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How knocked out should I be by starting methyl-B12?

Calathea

Senior Member
Messages
1,261
This may be muddled as I've been absolutely zonked out all day, mostly asleep in fact, since I took a couple of painkillers 9 hours ago.

I don't really understand how the methylation protocol works or what it's about because I haven't been able to find any explanation of it that's short and simple enough to make sense to me. I can't afford testing and can only afford minimal supplements. I gathered from this forum that methyl-B12 was a good thing to try, so I ordered some Jarrow 1mg. I started on 1/4 tablet a few weeks ago, then bumped it up to 1/2 tablet after a week, then up to 1 tablet after another week, then the reaction hit. Fatigue far worse, sleeping more than usual, achier than usual, mild constipation and I think it's made my dry eyes flare up as well. I hastily returned to 1/2 tablet, dissolved properly under the tongue in the morning. This was two weeks ago.

I was stupidly doing this at the same time as lowering gabapentin, but they've been lowering the gabapentin for months now (I'd been up to 3000mg) and it wasn't doing anything more dramatic than insomnia, so I'd sort of forgotten to take it into consideration as something that could make matters worse. I got to 900mg a fortnight ago, actually it might be 3 weeks (I'll check later), and have been staying on that as we want to see how I do on that dose for pain. By this point I'd been taking valerian in the evening for sleep, something I've taken safely in the past, but I've now reduced that as my ability to get to sleep has been improving again. I'm sleeping for much longer than usual now, though, 11-12 hours I think, and it's getting to the point where I'm seriously considering having my support workers come later than their usual 12pm until this changes. Before this hit, I was getting up at 8-9 am most of the time.

I should also mention that I went to a family wedding in mid-November, and haven't quite shaken the effects of that off just yet. There's been a certain amount of stress in the household as a result of my partner's father being seriously ill this winter. Also I have gallstones and am due to see a surgeon about probably removing my gallbladder in a month. I haven't had a gallstone attack in a while, I've been controlling it through low-fat diet. Oh yes, and I've been (deliberately) losing weight at a nice slow pace since April, but I've actually been feeling a bit better on that, mainly showing up by being able to have showers far more consistently in the morning. The weight loss is very nearly over, and I've actually bumped up my calories a bit for the time being in order to reduce any stress on my system. This may sound like a lot, but round here it's fairly normal, there's always something going on!

Anyway, right now I seem to be completely bushed. My hormones have gone crazy this cycle (I have PMDD, it's one reason why I needed to lose weight), with very nasty (and somewhat odd) breast pain and migraine before my period, though no anxiety this cycle. My basal temps have been more erratic than usual, which as I recall reflects progesterone levels. I've been getting pain coming from what feels like a point in my left shoulder, from a muscle I think, and it's been radiating up and about quite a lot as well as setting off the migraine. The migraine's gone but the shoulder's still hurting quite a lot and I haven't been able to improve it despite careful stretching and so forth. If the pain was a bit to the left, I'd think it was calcific tendinitis as I do tend to get that flaring up from time to time, but it's in the wrong position. So this morning I woke up, the shoulder was really nasty, and I took two 30/500 co-codamol and one 2mg valium, which is what I use for severe muscle pain, though not too often. Thankfully it actually worked (it hasn't been working as well this week), but I fell asleep again shortly afterwards and have been asleep for most of the day and very dozy for the rest. Admittedly one reason why I don't use those meds too often is because they can be unpredictable in this way, but it's really rare for them to knock me out this much.

I realise I'm throwing a lot at you, but can anyone advise me how the B12 may be playing into this? I also ordered some Solgar Metafolin which arrived this morning, but I have no idea whether or not I should take that to help whatever is going on, or taper down the B12 and postpone trying this protocol until I have less going on. I recently noticed Fredd's posts about avoiding folic acid, and did wonder if that's a factor. I've been taking a multivitamin with folic acid in it for years, I've never actually noticed it making any difference whatsoever to my health. I also started the Country Life Co-Enzyme B Complex, which includes folic acid, hmm, about 6 weeks ago I think (can check that later too).

I'd be really grateful for any advice!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
This may be muddled as I've been absolutely zonked out all day, mostly asleep in fact, since I took a couple of painkillers 9 hours ago.

I don't really understand how the methylation protocol works or what it's about because I haven't been able to find any explanation of it that's short and simple enough to make sense to me. I can't afford testing and can only afford minimal supplements. I gathered from this forum that methyl-B12 was a good thing to try, so I ordered some Jarrow 1mg. I started on 1/4 tablet a few weeks ago, then bumped it up to 1/2 tablet after a week, then up to 1 tablet after another week, then the reaction hit. Fatigue far worse, sleeping more than usual, achier than usual, mild constipation and I think it's made my dry eyes flare up as well. I hastily returned to 1/2 tablet, dissolved properly under the tongue in the morning. This was two weeks ago.

I was stupidly doing this at the same time as lowering gabapentin, but they've been lowering the gabapentin for months now (I'd been up to 3000mg) and it wasn't doing anything more dramatic than insomnia, so I'd sort of forgotten to take it into consideration as something that could make matters worse. I got to 900mg a fortnight ago, actually it might be 3 weeks (I'll check later), and have been staying on that as we want to see how I do on that dose for pain. By this point I'd been taking valerian in the evening for sleep, something I've taken safely in the past, but I've now reduced that as my ability to get to sleep has been improving again. I'm sleeping for much longer than usual now, though, 11-12 hours I think, and it's getting to the point where I'm seriously considering having my support workers come later than their usual 12pm until this changes. Before this hit, I was getting up at 8-9 am most of the time.

I should also mention that I went to a family wedding in mid-November, and haven't quite shaken the effects of that off just yet. There's been a certain amount of stress in the household as a result of my partner's father being seriously ill this winter. Also I have gallstones and am due to see a surgeon about probably removing my gallbladder in a month. I haven't had a gallstone attack in a while, I've been controlling it through low-fat diet. Oh yes, and I've been (deliberately) losing weight at a nice slow pace since April, but I've actually been feeling a bit better on that, mainly showing up by being able to have showers far more consistently in the morning. The weight loss is very nearly over, and I've actually bumped up my calories a bit for the time being in order to reduce any stress on my system. This may sound like a lot, but round here it's fairly normal, there's always something going on!

