I suffer with idiopathic VF and have a S icd in place. This has saved my life so many times but this last year my defib has had to shock me about 9 times all correctly. My constant and specialist are at a loss the medication I’m on should be stopping the extra heart beats but aren’t. A world renowned specialist is at a loss too they think ablation may be an option but unless my extra heart beat comes when they doing the procedure they might not be able to do it.
I’m so down in dumps and fed up I feel as though my life’s on hold. It’s so scary for me and my family when my defib fires as I can fit and black out. I feel like I’m letting my kids down been poorly a lot. I’m having to have a lot of time off work when it fires due to feeling rubbish and needing to get checked out.
My story began in 2017 when I collapsed had a massive fit got taken to hospital where I went into vf my family were called as didn’t know if I would make it. I spent a week in intensive care and further 2 weeks on the cardiologist ward where was decided the defib to put in. I was only 37 at the time I feel as I still haven’t got my head around it all
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I'm in a similar position, I have sudden bouts of VT which goes to VF or just VF. I've had a fair few shocks, but not as many you! I'm also on a lot of drugs and feel I'm at the limit drugs wise as I take both Amiodarone and Mexitiline along with a hefty dose of beta blockers.
I know how exactly how you feel and what you are going through.
it’s rubbish isn’t it, I’m on hydro quinidine on the maximum dose this has been switched round from quinidine sulphate to try see which is best (it’s also unlicensed) I’ve to take tablets for the side effects of my quinidine 🤦♀️I’m on beta blockers, anti fit medication and blood pressure tablets. I take multiple vitamins snd vitamin d as when my defib goes off sometimes my electrolytes have been low as well as zinc and magnesium levels. Feel like a walking chemist.
Don’t get me wrong I’m so great full I’m still here and my defib saves me, it’s just so frustrating I can’t stop this happening. I’m paying for a car I can’t drive that I’ve had to sorn it’s costing me a fortune in taxi and bus fares to work. I can’t take kids out places just gets me so down x
Just as a long shot, whilst it may be entirely medical is there a possibility it could be down to lifestyle and more specifically diet? We think we eat healthily but that is not always the case and all sorts of food have unexpected and cumulative consequences. You shouldn't need to take multiple vitamins on a balanced diet unless of course your body is unable to make them adequately from a reasonable diet due to your condition
the hospital haven’t told me to take vitamins I’m just doing it off my own back to see if that helps as I’ve said sometimes my zinc or magnesium levels have been low.
I’ve spoken to the hospital and they said it won’t cause any harm taking the vitamins but that’s not the problem.
It’s just the extra heart beat that falls in the wrong place and where it falls is most common in women and could be hormonal too
I am the first person to advocate positive thinking but urge you not to let the comments of R3mi upset you. We all deal with our respect heart issues differently and everyone’s different problems are as important to them as the next persons. I have suffered alone for over 7 years and a relative newbie to this site. But have found there are a lot of POSITIVE kind people who will support you and offer good practical advice. You are not alone and sometimes just putting your fears out there will make it seem a little less of a burden.
"It’s just the extra heart beat that falls in the wrong place and where it falls is most common in women and could be hormonal too"
That also sounds very familiar, and I'm large hairy bloke! For me, it is about re-polarisation within the heartbeat (or something), if it happens during that phase in the heatbeat, I'm in VT / VF and BAM!
With regard to electrolytes, after a shock when I've attended hospital (I don't bother going now) and had blood tests, I've always either had low Magnesium or Potassium and put on a drip to bring the levels up.
I'e also taken lots of vits and minerals to try and hedge against 'low' levels, but it doesn't seem to matter, still get shocks.
It is at times very frustrating and anxiety fuelling having absolutely no control.
Please know you are not alone and many others know exactly where you are and how you are feeling. You are more than entitled to have a vent and moan every now and then, that is what places like this are for.
Hi, I’m sorry to hear about your difficulties but do you know about the Access to Work support scheme? It’s explained on the gov.uk website. I got help from it to pay taxi fares to work when my heart conditions worsened and I found the travelling on public transport to work too difficult to manage. It is a very quick and simple process to claim and it repaid I think 80% of my taxi fares which meant I could stay in work and be taken door to door the 11 miles from home to work. It meant I was able to work probably two years longer than I would have otherwise. You don’t need to have a low income to qualify either. I hope that might help you.
no never heart of it, I will have a look. I can get bus most times but if I finish at midnight or start at 6am I’ve to get a taxi and it’s £10 and I work till midnight twice a week and at 6am once a week.
