Hello to you all - this is my first post, and I'm hoping someone out there will have had (or be having) a similar experience to mine. I had a HA in May last year (2021), and was in and out of A&E three times following that event due to not feeling "right". I guess many of you have experienced that following a cardiac incident? As time has moved on I've started to feel better, but I still experience an "inner shaking" if I overdo anything. For example if I spend all day on my feet, drive for more than a couple of hours, or go on a long walk (all of which I used to be able to do without any issues). Since the HA I get a feeling inside similar to that feeling you get if you walk down a long slope for too long and your legs turn to jelly. I get this feeling all over, but there is no external physical sign of it. It takes a good night's sleep to get rid of it, and sometimes I have trouble getting off to sleep (something I've never experienced before). As I worry about it, the situation gets worse and I'm almost convinced of other symptoms. Does anyone else have this feeling? I've booked an appointment to chat to my GP about this, but am wondering if anyone out there can say they've felt the same way? Thank you for your time.
Hello - I'm new on here. : Hello to you... - British Heart Fou...
Hello - I'm new on here.
It used to be that most people experiencing a heart incident or heart surgery were offered a place on a face-to-face Cardio Rehab course. These were six, one hour sessions, at weekly intervals in a group of about twenty people conducted by experienced cardiac nurses in local civic centres on behalf of the hospital were you were treated.
You would be taken through an educational programme to explain in detail your medication and recommended life style changes, these are the two weapons in your armoury to prevent a reoccurrence, so it's essential to deploy them both to their very best effect.
Hopefully. as the world gets back to normal, Cardio Rehab courses will start again. Many people on this forum found them invaluable for dealing with the kind of effects you mentioned. Alternatively, the BHF (who sponsor this forum) run an on-line cardio rehab course.
It's a fine line, making the life style changes that will materially reduce the chances of another heart attack, while not overdoing things. Cardio Rehab training gives you clear answers on things like personalised safe zones for heart rate during exercise and the proper procedures for warm-up and cool-down. It really is time well spent.
Good luck!
That's great - thank you so much for your reply. I'll check out that online Cardio Rehab course.
Ask your doctor about referring you if you are seeing them. Good luck. Brian
Hi, I had heard so much about cardio rehab only to find out they don’t do face to face sessions where I live. I am gutted as I was relying on this for my state of mind and to meet similar people etc. It’s four weeks since my HA and stent and now I am on a wait just to speak to the physio. My cardio appointment yesterday was just paperwork and a chat, a nice chat but that’s it now 😔
I am very very lucky. My area seem to have a very good cardiac rehab structure. I had stents fitted last October, I was signed up to start 6 weekly rehab sessions starting January, then came along Omicron and they didn't start until February and I had booked a holiday so couldn't complete the sessions. I came back a couple of weeks ago and received a letter from the Cardio physios for me to have a check up where is was decided I should go back to the rehab sessions so I started back on Wednesday.
Obviously the Welsh Government have decided that f to f sessions are important and restarted these but it seems that it does depend what area you live in what after care you get.
Dear FleetCaptain
You have just described the feeling that I have been getting for a while, I put it down as a wobbly feeling throughout my body and definitely was not brought on by exercise.
My heart nurse pondered on this for a while and could only put it down to some form of side effects of the drugs that I was on.
I told her that I was willing to put up with it as the combination of the drugs I’m on seem to be {other than this} be doing me good.
Thank you for posting this with better description of my odd now and again feelings.
It really helps to know that its not just me for once !
Take care
Hello - thanks for the reply. I'm sorry to hear you've experienced this too. I did wonder whether it might be the medication, so I'm going to talk to my GP. When I get this feeling I can't really do anything else for the rest of the day - except worry, of course! It's reassuring to know that others have experienced it, although I do sympathise with you. I'll let my GP know that I'm not the only person to have had this feeling. I've actually cut right down on the exercise for now, which is frustrating to say the least. Most annoying is often feeling it when I've just been driving for a while. It certainly needs to be sorted, as it's caused me so much worry, especially the first time it happened - I ended up back in A&E. They sent me home saying "It's not your heart". No-one mentioned the fact that it might be my medication though. So your message is very useful, much appreciated.
