I had a heart attack 4 weeks ago and had a stent fitted. Prior to this I wasn't on any meds, but was immediately placed on 6 different meds.
I have a history of reacting badly to most meds. Typical symptoms are nerve pain in hands and feet, swollen abdomen, sensation of swelling across forehead, and an ear feeling blocked. The nerve pain in my hands can reach intolerable levels.
Nothing bad happened for 2 weeks, then the onset of pain started over a few days and became really bad, so I ceased all meds except aspirin and clopidogrel.
The situation improved, but a few weeks later I felt things getting worse. Nerve pain in hands and feet, muscular pain in feet, sensation of forehead swelling, mouth feels tight, hearing impaired in one ear. I feel somewhat worse as each day passes.
I know stopping the anti-platelet meds is dangerous, but I'm reaching that point where I feel that may be the best choice, come what may. As an aside, I have an acute phobia of using the telephone, so am finding the lockdown and inability to see my GP very challenging.
You must contact your GP. Can you not have someone with you to make the call and speak on speakerphone. You need meds after a HA and stent. They can change type until the get the correct ones to suit you.
I had problems with every single one of my tablets and they were all changed. No problems now. I'm like you with side effects. It's usually a preservative causing it rather than the actual main ingredient
Get someone to phone the GP for you and insist that you are seen in person
Maybe you could send one of the BHF Admin team a message and see if you could chat online with a BHF Nurse, don't know if that is possible, but worth a try.
As already said, you need to be on meds and shouldn't stop or alter dose without consulting a Dr or other healthcare professional.
I hope you are able to get the help you need soon.
Thanks for the replies. I'm going to stop all medication tomorrow. I understand what that may mean, and I'm ready.
You do realise that some meds should NOT be just stopped, you don't say what they all are, but some may require you to reduce dosage before stopping them.
You really need to speak to someone, have you tried what I suggested?
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Thanks Gaz, I appreciate what you're saying. I've gone from discomfort to agony in a few days. I'm virtually immobile from the pain. It is no life. I have to be off the meds and be ready for the consequences.
I'm sorry, but by not even trying to contact someone, I think you are being both irresponsible & selfish.
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Honestly, I could write a novel with the conversations I've had with 'experts'. There's a point when enough is enough. Thanks for your help anyway.
Yes. It's like a deja vu event because I went through something similar for a different health problem which ultimately ended up with emergency surgery, but fortunately no more harmful meds. I now regret calling an ambulance when I had the heart attack. I should have let things take their natural course.
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Why can't you phone 111 or your GP tomorrow, you say you called an ambulance! Why wait till potentially you have to call an ambulance again.
Is there anybody you can discuss how you feel with?
I am so glad as every other member of the forum will be that you did call that ambulance and I hope with time and support you are able to feel the same.
Hi Supafil,
I hope your ok, I feel sure that overtime you will most definitely improve. It’s also important to remember that your heart is still mending and re- engineering itself and that can make your whole body feel wretched. Maybe you could possibly email your GP and ask for advice on yr meds or maybe someone could advocate for you.
Hi Supafil. I'm so sorry you are experiencing these issues. Reading your responses I'm concerned there is a bigger picture here and maybe it's not just your physical health now that's being affected. We are here for you to talk to and I do think that talking to someone close to you or a medical professional or counsellor may help. Please don't put yourself at risk because of bad experiences. Remember you're also still here because of the good care you've received from medical experts. You got this. If you can't speak on the phone please ask someone to help or email what you're feeling. Your life is precious. Look after yourself and keep safe
Supafil, I can feel your pain. I’ve been through this as well and it is difficult. I did not have the bad reaction to medication but I did experience a horrible mental state after my heart attack. It gets better.
Three months ago I had a heart attack and two stent procedures. The first month afterward was really bad for me, mentally. I would break down crying every day. I thought I was going to die every day. I wished the heart attack had just killed me. Then things started to get a little better each day. I’d go a few hours in a row without even thinking about my heart or my health. That felt good whenever it happened. A couple weeks later and I went a full day without thinking bad thoughts. That was awesome. It was becoming apparent that although it was happening slowly, I was healing and getting little moments of mental relief. The whole recovery time is kind of a blur but I did transition from feeling crappy all the time to feeling generally good most of the time, and it is still improving.
Looking back at the last three months I can truly say the mental recovery has been the hardest part. There have been days when I didn’t feel like it was worth being alive anymore. Those were often followed by days when I’d feel like I’m going to end up better than ever. The only thing that stayed consistent was that my attitude was always changing. It never stayed the same for long. The good times slowly started to outweigh the bad times, but I do still have bad moments. The difference now is that I’m pretty sure they will pass whenever they arise. And yes, sure enough, they do pass more quickly all the time. A couple months ago I would feel like I’d be stuck in those bad feelings forever. But they always eventually passed.