Anyway, right now I seem to be completely bushed. My hormones have gone crazy this cycle (I have PMDD, it's one reason why I needed to lose weight), with very nasty (and somewhat odd) breast pain and migraine before my period, though no anxiety this cycle. My basal temps have been more erratic than usual, which as I recall reflects progesterone levels. I've been getting pain coming from what feels like a point in my left shoulder, from a muscle I think, and it's been radiating up and about quite a lot as well as setting off the migraine. The migraine's gone but the shoulder's still hurting quite a lot and I haven't been able to improve it despite careful stretching and so forth. If the pain was a bit to the left, I'd think it was calcific tendinitis as I do tend to get that flaring up from time to time, but it's in the wrong position. So this morning I woke up, the shoulder was really nasty, and I took two 30/500 co-codamol and one 2mg valium, which is what I use for severe muscle pain, though not too often. Thankfully it actually worked (it hasn't been working as well this week), but I fell asleep again shortly afterwards and have been asleep for most of the day and very dozy for the rest. Admittedly one reason why I don't use those meds too often is because they can be unpredictable in this way, but it's really rare for them to knock me out this much.

I realise I'm throwing a lot at you, but can anyone advise me how the B12 may be playing into this? I also ordered some Solgar Metafolin which arrived this morning, but I have no idea whether or not I should take that to help whatever is going on, or taper down the B12 and postpone trying this protocol until I have less going on. I recently noticed Fredd's posts about avoiding folic acid, and did wonder if that's a factor. I've been taking a multivitamin with folic acid in it for years, I've never actually noticed it making any difference whatsoever to my health. I also started the Country Life Co-Enzyme B Complex, which includes folic acid, hmm, about 6 weeks ago I think (can check that later too).

I'd be really grateful for any advice!

Hi Calathea,

Consider that one of the things that mb12 does is stimulate the output melatonin. When that happens determines when the the sleepiness hits. At first mine hit in mid afternoon and then progressed to later in the evening. It was the first step in restoring high quality sleep. Also, the cofactors are needed. Adb12 could help with the energuy an awful lot. B-complex , magnesium, ,etafolin etc are all needed. Potassium can cause probles if not supplemented. I often have to take as much as 1800mg a day to keep out of trouble. Lack or patassium can casue all sorts of problemsd. You need to correct the lack of cofactors, not cut the mb12. I would get rid of all the folic acid. Later after everything is working right you can try adding it back in. It might take several weeks to build up to a problem amount after restart. First you need to find what works, then get rid of it. The best assumption for getting therough this is to be sure that the thibgs the mb12 is doing is essential and to your benefit regardless of how it feels and spot the problems; ie folic acid, lack of metafolin, cofactors like adb12 and l-carnitine fumarate.
 

Calathea

Senior Member
Messages
1,261
Thanks so much for responding!

I'd be surprised if my melatonin levels are low, considering that I have been practising darkness therapy for years and am not exposed to any blue light from 9.30pm until 8ish the next morning. Is melatonin one of those things where you can always get more of it? It's not just sleepiness, though, it's the type of fatigue I'm feeling, which I haven't experienced before when I've been getting better melatonin production. My sleep quality hasn't been any better than usual that I've noticed, I've just been sleeping longer. The main time my sleep quality improved was when I started the darkness therapy a few years ago, big time, although the gabapentin gives it a bit of a boost. I've been figuring that if I was sleeping longer, I probably just needed the sleep, but for all I know it's not actually a good sign. At least all this sleeping and dozing is keeping me off the computer more, which is good as I'm trying to rest my hands as much as possible due to RSI.

Current supplements (knew there was something I'd forgotten!): Deva one-a-day multivitamin, calcium/vitamin D on prescription, 100mg co-Q10, mix of veggie alternatives to fish oil (echium, algae, borage, and just added flaxseed in the hope it would help the dry eyes at a lower price than the others), ginger as my body temperature dropped when I started dieting (forgot to mention, that's been getting worse over the last week or so as well, I doubled the ginger from the other day), zinc gluconate (cheapie brand, found it in the cupboard and figured I may as well use it up), Country Life co-enzymated B complex, 50mg P-5-P (meant to be good for RSI), and an electrolyte mix I make up from low-sodium salt (i.e. sodium and potassium), magnesium citrate, magnesium ascorbate, d-ribose and acetyl l-carnitine. Sometimes I add in magnesium malate, usually depending on what the IBS is up to. Right now I get 2,000mg potassium on top of what I get through my diet (which is vegan and nicely wholefoodsy, by the way). So I'm already on everything you recommend except the Metafolin (which I have waiting) and the ad-B12. Although the B complex I take also has 250mcg of B12 per capsule in the form of dibencozide and methyl-B12, listed in that order which presumably means that it has more of the former.

So you're saying that one type of B12 causes sleepiness and another gives energy? Rich, I don't recall your protocol recommending using both types together (though I could be wrong): what are the different schools of thought here, in a very small nutshell?

Anyway, I've been taking one of the B complex, and being a daftie I got rather a big bottle of it so I'm relatively keen on using it up if possible. Could I take more of that to fill in the ad-B12, or are we going to run into problems with also increasing the folic acid which is in there? How do I know if I'm one of the people who does badly on folic acid, anyway? Being broke, I'd rather not throw out those pricey B complex and all my multivitamins and replace them all unless I really have to.

Meanwhile, what should I do with the methyl-B12, keep on with the same dose? Change the time when I take it? And should I start the Metafolin now, and if so, any suggestions as to dosage and timing?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks so much for responding!

