HI, and thank you for reading my post. Sorry its a long one, but I want to give as much background as possible in case this post also helps someone else. Please bear with me and read it to the end!
So. I had my first identifiable (slow) AF event 2 months ago after having a few episodes of fluttering and not feeling great occasionally after exercising intermittently over about 5 years. I had never heard of AF so thought I was just unfit.
When my first significant one happened 2 months ago I went to A+E and they medicated me back to NSR with Flecanade and put me on a ward for 2 days while my HR and BP came back down. They discharged me with Bisoprolol and Apixaban. I struggled with terrible trembling when I tried to sleep which went on for weeks and I was very anxious and depressed and felt ill all the time.
I started to feel better after about 6 weeks and thought I was turning a corner, but then BAM, one morning out of the blue I had a sudden attack of very fast HR and big ectopic beats intermittently, it was like a shoot out in my chest. It was very frightening, and thank God it only lasted a few minutes. It had stopped by the time the ambulance came. They didn't take me in, but then the following night it happened again in the middle of the night and woke me up. Again, short and stopped by the time the ambulance came but they took me in for checks and all normal so came straight home. Spoke to 111 who said increase Bisoprolol to 7.5. The events kept coming every night, sometimes 4 a night, so they increased my Bis to 10 which made me feel really unwell and my anxiety level was dreadful. I was shaking constantly and in a really bad way emotionally. Not sure how much anxiety was my situation and how much was the Bis, I suspect 50/50. But the events kept coming in varying degrees, some bad, some more mild and didn't escalate to when the ectopics would kick in.
I was fortunate to have already had contact with a private cardiologist who had done a 7 day holter and eco for me as the NHS is not currently able to. So I managed to speak to the cardiologist and she recommended to my GP to switch me from Bisoprolol to Diltiazem 60mg. 2 days in and although feeling much better generally, the events were still happening but milder. The GP had me admitted to hospital to an observation ward, who increased my Diltiazem to 120mg which put my heart rate up to the high 90s all night and it pounded like a piston in my chest all night. They reduced it to 90mg and sent me home saying there was no point me being there, which I agreed with as it wasn't a ward with cardio expertise.
So, I have been on Diltiazem 90mg once a day for a week now, and while I feel ok during the day apart from my HR being a bit on the high side and often sits around 90 when I'm just chilling, I'm still having these episodes of my heart pounding and racing for a short burst each time I wake in the night, even just to change position in bed, my heart goes wild and I have to do breathing exercises for about 10 mins or so until it settles back down. The GP has now given me Pregabalin 25mg twice a day to try to reduce any adrenaline in my system in case that's driving the events, but it didn't help last night after my first day on it, even though I was pretty chilled yesterday
Has anyone else experienced this? And if yes, did you resolve it and how? I'm not experiencing any day time events of AF or racing heart so it's just bizarre that my nights are so volatile.
Thank you for reading if you made it this far!
Kind regards,
Katrina
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KG70
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I haven't dared try to take a nap. I was diagnosed with mild resistant sleep apnoea a while back, and they gave me a CPAP but I really struggled with it, and since losing a lot of weight my snoring was much better. I did try the CPAP again a few months before my AF diagnosis but it gave me palpitations so I didnt persist. I'd had a follow up at the hospital and told them I wasnt using it as I couldnt get along with it, so they tested the machine and it wasnt working properly so they gave me a new one and a better mask. But the new machine seemed more powerful and I couldnt cope with it as it made my heart pound. I've gone back over my heart rate records to before my AF diagosis and there are very few HR spikes in the night, but there are a couple. But they were not particularly high and didnt wake me up. I don't know how high my HR goes on the current attacks but it feels high. I'm going to get a better HR watch as my current one only records my HR once every 5 mins so catching the peak is highly unlikely. If sleep apnoea could be a factor I'll call the hospital next week to ask if I can adjust the settings to calm the machine down so I can try it again.
Dissapear? I didnt think that was possible! I have been sleeping on my back since diagnosis as when I had the constant shaking I couldnt lay on my side as it was more agressive. But since getting off the Bisoprolol the shaking has stopped so for the last 2 nights I have laid on my side and have been much better. Still waking up with my heart beating hard but its not rocketing. But it does go to up to 100bpm when I wake up and I can't move off the bed for 2 hours until my Diltiazem kicks in. I'm hoping that a medication adjustment will help with that so waiting for a GP to call as the private cardiologist who recomended the Diltiazem is on holiday so I can't get her input. I will add an update if I get some progress and improvement. Thank you so much for your input!
To me it sounds like you're suffering from normal paroxysmal atrial fibrillation (PAF for short), it quite often starts in the middle of the night as you describe, but for most people the events go on for a lot longer. What were you told your heart was doing when you first went to hospital and were admitted? Or were you like most of us and too bewildered by it all to ask?
