Heart attack, 6 month on: So today is... - British Heart Fou...

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Heart attack, 6 month on

MattG1875 profile image
23 Replies

So today is the 6 month anniversary of my heart attack, would like to share my journey so far.Friday 28th heart attack at 5 side footy, A&E, cardio ward, angio, CABG. Pretty standard stuff. I consider myself to have been very lucky. Had great care, recovery good, no heart damage, normal heart rate and blood pressure. No cardio issue, I seem to be fixed.

The cocktail of meds. Firstly I vertually never took any meds pre op, no aspirin, paracetamol etc I had a bit of "don't need them" attitude, again I consider my self lucky. Anyway had to accept, the bisoprolol, clopidogrel, atorvastatin aspirin and later ramipril, having a understanding of what they do but not confident I really need them...all, considering my last cholesterol was 2.6 and heart function was normal. So this is were I am struggling, 1 month after my CABG, started the mouth ulcers, Doc refers me to pharmacist, who can't see a meds connection, prescribed some mouth wash etc. Ulcers continue, 3 months on a new Doc instigate tests after I have a 7 mouth ulcer episode and again Doc can't see any meds connection, test come back clear, next Doc phones me and tells me they will write to my Cardiologist to request alternative beta blocker, so now been on Nebivolol for 3 days (falling a sleep at 15.30 but guess I need to adjust). I now find stuff on the internet linking Atorvastatin with mouth ulcers in 2% of patients e. Why does the Doc not know this?

I have now been suffering for 4 month continously and have 5 mouth ulcers, struggling to eat and talk. I end up seeing (telephone call) a different Doc's everytime, they are inconsistant and I am now close to just stopping some of my meds.

Apologies I know my suffering is minor in comparison to some of the things you guys are going through. ❤️

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23 Replies
BeKind28- profile image
BeKind28-

Hello :-)

No ones suffering is minor when they are feeling the pain and having to deal with it

I always say we do really empathize with others but at the same time we can only feel our own suffering and I am sorry to hear you are suffering with these mouth ulcers that are painful I can imagine and making your mood feel low especially after everything went as well as it could be after your heart attack

I find it frustrating when you speak to one Doctor then you get another that seems to have a different view but as we know getting to speak to a Doctor for some feels like a miracle getting the same one when you need to is becoming like winning the lottery !!!

Having said that I know you are suffering I am having problems and suffering to at the moment and I get days where I feel all these meds which we need you get side effects then they throw another one at you and it solves the side effects you were having bit causes different ones and I have said so many times I feel like just throwing the lot away !

But deep down I know that would be dangerous to do so we should never stop medications without getting their expert advice no matter how frustrating it feels and as if sometimes you are hitting your head against a brick wall so please don't stop any keep pushing like I am who I class myself as a weak person and I know you must be stronger so keep going and take your meds until they resolve this issue and have faith eventually they will even though I know that does not help you when you are feeling as bad as you are but you do not want anything else happening by taking this into your own hands and causing possibly more harm

Take your meds I would say and keep pushing and hopefully you will get this under control :-)

Let us know how you get on :-) x

Carriefarm profile image
Carriefarm

I have found you have to do your own research. Doctors sadly do not know everything and don’t have time/bother to research your problems. When I had terrible pains in my neck when starting to walk ( I literally couldn’t walk without this pain starting in my neck) my doctor sent me away, saying that he couldn’t find anything wrong. After researching I found it could be connected to heart. Went back to doctor who then referred me to cardio. Turned out I had a >95% blockage of LAD. I research all meds and this forum helps understand that we are all different and react differently to illness and meds. I think you should go back to your doctor and inform him of the side effects listed for statin and perhaps discuss trying another one. Again, I would suggest research all meds. Best wishes.

MattG1875 profile image
MattG1875 in reply to Carriefarm

Hi and thanks for you response, I have become so frustrated this week with the pain and lack of progress that I've decided to stop statins for now and will tell the Doc. Let's see what they say. based on my last cholesterol and low sat fat diet the risk should be low. Thanks again.

Survivor1952 profile image
Survivor1952 in reply to MattG1875

You MUST talk to your doctor about stopping any medication, a sudden stop can be dangerous.

Freedomfan profile image
Freedomfan in reply to MattG1875

Just remember. The unsaturated cooking oils are not healthy. They are inflammatory. Too many omega 6 to omega 3 ratio. Only use cold pressed fats. These are the least processed.

