My AF of 2 weeks is being treated with Flecainide, and with Bisoprolol and long-standing drug Felodipine for high blood pressure. My GP called me in for an aftercare appt. this coming Friday and I have ECG and 24hr monitor arranged for 3 weeks hence.
But right now I'm plain scared. The symptoms of heart leaping around is one thing, but the accompanying 'flooding/bursting' sensations in the head feel like I'm actually dying. I'm stuck in bed as every visit to the bathroom or the kitchen leaves me fighting for breath and close to passing out.
Initially I was having whole days free of symptoms in between attacks and making practical use of those times, but now it's pretty much constant. I'm a fighter having come through breast cancer and a brain haemorrhage without losing my humour, but I feel I'm alone with these horrible physical sensations and with no end in sight.
For reasons of blood loss I stopped the anticoagulants within a day as I'm told they don't treat these symptoms, and the advice that if they don't cause one type of stroke they can cause another didn't sit well with me.
It would be so helpful hearing if anyone else has experienced the powerful flooding sensations in the brain. Sorry if I'm being a wuss. Cat x
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It sounds like something isn’t right. You shouldn’t be having those weird feelings in your head and feeling like you cannot breath and like you are going to pass out. Hard to say what is making you feel so awful but I think you need to be evaluated again, maybe a trip to the emergency room?
Thank you Hoski ; I'm trying to hang on 'til Friday as hospitalisation wasn't helpful. Monitors were faulty and spent the last 2 days with no real monitoring or checks. And don't feel up to the usual 5-6 hour wait in A&E.
I once made the mistake of going into A&E as a walk-in patient with AF, never again. If you call an ambulance they will assess you on the spot and you don't have to go to hospital if you don't want to.
I’m so sorry to hear you’re so poorly. I’ve been away from the forum for a lot of the time recently. Poor you - and having to wait for everything to be done while you’re worried can’t be helping.
As you k ow - I’ve had quite severe ‘brain shake’ and very odd physical sensations which no neurologist seeemd particularly concerned about. They all put it down to nerve damage. I’m not sure if my ‘flooding’ sensation is anything like yours Cat. It usually starts just about central to the top of my head - and feels like a flood of cold water or a jug of cold water being poured on to the central spot on the very top of my head. It’s weird and very disturbing. My brain shake feels more like ‘crinkles’ at the minute - the shake sensation which used to last for ages now happens just as frequently but is for less time and is sometimes more like a crinkle/tickle. Whilst I don’t like it - I just do the mindfulness thing and it does pass. The flooding seems to have occurred more in times of feeling stressed - but it’s not Co fined to difficult times - it can happen at any time at all. I don’t usually get headaches but have had one for about a week now and not in the usual painful head places - so I’m putting that down to the change in temperature. My head seems to physically hurt whenits cold. Have you got anyone nearby you can call on if you feel poorly in the night ? I honestly think if you become too breathless you should call an ambulance. I knowb breathing difficulties is quite high on their list of priority call outs - so don’t be afraid to dial 999 and let them come and assess you. They can give oxygen and sometimes they leave you with a little oxygenating machine and a mask which will make your breathing much less problematic. I thibk Doctor surgeries can provide these as well ? You shouldn’t have to suffer in silence Cat for the sake of being brave - don’t be afraid to call 999 if you’re struggling with your breathing. Sending you a hug - message me anytime at all.
Thanks so much m'dear. My head symptoms are very much a matter of pressure and feel like rushes of blood to the brain ; really uncomfortable and a major cause of headaches.
I'll message you when I feel up to typing more Elenor ; I really appreciate your support though, truly. xx
Hi Cat, I can't help at all with your symptoms but just wanted you to know someone is 'listening' as you are clearly having a horrible time. I also think you are very brave because I would have gone back to A&E with those symptoms. I guess that although you now seem to be in persistent AF you can't have a cardioversion because you are not taking an anticoagulant? It doesn't sound like something your GP can cope with.....either 😖
I hope someone can help, if not I do think maybe a call to 111 at the least would be a good idea 💓
Oh Dear Cat, I do hope you're feeling a tad better. I've not visited the Forum for a few days so I'm sorry you've not been feeling so good. I wish I was experienced enough to think of a reason this has been happening but I think medical intervention seems like the answer. It's frustrating when you know your own body and it's hard when you have to explain everything over and over again to different medic's, I'm sure there must be some reason why your feeling so lousy. Take care of yourself lovely lady xx
Hi cat I'm sorry you are still feeling bad you are a fighter and always will be! You've been through so much to give up would be a sad backward step! Take care All the best david 😊😊😊😊
Hi there, poor you, how are you today? I am on flecanide 100mg twice a day and Bisoprolol. At the beginning I would walk my dogs and halfway would have to sit on a bench to get my breath back and pretend to be enjoying the view ha ha. One very young specialist I told said I think it is just you. But I stuck it out and I must admit after 12 months I feel very good touch wood. Waiting an ablation date think they have forgot me. But my thoughts are really with you. Lots of people don’t understand what we are going through. I must say don’t put off dialling 111 they are amazing, I have called them quite a few times. Once I mixed my tablets up and the doctor called me at 12.30am and again in the morning he was so nice at 8.00am. Anyway enough of me. Anyway you shouldn’t be going through this, really annoy the doctors if you have to. And try try and look after yourself. Write again when you feel up to it. If power of thought helps I will be thinking about you. Xx
From Dr. Google - a lot of your symptoms could be a side effect of the Flecainide including shortness of breath while lying down along with dizziness. Anxiety is also a common side effect.
