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Successful Cardioversion, but also Horror

After several months of being in constant AF, I had a successful cardioversion last Tuesday. The team who carried it out at my local hospital were absolutely fantastic and seemed to be having a lot of fun, so I just joined in as expected. My heart rate is now 62. Get the flags out!

However, I never want to repeat the last week or so. The week before the procedure a horrible looking spot appeared on my 2in thigh scar where I'd had quite a deep skin cancer removed last July. I was convinced it had come back and you know when you have your darkest times the most ridiculous things come into your mind, like am I going to eventually lose my leg! Well that was me!

I must say my local hospital were very good and had me in to see them within days of me calling. I could have cried when they said it was an infection, this was later confirmed after a swab.

In the lead up to having all my worries solved and when I was at my most stressed I had the absolute horror of an hallucination in my bedroom at night. A nun stood by my bed and then leaned down towards me. She had a pleasant face, but in my absolute terror I shakily said 'go away' and she did. This meant every night I was terrified to go to sleep. I tell you, it's a wonder I wasn't certified as mad and locked away that week! Looking at my pills afterwards two have the side effects of hallucinations, one being Flecainide and the other Zopiclone. I think the combination of them and stress caused the hallucination. When I told my AF nurse what had happened, I asked if she'd ever experienced anything like that and her immediate answer was, yes just once.

Has anyone else ever experienced anything like this?

Jean

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First of all - it’s great that you are in NSR again. Long may it last.

Old wives here say that trouble comes in threes but it’s more likely that your second trauma was enough to help trigger the hallucination. It’s so human to see the absolute worst - but the relief of ‘only’ having an infection must be massive.

I take Flecainide and I’ve never had a traumatic vision as you did but it’s interesting that you banished it by telling it to go away, rather than panicking as many of us would have. How horrible our minds can be and of course the presence of the hallucination hangs around - even recurring dreams have driven me nuts.

It’s all behind you now and I hope you enjoy your lovely NSR and the infection is very minor. xx

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Thank you Finvola. Yes, we also have the saying, 'things always come in threes'.

The reason I told it to go away was my old aunt always claimed to see people and when we showed horror at her telling us this, she would say the dead can't hurt you and if you don't want them just tell them to go away. I never forgot that!

I'm still a little nervous about going to bed, but as the days go by (8 now) it get's easier and I'm sure it was the combination of the two drugs and stress.

Being in NSR is just wonderful. This time I won't be climbing any hills for a while and giving AF the conditions to return as it did last cardioversion, which was just over two years ago.

Jean

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Jean, probably just your guardian angel calling in on you .... just checkin' as it were. Once she got a reaction she knew it was OK to go.😇

Glad all is well.

John

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That's a nice thought John and I certainly hope that was the case. Just really don't want it to happen again, as I'm just not brave enough to cope with it.

Jean

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Jean l would just like to say how sorry to learn what you have been going through recently but all in the past now thank goodness...You must have been very scared anyone would...

Following my Ablation 3 yrs ago there were two senior Nurses attending to me at either side of the bed...I was now back on the ward and not in the recovery room...At the bottom of the bed stood a tall bespectcled gentleman with a tweed jacket on ...As he was just stood there staring l asked the nurses who he was they said ' who do you mean" I said this Gentleman they went white and said 'There's no one else here' at that moment he looked at me and nodded and said ' l am going now' and then just disappeared...

The Nurses who were not young were spooked and said in all there years of nursing this had not happened before and they had never seen an apparition either...

A bit of a long winded story but true...

Maybe it was the Anaesthetic...

Not the Nun but something similar..

Keep well,

Carol..

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Thank you for your reply Carol. I know it sounds strange, but I'm relieved to hear that someone else has experienced something similar. It's comforting to know I'm not alone. Thank you for sharing what happened to you.

It was quite a big step for me to admit what I'd seen and I wondered if people would think I was a bit 'odd'. The mind is such a strange thing, so much more to it than what we know!

Jean

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Jean what surprised me was the Nurses reaction as obviously faced with death in there job were scared and got goose bumps...

Glad you feeling better now.

A secret shared is a secret halved or something the other.

Carol..

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You don’t sound in the least odd; I think that airing this concern was a sensible thing to do rather than bottling it up. To repeat my earlier suggestion: I think you should mention it to your GP not because it is of any great significance , but so that he can set your mind at rest. He could

also advise on dealing with future anxiety at nighttime.

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In truth I've never been an anxious person. I'm a great believer in whatever will be, will be, and that worrying is a waste of time and won't change anything. Knock me down and I'll get up without crying and decide the best way forward. However, I have to say that stress has crept into my life recently, whereas I used to happily drive long distances I now hate it if driving in a strange place and yes get stressed.

