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Severe headache/migraine after SAMe + b12

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Gavman, Jan 24, 2012.

  1. Gavman

    Gavman Senior Member

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    Hey team,

    When coupling SAMe (low dose) and b12 (jarrow or adenob12), i tend to develop a ripping headache that can last 24-36 hours. Is this kind of symptom usually an -its working- effect? Or what. I dont have any low potassium symptoms but im not sure i ever have, yet potassium does go well for me in general.

    Cheers,
    Gavin
  2. Rosebud Dairy

    Rosebud Dairy Senior Member

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    You might check out the confirmed folate deficiency thread.

    and the folate/methylation thread
  3. Freddd

    Freddd Senior Member

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    Are you taking CoQ10
  4. Gavman

    Gavman Senior Member

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    nope, should i jump in on that?
  5. Freddd

    Freddd Senior Member

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    During early portions of active b12 healing CoQ10 can cause a 50+ point jump in BP and massive headaches.

    Some people may have that from low potassium and/or low folate.
  6. Gavman

    Gavman Senior Member

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    hmm. i'll try introducing more folate then. Thanks Freddd for your timely response!
  7. greenshots

    greenshots Senior Member

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    merylg likes this.
  8. Freddd

    Freddd Senior Member

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  9. rydra_wong

    rydra_wong Guest

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    Holy shit! Now I'm scared to the bone! Who would ever expect CoQ10 to affect bp? It is listed as something that can LOWER bp, but I never found that it did so enough so's I could ever notice. Navigating through all this sounds more and more impossible.
  10. rydra_wong

    rydra_wong Guest

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    Gavin,

    Here is my take and yu need to consider this possibility: SAMe scares me because it is just 1 step away from homocysteine. Homocysteine causes not only nerve damage but blood vessel damage, which could be a source of headache (and a source of blood pressure issues). I
    personally would never take it. I take only the suppkements to generate SAMe naturally because I figure I should not generate it faster than I can clear it. So you clear it via p5p, and molybdenum, and also reduce it by (mfolate and mB12) and also by TMG. These are what I ssupplement. Well, I do not supplement molybdenum per se although it is often in multis I have taken. I was tested high in molybdenum via hair anaylsis. Molybdenum antagonizes copper absorption so care is needed all around.
  11. greenshots

    greenshots Senior Member

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    A long Yasko quote but I think it addresses many issues we've hashed around and it supports the idea for SAMe even more.

    ''If an individual has the CBS up regulation (C699T), then they will break
    down homocysteine more rapidly. This depletes intermediates in the
    methionine cycle as well as making more products from homocysteine.
    Homocysteine will be converted to cystathionine. This in turn goes to
    produce cysteine plus alpha keto glutarate and AMMONIA. What happens next
    depends in part on the level of cysteine. When there are higher doses of
    cysteine the body will then convert these intermediates to taurine.
    (Taurine can be broken down into AMMONIA by bacteria in the gut.) However
    if there are lower amounts of cysteine the body will choose to make
    glutathione. So, first of all, the amount of cysteine will help to
    determine whether we make glutathione or taurine. (J. Nutr. 133:2697-2702,
    September 2003). If we have the CBS C699T we will be creating higher
    levels of cysteine (due to enhanced breakdown of homocysteine) so we will
    almost always be generating taurine rather than glutathione. While the
    temptation may be to add glutathione (due to low glutathione levels), this
    can create problems. High levels of certain sulfur byproducts can cause
    problems in the body. The CBS up regulation is generating so many sulfur
    products that added glutathione may be a problem for these individuals. So
    a sensitivity to sulfur products and sulfur containing antibiotics may
    also be indicative of this mutation. Molybdenum is used to help to convert
    the neurotoxic sulfite to sulfate. This reaction will be heavily taxed in
    individuals with CBS C69T + + and so you will often see low levels of
    molybdenum in spite of constant supplementation. So individuals with a
    homozygous CBS C699T will often have no homocysteine, high levels of
    taurine (without supplementation) and low levels of glutathione on a urine
    amino acid test, as well as low levels of molybdenum on an essential
    element urine test.

    What may more be of greater importance is that ?when the need is for
    energy, and not for cysteine, homocysteine produced is metabolized by
    homocysteine desulfhydrase to alpha KG, NH3 and H2S.?(see series of
    articles by Stipanuk, MH). Because we are dealing with mitochondrial
    issues in most cases we are energy depleted. Methylation cycle mutations
    will compound this energy problem as SAMe is used as a methyl donor for
    carnitine and COQ 10, both important energy components of mitochondria.
    Due to the enhanced conversion of homocysteine we are constantly depleting
    intermediates of the methylation cycle. This includes SAMe (needed in this
    case for carnitine and COQ10) as well as methionine. Both methionine and
    SAMe are also useful for dealing with ammonia, however due to the CBS
    C699T we are generating more ammonia and less methionine and SAME. The
    more we supplement (which we need to do) the more ammonia we generate, a
    true catch 22.