I'd be surprised if my melatonin levels are low, considering that I have been practising darkness therapy for years and am not exposed to any blue light from 9.30pm until 8ish the next morning. Is melatonin one of those things where you can always get more of it? It's not just sleepiness, though, it's the type of fatigue I'm feeling, which I haven't experienced before when I've been getting better melatonin production. My sleep quality hasn't been any better than usual that I've noticed, I've just been sleeping longer. The main time my sleep quality improved was when I started the darkness therapy a few years ago, big time, although the gabapentin gives it a bit of a boost. I've been figuring that if I was sleeping longer, I probably just needed the sleep, but for all I know it's not actually a good sign. At least all this sleeping and dozing is keeping me off the computer more, which is good as I'm trying to rest my hands as much as possible due to RSI.

Current supplements (knew there was something I'd forgotten!): Deva one-a-day multivitamin, calcium/vitamin D on prescription, 100mg co-Q10, mix of veggie alternatives to fish oil (echium, algae, borage, and just added flaxseed in the hope it would help the dry eyes at a lower price than the others), ginger as my body temperature dropped when I started dieting (forgot to mention, that's been getting worse over the last week or so as well, I doubled the ginger from the other day), zinc gluconate (cheapie brand, found it in the cupboard and figured I may as well use it up), Country Life co-enzymated B complex, 50mg P-5-P (meant to be good for RSI), and an electrolyte mix I make up from low-sodium salt (i.e. sodium and potassium), magnesium citrate, magnesium ascorbate, d-ribose and acetyl l-carnitine. Sometimes I add in magnesium malate, usually depending on what the IBS is up to. Right now I get 2,000mg potassium on top of what I get through my diet (which is vegan and nicely wholefoodsy, by the way). So I'm already on everything you recommend except the Metafolin (which I have waiting) and the ad-B12. Although the B complex I take also has 250mcg of B12 per capsule in the form of dibencozide and methyl-B12, listed in that order which presumably means that it has more of the former.

So you're saying that one type of B12 causes sleepiness and another gives energy? Rich, I don't recall your protocol recommending using both types together (though I could be wrong): what are the different schools of thought here, in a very small nutshell?

Anyway, I've been taking one of the B complex, and being a daftie I got rather a big bottle of it so I'm relatively keen on using it up if possible. Could I take more of that to fill in the ad-B12, or are we going to run into problems with also increasing the folic acid which is in there? How do I know if I'm one of the people who does badly on folic acid, anyway? Being broke, I'd rather not throw out those pricey B complex and all my multivitamins and replace them all unless I really have to.

Meanwhile, what should I do with the methyl-B12, keep on with the same dose? Change the time when I take it? And should I start the Metafolin now, and if so, any suggestions as to dosage and timing?

Hi Calathea,

The sleepiness with mb12 is one of the flags along the way to healing. It has always been a good sign in those having it occur. There is something called "sleep phase disorder" which affects the timing of the metatonin formation with mb12. The suggestion that seems to work well is the one you made, change the timing on the mb12 so that the drowsiness comes at bedtime. Folic acid might be a problem, or not, a Metafolin ONLY trial being the only way to know. Adb12 is the form that is active in the mitochondria and generates the body's energy in the form of ATP. I consider that the two active b12 forms are not used by Rich to be the major flaw of the approach he uses. Please undersrtand that we agree on 99% of all this. If a suitable project were to come my way I would be pleased to invite Rich to participate.

Right now I consider the Source Naturals Dibencozide to be an adequate adb12 without folic acid. A NEUROLOGICAL dose of 50mg in a single dose made to last as long as possible may be very enlightening. Same thing with methylb12. Such doses need to be at least tried considering that CFS/FMS is KNOWN to have the restricted cobalamin in the cerebral spinal fluid.

Taking the CNS/CSF penetrating 50mg doses might change everything for you as there is a centrally mediated "tiredness" in CFS/FMS.
 

Calathea

Senior Member
Messages
1,261
Dear Freddd,

Oh dear, I must have explained myself wrong. I'm not experiencing a sleep phase disorder as a result of the M-B12. I already have two of those, Delayed Sleep Phase Disorder which then turned into Non-24 Sleep-Wake Cycle, and I have both under control through use of darkness therapy, as has been the case for about three years now. When I say that I'm now waking up at midday instead of 8-9am, I don't mean that I'm falling asleep several hours later, as in DSPS. I mean that I'm falling asleep at the same time as usual, but that I'm sleeping for longer. My bedtime hasn't changed at all, thankfully. Sometimes I'm having siestas, but that's normal for me. Apart from the longer duration of sleep at night, I really am talking about added fatigue rather than drowsiness. I'm taking the M-B12 when I wake up in the morning at the moment.

With regard to the folic acid/Metafolin, does that mean I should just stop taking anything with folic acid in it for the time being and start on the Metafolin? 1/4 tablets to begin with, isn't it? Is there any particular time of day when I should take the Metafolin?

Am I likely to have any problems resulting from stopping the multivitamin and the B complex, which I'd have to do as both contain folic acid? Am I better off adding in the Metafolin but keeping on with the multi and the B complex until I can afford to try versions which don't have folic acid? To be honest, I really can't afford to do this for a few months, and having just seen the cost of dibencozide, I can't afford that either, especially since it's 10mg and you recommended 50mg.

I'm a bit lost by the "neurological dose" thing, and I realise that this is what I will get for asking you to simplify something very complex! Could you explain more about this? Do you mean that I'd just take it as a one-off?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Dear Freddd,

Oh dear, I must have explained myself wrong. I'm not experiencing a sleep phase disorder as a result of the M-B12. I already have two of those, Delayed Sleep Phase Disorder which then turned into Non-24 Sleep-Wake Cycle, and I have both under control through use of darkness therapy, as has been the case for about three years now. When I say that I'm now waking up at midday instead of 8-9am, I don't mean that I'm falling asleep several hours later, as in DSPS. I mean that I'm falling asleep at the same time as usual, but that I'm sleeping for longer. My bedtime hasn't changed at all, thankfully. Sometimes I'm having siestas, but that's normal for me. Apart from the longer duration of sleep at night, I really am talking about added fatigue rather than drowsiness. I'm taking the M-B12 when I wake up in the morning at the moment.