Dear FleetCaptain
Thank you for describing the feeling I have had for 18 months. My legs don’t want to work. I don’t know what I can do about it.
I keep up moderate exercising.
I too have not had the promised rehab.
I wonder if your Air Force position might put you in touch with a good physio, who could carry out the rehab.
I worked very hard at getting good sleep. Eventually I succeeded in getting off to sleep at the same time each night and getting a good “eight hours”. One trick is to use a tinnitus relaxer. About £30. Worked wonders for me.got me off to sleep every time.
Best wishes
Colin
Hello Colin. It's reassuring to hear that others also have this feeling. I was dreading the fact that it might be unique to me. I'm not in the Air Force, but I have an appointment with my GP scheduled for April 8th to discuss my medication. It's approaching the year since my HA, so a medicine review is due imminently anyway, and I'll be asking him if maybe the bisoprolol could be working to slow my heart right down, and at times my body needs the opposite to happen. As a consequence I feel shaky. I may be completely wrong of course, but I'll see what he says. I'm also going to speak to him about having cardiac rehab meetings, if they're available anywhere. Thank you for your message.
Hello Outoftheblues. Thanks for that reply. I needed that. Replies like yours are just the tonic I need to help me through this. I was known as a really positive person, but a lot of that has gone since my HA. I'm worried about what I eat mostly, but also am scared to exercise too much. So again - thanks for the motivation. I'll make a better effort.
I can understand that has well I find walking is the key I don’t start well but when I get going I am fine feel so much better. Plus the food I am very aware now of what I eat I suppose we are all like.
Thanks Ruby300 - I have always eaten very well - healthy options, getting my five-a-day etc - but I know I need to exercise more.As you've no doubt read, I'm going to work on that.
Right - will do. I'll speak to my GP and tell him I need to get on to one soon. I'm currently only doing short (1 - 3 mile) walks about five times each week, but some are literally just ambling along. I know I need to push myself further, but currently I'm afraid that I'll end up feeling shaky, so I don't push myself at all. That mindset clearly needs to change. And if I want to banish (or at least reduce) these shaky feelings, then I must do more. Thanks again.
Hi, what helped me to progress in my walks is to get a heart monitor. As long as my heart stays below 140 I can push myself further. After 1.5 years of cabgx4 and half a year after a heart attack, I walk 15 miles easily with some good hills.
Noted - thank you for that tip. It appears that I need to get walking more, as well as attending a cardiac rehab exercise program.
I'm lucky - I have a very good GP, and we get on extremely well. I'll ask him to get me put on one....assuming they are doing them again now.
Hello 
I cannot add more than what others had said already but wanted to say Welcome and I hope now you have found us you do not feel so alone with how you feel
I hope everything goes well with your Doctors appointment and you will let us know how you get on x
Hello - thank you for that. It’s great to know there are others to talk to about this. It’s been worrying me a lot. I will indeed let you know what my GP says.
I think a lot of us get worried a normal reaction but after we wonder why we did as it never seems to be as bad as our imaginations think it will be
I am sure you will be fine x
I hope so. Thank you.
HiI had a HA on Boxing Day 2013 two stents fitted and a load off meds as well to take for life.
All the things you have mentioned I have gone through and still am.
Buy all means get you yourself checked out with your GP and cardio team but don’t get your hopes up to much.
Just remember you are a live and doing well always think off the positive and not the negative things.