My GP knows me well and dismissed the hallucination when I said about it.

Guess I'll survive.

Jean

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Know what you mean about the driving. I used to drive all over the country for work. Now I even work out the safest route to the shops!!

Keep safe.

Di

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GPs are cautious. If he thought it was anything likely to be serious he would have referred you. If you are still anxious it would be best to go back to the GP, not to further discuss the event, but to get some help with the anxiety quickly rather than wait for it to get a grip on you.

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Can you bottle some of your anti-anxiety potion and ship it to me in Georgia? I'll pay well!!

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Caromia,

Ditto to you as per my comment to Jean on guardian angels.

John

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John that's how I interpreted it too...

So pleased he said ' I am going now' and not ' come with me.

Carol...

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Now that made me laugh Carol .... I'd share your pleasure too :-) :-) if that were me.

Actually many years ago I met mine during a period of crisis. It was a he, incredibly tall, incredibly thin, incredibly stooped/hunched with a long flowing gown, a bit like we imagine Camelots Merlin, but with an unbelievably pure, timeless face. An awesome experience for me.

john

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We all are supposed to be assigned with our guardian angel or angels at birth but not everyone has the good fortune to meet them..

I have collected enough white feathers during my lifetime to fill a king size duvet...

Yes it's the intensity of the facial expression that lingers on - genuine concern...

Carol.

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I have not met mine as yet, but his name is Eric. He is very accommodating as I once lent him to a friend who was suffering badly from OCD and had been sectioned twice after trying to commit suicide. She now works in a hospice!

Di

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Sounds like he was a reassuring presence. Maybe your angel-or higher...

The only 'person' I ever saw was my father when I was in my teens. He died when I was 12 and a few years later I was going through some difficult times emotionally.

One night I woke for no specific reason and saw him in a corner of my room. I was startled and felt fear. He faded right away. The next day (in daylight) I felt like my fear had caused him to leave and was sorry he didn't stay longer. Since then I wished he would return but he never did. I've never seen anyone I've missed but often hoped I would.

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So glad your cardoversion worked Jean and that you are back in NSR. Nothing like the feeling when you wake up after being in AF for so long and that normal rhythm has returned. Euphoria is not a strong enough word.

I can understand the scare you had with the scar good news that it was not bad news.

Regarding the Nun..... I can understand how scary that must have been for you. Hopefully it was just a hallucination but if not she went away when you told her to. At least she didn’t sing “The lonely goatherd” yodel ey he.

Take care and I hope your pesky heart behaves itself now.

Pete

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Thank you Pete, yes being back in sinus rhythm is the most wonderful feeling! I try to keep the fear of AF coming back out of my mind, just in case it thinks I'm missing it. Lol.

This time my heart has been a little sore afterwards if I walk anywhere, but I guess the cardioversion shock to the heart must strain it a little. Haven't really been far yet, just around the block a few times which is only a 5-10 min walk, but each time about half way round my heart soreness starts.

Hope you are keeping well after all your ablations.

Jean

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Yes your chest can be a bit sore after a cardioversion I know. Just take it easy for a few days.

Regarding me, I seem to be very stable and just have Ectopics (not every day) and I am very breathless when I do anything physical.

Pete

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Annoying about the breathlessness, have they said why you have that?

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I was told that it was probably because my heart had thickened after all these years of AF coupled with my bad conduction.

However I had an Echocardiogram done in December and my EP said that although my Atrium is dilated there is little evidence of hypertrophy. He said the scan was very reassuring.

I think my main problem is that I have over the years become far too aware of my symptoms.

Anyway more unrelated problems to deal with tomorrow as this week we have to take my very elderly mother in law to hospital as she is very unwell and they intend to do a hystroscopy to investigate some very worrying things that are happening.

She has no short term memory, everything has to be repeated and because she is so scared she is dreaming up all sorts if lies to avoid it. It is not doing my blood pressure problems any good.

All in a day in a life.

Pete

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Aah, poor mum. Hope it's not as bad as you're expecting and remember you may well be the same as her memory wise when you get to that age.

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I know it is very sad.

Must admit my short term memory is not whst it was anymore.

I have a friend who nursed his wife with dementia for 11 years until she died in 2017.

Pete

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Why did it take them so long to do a cardioversion?

Pete

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I didn't mention it as I kept hoping it would go back into sinus rhythm on it's own, as it has in the past.

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Jean we have had conversations about this sort of thing before I know. I err towards Carneuny's thoughts as I think you may have guessed. There is far more in this world than we understand.

Glad things are on the up again. PM me if you need to rant anytime.

Bx

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Thank you Bob, you may regret offering a listening ear.

