I read the digest of the posts..and must admit get confused..some people see lots of doctors and Cardiologists etc other none..Some seem to know what each bit of medication does and when and how and why to change it!Some people’s medical advisors tell them to do things that I understood where unadvisable.Some people appear to be poleaxed by AF others don’t seem bothered. HF appears to be the end of the road fro some and others appear to ignore it. I know we’re all different. If you feel OK are you OK?
I get anxious because of the unknown …and the known…
In some instances I think wish they hadn’t found this and carried on as before..but then think perhaps it’s the four pillars etc keeping me going…
I expect we’re all on some part of this range of feelings and thoughts.
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Alicant
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hi, yes I agree. The process is traumatic and we all respond to that in different ways. I found realising I had a heart issue at 53 totally freaked me out, so many medical staff repeatedly asking if people had died suddenly and young in my family. I also had a traumatic echo when they weren’t sure if they could let me go home. But I met my consultant last week and had great results from a couple of imaging test , I am also on a tiny dose of beta blocker to control arrhythmia- I think meeting the consultant and the drugs are making me less anxious. I asked if there are things I should do or not do. Other than less/no alcohol and caffeine and more water there isn’t anything. He also said- don’t read the letters you get sent they are for your GP. Access to test results about our health is an amazing advancement, I'm not a cardiologist - there’s so much detail in there, so I should probably step back from google and get on with life.
I am taking the 'feel the fear but live your life' approach. Supporting others who understand what you're going through helps me. I'm not going through this alone.
One thing I have learnt about the heart and cardiology is that it is extremely complex these days. When clinicians say tests, treatments and medications have revolutionised in the last 30 years I am sure they are right but it has become so difficult to understand. (And I am sure it is just the same with every other organ and part of the body). Reading the different posts can be overwhelming and I try to filter out what does not see relevant but what is helpful is the listening and the emotional and empathic support everyone gets and that seems to be the thing that is missing for many people with their illnesses. Which is not to say that some of the individual staff aren't amazing - patient, kind, tolerant and generous - but there seems to be no one person who takes the time to explain what is going on and who makes sure we understand what they are telling us and its implications and, in particular, how it relates to other health problems. In less complex times this might have been the GP but these days they are often running to keep up with all the developments and some times are not knowledgeable of the less common problems.
A 14 day holter monitor test result showed that my wife had experienced a single asymptomatic episode of AF lasting 17 hours. This was also picked up on her Apple Watch. As a precaution against her having an AF-related stroke, her cardiologist has prescribed her a prophylactic dose of the anti-coagulant Edoxaban. In his view, no specific treatment for her AF is required given the frequency of events is low and she does not detect any unusual symptoms.
Doctors are always reserved in what they will and will not say. Patients understandably want reassurance which in many areas of medicine, doctors are unable to provide. For example, my wife recently underwent surgery for a rare adrenal gland tumour - a pheochromocytoma. Her surgeon could not say whether the tumour was cancerous: she could only say that statistically it is known as ‘a 10%er’. She was also unable to say whether the procedure could be completed laparoscopically or whether the remaining adrenal gland would be capable of taking over the body’s requirements for various hormones. Like all surgeries she covered the statistical risks of secondary harm etc. My wife went ahead on the basis that she felt she could trust the surgeon.
I agree with what you’ve said about people’s situations and some dealing with it and some not. In my case I’ve had 21 yrs to accept my situation. Many people on here are just starting out and in my case I just kept myself busy at the beginning to take my mind off it, but it was still there and traumatic.
I waited 1 and a half years for an ablation and I was in constant atrial tachycardia (SVT) I got forgotten and left off the list. My mum was a nurse, now retired, and she kept telling me to contact the secretary. After months I did and I had my ablation shortly after.
Since I can’t fault my care since then I’ve done several trials, which I think has helped me, and now I’m getting to the end of the road. I do feel down at times because I can’t do the things I used to do. I dread having colds coughs or chest infections. Sometimes I get chest pains and just let it slide but sometimes I contact my GP, who gives me excellent care also. I do feel fortunate, but also not so, as my illness is progressive. I mainly feel I’m playing a waiting game but so are many, and I have my faith.
