Just checking that my symptoms flare is usual with B12 loading doses. First dose last Thursday and on Saturday I had nerve pain across my mastectomy scar (surgery in 2019), dizzy spells/loss if balance, nausea, and intensifying of my existing peripheral neuropathy in my feet and legs. Second dose this morning and my PN is nasty this evening. I was hoping I would get an energy boost but my fatigue has been much worse with brain fog and sleeping twelve hours a night.
Not sure what can be put down to the B12 and what is just my usual flare up at the change of season and lowering temperatures!
Thanks
Written by
MyrtleMac
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It's quite normal. I and many others experienced the same. More B12 activates nerves that previously werent firing properly, so sensations often become more intense and painful. I also had the dizziness, which took a few weeks to clear and the most horrible nausea. In general its known as early treatment decline. How severe it is and how long until you turn the corner depends on how long you were deficient, the severity of the deficiency and your overall health in other aspects. It could be anything from 4 weeks to as much as 6-8 months in the most severe cases.
You may find my treatment and supplementation guide helpful : healthunlocked.com/pasoc/po... . Important in the recovery to make sure you're supporting the bodys healing process as best you can, to try and smooth the ride... but its going to be a bumpy one for most no matter what.
Thank you, that's very useful. I've had symptoms a long time, over seven years, but neurologists took me on a very winding and useless road. One neuro advised injections in 2015, but it was never implemented. I didn't push partly because my NHS neurologist put it down to viral damage to my CNS. So here we are. I work hard at symptom management though, so your links are very helpful, thanks again.
eat bananas before next injection, your potassium levels could fall on loading doses. My hubby slept for three days and the pins and needles were a lot worse.
It will ease, the first few months are the worse, stick with it.
Having read posts on this forum for over 8 years , it seems to be fairly common , when treatment is eventually started , for symptoms to get worse before they get better (although it didn’t happen to me)
It’s so important for you not to get discouraged. You will win through if you get sufficient treatment. We are all different in our needs and reactions . So keep in touch and tell us how you are getting on . You will always get help and support here .
Thank you so much for this. I'm sorry you had such an awful time, but very glad you came through it. It's hard when I have multiple fluctuating symptoms as a norm to tell what is happening, though the extra tinnitus and nausea are unusual for me. Thank you for the encouragement. I hope things are much better now.
Re mastectomy, there's inevitable nerve damage across the incision scar which was quite bad the first year but had calmed down - it's now flaring lots after injections. But that looks like a good sign, if the damaged nerves are being woken up...I hope!
Between my second and third loading dose I had only what I could describe as taser-like attacks every twenty minutes, for close to twenty-four hours. Intense pain and had to pace for hours, could not lay down or sit.
And then these taser-like attacks left as quickly as it came.
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Around 80% of my over thirty symptoms left after loading doses..
Magnesium might help while you go through this period.
I'm thinking a response is hopeful - means repair is possible. Can take a while.
So many times I thought that there might be "something else" to be found as I seemed so unresponsive to B12 injections. Nothing else ever was, except "B12 deficiency" changed to "functional B12 deficiency" by having MMA (methylmalonic acid) tested. Finally, I got the frequency of treatment I actually needed: 2 injections a week. Then people started telling me I was getting better, looking well again. Friends, family, work colleagues - and GP ! So she continued with this frequency.
After 3 months, I actually knew when I'd had my injection, and stopped having to ask "have you done it yet ?" 23rd Dec. 2016 - I remember thinking of it as a Christmas present. As you can imagine, I was delighted.
I really wish you well. Hope you are getting monitored for folate, ferritin, thyroid and vitamin D. Not just whether in range/not but direction of travel important for pre-empting any problems. I was found to have osteoporosis of the spine. My folate and ferritin took a while to stabilise at healthy levels, too. All of this now under control. Even osteoporosis now reduced to osteopenia !
That's fantastic news about the osteoporosis reversal. I had bloods drawn at the GP today to do a general panel, including folate and ferritin. I'll nip them about VitD yearly (private tests showed deficiency a few months back despite daily supplements, a problem I've had for years). I'm so happy to hear how much improvement you got!
What is really good about this support forum is that those further along can help you to see that you can get improvements, what to ask for, what to expect, what not to do. What is also really good is that we start to look back on our own progress, get a better perspective on how far we have come.
Hope.
I needed about 14 hours sleep, just to get through the day. If I went to the supermarket, it would cost me: usually a 3 hour nap, as soon as I'd shut the fridge door. I was so desperate I'd be literally throwing the food in !
Now, about 8 or 9 hours' sleep is enough. Going to the supermarket still costs me a fortune - just not in sleep time !
I too got worse before I was better and fortunately knew about the healing process. I did keep a diary but the day after 5 th injection, rudely awoken at 5 a.m. as had bizarre and painful sensation which I could only describe as feeling like my mouth was being stung by bees !!
11th injection, my head was so painful and full of static. I just lay in bed most of the day. My thought was is this what the inside of a television feels like.
Oh lord, that's horrendous! I'm so so sorry you had this reaction - did it subside? Today I've had patches that feel like I'm kneeling on a bed if nails but it comes and goes and to be fair my neuropathy is painful all the time. I'm hopeful though that this might mean it's working
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