I would like to think it was my guardian angel and if she hadn't bent down towards me, I may just have had the courage to ask what she wanted. I won't say next time I will, because I don't want another time like that, just too scared to cope with it.

Jean

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Hi Jean, sorry to hear about the scary part of this adventure, but glad to hear that you are feeling better. NSR is a wonderful thing, isn't it?

Here's my experience with Flecainide.

After a stint using it as PIP, my cardiologist wanted me to take it every day. That lasted 2 days, as I had a terrifying hallucination on the 2nd day. I later tried taking it every day at a smaller dose. Same thing.

On 3 different occasions, I had versions of that kind of hallucination. I brought it up to my now former cardiologist, who told me that "nightmares" can be caused by stress, but maybe it was due to the Flecainide. He had a pattern of being rather condescending in response to my concerns.

I pointed out that I'm well aware of the difference between a nightmare and a hallucination. I'd experienced a similar, though much milder, side effect from a different medication 5 years ago. Once I stopped taking the medication, the hallucinations stopped.

Same thing with Flecainide.

It is well documented that hallucinations are a side effect of Flecainide. If you Google "Flecainide hallucinations" you can see research studies.

I mentioned in another post that I have a neighbor who's a pharmaceutical chemist who's working on creating new heart medications. I had a chat with his friend who's in the same field and is focusing on arrhythmias.

I recall mentioning that I was having hallucinations on Flecainide and the neighbor didn't skip a beat in saying, "Oh yes, the effect on the nervous system."

Here's another aspect of the situation.

Some of us are built with a highly sensitive nervous system and so are more susceptible to side effects from medications. It is not a matter of it being "in your head," or, you think about it too much, you read about side effects too much, so you somehow cause it. Nope. That is simply not true with those of us who have a highly sensitive nervous system. There's more to be said about that; feel free to PM me if you'd like.

It is a physiological response. People are built differently. It's hard for people who are not built this way to understand what it's like. For that reason, it can be easy for them to dismiss this kind of experience. This is common among Western docs, but not among acupuncturist, homeopaths, craniosacral therapists, etc., who understand this kind of sensitivity and work with it.

Flecainide is a very powerful medication.

I decided to see what I could do to support my heart so as to avoid having to take it.

I did a lot of research, discovered Metabolic Cardiology (highly recommend the book), and some related helpful resources from afibbers.org, another AF forum. For almost a month, I've been researching by experimenting with dosages of Heart Calm. vitalbiologics.com/products...

I've had an ongoing email conversation with the founder of the company, who does customer support, and has been generous in answering my questions, though appropriately deferring to my docs on certain questions. He strikes me as thoughtful, intelligent, and reasonable; not a snake oil salesman out to get rich. He had palpitations years ago, was unsatisfied with his doctor's response, did loads of research, and in 2014, started his company, which makes special supplements designed to support those of us with AF. How's that for taking matters into one's own hands??

The supplement has low doses of magnesium, potassium (only 2% of daily rec), CoQ10, and Taurine.

My simplified explanation of how this is working is that the biochemistry of the heart cells gets really messed up by AF. It's like driving the car with little gas in the engine. Getting the right amount of these micronutrients nourishes the heart cells and allows the metabolic processes to function properly again.

The medications, while stopping symptoms, also tend to impact the metabolic processes.

I have been pleased and actually rather amazed by the results of taking Heart Calm so far.

Overall, it feels like there is gas in the engine (that's the CoQ10). I feel energized, yet calm (that's the Taurine). The anxiety lifted. I can think clearly and sleep well again. My mood has improved.

The capsules are designed to be easy to open so that you can customize your dose, so now if I feel that jittery feeling in my heart that has often preceded an episode, I take a quick hit (1/4 or 1/2 a capsule) in addition to my regular doses, and I'm good. Now when I sense that jittery, weak feeling in my heart, almost like a "hunger pang," I understand it now to mean that my heart needs a boost.

This is the upside of being highly sensitive. The medications can be overpowering, but much lower doses of what's good for me tend to have a far more powerful good effect.

Early on, when the recommended dose was too much for me, I'd have insomnia, which would trigger AF. The CoQ10 provides energy to the cells, and again, being highly sensitive, I need a dose that's much smaller than the recommended amount. This I had to learn by trial and error. But even then, it's been interesting to note that the episodes are much milder and shorter. I have a sense that my heart is getting stronger. I had never experienced my heart converting itself back to NSR like it has from those short recent episodes.

So that's my experience so far. Still tweaking, recording it all, researching, but so far, so good.

It's not in your head, Jean.

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What a fantastic post. I'm taking magnesium taurate but not sure if it's making things worse.

