I also have migraines and headaches everyday . Do you think that is also from the b12 deficiency. For all my life I’ve dealt with headaches. Its to much some days
I’m not sure of this is relevant but I had a b12 level of 148 when finally diagnosed. I have also struggled with migraines. I have been on daily injections for a year and a half. It was when I started treatment that my symptoms got worse. Finally after 18 months I managed to cut back and now only get an odd tingle here and there. I am on twice weekly injections now. But I also have thyroid med and it was only once my thyroid med was increased that my headaches reduced.
I had symptoms for probably a year that I didn’t really understand, then was diagnosed in late 2017, then it took about 18 -24 mos to resolve most of them.
Tingling and numbness in feet, aching arms and hands, shortness of breath, dizziness, poor balance, falling, extreme fatigue, heart palpitations, sensitivity to light and sounds, irritability, suicidal ideation, confusion, couldn’t find words when speaking, etc etc. When I started treatment, I had sensations like a when you put your tongue on a 9-volt battery (I had an older brother!) all over my body and feeling overwhelmed by the imagined sound of a poorly tuned radio/static in my head. Insomnia was terrible. Aching arms and feet on fire!
I really thought I would never feel normal again. Wasn’t sure I knew what “normal” was anymore. Luckily I had a nice naturopath that kept encouraging me and said I would heal, that he’d seen people improve. I think that kept me going. And then I found this group and the PA Society. That kept me going.
Now, I am pretty much fine if I keep on top of injections. But I was self injecting every other day for months and months as it took the symptoms a long time to resolve.
Hang in there and good luck. Keep reading about PA and get lots of rest!
When you started the treatment you described your sensation as electric shock? Did it feel like your whole body was tingling and sending sharp shooting pain all across your body. Thats exactly what im feeling and its absolutely ruining my life. I literally can’t do anything because my body is just tingling and sending needle like sensations.
Yes, there were buzzing jolt-like sensations for sure. Reminded me of getting zapped with a battery or something. My fet weee on fire. Sort of like if you’ve ever had a bit of frostbite and then while they are warming up. Almost itchy, burning sensations.
Took awhile but most of that did go away. The zapping/buzzing feeling definitely didn’t last for much more than 4-6 months after treatment started (I think). Still get burning feet if I don’t keep up with regular injections.
Hope the unpleasant sensations start disappearing soon for you.
It’s common for individuals undergoing B12 treatment to experience ups and downs, especially during the early stages, 12 months can still be early stage because we all respond as individuals. The body takes time to adjust, and it’s possible that some symptoms may seem to worsen or fluctuate as healing occurs. This is part of the process often referred to as “reversing out” or “waking up”, where previously damaged areas begin to recover. As these areas heal, the body may temporarily re-experience symptoms, sometimes even in different or seemingly random ways. This can explain why fatigue and pain seem worse at certain times, especially in the mornings when your energy reserves are low after sleep.
This kind of symptom fluctuation can feel discouraging, but it’s actually a sign that the body is beginning to heal. The nervous system, muscles, and other tissues may still be catching up with the vitamin replenishment, and as healing takes place, the body can respond in unpredictable ways. Over time, as B12 floods one’s system, these symptoms should reduce.
Blood cells, particularly red blood cells, have a turnover rate of about 120 days. This means that your body is constantly producing new red blood cells to replace the old ones. In the context of B12 deficiency, this process is significant because B12 plays a crucial role in red blood cell production.
When B12 levels have been low for an extended period, the body’s ability to produce healthy red blood cells is impaired, leading to fatigue, weakness, and other symptoms. Once B12 injections are started, it can take time for the body to begin producing sufficient healthy red blood cells again. We all respond differently.
The fatigue and symptoms that can be experienced, especially in the mornings, could be due in part to the fact that red blood cell production is still in a transitional phase as the body continues to adjust to the B12 injections.
Over time, as more healthy red blood cells are produced and the body becomes better at delivering oxygen and nutrients to muscles and tissues, one should notice an improvement in energy levels and a reduction in symptoms like morning fatigue and burning pain. Until then, it’s important to be patient and give the body time to heal fully from the effects of long-term B12 deficiency.
