Feel like I'm not being listened to... - British Heart Fou...

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Feel like I'm not being listened to...

BC4ever profile image
33 Replies

Hi,

I was diagnosed with a hiatus hernia fifteen years ago. I was put on Lansoprazole, altered my diet, raised the head of my bed etc (all the things I was advised to do). The hernia was brought under control and I've had no trouble with it for years.

Ten weeks ago I had a heart attack and five stents fitted. I'm 63. All the new medication seems to have made the hernia flare up and I'm in constant pain now (that can feel like a heart attack).

Spoke to my Cardiac Nurse, who said, 'it's probably the blood thinners (Clopidogrel) and the Asprin that's causing it, and there's nothing I can do about it'.

It was so bad I eventually got an appointment with my doctor, who said, 'he thought it was stomach related, rather than heart'. He changed my Lansoprazole to Pantaprozole so I could take a larger dosage, and said, 'that should calm it down. I cannot stop any of your heart medication'.

It's done no good whatsoever. That was two weeks ago.

Does anyone else experience stomach pain, indigestion, pain around the chest area, from taking Asprin or blood thinners or any of their heart meds?

I just feel like nobody (medical) is listening to me, and my worries are being brushed under the carpet. In particular, I feel like my doctor isn't listening to me. I'm in pain every day with it and beginning to worry that it may be something else that's causing it!

My anxiety is terrible (which isn't helping), as sometimes it feels like I'm about to have another heart attack. It's making me so worried and depressed.

I don't know what to do next...

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BC4ever
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33 Replies
Happyrosie profile image
Happyrosie

this is a hard one! I’ve not heard that Clop. would cause tummy troubles but aspirin certainly does and you can ask to be prescribed “enteric coated” aspirin . I gather this means that the aspirin doesn’t get digested by the stomach but goes a bit lower down before it gets to work.

Pantaprozole is, as I understand it, the right tummy drug when you are on Clop.

Your doctor’s group of surgeries should be employing one or more pharmacists and they might be able to help the doctor. Ask the receptionist at your surgery.

The heart medication might be able to be tweaked just slightly - like I’ve suggested for the aspirin - but I’ve no further thoughts. Maybe another forumite might have a suggestion.

meadfoot profile image
meadfoot

Meds have the capacity to upset our stomach in many cases and combinations. My stomach is in a constant state of upset due to various meds, heart and others. I too have a hiatus hernia plus acid reflux.

I am never sure what is best to take and have found medics, cardiac and gastric not helpful in finding a solution so I do the best I can with having a bland diet, small meals and in my case gaviscon advance, I seem to be able to just about cope most of the time with that strategy. But thats just me, you may need a very different approach. One thing I am sure of is I cannot tolerate PPIs of which lansoprazole is one of several ending in ‘ole’. I get no help from any of them and I have tried them all. In fact they have made things worse.

Just last week my gastro suggested I try them again, I said no thank you. Stress wont be helping which is not easy to contain I know but it does exacerbate the situation. I guess its trial and error until things settle down. I had an almighty flare up of gastric issues a couple of weeks back and was beside myself with pain and upset but it has since settled somewhat. Its all never very far away though. Ensure where possible you have emotional as well as physical support. Best wishes you arent alone.

Blackwolf_7619 profile image
Blackwolf_7619 in reply to meadfoot

I am sorry to hear about your recent health problems, and as a woman i have continuosly been a victim of medical gaslighting! However, I too have a hiatal hernia and they truly are one of the worst things, causing a variety of problems.

I have tried all the medications all the way tonthe strongest Ezomprozole to no avail. Honestly, the only thing that has worked for me is Peptic. It's not the best tasting but it does help sometimes.

Myrtledene profile image
Myrtledene

Try coated aspirin

Stuartc100 profile image
Stuartc100

When you say HH pain what/where exactly and im assuming its the same pain you had 15 years ago when they first found it? im surprised they havent at least sent you for another endoscopy as 15 years alot can change and with you having a HA it may have gotten larger (they never shrink they cant, they are rips in the chest cavity) the HH will be a sliding one the other sort is where your stomach doesnt slide back down and gets trapped in the chest cavity (super dangerous) i switched from PPI to h2 blockers as the PPI's we think caused SIBO id been on them like yourself for 15 years the h2 are just less effective, that might be an option, but 100% stress and anxiety will play a massive part in it and it could be triggering your vargus nerve, which can do all kinds of horrid things

