Just wanting a bit of advice AGAIN sorry. I've suffered from palpitations in the past which I took beta blockers for and they controlled it how ever the last few days during a flare I've been getting them all day and night to the point where it's keeping me awake. I've been back on beta blockers for the last few days and I'm getting no relief. My hearts pounding violently and very fast, at rest 100+ My heart seems to speed up for a few beats feels like my hearts flipping in a sac of fluid and then skipping a few which takes my breath away. I'm constantly aware of my heart and feeling quite breathless with it. I keep trying to reassure myself that it's just anxiety but during the night it's pretty frightening. Does anyone else suffer from this? Thanks in advance and I hope you are all well.
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sezzie
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Hi Sezzie, that sounds horrible and must be worrying. I don't have the answer I'm afraid to this but what I would say it sounds like something that should be run by a health professional/GP. I think anything to do with the heart and feeling breathless it is always worth doing. I hope things improve very soon for you though xx
I too had this last year, whilst going through a long flare. Certainly get it checked out, mine lasted annoyingly, several months. Once my meds were increased they faded away. However, when I had an ECG it picked up left bundle branch block and although not causing problems now, it means I have an awareness so try to eat healthily. I'm sure when your flare subsides so will the palpitations
Thank you for your reply. I had an ecg last October and it was normal so when my gp recommended another 1 last week I refused not wanting to waste their time although she did say if things didn't improve they'd do another so for peace of mind I will. I eat really healthily always have done although since flaring I've had no appetite. I'm pleased to hear that your palpitations have gone and hope they don't return! X
Hi Sezzie, glad your going to get it checked out. I was having bad palpitations a couple of years again and just happened to mention it tk mh GP during a visit. He listened tk mh heart and sent me straight tk A&E. He had me really worried as my mjm had just died frkm auto immune and 2 heart attacks. Whrn k got tl the hospital it had stopped. This happened again with another GP but it stopped again. I was also gettjng breathless. Both of them diagnpsed me woth Atrial Fibrillation. However ig was never picked up on.ECG or the 24 hoir monitor. A couple of weeks ago k started getting palpitations again though it felt slightly different. I've had low potassium levels in the past and it felt similar. After eating bananas and oranges it went away but kept coming back. It was low and i'm now on supplements.
Your problem could be completely different but thought i wojld give my experience. I hope they sort you oit soon. I know how scary it can be and how difficult it is to sleep. All the best.
I am so sorry to hear about your mum and everything you've been through and thank you for sharing your story with me. The palpitations have eased a little today I'm not sure whether it's the beta blockers working or because I've been resting loads. I'm at the Dr's on Monday for my b12 injection and if it continues or worsens I'll get them to do the ecg.
Sooo funny re the mistakes, crazy thing is I didn't even notice I also get more confused and forgetful when flaring and even lose the ability to write (pen to paper), oh the joys of lupus!
Hi sezzie, I'm glad your feeling a little better today. Thanks for your rely. It was a terrible time losing my mum as she was always so fit and seemed young until the last few months of her life. It has made me not want to trust doctors to much with my health as she ended up on loads of pills which badly damaged her liver too. That is the hardest part. It all happened within the
Last 3 months of her life. She did have a rare auto immune disease called Dermamyositis but lived quite well with it until the first heart attack.
This year I have started juicing a lot and stopped caffeine, dairy and bread. I did it briefly last year and it helped a lot but slipped back into my old ways. I also drank a lot of water. For the first times in pyears I didn't have stomach problems. So I'm sure I'm intolerant to dairy etc.
If it cures me obviously I will let you all know.
I have doubled checked my mistakes this time and typed on my ipad instead of phone so I can see a bit better.
Take care and I hope your palpitations improve. All the best xx
I watched a documentary on juicing a while ago and know of a friend with lupus who also does it and she swears by it, perhaps we should all give it a go. I hate taking so many drugs but sometimes we don't always have a choice but I do research everything before I start as I don't have a lot of faith in the medical profession either.
Thank you for all your advice and fingers crossed for being palpitation free. X
Hi Sezzie, it was probably the same documentary I seen. It was called " fat! sick and nearly dead". It was very inspiring especially as they had auto immune problems. I just don't want to lose the weight as I'm slim and find it hard to put weight on.