The app called “Calm” helped me a lot. I highly recommend it. It’s a program of guided meditation and it has really helped me get through this whole ordeal. My health anxiety was bringing symptoms that weren’t really there. It sounds to me like you might be experiencing that same thing. I’m still not even sure how the meditation works, or whether I’m even doing it right, but it definitely makes me feel better and I find myself using it for a couple seconds here and there throughout the day when I get stressed out or anxious. You might give it a shot. It gives your brain a little break and some rest.
Don’t stop taking your meds. Talk to somebody about it. The medications and amounts can be adjusted. I’ve had to adjust mine a couple of times. First I had insomnia from one of them. Then I was having strange heart beats (palpitations). Now I’m starting to get it all sorted out. I believe it takes the body a while to adjust as well.
Good luck to you. You’re not alone. A lot of people have experienced similar stuff. It gets better.
I hope you don't mind me asking but which meds did you change for the insomnia and palpation symptoms?
I'm experiencing both on a nightly basis and would love to get a good night's sleep
Cheers,
Paul
My husband has been similar with loads of side effects from the meds after valve surgery. He totally went doo lally last weekend when I had to phone for advice. Dr changed med slightly and he(5 days later) has improved. Please pluck up courage and speak to GP. You must take the meds and they can advise you re changes.
Situation has deteriorated overnight. Nerve pain has spread from hands and feet to arms and legs. It took me 5 minutes to descend the stairs whereas I normally have no mobility problems. It is difficult to describe the pain to anyone that has not experienced nerve pain.
I've skipped all meds this morning because my theory is that a possible heart attack is preferable to guaranteed crippling nerve damage. My partner is trying to speak with someone at the hospital on my behalf.
You MUST NOT stop your medication but you must ring your doctor. There are lots of alternatives to try. If you really can't speak on a phone then go to A&E or Urgent care in person. That's far safer than stopping your medication.
Too late, it's done. I am not taking those toxic meds again. My partner has been trying for the last 2.5hrs to inform the hospital without luck. I'm never setting foot inside a hospital again.
Hi Supafil if you have looked under different heart meds and the side effects you will find that there are many who have struggled like you are. I totally get what you are saying it's like you feel you are purposefully poisoning your body and the meds are taking away your power to heal. You are not alone so don't give up. It is possible there is another medical problem besides the heart and you should demand answers. Are you diabetic? What meds did they put you on? Be aware that the depression, anger and hopelessness is a very real and sometimes debilitating part of the HA and stents procedure. Things will not go back to the way they were but you most certainly with help and the right meds or should we say less invasive side effect meds, find a better life and learn to heal yourself. HA and two stents two months ago and was put on six nasty meds in which i am down to four and still juggling the side effects.
I have no diagnosed underlying health conditions save an eye problem. This all stems from a bad reaction I had to an antibiotic about 5 years ago which caused considerable nerve damage. It took me about 12 months to recover. Since then though, every medication bar a few exceptions has caused a recurrence of the nerve pain, some within hours, others over a period of days.
I had a reaction from what is supposed to be a well tolerated antibiotic called doxycycline. I ended up with scars after i broke out in blisters and suffered mild nerve pain. Hang in there just because it is rare does not mean it is in your head. There is only limited research done on new drugs and we are the test subjects so speaking out is a good thing.
It was ciprofloxacin for me (google that and floxed for a sorry story of all the people it is crippling). They switched me to doxycycline which had the same effect. Little did I know at the time the broad spectrum of drugs that were going to cause me the same problems. At the height of it I was unable to walk for a few months. It hasn't got that bad yet, but for example I am unable to drive now because I can't hold the steering wheel. When I'm med free though I eventually return to normal.
As I'm sure you know yourself, before you fall victim to some horrendous side effects you just pop the pills as you're told to without a second thought.
I know I can't begin to imagine how distressed you are with the side effects you're experiencing with your medication and am sorry it's having such a detrimental effect on your recovery. During the course of my career( over 30 years) I have met many people in exactly the same situation. They have also been prepared to go to the extremes of having another heart attack.
Nobody can make decisions for you, but as these drugs are very new to your system, they do take time, the body is very complex when it comes to adjusting to anything it's not used to as I know you've experienced before. Many people do find they are able to find a compromise, even if it just means taking the aspirin until things settle down.