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Nella, I think your responses to me are so full of helpful information that you may need to make your own post with them, so that others read and benefit from what you have learnt.

Best wishes

Jean

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You know, Jean, as I was writing the posts, I thought that might be a good idea. I still get confused by the logistics of the posts and replies; if I want to go back to an earlier conversation and say something, I'm not sure if it stays buried or not.

I actually didn't intend to say so much at the outset, but one thing led to another! 😂

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And I believe many of us are more in tune with the 'other side'. When we mention our experiences it often makes doctors, scientists, and more 'dense'** people nervous and sceptical.

** By 'dense' I don't mean thick or stupid-just some people are more earthbound than others-just my experience and my opinion.

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Yes, I agree, irina. A big part of the AF adventure for me has been dealing with what you describe. I debated whether or not I even wanted to say anything along those lines, but then decided to because what I've learned has helped me so much. If I can help others, then I'd like to do that and save them some of the anguish I went through.

When you really dig into AF, it clearly affects people in many different ways. The medications affect people in many different ways.

So it makes absolutely no sense to me that docs and others stick to a "one-size-fits-all" approach to the condition. I imagine it's expedient to just treat everyone the same. For some docs, my sense is it's an ego thing. Why dismiss someone else's experience just cause you haven't had the exact same experience? I just don't get that.

If I had not chosen to speak up about my experience with medications and to move on from docs who would not take my concerns seriously, I'd really be in a mess.

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I'm happy you brought it up. I know I'm reticent to talk about things like this with 'just anybody'. I try to learn to be in touch with my spiritual side more and more as I get older.

I think I have a hard time here in senior living partially because I am very much a loner and would rather spend time alone with my own pursuits than sitting in the lobby with the gossipmongers. I'm perceived here by many as strange or eccentric. Fine with me.

A good friend here is an ex catholic nun. Boy do we have some good conversations. lol

I feel stressed when I get caught up with other residents' conversations-what they bought while shopping, what they ate at the restaurant. And usually end up excusing myself and going to my own apartment for restful downtime.

Nothing wrong with these topics. They just don't interest me.

By the way I haven't been on any cardiac meds since my Pace and Ablate in 2016. And I take very few other meds. Mostly I take supplements.

I was raised Catholic and I had a Jewish stepfather for a time. My senior living community is run by the Jewish Federation of Atlanta. I've looked into other religions and now refer to my religious belief as "Spiritual." Buddhism resonates with me. Mostly after leaving the Catholic Church a huge light bulb moment for me has been realizing I can interact with God 1 to 1 without the help of self-appointed middlemen here on earth.

Namaste.

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Very interesting, irina! Let's PM about these things. Lots to talk about!

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Done.

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I just re-read this and the Metabolic Cardiology, Heart Calm, and the fact there are those of us who are very sensitive to all meds.

Fortunately my PCP and EP agree and understand this is just how some of us came off the assembly line. I do all I can to find alternatives to meds when possible especially newer ones which seem to have so many side effects that are almost worse than the illness they treat.

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Thank you for your post - i have found it really interesting & helpful. Af can in some ways be life changing so sharing our anxieties and related concerns on this site is very useful

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I've never had nuns in my room, but often night terrors on certain drugs, usually restarting Bisoprolol/Dronedrone and/or Amytryptaline have all made me dread going to sleep.

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What are night terrors, the same as hallucinations?

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Woke myself up shouting numerous times or had such disturbing dreams about family and death or tragic circumstance I've woke up and cried my eyes out.

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The horrifying part to the Flec hallucinations I had was that they came with an intense feeling that I was about to die. Split second wide awake, seeing the shadowy apparition next to my bed, with the knowledge that this is it! I'm about to die.

Never in my life experienced anything like that except when on Flec.

Really not so mysterious!!

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That sounds an awful experience too Jed. I know someone else who has that and it sounds horrible.

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A little wicked humor.

I have had nuns in my room but that was in nursing school.

They were bedchecking to see if any of us had stayed out all night with our dates!

I did and got caught a few times.😈

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Wow, Nella, fascinating information in your post. I can certainly agree with you that some of us are more sensitive to drugs than other people and am sure I'm one of them!

It always amazes me how some people believe every word a doctor tells them and are willing to continue taking pills that aren't helping their AF. When I told my AF nurse about the hallucination of the nun, she looked at the list of pills I take and commented that the Flecainide dose was a high one 2 x 100mg per day, but said to carry on taking it until I go back and see them in a month. I wonder how I can need the same dose of drug when my heart has returned to normal rhythm!

I'll be interested to hear how you progress, let's hope you've hit on a cure for we fellow AF sufferers.

I'll have a look at the websites you mention.

Thank you

Jean

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Glad you found it helpful, Jean!

