Although the hospital have signed me off as "No abnormal criteria found" , my GP told me today that during the 24 hours I had a lot of additional electrical signals misfiring, which is what causes the discomfort. Recording showed 13 episodes of trigeminy, 272 episodes of bigeminy and 3923 multifocal VEs seen in isolation.
She would like me to take 1.25mg of Bisoprolol. I'm a bit reluctant to be honest. She also said that there is nothing that I can do to change/ improve this, nothing that would reduce episodes.
She doesn't think this condition is B12-related. The thumping heart problem is, to me, far too frequent an occurrence, night and day, to be stress-related, and not painful/ prolonged/ worsening/ exertion-related - so not like a heart attack either.
Can anyone give me any sound advice on what to do?
Is this likely to be B12-related ? In which case, why since April would it suddenly become a very frequent occurrence, rather than a rare event ?
Thanks - I'm at a bit of a loss.
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Cherylclaire
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Mine does all sorts of mad things - including the things you mention - if my B12 and/or supporting supplements get low. It has done for years and hasn't snuffed me yet!
Magnesium and potassium are required in the right balance for nerve impulses and muscle function, along with quite a lot of other electrolytes and I just wonder if your levels of everything are optimal?
Your heart is a massive collection of muscles, threaded throughout with nerves so it tends to glitch if your nerves or muscles are in anyway compromised by nutrient deficiencies.
An iron profile and vitamin D level check would also be useful if you can persuade them to run bloods for you.
Calcium is important for heart regulation (mostly because it locks up other things!) and this can be a affected by your parathyroid function, among other things.
Sodium is rarely lacking but balances potassium and magnesium so can be influencial...
These are only layman suggestions and they are no substitute for a clued up cardiology team - just things I have learnt over the years to keep me "ticking" but please remember that everyone is different.
….only I have no cardiology team, clued-up or otherwise, because the cardiac department at the local hospital, who fitted the 24 hr monitor, have not seen anything there that they want to revisit and left it to my GP .
I have been self-injecting every other day for over 2 years, have 2 x 400iu vitamin D3 daily on prescription, and a multivitamin and mineral daily which does contain magnesium.
Ferritin is about to be rechecked and should be around 80ug/L now. The Oral Medicine consultant wanted it raised (think it was around 60 anyway), so I was taking quite a bit, what with multis and additionals ! I wanted it checked anyway, because it has previously dropped twice before after being raised with supplements on top of general supplement. No reason.
Potassium and sodium ? - not really sure.
What changed in April, also not sure. Just when you think you're getting somewhere.
Not only are we all different but none of us seem to stay the same for very long either !
All I can suggest is that you ask for as broad a blood profile as they will do for you.
Things need to be in good balance and any one thing that is high or low can upset a number of other things. High levels can have similar symptoms to low too, just to be confusing.
Maybe April could have seen a point where one thing got to a point of deficiency or excess that upset the balance?
I learned all my essential self-care stuff because my cardiologist was adamant that there was nothing wrong and it was "all in my head" so a lack of a cardiology team is not the end of the world! In the end I got a diagnosis because I accidentally passed out in front of my GP who promptly packed me off to hospital where they wired me up to a monitor and found that I was telling the truth and it was doing mad things. But they still didn't do anything about it.
The only thing that's really "fixed" it has been enough B12 and the right balance of supporting supplements - which varies over time depending on my absorption levels/my autoimmune fluctuations/my output levels/my diet/totally random weird things/etc, etc!
Good luck with it and keep us posted on what you find, please.
Well, GP checked my ferritin level, which I'd been trying to up for next month's Oral Medicine consultant appointment. Was taking 150% of daily requirement plus whatever was in my diet and it's now 59ug/L … down from 61 in September last year !
So that went well.
Adult Inherited Metabolic Diseases consultant appointment also a bit disappointing: after 2 years, DNA revealed that they cannot find any problem with processing B12 after injecting. They acknowledge that I'm ill, but don't know why and can't therefore test for it. Think that's it now - awaiting report so I can ask for someone sciencey on here to help interpret results if possible. Two things they found that they haven't seen before. Raised MMA now being seen as my "normal".
Meanwhile, in general, still seem improved but symptoms persist: thumpy heart. angular cheilitis, burning tongue, daily diarrhoea, air-hunger and dizziness. All my "normal" (?) Hair's stopped falling out though, so not all bad !
Am now doing around 2 injections a week, not seeing any deterioration.
One famous site about B12 says "the heart is a big bundle of a special sort of muscle which is also nerve, so when the other nerves start to work, so does the heart and this may cause palpitations"
Of course, if you believe that heart muscle is a nerve you'll believe anything.
Have you been advised to cut out caffeine and foods that can affect your heart rhythm?
The drug is in the same group I think as the one they wanted me to try for headaches. It appears to slow the heart down as is also used for high blood pressure. Its always difficult weighing up the pros and cons of taking drugs.
Definitely try getting your supplements and foods to help.
A further discussion with the cardiologist probably needed to understand exactly what's going on and the risks.
I've done everything I possibly can do diet-wise. Same with supplements.
As for my heart, I was told in 2017 when I had microsurgery on a shoulder, that my heartbeat was slow. GP said my heartrate has always been good when she's checked it.
Now it's gone bananas. Still don't want to take tablets unless there is no alternative.
I think these are betablockers, but not entirely sure.
No cardiologist involvement here: they read the monitor recordings and didn't need to see me again. GP got receptionist to call me in to discuss results and medication today so not had time to process this really yet.
As for the receptionist giving and discussing results i had the same after my last brain and cervical cord mri scan. The receptionist after I rang said everything normal no doctors appointment needed.
Simply not acceptable.
I booked an appointment to discuss with gp as I didnt understand report.