And do things like using Avocado instead of mayonnaise etc.

The closer your food is to natural is healthiest.

Changing your eating lifestyle can keep you off of alot of meds. Its a lifestyle....but well worth it in how much better you will feel. Exercise of some sort is key as well.

Check out Dr Berg on YouTube for info on "diet" and how it affects your health.

Very informative.

MummaSoap profile image
MummaSoap

Hi MattG1875

Firstly, I’m so sorry to hear what you’re going through, it sounds very painful and uncomfortable! Secondly, you don’t need to apologise for sharing your situation - everyone’s experiences are relative to them and we are all here with the same worth and deserving of venting and support.

I have no experience of atorvastatin but with regards to the GP not knowing; it’s common because they are GPs and not specialists so they’re unable to remember the side effects for every drug that they prescribe. I apologise that this isn’t much comfort to you but I would suggest that you have a look on the yellow card reporting site and take a photo of it and share with your GP.

Please consult a medical professional before making any changes to your medication but also (as I’m sure you already have) make it clear how much your symptoms are affecting you.

Thinking of you and hope that you can get the right support to put a stop to the ulcers 🤞🏼🤞🏼

Best wishes

Soap 🧼

MattG1875 profile image
MattG1875 in reply to MummaSoap

Thank you for you kind words Soap. I understand the limitations of a GP and am now realising I need to take more control. It quite a transition after the CABG care I received. Thx

MummaSoap profile image
MummaSoap in reply to MattG1875

I empathise with how you’re feeling and it is a big shock when you’re “abandoned” back in to the community.

I just wanted you to know that you’re not alone and we will try to support you on your journey too 🙂

Personally, I try to view it that I am my best advocate and this is an opportunity for me to show my body the love it deserves so that I can share that love and kindness to my children and others - we’ve got this 💪

Good luck!

EU95PTM profile image
EU95PTM

I get it. I went through a period last year where I had the most terrible, painful and large mouth ulcers when previously I had never really had them badly. They were relentless for weeks on end and it was so bad there were days I couldn’t eat or brush my teeth. I consulted my GP who prescribed a numbing spray and sent me away saying it was most likely stress. The only thing that helped them ease was Corsodyl mouthwash. Eventually they went away and I’ve not had an episode like it since. I do hope you can get some relief.

MattG1875 profile image
MattG1875 in reply to EU95PTM

Sorry to hear you suffered, sounds similar to me. Your the first person who I have heard from that has had a similar experience. Can I ask how long you suffered with mouth Ulcers? I reckon I have had them for 5 months now, every day and quantity has increased, currently I have 5 and they are massive.Secondly were you on any of the meds that Iam on?

Thx for your response, sounds like Iam not alone with this experience.

EU95PTM profile image
EU95PTM in reply to MattG1875

No problem. I think I had them for around 3 months in total. If I get one now, they aren’t nearly as large or as painful as the ones I was getting. I’m on lanzoprazole, aspirin, bisoprolol, dapagliflozin, spironolactone, Atorvastatin, ramipril, Ezetimibe and amitriptyline. I was also taking warfarin and clopidogrel too at the time but no longer on those now as not needed. Doc said it was stress but I don’t remember feeling particularly stressed at the time (apart from the pain of the ulcers). I hope yours settle down soon.

MattG1875 profile image
MattG1875

Similar meds. Stress is likely a contributing factor, Iam not someone who is or ever has been anxious or stressed but having been through a CABG this must have an effect on you physical and mental state and hence be a factor. Thanks again for the response, it help me👍

Chuckles10 profile image
Chuckles10

Hi Matt

Most of my meds have been taken for many years and the side effects don't compare to the problems and pains i get if i don't take them so keep in contact with your GP regularly they should help you

MattG1875 profile image
MattG1875

I totally understand your position. The problem I have is that I feel like one or more of my meds have me in a low place right now and we need to balance pros and cons. I won't change without consulting a, GP. Thx