More related resources for you and others who may be interested:

Dr. Stephen Sinatra wrote Metabolic Cardiology. Here's his site: heartmdinstitute.com/

There are also YouTube videos of his talks. He explains the practical reasons within the cardiology world why more docs don't promote a metabolic approach before going to ablation or the powerful drugs.

It all really makes a lot of sense to me. At the end of the day, it's the results that are most important and there have definitely been good results so far. Always one day at a time with AF, but grateful for every good night's sleep!

For the first time in 2 years, this week I got good sleep before getting up to drive to my college class for the first day of the semester, taught a 3-hr class to 30 students, felt good the entire time, enjoyed myself, and had energy when I got home. It felt miraculous to me. No AF. I felt like a normal human being, like myself.

More resources....

afibbers.org is an American AF forum. I was initially put off by the bizarre welcome I experienced when I introduced myself, but followed my intuition several weeks ago to dig into their resources. There are several people on that forum who have done extensive research into various ways to eliminate AF without having to have an ablation and they have graciously documented much of it. Others go the ablation route and there is much support for going to Dr. Natale, the "rock star" of ablations, as he's known here.

On this resource page, I found the 12-Step Plan to Eliminate AF to be quite helpful. I'd made my way through most of it by the time I read it, but putting the focus on micronutrients and seeing how that goes sparked my curiosity. Also, I learned about Heart Calm from that forum a while ago and had even taken it for a bit. But this time, I've cleared away other supplements and herbs that might interfere.

afibbers.org/resources/inde...

About being highly sensitive....the work of Dr. Elaine Aron has been a lifesaver for me. She's a psychologist who studies high sensitivity and has written several books on the trait. I've known about her work for many years. I was fortunate to be able to meet her at a talk she did in December; it was actually part of the filming of the new movie she's making on high sensitivity. That was fun!

I wouldn't be surprised if there a lots of "HSP"s in the world of folks who have AF. HSP is the shorthand for "highly sensitive person."

Here's her site, which includes a self-test: hsperson.com/

There's also info on the site on the documentary she produced on the trait of high sensitivity: Sensitive - The Untold Story. This is helpful to watch to get an overview of the research various psychologists have done and to understand what it means to have this trait.

In relation to AF, what struck me in her recent talk was that she said that HSPs tend to be more susceptible to side effects from medications, as I mentioned earlier. Till then, out of habit I had been forcing myself to stick with docs who were insensitive & didn't get me. I was so used to doing that kind of thing. She said that if docs don't start out showing empathy, compassion, kindness, warmth, it's best to get out quick. We are affected more by the lack of those qualities in a doc than most folks. That's certainly been my experience.

Years ago, when I first met my dear homeopath, who used to teach women how to fix cars (for real!), she was helping me to understand that I'm actually built differently, that my nervous system is pitched differently. She said, "Most people are built like a Ford pickup. You? You're built like a Lamborghini!" 😂 . In terms of the inner workings, this had made sense to me over the years.

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This reasonates so much with me. Thanks, Nella, for the sources.

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Oh you poor thing! First of all.Hope the leg is improving . I too get nightmares which I never have had side a recurring one about wolves as a child. I can only put it down to flecanide. Very vivid and scary scenarios,one where I was hanging out of a window high up.....being chased by a man with a knife....! I don't get them very often and noticed I've been unwell when I do..had a septic finger...had food poisoning ...w wonder if connected with your leg? Best wishes xxx

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Thank you.

That's an interesting idea re infection being the cause, because the dermatologist asked if the infection in my leg had made me feel ill. I told her about the nun appearing and she asked me if I'd told anyone about it! I guess she was wondering whether she should report this unbalanced woman! Lol. I hastily told her that I had told my AF nurse and that she had experienced the same thing.

Jean

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Also,I remembered when my dad had a water infection after one of his strokes,he was ' off his face' as they say and bad-dreaming a lot.....he was on warfarin and various medications too.

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Yes, for many years I used to help run a nursing home and water infections in the elderly can certainly disrupt the mind. It's quite often the reason old ladies are found out in the street in their nighties. Some people may find that funny, but I feel sadness for them.

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No nor me,there but for the grace of God......

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Hi and so sorry to hear what a scarey time you have had.

I have seen images that look like characters whilst I have been on flecanide. They are not lifesize and if I open my eyes when I close them again the image is gone. Flecanide does definitely affect my eyes though in a few different ways and I have been told by my optician that it actually not my eyes but actually the brain . It is something to do with the way flecanide affects the nerves taking signals from one to the other or so I have been told.

However like Bob I prefer the guardian angel theory. There are definitely more things in heaven and earth than we will ever know.