    So AMMONIA is generated as a result of transulfuration when cystathionine
    is converted to cysteine, from taurine as well as from alpha KG. Under
    ideal conditions ammonia will be absorbed in reactions between glutamine,
    glutamate and alpha KG. However, (see slides 113 to 116 from MTHFr, Metals
    and Methylation ppt) aluminum interferes with glutamate dehydrogenase and
    mercury interferes with glutamine synthase. This impairs the pathways that
    are normally used for addressing ammonia. In addition, in some individuals
    the GAD enzyme may be impaired as a result of viral infection and
    methylation status (discussed in the autism book and in the Boston DVDs).
    This will create a possible scenario where excess alpha keto glutarate is
    being generated by breakdown of homocysteine but it cannot convert
    properly to form ie GABA. However this excess alpha KG can combine with
    the excess ammonia to form more glutamate. I have previously discussed at
    length the relationship between glutamate, excitotoxins and nerve damage.

    The ammonia problem can worsen with viral infection. So for an individual
    with the homozygous CBS it is a real catch 22. We need the SAMe and
    methionine (and Folapro and Intrinsic B12 for that matter) in order to
    have methylation so that we can silence the virus and reduce the viral
    load. However, every time we add anything that helps the cycle to flow
    properly we end up generating more homocysteine, which flows directly to
    make more ammonia and sulfur groups, and taurine. We need to address this
    part of the cycle in order to get out of the catch 22 we are in. We are
    currently evaluating RNAs that may be helpful to support healthy ammonia
    levels.

    Ammonia will be converted to urea via the urea cycle. This is an expensive
    process from the standpoint of BH4 as it uses two molecules of BH4. So the
    conversion of elevated levels of ammonia can quickly drain limited stores
    of BH4. This can then impact the levels of serotonin and dopamine. I
    believe that this is part of the reason why the combination of a CBS C699T
    + + with the A1298C homozygous mutation (which I believe impacts the
    reverse reaction through the MTHFR to generate BH4) can have such a
    devastating effect.

    You are correct that arginine is a starting point in the urea cycle.
    However, I do not believe that arginine is the rate limiting factor here.
    I think that BH4 is the rate limiting factor in most cases. Arginine can
    stimulate the growth of virus. This has been particularly well studied for
    herpes virus. So adding additional arginine may lead to increased growth
    of herpes virus and may not help the urea cycle if it is not the rate
    limiting factor.

    Arginine that is not used by the urea cycle can be used to make
    creatinine. So if we can decrease the amount of ammonia that is generated.
    Then we are using less BH4 and less arginine in the urea cycle. This will
    free up BH4 for serotonin and dopamine. It will also free up arginine for
    creatinine.

    This is all lovely in theory, but what do we actually see in practice?
    When we go to a low protein diet, we observe an increase in creatinine and
    an increase in metal excretion. This would suggest that we may be on the
    right track in addressing this problem. This is another reason to monitor
    urines carefully as it may appear as if behaviors are deteriorating and
    that a low protein diet is not working, when in fact this is a result of
    increased creatinine and metal excretion. I suspect that some of the
    behaviors that have been attributed to yeast (silly behavior following
    food) may in fact be high ammonia levels generated as a result of CBS up
    regulation. This imbalance in ammonia levels will most likely contribute
    to gut imbalances and exacerbate yeast issues.

    The good news is that the more we understand what is going on the easier
    it is to address it. We are in the process of evaluating the benefits of
    low protein diets, RNAs and the possible use of BH4 supplementation to
    address these mutations. Each day we move a little bit closer to getting
    the necessary answers to know how to address these issues.

    With love and hope,
    Dr. Amy"
  12. Gavman

    Gavman Senior Member

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    I believe i'm seeing some improvement through methylation. I have started taking 1/4 teaspoon celtic sea salt in the morning too, too much makes me want to vomit.
    Since taking methylfolate i have not had a headache, it was not regular, just occasional.
  13. rydra_wong

    rydra_wong Guest

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    Angela, just fyi, but I have two CBS polymorphisms, one homozygous, and I have problems with HIGH homocysteine. Also I have HIGH molybdenum. So I know what she says but I think theory is just theory and it is important to test your homocysteine and get a hair anlysis for trace minerals.
  14. greenshots

