supplementation.

    Pins and needles could also be a sign of nerve damage. B12 is important for nerve health, but so are B1 and B6.

    Some PR members report that B1 supplementation improves problems that followed methylation treatment, suggesting B1 deficiencies induced by the latter. Incidentally, B1 excretion also appears to be increased by aldosterone.

    Methylation increases the rate of transulfuration and the metabolism of some neurotransmitters. B6 is involved in these processes and may conceivably get depleted from increased methylation.
     
    Mary likes this.
  4. Neunistiva

    Neunistiva Senior Member

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    I have pins and needles and twitches that developed into far more severe neurological problems. I described them in this thread.

    My neurologist told me the twitches are called myoclonus. For me they start small, just one random muscle occasionally twitching, but if I don't take my medication they develop into a whole body jerks with my legs and arms uncontrollably kicking around.

    I am not trying to scare you, though, I had those twitches for 8 years before they developed into something this severe.

    My blood work is fine, I am not deficient in anything, but I am too severely ill to go to the hospital and have EEG and MRI done.

    POTS makes them worse, but is not the only thing that triggers them. Looking at screens, hearing music also does. Sometimes I don't know what the trigger is.

    I don't have anything other than ME/CFS diagnosed.
     
  5. notmyself

    notmyself Senior Member

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    magnesium completelly eliminate twitching for me..i take oratate form
     
    Mary likes this.
  6. Neunistiva

    Neunistiva Senior Member

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    How much do you take per day? What are your serum levels of magnesium?

    I took 400mg per day and my serum levels were normal. It didn't do anything for me.
     
  7. notmyself

    notmyself Senior Member

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    my serum levels were normal..but magnesium is mostly found in cells so the serum test doesn t have much meaning in my opinion..i take 500mg at night..
     
  8. Mary

    Mary Forum Support Assistant

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    Your potassium might have tanked. Many people develop low potassium after starting B12 and folate. It's related to refeeding syndrome (see here) As our cells start to divide more rapidly and do what they are supposed to do after starting the B12 and/or folate, they use more potassium, thus inducing a functional deficiency. An easy way to find out if potassium would help is to drink several glasses of low-sodium V8 which is high in potassium (higher than regular V8). People often start to feel better within a few hours, if low potassium is the issue.

    I get twitches and spasms in my feet and lower legs when my potassium is low. I have to take extra potassium every day. Low potassium usually causes fatigue for me as well. Some people develop cardiac symptoms - arrhythmia, palpitations, though I didn't.

    People with ME/CFS can actually have low intracellular potassium despite normal blood work - I did. See here for more info on this.

    Magnesium might help too.
     
  9. craigywatt

    craigywatt

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    I'v had repeated blood sugar issues - my ill health mainly started with a monumental bout of hypoglyceamia the morning after a bachelor party (too much alcohol previous day, probably ate mainly carbs). That one was scary as hell.

    Since then I'v had hypoglycemia on and off for about 3 years. (Note: Unproven Hypoglycemia, Endocrinoligist couldn't trigger it when he kept me in hospital without food)
     
    Runner5 likes this.
  10. craigywatt

    craigywatt

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    Thank you for the detailed reply.
    Since I posted, I'v eased off the b6 and b12 supplements, and increased my MG/CA/Potassium a bit - and my nervous system has improved (not perfect but not crazy like before).

    Would my regular B-complex vitamin not be enough B1 in this instance?
     
  11. craigywatt

    craigywatt

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    That's a very informative post - thank you so much.

    I'll keep you all posted as I go. <3
     
    Mary likes this.
  12. Eastman

    Eastman Senior Member

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    It is difficult to say how much B1 you would need. Assuming that you are indeed deficient, rectifying it with just the B1 from a B-complex might take some time. If I remember correctly, most of the members who reported improvements from B1 were taking several hundred mg of it daily. Hospitals also usually give several hundred mg by IV when B1 deficiency is suspected.

    It does appear, though, that electrolyte supplementation may be doing the trick for you.

    You may want to note that B1 appears to have a role in maintaining proper electrolyte balance. Several members were able to reduce their potassium dosages after increasing their B1 supplementation (in fact, one of them posted just below the post I linked to, another in this thread).

    If you're looking up B1, note that thiamine, benfotiamine, allithiamine, lipothiamine, fursultiamine and sulbutiamine are all different forms/names of vitamin B1.
     
  13. Mary

    Mary Forum Support Assistant

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    @craigywatt - member Caledonia has put together a good compendium of information re methylation here which can be very helpful too.

    Also, if you haven't done so already, it would be good to take a look at some of member Freddd's posts such as this - I think he is our resident expert on all things B12 and folate, and he is the one who first made me (and I think most of us here) aware of the potential for hypokalemia (low potassium) with methylation. I could not have continued taking folate, which was helping me so much, without knowing about the issue of low potassium,. It (low potassium) wiped me out so badly, I would have had to stop the folate - but thanks to Freddd I had read about the issue of low potassium and so was able to raise my potassium levels and the horrible fatigue went away.
     
  14. Mary

    Mary Forum Support Assistant

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    B1 is an amazing vitamin, it has helped my energy noticeably. However, when I first took it, it caused hypophosphatemia for me -low phosphate - which caused severe fatigue similar to low potassium but no twitching. And because I'd read about refeeding syndrome, I theorized it might be low phosphate, and drinking a lot of kefir proved me right.

    Recently I increased my B1 by 50% (it's a long story why) so I'm now taking 450 mg. benfotiamine, but interestingly, that seems to have increased my need for potassium, which has more than doubled since I started the extra B1. Overall I feel a bit better so I don't mind taking the extra potassium, but am wondering if it will ever settle back down. I was taking around 800 mg potassium gluconate daily in divided doses and now am probably at around 2000 mg, in divided doses - that's important, not to take a huge amount all at once. Also am drinking low-sodium V8.
     
  15. Eastman

    Eastman Senior Member

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    I should probably have mentioned that while taking B1 can reduce potassium losses through the kidneys and thus reduce potassium need, it can also trigger refeeding syndrome which would increase potassium need.

    @Mary, considering that you've been taking B1 for a while, I'm surprised that you would be getting refeeding syndrome from it. But since you're feeling better from it, perhaps you still had a functional B1 deficiency.
     
  16. Mary

    Mary Forum Support Assistant

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    You could be right. It happened when I increased the B1. I was pretty stable potassium-wise for a long time, though I have had to take supplemental potassium every day since I first started methylfolate in 2010. But I found that I had had symptoms of low potassium even before I started the methylfolate, only I never knew what it was until then. I had just assumed it was another crappy mysterious ME/CFS fatigue. You may have read this post by Richvank in which he explains why people with ME/CFS can have normal potassium on blood work but low intracellular potassium. And I'm one of the people who predominantly has fatigue - I don't have muscle pain except when I'm crashed, or low in B1, or just acidic for some reason or other ...
     

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