So thank you for the information I’m really great full
You’re welcome. For me, it took a lot of the stress out of the travelling, knowing I could get straight there and back with no cancellations or long delays etc. I had been quite unwell when I arrived at work after a difficult commute but with a taxi, I found I was able to work straight away and felt a lot better. Good luck with it.
Now I know this might sound a bit callous and harsh but the reality is everyone’s life is on hold no one knows the time or place when we have to move on. Looking at the statistics I would say your chances of staying here longer than the average person look increasingly better you have all these issues yet you are still getting up in the morning. These issues started five years ago you still had a life before that and are having one still this self pity is selfish and draws energy from your body that needs it to be focused on healing. You are placing your children in the same position as you are in, why would any parent do that. You gave them life to enjoy enjoy that life together give thanks for another opportunity to live, positive thinking has cured many people you can start now include your family and you will help each other. You will be OK 👍
thanks for calling me selfish!!! I came on here to try get everything off my chest to start to feel better. But saying I’m selfish and basically saying I’m a bad parent doesn’t help. I give my kids everything I can I just feel guilty I can’t give more and feel guilty when I’ve to leave them to go into hospital or when they see me fit due to my defibrillator firing. Yes I’m extremely lucky to be here and I am so great full I am. I’m just stuck in a rut at the moment as it’s firings so much for reasons they don’t know. I’m actually shit scared to be honest knowing my heart keep’s trying to stop and it’s all thanks to a box I’ve got inside me that it doesn’t!
Please don’t let that reply upset you or put you off the boards. You don’t come across as selfish or self-pitying at all. Quite the opposite. I haven’t got any words of help or wisdom in relation to your particular medical situation, but just want to wish you well. I hope the medics are able to come up with a plan to help you and reduce the need for your icd to fire.
Wow. I can just about respect the intention, but yes, it comes across as callous and harsh. Unnecessarily so. The poor OP is understandably scared and upset, and to be honest, telling them they’re selfish and self-pitying is not only unfair and untrue but borders on being outright mean. Do you have an ICD? Do you blackout and fit in front of your small children because it keeps firing? If not, perhaps you need to reflect on whether your reply is particularly helpful under the circumstances. I’m all for positive thinking and making the best of whatever situation we find ourselves in, but when it comes to medical issues, there can be a very fine line between positive thinking and being delusional. In this case, I’m pretty sure positive thinking is not going to stop this person from needing an icd.
I note the feedback on Mrs Tesco what got me going was the emphasis on her car she had to sorn it. err Its costing her money err I would imagine she might be disqualified from driving if that is the case with her health wouldn’t it be better to get rid of it. Had she centred on her issues there would have been a lot more sympathy . I genuinely wish Mrs Tesco good health and a long life free of pain and anxiety as I do anyone who comes on here.
im not disqualified I had to surrender my driving license because my defib keeps firing. When my defib fired I’ve to surrender it for 6 months unfortunately as my defib keep firing I can’t apply for it back. After my defib was put in I was shocked before the 6 months to apply so medication was started and after 6 months got my license back and I’ve been fine up until August 2021. Having to send my license back is heart breaking because I’ve to ask ppl for lifts ect.
I had my post to try get stuff of my chest like I was feeling I was putting on people
in the early days of my issues I flat lined in hospital and miraculously recovered the doctors were absolutely besides themselves trying to figure out how I came back. That had a traumatic effect on me 9 years later I was finally told what exactly it was that happened to me Vascular Standstill was the comment up until that time I was carting myself off to hospital worrying about this palpitation, that pain, heart flutters. I read up about it the reality was that I was very lucky indeed. I understand how you feel and I wish that I was able to give you the cure for what you are suffering from you have had as far as I know 5 years of this you are still here of course as we get older things wear out but that doesn’t mean that time is running out, you strike me as being a person who doesn’t give up. Keep that going. As for the car if you are allowed to drive on your next assessment pick out a new one new start new car. In the mean time keep your positivity strong. I have a feeling that twenty years from now we will still hear from. I wish You a long and healthy life.
thanks for your reply and I hope that your much better now.
I was totally healthy before I flat lined in 2017 took doctor’s 20 mins to get me back. They had no idea what was wrong had ct scans, lumber punctures alsorts. I was in intensive care a week and couldn’t breath for myself. If I’d have got poorly anywhere but the hospital I wouldn’t be here. Going into idiopathic VF is one of leading causes of sudden death in adults. And it’s idiopathic because they can’t find a reason why this is. I’ve a structurally normal heart, no heart disease. Normal ecg, I’ve done exercise tests and ajmaline tests , mri and holter monitors but they can’t find why this happens
The episode are triggered by a single morphology ventricular ectopic with a coupling interval of 360ms. I’ve also non sustained arrhythmias which are triggered by ectopic with a much longer coupling interval
My consultant is baffled why this happens and a world specialist Bernard Belhassam from Israel ( I’m from the uk ) has been sent all my notes and data and he thinks I’d definitely idiopathic Vf . And he thinks ablation maybe possible but unless I’m having the ectopics at the time it is difficult and when I had the ajmaline test I had never brought on the ectopics I get he’s suggested empirical catheter ablation of the Hispanic tissue what ever that means.