Sending peaceful thoughts x

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Thanks for your concern and kind thoughts dedeottie.

If she was my guardian angel, my terror at her appearance made me very abrupt to her. She was as clear to me as any human would be, though goodness knows how I could see that in a darkened room! I wondered afterwards whether my eyes were even open!

Jean

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Maybe the nervous system theories are provided by people that don't believe in guardian angels, hsp's, empaths and others who are wired differently.

Maybe one day science will accept that some of us who have been given mental diagnosis just have a 'normal'-usually very high functioning brain-that works differently.

I was diagnosed in 2005 (late) with ADD. It explained a lot of problems I had growing up in our traditional school system. I read a book about ADD ("ADD: A Different Perspective" by Thom Hartmann.) He made me look at ADD less like a problem and more like a creative gift.

I finally decided I just think outside the box and many people can't deal with this.

I don't even know where the box is.

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You have helped so many on this forum and it’s great to see that so many want to support you now, when you need a bit of help......Since I have had AF, I have had occasional vivid dreams but none have been unpleasant nor has there been any hallucinations. I’m sure that if things continue to improve, as they will, the stress of recent months will subside and life will get back to normal......whatever normal might be!!....👍

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Thank you Flapjack, yes I've had a lot of supportive responses from the lovely forum members here.

As each day comes I grow less afraid of seeing something else, but the fear is still there. Each night I pray for it not to happen again. Some people can perhaps cope with this sort of thing, but I can't. My daughter told me to go and sleep at her house, but I knew I had to stay in mine where I've lived for 38 years.

Hope you are still keeping well.

Jean

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It’s quite common to experience this sort of thing when you are on the threshold of sleep or waking, particularly after a lot of stress (they are called hypnopompic or hypnagogic hallucinations and are harmless). So my question would be: where you on the threshold of sleep at this point? Alternatively, , , as you say, could have been a side effect of the medication. For the sake of peace of mind I would speak to your GP who should be able to set your mind at rest and offer some suggestions to avoid future anxiety.

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Thank you Sam

Yes, I'm aware that this sort of thing can happen when falling asleep and know some people see spiders on the bed. Think I'd rather see people than them! It was just so absolutely clear, terrifying and as I've said earlier if she hadn't bent down towards me I may have coped better.

I did speak to my GP, he knows me well, and he asked if I could have had a high temperature then totally dismissed it. I know hallucinations are the side effects of two pills I take and think it must have been them and stress.

Jean

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You've been so supportive of me and I am so happy you're doing so well.

Take care. irina

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All my best wishes but which would you rather have leaning over you , a respectable nun or a dodgy devil?

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Yes, I'd much rather that kindly looking nun than something devilish. If only she hadn't leaned down towards me, I would have been braver - I think!

Thank you for your best wishes.

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Yikes, that was a scary event. My daughter (28 yrs old) experiences night terrors when she is tired and stressed. She often reports a person by her bed. Like you she is freaked and scared for days afterwards.

It’s great that your in NSR now, so I’m wondering can you stop flecanide or at least reduce it!? My cardiologist prescribed 100mg flecanide 2d, but I had some scary rhythm problems, and felt generally ‘weird’ on it. I stopped it for a week and restarted with 25mg 2d. So far so good. Instead of daily a.fib, I now have at least a couple of days a.fib free. I am very symptomatic so I would feel it. Of course cardiologists know what they’re doing, but my opinion is, I know my body best, and without being silly about it I am trying to fight this beast with minimum chemical drugs and lots of good food (zero alcohol, spices or processed food), whilst waiting for an ablation.

Could you share how your ablation went for you, ie were you asleep etc.

Very best wishes for restful healing sleep 🌸☘️

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Thank you for your kind words Cara.

I totally feel for your daughter if, as you say, she has experienced the same thing as me. Tell her I am here and understand, should she feel the need to talk to someone.

My AF nurse has talked about me reducing my Flecainide if I'm still in sinus rhythm after a month has passed, I just hope she remembers that when I see her then.

Like you, I dislike taking any prescribed medication, in fact I sometimes wonder if these pills we're prescribed do more harm than good! If I had my chance again I would change my diet and only eat natural foods to see if that helped first, before considering the ablation route.

Unfortunately, when I had my first ablation, I was under the impression that it was going to cure me totally of AF. That wasn't the case and it made my AF worse, the second one didn't help either, but I do believe that the third reduced the severity of my attacks. I had two ablations with sedation and the last one was with a general anaesthetic and I far preferred that one.

Jean

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You must remind your nurse.😉☘️

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Very interesting post Jean. I was considering asking my EP about Flecainide after being taken off Sotalol and put on Bisoprolol. I have a very irregular heart beat when I get anxiety since the bisoprolol and now wish I was still on sotalol, but many on here have said they take Bis and Flec together. I'm a bit apprehensive now. Glad you are feeling better.

