Sorry for the morose post, but I thought I'd share my feelings with people who may be able to relate. Today I had a near-fainting episode, the cause of which I have no idea. Its just one thing after the other, and every time I think I'm getting better and can get through this, something else comes along to whack me down again. I'm having panic attacks on an almost daily basis, and my symptoms seem to be getting worse. I have an appointment with a specialist on 6th July, which I had to try extremely hard to get. The health service aren't taking my case seriously, which I know may come as a bold statement, but its saying something when you haven't had a clear-cut plan of action having first being diagnosed 8 months ago.
I'm 23 years old with a condition that is almost unheard of in people under the age of 50. Surely that should strike alarm bells in those within the medical profession? Surely they must look at the data and ascertain that my case has a higher probability of being something serious because of how rare it is in my age group? What can I possibly do to make medical professionals take me more seriously?!
It feels like I'm fighting a losing battle. Without proper support I feel naked, alone, and above all, frightened.
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micwal93
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So sorry to hear you are feeling so overwhelmed. We've all been there in one way or another with this. But I get it that an AF diagnosis at 23 has to feel really scary. I've been seeing more and more people in their 20's and 30's with AF, so you are not as alone as you think. Lots of runners and cyclists get AF because exercise at a very strenuous level is one of the things that increases your risk. I also know several people who had one episode in their 20's and so far, more than a decade later have not had another.
I remember, that when I was diagnosed at 50, they told me that it was only a disease o 80 year olds! I hope you soon find a doctor who will listen to you and partner with you to find the best approach for you.
Truth is, AF is the most common rhythm disorder. And we all find ways to live around it, and most of us do quite well. I hope you can find your calm space so the panic attacks can decrease. Some yoga and meditation might be a great way to help. Also, let this be a little warning to you to make healthy diet and exercise choices, and to get good rest and relaxation. It all makes a huge difference.
At any rate, we are always here to listen when you need to vent. Be well.
Hi, so sorry you are finding it so hard, I was very scared early days, be assured there are people in here that have said are in 20's unfortunately, you may have (like me PAF ) which means your not in permanent. AF, so possibly not have another for years, I have only had 3 in just over 2 yrs. This condition does not mean you have any other heart problems, my heart ultra sound showed none!! You don't say if you are on medication? I started on a beta blocker (bisoprolol) which had to stop as made me very light headed and weak, so if you are you can ask to change it
also you say your appointment is 6 June!? Maybe you meant July, if so it's not long, let us know how you get on, try to relax and think positively, best wishes
Before I was diagnosed with AF, I'd never heard of it either or so I thought. I was then reminded of a girl who had been in my tutor group who had a "heart problem", by her brother who was, as it happens, now in my tutor group too. She actually suffered from AF and had a successful ablation at age 19. Soon after, three more AF sufferers came to light in my immediate work environment (two of whom also had successful ablations). The point is that there are more sufferers of the condition than you might think. It is a sh*t condition that makes you feel weak and vulnerable. Drug regimes can really help and flecainide was brilliant for me for over a year. However, after 5 years of steady deterioration, I eventually went for the PVI cryoablation and have subsequently had no AF in over a year. Be brave, get informed and don't be afraid to try anything. QoL should be the top priority. My only regret was not taking the ablation route sooner but fear was a huge factor in the choices I made. Good luck to you!
Don't be afraid of expressing your feelings about your problems. We all understand what you are going through. It's a rotten affliction. Explain to people that you have an electrical problem with your heart
On a practical level, can I suggest that you keep a diary record of your medication, attacks and problems. Give a copy to your consultant as it will show the extent of the problem and you do not risk forgetting to tell him something important.
Good luck with the consultation and keep in mind that AF won't kill you.
So sorry to hear that you are feeling down. You will learn to cope with it and take it as it comes. I feel like it's just a damn nuisance. The Meds can certInly make you light headed and feeling nauseous. Keep your chin up.
You poor thing! I am pretty sure I first had af in my 20s but put it down to over-doing things.... working too hard.... maybe partying too hard! But retrospectively I was a keen cyclist too.... Anyway, it came and went over the years and each time I had to slow down and pace myself with whatever I was doing. It always passed. I think it is not regarded as dangerous when you are younger, but that does not mean that the doctors should not provide support for you.
Now, wait til you hear this. I had to hire a taxi to the hospital for my ablation last month and the taxi driver asked me what I was going in to have done. When I explained... he said that his 16 year old niece had just had the same operation.
He said she had a rogue rhythm and they had ablated it. So you are not the youngest to have af and, here in London, they clearly treat young as well as old!
