I was very ill at the time I Realized that I had pernicious anemia. I had to take two injections daily - 2mg hydroxycobalamin total - and still do.
Like a lot of people, I found that my symptoms worsened with injections especially at the beginning, and other new symptoms seem to arrive. It really helps me to know other people have experienced or are experiencing some of the things that I have. In the first couple of weeks of injections I had a terrifying experience where my heart was shake and jitter and I which feel a buildup of pressure. My blood pressure would go high 190 /120 And on an occasion I called an ambulance. It’s always returned to the new normal.
This was five months ago. I have been doing much better. I have on some days lessened my dosage and in fact I have felt better than I felt for years. A recent stressful family event, three days ago, brought back several symptoms. Stress tends to do do that, doesn’t it? Last night came the return of the shaky jittery heart. The palpitations seemed so strong When I tried to go to sleep. I had a tremor and I was vibrating especially around the heart. It was the same as it used to be with a buildup of pressure feeling sick with it. I wonder if anybody else has experienced something similar? It does scare me. I cried in fear actually because I’m a single parent and I thought I was dying. It’s a setback. It helps to know if anyone else has experience with this.
Also, the fact that it came back, does it mean that it was never properly healed?
Health anxiety form this condition is quite high. (Please don’t tell I am injecting too much or I need to go to a and e. When it happened before, my ecg s were all fine - sorry to censor)
I appreciate any shared experiences
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Kerrierach
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I have used 1.5mg hydroxocobalamin per day (I buy Pascoe brand ampoules) and a raft of supplements alongside a nutrient rich diet due to various absorbtion and assimilation problems, for the past 5 years.
20+ years ago I had ablation operations to correct faults in my heart and still get some glitches with it. I have a prolapsing valve in it too so it's important I stay as fit as possible.
My comments on your post are:
During the initial healing phase of my B12 treatment I was an emotional wreck and while my life's experiences have taught me not to be anxious per se, I definitely would have been otherwise, so that is to be expected.
Stress does use up B12 - and other nutrients.
B12d can easily cause your heart to do cartwheels and handstands and all manner of odd things which don't feel great at the time. None of these antics have managed to finish me off yet so I've given up worrying about it but you are right to take it seriously.
Just because it didn't show up at the time they were doing the ECG doesn't mean it wasn't doing something slightly daft and you could ask for a monitor that you take home. They are in very high demand and they are like hen's teeth so don't hold your breath but be tenacious.
I strongly suggest that you get your potassium and magnesium levels checked - and ideally get a full blood profile done if you can - as these two minerals have some of the greatest effect on muscle function and your heart is a big collection of muscles. They are also directly linked to feelings of anxiety AND are often liable to become deficient if you are on higher dose B12.
Re it's coming back, if certain factors trigger a response/symptom then those triggers will do the same again. I find I have to always manage everything carefully to stop things coming back - if I mess up then things come back to bite me... But the good news is that the same solutions as last time fix the problem and the longer you have this
1) the better you get at managing it
2)you learn what fixes what problem so you can get on it more quickly and hence fix it sooner
3)you can get confident knowing that no matter how much it messes up, once you get the balance of everything right again, you will feel better again.
You've done the hardest bit, it's now keeping it there - like juggling!
silly me - I thought that this post had been removed as I couldn't see it - I've just found it. Thank you so much for the effort in replying. It will also be printed and pasted onto a designated page in my PA notebook!
Good advice. I call the first 1-2 months of my intensive loading the "animalistic phase" as I wasn't functioning well at all. It was a very desperate time really. I've come so far. I had some very bizarre healing sensations on my heart and some did scare me. I can tell you that the night before I wrote the post I had an aggressive tremor in my heart that the mattress was moving. I've not had that since - I feel it was re-myelination. Thank you for sharing your own heart gymnastics. It is reassuring. Now my main concern is actually my lungs!
I have had bloods back since the post. Potassium and Magnesium all fine. I am waiting for an iron panel and vit D results as they have been low previously.
There are some situations within the family that I struggle to avoid and cause me stress. This has had profound effect on my healing. I need to find better strategies of dealing with it. Moreover, I get anxiety reactions which effect lungs but that's for another thread.
I'd like to hear how often you have been injecting for and if you are still progressing, if you don't mind.
Thank you for your reply - I know what you mean about losing posts on here! 😁
I have used 1.5mg hydroxocobalamin every day (I buy Pascoe brand ampoules) for the past 5+ years.
I take a raft of supplements alongside a nutrient rich diet due to various absorbtion and assimilation problems so not all my deficiency symptoms are just due to the B12d. If I get short of something else it seems to limit the effectiveness of my B12 too so I get a double whammy of deficiency symptoms. That said...
My cognitive function and motor skills are the most improved and are so good these that not only am I able to talk fluently again (I had become unable to find words quickly enough to put them together) but I'm just starting to notice that sometimes I'm able to do it without obviously having to think about it - another recent improvement!
Some things get set back by deficiencies of other vitamins and minerals messing things up but I don't worry about it these days - I know if I can get the balance of everything right it will get better again.
