Cardiomyopathy

[AmFabulous]

I am diagonised of cardiomyopathy please does any one has a better medication for it,am just tired and like commiting suicide.

[Rosie78]

Hi Am,

I cannot give any opinion on medicines but I can suggest that any type of reaching out for support is good.

When we are unwell in any serious way it can lead to feelings of hopelessness in the situation.

I suggest you speak to the BHF helpline for emotional support and maybe some practical suggestions.

Also try and be around supportive kind family or friends

If your illness is isolating I also suggest ringing the samaritans if you are in the uk it is confidential and they don't give advice but provide a safe listening space. ( i have used that service myself about 5 or 6 times during my life) and it is surprising how it helps.

Hopefully someone with the condition will be along to offer practical suggestions,

Remember your feelings are valid and quite normal to feel as you do as you are struggling with a physical disease so the first step with the condition is to get as comfortable as is realistically possible and manage the condition so maybe making a GP appointment to say that you are struggling with managing the symptoms and that you feel a bit left in limbo. Which is affecting your mental wellbeing.

Take Care

[AmFabulous in reply to Rosie78]

Thanks very much for your advice,I base in Germany but am from africa,I do not know about BHF can you explain to me better about them, and dont they have a branch in Germany?

[annettahope in reply to AmFabulous]

Hello I was diagnosed with hypertrophic cardiomyopathy two years ago, and I know what you are going through I'm from Nigeria I live in London I'm sorry but for me that time no medication is Woking for me, but dis year march I went for heart surgery. I don't know how severe urs is but I hope you find the help that you need on time. Good luck.

[AmFabulous in reply to annettahope]

Am so sorry about yours hope u are better now?mine is worst than hell,my chest burn like flames of fire and it affects my head, medication is not working,can't even speak well anymore,so tell me about ur surgery were u given new heart,and how was the cost?

[annettahope in reply to annettahope]

Hi my symptoms started in 2014 it was after so many test dat I was diagnosed mine was ubstrution I'm always tired, dizziness, fatigue I can't walk for 2mins I will have to sit down then I feel like I'm going to collapse and die, I was not given a new heart the procedure I had done is called septal myactomy and mitral valve repair, dats why I said I don't know the type of cardiomyopathy you have bcos there different types of it.

[Hidden in reply to AmFabulous]

British Heart Foundation (BHF)

[Prada47]

Hi AmFabulous just to start that is at least 2 of us !!

So what medication are you on and for why ? my understanding of Cardiomyopathy is it can present in different ways ! We all get down days and they are bloody awful so try to persevere and you will get through it. I think a little more information may lead you to a good way forward. I have Heart Failure and take Entresto others take Candesartan or Ramipril along with the always present Beta Blockers .

Look forward to hearing back from yourself

Regards

[AmFabulous in reply to Prada47]

😥😥thanks very much,I never knew I had this problem not until 2017 and since 2010 have been having bad signs like lost of weight and even sometimes memory loss,depression but all the doctors I met in nigeria only told me is malaria and they gave me medication but it rather get worst,so 2017 when I had opportunity to come to germany that was when I was told to do a heart check up and I was diagonised of non compaction cardiomyopathy,but the doctor gave me bisoprolol 5mg and ramipril 2,5mg,but each time I take anything tablet I later develop strong headaches and chest tightness.

[Hidden in reply to AmFabulous]

The depression is caused by the bisoprolol. 5mg is too high.

[Lucy61 in reply to Prada47]

If you tell me what meds your own I can compare them with mine I have a devilberator pacemaker

[Rosie78]

HI Am,

the BHF is abbreviation for the British Heart Foundation ( my apologies For not writing it in full so you would know I meant this website)

I am sure there will be a national website in Germany for the heart if you have a google or some other helpful websites.

The good thing is now they understand it is not malaria but a heart condition .

You can still message The British Heart Foundation with any questions how to do that is on the main website.

[AmFabulous in reply to Rosie78]

Thank you very much rosie am very grateful,do you have their email address,I want to email them directly.

[Surreychica_1 in reply to AmFabulous]

Telephone number : 0300 330 3311. If you go to this page bhf.org.uk/ you can sent a message they do not appear to have an email address. Best of luck. I have spoken to them on numerous occasions from Spain and they have been most helpful.

[AmFabulous in reply to Surreychica_1]

Ok thanks what's the country code phone number because they dont reply via email

[Surreychica_1 in reply to AmFabulous]

00 44 and you miss off the first 0 so you dial 11 44 300 330 3311. A voice will ask you what department you want and you need to press the number on your phone. You want the one for advice and help from a nurse.

[clarehealsworldwide in reply to Surreychica_1]

Dial 00 44 390 330 3311

[Surreychica_1 in reply to Rosie78]

Just to say that I live in Spain and I ring the Heart foundation in the UK and speak to a nurse so I am sure that Amfabulous can do the same. They have been most helpful.

[Shar28]

Hello, I’m sorry to hear you have cardiomyopathy and the way you’re feeling. It’s an awful shock when you first find out and completely normal to have all sorts of feelings about it and want some support. Have you discovered the Cardiomyopathy UK website? If not, here’s the link

cardiomyopathy.org

They have loads of really useful information about cardiomyopathy which you may find useful. They explain the different types and treatments, which you may find helpful to discuss with your doctors. They have a nurse-run helpline which is fantastic, although I appreciate you are in Germany and it me be expensive to call them.

Perhaps you can ask your doctors if they know of a similar organisation in Germany so you can get support locally, or at least fairly locally.

Best wishes.

[AmFabulous in reply to Shar28]

Thank you very much,I have gone through their website and I just email them but am waiting for their reply,anyway have you had anyone with such illness before?

