Ive upped my b12 injections to every 6th day from May.After a year of 2 weekly. I'm finding on the day before injection too weary and flat mood on top of ongoing head symptoms. Glasses clamped. Pains yo the back of my head that sometimes turn into a headache. Still unable to read a book or watch tv. Can tolerate the loud speaker on the mobile at times but not the landline?? injection day brings more symptoms tinnitus nose numbness blocked ears vision down. Today lead kegs back. Nausea. I'm unsure whether to continue for a bit longer on every 6th day ?? I'm over the worst of my tooth extraction as nearly 6 weeks ago. Still some healing of socket but jaw pain much better. The improvement I have found despite other symptoms I'd the weakness has improved. I can stand for a bit longer and not aching as badly. I suppose we always hooe fir more on a new regime. I even got my bike mended and serviced on a more positive day as I found a local person to collect it as set up a small business. Woukd lovevtk ride that again one day. I'm feeling quite detached again like everything going on around me . I suppose that is a reality.
Any thoughts on my regime please share not quite sure of what I'm doing at present.
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Nackapan
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Hi Nackapan so sorry your suffering like this.from my own experience all I can say is I’ve tried extending the injections as long as I could and really did myself no favours.as soon as I reduce my frequency the symptoms cme straight back then when I relent and start to inject again they really ramp up and the pain and burning in my feet and legs feel like I’m back at the initial loading doses phase.My head feels like a band around it tightening up and the vertigo and panic or anxiety all magically reappear,then the day after that shot it eases and once I’m into a week or so of alternate day injections again it all eases off gradually
I wonder if your like me and need high alternate days injections to flood the blood so hopefully more trickles into the cells?
I've increased the injections as was on 2 weekly for a year. Before that weekly and Before that i was on every other day . This over a 21 month period .
Perhaps as I've increased the frequency it's the same as you are describing as bringing back 'old" symptoms as well as ongoing ones. ?
I'm not bedbound or as ill as i was in the loading months .
I think I will stick with the higher frequency im on for now and make notes...again. I'm trying to stay positive as a reaction to a injection usually means it's doing something ?? I've never reached the maintenance level. I suppose ive doubled the frequency . Perhaps I increased risk quickly...who knows . I'm doing it now .
Thankyou again for your experiences I need those to pick through and try and make sense on whars going on again. I know some anxiety is creeping in as i thought I'd be able to tolerate more artificial light by now .Also wanted t8 ne there for my daughter whi is expecting het first baby . Not even got to her 'new' house yet. She moved in September last year.
Last winter was extra miserable as had to be on the bed by 430pm when the light went as coukdnt get round the house . And without anything to do was a very long evening.
I have to stop talking and sit in a quiet aromatherapy bedroom with lavender puffing out lol. I also use this roll on stick I was bought that cools the forehead. A cold or warm t towel at the back of my neck can help. I've tried a heated lavender bag but too heavy so a mask shall go on the shopping list. All these symptoms are so odd and all hard to explain. Im forever distracting myself from them to make them bearable. I really got what you were saying about positive some days and making plans ans another cant quite puf your finger get on why you canr get out for lunch but know you cant.
One day I booked my bike in fior a a new tyre and service thinking one day I will be on it. Was brought up without a car so cycling is second nature to me.
Today i think what on earth was j thinking off . I also realise friends / sister even not including me or making contact . I've tried to explain as very sociable I will if i can and do if I can but very limited .Just going on for so long now.
So isolating . No different in shutdown for me really. Once we can all be more mobile I think it will expose 'where we are ' what we can try and do.
Hoping but trying not to raise expectations on neuro Opthalmologist appointment still on hold . Might have some reasons/tests for Occipital neuragia ect. to explain symptoms.
Onwards and upwards I say daily . I will improve I sat daily.
Rambetling now and head sizzling like bacon in a pan. T c
Yes I get what your saying about the sociable side of things and like you self isolating wasn’t a problem for me as I see no one anyway.I have all this family but have never felt so lonely and excluded.We can’t help that feeling of overwhelming terror we get right out the blue when we are supposed to even just meet up for a cuppa,we’ve all lost careers and friends because of it but thank god once we start to get the correct diagnosis and start treatments it suddenly starts to look brighter for us and we can make plans again on our “good days”.
I was due to go to France in a couple of weeks all booked up and prepping away in the background and it felt like a major achievement for me but now it can’t happen because of quarantine rules being brought in.i was lucky and managed to change dates to November but that’s a long way away for me and I’m hoping things keep improving
You can buy the masks from boots or amazon but don’t get the microwave ones they’re very dangerous I had one burst and burnt my fingers badly thank god it wasn’t my eyes.
Get the ones you heat in a jug of hot water then you can control your heat levels better.x
I've got a few aims to get to my daughters 45 miles away .
To get on my bike for a very short ride.
Once able /safer to get on a train. Was once very independent .
(My husband doesn't drive.)
Hope you get to France. If you dont you dont. Another time. We had a mini break booked for us last year for our 30th wedding anniversary. We got 2 more kittens instead lol that needed a home.
I find a plan can feel like a pressure so try not to think about it.
Yes alot of losses. I've found neighbours more caring than some of my oldest friends ? Even a text if theve not seen me out of the house. Best I've ever had. I've helped out in the past but that dorsnt always make any difference . There is a woman who I've seen deteriorate with MS across the road. I visited her a couple of times before shut down as she wanted me to. So we text a little now too.
Hopefully as we move forward with better health we move forward with those that bothered and reserve a little time for those locally that arnt moving forward . I moved to help my mum !! Well I still micromanage .
Hi nackapan, sorry to hear about you dips. I started injecting every other day at home last sep/oct. It really helped. I wanted to use trial and error to eventually have longer between doses.
By Christmas, two injections a week seemed to work well.
In february I was prescribed Creon as I have some issue with producing enzymes that are needed to get nutrition from food - this may or may not be connected to B12 deficiency.
By March I was on one injection a week but towards April I kept forgetting - no symptoms were appearing. Great! I was able to go four weeks without injections then by June I went longer - 5 or 6 weeks without injection and it all hit me again.
I had to go back to every 2 days, now I might be able to go for three days but no longer. I expect to dose like this for a good 4 or 5 months before contemplating weekly.
It is frustrating, but at least the injections are helping.
The biggest gap was 3 weeks on 4 occassions after restaring loading doses in Dec. 2018 .I'm sticking with every y day at present as that's double what I was having for the last year (2 weekly)
I done know if reacting badly to an injection a sign of more repair or I'm overwhelmed with the flood of b12 ??
I never forget injections !
Just sk confusing ad inreslly thought upping frequency would help. My head gives the worst symptoms at present . Tinnitus ,skull pain, vision down, hurts to move around . Like I'm in a goldfish bowl. Teslly thought the drol in temperature would give relief too.
Yesterday wad feeling poorly and simply dud not know what tk do. I walked round the block. Body quite strong. Head sore sat down on return and fell asleep in a horrid way I cant even remember. Woke uk felling horrid .that's night happened for a long while. Feeling drugged today and so it goes on.
Sounds like if you stick to 3- 7 day "frequency it may help.
Alot find if they try and make the Gos bigget and bigger hey have to up them again.
I've done it si slowly. Every other day for months then weekly then 2 weekly. 3 welt worked once and I thought that suited me. Bug no. I've still not had a few hours symptom free yet. I'm forever distracting myself from pain mainly in my head. Thars tiring in its self.
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