Hi, I am new to posting but have been reading for some time. I was diagnosed with afib in 2021 and also had a stroke caused by a brain bleed. I am now in PAF which kicks in every 2 weeks or so, lasting a few hours. When this happens I usually have a "funny turn" , feel a bit faint for a few seconds and then am OK. Sometimes I have actually passed out and sometimes I have uncontrolled shakes a bit like a fit. On Friday I landed on the deck before breakfast and had several "turns" and episodes of the shakes which continued into Saturday till the evening when it all disappeared back to normal.
I am on Edoxaban 60mg, Spironolactone 25mg, Bisoprolol 5mg and Ramipril 5mg.
My question is does anyone else have similar symptoms? Thanking in advance anyone who replies. Jan
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Spanl5
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It sounds as if you are having ‘conversion pauses’ but whatever it is you should be asking a medic what’s going on asap. Ideally you should have a monitor to see why you are having these ‘turns’. It would have been a good idea to call 111 or go to A&E while you were having the shaking episodes but probably Sod’s Law says they would have stopped the minute you got there! Please call your GP first thing Monday ❤️🩹
Thank you for your reply. The shakes only last a very short time not really sure how long as incapable of doing anything during them. I saw a GP in Dec about it in case of epilepsy but he said not as no tongue biting or urination and he thought anxiety and would counselling help. I did not like his explanation ( but do believe not epilepsy) but it was left at that. I have had 24 and 48 hour monitors in the past but nothing ever seems to happen when wearing them. Sods Law as you said. My Edoxaban is due for review soon so I will try to speak to the clinician then. My confidence in GPs is rather low at the moment., another one prescribed antibiotics that the leaflet said not to be taken by anyone with a history, or family history, of heart rhythm problems!
Oh that makes me so mad! 😡. I’m guessing you are female? Why oh why do GP’s insist on putting everything down to anxiety & usually fobbing us off with anti-depressants! I hope you manage to get somewhere with the medical profession soon 😊.
I confess that I had to laugh too. Only because it has happened to all of us woman. Males doctors the absolute worst. while in my early 20's I am now in my 70's, was ill almost constantly with low grade fever, achy, just felt all over awful. Dr after dr found no reason for it. I had a two week stay in the hospital they ran all kinds of tests, the only test that came back positive and they ran it twice, came back positive twice was for typhoid fever. They sent in two psychiatrists and I ended up with valium and was sent home. threw it in the garbage. Still had a low grade fever and still felt horrible until I found a doctor that prescribed a good all over vitamin and he had me take a double dose. I started to feel better in about 2 months. That experience had really soured my trust in doctors. it is really hard to find a good one.
Totally agree with you. Very annoying isn't it? I've been fobbed off a few times with anxiety and have two lots of anti depressants which I never took. After they told me nothing was wrong and it was anxiety, I ended up in hospital with a suspected heart attack! I am female and elderly. I think that says it all!
Other than the shakes this is similar to what I had, took a long time with numerous monitors and tests to discover I had heart block and needed a pacemaker. You need to see a Cardiologist and get a monitor for at least 7 days and if you know when these attacks are likely to happen have the monitor to cover that time.
Don’t be fobbed off by your GP or Cardiologist, as females we are often not taken seriously especially with heart problems so you have to be insistent and proactive in getting the right care.
With epilepsy, you don’t always bite your tongue or urinate 😳 I’m so surprised, shocked and actually, a bit disturbed that a GP would say that and it’s really bad if they actually believe that. Epilepsy comes in all shapes and forms, ranging from very mild to severe. I would not want to see this GP again to be honest, based purely on that remark and if you say you are losing confidence, I’m not surprised. I think he should even be reported, as he sounds quite dangerous if he’s giving info out like that.
I’m not suggesting you do have it, just that this GP was extremely wrong in his ideas of what epilepsy is. It may be that it might be worth referring you to a neurologist, but if you try somehow to get to A&E as others have suggested, when you next feel like this ( or can you take a selfie video of it perhaps?) it would be better.
