I'm a 44yr old male with no family history of heart problems.
I have recently been diagnosed with Myocarditis. It started 3 months ago after finding out that my best friend had taken his own life. I had chest pains and they got worse if I tried to walk or lift anything. I went to A&E who thought I may have had a heart attack although the blood test showed no markers. I had an abnormal ECG (LBBB) and my efficiency is down to 50%.
I stayed in hospital of 3 days then got discharged. to go to see. cardiologist. After a few weeks I decided to pay to see one as I was worrying about what was going to happen to me. I still had (and have) constant chest pain and it gets worse after even the slightest exercise. Weirdly if I sleep on my left I always wake up dizzy and breathless.
The private cardiologist diagnosed me with suspected Myocarditis and gave me a private prescription for Amlodipine and Cochline, saying I could get them from my normal Dr. He gave me a months worth. He called for several blood tests (£820 worth) but I have yet to hear if they were clear. The secretary told me that if there was an issue they would let me know. I tried the pathology department but they just take the blood and the lab only sends the results to the Cardiologist.
After a few weeks I spoke to my NHS surgery and the dispensary who wouldn't give me any more tablets unless I saw my Dr or got a letter from the Cardiologist. The Dr's appointment is mid Sept so I have been off of the pills for a few weeks now and it's hurting again. The private cardiologist won't reply to my pleas for another private prescription and I don't have another £250 this month to visit him again. Im worried that without the medication it could be doing damage that I won't recover from.
It seems that because I went private, the NHS are no longer investigating (i'd incorrectly assumed I could do both in parallel as I am already paying twice).
I am booked a Cardiac MRI mid Sept so that is when I hope to get a firm diagnosis, I will save up the £250 to go back and see him to get all of the results in 1 go.
I have two young kids and its hard telling them that I cannot come out on a walk or out on our bikes as it hurts too much and I am worried I might drop dead.
My work is busy and I was required to travel to Germany and Canada but was also advised not to fly due to the Myocarditis. I feel like my career is now at risk as well as my general health. I am still working as normal as nobody told me not to.
I just feel alone and that if I didn't self fund my care, I would still be waiting.
As it stands I don't know if I had a heart attack, if it's Myocarditis or if it's something entirely different. I had to carry a small box upstairs this week and had to go to bed afterwards as I felt so bad in the chest.
Im worried about being a news story where opportunities were missed and as a result I died.
Three months on and I am not feeling any different than the day I went to A&E.
I don't know what else to do. I had even considered travelling to a cheaper country to have a full diagnostic suite carried out there, but I cannot fly.
Is it really just a case of waiting?
Written by
Froopy
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Reading your post you certainly seem on a rollercoaster which you need to get of and have some answers
I am so sorry I do not have any to offer hopefully others will see your post and maybe able to help but the BHF Nurses are really good and I think talking to them would help and I would give them a call and see what advice they could give
Let us know how you get on x
Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm
sorry my reply is brief as heading out but wanted to ask if your cardiologist wrote to your gp (or you) to document your first private consultation? They should have, and this should be enough for your gp to continue an nhs prescription for the medication you need. If you have not had a letter of some form, insist on one! This is what you paid the £250 for.
I'm very sorry to hear about your friend and situation regarding your treatment.
I would insist on an urgent doctors appointment, they will take notice of the private doctor. As soon as you tell them it's heart related they should take notice.
If not, I'm affriad the only way back into the system quicker is to go to a and e and tell them things are worsening and you can't breathe etc.
If your EF is 50% then that is considered normal by many, 55-70 is the normal range
Mine was 24% when I was admitted, and many on here far lower than that.
I think you need to know the cuae of the pain, and only the MRI will tell them.
Unfortunately unless you pay for the MRI you will not get one quicker. I had to wait over two weeks when I was admitted 18 months ago and I was quite ill and could not breather properly, I was also 44 at the time.
Mine was dilated cardiomyopathy. Severe heart faliure., bundle branch block and severe mitral valve regurgitation.
Mine was through lung infection they said and this caused the stress on my heart.
Being slim, non smoker who ran half marathons this was quite a shock as I'd been to the doctors numerous times for 6 months to tell them something was not right.
You have to push them and dint take no for an answer. If I'd been diagnosed early then I would be ina. Far better position than I an now.
Also got two kids, the bead winner in our family and am a very active person usually. Now tired and linked as to what I can do.
So my advice would be to
1. take ot easy for a few more weeks until scan and reaulta are back. Try not to stress as this is not good for you
2. or borrow the money for the scan and consultation. It's worth it.
Either way, dont eat a salty diet. Keep fluids down to 1.5-2 litres a day as more volume puts pressure on the heart and do not lift heavy weights .
Walking is good unless it males you feel ill of course.
And swimming is also quite heart heavy so avoid till.you see a doctor.
Try not to eat processes food and sugary food. Sugar in inflammatory, and will not help your myocarditis one bit. You need to do the opposite. Read about food which will help this process.
If you do smoke quit. This is the worst thing you can do.
Good luck with it all, .myocarditis tends to get better on it's own and quote quickly. I hope this is the case for you.
Dear Froopy, I had myocarditis a few years ago, and was told to rest in bed. The pain should go. Try putting some ibuprofen gel on your chest, and that should help. I am affected by suicide as well, and I am on medication for it. Sorry to hear that. Kind regards, Rabbit55.