I’m on hydro quinidine to try stop the extra heart beats but it doesn’t work
thanks for your welcome reply we seem to be kindred spirits with what happened to us I don’t think I have what you have but we have certainly been given an other chance to enjoy life my incident happened 10 years ago I am 72 now and according to the doctors am in pretty reasonable shape so thank God and the doctors for that we won’t go before we are ready I have a 102 marked down and I am certain that I will be given that. Pick your date and stick to it you may have a few issues but will learn to live with it. My initial intentions were well meant and it did get you fighting back so there is a force waiting to be channelled into the right direction.
Sorry you are having a hard time with the electrical system of your heart.
Make sure you tell the medics about your supplementation, and don’t do any megadoses.
Magnesium is measured easily, but zinc is a specialised test, and too high levels of zinc can mask copper deficiency that can cause/mask folate deficiency which can result in permanent nerve damage, depression, a myriad of symptoms.
It also doesn’t help that the stomach acid inhibitors most of us are on for at least some time are going to result in reduced vit b12 absorption, so make sure your folate and B12 are at the higher end of normal.
Vitamin D is fat soluble, so it sticks around, and it really impacts calcium which affects muscle contraction, like heart rate.
They all need to be checked on a regular basis as too high levels of Vit D and zinc are really problematic.
Vitamin D is probably available in most labs, but zinc is a trace mineral and sent to a few specialist centres.
Ask to have your B12, Folate, Ferritin, VitD, UIBC and transferrin saturation checked, as well as all the other routine tests, UE, LFT, Bone, Mg and TFT to see if your low mood is related to your biochemistry. Ask for zinc and copper( ceruloplasmin) as well.
Hi, your knowledge regarding biochemistry appears comprehensive to say the least (not that I would have a clue) and I am sure her medical team would check all these levels out. As to her low moods have you really read her post? 42 yrs old, ICD fitted and firing at regular intervals, medical team at a loss at present as to what to do and she is scared stiff for herself and her young family!! Now what else do you think may be causing her low moods?.
i like your reply. I still think many people don't understand how powerful the mind is when it comes to fear and anxiety. Mrs tesco has every right to be scared like we all are. We have all been dealt a rubbish deck of cards and how do you deal with it.?
Some good replies just above. Mrs Tesco has been dealt a lot of bad cards so no wonder she is low. I mentioned above about diet. It may well be that all the complexities are caused by unfortunate electrical or other deficiencies in the immune system and various organs, but it may well be that at least some of them are caused by a diet with too many or too few of the things needed to keep her particular body functioning properly.
At the least it would be good to eliminate some of the problems, as collectively someone in their early forties could reasonably hope for better health for many years.
Advice on diet changes, what was considered bad last year may be rehabilitated this year but it might be worth reading a book such as the well referenced "The Great Plant based Con", as parts of it might reflect her own experiences and eating more or eating less of certain foods might help her, at least in part.
As a life long Vegetarian -not a vegan-I realise I am short of all the various things I need, but very many people will also be short of them despite eating what they thought was a balanced diet. It's a hefty book-others are available-but it might be worth investing a weeks reading to see if there are any pointers or things you might be able to raise with the experts.
possibly diet may help. But like . I said in another post a friend at work has an icd. And they don't know what causes it. He done his best with diet and loosing weight. Which is a way that you can have control. But it is the constant worry that there is no cure for him as yet . Yes you can have therapy, tablets but it is still there on your mind day in day out. It is so cruel the deck we have all been dealt.
Absolutely appreciate the complexities involved with multiple conditions. However looking at diet -whether we believe we already have a healthy diet or not- might help to resolve some of the issues if not, by any means all of them. Mrs tesco is far too young to want to put up with so many things which are clearly and understandably causing her distress.
Agreed. It is important to eliminate any biochemical causes of mental issues, it happens far more frequently than most people would expect, especially with folate deficiency.
It may be for most on my mind as I did attend a lecture last week on micronutrients, where a consultant said 100% of her patients experienced depression due to biochemical imbalances and deficiencies. She also asked us to flag the things we see in the results as the medics don’t always pick up on it…..it takes a village to diagnose a patient sort of thing.
