My Stuffy Head II: When I first read... - Pernicious Anaemi...

Pernicious Anaemia Society

32,679 membersβ€’24,077 posts

My Stuffy Head II

WIZARD6787 profile image
WIZARD6787
β€’25 Replies

When I first read about people topping off/up in my ignorance believed that clearly they did not understand how B12 injections worked in the body. I came to marvel at the ability to 'just know'.

With 2 mg every 4 hours during the day and injecting if I wake up in the night I am now one of the cool kids and can tell when I need more B12.

The way I can tell is my head gets stuffy. That is right now the first sign where prior it was teeth pain and was not alleviated quickly by injecting.

I get a stuffy head in about 6 hours and some times at the end of the day prior to my next injection.

Yesterday was a good but arduous day. I started to get a stuffy head late in the day and considered moving up my injections. I chose to wait the 1/2 hour. In 20 minutes after the injection the stuffy head was all but gone and in 40 was alleviated. So now I am one of the cool kids. πŸ™‚

In hindsight the reason I could not tell when I needed more B12 is I did not have enough at the frequency where my body could tell me that I needed more. It was always starving for B12 and starving a bit more was not that dramatic.

Written by
WIZARD6787 profile image
WIZARD6787
To view profiles and participate in discussions please or .
Read more about...
25 Replies
β€’
ACritical profile image
ACritical

I just wonder… I/we, so many of us, started with EOD B12 injections and that gave me my life back for a few years, then after being ill with a terrible flu- bout( way before Corona) , I needed the loading injections again. And since then, those loading ones, more often for what ever reason. Not being able to stick to 1 EOD. Does it mean the more we think we need to top up to feel ok we actually set something in motion we can’t stop unless ….. In the end we have to realise it can’t be the solution…. It might give you a time span where you manage to function for awhile however that time span is also getting shorter and shorter in the end as the EOD injections did.I haven’t got to that as yet and actually I don’t want to. I have to think things over before there is no return from it. I once ended up in hospital with a medication poisoning, just followed the exact amount my GP / consultants prescribed…. So no overdose !!! A toxic mix! I was taken of all those medications and I am still on No medications πŸ’Š what so ever apart from ibuprofen/ paracetamol occasionally. I am just taking my B12 / and sometimes B2/ B9 injections and the co-factors as supplements, which I know are way safer then actual pharmaceutical medicines. My vitamin B12 injections are the most frequent. I know I need to bring the forever more and more spiral to a stop and get myself back to basics somehow as I managed before. That’s where my journey is going to go. It will be hard and perhaps damaging as well…. I am 72 and all faculties present however finding myself still on that damned tight robe to keep on going!

WIZARD6787 profile image
WIZARD6787β€’ in reply toACritical

Hey Acritical,

First I believe the loading dose concept to be from over a century ago, not scientifically proved to be more effective than EOD. In fact the EOD protocol calls for 1 mg EOD as a loading dose.

I too was poisoned with medication and do not need any now but always do the work online to check the physicians work. I also have the pharmacist check. The pharmacists in th UK are better trained that in he USA.

>>Does it mean the more we think we need to top up to feel ok we actually set something in motion we can’t stop unless …..

That is certainly a possibility as B12 deficiency is not well understood. Much is known about B12 and much is thought to be known about B12 it does not follow there is an understanding.

B12 is often touted as perfectly safe when in fact it has no known toxicity or any upper limit where it causes symptoms. This is drawn from the fact it is used short term for cayonoid poisoning and there are no known cases of harm from B12. There is no data on long term use effects. That is the reality for many medications people take. There are always unknown results that cannot be measured.

I did run a trial of reducing to see if my symptoms came back and went away when I went back to former levels. That is what happened.

For the last 8 months I have been working with the principle that my body uses up B12 at least to some degree in hours not days and gradually increased to 4 to 5 times in a 24 hour period. The results are very positive.

Recently I have been working with the principle that my body adjusts to the amount of B12 available at the cellular level and that becomes the new normal which does not mean adequate only that it seems normal to me. And that it is possible that I need more frequent injections.

So pretty much I injected more often and then healed and increased and healed to a higher degree. I did establish to my satisfaction that too much B12 at a frequency of 4 to 5 times a day caused to much healing for then and I needed more rest and sleep than was sustainable. I will do a trial at that level in the future as my body heals which is now measurable to me weekly.

ACritical profile image
ACriticalβ€’ in reply toWIZARD6787

Thanks for explaining how you see your reaction to the use of B12 injections. I am going to introduce Methylcobalamin injections to my regime as soon as my order arrives. I have been using Methylcobalamin in liquid form under my tongue, it does help and it gave me the idea to try injecting. People on this platform, including you, have helped me along greatly, without all of you I might not have preserved. I seem to have more positive days than many of you and I have my migraines under control, they are never as bad as before!!! For that I am so grateful. Only I feel I need more and more just to stay still , like 2 steps forward then one back again, in my case 2 back again. So I know my regime needs tinkering, even overhauled perhaps if I want to stay actively involved in my life with my family and friends. I will stay in touch to read your story and let you all know how I manage to get along.β™₯️

WIZARD6787 profile image
WIZARD6787β€’ in reply toACritical

FYI. If you are getting methocabulamin from Oxford laboratories. Beware, the concentration is higher. As I remember two milligrams per milliliter. I made the mistake of not noticing that and it affected my calculations about what to do and what I had done.