I have to accept that I'm more exhausted than I should be but can usually do whole days now (without having to sleep at lunchtime) and can have an odd long day too, although I usually pay for it if I do! To be able to do consecutive whole days is a new thing in the last few weeks - until then I was generally having to do split days or could only do a full day if I had half days either side of it. Before, if I had to do consecutive whole days, I often had to have at least a whole night-day-night asleep to recover, otherwise I felt permanently dreadful!
I find that if I have a spell of being extra tired even when I'm not suffering from a deficiency of something (which is more often the case than not because I don't want to over-supplement) then afterwards I discover that the healing sleep has improved something else! 😎
I get more tired now from using my brain, now that it works again, but as it accounts for 20 to 25% of your cardiac output (energy used), its not surprising, even if I do get frustrated by how much I still have to sleep!
Most of my problems now appear to be due to my immune system behaving badly and my digestive tract giving up the ghost, rather than anything more specific/fixable.
What's more, if I do sleep enough, I can actually feel pretty well - which in itself is brilliant. I'm really stoic and can keep going while feeling half dead but it's great if I don't have to!
I hope you are looking forward to your journey back to feeling better and the stresses of things beyond your control don't set you back too much! As you get better, coping with them will become easier and take less out of you, which in turn will help you heal, and so on!
Looking forward to seeing your contributions on here in the future, all the best, Denise
Yes, I'd agree with Denise. Getting a heart monitor for 24 hours can reveal anything missed by ECGs, and can set your mind at rest.
My occasionally thumpy heart (which I ignored as another B12 deficiency symptom) got more frequent and more severe for no apparent reason. ECGs had revealed nothing but GP suggested monitoring just to be sure. The monitor showed ventricular ectopics - which are disturbing yet apparently harmless, no reason is known for why they stop/start, no known cause and the only treatment offered was betablockers. I decided against taking these as I'd been told a year previously that I had sinus bradycardia - slow heartbeat.
I just waited and it eventually got back to an occasional, manageable condition.
More importantly, I stopped being concerned about it.
You might have to be a bit persistent, but worth knowing what is going on for your peace of mind. Likely now to be a backlog , as with other tests.
I think that's a good plan. I'm going to speak to Dr this week so I will ask for a monitor. I think I need some reassurance. Some years ago I had many ectopic heartbeat and had a 3D scan of heart - they found nothing. I do have a belief that B12 will heal most thing but it would be good to rule out other issues
Hello Kerrierach, I am sorry you are suffering so much. It often happens at the beginning that you get other symptoms. I have been having B12 injections since the 1970s. I was diagnosed with PA when I was diagnosed with Ulcerative Colitis and had injections each day then every two days and so on until i reached 3 weeks, gradually they reduced them, but since the Covid when my surgery said they were stopping them for a year I started self injecting and getting on fine. It does cause stress when you are worrying about how you feel and stress can cause so many physical symptoms as well as emotional ones. Tremors and shaky jittery feelings can be signs of anxiety, and it can get worse as you worry why it is happening. So many people are getting more anxious over this Covid and that does not help. How long have you been having injections twice daily? And how long have you had PA. What does your doctor say? Anxiety can also push your blood pressure up and if you have had family stressful events that will do it also. I think it is important that you get any other symptoms checked out and I know it is not easy to say do not worry or be anxious, as you cannot help it. I hope you can get things sorted out as to how much B12 you need to have. One thing I have found is that many people even if their B12 is 'normal'. it does not mean you do not need B12 injections. We know our own bodies. Take care of yourself and we are here for each other, so do not be afraid to talk to us. Good Luck Briarhill cat.
thank you for your kind reply. Like I wrote earlier, I thought that this post hadn't been published.
Fortunately I understand the B12 levels and have a clear diagnosis of PA. I often think about how long I've had this for. I started self injecting mid Feb 2020 as I self diagnosed myself. My B12 level was 220 nmol/L but I have been taking oral supplements which masked the result. Prior to this I was pretty much housebound and bed bound with severe anxiety and Chronic Fatigue for a year. 2 years before this I was very poorly. I'd say for last 7 years it has affected my life - prevented me from doing things and affected my personality and mood. I have an idea that I'v e had deficiency for the last 25 years and either it switched on or off or it was mild enough not affect me so much.
I feel much better mentally and energy wise after daily injections of 2mg. if I try to reduce I get horrible symptoms.
I understand what you write about the affects of anxiety and stress. I can get a little bit defensive with others when they mention anxiety becasue I was misdiagnosed for a decade with this and was treated unkindly at times by doctors. The anxiety and panic attacks I had were from B12 def. They came from nowhere and were uncontrollable. But over time, as I became fearful of them, and so there was a psychological layer if that make sense. I agree that they could be causing some of my symptons and/or making me feel worse. Covid was a stressful time and maybe I shouldn't say this, but it also took the pressure off me as a mum in the sense that I was not expected to do as much. The jittery heart and burning diaphragm I believe were from healing and not anxiety this time. thank you for sharing your experience.
it also worried me how many people aren't supported when they have a B12 level in range - it could be because they took supplements, that the range is just too low or that they have functional B12 where the tissues in the body can't make use of the active B2 in the blood. Very sad ;(
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