Can't sleep at all

[A zombie]

lyme disease

 

[taniaaust1]

It was induced by emotional stress I fear...

I knew about this illness before, because a relative has it, so I understand what this is when my blood flow is completely shut down suddenly. But I didn't know about this no-sleep-thing, I thought you would always sleep very long instead of nothing at all. I could sleep for 5 hours due to a medication now, but I'm not sure how to do it in the following years. I actually wish to sleept EVERY night.

ME/CFS cant be just diagnosed with symptoms, one needs lots of tests before a diagnosis is done to rule other things out which could be causing the symptoms. It takes many months to go ruling out everything which needs ruling out. (and its not just about fatigue either, ME is a very complex condition in which a constellation of symptoms appear).

 

[marpet]

I know, I know, I'm on it. Problem is in Germany there seems to be no chance to get cfs diagnosis if it did not start with an infection. For me it started after having a lot of stress.

The insomnia is still the most frightening symptom. I am fully dependent on sleep meds but they stop working after a short time so im desperate.

 

[IntelligentImpulse]

I know, I know, I'm on it. Problem is in Germany there seems to be no chance to get cfs diagnosis if it did not start with an infection. For me it started after having a lot of stress.

The insomnia is still the most frightening symptom. I am fully dependent on sleep meds but they stop working after a short time so im desperate.

Have you heard of the red crescents test (also found in these forums?) I can't personally say how accurate it is as a diagnosis but it might be worth a read through : http://www.immunesupport.com/93sum007.htm

I can't gauge how accurate the test is, unfortunately.

Here is something you can read through : http://www.mayoclinic.org/diseases-...-syndrome/basics/tests-diagnosis/con-20022009

 

[marpet]

The meds I tried back then and how much they helped me (German names since I only know these):
Promethazin (terrible side effects after only a few nights, dropped it)
Melperon (helped me somewhat)
Vivinox (OTC) (Helped just a bit, vivid dreams)
Zoplicone (considered strong, hardly helped me. gave me sleep paralysis once)
Cetirizin (didnt do much)
Lorazepam (no effect)
Mirtazapin (breakthrough, finally brought me back to sleep after a while. side effect: strong appetite and weight gain. first gained 20kg and had to lose them several months later)

 

[ahmo]

Vitamin B12 seems to have been a big contributor to my awful insomnia during my first 8 years of ME. Once I got to a theraputic level, sleep became much better.

y

‬

http://www.b12deficiency.info/
This site was created as a hub to bring all the key websites on vitamin B12 deficiency together in one place.

 

[dannybex]

Vitamin B12 seems to have been a big contributor to my awful insomnia during my first 8 years of ME. Once I got to a theraputic level, sleep became much better.

@ahmo, I know we're all different, but can you tell me what your personal therapeutic level is? And how did you know it was the right level for you? Also, how much folate (methyl, etc) did you find you need to take to balance the B12?

Thanks in advance.

Dan

 

[dannybex]

@ahmo, I know we're all different, but can you tell me what your personal therapeutic level is? And how did you know it was the right level for you? Also, how much folate (methyl, etc) did you find you need to take to balance the B12?

Thanks in advance.

Dan

Tagging @ahmo again, hoping you'll reply. Thanks.

 

[Judee]

Don't know if it will help anyone but I sometimes take ornithine for ammonia detox and reading the reviews on amz yesterday, I saw that a lot of people use it for sleep issues. Maybe it helps by detoxing their levels of ammonia???? (shrug)

Just thought I'd mention it in case it would help anyone.

I sometimes get insomnia but not as much as most people here so I can't really say if it helped my sleep although another supplement I take that has ornithine alpha-ketoglutarate in it does help me to wake up with just a tiny bit of that refreshed feeling that normally eludes us with this disease. (Not mentioning that supplement here because it has been discontinued and I am not able to find it anymore. )

 

[ahmo]

Tagging @ahmo again, hoping you'll reply. Thanks.

