• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Freddd's protocol killed my sleep

Aerose91

Senior Member
Messages
1,401
The couple times i overexerted badly i have a distinct set of symptoms that happens in my brain and that then causes some type of damage that in most cases i never recover from.


As i titrated up with freddd's protocol i had zero improvements but then one night, when upping my dose of mfolate I had those same overexertion symptoms which scared the shit out of me so i cut way back.


Unfortunately the "thing" that happened was that now, every single night, between 3 and 5 am i get hit with a shot of adrenaline and wake up, rarely getting back to sleep. I know its not low blood sugar because i know what that feels like and my eating habits are solid- this happened in direct relation to upping my mfolate. In 4 months now it hasnt gotten even slightly better, either.


My mb12 intake was fine and everything else, i would just really really like for my brain to recover from this and get my sleep back, the deprivation is really taking a toll.
 

Aerose91

Senior Member
Messages
1,401
Sorry to hear that :/ its like my body is locked onto the middle of the night to wake up and i cant reset it. Its awful.
 

Lou

Senior Member
Messages
582
Location
southeast US
@Aerose91 My first reaction was, 'you can sleep to 5am, what's wrong with that?' But we're all different, and of course, waking at 3am is never good. Have you tried taking a tab of enzymatic B12 just before sleep?
 

Aerose91

Senior Member
Messages
1,401
@Aerose91 My first reaction was, 'you can sleep to 5am, what's wrong with that?' But we're all different, and of course, waking at 3am is never good. Have you tried taking a tab of enzymatic B12 just before sleep?
Considering i struggle to fall asleep at midnight and sleel really poorly till 4, i need to sleep longer. And yes, ive taken up to 5mg mb12 before going to bed as well as when i wake up and nothing. The most troubling part is ive been taking almost no methyl supps for several months and it hasn't shifted at all
 

sregan

Senior Member
Messages
703
Location
Southeast
Taking tryptophan an hour or so before bed with like 40mg b3 and maybe a tiny bit of p5p has helped me sleep a lot better when taking methylation supps
 

rwac

Senior Member
Messages
172
Unfortunately the "thing" that happened was that now, every single night, between 3 and 5 am i get hit with a shot of adrenaline and wake up, rarely getting back to sleep. I know its not low blood sugar because i know what that feels like and my eating habits are solid- this happened in direct relation to upping my mfolate.

CAn you try eating more carbs? Folate will increase your metabolism and your need for carbohydrates.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
@Aerose91 Do you know your B2 status? I've had a tough time with sleep issues and actually titrated up to 7,000mcg MeB12 and 2,000 mcg Folate before advice from another knowledgeable source who'd taken a look at my low B2 levels on a NutrEval test suggested that I didn't have enough B2 to keep all the methylation going. In fact, as soon as I began supplementing with the B2 as FMN and cutting back on the methylation supps (down to half what I was taking) things began to improve.

It wasn't easy to take the B2 at first. I was sensitive to it as with everything else, so I began with 1/4 tablet for a week, 1/2 the second week, now 3/4. But even in that first week I had some very good nights. Now I'm more tired than I had been and realize just how low on B2 I am. You need B2 in many of its forms--FAD, FMN for many of the cycles we're trying to keep chugging, so it stands to reason...

Just my recent experience.

Good luck with unravelling your mystery.
 

Aerose91

Senior Member
Messages
1,401
@Aerose91 Do you know your B2 status? I've had a tough time with sleep issues and actually titrated up to 7,000mcg MeB12 and 2,000 mcg Folate before advice from another knowledgeable source who'd taken a look at my low B2 levels on a NutrEval test suggested that I didn't have enough B2 to keep all the methylation going. In fact, as soon as I began supplementing with the B2 as FMN and cutting back on the methylation supps (down to half what I was taking) things began to improve.

It wasn't easy to take the B2 at first. I was sensitive to it as with everything else, so I began with 1/4 tablet for a week, 1/2 the second week, now 3/4. But even in that first week I had some very good nights. Now I'm more tired than I had been and realize just how low on B2 I am. You need B2 in many of its forms--FAD, FMN for many of the cycles we're trying to keep chugging, so it stands to reason...

Just my recent experience.