Jacqueline sorry to jump in on this, does this happen to you also when you try typing something it looks great but after you read it you notice all the spelling mistakes and miswords wrong words? This happens to me all the time lately and it is sending me loopy! Never thought this could be connected xx
Ever since lupus I get very forgetful, confused, and what I mean to say comes out totally different. Writing pen to paper is a no go, my 9yr old could do a better job. I love e mailing from my phone as I can check and re check my mistakes and missed words! I find it worse when I'm flaring so your not alone or going insane as I've thought about myself many times. X
Hi Gillsm, yes I get very confused and forget too. I often get my words jumbled when talking or writing and even forget how to write certain words at times. I am sure it's Lupus related because before I was diagnosed I forgot how to get to college on one occasion, yet I'd been there humdred's of times, and lived in the same town for years. On another occasion I forgot how to get to the supermarket. I thought I was going senile and I was only 22 . Also my family would laugh at me for telling them things I'd already told them before. I was really worried but they just thought it was funny. You will find it comes and goes. I haven't been able to find anything that helps. Maybe it's caused by inflammation? If I ever find the answer I will let you know.
I've had the paramedics out a couple of times being scared stiff from my heart racing..Its woken me in the night thudding away. The last time they came he wanted to take me in for tests as my pulse was well over 200 and its not the first time its happened. Don't know what causes it Sezzie, only that its frightening and very uncomfortable, and fortunately it doesn't happen very often. I did go in hosp overnight one time but discharged myself the next morning before they did any tests...My bp is normally ok, sometimes a little high and my gp once told me the blood flow through my kidneys is "a bit sluggish", I'd asked to be taken off them and she said no, then said about my kidneys but she was rather blase about it as if it wasn't serious. I'd always assumed they were for high bp...
Then I discovered on one hosp app that chronic renal disease is listed in my medical history and as I don't ever remember being told that, it came as a shock...I was at the dental hospital last week and it came up again. I also have asthma. If you're concerned about your heart talk to your doctor and/or the specialist you see....I should have asked a lot more questions over the years...
How could they not tell you about renal disease, that must have come as such a shock! Like you I've also been admitted to hospital with very high bp (which I've never suffered from) and a pulse rate of 170. That was last year during a really nasty flare and was passing out with the pain so my hubby phoned an ambulance and they were horrified at how high my bp and pulse was. I was in hospital for 3 days and it wasn't really mentioned again so I assume it returned to normal. You are right though as it's so frightening as you get to the point where you think your hearts just going to stop under the pressure.
I'm going to take your advice and ask more questions from now on. Take care, I hope your well and thank you for your reply. X
Importantly....you must go to see your doctor ASAP to make sure your palpitations are not dangerous.
Now for my story.........
I had really bad palpitations for about 3 years.
I was seeing a cardiologist and and interventionist (cardiologist who puts in pacemakers and does ablations etc)
It got really bad so they were thinking of doing an ablation on my heart to stop the palpitations.
I was put on Bisoprolol (beteblocker) and it helped to control it, although it was still there but not so bad.
I was discharged today because they are much, much better!
Going back three years I was having a really bad flare that was being very stubborn and I was quite ill. At that time I was put onto Mycophenolate for the first time and that was when my palpitations started.
I blamed it on the Mycophenolate but all the doctors insisted that Mycophenolate did not cause palpitations.
I had every test you can imagine, including a cardiac MRI.
Then last July I had another flare and my really lovely dermatologist gave me a weeks treatment of steroids.
The palpitations cleared up in only a few days after taking them.
So all the doctors are of the opinion that although my ultra sound scans were normal there may have been a microscopic amount of inflammation in my pericardium (the sack that surrounds the heart) and it might have been just enough to cause the palpitations.
Anyway....they have virtually disappeared and I think the steroids got rid of them??
They all seem to agree the same.
That was my story, but yours might be different. In any case you should get yourself investigated ASAP.
I hope that might have helped and I wish you better soon.
That all sounds awful poor you and the things we have to contend with! I'm pleased to hear that your better now. I must admit I have been a little worried that it might be pericarditis especially as I'm flaring. I had a steroid injection which really helped for a few days but then I went through a very stressful situation and it set me right back and that's when the palpitations started. The beta blockers have helped but it's still there so I'm definitely going to mention it at the Dr's on Monday. Thank you for all your advice and pleased to hear that you don't suffer with them anymore.
Yes she is right it could be your pericardium. I had the same and often get pleurisy and pericarditis. Good luck and make these doctors work for you. God Bless you all.
I am so sorry you are experiencing this. I do.as well.and worse when I go.to sleep it wakes.me with in minutes. I was told its from severe anemia. Hope this helps. Have you been tested? Good luck and God Bless.
I'm sorry to hear that you suffer from this too, it's bloody awful. I don't think that I've been tested for anaemia although I do have pernicious anaemia so maybe this has something to do with it. I started talking beta blockers a few weeks ago and they have really helped, have you tried these? Thank you for your reply and I hope you manage some rest with the dreaded palpitations. God bless to you too. Sarah X
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