Sc b12 injection then 10 days another then 10 days IM at the surgery.
Was on 2 weekly IM. Have a tooth that needs attention ad nerves exposed. No treatment available as not an emergency . Was making tiny improvements as long as I didnt do much. Day 5 after sc injection. So fatigued . Balance awful. Jaw scalp pain/nerves 'on fire's is quite usual un fortunately to get like this just before sleep/bed about 1900hrs.
All I did different wa to wash the garage door. I know a strange thing but quiet and wet for distraction as cant read /tv and too weak to walk round the block. Aks8 'using up 500mcg b12 capsules I'm taking each morning . Today after putting 8 things on the washing line and havi g breakfast I can barely stand. Scalp tight tinnitus. Inner shake. Si keeping still on the bed. Usually if I carry on quietly things improve. So tempting to have more b12 but not sure whether to stick to regime a bit longer . IM injection due next Wednesday at the surgery.
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Nackapan
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I think you need to listen to your body Nackapan and increase your frequency of injections it’s crying out for it by sounds of it,no one should have to go through their days like that I can’t see why your so reluctant to increase you know it’s not going to harm you,don’t you think it’s worth a trial to see?
I hope you do decide to trial it’d be lovely to see you on here in a few days saying your much improved.
Just my opinion I’m not telling you what to do but I know if I was suffering like you obviously are I know what I’d do.take care x
I suppose in my mind I had every other day for months then weekly then 2 weekly . I tried to go 3 weekly but feels though I failed.
I suppose I feel like it's a backwards step.
One thing for sure I'm not absorbing anything from an oral source.
I thought as much but tried again as I've got them and expensive.
Thus is propabkr the clearest sign I've had as usually my symptoms si all over the place its hard to tell.
Weakness
Fatigue
Off balance
Falling asleep
Tinnitus
Jaw and scalp pain
Cramp
Burning fingers (a first I think)
In a way I've I've 'classic ' b12 deficiency
Symptoms
with less brain irritation headache/migraine which I wondered if that was post concussion syndrome in the mix. Only one out of 3 neurologists thought that . He was the one that thought I was addicted to b12 but didbr put that in the letter to Gp.
Writing this reply has made it clearer thsnk you. Perhaps this is a ight shift in the right direction.
Oh I hope so as I'm finding it so difficult at the moment and need a break
Usually I make a plan then stick with it.
I now realise i have ,,,as started on 25th March!! 🙄
If I do one today it will be 7 days until my booked one at the surgery and last one
Saturday so actually 6 days ago.
It's like talking aloud .
Thank you for your timley reply .
I will change to weekly for a while and see what happens.
So sorry the tooth will be pulling you down too have you tried the fillers you can buy from chemist just to cover it or try rubbing some sensodyne toothpaste around it to reduce sensitivity maybe.
I think you need to go back to every other day at least with your shots and I think you know that and just need to hear someone else say it.
Take care and just trial it you can stop any time you please as you have the resources there to inject or not don’t you.Xx
Nackapan - you are describing me when I tried your regime - I went back to zero and started again. Every 2 days, then every 3 days etc till it was weekly then onto 2 weekly, by this time I am on the floor. Started again every 2 days then 3 by the time next jab was due I began to feel things stirring. Ended up on twice weekly with an extra jab if i feel I need it. Hope this helps
You may be using the wrong type of B12 for your body. If you are sensitive to caffeine then B12 methylated versions will worsen your symptoms. The other problem could be that you are using too much and why injections often does not work for everyone. There's a lot of information on the Ray Peat forum.
Yes maybe . Sometimes I think I need an I jection but then the next day a bit better without having it. My symptoms have been so severe and erratic for 20 months now with no pattern. I make copious notes . Vitamins ,activities(walking round block) not been out for a day or anything even when we could. ) I've found it difficult to know. But yes today was clear so have injected and hope to pick up. I didnt realise how clear until writing it down. My head pain is always present in some form.
I definitely find that sometimes I’m not sure I need the injection (I have them Tuesdays and Saturdays). But I’ve learned from experience that if I delay for a day I then have a real dip which can take me a week or more and a few injections to get past. So I don’t experiment with trying to increase the gap between injections any longer.