I had issues getting taken seriously as far as the doctors were concerned I was fit and healthy apart from the odd bit of AF AF. I also had some very low pulse periods so I bought a chest strap heart monitor (not expensive) and ran an app on my phone. I photographed daily record at rest sleep and excercise and took them with me to appointments and eventually got a cardiologist that took me seriously had the heart muscle checked through an echo cardio grammar under stress. An angiogram me to check the blood flow and it was tied down to an electrical issue. Now Post ablation nearly a year on I have a perfectly functioning electrical system and a lifestyle change. 2 stone lighter and running between 69 and 99 mile a month. Be persistent insist ant and keep daily records to show what is happening because Sod's law says when they do the ECG or examine you it won't be happening. Good luck hope it goes well for you
Polar H7 Bluetooth then connect to a decent app. I use one called Heart Rate it's free and the App is a white heart on blue background gives an accurate and simple trace graph in real time. Don't let the results consume you like I did for a while. Use it as a tool to try and control symptoms and as a record to convince the Dr's
Your story sounds so familiar! please don't let it take over your life as I did for a while, As far as I was concerned a few years ago I was the only person suffering these horrid episodes ad also felt that in the early days the medics apart from my GP were not taking it seriously. It was a massive deal to me, I had my first AF episode while undergoing a C section aged 34 and then over the years after gradually becoming worse. am now 50 and have had a pacemaker fitted and life is good apart from the odd hiccup,I have my life back.
This website is fantastic with lovely people with loads of knowledge and insight so never feel guilty having to vent your feelings on here or share your worries, we all understand.
I'm sorry that you are still having upsetting episodes and I can understand the worry and anxiety that these cause. Well done for perservering and getting to see a specialist - is it on 6 July, not June? If so, as jennydog has suggested, keep a written record of your events to show the cardiologist. Have you a relative or friend who would accompany you to the consultation, as it can help to have someone to remind you what was discussed and help put points. I always go alone and invariably forget an important point - even though they are written down.
It's so easy to say but try not to feel it is taking over your life - you need a treatment plan, which obviously has not happened yet, and the knowledge that AF has been taken seriously and put into the background of your life.
Best wishes with your appointment - and keep in touch in the meantime.
Hi there I can't add much to all the excellent replies so far but wanted to say that although I'm a lot older than you, at 49, I too felt way too young to be saddled with a heart condition.
However it's amazing when you start asking how many people have it young, even in their teens...my EP (cardiologist specialising in heart electrics ) is treating two teenagers as well as many in their 20s and 30s. I think the reason is that the technology has improved so much in the last 20 years that many more people are.being diagnosed when years ago they.would have just toddled on unaware. I liken it to glasses wearing in childhood - the technology and testing etc are now so good that eyesight problems are caught early in a mandatory screening programme at age 4 in Scotland, whereas before you just strugged to see the blackboard for years and maybe got branded a thicko 😀.
Please also bear in mind that although it feels counter-intuitive to accept that something which feels so weird does not mean there is something more serious "wrong " with your heart it really doesn't. The electrics, while important, don't govern the process by which heart attacks happen for example.
The two main things which cardiologists try and address with AF sufferers are the risk of stroke and symptom control. Your age makes stroke risk vanishingly rare anyway and your symptoms can and will be helped enormously by the right medicine, ablation if that's your choice and appropriate, and lifestyle changes. Now that last one is a biggie and not something you may find your doctor makes enough of. There have been a number of recent studies which emphatically draw a link between weight loss and reduction in frequency of AF. If you are overweight, sort it out now.. don't leave as trust me it gets way harder with age. If you smoke - stop. If you party too hard - cut back. If you rely on coffee to get through a day - stop that too. It takes about a week but you will feel great after I promise
Stress is a big trigger for many of us and many people.have difficulty telling the difference between an arythmia and a panic attack. Find a way to relax your body and mind -many use yoga and mindfulness can also be most effective.
Finally (!) Look up the NICE guidelines on Atrial fibrillation. These outline what procesa your treatment and diagnosis should follow. I have found in the past that referring to these guidelines in a GP consultation makes them take you a lot more seriously. If you have the funds (I know at your age it's unlikely) but if you do then ask for a private referral to an EP - in NE Scotland that cost me £150 and the subsequent ECG a further £350. But for £500 I got excellent advice in an unhurried environment and you can get referred back to NHS at any point
Either way stay calm, bring notes, talk about quality of life and refer to NICE guidelines.
Sorry to hear someone gets this at such a young age. Remember that it is advisable to do at moderate exercise even when in AF. A good hike in the Brexit, I mean British, outdoors may help that mood.
I was diagnosed with PAF at 34, a bit older than you but still younger than what we think of as the typical AF patient. In the four weeks or so after diagnosis I felt a lot like you do. I thought the condition was ruining my life. I would look at people in public and be jealous of them because their problems couldn't be as bad as mine, what with their perfectly functioning hearts and all. I felt defective, and that I was letting my husband and kids down.