Wilfy28 profile image
Wilfy28

I had a hh which caused lots of pain, eventually, a year ago, it was operated on and the difference is astounding. It would be worth getting yours checked as they do worsen over time, mine had been for the past 15 years. All the best

mesally profile image
mesally

Have you tried suplementing your ppi with gaviscon advance, a spoon before and after meals. Could be worth a try.

zoecat21 profile image
zoecat21

Omgoodness, yes I have an hiatus hernia, diagnosed 4 years ago. I had a cardiac arrest Easter weekend this year. I had Cpr and the rest. And my hiatus hernia has given me grief ever since. I'm not on blood thinners or anything. But what I will say is I had to see a GP again for about the 3rd time about this pain and she told me, people who have had to go into hospital with traumatic events usually present with stomach or bowel issues afterwards. Because your body diverts the blood to the more important organs, so this is common. But I'm sorry that you are suffering this as well (I thought it was my heart as well until I heard this). It's a day by day thing. I take bisodol antacids to help. The GP said its okay. I'm only only omeprazole and furosemide though .no blood thinners. I hope this helps.

Loobycare profile image
Loobycare in reply to zoecat21

Hi zoecat 21I am not sure if I understood properly, but are you not on any heart meds following a cardiac arrest?

zoecat21 profile image
zoecat21 in reply to Loobycare

Sorry, I do ramble a bit and forget some things to add to my reply. I have just recently gone onto bisopropol, but other than furosemide and omeprazole, no I'm not on any other medication. I did have an ICD fitted which is another story in itself. I don't know how your journey so far has been but I haven't been able to get answers for a few things. I do have my first check up in September.

Murderfan58 profile image
Murderfan58

I took Lansoprazole for acid reflux but had to come off it due to it reducing my sodium levels to much. My GP told me to have Gaviscon when I needed it. And that controls my reflux and doesn't interfere with any of my tablets. I find the liquid better and use the dual action one but always have the tablets with me just incase.

I found what foods or drink trigger the feeling of the reflux . Try not to drink coffee,be careful with alcohol,high acidic fruit and veg ,I found lettuce mixed leaves caused my reflux , cucumber,can't have bread products everyday as they can trigger it. I stick to porridge for breakfast as some cereals are over sweeten and the additives cause reflux . Can't have anything with corn in .

If you can write a food diary and see if some foods and drink cause it. I know it's a chore but it's better than the pain . For over 15 years been on a low potassium diet because had problems with my levels . But 2 things I can't give up are tomatoes and mushrooms so only have small amount of each everyday 6 weeks but always cooked as it reduces the potassium in them.

I am 66 on Flecainide and Apixaban for PAF born with small hole in the side of my heart and have rare hereditary neurological condition.. Which causes me various problems including my wind pipe go into spasm and I can choke on my own salvia let alone food.

Plus can't have anything crunchy as it gives my blood blisters in my mouth so any biscuits have to be dunked . Great hardship 🤣🤣. .

No idea if this has been of any help.

wischo profile image
wischo in reply to Murderfan58

Gaviscon is generally a safe medicine but avoid taking it at the same time as aspirin as it prevents the aspirin from working properly. I read somewhere to leave a 2 hour gap between the two though if in doubt ask your Pharmacist or GP.

Murderfan58 profile image
Murderfan58 in reply to wischo

I don't take aspirin but I have to leave it 2 hours after I have taken a tablet for my neurologist condition before I can have Gaviscon.

wischo profile image
wischo in reply to Murderfan58

Yes I am glad you know as a lot of people dont. Aspirin is Acetylsalicyclic acid and Gaviscon is an antacid and can neutralise it.

pistachio_lover profile image
pistachio_lover

you might ask for enteric aspirin. I would also consult with a pharmacist as medication is their sspecialty and they might be able to suggest how to tweak your meds like what time of day you should take them. It could be that you are taking them at the same time when it would be better for your digestive system to take them hours apart. I also would push the gp for a referral for an endoscopy so you can see if there is any change to the hh. Don't stop advocating for yourself. They may get frustrated with you but they don't have to live in your body and if you continue to push they will eventually give in and get you the referrals you need to get you off their back. Good luck and hang in there.