Hi Matt

I had a stent fitted ten years a go on front of the hart and before the hart attack I was all ways ran down struggled some days with work but never got diagnosed with it as was born with it and didn't show up on any scans till I had the hart attack , when I came out they said I will have to have exercises and be wired up at clinic to check hart was ok , but I never went as I was disappointed it was not sorted before the attack and doctors told me I had stay on meds I had seven weeks rest then back too work and early this year I got hearing loss in left ear and dizzy loss balance , really bad headaches doctor didn't do nothing to help was getting concussed with it after six months so I wrote a letter to him saying that I was coming off all meds gave them up for week and made improved recovered / Doctor has now put me on 1.5 Bisoprolol instead 2.5 as he admitted it was the side affects , but I am still on aspirin all so taken myself off the statins as it can damage memory , had yearly check up all ok saying this I do now take a vitamin B12 and vitamin D every day to help with the deuteriation of hearing in ear and nerve damage and the hart is fine with no chest pain over ten years after hart attack

But didn't have mouth problems as you have and no one knows your body better than you as the doctors go by what they are told on what you should take and don't look at long term damage not every one is built same my doctor didn't want to know about what I was going through and I am reluctant now about taking any meds

Nesting profile image
Nesting

I’m on clopidogrel , atorvastatin and lansoprazole for a number of years now

Have aches and pains but got used to them now , I take multivitamins and vitamin b complex and it seems to help a wee bit

Was diagnosed with aps syndrome after silent stroke so am on this medication full time

But always check with doctor before stopping medication or using multivitamins

Good luck

MattG1875 profile image
MattG1875

Hi, sounds like you've had a tough journey and learnt lots along the way. I m early days but learning fast. Funny thing is I was on 2.5mg bisoprolol, after couple of month I was unhappy with tiredness and cold hands and fingers, after a discussion with a cardio nurse she told me to listen to my body. So I reduced my bisoprolol to 1.25mg (her suggestion) , monitored for a week, felt I was coping better, told the GP, they just accepted it. Iam taking 80mg of Atorvastatin and feel this could be the root cause of my problems. When I reduced my beta blockers some months ago I spoke to the pharmacist (GP referral), I asked if I could reduce the 80mg dose based on my 2.6 cholesterol result but he said no more changes at the time. Well now the right time for me.Thx for you response.

Warm-heart profile image
Warm-heart

As someone myself who had side effects to my drugs that the doctors said could not be, I really understand your pain. Bisoprolol gave me complete insomnia, terrible ear congestion and pain, abdomenal pain & more, even a tiny dose. I have AF, and it has been my decision that my cardiologist now understands, not to take it. I prefer quality of life to a miserable rest of my life. Ultimately it is your body, you know your body, and you have the power to decide. I now sleep, don't have constant ear pain and congestion, and my quality of life is so much better. Mouth ulcers are absolutely horrific nightmare to endure, I know because I have had them too. I really feel for you and I am sure you'll find a way out of this to a better quality of life for yourself too. My husband had a heart attack at a football match, and stents put in, 15 years ago and his life has never been better. But I just saw you had no operation, despite that you have a lot of drugs to bear, more than my husband! By the way, I adopted the Pioppi diet by a cardiology consultant & I feel really well on this: amazon.co.uk/Pioppi-Diet-21... . Please keep us posted on your progress? Very best wishes to you & for you.

trafar profile image
trafar

I have had those particular side effects but had others which I have dine my own research on. I would say if you stop them do it gradually but be careful as I have done quite a lot of learning about cholesterol and now realise that my high levels were not necessarily caused by the food that I ate.

MattG1875 profile image
MattG1875

Hi tratar, my pre heart attack cholesterol was 4.8 with a healthy diet and post via low sat fat diet and atorvastatin was 2.6, so initially in the normal range. Do you feel anything one thing solved your ulcer issue?

Qualipop profile image
Qualipop

I'd ask a pharmacist about side effects of tablets rather than a G P. GPs can't possibly know what every drug can do.

Semley profile image
Semley

I do sympathise although I have never had this problem myself. Quite often it is the pharmacist who is best at knowing the side-effects of medications so ask him/her about the atorvastatin link. Like beta-blockers there is a large family of statin meds and another variety might work better if that is the cause of the ulcers. Have you researched the causes of mouth ulcers as the medics think that the meds are not the cause of them. Obviously the medics are trying to prevent another heart attack and, as I discovered, having one puts you at greater risk of another statistically. So good luck and play safe.

MattG1875 profile image
MattG1875 in reply to Semley

Hi Semley, thanks for your response. I have done my research on Ulcers, there's lots of connection to meds, lots of remedies. Very hard to pinpoint the exact cause. I will talk to the pharmacist. Thx

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