I would like it if you stayed in touch.

Wwwdot profile image
Wwwdotβ€’ in reply toACritical

Hi ACritical

The way I look at it is that we don't stop eating after one meal, nor do we eat enough for three months and then eat noting! That's because we need constant fuel for our bodies.

We have depleted our B12 store and even if it was full we can't access it as our B12 system is broken. It would be illogical to stop eating regularly, so by my reckoning (and my body's positive response) it is illogical to not have B12 regularly.

Our appetite for food ebbs and flows and so why should our body's "appetite" for B12 not ebb and flow also?

You have said "I know I need to bring the forever more and more spiral to a stop and get myself back to basics somehow as I managed before." This is interesting because this assumes that your body's need for B12 NOW is the SAME as it was BEFORE. But what if it isnt? My experience is that as I get better and more healing and repair takes place, I get more active which creates a need for more B12.

I can think of no other "acid test" to check for too much B12 (which for me is having reached the enough plateau) other than to reduce it and experience no ill effects. I do this regularly and the outcome is flu like symptoms, anxiety attacks in the night, or achy teeth all of which disappear when I resume my B12.

I hope also to find that one day I can reduce my B12 but I am convinced that it can only happen when my body has fully recovered from years and years and years of B12 deficiency. I am only into my first year of recovery and the consultant estimated that I had been deficient for probably 20 years - so I might plateau when I am 82! I will put that date in my diary 🀣🀣🀣

πŸ€—πŸ€—πŸ€—

ACritical profile image
ACriticalβ€’ in reply toWwwdot

Thanks Wwwdot. You might well be right. Only, for a period of 15 years , 2 years very regular injections to get me the feeling back in my legs and feet. I don’t need aids anymore to walk, I even for awhile could jog on my treadmill. I got a virus and then things went pear shaped again for me. Back to loading more regularly and I just never got back how I felt before that virus. Not so long ago I was back using a walking stick again when I had my first covid infection. Spend 3 weeks in the winter sun with antibiotics for my pneumonia and back loading the B12 again, Vitamin D from the sun repaired me again. Came back and was alright for awhile until I got COVID badly again early 2023, again pneumonia even tough I had a vaccination for this. I stopped the boosters since then. My husband says it makes me weaker, not being able to fight infections as well as before. I don’t know if it is true. I did take the flu jab . Now trying to get some sort of balance in my health , trying different ways.

Wwwdot profile image
Wwwdotβ€’ in reply toACritical

Hi ACritical

It certainly sounds like you are on a roller coaster health wise and that in itself is so tiring! So sorry to hear of all the hurdles that you have had to navigate. I should add that almost certainly a drain in B12 is when your immune system is on the offensive. My mum was unwell with a bug and I noticed that I was more tired than normal and apart from the stress I think it was also my immune system fighting bugs. But I am no expert.

I can only offer my limited experience of B12 over the last year and I have gone from being a bed bum to almost being my usual mad self!

I still have the overhead of thinking, observing, analysing and managing my treatment to maximise my health and it can be too much and overwhelming at times. All I can say by way of encouragement is not to give up and to keep seeking a better health pathway. I’ve kissed a lot of frogs in my search … I hope to find my princely health path one day. Good job I like frogs ! 🐸 🐸🐸

πŸ€—πŸ€—πŸ€—

Darkvarnish9 profile image
Darkvarnish9β€’ in reply toACritical

I noticed that you felt the sun made you feel better and wondered if perhaps you have a vitamin D deficiency too? They go hand in hand with B12 and are thought to help protect from COVID by some doctors. I hope you feel better soon.

WIZARD6787 profile image
WIZARD6787β€’ in reply toDarkvarnish9

I take D3 and K2 in the winter. My body uses sun energy for more than D that is why I use the term sun deprived.

Mixteca profile image
Mixtecaβ€’ in reply toWwwdot

That's a question I didn't ask him- how long had this been going on?

Wwwdot profile image
Wwwdot

Hi Wiz

I relate to what you describe as your "Stuffy Head".

My family call it my "Queen Bee" impression - apparently I start to go round and round in circles on the spot whilst trying to think about what I was supposed to be doing!

My Queen Bee /Stuffy Head times are getting less frequent now and ALWAYS occur when I am out of the 4-5 hour window since last B12 . It is particularly noticeable if I get out of bed and get on BEFORE my first injection of the day - I am so ineffective and I often don't realise it until something jolts me into "Think B12" mode!

πŸ€—πŸ€—πŸ€—

WIZARD6787 profile image
WIZARD6787β€’ in reply toWwwdot

Mine is not so much cognitive as just physically my head feels stuffy.

