Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Anyone had experience of dilated cardiomyopathy or ARVC (arrhythmogenic right ventricular cardiomyopathy)?

30 replies

splishsplosh · 19/04/2008 10:50

I've had occasional palpitations for nearly 20 years, but 1 had them almost every day for about a year a few years back, so went to the GP, and was referred to a cardiologist.

They've done various tests, never really told me much, then after dd was born told me to come back in 2 years. So I've been back, had a few more tests, and last week they told me they think I have either of these conditions. But it's not certain.

I'm pg at the moment, so that restricts what they can do, test-wise.

I'm not on any treatment, and they didn't give much advice, other than avoid stress, and seek help if I suffer any symptoms, and I have to go back in a couple of months.

But now I've been googling (silly I know) and feel more worried. It does seem to vary from sudden death, to not so much of a problem... anyway, I just wondered if anyone out there had any knowledge / experience?

OP posts:
Original poster
splishsplosh · 19/04/2008 20:28

Anyone???

OP posts:
Original poster
splishsplosh · 19/04/2008 21:12

Am I alone in this?????

OP posts:
tissy · 19/04/2008 21:14

no you're not

I think there are a couple of MNers at least who either have it or have dh's with it. Keep bumping and I expect someone will be along soon.

wrinklytum · 19/04/2008 21:17

Hi splishsplosh.

Know nothing about cardiology,sorry.Can you ask your Gp??Write down any questions for when you go back for appointment.Or do they have a specialist nurse at the hospital who could maybe provide advice?You could ring the ward/department and ask to speak to them if you can.Most areas have a specialist nurse.

Avoid googling!!!

Saggarmakersbottomknocker · 19/04/2008 21:32

splishsplosh - I don't have any experience of it in adult - my dd had cardiomyopathy as a young child but is now much improved although still on meds.

Are you having cardiology care during during your pregnancy as it can put extra strain on your heart? Also one of the main drugs they give for DCM is unsuitable for use during pregnancy.

There is a discussion board at Cardiomyopathy Association. Hopefully someone with more experience will be along.

ThursdayNext · 19/04/2008 21:41

splishsplosh, have you just been seen at your local hospital? I think you should probably be seen at a specialist centre. The main centre in London for cardiomyopathy is at the Heart Hospital. It would probably be a good idea to ask your GP to refer you there. They may be able to give you a more definite diagnosis or at least some more information.
You may find the cardiomyopathy association helpful www.cardiomyopathy.org/

Original poster
splishsplosh · 20/04/2008 15:43

I'm not seen at my local hospital for this, but at St George's. They're seeing me again whilst pg, and are writing to my local hospital as well. Last time I was pg (when they hadn't told me what they thought might be the diagnosis) I saw the consultant obs, and also the aneasthetist, and was told there was no problem with anaesthetic if required.

I had an MRI a few years ago at the Royal Brompton, but it didn't show any scar or fatty tissue, just slight enlargement of the ventricle, and they can't do it again while I'm pg due to the stuff they would choose to inject during the scan.

I know googling is the most foolish thing to do!

OP posts:
Original poster
splishsplosh · 21/04/2008 21:08

Bumping 1 more time, before giving up

Thanks for the links, I've had a look, just not sure about posting there as I haven't got a diagnosis yet

OP posts:
sillytilly · 21/04/2008 21:16

Splish, hello, my dad has this, or a condition within the realms of one or two overlapping ones, but they think late-onset ARVC

he started with nausea and dizziness, eventually dr did EVG and rished him to hospital with HR of 240bpm

since then they have had to shock his heart twice to revert it back to normal and he has been pretty poorly at times. he's had three catheter ablations, which haven't helped him, and this year had an ICD fitted, to guard against Sudden Death

he's on betablockers, ACE inhibitors and something else. his echo and MRI showed significant fatty tissue

um, would second the website people have linked to, he's on it all the time

back in mo, just cooking xx

sillytilly · 21/04/2008 21:17

sorry, ECG, not EVG

he hasn't got a formal diagnosis either yet - he's been seen at the Heart Hospital in London and they have sent away genetic samples to Russia and the US as much research still being done into it

misdee · 21/04/2008 21:20

hi splishsploswh, i am heading to bed soon but didnt want to leave this unanswered.

my dh (Peter) had DCM from a result of a virus which attacked his heart. unfortunatly his health did get really bad, and we had some scary times. He spent over two years being supported on an artificial heart, and finally had a heart transplant in august 2007.

my MIL is on the CMA message boards with lots of lovely people as well.

what tests have they done?

usually a echocardiogram can be done to diagnosed.

our blog if you are up to reading it is at www.waitingforthecall.blogspot.com

noddyholder · 21/04/2008 21:26

Hi I have obstructive cardiomyopathy HOCM which is similar.I have ahd no surgery and am on medication to stabilise my heart but don't know what the future holds and many people live a full life and it never progresses and others like misdees dh deteriorate and need more help.It can worsen after pregnancy but tbh when I was pregnant i felt brilliant so who knows?Don't google it is too scary.

sallystrawberry · 21/04/2008 21:26

This reply has been deleted

Message withdrawn at poster's request.

misdee · 21/04/2008 21:29

as NH says a lot of people stay stable for years on medication and some even make a full recivery with medication. i know one man who had the pump who made a pretty good recovery and is now pump free and not on the tx list.

dont google, if you do feel the urge to look things up then do stick the CMA website as its the only one i know of that is actually full of up to date info including medications. ACE inhaibitors bought things massively forward regards treatments, and i know a lot of people had great/stable results on a drug called carvidalol. but it all depends on what one you have and suitability of meds to each individual.

