Ds, 19, what are these symptoms??

[medianewbie]

Violent vomiting for hours overnight so thought just bad dose of D&V. But very sore chest. Sore neck (glands like 2 hardboiled eggs). No temp but shivery.
Pale, clammy, massive headache not resolving with ibuprofen / paracetamol. Any ideas what it might be (covid?)
We are due on hols in 12 days (1st flight ever) & would really like him well.

Clearly there will be a quick 'eyes on' discharge meeting in 'a few weeks'.
I called GP re more info / meds. He said: 'you know as much as I do but I can't see the point continueing them if he's ok now'. This GP is utterly awful but head of practice (need permission to move practice as next nearest one 12K away)
I've had previous experience of this Hospital when exH was bluelighted in & had no tests (inc basic bloods) & was sent home to continue to have heart problems.

So, although the letter may be standard / appropriate in the circs our 'lived experience' has not been clear or reassuring. So an equivocally worded letter with almost no details is not what we would have chosen at this point.

As a previously healthy young person who was told, 3 weeks ago he was in heart failure (LVSD as well as Myocarditis) hes had a bit of a shock. As a person with Autism & Clinical Anxiety it will take a bit longer to process than average. It would have been useful for him to had faster / clearer steer info about condition / recovery but that may not be possible so we will have to take it as it comes now.

He is still having frequent central chest pains (low level). Hes scared of going back to hospital. Im reassuring him that some 'settlling' pain is normal - we'll keep an eye & if we need to pop back in for a check it would be quick & easy.I think all we can do is now see how he fares over the next couple of weeks with the knowledge that 'all is well'. If he perks up enough then he may choose to go into halls 4 hours away in 6 weeks time. If not then he might need a gap year.

As I have said before I am a nursing student and a cardiac patient myself. I vehemently express that I am no expert though. I am a little concerned that your DS is still experiencing central chest pain. That is not normal. There is family history and his treatment was neither timely or seamless. I would be tempted to discuss this with DS (just to be safe before Uni) re getting the residual chest pain investigated at a bigger hospital with appropriate cardiac facilities and hopefully more understanding staff. You would probably have to to via A&E to begin with but chest pain should always be considered an emergency with existing cardiac history. The residual chest pain after all this time doesn’t sit well with me. Blowing off a previously healthy kid like this doesn’t sit well either.

If your local GP and hospital are poor, then getting it reinvestigated at university seems a good idea for a second opinion.

Completely agree, as a patient who had myocarditis a few years ago (post-MRNA in my case). I had ongoing pain and a follow up MRI found issues. I was also taken off meds early and later put back on them long term as a specialist cardiologist said they prevent fibrosis.

Good news is wretched GP didn't mange to charge me the £95 for the form as insurance Co accepted hospital Dr signing. A small victory (& some £ refunded)

Less good news is Ds is still incredibly tired. We went out for 2 hours on Sat.
He felt unwell so we came home. It is mostly exhaustion but he is still having low level central chest pain. GP not interested so we'll have go back to A&E (where they will test for T levels, say to expect it & send home as before?)

We've had an date for Discharge appt end August.
I will start a separate thread for advice what to ask I think as v little info re MRI.
I've joined a couple of FB groups re Myocarditis.
Clearly, it is hugely varied in terms of treatment & recovery periods.

As you seem to have health insurance I suggest an alternative to A&E - request referral of GP to private cardiologist asap for “second opinion”.

A&E is not the the place to diagnose the nuances of a heart condition. If the ecg looks ok they may not ask cardiologist to check him over.

@Mirabai the insurance was only holiday related sadly. I don't have private health insurance. I agree A&E is a blunt instrument. But Cardiologist says GP or A&E if continued chest pain. I can't even get a phone appt with GP for 3 weeks so not sure what else to do in circumstances? I was hoping he could get a better service nearer a larger hospital when he went to Uni but he's not able do to do much at all atm so unless something changes I can't see him moving away in 6 weeks.

This makes me really angry - that myocarditis could have been avoided if the side effects had been pointed out at the rollout of the V.

I know a mum and daughter who both developed it after the vaccine. I know a minimum of twelve people who have developed sudden heart problems since 2020.

I'm not usually one to suggest gaming the system, but could you and your ds go and "visit" friends in the Central Belt and he could "have a turn" while visiting, requiring a visit, say, to the Queen Elizabeth A&E?

Ds' girlfriend was seen very quickly at its A&E when she had breathing problems. She'd not long moved down to Glasgow and hadn't yet got round to registering with a local GP (was still registered in Aberdeen).

