20 hours of non-injecting: Having... - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

20 hours of non-injecting

WIZARD6787 profile image
9 Replies

Having completed a two week trial I did not inject until my stuffy head came back. It was then three days of recovery but nothing severe.

I thought that I might be experiencing shortness of breath at about 6 hours but nothing definitive. I woke up at 11 am with my stuffy head and injected and went back to sleep with no issues.

I have no meaningful information from the past as that is based on less than 4 injections per day.

One thing I noticed is I have developed a habit of evaluating every little thing that is going on with my body. This was developed when injecting less than 4 times a day. Now that I am aware of this habit it will likely go away as it is no longer helpful. It was one of many things that helped me to discover my frequency hypothesis.

I am pleased with the information I got from not injecting for 20 hours although it is subjective. It is helpful for me to have a limit of time between injections although I know that may change one way or the other.

-------------------------------------------------------------------------------------------------------------

Again having just completed a trial I evaluated to determine my next line of inquiry. I let my beginners minds do their thing (after I had ranted) and decided the highest probability of effectiveness was to explore and discover sleep. I might have chosen sleep as I started studying sleep in 1966. What is known about sleep that is meaningful has not changed much and it was not very meaningful in 1966. Most often good sleep is seen as a solution and the cause is never considered. This usually leads to short term solutions that are not effective over time. Most recently CPAP devices. Sleep hygiene was designed by and for office dwellers. I followed that methodology for three years from 1966 to 1968 until I rejected it. So I did not need to study what was thought to be true as I have kept up with the 'studies'

This led me back to my hypothesis with regards to frequency of injections which lead me to maybe it is not best to have less B12 in my blood stream when sleeping which led to maybe that is when I need the most as my body works differently at night and it might be more healing to have more B12 in my bloodstream during the night.

I am using the unproven assumption that my body can heal at a rate that is satisfactory to me if I inject every six hours and more time between injections is not in keeping with my goal of satisfactory healing. This lead to me setting an alarm and injecting every 6 hours. The positive effect was immediate. It has been my experience that an improvement in frequency causes an immediate positive result and then things level out as my body heals.

I reject that EOD is rational for all if patient's if the motivating factor in design is patient outcome It does seem that perhaps the EOD or less works for some it is assumed it will eventually work for all which I reject as being rational or in keeping with a humane standard of care. I am aware it meets the needs of the medical profession and medical facilities.

I discount almost all of the results of my trials of less than 4 times a day.

A small part of my decision to inject every 6 hours was my successful trial of injecting if I happened to wake up more than 4 hours after my last injection.

I have no idea what amount of B12 to inject is best as all my experience is based on the less effective frequency.

I do not find injecting B12 benign to my body with no effect other than more B12 in my urine. I experience changes that could be labeled as side effects. If they go away I consider it a sign of healing although it is hard to experience them.

I am different, I know the effect on my body experiencing injecting 4 times a day. No one that has not experienced injecting 4 times a day is the same in this regards only. This is not a better of worse evaluation it is rational conclusion.

---------------------------------------------------------------------------------------------------------------------------------

I no longer think of myself as lifelong B12 deficient as I recovered without supplementation. I had symptoms of B12 deficiency my whole life off and on and lived in fear of them returning. I doubt I recovered fully but that is not knowable.

I do believe that for reasons unknown my body attacked itself. I believe that my body did so for reasons that are yet unknown. I accept that it might have been best. Does not mean the long term effects are desirable.

I do not accept that severity of symptoms to be a legitimate concept and will not become one until some rational scale of severity is established. It is not helpful due to its subjective nature. All pain and suffering is meaningful.

There is no rational that establishes that PA is permanent and no test that it is or is not. It seems likely to me that with current treatment it is permanent.

I lay no claim to being 'more' rational. I do claim less concern when I can establish to my satisfaction that a conclusion is not rational no matter who made the claim.

I also do not ascribe that any understanding I have will lead to a definitive conclusion. That is one of the ways I use my minds.

Guessing if I used a are you B12 deficient check list it would at this point be negative. That has no value to me as I know I currently need B12 injections in a manner not yet known to thrive in a manner that is satisfactory to me. That is my standard of what works.

If I run out of ideas I think are worth exploring to me I may go over a symptoms list and see which symptoms associated with B12 I have 'cured' and add the symptoms I 'cured' like cramps etc.

Nothing about working with B12 is wonderful. This does not mean I have not had wonderful experiences when working on B12. For me working on B12 is a battle of attrition with no end as of yet.

Written by
WIZARD6787 profile image
WIZARD6787
To view profiles and participate in discussions please or .
Read more about...
9 Replies
WIZARD6787 profile image
WIZARD6787

I have already changed from every 6 hours to every 5 hours due to getting my stuffy head. There does seem to be a slight downturn due to going too long between injections. One injection did not cause an instant turnaround but not injecting soon enough seems to have caused an instant downturn.

Wwwdot profile image
Wwwdot in reply toWIZARD6787

Hi Wiz

Lots of food for thought and a good summary of your trial journeys . This is all getting very exciting as I feel that we are making great progress.

So I take an inference from your summary that another possible factor in our experiments is that the four injections influence different processes in our bodies. I agree with you.