With regard to the folic acid/Metafolin, does that mean I should just stop taking anything with folic acid in it for the time being and start on the Metafolin? 1/4 tablets to begin with, isn't it? Is there any particular time of day when I should take the Metafolin?

Am I likely to have any problems resulting from stopping the multivitamin and the B complex, which I'd have to do as both contain folic acid? Am I better off adding in the Metafolin but keeping on with the multi and the B complex until I can afford to try versions which don't have folic acid? To be honest, I really can't afford to do this for a few months, and having just seen the cost of dibencozide, I can't afford that either, especially since it's 10mg and you recommended 50mg.

I'm a bit lost by the "neurological dose" thing, and I realise that this is what I will get for asking you to simplify something very complex! Could you explain more about this? Do you mean that I'd just take it as a one-off?

Hi Calathea,

Please let me clarify on the dibencozide. 50mg is generally a one time only challange to see if a person has a CNS deficiency after the person has been taking the dibencozid at body levels for a month or so. 1/4 of the 10mg table every 2-3 days ought to be enough to reach and maintain body equilibrium. I do take 50mg at once, but only once every week or two. It is enough for me to maintaine adb12 saturation and is not noticable in any way and penertates the CNS because of the large dose occasionally. Not everybody finds that to be the case but one of those $42 bottle of 120 can last me a year.

You could try the Metafolin by taking 2 of them 30 minutes before the multivitamin and b-complex. I found that to be reasonably effective and probably would have been entirely satisfactory if I didn't also have the veggie folate problem. Metafolin doesn't have any asskicking startup unless the mb12 is being supressed by the folic acid. About 5% of people find that Metafolin activates the mb12. According to the Deplin study 7.5mg and 15mg have no side effects different from placebo.

On the other hand folic acid and/or folinic acid can have brutal side effects if they cause deficiency of sufficient severity.
 

TheMoonIsBlue

Senior Member
Messages
442
Hello!

Have you been able to identify any predictors about why some people may get hypersomolance (I think that is the word, "extreme sleepyness") and sleeping too much on Metafolin vs. people who get Insomnia when they take Metafolin supplements? Other than, I suppose, a previous history of insomnia.

I wonder if with Metafolin it had anything to due with Serotonin. One person reported being able to discontinue their SSRI when taking Metafolin, and they asssumed it was because it was helping them produce their own serotonin now. This is just a thought.

There have been a few people who say they "can not sleep at all" on Metafolin, where as other people report "never sleeping so great" with it. Strange!

If some people "just" have a folic acid deficiency they need to correct, and don't have any of the MTHFR mutations processing folic acid, could these people just need to take a lower dose of Metafolin? Maybe just 400mcg the RDA?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Hello!

Have you been able to identify any predictors about why some people may get hypersomolance (I think that is the word, "extreme sleepyness") and sleeping too much on Metafolin vs. people who get Insomnia when they take Metafolin supplements? Other than, I suppose, a previous history of insomnia.

I wonder if with Metafolin it had anything to due with Serotonin. One person reported being able to discontinue their SSRI when taking Metafolin, and they asssumed it was because it was helping them produce their own serotonin now. This is just a thought.

There have been a few people who say they "can not sleep at all" on Metafolin, where as other people report "never sleeping so great" with it. Strange!

If some people "just" have a folic acid deficiency they need to correct, and don't have any of the MTHFR mutations processing folic acid, could these people just need to take a lower dose of Metafolin? Maybe just 400mcg the RDA?

Hi TheMoonIsBlue,

I think that it has more to do with methylb12 rather than metafolin, at least in my experience to date. There appears to be a tri-modality. There is the "hyper" response to mb12, say about 80%. Then there is hypersomolance to some degree but no hyper, maybe 5-10%. Then there is the combination of hyper most of the time with hypersomolance onset at some time during the day or evening accounting for maybe 10-15%. These are just off the top of my head guestimates in reviewing my memory. It isn't something I paid much attention to. Metafolin might be connected too just becasue these two often work together.

With mb12 we have something that affects melatonin, thyroid for those in the active phase of Hashimotto's Thyroiditis, serotonin, and no doubt other things. It's deficiency causes half a dozen different sleep disorders.

Maybe just 400mcg the RDA?

The folate RDA is a complete fiction based on keeping folate so low that a person couldn't use it without b12 to correct mcv without preventing the neurological damge of b12 deficiencies. It bears no resemblence to what we really need to be effective. Metafolin has no known side effects different from placebo in doses up to 15mg according to research.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Thanks Fredd, for the reply. I just did another post essentially asking the same question about MethylB12. I have insomnia vs. people who sleep too much, and Methyl b12 and Metfolin do make it worse, and I am trying to work through it.

I have read of a few other people who say they "can not sleep at all" with Metafolin. Over on ME/CFS forums. And a few others. This may be a very "rare" reaction and it is quite possible that like me, these people already have pre-existing insomnia and metafolin is just, for whatever reason, making it worse. Maybe it makes it worse before it makes it better? I don't know.

I do know, for certain, that B6 gives me insomnia if taken over the RDA. This, does not seem to be so uncommon. I don't think any of the other b vitamins make it worse. B6 I believe is supposed to be directly involved in converting certain substances into serotonin. The funny thing is, anything the increases serotonin makes my insomnia worse, also! I believe I am one of the "HIGH SEROTONIN" types. Even L-trytophan gives me insomnia, exactly the opposite of what it is supposed to do!

I've been trying all this on and off for about FOUR years. Yikes! That being said, I have about 3 diagnosed sleep disorder and they play a huge role in my illness, maybe more than most, and this was all triggered by severe EBV-HHV6a but had symptoms including sleep disorders (NO circadian rhythm) since I starting getting mysterious "infections" in late childhood.

Having this circadian rhythm sleep disorder is like living with jet lag all the time on top of everything else!

P.S. I tested negative the the MTHR mutation, but I haven't had the intense testings others have had.



http://forums.phoenixrising.me/show...h-footnotes-surveys-of-peer-reviewed-research

Sleep Disturbances: The use of MetCbl in the treatment of a variety of sleep-wake disorders is very promising. Although the exact mechanism of action is not yet elucidated, it is possible MetCbl is needed for the synthesis of melatonin, since the biosynthetic formation of melatonin requires the donation of a methyl group. Based on available information, MetCbl appears to be capable of modulating melatonin secretion, enhancing light-sensitivity, and normalizing circadian rhythm.
 

