Myopericarditis 18 months now. - British Heart Fou...

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Myopericarditis 18 months now.

Granolalo profile image
8 Replies

Hi, I am a 39yr old male who was diagnosed with Myopericarditis in August of 2023. I first developed symptoms of feeling unwell in February 2023. I had COVID twice in 2022. On march 2023 I developed severe chest pain alongside cold sweating and left arm pain. Blood tests were normal, troponin levels normal. ECG was abnormal. I had echocardiogram, cardiac MRI, cardiac angiogram which was normal bar a mild plaque on one artery. I was diagnosed with with pericarditis at the time and sent home on colchicine after a month of been hospitalised. I continued to have severe chest pain. My heart felt in severe pain all the time and couldn't lay on my left side. I couldn't stand up without heart racing and severe chest pain. Heart rate would randomly increase to over a hundred when lying down resting. Multiple trips to a and e with normal testing. I got a second opinion from another cardiologist who later diagnosed me with myopericarditis based on my previous ecgs which where all erratic according to him. He prescribed GTN and imdur. GTN helps with the pain. Sometimes when really bad imdur can help to get me out of bed. I was prescribed these on a when needed basis. Benefits are usually short lived and heart will be really sore after walking any distance inside the house. The cardiologist said with normal tests prognosis is usually good. Although I can now lay on left side I still have pain standing up or even walking to the bathroom. I generally am bed bound. I have to fight to get up on my feet. I have tried everything from carnivore diet to keto to supplements and small exercise sitting down. I am 18 months in now and not much better. Any advice would be appreciated or if you could share what helped you. Thanks in advance.

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Granolalo
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Identiy profile image
Identiy

Very strange.

I would have thought that a Holter monitor which records all your heart beats for several days would be in order . This may give clues as to why your heart rate fluctuates to the extend that it does

Granolalo profile image
Granolalo in reply to Identiy

Hi, IdentityThanks for your response. The first cardiologist consultant I seen on first admission ordered 72hr holter monitor which He said was normal. While I was in hospital this doctor went on leave and another Consultant covered him. The new consultant asked the junior doctor how were my ecgs. The junior doctor said they were normal but when consultant looked at them He said no these are all erratic. This consultant ordered cardiac CT scan which then led on to having cardiac angiogram which showed nothing of significance. I was in hospital nearly four weeks before tests were done. I might add that leading up to the event I developed mid thoracic spine pain as well. I had an Mri which was clear. I had significant testing done but no clear answers. The second cardiologist diagnosed myopericarditis based on abnormal ecgs and symptoms I was experiencing. The heart doesn't feel as sore as it did or beat extremely fast out of the blue for no reason and I'm not as breathless as I was at rest but the pain and soreness is very severe when walking any distance (5-10 metres).

HHH2017 profile image
HHH2017

Hi, I'm so very sorry to hear this, you really are suffering. Has anyone suggested Long Covid might be part of the mix too? My brother in law has LC & pericarditis.

I had myopericarditis 7 years ago. I suffered similarly to you for 2 years. Then slowly, gradually was able to start doing a little more each day.

Hot water bottles used to help with the pain otherwise it was just, rest, rest, rest and allow my heart to get over the huge shock it had had.

My heart was quite enlarged throughout & remains so and is also quite scarred. I have a new normal now, I can nolonger climb the lovely hills of the lake district and try to avoid any inclines. But I can walk on the flat, swim, canoe (v occasionally) and play with my grand children. I had to give up teaching but do work very part time again now. As you didnt have enlargement, high tropinin levels and nothing notable on any scans I sincerely hope you will make a very good recovery once your heart has got over the almighty SHOCK it had.

Do talk to the BHF nurses on here for tips and advice they are v knowledgeable & supportive. Wishing you answers & improvements soon.

BHF nurse helpline
Granolalo profile image
Granolalo in reply to HHH2017

Hi HHH2017Thanks for your response and kind words. Happy to hear you are doing well. We always have to try and look at the positive side of things and try not to lose hope. It's always nice to have time with family. Sometimes When we are working all the time we may feel like we haven't got enough time to spend with our family. Before I became unwell I worked as a Healthcare Assistant in the community. I haven't been able to get back to work yet. As you said there could be an element of long covid which is highly possible as I went down hill after getting it the second time. I've read that vitamin e with mixed tochotrienols and coq 10 is very beneficial for the heart combined with a ketogenic diet. It may be worth looking into. I take these supplements as well as taurine. There was research showing taurine reduced inflammation in myocarditis so I take that every other day as well. Thanks again for your response.

Brambles_Mum profile image
Brambles_Mum in reply to Granolalo

Hi Granolalo, you say you have started taking taurine, but magnesium (especially magnesium taurate) is also very important for heart health. Do you supplement with magnesium at all??

maoi.org/health/magnesium-t...

Granolalo profile image
Granolalo in reply to Brambles_Mum

Hi, Thanks for your response.I currently supplement on magnesium glycinate which has glycine added , I took magnesium taurate before which is the form that has taurine in it. The taurine I take is 1000mg which I take every other day. I also take co q10, vitamin e, b1, vitamin c and omega 3s. I find If I supplement every other day to be therapeutic but If I supplement every day it can aggravate symptoms.

Brambles_Mum profile image
Brambles_Mum

Glad to hear that you are taking some good supplements, that is really important and hope your condition improves soon Granolalo. 👍

Granolalo profile image
Granolalo

Thank you for your response and kind words. 👍

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