Lesson Learnt - back to 4 a day

[Wwwdot]

Hi guys

Happy New Year!

Pre Christmas I was injecting 4 x 1500ug every 4 hours and doing well with virtually no symptoms other than painful hands and I had a sensible amount of get up and go.

Over the Christmas and New Year holidays I was relaxed pottering around the kitchen and home and my body did not SCREAM when I missed some injections. So quite a few days passed when I only had two injections a day. New Years Day I started getting backache so I resolved to go back to 4 a day which I have been doing for the last couple of days.

But interestingly yesterday I had facial neuralgia which I haven’t experienced for months and my lower back is aching more than ever. The tinnitus today is loud and I have a headache and achy teeth again, all symptoms which had been absent for the last few months.

So I conclude from this that with only two injections a day little deep healing took place and whilst I did not feel any adverse effects immediately I am doing so after a few days. So clearly my body is still healing and enjoying 😁 four injections a day.

🤗🤗🤗🤗

[Rexz]

Wwwdot

Great you are listening closely to your body. It will find a way to "yell" loudly, or sometimes very subtly, at you when it needs something. We've only to pay attention and listen.

Cheering you on from way over here across the pond! Rexz

[WIZARD6787]

Good on you!

[Mixteca]

Go dotty! 😘

[Wwwdot in reply to Mixteca]

Thank you Mixteca

Who would have thought!!

🤗🤗🤗

[Mixteca in reply to Wwwdot]

It's great that your body's speaking a language you understand, unlike mine xx

[WIZARD6787 in reply to Mixteca]

That resonates. I used to marvel that people could tell when they needed more B12. Now that I self-treat with injections every 5 hours I now get instant feed back from my body with regards to B12 injections. Well within a couple of days.

I feel my neurological system was not sending or not receiving the signals rather than I could not be aware of them.

[CobaltLab in reply to WIZARD6787]

Hi. I have neurological symptoms and have been SI intramuscularly EOD with Hydroxocobalamin for the past month. I haven’t noticed any changes. Do you SI intramuscularly or subcutaneously every 5 hours?

[WIZARD6787 in reply to CobaltLab]

SC

[Wwwdot in reply to CobaltLab]

Hi Cobalt

There are several variables to consider other than the injection method such as type of B12 and frequency.

Have you considered increasing the frequency to see if the neurological symptoms improve?

🤗🤗🤗

[EllaNore]

Good to know this wwwdot. Thank you. Glad you are back on track. 🦋

[brenanddave]

Hi there! I was interested to hear you mention you have sore hands. I find ir hurts to pat my dog and cat. Is this what you experience. Sorry! I am still trying to understand some of the weird symptoms I have with this disease. I have Alodinia symptoms that dont seem to be going away.

[Wwwdot in reply to brenanddave]

Hi brenanddave

No need ever for Sorry!!!!

I find my hands cramp quite quickly if in one position for example holding my phone or holding an implement. I also find I have less strength in my fingers so opening jars and bottles can be a challenge. Sometimes, my hands just ache for no apparent reason - tends to be the right hand and the right side of my face, under my right arm is where I get neuralgia.

I sometimes get painful hair for no apparent reason and even lying my head down is uncomfortable but not had this since in the early days when I was very deficient - last time I experienced this was when I was on two a day injections. But I do know what you mean.

I find that sometimes, I cannot stand ordinary noises as they sound much lounder and harsher than they really are so that is the only way I can relate to Alodinia in terms of touch - is there such as thing as Alodinia in terms of hearing I wonder?

🤗🤗🤗

[G_Jones]

Hi - I currently inject 1500 every day - sometimes increasing to twice a day - & can't be sure it makes a difference - I never had a formal diagnosis - but started injections over 2 years ago & generally have been feeling reasonably fit (much better than pre-injecting) but recently - probably 3 months or so - I have been more "off"... So - I wondered if you had ever been formally diagnosed..? & what led you to try the much increased dosage..? also - what other supplements if any you also take...?

I have sometimes been tempted to increase dosage substantially - although the cost is the problem for me - I had always hoped to be able to reduce the burden over time - but not if I cannot function...

I guess the other thought I (maybe many others) have is whether my condition and health issues are something else entirely different & more serious ... unfortunately the GP's are not really much help - the GP thinks I may have angina....

[Wwwdot]

Hi G-Jones

Great post. Cost is always an issue - it is for me too and I have had to make economies in my life but I think I am worth it!🤣🤣🤣🤣

Regards the question of cause and effect, I find that my symptoms respond to changes in B12 quite rapidly and I keep a journal of doses, supplements and symptoms as well as days of unusually high or low activity. In my case I can often find a strong retrospective cause and effect between symptoms and B12 dose.

You may wish to consider keeping a journal if you don’t already for a couple of weeks then increasing to one a day and see what happens. Amongst many other improvements sleep has been a huge win for me - I went from being a permanently exhausted insomniac to fitful sleeping, to odd hours sleeping (ie 4 am to midday) to now being “normal” ie 11 pm to 7-8 am - often not waking up or if I do going straight bs k to sleep.

I live in the hope that I will be able to reduce B12 injections but whilst I am experiencing positive benefits and experiencing a return of symptoms when I forget or try to reduce injections prematurely, I will continue to dose as I cannot counter or entertain being as I was this time last year. I am encouraged that I will plateau and be in a position to start reducing doses one day because this is the longest time at 4 a day that my body has not called for more after a few weeks at a higher dose - I hope this is making sense!

Regards angina - I have had three ECGs due to heart issues - one as an emergency admission to A&E - no obvious cause for chest pains - I think it was B12 D as 🤞 since on 2 a day no chest pains or heart issues at all.

I hope you manage to find a health plan than works for you

🤗🤗🤗

[G_Jones in reply to Wwwdot]

Thank you for your reply - it is appreciated...I do keep a log of injection frequency + all the other supplements I take - it's really difficult to know what other vitamins / minerals etc I need to take - & even more difficult to get blood tests to monitor levels... (I also sometimes wonder if recommended dosage ought to be adjusted to take account of my low body weight)

Are you able to say if / what other supplements you take alongside your B12...?

The establishment say you should be able to get all you need from a balanced diet... there's the problem for me - my diet has diminished over several years due to gut pain issues - I stopped gluten some time ago - then dairy - & avoid sugar - just so difficult to reach a good balance...