It is all a bit of a shock when we are first told that something is going awry with our heart. When I was first diagnosed 15 years ago, like you I would take myself off to A&E if it didn't stop within a few hours and was often admitted to a ward. The thing to remember is that AF is unlikely to kill us and the more anxious we feel about attacks the worse we make them. I know how hard it is not to feel anxious when it kicks off and one major thing I've learnt is that worry feeds AF and can make an attack so much stronger.
What do people do to cope with this and calm their attacks? Some can halt an attack by doing slow, deep breathing. Some listen to the radio or read a book - anything that takes your mind off your heart.
Magnesium as a supplement has helped many, it can be taken as a pill, in oil or spray form rubbed on your body, or as a powder added to your bath water. However, I would say that the thing that has helped me most is changing my diet to a more plant based one. I also avoid any food, alcohol and drinks that contain artificial additives. I read the labels on everything before I buy. I know for sure that artificial sweeteners were a certain trigger for my AF attacks.
All my meals are cooked from scratch by me and I can assure you that I miss out on nothing. I've reduced eating small amounts of red meat to once or twice a week. If you need help with any recipes, let me know, but I tend to stick to a lot of old fashioned meals. Last night I had chicken curry, the night before fish pie, at the moment I'm cooking a roast dinner. In between meals I snack on fruit and also mixed nuts (would recommend the ones from Sainsburys in the orange packs as I think they taste the best). By having snacks throughout the day you don't need such large meals.
I've been on this forum for a long time and have taken note of all that has been suggested to help reduce attacks. Some that I think are really helpful are drinking natural coconut water (I buy the Innocent brand, from the chilled drinks aisle), avoiding sugar as much as possible and not overeating.
Hope this helps you and know that we have all been where you are with your AF right now. We understand and can give support.
Oh another tip for when you wake up in the night and need to get up. Lie still for a few minutes, until you're fully awake, move slowly into the sitting position on the edge of your bed sit for a few minutes, then get up slowly. Also a lot of us find that sleeping on our right sides reduces attacks too.
Hi Jean, i am now finding lying on my left side sets an attack off. I thinknwhen pillow touches neck, or car seatbelt, i feel the warning flicker. Also when turning my head to left! I am assuming mine all started with stimulation of vagus nerve but just running it by you as your answers always good. Hope your breathing tech ique still working. I also use it
So many of we AF people find it better not to sleep on our left hand side. It was someone on here who told me about it many years ago. Until then I'd always slept on my left. Glad knowing that has helped you.
Hi Jean, You mention that you have changed to a plant based diet and feel better for doing that. You then talk about eating red meat and chicken curry? To me a plant based diet excludes meat..... I'm wondering what you mean by a plant-based diet?
Lots of vegetables and salads, sometimes with small portions of meat or mostly fish. Mushroom omelette with salad, salmon cooked in honey and mustard with salad. I do eat chicken, with roast dinner, curried and in a stew. It's more plant based now, than it used to be and I eat very little red meat. I am not a vegetarian.
Thank you so much for all of that information, I really appreciate you taking the time to share it with me. My diet is much the same as yours. I did a health and nutrition course a few months ago and am sticking to the principles of it. So no processed food, little red meat, several portions of assorted fish, lots of vegetables and salad. I will order some coconut water, but I'm wondering what it does to help?
As you suggested, i tried sleeping on my right side and its deffinately helped, but I'm now finding it bery painful as I have been sleepign on my back for 2 months and my hip is now complaining! I'm hoping that will ease as I have always slept on my right side before all this and never had any pain.
I'm going to try my CPAP machine again to see if I can cope with it, but with my heart rate running high I don't know how that will be. I really need my medication sorting to keep my HR stable and I think that will be half the battle. I woke at 6 this morning wiht a HR of 100 and it didnt calm down for 2 hours after I took my Diltiazem. I literally cant move for 2 hours after waking which is tricky when I need the loo! I'm waiting for a call from the GP to see if he can help with this problem. I will post an update if I get some help and improvement.
Thank you again for all your advice, I really appreciate it!
There was a similar question quite recently and I posted a link to an article suggesting numerous reasons for this happening. If you go to my profile and click on Replies you’ll see it.