I hope you get to the bottom of this and hope you aren’t seeing that same GP again for your edoxoban review…
P,S I’m also another one annoyed that he said ‘anxiety’….makes me mad 😠
Anxiety and such symptoms are very real, so don't immediately dismiss it. I know I have suffered from it all my life. I would have thought he would have offered you some medication with that diagnosis, it does help. In my case a psychologist did not help at all!
This is really annoying! Your GP can't rule out epilepsy in that fashion, only an EEG can say one way or the other.
The first time I went to my GP, a few weeks into my heart constantly hammering 24/7 like Animal from the Muppets was doing a drum roll inside my chest (I waited a long time thinking it would go back to normal 🤔), I saw a registrar who was very diligant.
He spent ages going through everything with me and wanted to refer me to a cardiologist, so he asked a senior doctor if it was the right thing to do.
She came into the room and began telling me that because I'm slim I was noticing my heartbeat, focussing on it and imagining it was racing. Basically she spoke down to me like I was wasting their time.
She said my 24 hour ECG from a year earlier hadn't picked up anything so I was probably anxious and should stop worrying.
I said my heart is racing now, and she triumphantly arranged an immediate ECG to show me I was wrong.
She didn't apologise when she had the results but her attitude changed.
I see a different GP in the practice who is excellent, and it shows how attitudes can have a huge effect on our treatment.
You should refuse appointments with that GP and see someone else.
Yes, and it was fobbed off as anxiety too. Butterfly is likely on the money with conversion pauses as my EP said something similar. Though QT syndrome also mentioned. Originally I thought I had POTs but it’s the arrhythmia with the added complication of shakes caused by I believe very fast heart rate (over 200bpm) hence I had turns/fainted. Flecainide and Bisoprosolol combo helped. After my ablation things improved but sadly a year later my shakes have returned along with pauses. Get a referral to a cardiac electrophysiologist and suggest they insert a loop monitor or similar as you need longterm monitoring to really diagnose what’s going on. Sending you a HUGE virtual hug as these symptoms are bloody awful to put up with!!!
sounds like syncope brought on by your heart pausing on conversation to NSR. This was happening bro me and I had to have a pacemaker implanted. That was a year ago and no more problems since.
Yes, but not exactly the same. I have paroxysmal AF which always begins in the middle of the night and self-reverts. I began meds (Sotalol & Pradaxa) in the middle of 2019. I am now 84, a female, living in Australia. I began having conversion pauses in 2020, but a few weeks ago I had an episode that was more than twice as long as I have ever had - 31 hours. The AF reverted with a conversion pause, but as I regained consciousness my arms & body were shaking violently. It scared me - and I am now very apprehensive about what will happen when I next have an episode. I will be seeing my GP next week to get a referral to an EP I have seen once before. The EP will probably suggest a pacemaker.
It is very understandable to be anxious, I hope you get appropriate investigations, proper diagnosis and treatment!! What you have experienced is scary to say the least!
Personally I haven't had the shakes, nor ever passed out but I recognise the other symptoms as a conversion pause. And what your GP is failing to note is that afterwards you're always in NSR. Long conversion pauses can be dangerous because the heart stops. Don't be fobbed off the the anxiety card - he's just looking at one of the symptoms- the shaking- he needs to look at them all. From what I've learned on this forum a pacemaker might be your next step.
The "shakes" are sometimes called "riggers", I believe. An elderly fried with permanent AF has these on occasion, although he doesn't connect them with his AF himself. He has also lost consciousness a few times and this has been put don to low blood pressure.
He puts his occasional rigors down to a liver problem which is inherited and he has them mostly when he has an infection (last were when he had covid). His doctor is not convinced of the liver link.