But as time has passed I've felt so much better. I saw a specialist who was very good in reassuring me that I would be fine (I am). I worked hard at not letting the anxiety and stress get out of hand as that seemed like a huge trigger for me. And I realized that everyone has problems. If PAF is the worst thing that happens to me then I'm actually doing really well in life. I also think the passage of time helped a lot too.
Everyone seems to say that afib only gets worse. In my case, so far anyway, it's actually improved a great deal. I hope you have the same experience.
Micwal, you don't say just what your condition is. Is it AF, and nothing else? Is it a variety of odd issues that don't seem related to each other but drive you nuts? If you have a clear diagnosis that doesn't leave anything out, then go with that. But if your issues aren't explained by one or two diagnoses, then I strongly suggest you look into mast cell activation syndrome (MCAS).
Mast cells are the body's first line of defense and they populate the entire organism. I mean they're everywhere. Just for example, there are about 5,000 mast cells in a single cubic millimeter of conjunctival tissue (the inside of the eyelid). They're pretty sensitive, and their job is to alert the immune system when they sense anything out of the ordinary. They release histamine, which causes inflammation, as well as a host of other signaling and inflammatory substances.
If you want to pursue this, you might contact a hematologist. That specialty seems to be the most likely to have someone who knows about MCAS. I'd also suggest getting the book "Never Bet Against Occam" by Dr. Lawrence Afrin, one of the foremost experts on MCAS. It's about US$15 at Amazon.com.
I'm speaking from the perspective of dealing with an awful combination of disabling symptoms that came on right after my ablation a year ago. It turns out some aspect of the surgery triggered the disorder, which was probably already present in a mild form. I've found a treatment to stabilize the mast cells, and am experimenting with a variety of other possible treatments.
My dear young friend . You are indeed very young to go down with this complaint & from what you tell us I don't know what diagnostic tests you have undergone or what treatment has been prescribed or recommended.
Push for a radical treatment not a handful of pills twice or three times a day for the rest of your life . All of them have side effects & these are sometimes worse than the actual complaint. There are procedures available which may clear up this condition that has beset you at such a tender age & you may be restored to Sinus Rhythm as I have & continue on to live a full & active life .
Your appointment with the `specialists is two days following my 85th. birthday & my first attack of AF was inside of the Rock of Gibraltar in 2007 . I now remain in SR & take only a small dose of a beta blocker daily & an anti - hypertensive tablet.
Do not be despondent. You will win through . I hope to hear better news of your successful treatment.
I am the `Ol`Timer` & I exemplify the objectivity of not accepting defeat. Be positive & push for a cure. You are too young to put up with this condition for the rest of your days.
I am a bit older at 36 but still considered young for the average AF sufferer. I was diagnosed 18 month ago and can totally relate to your state of mind. For me the anxiety of the unknown made things a lot worse and caused several panic attacks and I was convinced I was about to drop dead. I went to A&E when I was having one of my "weird turns" and they caught my AF on the ECG. I then got an appointment with a specialist. For my just understanding my condition lifted a massive part of the anxiety cloud, I realised although uncomfortable at times its wasnt going to cause me to suddenly die. I've been on a real roller coaster of emotions in the last 18 months, but I am finally seeing light at the end of the tunnel. It does get easier, trust me! I've just had an RF ablation a week ago, this is a procedure that targets the problem areas with radio frequency. I now feel great and my heart is ticking away like a fine Swiss watch. Just try to remain positive, understand as much as you can about your condition if it gets diagnosed and keep thinking that worse things can happen at sea! Good luck and keep us posted
Although I am old enough to be your grandfather, here are some things that worked for me and for our 43 - year old son, who has anxiety and panic issues. Diet and exercise, particularly yoga, are extremely helpful. I heard about a company in the UK, GW Pharmaceuticals, that is investigating CBD (Cannabidiol) as a non-addictive treatment for anxiety and the stress caused by such. Cannabidiol is a derivative of the hemp plant. I located it in the US (our FDA has not banned it so long as no drug claims are made by the manufacturer/seller). Our son has began taking it and it is helping his anxiety.
Severe anxiety can put a stress on the heart. Many years of such and the resultant stress are what I believe caused my afib issues (sudden cardiac arrest followed by cardioversion and defibrillator/pacemaker implant). I have no other health issues other than old age. I made the decision to eliminate my stressful activities and am on medication and an activity schedule that pretty much controls my afib. I sincerely believe that a critical part of healing is a lifestyle change - whatever it takes. Your health, particularly at your young age, is one of the most important aspects of your life.
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