Hi Buffafly. Thank you for that. I have tried to find it in your replies but I can't. Could you please tell me teh title of the post to help me locate it please? Many thanks, Katrina
Like you I suffered a lot of AF at night/early morning. Just stretching to put on a bedside light or changing positions would bring it on. It was very frightening. I had to sit at the side of the bed & wait for the nauseau & faint feeling to pass. I have had a heart reveal device fitted in nhs hospital (information online) & it records the heart continually it has been in for 2years & has helped my cardiologist diagnose af & see the effects of Bisop & Flec& Diltiazam. I have found Diltiazam now on 300 has helped get rid of the fluttering feeling & Digoxin helps slow the heart rate. I still get days of feeling exhausted due to pernanent af & hr never much less than 80+. I have had 2 ablations & these have helped improve the condition a lot. I would agree with all of the replies so far. Also... I found a very low dose sleeping tablet that had to be approved 1st by cardiologist a great help & helped me feel refreshed after a peaceful night of sleep after nights if not sleeping due to af & the anxiety it can bring. I only used them v occasionally & certainly they are not a long term solution but maybe?? speak to your gp/cardiologist as to whether they would help. Do let us know how you get on
I did a video for this forum about un-diagnosed Sleep Apnea .It is such a throwaway side issue it is scary, whereas in reality for me it was the cause of my AF according to my current Cardiologist and since agreed with another. I had no idea that with 68 episodes of SA an hour I was helping my heart stop and bringing on AF. My sleep clinic can monitor and change settings remotely and in the early days they certainly had to. I still have AF issues but after years and years of not knowing I had sleep apnea i'm not surprised. I would highly recommend you get the Cpap on course and see what improvements happen. The first two months of using the machine are very hard as you have experienced, but two years on I have thankfully mastered it and get a good nights sleep and reap the benefits. Good luck.
Thank you very much for that. I'm coming round to accepting that I do have sleep apnoea since reading the replies to this thread. I was diagnosed with mild apnoea a few years ago but I wasn't really convinced it was affecting me much. Then I lost weight and bought a good mattress and felt much better. But having spent the last 2 nights on my right side my events are much milder so I'm now thinking I need to master the CPAP!
Oh we hear you! It is such a distressing condition especially when one is given pills and no information as to management. This forum really helped me come to terms with my AF though it's an ongoing journey. Jeanie's advice is good. I use a Kardiamobile to track my AF episodes because I'm someone who likes information. I also track my BP as this is often a sign of being stressed. I also changed my diet - no alcohol at present, low sugar, very little gluten, no processed foods. Maybe have a look at The Dr's Kitchen for delicious ideas. Anxiety is our biggest enemy - it increases the heart rate anyway, stops us from resting and ruins our quality of life. If you need it, get help with that aspect rather than more and more pills. I did a thread a while back on how the distract oneself during an AF episode. Check it out via my profile. People were so generous with their tips for management. Plus you'll have a laugh.
Thank you very much for that. I'm trying to do all of the things you mention, and I'm working hard to ease my anxiety but I am finding the Pregabalin is helping a little, but I don't want to be on it long as its a controlled drug as its addictive. I will check out your profile, thank you very much! All the best, Katrina.
Try and ditch the sleep apnea with a Lifestyle change rather than CPAP i.e. improve your breathing through your nose. I have just read James Nestor's new book 'Breath' which is not a dry medical book but an easy exciting read and full of advice - instant best seller, also Patrick McKeown, Oxygen Advantage has a similar approach. A second suggestion would be try having a quiet hour of Mindfulness & add prayer (if you have a faith) before you go to bed. Hope something there helps.
I have this. If you can afford it buy a Kardia mobile from Amazon they are about £99. You download an app on your phone and put your fingers in a little device which records your ecg which you can email to yourself or someone else and print off. This proves mine so far are sinus tachycardia and are either a reaction to the drug Bisoprolol or the fact am coming off it. You want to be sure they are treating you for the right arrhythmia . My cardiologist completely accepts them as accurate .
Am the same . If I stretch or move it kicks in. Normally only lasts a couple of minutes . Mind you this morning my heart rate has been raised for over an hour so far . Drug or withdrawal or both no way of knowing. Big hugs the whole thing is horrible
Hi Katrina
When I was first diagnosed I was convinced that stress was the cause of my af.
My GP gave me some links to relaxation courses. She also gave me diazepam if Kalms didn’t help. I then got an IAPT referral (not sure the whole of the U.K. has IAPT as part of their MH services ☹️) I did a 6 week course using a stress control work book by Dr Jim White and made myself listen and do the homework.
There’s lots of material out there but I found it really helped hearing someone tell me that to manage my nights I really have to manage my daytime anxieties, also offering techniques for doing that
I’ve had quite a bit of af treatment since then but threw out the Kalms and diazepam a while ago.
I would recommend taking any opportunity for stress control you can get!
As others have mentioned, when you wake up with heart racing, it is a clue that you may have undiagnosed sleep apnea. A huge percentage of those with AF have sleep apnea. Treating it appropriately can have an enormous difference. If you have not yet had a sleep study, it's important to have that as much as any diagnostic test at the beginning of your AF journey.
Just to add my 2 cents. I take 1 mg of Lorazepam every 6 hrs to keep my heart calmer and more inline . Or else my anxiety really kicks in and I can feel I just steps away from an attack.
Anyone else doing this? The doctors haven't given me an opinion one way or another.
Other than to say do you really need it? I feel much better with it.
But I'm aware this is not the best choice , yet they don't give me anything to replace it.
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