    greenshots Senior Member

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    You probably have several of the defects that cause high homocysteine so are overriding the CBS. There are at least 24 defects that raise homocysteine, most of which I have no clue about. But If you have the BHMT, AHCY, and MTHFR's, you'll have higher homocysteine instead of lower, even with your huge hole in the bucket. Plus, there's another CBS enzyme defect (studied in Alzheimers) that slows everything down so for all you know, you have both types of CBS defects, the upregulator and the downregulator. That's why this can't be black & white but tends to follow trends that should be watched. I've looked into the homocysteine issue in the past because my dad had Alzhemier's and I wasn't exactly thrilled about going down that road. For all I know, your ammonia levels will be normal since you have both CBS defects and Yasko doesn't test for both. She just looks at the upregulation. But to me, it might make sense to check for the urine ammonia every so often, if insurance allows it, so you'll be certain. I also don't think its about not having any protein at all because that's not practical. But knowing its about balance and watching your carb to protein ratio & the types of carbs you eat (veggies & fruits instead of starches) as well as leaner, healthier proteins in smaller portions. I've never heard Yasko say no sulfur or no protein for those of us with the CBS or SUOX but I sure see many of her followers who take it that way and who won't have any of either. People seem to always take things too far in life. Its more about limiting what you reasonably can and taking in what's better for us.

    Angela
  15. therron

    therron

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    Hi Rydra,
    I just wanted to confirm the rise in blood pressure when taking CoQ10 (ubiquinol). I had the same thing happen. Yes, I am in the early stages of healing as Freddd mentioned. Frustrating trying to adjust and track down clues. I'm set to see the NP that greenshots recommended. She has knowledge of methylation and MTHFR, and seemingly loves to solve mysterious health issues. I'll keep you posted.'
  16. Freddd

    Freddd Senior Member

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    Hi Therron,

    In the 20 years I was trying to get diagnosed and healed at an out of pocket cost of about $10,000 per year, I visited with approximately 100 practitioners of many varieties, all with their pet theories and therapies, and all, without exception, 100% wrong. In my case it wasn't possible to get the treatment right, but they didn't even get the anaylsis right. The same theories are all still around. I think we are chasing down the clues and understanding them. It may not benefit you tpo chasing off in other directions with other theories until you really try what you are just starting. If the other theories convince you to change away from what is effective and what it takes to work, you will be in the same boat next year as this year. If things are starting to work or at least be understood what is keeping you from healing, you might find it effective to stick with it for a while. Running after too many theories at the same time doesn't work.

    The active b12 protocol is a process, not just a list of supplements. It's a process brought about by a different set of assumptions. It's a process that can be applied to SMP or a hybrid because it is independent of many of the specifics. It's about identifying certain situations that come up while healing which need to be taken care of. It's about seeing the hints towards heeling and following those, to removing or changing the impediments to healing.

    Frustrating trying to adjust and track down clues.

    However, there are a number of hints we get. There is a drop in potassium on approximately day 3 after starting the b12/folate component or adding an item later. So it is a prediction, that if the protocol works for starting methylation, potassium will drop and signify that cell formation is occurring on a stepped up basis. A certain percentage have enough potassium that they don't have this come up. In any case if certain low potassium symptoms occur, then a person needs to get more potassium into their bodies. This is time related. At some point when the increased methylation puts pressure on the methylfolate adequacy in the body, a person may discover a paradoxical or induced folate deficiency. Each more obvious layer we understand and remove reveals another more suble layer underneath. I found that adb12 needed to come before the D-ribose would be as much use, for instance. I found that a lack of zinc can hild things up. I found item after item, pragmatically determined after trying many variations. Based on journal research I decided to try l-carnitine fumarate rather than the more popular acetyl l-carnitine. I then tried 6 different vartieties as long as I was hypersensitive, and only one worked very noticably. It may be different for others, I don't know. But the only way anybody can optimize for themselves is the trial. I'm always doing a trial. One one learns what healing is like as opposed to low potassium or low folate or low zinc or low mb12 or low adb12 one can aim for that, taking each hint in that direction. And trying items in the wrong order may not be effective. Process ABBC has to be done before HYYT works. So I came back and tried lots of things that theories from various places said "ought" to work. Sometimes they did, and sometimes they didn't. Sometimes it was after i added 3 or 4 things that the trialed substance often worked. I found that these things that were going to solve my problems tended to start working quickly.