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Thank you for your response Champ.

I have to say that I found Flecainide to be the only drug that really helped calm my AF. I take it alongside a small dose of the beta blocker Metoprolol.

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Like you i also had a lot of ectopics + anxiety issues when i was on (1.25 bisoporol twice a day)

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Gowers, I have since been taken off Bisoprolol and put back on Sotalol. My anxiety and tremors have gone and I feel almost back to my old self and getting better every day, thank God. Hope you are well.

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Yes I went through a phase of having terrible nightmares. So much so nearly every morning my husband would say in that sort of voice husbands can use “oookkkk what was the dream about last night?” They do seem to have eased off recently so I don’t know what caused them. All I know I am tired, but like you I dread sometimes going to bed, not for the dreams/nightmares, but because if that dreadful loud thumping of my heart in my chest and head and the wait for it to go potty. Pleasant dreams and hope you feel better.

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Thank you Tapanac, hearing how you have such awful dreams has made me realise that what happened to me is nowhere near as bad.

I understand well, that thumping of the heart you talk about. Are you on medication and if so what? Flecainide is the only drug that has really worked for me.

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Hi jeanjeannie50

I was just on bisoprolol and losartan (except for furosemide and my thyroid tablets) but after my cardioversion and before the ablation, (the ablation which I was told was a success, but my heart has yet to believe it) I was put on Fleccainide as well which I found brilliant and from Christmas before last until the ablation in March I felt great and almost normal.

Then I had the ablation and was kept on Fleccainide until July when I was told to wean off of them. Since then i’ve had lots of palpitations, ectopic beats etc. I was told to wean off bisoprolol by st George’s. Then on Boxing Day I was taken into hospital with the afib back through a flu virus and constant coughing spasms. From that emergency hospital visit which was St. Peter’s they told me to go back on bisoprolol and to wean off losartan. It’s all been so confusing.

Now next week I have to have another 7 day heart monitor.

I have to say with all this although my chest feels worse, the nightmares have abated! I think I would rather have the nightmares.

After all that, sounds a bit muddled sorry, I do hope you feel better

Best wishes

Pat

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Glad your back in sinus Jean, what a relief. Long may it last. I have had some really heavy dreams with zopiclone, I don’t take it regularly only when I have had a few bad nights and desperate for some sleep. Same with Diazepam. Maybe try leaving a light on at night for a while. Best wishes.

Brenda

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Hi Brenda, thank you for your kind words.

Yes I did wonder about keeping a light on at night. For the moment I'm just putting the event down to stress and the side effects of medication. My stress has gone now and hopefully, if my heart stays in rhythm, my medication can be reduced at some stage.

I only take Zopiclone when it gets to about 2am and I'm still awake, they are the lowest strength and a pack lasts me for months.

Are you keeping well now?

Jean

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I find Zopicline really helpful when af has left me exhausted and anxious - are you on any af medications? Also, are you taking Diazepam to help with af? I didn't know if you could take Diazepam with af meds

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What an awful experience, Jean. The horrible worry about your leg and the general stress leading to the cardioversion. But the hallucination is something else. No, you are not going mad. I had a nightmare/hallucination (I don't know which as there was no accompanying dream or lead-up) a couple of years ago where I opened my eyes and a man was leaning over the bed and wearing a full-face white balaclava. I shrieked so loudly my neighbours heard. I thought my heart was going to jump out of my chest. It had such an effect on me that since, when my husband is away, I lock myself in the bedroom (with my dog) overnight. I am on bisoprolol and amlodipine.

My late father-in-law was on new drugs and during the night, whilst wide awake, had multiple hallucinations. The curtains in his bedroom were opening and closing, his glass jumped off the bedside table, he watched the crocheted mat on the dressing table slither slowly off the surface and his wardrobe doors opened and slammed shut. We saw him some hours later and he was still ashen and in tears. His GP checked and said 'ah yes the drugs' but wasn't at all concerned.

Really hope you get back to having full restful nights and no more apparitions.

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Ooh, I'd hate to experience either of the events you describe yourself and late father-in-law having. I think I'd be in tears too if I experienced either of those. At least my nun had a kind face, but she was just so real! Dr's are so complacent about the side effects of pills aren't they, it makes me cross!

In my home all my inner doors are locked at night. My house was burgled many years ago and I also had a terrifying experience where I felt my life was threatened. People say to me what if your house catches fire, how will people reach you. The answer is I don't care, they can smash the windows to get in. I need to feel safe at night.

I'm hoping for a peaceful period from now on.