Rockt

Senior Member
Messages
292
I think this might be related.

I've tried different Bcom without success. I get a mental malaise that worsens my already bad brain fog. The AOR brand makes me noticably sleepy. I've had the best results, (though not great), taking Jarrow B-Right every second night. Is there another brand that might be better?
 

Calathea

Senior Member
Messages
1,261
People with circadian rhythm problems - I would strongly recommend trying darkness therapy and/or light therapy, though I'd start with darkness therapy. As far as I am aware, circadian rhythm problems are primarily caused by the wrong type of exposure to light and darkness. It's common in the modern world anyway due to artificial lighting and so forth, but far more so in anyone who is unable to get outside much (or at all) due to illness. I've written a website about all of this here.

While we're discussing meds that can cause odd sleep reactions, I had this in the summer with amitriptyline. Low-dose amitriptyline is meant to help sleep, and often causes increased hunger, right? Well, it gave me insomnia and lack of appetite. No idea why. If anyone can draw exciting conclusions from this, do let me know.

1/4 of the dibencozide tablet every 2-3 days is much more affordable! It's still about 30 for 60 tablets, though, which is something I need to think about carefully, especially as importing it presents problems with customs.

Anyway, I have quartered some Metafolin tablets and put them in the week's boxes, starting from lunchtime today (lunchtime seemed a good time to start with). I'm not feeling too tired today, which is impressive as after spending yesterday asleep, I didn't sleep too well last night, especially since there was a weird foghorn-like noise going on intermittently all night, wild winds in the early morning, and my beloved was occasionally snoring as well.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
People with circadian rhythm problems - I would strongly recommend trying darkness therapy and/or light therapy, though I'd start with darkness therapy. As far as I am aware, circadian rhythm problems are primarily caused by the wrong type of exposure to light and darkness. It's common in the modern world anyway due to artificial lighting and so forth, but far more so in anyone who is unable to get outside much (or at all) due to illness. I've written a website about all of this here.

While we're discussing meds that can cause odd sleep reactions, I had this in the summer with amitriptyline. Low-dose amitriptyline is meant to help sleep, and often causes increased hunger, right? Well, it gave me insomnia and lack of appetite. No idea why. If anyone can draw exciting conclusions from this, do let me know.

1/4 of the dibencozide tablet every 2-3 days is much more affordable! It's still about 30 for 60 tablets, though, which is something I need to think about carefully, especially as importing it presents problems with customs.

Anyway, I have quartered some Metafolin tablets and put them in the week's boxes, starting from lunchtime today (lunchtime seemed a good time to start with). I'm not feeling too tired today, which is impressive as after spending yesterday asleep, I didn't sleep too well last night, especially since there was a weird foghorn-like noise going on intermittently all night, wild winds in the early morning, and my beloved was occasionally snoring as well.

Hi Calathea,

The Source naturals Dibencozide are the ones I was talking about quartering. That gives 2.5mg/tablet quarter, very similar to the Counbtry Life 3mg. The Source Naturasl I buy from Iherb are US$42 for 120 tablets.

I had lots of problems with various meds for sleep. The amitriptyline worked great except by the third day it gave me projectile diarhea. Trazadone kept me awake for 3 days and I was a totaL wreck from it. I was about a month into mb12 before my sleep started improving. By the time a year came by I was sleeping wonderfully. Metafolin started me dreaming again for the first time in decades the very first day I took it.

IHERB ships overseas for a minor shipping charge up to a certain price and weight limit for the package and I am told those small packages are rarely bothered if the right form of shipping is chosen.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
. Trazadone kept me awake for 3 days and I was a totaL wreck from it. I was about a month into mb12 before my sleep started improving. By the time a year came by I was sleeping wonderfully. Metafolin started me dreaming again for the first time in decades the very first day I took it. QUOTE]


Hi, Fredd,

Now there is an interesting difference between us, Fredd. You said you hadn't dreamed in decades before Metafolin. I have the opposite problem. I dream NON-STOP. I mean constantly. As soon as I fall asleep. I can tell you in vivid detail the dream I had last night, the night before, dreams I had years ago, dreams I had 10 years ago! If I wake up, I start a new dream all over. I starting having lucid dreams at age 16. And something called "False awakenings" when you dreams that you are awake, but then you realize you are still asleep. That, is scary, and I haven't had that in a few years.

The only time I have slept at all without dreaming is when I took a drug that literally supresses REM sleep. A drug for narcolepsy. But I would dream again immediately If I fell asleep once it wore off.

This is yet another reason why I am more and more thinking that SLEEP is what is driving my illness to it's severity. It appears to be "abnormal" to dream this much and have so much dream recall, I'm told by every doc, unless you have narcolepsy. Actually, I do dream like a narcoleptic. Now I just have to try to get to the bottom of what I can do about it to improve it. I have been trying for more than a decade. Geeze, have I tried. I'd need 2 hours to tell you all the things I've tried.

P.S. Had to mention, I wonder if the Trazodone you took was made by PLIVA. I just did a post on this and about 90% of the people online I've found who complain of trazodone keeping them awake say it was PLIVA brand. I had my own horrendous experience with this generic. It is not effective for sleep and seems to have the opposite effect on almost everyone. I don't know what the heck Pliva does to their trazodone. But I try to spread the word when I get a generic that is way sub-par.
Anyways, atleast you don't need any of those meds anymore.


Hi TheMoonIsBlue,

The dreams the way you describe and REMEMBER indicates that you are not dipping down into deeper dreamless sleep after dreaming and this is what causes forgetting. Also that deeper sleep is refreshing restorative sleep.

My problem was that for 16 years or so the only difference between being awake or asleep was whether my eyes were open or closed. The consciousnes was about the same. I had incredibly prolonged hypnogogic state. I had hyponogogic "hallucinations" but no dreaming per se. I frequently got just deep enough to have sleep paralysis. I learned how to come out of the sleep paralysis if I wanted to.