    Everybody has roadblock after roadblock. I detailed on the basics the reasons that b12/folate defieicnies don't work. Mostly they were concerned with the b12 specific things such as brand and form. Some of them hit almost everybody, induced low potassium and low or induced low folate. Then some people, like you and me, hit elevated blood pressure from CoQ10. That is more rare. More often a person hits a plateau. Then it is finding the new most limiting factor, often induced by the healing itself or reaching the limits of something they are taking. Mostly healing slows down or stops. Low potassium and rarely CoQ10 BP increase are things that appear potentially dangerous and need to be recognized. Then things that are unpleasant need to be corrected and things that merely stop healing then are corrected. So it isn't just a matter of doses and ratios. It is an interactive process.
  17. rydra_wong

    rydra_wong Guest

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  18. rydra_wong

    rydra_wong Guest

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  19. greenshots

    greenshots Senior Member

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    We'll have to agree to disagree on this one since to me, based on this logic we shouldn't take methyl B 12 either since, if memory serves me right, I think the MTR also uses this B12 to make homocysteine. So many things lead to high homocysteine that it seems more logical to use our working knowledge of this issue rather than also considering that something is one step away from a bad compound so "what if?" because we could do that all day long. For example, we already know that if you have the BHMT, you'll have high levels from just not converting the homocysteine. If you have a family history of alzheimer's then you probably have the slow CBS defect that keeps homocysteine all cooped up inside the pathway. With the MTHFR A1298C defect, you won't produce nearly as much SAMe, which is needed for almost 420 known methylation activties (that we know of so far). If you have the MTHFR C677t defect, you can't use folate well and will have high homocysteine levels, etc. Then there's all the added dietary folate adding to the problem
    further with so many of us (from processed foods packed with it). There are many more
    defects that add to the homocysteine burden but there's also our dietary intake, from meats, or not getting enough supporting nutrients from the diet. Then there's lack of
    exercise, smoking, and the list goes on and on. I wouldn't take away such an important
    methylation factor out of the picture based on that reasoning at all & really feel you'd be
    doing yourself a disservice on that one.

    It also really doesn't follow that if you don't make it thru proper channels that you can't get rid of it because its recycled and reused in many ways as well and its emptied through
    transsulfuration (or in our case, possibly dumped thru the CBS too fast). In whatever study
    you look at on this pathway (Dr. James, Deth, Vank, etc) we are always low in SAMe with
    the low SAH/SAM ratio's to show for it so its pretty clear we need it. Unless you are COMT +/+ and VDR Taq -/-, you should be able to tolerate SAMe well. For those who can't (such as overmethylators) I think Methionine is the better choice but with hundreds of jobs all over the body, it makes sense to support SAMe when you can tolerate it.


    QUOTE=rydra_wong;240621]
  20. greenshots

    greenshots Senior Member

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    Hi Freddd,

    I think many of us can commiserate (or should be able to empathize) with your life long quest in searching for answers and just coming up empty. I've watched the "best" specialists botch cases for decades simply because they were too tired or burned out to care anymore so I'm pretty sure your average primary care doctor is not likely to figure out any tougher cases like this. I agree that pursuing the current treatment makes sense but how can you be sure that this doc will not encourage that? It doesn't seem to conflict with most methylation pathway treatment in general so I don't see how its mutually exclusive.

    But also, everyone is so different that it really never hurts to have someone well versed in this pathway that can guide you based on your personal genetic issues. Manytimes, just having the input leads to all sorts of ideas and sorting things out. I like that she's seen and figured out so many disease processes in both alternative and allopathic medicine and understands the genetics. She's the only one, out of probably 40 doctors, who found a blatant mitochondrial disorder in my neighbor's son(the family practice doctor) since she didn't just assume it was methylation or heavy metals or muscular dystrophy, etc, because she doesn't take the easy way out.

    I felt the same way that you did until I saw her but in all honesty, I was amazed at her committment. Especially when I found out she's so booked because she takes the entire 1-2 hr apt time after she sees you just to think it over more and do a little research while its fresh in her mind instead of doing what everyone else does, crams in two more people into that spot to make more money. Then she takes her weekends to do more of that. It takes someone who is truly interested in figuring people out because they enjoy what they do. Her office assistants are the most devoted people I've ever seen for this reason. Sure, we all want that magic cure or that genius doctor to magically figure it all out instantaneously, maybe something like House MD but hopefully with less A$$ to go along with it. But we've also seen what its really like out there so when you get someone who truly cares about how things turn out for you or your child, its the most refreshing thing you can imagine. I missed feeling that way as a newer nurse so many years ago and she reminded me about what was most important.

    I don't think Therron's saying she expects an instant cure or even wants to stop her active folate protocol as much as she wants a medical provider who actually understands this whole process while weaving these concepts together with other health disorders in order to problem solve or fine tune stuff. Nothing beats having a doc who can do that, especially when she can order all the necessary tests and even prescribe what my family needs on ocassion. And where she's not offering any instant cures (so is definitely human) she's also capable of doing all of that and getting to the bigger picture. Sometimes, thats all you need to get the rest of the way. Maybe its just another way of looking at it.

    Angela



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