I was on every 2 weeks for a year. Tied 3 weekly a few times in that period as under pressure from Gp to try alongside oral tablets. I showed willing.
Then every 2 weeks continued. Decided on weekly in March but was very ill. That's how I got to every 10 days.
It's been 6 days since last one and booked in for IM on Wed. So in 7 days time.
So hope to move on.
I thought a regime would be easier to work out as in such a routine and no visitors ect. Or getting to doctors or hospital appts. Just walk round the block . And limited stuff around house.
When we went into lockdown, I went without an injection for 2 months. Gradually things went downhill, my balance deteriorated resulting in several falls.
I have now gone back to my regime of fortnightly and balance is restored and no more falls.
I also adjust my supplements, trying to work out what helps. I did manage to tolerate Solgar gentle iron for a few weeks.
Currently, I only take vitamin D3, B complex and a probiotic daily.
I am totally self managing, apart from seeing my neurologist annually. He does blood tests but in between I have them privately.
Glad to hear that you have got a dental appointment !
The trouble with having to work out everything for yourself is that any deterioration or improvement can be such a gradual change. If you alter anything - add supplements, alter frequency of injections etc. - the impact will take a while. Makes it hard to recognise for what it is. So you need to change things one at a time, and monitor closely and simply.
A chart rather than a diary probably.
If you list all your symptoms, there will at this point probably be so many that it becomes confusing. Take the Key 10 - maybe the worst ones, or the easiest to monitor, or the most visible (so GPs/ consultants can recognise them too/ photo can be taken) or a few of each.
Then dates. Every day, mark which symptom/s you have had, maybe score severity or just a dot will do. Also mark down when you have had your injections.
This will give you some indication of whether the injections are making a difference, whether more injections give you better results, how long it takes to get an improvement, and how long it takes before the injection becomes less effective. This can also be helpful for appointments and consultations - although be aware that some will see this as obsessive. This is because they don't have to live with this, or answer questions like "when did this particular symptom start ? " or "how long does this last generally ?" The good thing is that you get to decide which particular medical professional to show this to, and when you wouldn't bother.
This is hard work, yes, but this is a long-term experiment and there are no miracle cures (yet). I have 10 key symptoms on my list - 4 are now rare and 8 are less severe. Good to look back now and then !
There is a balance to be had. I'm still working on mine.
My short-term wish for you is that your dentist gets rid of your toothache. (Without nitrous oxide - get that put on your record !)
My long-term wish for you is that you find your balance. Can I have two ? Then "a good GP to help you find it" would be my second.
I've made a sort of chart as diary too full and not clear enough.
Just counted . I've 27 symptoms on the list. I've been putting a number each day by each symptom. The number is say 1 as day of injection . I started this with 1o day Injection regime.
Now on weekly as Injected yesterday .
I will from that I think be able to shorten the list as some have 17 dots/ numbers and sine 3!
It does feel obsessive and it certainly wont be shown to my Gp. She is confusing me as I think she understands but then says something then I realise she trying g ti get me on duloxetine now.
I read up and if I really thought it would help would try it . However it dosent feel the right thing to take and I am hoping to gi drid free when my neuro Opthalmologist appointment is able to happen.
I'm really hoping at present it's my tooth .
A month is a long time to have been dealing g with it.
I dont actually care if they extract it or manage to put a temporary filling on.
I was making tiny improvements. I actually wrote in 19/5 okayish day !
So yes I think you are right . I will reduce the symptoms on my ' chart'
I do make a record of vitamins I take . Iron ect . My food is good but reduced chewing and tooth pain may have added a few symptoms.
My okayish day does include head pain weakness ect but of the sort I can deal with. Thars when pacing works
I'm no where near functioning with enough data like that. My expectations have reduced. I am realistic.
It just feels relentless at present.
Thank you for your ideas.
Also for reply.
Will write Nitrous oxide down now to take with me. !!
surely you need more frequent b12 - its not right that you should feel so poorly. I notice you added tinnitus - I have this too but most gp's will say that it is not a sign of b12 deficiency. I KNOW it is and always have it in the lead up to my next injection.
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First SI, the pain, ouch!
B12 infusion or Injection?