Perhaps some pof the below might be helpful or at least informative. Good luck.

The trazadone was about 20 years ago. I don't remember what brand but the form was distinctive. It was several,at least 3, hexagonal (I think) sections that could be broken off as any number of sections for adjusting dose.

From this survey paper with footnotes to original sources: http://forums.phoenixrising.me/showt...iewed-research


Sleep Disturbances: The use of MetCbl in the treatment of a variety of sleep-wake disorders is very promising. Although the exact mechanism of action is not yet elucidated, it is possible MetCbl is needed for the synthesis of melatonin, since the biosynthetic formation of melatonin requires the donation of a methyl group. Based on available information, MetCbl appears to be capable of modulating melatonin secretion, enhancing light-sensitivity, and normalizing circadian rhythm.


Uchiyama et al have reported that intravenous injections of MetCbl increased rectal temperature in the later hours of the daytime and correspondingly improved alertness, as assessed with a visual analog scale, during the same time interval. They suggest these observations were mediated by an effect of MetCbl on the circadian clock.49


Tomoda et al report a case of a 13-year-old male with adrenoleukodystrophy who had developed a sleep-wake disorder subsequent to his complete loss of vision. His sleep-wake cycle had been 25 hours; however, following administration of MetCbl, his sleep-wake rhythm was normalized. After MetCbl therapy, circadian rhythms in his plasma melatonin and beta-endorphin levels approximated those of healthy volunteers, and his peak cortisol time shifted backward.50


Yamada et al have reported the successful treatment of a 32-year-old male patient, who had suffered from recurrent hypersomnia for 12 years, with administration of MetCbl. During this period of time, the individual had experienced several episodes of hypersomnia, lasting a few days at a time, reoccurring each year. The individual had also reported the frequency of these episodes had increased during the past two years. MetCbl was administered for six months, during which time no episodes of hypersomnia were experienced. After cessation of treatment, over a follow-up observation period of 17 months, no episodes of hypersomnia were noted.51


Ohta et al report that two adolescent patients suffering from persistent sleep-wake schedule disorders appear to have responded to treatment with MetCbl. In this report, a 15-year-old girl diagnosed with delayed sleep phase syndrome (DSPS) and a 17-year-old boy with free-running sleep-wake rhythm (hypernychthemeral syndrome), had consistently complained of not being able to attend school despite trials of several different medications. Immediately following administration of 3 mg/day of MetCbl, an improvement of both sleep-wake rhythm disorders was observed. Serum concentrations of vitamin B12 during treatment were in the high range of normal or above normal. The duration of the sleep period of the DSPS patient decreased gradually from 10 hours to 7 hours, and the time of sleep onset advanced from 2 a.m. to midnight. The period of the sleep-wake cycle of the hypernychthemeral patient was 24.6 hours before treatment and 24.0 hours after treatment. Neither of these patients had shown any laboratory or clinical evidence suggestive of vitamin B12 deficiency prior to the therapy.52


Mayer et al investigated the effects of MetCbl and CN-Cbl on circadian rhythms, well-being, alertness, and concentration in healthy subjects. Six women and 14 men were randomly assigned to receive either 3 mg of MetCbl or 3 mg of CN-Cbl for 14 days. All individuals were initially observed for nine days prior to beginning either supplementation regime. Activity from 2300-0700 hours increased significantly with supplementation of both forms of vitamin B12. However, sleep time was only significantly reduced in the group receiving MetCbl. In this group, improvements in subjective parameters of "sleep quality," "concentration," and "feeling refreshed," as determined by a visual analog scale, were correlated with vitamin B12 plasma levels during the first week of MetCbl supplementation. No observed changes in either cortisol excretion or temperature were noted in individuals receiving either form of vitamin B12. The authors concluded that, "...only methylcobalamin has a positive psychotropic alerting effect with a distribution of the sleep-wake cycle toward sleep reduction."53



Eight young males were subjected to a single-blind cross-over test to determine the effects of MetCbl on the phase-response of the circadian melatonin rhythm to a single bright light exposure. MetCbl (0.5 mg/day) was injected intravenously at 1230 hours for 11 days. Starting on day 12, this regimen was superseded by oral administration of MetCbl (2 mg tid) for seven days. The melatonin rhythm before the light exposure showed a smaller amplitude in the individuals treated with MetCbl than in those receiving the placebo. The light exposure phase-advanced the melatonin rhythm significantly in the MetCbl group, but not in the placebo group, indicating MetCbl enhanced the light-induced phase-shift in the human circadian rhythm.54
 

Calathea

Senior Member
Messages
1,261
Freddd, me dear, would you mind editing your last post to take out the bold and large font? ME eye problems, you know!

Hi Calathea,
I had the same reaction to Doxepin, which is very similar to amitriptyline. I was a very low dose, under 5mg. I would fall asleep and then almost immediately be Wide awake. WIDE awake. No exciting conclusions sorry, lol. I think both meds act on histamine receptors in low doses.

Boy, if I could tell you all the things I have tried for these circadian sleep problems of mine. I mean, I've done bright light therapy as soon as you wake up (this had the most bizarre effect of making me wake up every hour on the hour, doctor said I "must be using it too late in the day", please, I literally rolled out of bed and turned it on first thing, blah!) Darkness therapy, I will read up on what you posted. I do not keep any lights on within 2 hours of my "projected" sleep time. Some people say they actually wear sunglasses before bed....

Doing a lot of research and picking peoples brains, It appears what I have going on is "Non-24 hour sleep wake cycle disorder". Different than delayed sleep phase syndrome, it seems like some people have an "internal clock" that runs longer than 24 hours, so their bedtime is constantly moving forward. I know melatonin in HIGH doses like the drug rozerem is used by some docs for this but I can't use any more than a sprinkle of melatonin, wicked headaches and makes everything worse.

I had "pure" delayed sleep hase syndrome as a teenager, but it wasn't until a few years after contracting the virus-that-did-me-in that my sleep cycles starting running longer and longer and unable to control.