Shabana1974 profile image
Shabana1974

My mum had one but due to her chronic heart Failure they could not operate but gave her really strong pain relief to help with the pain

Seal59 profile image
Seal59

Hi, this was very interesting to read after the last 2 days we’ve had. My husband is 67, had a quintuple bypass 6 years ago and on the usual heart medications. 2 years ago he developed an epigastric hernia which doesn’t give him too much trouble. He takes a fair amount of Gaviscon tablets though! Tuesday evening he had chest pains, took some Gaviscon but that did nothing. Then we decided we probably should go up the hospital in case it was another heart attack. After 9 hours in A&E and another 4 hours the next day and many tests later they gave his heart a clean bill of health and said they think it’s acid reflux and to double his Omeprazole to 40mg. If still a problem more tests(digestive related) may need to be done. I feel our doctor is reluctant to change medication, but if the hospital writes to him then obviously he does it. My husband has tried to talk to the G.P. about this issue previously but it always seemed to be dismissed as minor. I totally understand your anxiety as I live on my nerves watching my husband wondering if this is the next heart attack. I feel easier about his heart but the issue still remains. (The pains came back last night).

Sorry about the long reply . My only advice is keep persisting with the doctor, (which I know is probably futile) or if you can pay for an initial consultation privately maybe do that. Or go to A&E when you get really bad pains, and mention the hernia and perhaps you will get some more helpful answers. Please let me know how you get on.

If you are in pain which you believe in part is caused by a long term flare up caused by your HH and your PPIs are not bringing it back under control I suggest you go back to your GP and get him/her to refer you to a consultant gastroenterologist with a view to you having an endoscopy to find out how serious it is, and whether a surgical intervention is necessary. If you can afford it and are really concerned about your well being I suggest you go the private medicine route, and if you do that you might even be able to bypass your GP as a self referral. A consultation will be about £250 and your local private hospital should be able to advise on the apprimate cost of an endoscopy. I have suffered from reflux disease for many years but for more than 15 years or so have managed to get it under control with PPIs, diet and posture management. I do have occasional flare ups but go back to diet basics which usually takes a few days to restore normality. I assume you know which foods you should avoid, gas producing like onions, acidic like citrus, relaxants like coffee, and spicy foods, so maybe have another look at your diet to see if you can cut out something that might help. But I would avoid regular alginate loaded antacids like Gaviscon since they are loaded with sodium. Finally one thing you could try unrelated to the above if you are taking dispersible aspirin, is to try low dose coated aspirin which is available over the counter. That's what I take given my history of gastro issues. I hope you get sorted..

MumaLines profile image
MumaLines

I feel your discomfort and your pain. You are not imagining the pain and if the hospital has confirmed your heart is ok, then the culprit is Clopidogrel aggregating your stomach lining which in turn is flaring your hiatus hernia.

I have had an hiatus hernia for 30yrs + and know the chest pain and discomfort you are describing and feeling. I thought I was having a heart attack most weeks and was so scared.

Lansoprazole gain me a new lease of life and worked wonders and stopped the chest pain, and discomfort pains and acid away.

I then suffered a heart attack and had an emergency Quadruple Bypass.

I then had the usual heart meds including Clopidogrel (no Aspirin as allergic to it) and the other heart meds.

The Clopidogrel seriously flared my hiatus hernia. I had chest pain so thought I was having another heart attack but A&E ran my bloods and the heart was fine.

My fabulous pharmacist told me Clopidogrel irritates the stomach lining the same as Aspirin so you are getting double irritation to your gut.

He said people with hiatus hernias do suffer from Clopidogrel but we have to have it. They put my dosage of Lansoprazole up to 30mg to control it.

I had noticed other things like lime juice were giving me serious heart burn and acid in the throat. I’d never had any problems with lime in the 30 years of knowing I had a hiatus.

My gut seems to of changed since my bypass and I now follow my pharmacists advice and take 15mg Lansoprazole and I up the dosage when I need to as 30mg causes me an upset stomach 🤦‍♀️

Bless you as your constant worry about your chest pain might be making it worse and I wish I had a magic wand for you xx

Go and make best friends with your local pharmacist as he/she might have some different advice that could help you x

Qualipop profile image
Qualipop

Soluble Aspirin gave me horrific stomach p ain. I got it changed to the enteric coated variety that doesn't dissolve until it reached yoru intestines. It's far better but some doctors say it doesn't work quickly enough. I also take famotidine rather that the "azoles". The azoles make me feel permanently sick. Famotidine works in a different way and if I do get pain, the dose can be doubled short term. Your gP certainly can change your medication but he needs to ask the cardiologist for advice.

Silvertail profile image
Silvertail

I have severe reflux and a hiatus hernia, and am on the usual heart meds, a statin, 100 mg aspirin per day. Nothing helped me much until I was put on a large dose of Nexium - 40 mg - (Esomeprazole) and took it as instructed - half an hour before breakfast.