[Rosie78]

The main website address is

bhf.org.uk

if you go on the main page in small writing at the top of the page is a section called What we do.

If you click on it you can then scroll to the bottom of the page where there is a section for sending an email and also their helpline number for medical questions which is 0300 330 331( presumably if you can ring it outside of the uk there is a charge for that)

so probably best to send an email to ask, and if there is a cost they may be able to suggest a more appropriate number/ website in Germany.

Finally at the bottom of the page is links to facebook, twitter etc which also has the number and email.

[AmFabulous in reply to Rosie78]

Thank you very much rosie ,I just email them now through the link and am waiting for a reply,am so grateful 😥😥😥😥😥😥😥

[Rosie78 in reply to AmFabulous]

Oh thats great.

I notice you say your age which is very young for Heart problem.

There are other younger adults like you on the forum so you are not alone.

Take care take one day at a time

[AmFabulous in reply to Rosie78]

Thank you rosie😥😥😥😥😥

[Rosie78]

oh if you press on my link it will redirect you to the page you need

[mauschen]

Hi,

Can you speak German, if you can download this app as you will find everything to do with heart disease and how to get local support

herzstiftung.de/herznotfall...

Whereabouts in Germany are you and what is your native language?

[AmFabulous in reply to mauschen]

I speak little bit German but English is my second language,am from africa came to Germany 2017 I live in karlsruh baden württemberg,am 27years old,thanks for the link I will do the research

[shekhar63]

There is way to live with cardiomyopathy. I am having this problem from the age of 38 ant till today at 63 I am doing fine

I had gone for pace maker in 2004.

The way of leaving with cardiomyopathy is slow and silent life. Don't make hurry or exert your self. The work others do in one step, we have to do it in 3_4 steps. So don't bother and have a courage to face it

[AmFabulous in reply to shekhar63]

Thank you very much😥😥😥😥😥😥😥

[AmFabulous in reply to shekhar63]

Hello please how much does it cost to undergo pace maker surgery thanks.

[clarehealsworldwide]

Hallo, I also have Hypertrophic Cardiomyopathy. Wish you feel better soon. Its a shock when you're first diagnosed. I was told mine was inherited, though neither parent ever mentioned it to me. The UK organisation cardiomyopathyuk.org is very helpful. Their phone number is on their website. They have online support groups. Best of luck.

[Hidden]

Bisoprolol is making you feel this way. 5mg is too high.

[AmFabulous in reply to Hidden]

But the doctor prescribe it for me,anyway how many mg do you suggest I take?

[Hidden in reply to AmFabulous]

I cannot suggest as I am not your doctor. Tell your doctor how it makes you feel and if you could reduce to 2.5mg. If that doesn’t work 1.25mg.

Any beta blocker is better than nothing. When I was on 5mg I couldn’t get out of bed.

[Lucy61 in reply to Hidden]

Mines is 1.25mg but sometimes they raise it but not for to long

[Crochetbaby]

Hi I’m 52 and was diagnosed with hypertrophic cardiomyopathy when I was 21. At the time it was a massive shock. I was pregnant with my second child. But with careful monitoring and doing everything in moderation I’ve managed to do ok. I have a internal defibrelator fitted and it’s shocked me once.

Yes I also get chest pain but have learnt to manage everything. Your body tells you when to rest and when go steady. I’ve try.to keep active mainly by walking getting outside and taking g a deep breath and looking around you will always make you feel better. Observe the trees look at the houses lift your head up and try and enjoy what’s around you.

I’ve had lots of times of why me but you only get one life and how ever that life is given to you try and make the best of it. I’ve had to drastically change my life recently through not being so well but slowly I’m finding different things to do. You will find a way throu things. My daughter always says pull your pants up mum and let’s get going we can do this!!!!!

Sometimes I think no I can’t do it but mostly I manage to find a bit of spirit and off I go again.

You will too I promise you. Sometimes it just takes time. Tablets are always a nightmare I think they are all useless but I’m sure they are saving my life.

Keep going one day you will look back and be so proud of how you got through your dark times

Lots of love xxx

[Lucy61 in reply to Crochetbaby]

I have the same pacemaker and your correct when I first had it i was terrified to point off getting depressed thinking I am going to die in my sleep ect I am pacemaker dependent ive had a few shocks not had one for a while though because I pace 24 hours a day my battery runs low quickly I am due new battery very soon there waiting until after pandemic but I actually lead a normal life I often forget I have a pacemaker a lot I am and I think always will be very sensitive to any pressure or knocks near the device ive actually been very lucky I have a fantastic cardiac team ive known for many years what I am finding now though is I am getting out off breath suddenly thats a bit off a worry medical team are aware but I dont wish to put pressure on NHS at this terrible time I hope and pray its not a bad sign do you get fantom shocks??,, I jerk out my sleep sometimes I think its a shock others I am not so sure the heart is so complicated

[Amikatari]

Hi AmFabulous, here is a link for the German Heart Foundation, there is a tab at the bottom of the page so you can read it in English if that's easier. I'm sure the British Heart Foundation can give you support too, but perhaps the German one could arrange more local support and be cheaper to phone.

herzstiftung.de/

[Prada47]

Hello

Why are you going through a UK web site when you are in Germany ?? The German Health System is Excellent and I am sure they can answer any questions that you may have !!

I would suggest that you take a friend who speaks German and follow the well established routes available !!

Regards

[mauschen in reply to Prada47]

„ The German Health System is Excellent“

Is this generalisation from personal experience? If so, my experience is completely different.

Moreover, when someone doesn’t speak German, it can be very difficult for them. Even when one does speak German, medical terminology is another specialised level of the German language that can be alien to German nationals.

[Lucy61]

Hi 👋 there i have the same if you would like to message me I will explain better

[AmFabulous]

Email me please [e-mail]