I even did my own little experiement that was used by sleep specialist in the past but is now "defunct" I think, where you go to bed 3 -4 hours LATER each day, until you finally reach your desired bedtime, say 11 pm. Then you force yourself up at the same time every morning. That about drove to the brink mentally and physically.......

I'm sure this is not interesting to you, sorry! Rambling.

Actually, it's very interesting - why do you think I ended up writing an entire website on this topic?! Could you tell me more about what happened with the bright light therapy? I presume that you mean that you would wake up hourly at night (ok, using "night" here to indicate when you were asleep, which I realise could have been at any time at all), and then use the lightbox when you woke up? What sort of lightbox was it, preferably the brand and model name, and how long were you using it for? And are you the sort of person who sleeps really badly if you have an alarm set for the next morning?

As for darkness therapy, I'm not quite sure what you've followed. Were you in complete and utter darkness, blackout blinds, no lights or computers or TVs on? I don't actually use that sort of darkness therapy, it's been used a bit in trials for bipolar disorder and it got results when followed in a research environment, but they all commented that it's practically impossible to follow at home, no one wants to spend 4-6 hours a day unable to do anything except listen to music or audiobooks, and not everyone can make themselves a meal etc. in pitch darkness. The rest of the time, both in terms of research and real world use, people use virtual darkness. Since it's blue light (aruond 470nm) that sets the circadian clock, suppresses melatonin and so forth, you just need to block blue light. The cheap method is to use yellow light bulbs (opaque coating, not the reflector bulbs) and put a strong orange filter over your computer and TV; the convenient way is to get a pair of glasses with orange lenses which will block 100% of blue light. You also need to make sure that you're sleeping in total darkness, and don't expose yourself to any blue light during the night, which roughly translates as a blackout blind and getting used to going to the loo in the dark.

I started off with bright light therapy and got my N24 back to DSPS (I too started with DSPS which turned into N24 over the years) immediately using it, although my bedtime would still occasionally creep later if I stayed up too late, and it certainly wasn't prone to staying at a convenient time. The darkness therapy controls the DSPS about 98% of the time, and the other 2% is almost always when I'm on meds which mess with my sleep. I also use dawn simulation to help reinforce my sleep pattern and to make it easier for myself and my partner to get up in the morning. I saw a local sleep specialist after a few months of bright light therapy, and he was hopeless, in fact that clinic doesn't deal with circadian rhythms at all, just sleep apnoea and narcolepsy. His entire advice on the light/dark thing (I hadn't discovered darkness therapy at this point, and melatonin isn't really used in the UK) was, "Keep on using the lightbox." Although he did tell me to try to avoid napping for more than an hour because after that you go into deep sleep, which was the one useful thing to come out of the whole experience.

I think it's called chronotherapy, where you go to bed 3 hours later every day, and it's a really bad idea. I have yet to encounter a single person it's worked for. Everyone I've known who's tried it, and I was on the Nite-Owl list for a while so this is a lot of people, found that it just made their sleep problem worse and gave them a hellish week of it while they were trying to follow the instructions. I'd guess that it's to circadian rhythm disorders as GET is to ME, only so few people have heard of or know anything about circadian rhythm disorders that at least you don't get people constantly suggesting it. Mind you, you do eventually want to decapitate the next person who says brightly, "Have you tried making yourself go to bed and get up earlier?"

Melatonin tablets didn't do a thing for me, by the way. I'd far rather stimulate my body to produce its own melatonin than take artificial stuff if it's possible, anyway, I think it's a better way of dealing with the problem.

I really need to do a post on circadian rhythm stuff, don't I. I've been toying with the idea of putting together some sort of poll, but they're always tricky beasts and with the limitations of polls on this forum, I'd really have to make sure I got the questions right. Maybe we could thrash out some questions in this post? To start with, should I send people off to the CET Morningness-Eveningness Questionnaire or just give them a basic description of DSPS, ASPS and N24? And considering that the poll appears at the top of the post (sorry if it sounds odd to point this out, I'm used to the LiveJournal format where you can do a nice complex poll and put an explanation in front of it), are people going to read the definitions of the circadian rhythm disorders as well as what light therapy and darkness therapy are? It'd probably need a box to tick about whether or not you use a computer or TV late at night, too.
 

Calathea

Senior Member
Messages
1,261
I've just spoken to one of my specialists (totally separate area, this stuff just came up in passing) who reckons that my liver is probably not too happy due to the gall bladder situation, based on certain symptoms. Does this affect anything? Should I maybe back down to a quarter-tablet of the B12, or even come off it, just to keep myself going while I am having these gall bladder dramas? I'm due to see the surgeon in a month and will probably have to have the gallbladder out. I need to be as well as I possibly can be for all of that, so if I can get myself to the point where I'm improving on this protocol that'd be helpful, but a detox-fuelled crash wouldn't be. Today I slept about 10 hours or so again and am struggling not to fall asleep in the afternoon; it's not that I object to napping, sometimes a siesta routine works well for me, but with current stuff I'm worried about messing up my sleep tonight, plus I have the GP due to ring. I'm also continuing to have a lot of pain with my left shoulder, which could possibly be calcific tendinitis again but feels like it's the wrong area, and this is resulting in pain and having to take hefty meds which are knocking me out more than usual. And after getting vaguely stable on 900mg gabapentin, I've now been told to come off it altogether. Probably the best thing for me, but I have no idea how the combination of that plus the B12 will affect my sleep. Maybe the insomnia effect of coming off gabapentin might actually balance out the hypersomnia I'm getting from the B12, I might get lucky for once!