Original poster
splishsplosh · 21/04/2008 21:38

Thanks everyone.
I've had ecgs, which are usually normal, they showed me one where there was a slight blip.

I've had an mri, which didn't show any scar tissue or fatty tissue, but did show that the right ventricle was slightly enlarged. That was back in 2003, and they can't repeat it while I'm pg due to the stuff they would inject during the scan

I've had holter tests, 1 of which showed ventricular tachycardia, but these days I don't get the palpitations very often, so it's hard to catch them

I've had 2 echocardiograms, which apparetly show my heart doesn't contract as much as it should do

I've had some medication in the past, but I'm not on anything at the moment. I get wheezy sometimes when allergic to things, so they haven't given me betablockers

The last appointment they went through all my tests, and the results, but the only advice was to avoid stress as adrenaline can sometimes trigger palpitations apparently, and to seek treatment if I suffered symptoms.

I've just had a 48hour 12 lead (or 10?) ecg, but didn't have any symptoms, so I doubt it'll show anything.

I guess I'm a bit worried that they made me feel like it was something serious, yet I'm not on any treatment.

OP posts:
noddyholder · 21/04/2008 21:45

It really is a wait and see scenario.If they thought you were in a risky situation they would do something.It is one of those things that it is better to know you have it.Any dizziness or blackouts should be reported immediately apart from that relaxation is key it really helps in so many ways.Alternative therapies if you are into that are great esp meditation and reiki which has been a lifesaver for me xx

sillytilly · 21/04/2008 21:50
noddyholder · 22/04/2008 09:16

hello

macwoozy · 22/04/2008 09:43

Hi splishsplosh. I have hypertrophic cardiomyopathy and have had a ICD fitted due to the V.T's and an unusual blood pressure response to exercise. Before then, I was on medication and had no choice but to take it throughout my pregnancy(amiodarone). Initially I didn't have any symptoms and I wasn't put on any medication, it was just a matter of yearly check ups, and like yourself told to avoid stress. I had no problems throughout my pregnancy.

I too was treated at St Georges(I'm now under the Heart Hospital in London). I had exceptional care during pregnancy and labour and was in the high dependency unit within the labour ward. Will you be having your baby at St Georges? I really felt that I was in the best hands there.

Original poster
splishsplosh · 22/04/2008 17:40

Hi Macwoozy
No, I'm due to have the baby at Mayday in Croydon. I now know that when I was pg before, they thought I had 1 of these conditions, but just hadn't told me! I was seen by obs consultant a few times, as well as the mw, and saw the anaesthetist to discuss if there would be any problem if I needed a GA, but that was about it.
I was initially put on flecainide (Sp?), which I was allergic to, then amiodarone for a short time after a bad run of VTs, then something else which didn't seem to make a difference, but nothing for the last few years. It seems a bit casual, the approach to it all, or maybe I'm just worrying too much now.

OP posts:
sillytilly · 22/04/2008 18:36

it certainly sounds lot more "casual" than my dad's treatment, Splishsplosh, but I think I am right in syaing not all VTs are dangerous, just the ones originating in the lower left ventricle (I THINK)

can you ask for a referral to the Heart Hospital in central London?

Original poster
splishsplosh · 22/04/2008 21:04

I suppose I could - but to be fair they seemed to be taking a lot of time and trouble over me this time, I was in consultation or having tests for 2 hours, spoken to by 1 dr, the consultant came in to introduce himself, arrythmia nurses chatting / staying late / offering to collect my equipment for me to save me a journey.. I felt almost like a private patient , and I suppose they're hampered by my pg and the fact that it's been hard to catch my symptoms etc.
They do seem worried by my vt, it doesn't happen very often these days, but a couple of months ago I had 20 minues of them, so fast I couldn't really count, but at least 200 in a minute, and felt unwell, but didn't pass out - that's obviously what they're most worried about.

I guess I just hope things ok go ok for now, and I'll have to think of questions to ask before my next appointment in June

OP posts:
macwoozy · 22/04/2008 21:58

Going on from what sillytilly has said, could you have possibly suffered from supra-ventricular tachycardia (SVT) rather than VT's? SVT's are not as serious. However, amiodarone is a potentially toxic drug, and is not given out without serious consideration, especially for younger people.

I'd ask for a referral to London Heart Hospital, they might well decide that you indeed don't need further treatment, but it'll give you peace of mind at least. This worrying must be stressing you out so much.

Original poster
splishsplosh · 22/04/2008 22:08

It was definitely VTs that they identified on the first holter I had, which is what made them refer me for the other tests, and they've since found the other problems on the mri and echo.

I think I'll hang on for my next appointment and see what happens then.

Any suggestions on things I should ask?

OP posts:
sillytilly · 22/04/2008 22:09

Macwoozy - it's Dinny here - we have spoken before about all this - are you pretty stable atm?

Swipe left for the next trending thread