I had my HA in January totally out of the blue st the age of 67, always considered myself fit because of the professions I had had. But what I learned from all of this, and to be honest I have never been one to worship the pharmaceutical trade , that every who was in the ward at the same time as I was were treated exactly the same and given exactly the same medication. I had to do my own research and through prayer found that firstly the cholesterol hype is a bit of a con. The doctors wanted to put me on beta blockers, even though I did not need them, every time I went for a prescription there was new medication, without consultation, added for the just in case scenario. Up until this happening I had been in the hospital system twice once for appendicitis age 8 and a double vasectomy age 28. Statins and aspirin were prescribed for life which I totally disagreed with. So after some research, which is open to everyone nowadays, I found that statins are prescribed for everything so what I did was after I had the results from my three month check which showed my cholesterol level hadn’t changed in 40 years coming in at 7.1 . So this is what I did , and it’s my own thing I’m not advising this, but I found a natural supplement called cholesterol complex which I take 3 a day I take a teaspoon of cayenne pepper mixed with tumeric powder twice a day. I cut out pastry chocolate crisps and rapeseed oil eat very sensible now as for exercise a lot of walking and using my road bike on a static frame my cholesterol is now down to on average 5.1 . I was blessed that it took me 3 days to go to A and E after my HA but only after the nurse at the local doctor told me it was not my lungs by then my RCA was totally blocked but again through prayer all the other veins and arteries had laid down new path ways. I have taken myself off all medication apart from the spray that is a just in case thing. Like most people still get a few aches and pains from the invasive testing. Other than that I feel great now. Looking at your profile name you should sit back and enjoy the Sun. Love Alicant
I completely understand how you feel it can be very confusing.You've described the situation perfectly though which is what makes it appear confusing.
The fact is we all have different experiences before we get a diagnosis and different treatments afterwards because we are all different.
Some people may have had a simple cause or obvious set of tests that meant they needed less tests , specialist appointments or treatments to be diagnosed and could be supervised by a GP.
Others might have had more complicated health issues or a more urgent or complex situation that impacted on what may be wrong with them so they required more tests , a number of specialists or various different diagnosis before they finally got a form of treatment plan.
Often , a person whose had a more complicated history , like myself , might have needed to learn a lot more about their condition and the treatments available because they also need to make sure it's suitable to use alongside other medications we use or doesn't trigger problems in other illnesses we have.
Then some people may have mild symptoms, or no symptoms at all and their condition was found unexpectedly, it may not require treatment yet just monitoring and some diet and lifestyle changes.
Some people have conditions that need long term treatment and lifelong changes to stay healthy because they can't be cured by a surgery .
Others can have had an emergency that sent them into hospital but a surgery , rehab and following lifestyle changes and taking some prevention medication can mean they have a new lease on life.
Sometimes it's the postcode lottery. Two patients could be identical but in one area they choose to always do lots of tests , in another they do very few but give the same treatments in the end with a similar outcome.
Some Consultants are great , some awful , it often depends on how well known the heart condition you have is as to how easy it is for a patient to get what they need no matter how many tests they do.
Whatever position you are in , it's always confusing at first until you learn a bit more about what you have and some good tips on self care to make it easier to live with.
That's why it's good to be part of a forum to get different views and experiences so that you can make more informed decisions about what you choose to do or if you need to ask for more help from your doctors if you don't think you are getting what would help you as an individual.
It can be hard to stay positive at times , but it's worth learning the way to keep hopeful , keep stress free and keep getting as much out of life as you can manage , take care , Bee
I came on here to answer Alicant , but you've pretty much already written what I intended to say! I would add that we are all individuals and our bodies are not machines; our health conditions vary in severity and there is no one treatment that cures everyone. Nor are doctors all-knowing gods. They don't know how individual quirks in our bodies are going to make us react to drugs or surgery, or indeed if there is another underlying problem that they haven't discovered yet. Specialists deal in probabilities: 'This works for most people with these symptoms, so there's a good chance it will work for this person too'. There will always be a minority of people for whom treatment has unwanted side-effects, and then there has to be a weighing up of whether the benefits outweigh the detrimental effects; in an extreme example, chemotherapy can damage hearts, but I think if I was suffering from an aggressive cancer, I would want to take that risk.