Sorry Dan, didn't see this before. It was a lot of B12. I've gone through so many types, and I have such poor memory...but initially I think I was taking 3 B12 tabs sublingually 3x/day. I got there from Freddd's protocol.

I just looked at iherb. Possibly Country Life or Source Naturals MethylCobalamine.

OK, I found something I posted at the time. I'll just copy it here, it includes folate/B12 relationship for me. After using nasal B12 for about 3 years, (because I was concerned about my teeth marinating in the sugary tablets) I'm now using B12oils. cheers, ahmo

I’ve just re-read Martial/Todd’s post of a comment Freddd made re raising folate levels. slowly and carefully.


I searched for hours to find that definitive a statement a few months ago. In the end, my brainpower could only manage to ask what I knew at the time was a weird and missing-the-point question, about the relationship of folate to B12. I was desperate to understand how to go about increasing my dose. Prior to this, a year ago, I had experiences from both increasing B12 and increasing folate independently. As I recall, in both cases I lost hair and my scalp became covered with small scabby outbreak. At the first, and worst episode, I was sure I was ‘detoxxing’, because I’d just begun high zinc and other mineral intake. I lost handfuls of hair.


I notice my conversation w/ Freddd, quoted below, was 3 months ago, and I was taking 1.1mg Mfolate. With the instructions Freddd gave, quoted below, I began increasing my dose by 200-300mcg every day or 2. My symptoms narrowed down to a few easily observable ones: a bit of acne, sores at my occiput, scabs on my head, hair loss. I notice now that I can have hair loss in one part of the day, and not in the other. It’s that rapid. The same with the other symptoms. Think epithelial. Not long before the conversation I quote below, I’d asked for help re recurrent blood blisters in my mouth. Freddd responded that he’d no experience, but to think epithelial. That was my wake-up call. I was ready to bust through my mental barriers.

I’d been very conservative in following Freddd’s protocol because I kept reading Rich VanK’s injunctions about it, his concern that the high doses were peculiar to Freddd’s genetics. I repeatedly tried all the elements of the SMP, over a few years, long before knowing there was a forum here. It never worked, I no longer expected anything much from B12 or folate. I searched and re-searched over weeks, when my brain and arms were still very much impaired, to work out whether the correct carnitine was ALCAR or fumarate, LCF. I had ALCAR on hand, that certainly didn’t do anything. And because I just couldn’t find the information, I decided fumarate must be the one I shouldn’t take and so went on to another form. When I took my first dose of LCF, Brighten, quicken, enliven, lights-on are the only way to describe it.

So I’ve continued pushing up based on my symptoms and using self-testing for setting doses. Today I’m at 13.9 mg Mfolate, dividing doses at early AM, midday, bedtime. Inconceivable to me 3 months ago. I’m taking 7.5 mg AdenoB12 , never self-test to go beyond that. MB12 is 15-16mg. I take 500mg L-Carnitine Fumarate, PM/midday.

Cutting my B vits down to very low doses has also been a boon for me. Not only did this stop the insatiable need for potassium, as Freddd said it would, but it eliminated a big sulfur burden for me, freeing up the residual holdings in my 2 formerly-frozen shoulders. I’m now taking what’s essentially a 12mg B Complex BID. I would have laughed at the thought that 25 mg B vitamins had any benefit in the days I took high B’s to calm my nervous system.

So how am I? I’m calm. For the first time in my life I’m calm. After a lifetime of seeking. Before I got to the B12/folate, there was eliminating gluten and dairy, correcting the minerals, removing sulfur and histamines. Detox of microbes and metals is ongoing. But clearly since the full-on B12 protocol there is no longer any form of insomnia, first time in my life. My head space has never been more clear. My cognition is not what it was, but frankly, I now doubt everything about it in the past. I see now how much tendency I had toward ADHD. Luckily I’m old enough to have eaten well and lived cleanly. I’m not able to “be in the world”, but I’ve come to relish my reclusiveness. My overall resilience is increasing. My nervous system is no longer in over-drive. I’d been taking hypothalamus and adrenal glandulars 2/day for 2-3 years. That’s now reduced to 1 each. I’ve reduced my thryoid rx. I can finally meditate again, which was impossible for 2 or 3 years. I now see how much my entire life was under-pinned by profound B12/folate deficiency.