It also causes headaches, numbness, tiredness and tingling. Add in the other 2 drugs side effects and interactions and it could be causing almost everything including the A fib as it is freaking you out.
I would try talkig to a pharmicist about side effects and how you feel. They are more focused on the drugs. It seems lot of Docs aren't comcerned with quality of life impacts from side effects.
I wouldn't let the increased chances of a brain hemmorage scare you away from taking an anticoagulant. If your CHADS2 score indicates, it would protect you from a serious Afib stroke.
Other people on this board can give you their views of thedir concerns of the risk of a hemmorage type stroke vs A-fib stroke. It is disconcerning. For me everytime I get a Flecainide head ache I wonder if its a Wafarin caused brain hemorrhage. After 3 years I should be used to it by now.
An engaged and active patient does better than one that just goes along with what ever the doctor says.
You're not being a wuss. The intensity of the symptoms in the head is something I've also had, dizzy and running out of breath and my HR was 220 when they could actually pin it down.
Your symptoms sound severe and you should not be feeling this way with AF. The head symptoms don't sound like anything AF related, but the lack of breath and passing out feelings do. Your medication may not suit you and could be making you feel worse.
It's not normal for AF to keep anyone in bed. You must seek medical advice today.
Big hug, we're here for you. Please let us know how you get on.
Jean
Hi cat3. Stay strong, I agree with jwsonoma above re Flecainide side effects. If it helps, I had all sorts of side effects, headaches, wierd dreams, visual disturbances, dizziness, almost constant palpitations for 4-6 weeks (some went before others). I now feel back to my old self.
HOWEVER - with your history and given how debilitating and scary this is for you, seeing a neurologist, if only for peace of mind, but certainly to make sure you are safe seems to be a priority.
Like others here, I’m concerned at the lack of anticoagulant.
There is a 'test' called HASBLED or similar, which helps one to decide if the risk of a bleed is greater than the risk of an AF type stroke. Each letter stands for something that should be considered. Find it on the internet, and then discuss it with your doctor in the light of your medical symptoms, to decide if anticoagulants are appropriate or not in your case.
Hi, so sorry to see what your going through. I would look to side effects of medications, or being over medicated. Speak to your doctor. Make a list of things you want to say. You are your own best advocate. Fight for your quality of life. Very best wishes.
The First thing is go back to the Drs who prescribed these tablets and explain the symptoms obviously one or other are causing the problems and it's not nice to be feeling as you do every day. x
Thank you all for your replies ; I really appreciate your support. I've found that the symptoms are strongest after either eating or taking the meds (always do both together) so I'm experimenting this morning by just taking the meds and delaying the food. So far today it's not as severe ; just rumbling, but will wait & see.
When I have a clearer picture I'm going to phone the cardiologist who I saw in hospital (& who prescribed the Bisoprolol) for advice. And if he wants me back I'll phone an ambulance and get monitored along the way.
Sorry I haven't responded individually, but thank you again to each of you. Cat x
Flecainide should be taken on an empty stomach or one hour before food and I have heard the side effects are horrible if you ignore that. It also causes flushing and headache and can make your arrhythmia worse. We always say don't read the side effects part of the leaflet before you have side effects but once you do......
Really Buffafly ? I've taken them for over 25 years with no ill effects but never considered how/when to take them. They were prescribed for SVT and I have to say they changed my life by banishing repeated attacks of Tachycardia.
I guess meds which can be greatly beneficial for one person's physiology can be disastrous for another's. 🤔
I thought it was a new prescription, sorry! However the instruction is in bold so there must be a reason for it? I took Propafenone which is in the same class but after a few years I developed atrial tachycardia as well as PAF, not allowed to take it now. It seems physiology can change so it has become proarrhythmic for me.
Have to admit I never read the accompanying leaflets. The one time I did there were some really scary side effects which kept me in fear for ages but which I had to 'swallow' as the drug was essential ! 😝 x
I am no expert but the side effects I had from bisoprolol were very similar to your description. I honestly wanted to die and I have improved radically since they changed my beta blockers.
Thank you Healme. Can you tell me which beta blockers you're on now ? I was taking Metoprolol previously, but the cardio changed them for Bisoprolol which are supposed to be slow release so more reliable for AF ??
My GP had me re-admitted to hosp. yesterday as I had a severe attack at the surgery but, after more blood tests ECG etc., I was sent home after being told I'd be re-assessed after further outpatient tests in 2 weeks time.
Sotalol it was suggested by my cardiologist.I'm not sure if it would suit you but the improvement for me from Bisoprolol was phenominal. I hope things improve soon for you. It's a worrying time.
Thank you for that Healme ; I would've expected to have seen some improvement after two weeks of taking the Bisoprolol but, if anything, symptoms are more persistent and severe.
I'm keeping notes of other folk's experiences of their medications and, if things don't improve, I'll have the extra knowledge to suggest alternatives. It's true that we each can react differently to drugs but presently I've little faith in this present one. I was back in hospital again yesterday after a bad attack during a routine appointment at my GPs surgery & she phoned for an ambulance, so it's all on record. 🤥
Oh no Cat im saddened to hear this. I really hope that pain stops for you. I just wanna say I will continue praying for you and hope they can fix or alleviate this somehow. Much love xx
Oh Armani how sweet of you to come with support and good wishes. This condition has eclipsed the breast cancer & even the SAH, in that treating those was clear cut ; they either worked or they didn't (I'm SO grateful they did). But with this AF, three weeks on, there's no respite and my follow up appointment isn't 'til January !
Thank you so much for your prayers m'love ; please accept mine for Tony and yourself.
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