I understand you don't want to speak to your GP, but perhaps your pharmacist can suggest alternatives or ways of gradually reintroducing medications one by one until you know which one is the culprit- which is often the case, rather than stopping all of them at once and increasing your risk.
I know you don't want to talk to anyone at the moment, but please have a look at the BHF website about recovery after a heart attack and cardiac rehabilitation, ( although this is online at the moment). There is so much to take on board so early on and the path to recovery really takes its toll on many people.
If your partner would like to ring the heart helpline to speak to one of the cardiac nurses, there is someone to talk to Monday- Friday 9-7 and weekends and bank holidays 10-4. The number is 0300-330-3311.
Thank you. I managed to speak to my GP today. The outcome of the conversation was that he said I needed to speak to the hospital. Rehab was my main contact point and we couldn't get through to them. Eventually we discover they are closed on Fridays. Via the switchboard we spoke to a cardio nurse who was sympathetic but ultimately couldn't offer much help other than to suggest I try just the aspirin until Monday when I will be contacted by rehab.
I can tolerate a few more days of pain knowing there is some sort of plan. I pray it doesn't get much worse.
Your GP surgery should have access to a pharmacist advisor who may be able to suggest changes to your medications in agreement with your GP. I would advise booking an online GP appointment where you can describe the side effects that you are having.
I've just had a lengthy and painful chat with my GP. Initially he misunderstood that I had ceased the blood thinners because he was keen to get my onto beta blockers and a different statin (both of which I stopped about 2 weeks ago). He then told me to keep taking the blood thinners. I reiterated that they are crippling me and that is why I stopped taking them today. He said I need to speak to the hospital.
My partner has been phoning the hospital all day and they don't answer. She has left multiple messages on the answer phone explaining the issue.
Zero progress, and I'm still in agonising pain, but hopefully it will not progress now I've stopped the meds.
Clearly you are making choices that you feel are correct for you.
I am not sure what you hoped people would say here? Most of us have experienced first hand the trauma and stress from a heart issue and the others have to live with someone who has it. Worse I would think to be honest.
The medication you are on is preventing a heart attack or stroke and is making sure the costly procedure you had has the best chance of a successful outcome and yet you say you would rather deal with it. And let nature take its course?
I guess that’s well and good if you don’t recover from your next one but what if it doesn’t kill you? Instead it leaves you disabled, reliant on caregivers or vegetative? Is this a natural consequence you are happy with? And for those who care about you?
I don’t want to sound brutal but you may want to explore all options fully before making such a final decision.
I don't think you have any comprehension whatsoever of the crippling level of pain I am enduring. The pain of the heart attack was a walk in the park in comparison.
You don't know what I expected from posting here but you thought you'd take the opportunity to have a go at me? Thanks. Fortunately others have been more helpful. I haven't had any solutions but I've been given some direction.
Honestly I don’t think you should stop until you see your cardiologist. I suffered for nearly three months on all the post bypass medication but unlike you I had frequent upset stomach and constantly feeling sick. However I took anti sickness pills and Imodium. It was at my 3 month check up with the cardiologist that he put me on just aspirin. But all my tests were good and he wouldn’t have if they weren’t ok. I used to have bloated ness which made me breathless and all sorts of strange pains - I see now a lot of it was stress.
Thanks. I expect to speak to the cardiologist on Monday. I took a clopidogrel yesterday evening (out of fear of dying) and have had a night of agonising pain. I may just try the aspirin today and push through until Monday.
My HA two stents was near two months ago. I never take meds as i am so chemically sensitive. I was sent home with ticagrelor, asa, rosuvastatin, pantoprazole, bisoprolol, ramipril. The side effects were everything from nightmares, trouble breathing, fatigue, aches and pain everywhere, horrible migrain like headaches, unable to taste, day long trots, blurred vision, depression, horrible bruising. It was an incredible challenge to walk let alone exercise. After a month of what the heck has just happened to me and what is happening to me i finally was given a cardiologist to video with. She took me off the bisoprolol and ramipril right away as they are known for side effects. After two more weeks she cut the 40mg rosuvastatin to 20mg every second day. Unfortunately the tightness in chest, chest pain, stomach pain, headaches, rawness in esophogus and throat, fatigue, and joint pain plus anxiety and depression are still very much a part of my life because of these meds that i have to be on. My biggest fear is of course another heart attack because when i went in to the ER with the worst most painful gerd plus dizzy, nauseated, short of breath and no energy i was sent home. The whole experience was terrifying including the next day. It is hard when you have such nasty side effects but i am not ready to give up. I hope you can get a good cardiologist as i did as she totally gets the bad side effects and tries to help as much as she can.
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