Wwwdot profile image
Wwwdotβ€’ in reply toWIZARD6787

Hi Wiz

So is your stuffiness nasally whereas mine is cognitive?

πŸ€—πŸ€—πŸ€—

WIZARD6787 profile image
WIZARD6787β€’ in reply toWwwdot

Not nasal. My head just feels stuffy and I don't notice any cognitive effect.

Wwwdot profile image
Wwwdotβ€’ in reply toWIZARD6787

Wiz

Sounds really hard to describe!!

πŸ€—πŸ€—

WIZARD6787 profile image
WIZARD6787

Feels like if I drilled a hole in my head and put a vacuum cleaner on it that would take care of it.

LorraineQ profile image
LorraineQ

Hi, I know when I needb12 as I break out in little spots anywhere on my body

Wwwdot profile image
Wwwdotβ€’ in reply toLorraineQ

Hi LorraineQ

That sounds very unpleasant. How often do they appear and how quickly do they go away? How often do you inject?

In the early days I got spots mainly in my hair and in my face but seldom now.

πŸ€—πŸ€—πŸ€—

LorraineQ profile image
LorraineQβ€’ in reply toWwwdot

I get 3 monthly injection and by the 2nd month I break out in like little hives, they are filled with water , itchy and if I scratch them they scab over and leave little red marks for ages.

Wwwdot profile image
Wwwdotβ€’ in reply toLorraineQ

That sounds so horrible - what does the GP think causes it?

πŸ€—πŸ€—πŸ€—

MrsHappy profile image
MrsHappy

Hi

I know exactly what you mean by a stuffy head. Mine was terrible for years and went away after my two monthly B12 injection only to reappear before the next was due.

A Dr I was chatting to suggested I try a Betaine Anhydrous tablet to see if it helped. Surprisingly, yes! He mentioned that it lowered homocysteine which can cause the brain fog. Maybe it can help you? Best check with your Dr first!

Wwwdot profile image
Wwwdotβ€’ in reply toMrsHappy

Hi MrsHappy

That is interesting as I take Betaine. Thank you for this little gem I will look into it more closely.

LOVE your user name!!

πŸ€—πŸ€—πŸ€—

Technoid profile image
Technoidβ€’ in reply toMrsHappy

also known as trimethylgycine (TMG).

Katherine123 profile image
Katherine123

Hi Wizard, I am slowly being drawn into your way of thinking. I was left B12 deficient for a number of years due to our NHS. I think our body gives us personal clues. Mine is a vibrating in my ears or in my head, not sure whether it is ears or head and a weakness comes over me and my brain goes on a go slow, does not work sharp. I need a sharp brain for my job. I self injected for the last 4 years. Started once a day for a month, then went every other day. A year ago I thought I am ok to go twice a week now. I still have the numb tingling feet and they discovered I have white matter on the brain through an MRI and some degeneration of the spinal cord. My reasoning was going twice a week was I must be at that stage on not getting any better. My ataxia was so bad before I starting getting B12 it was like walking on a rolling boat. I have had 18 months of very ill health with reactivated Epstein Barr and strep B, tonsillitis too. I had to be hospitalised as it was so painful I could not even swallow water. I had to be on iv drips and 4 lots of strong antibiotics. Antibiotics and dentist injections always take my B12 down for some reason. I spent 7 days in hospital, no B12 and when I got out I did an injection and felt stronger within the hour. Then I went back to my twice a week injections. Last week something in me said why not try twice a day. I kid you not my brain wanted me to have me running up the stairs (I use to always run up stairs). I could not do it because I have loss so much weight being so ill that all my muscles have disintegrated. But my brain thought it could do it! My brain was also very sharp. I have no idea why I gave that up after 3 days, I possibly do, it's the chore and having to be reliant on something. You have inspired me to start the twice a day injections again and to see how I go :)

Mixteca profile image
Mixteca

So great you've reached this understanding of your body's needs Wiz.

I cannot tell if my body needs more or less these days, since my symptoms have never gone - they've become much more intense in fact, regardless of what I try to do for the best chance of recovery.

Not what you're looking for?

You may also like...

Error posting the amount I was injecting

I discovered last night I made an error in the amount of methylcobalamin I was injecting. The...
WIZARD6787 profile image
β€’

Antibody to transcobalamin ii causing functional B12 deficiency?

Summary: I require very high dose/frequency B12 injections just to avoid neurological...
jeremycat_ profile image
β€’

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...
WIZARD6787 profile image
β€’

Bad dreams...

So I started my treatment from 31st March 2021 , I was injecting every alternate days for 10 days n...
Akashrajput profile image
β€’

My Current Regiment of Administering B12.

With the sublingual of total 15-20 mg a day 3-4 doses my brain fog changed to 'brain haze' I could...
WIZARD6787 profile image
β€’

Moderation team

See all
Foggyme profile image
FoggymeAdministrator
Gambit62 profile image
Gambit62Administrator
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.