I recently had a seizure which ended up with me spending the evening in hospital and now awaiting an appointment with a neurologist at a regional teaching hospital. I was fully unconscious, attended to by a 999 ambulance and paramedic and scanned to within an inch of my life. I’m fine, back at work - albeit from home - but obviously anxious about having another one. This was my first and I desperately hope the last; my tongue is still recovering two weeks later.
The reason I’m posting here is that it coincided with the first of six loading doses I’d planned after almost a year of feeling Ill, despite self injecting once a month for the past few years. They didn’t blink in A&E when I informed them of my self-injection. I have continued with the loading dose and after the six, I feel much better and will now dose either weekly or fortnightly, although I did seriously consider stopping.
So, my rational mind states clearly that there is likely no relationship between self-injection and my seizure. Six injections later seems to validate this. I need peer reviewing however, so am asking this highly knowledgeable and experienced community that question: is or has there been any evidence of a link between self administration of, or overdosing on B12 and seizures?
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CyclingDog
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I haven't heard of seizures happening after starting injections. And it's not listed in the side-effects on my ampoule pamphlet. But it is a known side effect of b12 deficiency.
Now this is pre conjecture, and remember I'm not medically trained... But assuming they haven't found any underyling reason for it, perhaps it's a kind of reversal symptom - you know, when you get worse before you get better, after starting injections.
Normally it's a good idea to reduce slowly. So 6 loading doses followed by fortnightly may be too quick a reduction at first. Keep a symptoms log and it'll be easier to see any patterns.
Hopefully others will have useful insight. Best wishes.
Thanks Jade. I’ve actually been injecting once a month for the last three years, yet still have symptoms, hence the loading dose which I know has a positive effect. It has so far.
So just to reiterate, the seizure occurred on the same day as I would have normally had my normal monthly dose, except this was now to be the first of six loading doses. I have now completed those with only positive results so far. Less fatigue, much less breathlessness, improved cognitive function and all the rest we’d expect after a loading dose.
I know I took a risk, but it was a considered one and I’m confident I’ve done no harm and only good.
While your conscious mind knew it was going to be the start of an increased rate of injections, your body had no idea - to it it was just a normal injection so I think it was very unlikely that it reacted differently.
I know that our physical well being is significantly influenced by our psychological well being and vice versa, but as you are used to injections and don't seem particularly bothered by them, and you had taken the positive decision to do more jabs to feel better, I can't see how there could be any causal negative-thought-process impact either.
Well done for carrying on with your plan, and feeling better as a result.
I'm not sure if your seizure was as a result of low B12 or not, but could have been - without enough B12 our brains and nervous system cannot function properly and get quite severely damaged.
It might have been that your B12 injection didn't come quite soon enough to prevent a seizure from the damage of long term deficiency and now that you have increased the frequency of your jabs you will be OK. If you had enough damage to have caused a seizure (if that was what had done it) then you will probably be better keeping up the increased injection frequency for a long time, if not indefinitely.
The guidelines do say, for cases with neurological involvement, "every other day injections until no further improvement".
I'm not surprised your A&E team weren't bothered by your B12 injection - it's a good thing, not a bad thing!
I've been injecting B12 daily for over 7 years and even now, when there's not much improvement to be had, I soon feel the effects if I'm late with a jab so I've carried on with daily injections because it's safe and easy and not worth the hassle of feeling worse again.
I can't say whether there is any risk of another seizure going forward, or not, but if they scanned you thoroughly and found nothing obvious to follow up then I would trust them. Your only option is to discuss it with your GP, who will have access to your records.
Decades ago I had [what I now know to be] lots of B12 deficiency symptoms and used to pass out fairly frequently. I had been used to passing out due to a heart arrhythmia prior to that, but this was different and after a brain scan for possible epilepsy I was banned from driving for a while. I was desperate to be well and, because of my knowledge of animal nutrition, I started taking vitamin and mineral supplements. I can only think that this improved my levels enough to eventually stop the problem until I didn't pass out anymore and was allowed to drive again.
After many years of feeling better and with a change in my circumstances, I casually gave up taking the supplements - and then gradually declined to the point where I had lots of severe damage and had to resort to frequent injections, plus lots of additional vitamins and minerals.
With all these, despite other problems, I'm pretty well most of the time.
I had a single seizure about 10 years before B12 deficiency appeared in blood. Like you lots of scans - nothing found, unexplained. I put it down to lack of sleep. Now self-inject with no further problems
How awful for you! I had a similar thing but not as bad as yours. In addition to many other neurological symptoms,including shooting pains, muscle spasms etc, I had what I thought was a seizure in bed one night (fireworks going off in my head and face is the best way I can describe it). I didn't lose conciousness but one side of my face went numb for a short time, It was quite scary as never had one before! I didn't go to A & E but this was what prompted me to seek out a trial B12 injections privately. I had been to my gp previously and she said I didn't have a deficiency, as serum levels were normal. I've been self injecting every other day now for 7 months and never had another one, plus the majority of my neuro symptoms have either improved or gone. Maybe you need more frequent injections to avoid becoming deficient again? I am not medically trained.
Thank you and increasing the frequency is the plan, hence the loading dose. I’m going to start with one a week having had one a month for the past three years or so.
I think your B12D caused the seizure and the one shot you had didn't have enough time to prevent it. I had a seizure similar to you. I was out for over 30 minutes and when I regained conciousness it took over 3 hours for me to be able to move and speak properly. The paramedics just couldn't understand what had happened to me as all the readings they took were normal.
Thanks for that. The one shot I had was at 7am and the seizure at about 4pm later that same day. And if the seizure was, as you suggest, caused by the b12 injection, why was this the first when I’ve had over 40 injections in the past 3 or more years and as yet, no repeat seizure, but 5 more single b12 shots since.
I think charks means b12 deficiency ("B12D"). Not the injection,
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Jade-s is right. I think your seizure was caused by low B12 not the injection. Mine was. Since taking B12 it hasn't happened again. Although I had a bit of a set back when my GP told me my B12 levels were dangerously high (1772) and told me to stop the B12. Less than a month later I fainted. I came round straight away but I think it was my body giving me a warning shot. I was 62 and had never ever fainted before. I started back on B12 and have never had another episode since (2 years). I now ignore everything my GP says about B12.
Thanks Charks. I think that is possible too, maybe even probable. The thing is that inadvertently, I’m being referred to a neurologist the type of specialist I wanted to be referred to anyway, but didn’t know why: I’ve been nagging my GP for months!
I was referred to a neurologist. Before I went I sent him a letter telling him absolutely everything. Good thing I did because my GP didn't give him any information at all.
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