I do not doubt your sincerity in the least but in this case her cause for anxiety is self explanatory. I think your lectures are on the whole for mental health issues for people with no rational causes. This lady on the other hand has every reason to be anxious and down in herself. Hopefully an ablation may ease her problems somewhat and she can learn to relax again. No offence meant for your advice.
The trouble with all this. Is the anxiety has something to grab hold of. The worry of the heart having a problem, which basically is a slightly important organ within our bodies. However chemical can have an effect but we will all react differently to the chemicals. For example potassium can have an effect on the hearts electrical signals but you don't want too much but you don't want too little. So it's all a balancing act. Mental health can be down to chemical imbalance, but is worry a chemical imbalance? or do some people worry more than others which basically can breed anxiety which then can cause depression and vice versa. These caffeine rich sports drinks can make the heart run faster. When you worry or get anxiety you produce adrenaline, Flight or fight response. We end up in this flight or fight response because we feel threatened due to our heart issue. Which is naturalas we have fear. we will never know the answer's that's why we have specialists. But I agree that you can help yourself with diet change and looking after weight control and blood pressure this is very important. Unfortunatly modern life can cause peaks in blood pressure which can cause All sorts of niggles.
sorry to hear about your problem.. you have my sympathy. It is not easy. You have every right to feel the way you do. I personally don't have an answer as iam still reeling from my issue. But I have a work colleague who has an icd. We compare notes or I should say we moan about our problems and the nhs. Try to get it off our chests. But he says to me that he thinks about it daily. Admittedly he is only 30 and so he tries to stay active and do things. But his icd has saved him a couple of times. He is back driving which is a positive for him. But I feel for everyone who are now part of the hearty club. But we will try and offer support and information, and experience which will help calm some nerves but not all. Keep strong.
thank you everyone. Think when I posted my post I was really down. I’ve managed to have a good sleep and feel a bit better today and my gp has given me a sick note for work. I do try look at the positive things but at times things do just get to me. The shock I had on Sunday really scared me for some reason more than others. But I will pick my self up dust myself off and carry on.
Thank you for taking time to reply to me xx
glad you feel better. Remember you are not alone it might feel like it alot of the time you are alone, but you are not. We are all going through it. The one positive to take is that you are now being looked after and will be checked. Unfortunately it can be a bit of a wait, for answers, but as my nurses say iam in a better place than I was last year before my issue was known.
hi. I’ve just read your post and really felt for you. You’ve been through such a traumatic time that I’m not surprised that you are feeling low. You are experiencing a normal response to trauma which the majority of us on this forum can relate to. I spent months and months of being terrified of everything and while it’s a bit better now I think it takes a long time to come to terms with our experiences. Having the icd fire off must be incredibly scary but at the same time it’s a huge safety net for you. It sounds like you are doing everything you can to keep yourself healthy so please ignore the person who posted that insensitive response. They are not representative of the people who use this forum who are generally very kind and supportive. You are not alone. Xx
I'm very sorry that not all the responses to your post have been considerate or helpful! I think unless someone has experience of cardiac arrest, ID's shocks, etc it's very difficult to understand how scary & upsetting the situation is. Yes, you have a powerful device looking after you but that in itself causes anxiety. My husband had a cardiac arrest, he also has an ICD fitted which recently had to pace him out of an abnormal rhythm, once that's happened you're on edge waiting for it to happen again.
if you on Facebook there is a closed group called ICD support-UK, I highly recommend joining the group as you'll find there are a number of members who have similar situations as yourself & may be able to offer advice.
I’m so sorry you are feeling so low 😔 but people on here will lift your spirits hopefully. I was 40ish when my my issues began (seem tame to what you’ve been going through) but this year I’ve been of work coming up to 9 months and so far they’ve covered me and I do want to go back. The guilt of letting people down, if you’re that kind of person can be overwhelming but, you are not letting family down - they know it’s not your fault and I’m sure from what’s happened they are glad you are here. My children were only young when I hit this road and yes, I too feel guilty I’ve not been able to do a lot of stuff with them, my husband has had extra burdens but when I get those hugs of my grown up kids and him now - I in times of depression think - both parties are so glad to see the other no matter what! I’ve never experienced it as bad as you and thank my lucky stars but we are entitled to feel like that sometimes - it’s ok and don’t burden yourself with more, but people have said to me look around and and count how many things made you happy today and focus on the happy moments and try to relive it in your mind. The concentration on those bits will give a break from the bad, no matter how small a break. If you then add up the happy breaks in hours that makes less time sad. All a bit cliché yes but give it a go, write down the happy times on paper so you can re-read them to remind you it’s not all bad. I hope you feel better soon but be kind to yourself - you’re worth it x
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FED UP WITH BOWEL UNPREDICTABILITY