Jean

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Hi Jean

You may wish to get a few external security cameras fitted. They are a far more effective deterrent especially if linked up to the internet and prices have decreased dramatically recently, As always get 3 quotes from reputable companies if you decide to go ahead.

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A good idea, thank you.

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Just read your post, Jean, and am very happy for you that the cardioversion was successful. There really is nothing to compare with going from constant AF to being in normal rhythm, it is such a wonderful feeling of relief and long may it continue for you.

So sorry though, to hear about what you went through beforehand. I hope with time you will be able to sleep without fear of any more 'visits' and are just able to enjoy having a regular heartbeat and take up life where you left off when all this started.

Very best wishes, Kate.

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Thank you for your kind response Kate. Yes, being back in normal rhythm is truly wonderful. However, I think I really deserve a period of peaceful life now.

It really was a horrible week for me and the only upside is that it has given me a better understanding of what stress is. Perhaps it was one of life's lessons that I needed to experience, who knows!

Best wishes to you.

Jean

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Hi jean. I am so glad your conversion went so smoothly and is successful.

I've had quite a few patients who have had hallucinations, night terrors etc from all kinds of drugs. They are more common than we think.

Probably doctors should mention the possibility but I believe they probably don't because they believe we might be too suggestible. But we are smarter than that.

I never had hallucinations but when I am feeling bad or in pain or facing surgery of any kind I give myself the 'what ifs'. It's usually about dying which, of course, has never happened. And it's not helpful to hear "Don't worry. Things will be fine."

If not worrying were that easy, we would stop. Duh!

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Hi Jean, yes relatively, only a few episodes last year the longest lasting 5 days. I am always aware and anxious that it can kick off anytime. Have had some thumps and bumps over the last few days which I am trying to ignore. Need to lose some weight which has always been my problem but exercise is very difficult, must get back to Aqua. Hope you now stay well, look after yourself.

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Hello, I'm 77 female, diagnosed 1 yr. ago PAF, few noticeable symptoms, on Eliquis, beta blocker, diatr??, had cardioversion a few months ago...ONLY one ZAP, sinus Rhy. lasted only few minutes, asked EL why he didn't try again, he said I was already coming out of anthes., don't want to do Ablation unless symptoms are bothersome, would consider CV again. I meditate every day (TM),also go to chiropractor, studies re: AFIB positive, considering Acupuncture....anyone try that? Comments welcome.

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Hi Drumlady

To get replies to your comment above, you need to make your question a post of your own, you've accidentally put it inside a post of mine where a lot of people won't see it. Go to More at the bottom of your post, delete it and then create your own new post.

Hope this helps and you get some replies.

Jean

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By the way, I believe there are many people who have had similar experiences but we don't hear about them as we are careful who we share this info with. Usually we are careful to share with like-minded people-who we know won't cross us off as 'out to lunch.'

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Yes, irina, that's the challenge. I'm at the point of caring less and less what others think, after the experiences of the past few months with doctors and AF. One of the good things about AF, actually. At the same time, I'm discerning about who I speak to because I just don't want to deal with the nonsense that can come up when someone gets twitchy about something I've shared that has nothing to do with them.

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Me too.

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One night, when our children were young, we were in bed asleep when my wife suddenly woke up and switched all the lights on. I woke up and asked what was happening 'A lady in grey was leaning over the bed' she said She was quite certain so I got up and looked around the house.

My eldest son was about to fall out of bed in a very awkward way. I picked him up and put him back to bed. A strange experience.

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That is strange. Thank you for sharing that story. Isn't it odd how so many people have had a similar experience to me. Because I've had the nerve to say what I saw, others on here have found the confidence to do the same. It appears the experience I had is more common than people may realise.

Jean

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Maybe the lady woke your wife up to help your son.

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I had taken zopiclone on the night I ended up in A&E reported in another post so I have abandoned them. It is not a recognised drug interaction but would suggest it best avoided.

Hope you are feeling much better now and having pleasant dreams.

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Did Zopicline cause you to go into af? Im interested as i take it on odd occasions

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It gave me a viscous headache but not AF

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Hi Jeannie :-) just read of your nasty experience, I hope you are alright now and that you stay in NSR .

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Thank you Doodle

It's made me a little nervous, but I'm fine now thanks and totally believe (want to) that it was the stress I was under, plus the tablet side effects. Still in sinus rhythm at the moment, but have been getting a little soreness in my heart if I do too much. I guess that's from the strain to the heart during the cardioversion which was exactly a week ago.

Are you keeping well?

Jean

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Hi Jeannie :-) I am ok to thank you, having a few health problems not related to AF.

Hopefully now your scare is over you can return to being calm and keep AF away :-)

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