Re B12, I’ve found that when I get symptoms from “over-methylation” after increasing folate....euphoria/hyper, weepy eyes...not quite draining, but thicker than tears, the other night I had tremendous itching in the webs between my fingers...I take a 1mg ET MB12 immediately, and the symptom clears, almost immediately. I think this must be where Ben Lynch advises niacin to tone things down. For me B12 does the trick. Generally this dose becomes part of an ongoing increase of B12, but not always

[Note: I just realized my volubility in this post is, in fact, partially a result of post-folate-increase euphoria. ]

 

[dannybex]

Thanks so much @ahmo. Really appreciate it.

I kind of went through/am going through the same process. Overreacted BIG TIME to overprescribed methyl-supps, which freaked me out so much -- was suicidal -- that I was perhaps too cautious years later. Almost a decade. But can't go back, can only go forward, and I definitely notice a 'calming' from the methylfolate.

I'm now doing b12oils as well, but it's the methylfolate that's making the difference at the moment.

 

[ahmo]

Hey danny, glad to hear this time things are going better.

 

[Kathevans]

@dannybex and @ahmo. I’ve been hanging out at the Understanding B12 Deficiency site on Facebook for a year or so, this after using the oils and coreresponding to Greg Russel-Jones, the company founder and developer of the oils, and I have met with some success. B-12 is rock bottom for me, and I have gone through enough experimentation to know I need at least two squirts of the Adenosyl/Methyl oil each day, and one of the simple Methyl oil. Without the two of the combo oil, I get classic REFEEDING symptoms of insomnia, pain where tendons meet bones (especially in the shoulder top area, and shoulder blades), as well as heart palpitations. Someone here said early on that about 10-15 Enzymatic Sublingual B12s is equivalent to one squirt of the oils...and this seemed about right to me.

It’s been harder for me to determine just how much folate I need—I've gone as high as 20+/day working with a psychiatrist who was familiar with its use as the prescription form of Deplin. But over time, I drifted back down, as more or less didn’t ever resolve some symptoms, the sleep and IBS, for example, and It seemed that high or low didn’t make that much difference... I do notice resolution of many pain symptoms up to about 5mg or so, then it becomes a mystery...

But after working with Greg, and coming to understand that both B-12 and Folate also depend—in order for them to recycle appropriately—on sufficient B2 (think MAO issues...I am ++, as Greg says many who have ME/CFS are), and that in order to have ‘active’ B2, that is the ability to convert it into both FMN and FAD’ you have to have a functioning thyroid gland. Greg uses the minerals Iodine, as Potassium Iodide, Selenium, as Selenite, and Molybdenum, as Molybdate, along with specific thyroid readings, to determine whether the thyroid is, in fact, functioning. (ahmo, this reminds me of your extraordinary, inspirational reaction to the coenzymated form of B2, which I believe is FMN, and therefore, an obvious assist in this area)

Like everything else I have learned here...and elsewhere...it’s complex. But I do feel I am moving forward. Here in the States, if your TSH is between .5 and 5, you are considered normal, but on closer inspection, it seems, I wasn’t/haven’t been converting T4 into T3, and so, have what is known as Low T3. This can be the result of all sorts of things...not enough iodide, not enough selenium, emotional stressors, toxic metal exposure (am currently also doing Cutler Chelation), or other sorts of gut dysbiosis.

The one thing Greg says that sticks with me is that if you don’t have sufficient functioning B2, you will be chewing up the B12 and Folate. And I certainly am still doing that... So that is the goal—adequate fully functioning B2, and with it, perhaps, that hard-earned sleep...

 

[ahmo]

@Kathevans I've been using Source Naturals FMN for some years. I split 1 tab, take 1/2 AM/PM. I started it to help w/ histamine, interesting to see it's role w/ B12, folate. Good luck.