Then decided to pay a neurologist to look at the radiologist report on mri I'd had printed off and to discuss the use of propranolol. Only then I felt I could make an informed choice /decision.
That's leaving an awful lot up to you, Nackapan ! Especially when B12 deficiency can make it really difficult to digest information, make decisions, remember things etc !
I just finished up a spell very much like yours. I had rapid heart rate going up to 191, and a feeling in my chest that was like physiological anxiety. I had two emergency room visits. I tried daily B12 injections for awhile with no relief. The only levels that were low were iron levels, but my ferritin was ok. I took Gentle Iron by Solgar and got my iron levels up and am feeling much better.
After wearing heart monitors for over two weeks, all that was identified was mild Supra ventricular tachycardia. I tried a beta blocker and hated it, plus it didn’t help.
I really believe people here when they talk about getting levels of vitamin D, Iron, and folate to the proper points. I take potassium and magnesium and am sometimes low in sodium. My platelets are now low. It is a constant challenge to keep everything in order, but I am so grateful that the people in this site know that and communicate their knowledge. Doctors here know nothing about that!
Good luck to you; I hope you get relief soon. I know that heart issues are scary! Sita
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Please add a sentence to explain. Just having a few words in the subject line is not adequate.
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Magnesium seems to be closely related to pacing of heart, though - what do you think, helvella ? Magnesium without the B6 perhaps ?
Bit wary of betablockers but frequency of thumping heart episodes difficult to live with.
GP said to have a look into it, do a bit of research, said 1.25mg of Bisoprolol is a low dose but that this condition could go as suddenly as it started and isn't dangerous. It's my choice.
It doesn't hurt and hasn't got worse since April- but no sign of it going yet either.
I read your post with interest. About a 18 months before I knew about or was even diagnosed with pernicious anaemia, I went to the Dr with what I described as palpitations, or missed beats then 'loud' heart beats. I can't explain this accurately but suffice to say that I had a monitor on for a full week, it showed a 'few peaks and troughs' shall we say but nothing was fully explained to me but nothing to warrant further intervention at that time. Anyway, once diagnosed with PA and treatment established I have had no more flutters or palpitations. Just felt I wanted to share that and I must read more about all this side of things. I do know I was very low with iron, folic acid and VitB12 at the time. Let us know how things progress Cherylclaire
Mine went from the occasional thump in the night- waking me suddenly as if someone had dropped a heavy book right next to me - to off and on several times every day and most nights from April onwards. I told GP it felt worse if I lean forwards or backwards, but then I suppose it would, wouldn't it? Apparently I wasn't even feeling most of these irregularities anyway.
Can't think of anything else that changed in April - my blood test results were all coming in better than they'd been since this all started over 4 years ago. I have been self-injecting every other day for 2 years to get this well.
Started to think maybe I now don't need so much, so reduced injections over the last few weeks to 2 a week. This is starting to prove not the answer either- memory and concentration issues among others - and certainly made no change to thumping heart at all.
Unsure of next move now. Just another puzzle to work out I expect. Thanks, Miss-guineapig
You've had such a hard time. I feel at this time of year, when my head is so full of things to be done, my memory or brain fog is really bad. I try to slow my brain down and work slower. I know the right thing in my head but I can't always find it or express it...so maddening. Hope you feel better soon x
Hope you did okay over the Christmas holiday- I'm not doing so bad, but still got a thumping heart and still not sure that I want to commit to betablockers at 61 yrs old.
It's an everyday occurrence since April that hasn't got worse or killed me (!) - I am aware that this was 6 months after my mum died suddenly of a heart attack, having taken the same betablockers- so not ruling out shock as a cause, or perhaps understandably negative connotations with treatment offered. Can afford to have some thinking time on this, see if it goes on it's own, same way it started.
Otherwise, I've been doing really quite well. I've reduced injections from every other day to about 2 a week without a massive problem. In fact, feeling alright. I'm letting symptoms decide when I inject - which is difficult because I haven't yet had my first symptom-free day in 4 years. Usually now I self-inject when I start getting aching joints in legs, slowing down, sleeping more and especially start looking more deficient. All my bloods have never looked so good : just tried to up my ferritin to 80ug/L (a 4-yr high) and awaiting bloods to see if I've got there. It has taken a lot of supplements and everything else fine currently.
I'm seeing an Oral Medicine consultant in February and an Inherited Metabolic Diseases consultant in 2 weeks: first to see if angular cheilitis has grown bacterial cultures, second to check my DNA. Can't even remember why, it's been so long- started about 2 years ago now
I know how hard it must be at this time of year- so worried that you will forget someone. Endless revision of lists and still difficult. I'm lucky in that I didn't have to cook at all, so at least didn't have to worry about food/ dietary requirements/ seating etc. Just had to turn up on time with the right set of presents ! Hope all went well. x
Thanks, Foggyme - if anything useful comes from this, I will let you know.
You know how this goes: not wanting to get my hopes up, remaining philosophical about outcomes, but don't want to have waited just to hear "nothing found" or "inconclusive results" - and having to return empty-handed to GP once more.
Meanwhile, quite excited about the PAS Conference lecture on current research re. bacterial overgrowth in large bowel - and glad to see Martyn Hooper's name attached .
I was under the impression that just coming off them can be done safely only under medical guidance, because stopping them completely can cause blood pressure to rise suddenly. This is, in part, my reservation concerning starting treatment.
I would need to read more about that Cheryle, but your Dr wouldn't just stop a drug suddenly anyway. I just know they work perfectly for my friend and as a nurse I know how effective the drug is. Best wishes
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Pernicious Anemia - with normal B12 (NEED HELP)
"Geriatric doctor"
Ocular/retinal migraines
B12 defficiency and bad behaviour
Back on the injections again