Thanks to the knowledge and expertise of my medical team, I now know that I suffer from familial hypocholesterolemia, but with surgery and medication on their side and a healthier lifestyle on mine, I'm reasonably confident that I can live longer than my father or his mother, who died of heart attacks when they were five and six years older that I am currently. In the meantime, I'm not going to sit around, worrying about every twinge and stitch - I've got too much to do, and I firmly believe that spending too much time dwelling on health problems makes them worse. For that reason, I flit in and out of this forum. I really appreciate the knowledge and support it offers, but if I feel it's making me spend too much time thinking about ill health (which can only have a negative effect on my general well-being), I take some time out and get on with living my life instead.
I moved over a 100 miles from black country to north west of England in 2019My old GP did an in house ECG and said I had LVH no heart medication gives.
My new GP sent me to see a cardiologist as my blood test showed heart failure. Like he said they really have to call it something different as people think they are dieing. He asked me if I had had an echocardiogram as I hadn't had one done not expecting to find anything. This then lead to having a bubble echocardiogram where they found a hole . After have palpitations ,heart flutters and being caught in A Fib on ECG referred to AF clinic . I have PAF and out on Flecainide and Apixaban.
2021 had MRI on my heart with dye . The hole isn't in the connections between the chambers of my heart but a little hole in the side. Apparently we have flaps round our heart which close before we are born the one between my heart and lungs didn't. But it's small. I do get breathless at times but as long as you don't get chest pain it's safer to leave it.
When I miss heart ,have palpitations or heart flutter . I just relax and it's soon over. I don't worry about as I know what's wrong and being on the heart medication helps me .
Plus all my life I have been in pain with my legs and fallen all my life. Had uncontrollable limb jerks in 1988 . Saw my first neurologist in 1992 ran all the tests available at the time but couldn't tell me what I have but what I haven't got . He put me on tablets to help with my symptoms. Didn't see another neurologist until 2017 after the sodium valproate and carbamazepine I had been taking since 1992 gave me jaundice.
My neurologist just ran the same tests . He didn't help me.
Moving here my GP sent me to the Walton Centre in January 2020 my neurologist didn't know what was wrong so put me on Clonazepam within 2 weeks after 32 years of limb jerks and 4 seizures my limbs where still and haven't had them or a seizure since. He sent my blood to have my whole genome genetically tested. Didn't get the results until March 2022. 1st April 2022 I finally had a diagnosis and it's rare I was born with hereditary Hyperekplexia gene mutation SLC6A5 type 3. The Clonazepam and diagnosis changed my life for the better. I am no longer alone or weird. I am on a Facebook group it's world wide and just over 1,000 of us there. My neurologist or his colleagues had ever had a patient with it. And Clonazepam is the correct treatment . It's not curable as it's in my DNA. But knowing what been wrong with me my whole life is very freeing . I am now 66.
My old neurologist in 2017 could have done what my new neurologist did but he didn't. So I sent him an email with my diagnosis and suggested if he does know what's wrong with a patient after the usual tests to have their whole genome genetically tested. Never heard back.
Knowing both things I was born with and having medication for both changed my life. It's better to now what's wrong than live your life no knowing . As I have lived like that and had abuse shouted at my because of how I walk and the limb jerks. Had doctors tell me at hospital before I saw my first neurologist in 1992 . Tell me I am mentally ill, attention seeking,a fake and a nurse shouted at me you only have post natal depression. Because in 1988 my children where 4 and 6 months when the limb jerks started.
My then GP knew me so well he knew I needed help took him from 1988 until 1992 to find the best neurologist in the country at the time who saw me.. I had to see a psychiatrist because of what doctors had put on my hospital records. And then when she cleared me saw other consultants to rule other health conditions out.
So you see why I say I am glad I have my diagnosis. Only wish my husband had lived to find out . He was fit and healthy but got cancer and died aged 47 in 2004 . I was 45.
I do don't worry. You take good care of yourself and get all the help you can . Try not to worry about things until you do. Live your life to the full and make the world suit you not the other way round. I have learnt to do the things I want to do but my way. My husband Nick was brilliant and adapted our home to make life easier for me. But I was a hands on mom only thing I couldn't do when the children were young was go out by myself. But I am stubborn and have a temper which I lose at myself daily.
When I moved here knew how I needed my bungalow adapted for my needs. I go to sit fit Monday afternoon and craft group on Thursday but find my week fills up with things I want to do.
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