Before I was finally diagnosed I had fainted etc but I wasn’t finally diagnosed until I did something I wouldn’t have done had I known I had a heart problem (a visit to Bath spa with my daughter on her birthday). That was over 5 years ago. I’m now 80 and managed quite an active day yesterday celebrating our 40th anniversary including participating in a health study, a walk in a local park in the sunshine and tea at our sons place with the grandsons! I am on Flecainide (100mg x2) and haven’t had an episode for well over a year now but we are all different. Hope you find what works for you.
so annoying. I was actively in afib and diagnosed with it by cardiologist in the hospital when hospitalist (like a generalized floor dr) came in and told me it was just anxiety and not to worry about the pandemic. What?! I almost said something, then told myself - he’s not your dr and isn’t going to be your dr. Cardiologist was not happy that happened. I did get that pause and like a lightning bolt of dizziness at times. I’ve since had two ablations and doing well on 180mg Diltiazem daily. Good luck!
I do hope you get your "fainting and shakes" appropriately addressed, but I cannot help as I have no experience of this myself.
However, I'm hoping you won't mind if I ask about something else you mentioned in passing, as this is of personal concern to me.
You wrote "I was diagnosed with afib in 2021 and also had a stroke caused by a brain bleed", but I couldn't work out the timing of these events. Were these 2 events (the AF and the brain bleed) related or independent? Were you taking edoxaban before/during your brain bleed, or only afterwards? Did you ever get an explanation for your brain bleed/stroke? ... an accident? spontaneous? or AF induced? How did the brain bleed and stroke get medically resolved, and what were the longer term consequences of this brain bleed and stroke for you?
I'm sure most AF Forum members are concerned about these matters of brain bleeds and strokes, but I will respect your decision whether to reply to my queries in this public Forum. There's always the PM option if you want to keep your answers to me more private. Thanks for reading.
The AF diagnosis came first and was prescribed Apixaban and diuretics, my lungs were 95% full of liquid so short of breath. The stroke was only a small brain bleed but in a bad place. I didn't realise for a couple of days that it was a stroke. Face and speech were ok. I was just pulling myself around the house feeling rather off. Then I was in hospital and rehab for about 6/7 weeks altogether. The actual cause never explained.
In the long term my mobility has been compromised, my left leg and foot not fully normal and I use a rollator to go for walks when I feel up to it. I think my brain is ok. They did a sort of mental test in hospital and i got full marks, so not gaga (yet). I have had to give up driving which is restricting obviously.
I must admit I am surprised to still have DOACs after a bleed but hope the cardiologist who prescribed them knows what he was doing.. I was changed to Edoxaban for financial reasons by my present medical practice. ( I moved areas 18 months ago).
Thanks for your helpful answers. I also had unexplained brain bleeds in late 2016, several years before AF intervened , and chronic bilateral subdural haematomas was my diagnosis, which fortunately had stopped by the time symptoms (intermittent left hand paralysis) had occurred and I needed a scan in A&E. Treatment for me was conservative and only involved 10 days of steroids (horrible!) to suppress my immune system, but the images of deep blood pooled across both hemispheres of my brain will remain with me forever.
But your bleed seemed much deeper in the brain, as you say, a "bad bleed" (perhaps meaning inaccessible). Being anticoagulated at the time, do you remember if the apixaban reversal agent was used intravenously when you entered hospital? or perhaps it wasn't and they adopted a "wait and see" approach after stopping apixaban? Or something else?
My reading suggests restarting apixaban, or edoxaban, several weeks after a stroke is the standard practice, so no worries there.
As for me, I haven't yet started my prescribed apixaban, but that's a personal choice and may change.
Re the reasons for these spontaneous (ie. unexplained) bleeds, the neurosurgeons I saw didn't know either, perhaps a congenital blood vessel weakness, or persistent high BP, or even "straining on the toilet!".
If it actually is the latter, I'm "home free" if I can avoid toilets for the rest of my life.🤔🤣
I do sympathise with your plight as I had the "riggers" as one member has described. Mine followed profuse sweating and lasted about 3-4 hours. I did have a UTI at the time but have had them when no infection. This was prior to being diagnosed (at the moment questionable misdiagnosis) with AFib. They also only happened at night. When they had abated, I was left exhausted. No one seemed to be too bothered about them, but it's an extremely unpleasant experience. Good luck with finding a solution.
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