Good luck
If you are in any doubt dial 111 for there advice 👍
Hi Cookie2020 - thank you for those positive words. It helps a great deal listening (reading?) all of these posts from others who are (or have) experiencing this feeling. I'll try altering the meds first, plus getting onto an exercise rehab program, then see where I'm at. 🖖
Hi Fleet captain, it's been 2 years since my H.A and I still have days exactly as you describe, initially it was so frustrating for me because I was hearing so many positive stories of how well some were doing after their cardiac episode, that I started to think there was something no right with me,got test done in hospital but told all was good!!so I continue to eat healthy, exercise and feel shaky and weal afterwards and I put it down to side effects from meds,I've started counseling and tbh I find it's helping me,I never had anxiety before this,as I've never had alot of health before this..so after 2 years I'm still working my way through this journey,I'm different things and life for me have changed but I'm grateful I'm still here,so good luck to you and take care !!!
Hi, I was recommended to read the book: ‘the healing self’ by Deeprak Chopra. This book gave a good explanation of what you can do yourself to help your body heal with lots of research background. For me the most important part was how to deal with stress and insecurities after my op. I now use it more as a reference book to go back to when I need it.
Sounds good to me fit4walks, much appreciated info!!👍👍
Hello fit4walks - Thank you for the recommendation. I shall seek out a copy of said book. Take care. 🖖
Hello Sunnysummerdays - thank you for those kind words. It's nice to know I'm not the only one experiencing these feelings (although I wish none of us had to), and just talking to you all has helped me a lot. This is a wonderful forum with lots of great people on it, and it has made me feel more positive already. I have taken note of what you've said, and will let you know what my GP says following my appointment next Friday. 🖖
Good morning, I had HA last March same sort of thing really in out of hospital couldn’t find anything then bang I had a massive one. I didn’t get to rehab because of the virus so I did a plan for myself walking etc. Year on I sometimes feel how you are feeling but last month I made app with my doc told her everything she said she has found that all her patients who have had HA have had the same thing she reckons it is the tablets but which one she doesn’t know. She stop the Ticagrelor 80mg because they have to but she gave it back again at 60mg which I have to say I feel so much better in myself. I wish you well. 😊
Thank you for this info Ruby300. I'm on bisaprolol, but will be talking to my GP about coming off that. I've been on it for eleven months now, so I think it's time. 🖖
Hi FC, that is what I am on you have to be on it for a year then your GP will tell you what will happen after that. In my case we both received a letter from the cardiologist saying stop that dose which was 80 mg then she put the dose down to 60mg Which I must say I felt so much better. 😊
Right - thank you.
Hi Fleet Captain. I also get these shaky feelings which are accompanied by tremors in my hands. They are not caused by exercise but I do find they get worse if I am emotionally stressed. My cardiologist thinks there could be a connection with my Flecainide tablets but I am loath to change them as they work so well. If you take Flecainide that might be the case for you as well. Just a thought and hope that helps.
Hello TopsyJones - thank you for this. I'm not on Flecainide, I'm on Bisaprolol, and I will be talking to my GP about coming off this. But it sounds like this might help a bit (coupled with getting fitter), and I appreciate you getting in touch.
Welcome. Live long and prosper ❤️
Thank you - you too. 🖖
Hello Fleet Captain..
Yes I've experienced all of the above that you have mentioned..! Which led up to me having open heart surgery (triple bypass) at age 68.
I will be 88 in August. I have functioned well ever since, very active, play golf at least once a week, sometimes twice, do the gardening etc. Since having the heat attack I was hit again ten years ago with a abdominal aorta aneurism, when again required major surgery. But as I said I got over it.
I do get very tired sometimes after playing golf, or working in the garden, house work.
I guess the next step is your GP will refer you to a consultant, and he or she will decide what's best for you, you might only need a stent (noninvasive surgery ).
Whatever, I wish you all the best of luck, and may the Lord be with you 🙏.
Terry.
Hi Terry - Wow, you've been through it all. Makes my issue seem insignificant. I admire you - you seem to have stayed positive throughout. Stay that way, and look out for my post informing you of the results of my GP chat. Dave.