Good luck with unravelling your mystery.
Actually, the only thing that's ever kind of helped my energy and mood is B2 injections. Since i cant get them anymore i take B2 orally every day- 125 mg but i dont know how much im actually absorbing. I stopped all methyl supp.s and did the doctors data methylatiin panel the other day so am waiting for that to come back before i go further. The effects Freddds protocol had on my brain were enough to get me to hold off for now
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
It will be interesting to see what's going on...

I've also used niacin at night--though you have to time it to allow for the disturbance of the flush (for me this is about an hour from ingestion). This can suffuse my mind and body with calm. It's not always the answer, but at times it can give me four hours straight of lovely sleep...

As @sregan mentions, LTryptophan, particularly with a bit of B6 can be terrific for sleep. I took some just last night when my brain wasn't going anywhere near sleep... Source Naturals has a great product with a bit of B6 I. It. Just 1/2 was all I needed to return to sleep for another 3 1/2 hours.
 

manna

Senior Member
Messages
392
I've spoken with a fair few folk with M.E./CFS who awaken at the same time, often within minutes, most nights. I'm sure you can look to the meridian clock in Chin. Med. to find what is causing it. Between 3-5 is the high phase and repair time for the lung meridian. It's telling that you're awake for 2 hours as each meridian has a 2 hour "high phase". For 2 hours prior to the lung phase (1-3 a.m. give or take with daylight savings) is the liver meridian and following, from 5-7 a.m., is the colon/large intestine. Often improving the meridian that goes before &/or after can help. So diet, because food sits longest in the colon, helps the lungs because they are connected, meridian wise.

Although it feels like adrenaline it's more likely a shortage of brain hormones. I'm not very technically minded as far as western medicine goes so forgive the lack of correct specifics. I believe the master gland controls other glands, repair and sleep. The wired feeling is possibly because the lung meridian is so out of kilter that you're body and brain are unable to produce enough hormones to repair it and sleep, at the same time. There are a few things I might do but I'm not sure if offering possible solutions is cool. I find just understanding the whys to be most important. Not that this "hypothesis" is correct.

Often in Chin. Med. they look to specific sleep disturbances and their time of happening as a way to diagnose specific ailments. It is my feeling that nightmares are often due to meridian systems being off kilter. Most likely during the day we have similar episodes though because they don't interrupt sleep they are not as noticeable. I find I get moody during the heart meridian phase between 11-1 p.m. and very sleepy during the small intestine phase between 1-3 p.m.

I was speaking to my mother and she was describing how her and her friend always feel awful between 7-9 in the evening with her friend barely able to climb the stairs at that time. That time is the pericardium/heart sack and both my mother and her friend are on heart medication. It's really quite revealing when you delve into it and knowing why I'm edgy at certain times of the day is handy because I can quantify the reasons and see that it's not me or my mind per se but my body having a little moan. Often then I just stop the wired thinking knowing that it's not me.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Because you don't already have enough to think about, Aerose ..

I was reading Richard Horowitz' book "Why Can't I Get Better?" the other day and this caught my eye (in the section on gut flora):

The roles of bacteria in the gut, and their subsequent effects on cytokine production, even play a role in sleep. At midnight, when cortisol production should be low, bacterial peptides from GI flora stimulate the immune cells of our gastrointestinal tract (intestinal macrophages and T cells) to increase cytokine production and produce IL-1 and TNF-α. These cytokines stimulate non-REM sleep (early deep sleep), and later during the night, as IL-1 beta decreases, this helps to initiate the transformation from non-REM sleep to REM sleep. Some severely ill Lyme patients, who have high cortisol levels at night and can’t fall asleep, will not produce the right types and levels of cytokines necessary for the induction of deep sleep, or produce too many cytokines, making them drowsy during the day (hypersomnolent).

I just wonder, if you're waking a specific time each night, if the problem is with a transformation from one sleep phase to another. Just thought I'd throw it in, in case it's a clue. I hadn't really thought about the gut and sleep before.

Horowitz has a whole section caused 'Deconstructing Sleep Problems' elsewhere in that book.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Unfortunately, we're left to deconstruct our sleep issues, like so much else. I haven't yet found a doctor who actually led me down the right path. I DID find one I worked well with in collaboration. This was after I took control and and began to do my own research. Maybe collaboration is the best we can hope for.

@sarah darwins Your reference to the importance of gut bacteria reminds me that I ought to head back to the clostridium butyricum thread: http://forums.phoenixrising.me/index.php?threads/clostridium-butyricum-a-game-changer.37324/

There is always work to be done!