With regard to magnesium, it’s worth considering adding this into one’s routine. Magnesium works in synergy with B12, supporting nerve health and reducing muscle aches and fatigue. Many people find that incorporating magnesium, such as the powder form I get from Vitamin Express (called Magnesium Synergy), can help reduce the burning pain and fatigue associated with B12 deficiency, for me it stopped morning headaches. It can also support better energy levels throughout the day, possibly alleviating some of the symptoms that may be worse in the mornings.
As always, the journey with B12 recovery can be gradual, and pacing yourself, especially in the mornings, is important. Consider spreading out activities to conserve energy and allow the body time to adjust as it heals.
You’re on the right track, but do be patient with yourself as your body continues this process.
thanks for the replay, and yes im taking all the co factors like magnesium and folate etc. i’ll just have to be patient and take the pain until it stops.
Stay strong, NewJersey02. It can be tough going at times, and often feels like you are making no progress at all, but then you look back and see how much better you are feeling and managing compared to an earlier point in time.
I find a symptoms diary invaluable for keeping track of this slow progress, but also for teasing out what is B12 related and what might not be. I am constantly discovering neuropathies that I didn't realise I suffered from as they arc up and then start to fade. ( Much better now, 8 months into treatment with injections daily or EOD)
I also shamelessly take paracetamol and ibuprofen ( at the recommended dosage) to ease pain, rather than endure, especially in the interests of getting a decent sleep. And as hard as it is, I find some things just have to be put aside to rest at the oddest and most inconvenien times, because our bodies will take longer to heal if we don't allow them that catch-up time.
I am currently 11 months out from loading doses after ordering my own B12. I was doing 5 1ml injections/day. I am know down to 1.5 ml split between 3 injections/day. I can't do any less than 3 injections...morning, noon, and night or my Neurological issues start coming back immediately. I had slowly worsening neurological issues for years and years, I'm 38.
I can't say how long because I thought many of the symptoms were normal as I had lived with them since childhood. I had been on 1/monthly dose of cyano and then methyl since my early 20's, but lost my access to B12 on 2 occasions at which point I went drastically downhill. The second time to the point of not being able to walk. I was also not receiving enough prescribed B12 ever to stop the symptoms from slowly stacking up over time, but as I said before I did not realize how bad off I was because it was a gradual decline of not well to really not well, and I just got accustomed to pushing through until I couldn't anymore. So now I've had to stop going through the doctors and totally gave up on my prescription.
There have been days recently when I was able to get by on a morning injection and an evening injection, but can't do that consecutively or my nerve pains and spasms and muscle tightness etc. come back rather quickly. So if I want to stay mostly symptom free I have to do morning, noon, and evening injections.
You describe so well a long arduous journey to a plateau where you are now comfortable.
I can relate very well to your description and I too inject three times a day. Sometimes I can manage on two now but that’s short lived as symptoms return.
Thank you for being so candid and generous in sharing your health journey it is so important that those of us who need to inject more frequently than every other day speak up - I there are more of us than we think!
I am so sorry that you are suffering. I can’t really add much to what’s already been said.
You will get better as clearly your body IS responding to a renewed source of B12.
But drink plenty water and also be aware that with renewal of cells comes removal of old and dead cells. No cell renewal means reduced dead cell renewal. I think a lot of the pain and discomfort during early treatment accounts for a lot of dead cell removal.
I also took painkillers during the first 4 months but not had any since. I found that Vic Vapour rub on the temples eased the constant headache and an electric blanket helped with the constant pain.
Keep the diary of symptoms as suggested as it will firm a source of encouragement when you can’t see progress - but it will be there.
Be strong and keep focussed and you will get through this.
hi after loading dose number 4 I had the electric shocks through my arms for about 2-3 months. Started the night before with burning through my limbs to lower back and I couldn’t settle. I had nerve conduction testing across my body and identified damage in right foot and left hand. For me, persisting led to it getting less and about a year later I could attempt the gym and running again. Still recovering/managing pain and energy levels 2 years later. Good news it really is part of the healing process but other won’t understand this. Best.
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What now, totally lost and scared 
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