Thanksnhs profile image
Thanksnhs

Hi I had terrible trouble with heartburn and reflux and my cardiologist prescribed famotidine as well as lanzoprazol, the burning stopped immediately, for me it was a wonder drug. I hope you can get something to help you soon it's a horrible thing. Take care char

Cavalierrubie profile image
Cavalierrubie

l have a hiatus hernia. Any stress or anxiety causes a flare up, as do anticoagulant drugs. I take Warfarin. I take Omeprazole 20mg and l can up the dose as needed. Recently l had to go to AE as the pain mimics heart attack, as you say, and l have AF in the picture as well. I have eventually been given Famotidine which is an H2blocker. I take this at night, together with my normal dose of Omeprazole during the day. I think you need a review of your medication for something stronger or be referred to a Gastroenterologist. Go to your GP who should help you with this.

Mac-beats profile image
Mac-beats

Hi

I can relate to your situation and stomach problems as I’ve had chronic issues with reflux and acid since HA in 2015, mainly induced by the meds. Currently on Clopidogrel.

Tried all the’zoles’ but made me feel worse so switched to Famotidine. Other main 2 things I did for relief (GPs not much use) was to go plant based and buy the Iqoro device. Although things are not perfect and I still have the odd flare up, there’s been a huge improvement in my symptoms, and I believe the Iqoro device has really helped. It is endorsed by the NHS and available on prescription in some areas.

One good tip I saw recently from a very experienced nutritionist was to eat, if possible,a handful of leafy greens before a meal. This helps to start the digestive process and settle the stomach. Got to be a good thing.

Wishing you all the best, things can get better.

BC4ever profile image
BC4ever in reply to Mac-beats

Mac-beats. What is a Iquro device please?

Mac-beats profile image
Mac-beats in reply to BC4ever

Hi BC,

It’s a neuromuscular device that strengthens the muscles of the diaphragm \digestive tract and can help with HH, reflux etc.

Made by a company in Sweden. Just google ‘Iqoro’ and you’ll get loads of info. If you’re in UK you could ask your GP about it as it’s approved by the NHS. Best wishes.

Bunkular profile image
Bunkular

I wonder if your doc could rule out stomach ulcer for you. I had one years ago and Pantoloc helped get rid of the severe pain. It's a stomach acid reducer and it allowed my ulcer to heal. You could do an experiment with your doc's approval and take antacid tablets to see if that helps. If the pain goes away after a few hours of taking something like Tums or milk of magnesia then it could be that aspirin is causing you pain. If that's the case you need to take coated aspirin (enteric coated ASA, slow release)

gbn_ profile image
gbn_

Always take your aspirin with food, never alone. I was put on Xarelto along with an 81 mg. baby aspirin, I had severe bleeding underneath the skin around the trunk area from a bad coughing spell. Very painful.

Haggishead profile image
Haggishead

I cannot tolerate any of the PPIs , so now i have been using Peptac which eases the pain, I also take Famiitidin? In tablet form if I get a sudden excess of acid reflux when out shopping etc Ihave Peptac last thing at night. Ivehad Hiatus Hernia and Acid Reflux for many years and this is the best combination i havefound for relief.

KirWil profile image
KirWil

Hello my partner is in exactly the same boat. He is in constant pain and been fobbed off too. It sets his atrial fibrillation off. He can't leave the house. We are waiting for a barium meal to check.I would push and try to ask to see a specialist for the stomach. Good luck

Jedi14 profile image
Jedi14

Just a one thing here:My aspirin was automatically stopped when I was put onto Clopidogril!

Supergranny123 profile image
Supergranny123

Hi yes I have AF and a hiatus hernia medication bisoprolol edoxaban (blood thinner) and lansoprazole and I have pain in chest plus a pain on left like I have been kicked in stomach I stopped the lansoprazole as were doing no good but was told I have to take it to prevent a stomach bleeding cos of blood thinners so it's a constant never ending circle .Hopefully you can try to push it to back of mind and try to get through day by day and feel better soon

TheJazzSinger profile image
TheJazzSinger

Try a good probiotic and good natural Greek yoghurt and kefir, all of which have bacteria which helps enormously with acid reflux. Mine is a liquid one - a measure before breakfast is all but you have to take it every day for 12 weeks to help your gut. Not sure if you can advertise products on here, so I haven't named it. Aspirin may thin the blood but it can cause serious stomach problems and lead to haemorraghes. I had read somewhere that they were stopping prescribing it because of that.

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