Hi, Im so sorry to read your post and the lack of support you have had.
Please be reassured that myocarditis can get better with COMPLETE REST.
The meds would help but not the be all & end all. REST REST REST is needed.
Id advise a trip back to A&E or GP for blood test for your tropinin level and to get on a heart monitor. Hopefully they will follow up with an ecg at least.
Your heart is a muscle and it has been badly strained by the myocarditis. Just like any strained muscle (and this is a big important one) it needs time to rest & recover.
I was in hospital for 3 weeks and 6 months recuperating at home but I had an acute case so hopefully your recovery will be quicker BUT the more you do in these early days the longer it may take.
You should get signed off work by your GP. Overdoing it causes 1 step forward & a dozen back.
Your children will understand if you are clear you must completely REST, let them help look after you. REST really does work, if you search 🔍on here for Myocarditis you will be reassured by lots of posts saying REST is BEST. Not easy in our busy lives but essential. I was a teacher, and had to take six months off which I found v hard.
Please don't beat yourself up about not being able to do even the easist of tasks (going upstairs is actually a hard task) be kind to yourself and you will steadily recover and the pains will slowly become less as your heart gets over the shock it has had. Pls go back to A&E/GP asap so you can be signed off work, get a definite diagnosis and safely take TIME to REST. I wish you all the very best.
I had Myopericarditis (inflammation of heart and lining of the heart) it takes months to heal and feel ok so you need a sick note from your GP and rest rest rest then it should eventually heal and you will feel better. Get investigated as to why it’s happening to you as well. Don’t take no for an answer. Good luck and hope it improves soon.
perhaps email your private Consultant’s secretary explaining exactly what has/is happening, pointing out the situation regarding your GP and lack of continuing prescription. If necessary you could request a phone consultation as they are usually less expensive….particularly if it’s a follow up appointment. I wish you good luck going forward; you need and have a right to answers!
I emailed my situation to them every couple of days as soon as I heard the NHS wouldn’t give me the pills. I had two weeks worth left when I started emailing. They reply to some things but it seems very much that you have to pay to get traction. When I first went private I had to have another ECG and didn’t realise that it would be another £215 plus £30 for the chap to read it!
thanks all for your kind replies. I’ll take it easy and wait for my scan on the 13th Sept. The earliest NHS GP appointment was the 12th of Sept so I will sound the doctor out with regards to meds and attending work. I’m office based so it’s not physical work.
I explained the meds situation to my cardiologists secretary but they didn’t even reply to me. They had replied up until that point.
I don’t see the value in going back before the scan so I will pay to go back after and then take it from there. At least this time I’ll know to ask for the letter as well as my results.
I am so sorry to hear of the frustrations with the NHS, GP and private.
I think you need to talk with BHF team and book yourself in for an URGENT GP appointment.
If you are unwell you must ring 111. If they advise going to hospital that will speed up the tests.
It's very hard to when you there is a big divide between NHS and private. You have the right to go private to speed up the process and not be prejudiced by the NHS for this.
If you have the details of your NHS Cardiologist - ring or send their secretary an email. It doesn't hurt to try.
Whatever it takes for your health and to be seen and heard.
Hi, you seem to be going through the mill and the system is not helping. I have no direct experience of this condition, if indeed that is what you have. An ECG cannot on it's own be specific. Your GP is the gateway and you need to see him/her. If there are other partners, is one known as the better doctor? That's the one you want.
From what I see you cannot fly, period. You must avoid exercise where possible and you need to watch what you eat. Cut Sodium, processed foods etc. Be hydrated. Did the GP make a referral to the private doctor? It seems not but there is no reason why the GP cannot arrange to phone that person and find out what is going on. It seems the private doctor is fairly useless and I'd tend to avoid. Surely your GP can insist on your records and results being transmitted to him. Can't you insist, though you need to avoid stress. You perhaps need an Advocate and many suggestions here point the way. Without a firm diagnosis you do not actually know if you have this. Did you have Covid? Did you have another virus, which seems the main root to this condition? As usual, more questions and answers. Rather than act like a doctor and perhaps lead you in the wrong direction, have you seen the following from the British National Formulary? If you cannot get something sorted quickly, I think that A &E is your best recourse. They can get Cardiology immediately. Three months? Unacceptable. BTW, sleeping flat or on your right may help.
thanks all for the kind comments. I had my cardiac MRI and was able to book the cardiologist the following week. It does indeed confirm myocarditis. There is some slight swelling now but no signs of damage and only borderline loss of function fortunately. The cardiologist was suspecting it’s a hangover from when I had Covid or another viral infection.
either way he suggested no exercise for 4 months and rest where possible. He did say I could fly but did mention that the last thing I need at the moment is to catch Covid or another virus.
I need to pop back in a few months and have another Cardiac MRI in a years time.
I’ve bought myself an electric bike and I’ve been out enjoying the last of the summer sun in the fresh air (fully assisted so I just have to slowly turn the pedals under no load to make it go). I think this has probably been the best thing I could have done for my mental health. It’s also made it possible for me to take my kids out on their bikes. The bike has a throttle mode that can be enabled so I don’t even have to pedal but it seems it’s against the law to enable it in the UK. We have the least progressive laws for something that could halve the cars on the road.
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