How much do you have in savings? £1500 might do it incl heart ultrasound, MRI, 7 day ECG, + 2 appts.

The GP doesn’t get to be “not interested”. I would make an urgent on the day appointment next time he has chest pains and see someone other than the head GP. Insist he’s referred to cardiologist for follow up asap.

@prettybird I had wondered if we had a day in Edinburgh & he had chest pains & I took him into A&E. But wouldn't they just do a blood test & if Troponin is low just send us home / refer back to GP?

@Mirabai I could phone at 8am & say he has chest pains. I suspect GP would send us to local A&E. We have a Consultant Cardiologist appt end August. I don't suppose they'll bring it forward & this Consultant is not keen on sharing info anyway. Certainly if we get no more info then I'd like more advice ? Does NHS GP have to refer? I guess I could call (Bupa?) & ask costs? I'd like to know if anything can be done about the chest pain. He's miserable.

Sorry, don't mean to he negative. I'm grateful folk are still replying to this.

Hi
That sounds a horrendous experience for both you and your son.
Is there a way you could.get a referral/him seen at the Golden Jubilee Hospital in Glasgow? I believe they are Scotlands leading hear hospital,for.so I've been told.

Hope your son gets sorted soon.

You have the right to any info from the cardiologist that you like.

Can you call his secretary or his dept booking line and put yourself down for a cancellation?

If you ask GP for private referral letter they can’t really say no.

gp may not need to refer, when paying privately I self referred and when it was involving bupa membership, I was able to get a referral off a private gp via bupa.

Think you mentioned there being another GP practice - can you register with a different GP instead, and try for someone more helpful?

Me too. I had myocarditis after a Covid vaccine and it has caused scars. I was in hospital with it and there were others too so not that rare. I hate to think how many others had what felt like heartburn and exhaustion, but either put it down to those issues or were brushed off.

There needs to be transparency and accountability so people know what to look out for and get treatment quickly. Otherwise there can be flare after flare until it lands someone in hospital.

If it is not diagnosed it is really dangerous as someone may try to exercise hard.

@Hello1234456 I'm not clear it's post vaccine. The Consultants were very interested in that (which vaccine etc) until I said he'd not had a vaccine for about 2 yrs then they dismissed it completely. Could it be, so much later?

I'm interested to hear of your experiences. We've been told Ds has 'scarring of ventricle' but no more. What should we ask when we see the Consultant? Is it normal he's still having chest pain & is totally exhausted after 2 hrs out of house ? (eg today - opticians then McDs - total 2.5 hrs. He had to go to bed when we got home.

I appreciate everyone's different & you cannot give medical advice but I'd be interested to hear more if thats okay?

Hi @medianewbie For me that type of tiredness was and still is an issue. My case was really severe and also included an autoimmune reaction, plus I am old, so your son will hopefully recover much better.

From the Drs treating me and people I met who had myocarditis there seemed to be a few different categories. One was the clear reaction where people ended up in hospital within days of the first vaccination. Another category was where they had a reaction after the first vaccination but it was not clear (it may have been bad but they did not realize it was cardiac) then they got a second and myocarditis was diagnosed. I heard of others (some I have had contact with) who had issues post vaccination they did not realize was probable myocarditis, then flares with Covid.

In my case and others I know of/was told about, there has also been an autoimmune reaction. The initial blood tests are Rheumatoid factor and ANA. I was put on low dose steroids because of this. Immunoadsorption helped in my case.

according to a specialist cardiologist who treated me there should be medication after the acute phase. ACE inhibitors, etc., to reduce the risk of fibrosis.

I would rest as much as possible until he has clear answers. Ask for a 24 hour ecg. A follow up MRI. When the inflammation has gone a stress test.

He had had Covid recently though hadn’t he?

I had myocarditis after a virus at 18. In those days there were no MRIs. I just had beta blockers and bed rest. If he’s knackered I would take it very easy indeed.

It didn’t develop immediately though.

@Mirabai yes last November

OP can you find out from internet the normal range of recovery times? It seems this concern is stressing you the most.
As for cause there were many more cases of myocarditis caused by Covid than by the vaccine. Plus there’s the “spontaneous” cases ie no covid and no vaccine.
In fact OP that whole subject is a giant red herring. Who cares what the cause is, best you try to find out the reasonable range of recovery rates and times and go from there.

Having been through it I would really want to know the cause. If it was Covid or Flu a vaccine may be recommended by the cardiologist. If it was the vaccine he may need to avoid, at least until the cause of these reactions is identified.

The other thing is there seems to be a variety of timelines and treatments depending on the trigger. Are there any studies at the main teaching hospitals in Scotland? You may get some answers this way.