Sure will Dave , take care and all the best 👍. Terry
Hi FleetCaptain,You seem to have opened up a subject that affects most of us. Had HA non STEMI on Dec 9th. All that followed no doubt experienced by so many others. Shock, disbelief and terror. No blood pressure, not overweight, active, no family history particularly. One major thing mind which they can’t measure, STRESS all my life, childhood experiences etc etc. Anyway, fact! I have heart disease, one stent and other arteries reasonable. Like you mind, unexplainable physical symptoms from day one. Convinced Stress and medication the culprit although I am on same journey of doubt and uncertainty. Dizziness, weakness, headaches, tight chested, terrible abdominal pain. We are coming out the other end hopefully. After 3 weeks took me off Bisoprosol, baby dose all be it. I was actually fainting nearly my pulse was so low.
What I have concluded is that We are given pretty much the same drugs with different doses depending upon blood pressure etc. if I hadn’t pushed and protested then I would still be on a drug that I didn’t need ( confirmed by the Consultant ) which was making me ill and no libido with a brain dead pulse!. Also insisted after 2 months blood tests as I was convinced 80mg statin wasn’t appropriate for my cholesterol history! I was correct, it demolished my LDL. So they agreed to 40 mg. So again if I hadn’t been proactive and make a nuisance of myself then I would still be on a donkey dose of 80mg. I intend to have another test next month to see if I can reduce again. If I need 40mg I will accept it mind. What I’m saying is most of us can logically see if certain doses of drugs are not needed still respecting that the vital ones, aspirin and anti coagulants, blood pressure meds etc have to be beared as life savers. In spite of my stomach being in much turmoil I have continued with the aspirin and anti coagulants as I accept they are protecting my life. However the Bisoprosol and the donkey dose of statins I didn’t need apparently. In addition after much suffering and stress to get them to change my stomach PPI, costs them nothing but I had to make a nuisance of myself and tell them (GP) I wanted to try anything to alleviate my pain and suffering . They gave in again, but after much STRESS again. Guess what? My tummy improves immeasurably.
In terms of treatment, the ambulance team, a and e, Peterborough cardiac for 4 days Papworth stent day 5, all fantastic. I am forever grateful. But on discharge I felt dropped, terrifying with lots of papers and medicine I didn’t understand etc. I do get it though, bless them they don’t have the resources. So next back up a cardiac nurse, took a while for a call but again and until now absolutely life saving, caring, nurturing, professional. I don’t know what I would have done without her. Eventually as many responders have conveyed you I have gotten a cardiac exercise class, been to 2, please do it asap. 4 nurses and 4 patients for an hour. Gave me more confidence in 2 weeks than I have had in 3 months. Again I had to ask for it and express how much it would benefit me. As I need to be physically around people who have gone through what I’ve gone through and have Nurses that truly care monitoring me for an hour and tell me that I am doing well and my heart is responding well! As for GP practices, I can only speak of my experience. I know there are good ones! My experience have found them to be absolutely hopeless, a money making organisation who pass the book. But We can’t have it all. I grab as much help as I can including mental health help. Don’t be ashamed to say “ I feel so vulnerable etc” I do and in the end I get the help. I know some people can’t do this, We are all different so please allow people close to you to ask for that help if you cannot 🙏❤️
Hello Anxiouslifetime - thank you for that. I hear you, I really do. I'm going to talk to my GP (and I'm lucky, he's known me for years and is brilliant) about coming off the bisaprolol and maybe (after a blood check) lowering my statin dose. I will also push him to get me onto a rehab exercise program, as lots of you on this forum are recommending doing that. I'll post the response I get for him on here after my appointment on April 8th. You take care and remain positive. 🖖
Hi I feel really jealous that everyone on here has had rehab like I said before last year when I had my HA in March I was supposed to have it but because of the virus they said it wasn’t going to happen. I remember after two months passed I did ask if I could have the rehab I was told it was to late now they are only dealing with people who have HA now not two months ago. I remember going to the GP I ask her she said unfortunately she doesn’t get involved with that side of things so the answer was no. So I decide to do a plan for myself. I wish everyone well on here that get to go. 😊
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