As I tend to be active all day (from approx 10 am to 8pm) I am wondering if for me the early jabs in the day are more influential on my energy levels and if I miss any of these then what I call fast response symptoms (ie a quick downturn) like aches and headaches are my outcome.

My body doesn’t call for the fourth injection like it does for the first three and I tend to do the fourth before bed. You said “This led me back to my hypothesis with regards to frequency of injections which lead me to maybe it is not best to have less B12 in my blood stream when sleeping which led to maybe that is when I need the most as my body works differently at night and it might be more healing to have more B12 in my bloodstream during the night.” I agree with this and I go to sleep topped up with B12.

I have not had four injections for the last two days due to circumstances. What I have noticed is that I have woken several times during the last couple of nights (which I rarely do nowadays) and I have started to have pain in my hand joints again.

I know from past experiences that when I feel sleepy (as opposed to exhausted) it’s because my body is healing. So I am wondering if I am waking in the night and have pain in my hand joints because the nighttime healing mode as you mentioned above was disrupted because I missed some injections?

My current strategy which is the best so far in supporting my lifestyle is 4 injections a day, each approximately 4 hours apart. I am experiencing flexibility in my body’s response to the duration between injection 3 and 4, and injection 4 and 1 the next day, but my body has little tolerance to any shift in the timing of injections 2 and 3 ( so little intolerance to the 4 hour window). I hope to get back to this routine ASAP after the recent disruption.

I look forward to hearing the outcome of your current trial with much encouragement and optimism.

🤗🤗🤗

WIZARD6787 profile image
WIZARD6787 in reply toWwwdot

>>So I take an inference from your summary that another possible factor in our experiments is that the four injections influence different processes in our bodies.

No I do not have any hypothesis on that.

Working with my current understanding/experience that my body uses B12 injections more effectively for healing with injections 4 hours apart and that my body works differently at night that it might be beneficial and maybe more important that I have effective injections during the night. To cause healing more effectively. That was my hypothesis.

>>I know from past experiences that when I feel sleepy (as opposed to exhausted) it’s because my body is healing. So I am wondering if I am waking in the night and have pain in my hand joints because the nighttime healing mode as you mentioned above was disrupted because I missed some injections?

I have a hypothesis that might explain that which I am working on. Are you still working with the concept that there is storage of B12 as a fact?

>>My current strategy which is the best so far in supporting my lifestyle is 4 injections a day, each approximately 4 hours apart. I am experiencing flexibility in my body’s response to the duration between injection 3 and 4, and injection 4 and 1 the next day, but my body has little tolerance to any shift in the timing of injections 2 and 3 ( so little intolerance to the 4 hour window)

Again. I have a hypothesis that might explain that which I am working on.

Wwwdot profile image
Wwwdot in reply toWIZARD6787

Hi Wiz

Thank you, all so interesting ...

I am working with the concept that B12 storage in the cells is limited (as cells are constantly under renewal) and that B12 is also used to repair nerves. What I have not quite worked out is where the B12 I attribute to energy is from - I suspect that is in the blood (which I think may be come under the cell category).

Since I am so active now, it makes sense that I need a consistent B12 supply during the day but I do not seem to need consistent B12 during the night. I base this on the fact that when I awake and my last B12 injection was circa 10 hours previously, I do not have what I call fast response symptoms (ie a quick downturn) like aches and headaches which I do get if I go longer than a 4 hour window during the day. So during the day, I think my activity influences/diverts the B12 from healing in some way. But at night, there is little activity so more B12 into healing.

I look forward to mulling over your insights, it's a little like doing a jigsaw puzzle without the benefit of a picture!

WIZARD6787 profile image
WIZARD6787 in reply toWwwdot

I would like in it more to having a distorted picture and trying to put together a puzzle based on that.

Wwwdot profile image
Wwwdot in reply toWIZARD6787

That's a more positive and progressive analogy! I like it!

WIZARD6787 profile image
WIZARD6787

Collaboration rules!

Hockey_player profile image
Hockey_player

Now that you can make it a bit longer between injections, it might make some sense to prioritize getting enough sleep? Maybe try injecting just before bed and also when you first wake up in the morning, but skip the middle of the night dose? Waking up enough to inject would be very disruptive for my sleep.

WIZARD6787 profile image
WIZARD6787 in reply toHockey_player

I have been injecting last thing at night first thing in the morning for a long time. I came to injecting during the night in part when I thought the only reason I would not do that is it's odd. For me it is prioritizing sleep just not what is thought to be best for sleep without any justification.

And although I can space out the injections further, it does not follow. That is the best way for me to heal. There is no value to me in injecting less often other than convenience.

Not what you're looking for?

You may also like...

The cause of my B12 deficiency.

The most likely reason for my B12 deficiency is my body uses B12 faster than is normal for reasons...

Error posting the amount I was injecting

I discovered last night I made an error in the amount of methylcobalamin I was injecting. The...

Injecting three forms of B12 at the same time?

Has anyone tried injecting three forms of B12 at the same time? I am designing a new trial and am...
WIZARD6787 profile image

Thinking of self injecting b12, any advice?

Hi there, I'm new here, I was recommended this forum from a fellow person with M.E/cfs from...
blueivy_4 profile image

Self Injecting......

I was diagnosed with PA approximately 4 years ago and have been self injecting for about 6 months...
gizzmo1971 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.