Rich, I'd be very grateful if you could give me some advice here!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I've just spoken to one of my specialists (totally separate area, this stuff just came up in passing) who reckons that my liver is probably not too happy due to the gall bladder situation, based on certain symptoms. Does this affect anything? Should I maybe back down to a quarter-tablet of the B12, or even come off it, just to keep myself going while I am having these gall bladder dramas? I'm due to see the surgeon in a month and will probably have to have the gallbladder out. I need to be as well as I possibly can be for all of that, so if I can get myself to the point where I'm improving on this protocol that'd be helpful, but a detox-fuelled crash wouldn't be. Today I slept about 10 hours or so again and am struggling not to fall asleep in the afternoon; it's not that I object to napping, sometimes a siesta routine works well for me, but with current stuff I'm worried about messing up my sleep tonight, plus I have the GP due to ring. I'm also continuing to have a lot of pain with my left shoulder, which could possibly be calcific tendinitis again but feels like it's the wrong area, and this is resulting in pain and having to take hefty meds which are knocking me out more than usual. And after getting vaguely stable on 900mg gabapentin, I've now been told to come off it altogether. Probably the best thing for me, but I have no idea how the combination of that plus the B12 will affect my sleep. Maybe the insomnia effect of coming off gabapentin might actually balance out the hypersomnia I'm getting from the B12, I might get lucky for once!

Rich, I'd be very grateful if you could give me some advice here!

Hi Calathea,

Here is what is on the liver in the survey papers I just posted yesterday.

http://forums.phoenixrising.me/show...h-footnotes-surveys-of-peer-reviewed-research
Liver Disease: AdeCbl and MetCbl appear to offer a theoretical advantage over either CN-Cbl or OH-Cbl in the treatment of liver disorders. Although high blood levels of vitamin B12 have been reported in patients with hepatitis, cirrhosis, and other liver disease, it is not unusual to actually have a correspondingly low liver tissue concentration of vitamin B12 and its coenzymes. Glass et al proposed this observation might be due to an impaired ability of the liver to absorb vitamin B12 from the portal circulation.39


Because a vitamin deficiency can persist during liver disease despite oral vitamin supplementation, Leevy et al have suggested the liver's ability to convert vitamins into metabolically active forms might be compromised.40 It is possible, during these pathological conditions, the liver will not contain adequate supplies of the needed cofactors to optimally form coenzyme analogues of vitamin B12. Because of these factors, Iwarson et al suggested that vitamins used in the treatment of liver disorders should be given in their metabolically active form, thereby eliminating the need for conversion to occur in damaged liver cells.41


In experimentally induced lipid peroxidation of liver microsomes resulting from poisoning of rabbits with phenylhydrazine, MetCbl and AdeCbl were shown to modulate the activity of the monooxygenase system. MetCbl appeared to induce the system, and AdeCbl seemed to repress the system. Administration of MetCbl into poisoned rabbits stimulated the activities of dimethyl aniline N-demethylase, aniline p-hydroxylase, NADPH-cytochrome P-450, and NODH-cytochrome b5 reductases as compared with normal state, while AdeCbl inhibited the reduction of all the monooxygenase system patterns studied. Although the therapeutic relevance of these actions of the coenzyme forms of vitamin B12 on the monooxygenase system is open to debate, the authors observed that both of these coenzymes contributed to normalization of lipid peroxidation in liver microsomes of poisoned rabbits.42 AdeCbl also exerts hepato-protective activity after carbon tetrachloride-induced hepatitis in rabbits. The normalization of results from the sulfobromophthalein test and the normalization of activity of sorbitol dehydrogenase and alanine aminotransferase indicate AdeCbl enhanced the recovery process.43


In an experimental model, a low protein choline-deficient diet, although it did not change total cobalamin content in the liver of rats, significantly decreased total and non-protein sulfhydryl (SH)-group levels as well as GSH transferase activity in the liver. MetCbl (but not AdeCbl) administration restored non-protein SH-group levels and GSH transferase activity, and administration of both MetCbl and AdeCbl normalized total SH-group content.44


AdeCbl appears to be a useful supplement for support of patients with hepatitis A. Two groups of patients from the same hepatitis A epidemic received either AdeCbl or OH-Cbl. Patients were given 1 mg per day i.m. for the first 12 days and then received 1 mg orally for the next 23 days. The group treated with AdeCbl had a quicker return to normal of serum aminotransferase levels.41 Fossati reported improvements in body weight and appetite in adults with liver disease and chronic pulmonary tuberculosis following supplementation with 6 mg/day of AdeCbl for three months.45


Medina et al treated 37 people suffering from viral hepatitis with either AdeCbl or CN-Cbl. Their observations indicate the AdeCbl was significantly more efficacious than CN-Cbl in normalizing total bilirubin, serum glutamic oxaloacetic transaminase (SGOT), serum glutamic pyruvic transaminase (SGPT), and alkaline phosphatase values. The AdeCbl was administered i.m. at a dose of 1 mg per day for the first 12 days and then orally for the next 12 days. After 24 days total bilirubin was normal in 13/18, SGOT in 15/18, SGPT in 10/18, and alkaline phosphatase in 18/18 subjects receiving AdeCbl.46

 
Messages
15,786
Extensive use of color is very hard for me to read, especially since I use a dark background to cut down on glare. I'm sure you have interesting things to say, but I can't read them when they're colored.
 

Rockt

Senior Member
Messages
292
I think this might be related.

I've tried different Bcom without success. I get a mental malaise that worsens my already bad brain fog. The AOR brand makes me noticably sleepy. I've had the best results, (though not great), taking Jarrow B-Right every second night. Is there another brand that might be better?

Anyone? Any suggestions for Bcom?
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City

Hi Valentijn,

I appologize for the inconvienience. I always like the quotes to be obvious for clarity and sometimes I like to add emphasis to certain things to draw attention to them. When I'm quoting from more than one source I lke to make that clear too. Can you tell me three distinctions I can make from standard that will work for you whether bold or itallics or font or sizes or colors. I prefer larger than default size for my own visual issues.
 

Calathea

Senior Member
Messages
1,261
A row of asterisks or a long line or something works nicely, it makes it clear at a glance that it's something separate, but leaves the formatting unchanged. Bold or italics are fine if it's the odd word or two, though. I prefer larger than default size as well, but I've already got that set up in my browser, so that if someone puts their post in a larger size still, it's likely to end up too large for my eyes to focus on comfortably. Thanks for being helpful about this!