Atrial Fibrillation - any decent forums?

Soldato
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I'm not after any medical advice or discussing medical conditions, as I know it's prohibited on here.

But, if anyone else suffers with afib can you point me in the direction of a forum they would recommend? I have found several, but it's difficult to judge the quality of them!

I hope this post hasn't breached policy and please don't offer medical advice or even discussion about the condition - just forum suggestions please.
 
Can't really point you to any forums, but I suffer from It bad, and have done for over 10 years, and have had loads of treatment and procedures. I am pretty much an expert on electrophysiology of the heart now. So if you want to ask questions, ask away. You may not like the answers though.

I obviously cant give you any medical advice, but I can help you understand the condition and any possible treatments (procedures, meds) that may have been mentioned to you.

EDIT: just read the original post again. As long as we are not giving advice, I cant see why we cant share our experiences. many people suffer from this.
 
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I wouldn't reccomend any of them really. it's easy to scare youself silly reading up on it. At the end of the day I would recommend to stick talking with your specialist.

I'm happy to chat if you want though. I am in the same place you are.
 
That's all great. So does that mean we can discuss it on here as long as we don't recommend treatment or offer medical advice etc?
 
That's all great. So does that mean we can discuss it on here as long as we don't recommend treatment or offer medical advice etc?

We can't recommend treatment or advice, but those of us who have had it can share their experiences of it. I can't see how it's different from discussing experiences of having a broken leg or the like.
 
We can't recommend treatment or advice, but those of us who have had it can share their experiences of it. I can't see how it's different from discussing experiences of having a broken leg or the like.
OK cool, because I had electro Cardioversion last Friday and found it to be an incredibly harrowing experience. I want to find out if what happened is normal practice or not.

I arrived, as instructed, at 12 noon and was directed to Ward 10 where I was greeted and shown to a bed within one of the rooms within the ward. A junior doctor came and introduced herself to me at some time in the afternoon and said she would be performing the Cardioversion. My Cardioversion actually went ahead sometime after 4pm.

As I understand it I was one of four patients booked in for Cardioversion that afternoon and I believe I was the last to receive treatment.

My bed was situated within a room which was directly opposite the room where the Cardioversion procedures were taking place and I watched as each patient was wheeled into the room to receive treatment. On several occasions the door to the treatment room was left open and I could hear everything which went on within the room, including lots of beeping machines and then actual screams or shouts from the patients themselves.

At this point, to say I was a little apprehensive when I was wheeled into the room would be a vast understatement.

I have to mention at this point that I have suffered with anxiety for the past 11 years, and that had always been focused on my heart - even though it was perfectly healthy at the time (ironic, I know).

When in the room I had the paddles attached, one to my chest and one to my back and then the Doctor seemed rather concerned and asked if I was having any chest pains as my cardio reading did not look normal. I said that I had been feeling chest pains but nothing more than what I usually feel when suffering with anxiety. She then went to find a more senior doctor/consultant for advice. The more senior doctor/consultant had to point out that the reading she was looking at were from the paddles and not from a full ECG machine. I was quickly wired up to said machine and everything seemed ok to proceed - my mental state at this time was going into overload as my faith in the doctor performing the procedure had dropped to the point where I was wondering if she was competent to proceed!

As i understand it they usually give 8mg of midazolam in order to sedate the patient enough to perform the procedure. I was given the 8mg and felt nothing, so another 8mg was administered but still (other than feeling a little woozy) I was wide awake. They ended up giving me 45mg midazolam and 2.5mg diamorphine before I was sedated enough to proceed.

They only have me two shocks (they usually can go up to the) as I was still not sedated enough to proceed with the third.

Everything was a little fuzzy for the rest of that afternoon, (I was as high as a kite) and a lot of the following day to be honest! But I was told, by my girlfriend, that I was given some medicine which I needed to take for at least the next three week and they would try Cardioversion again under a General Anaesthetic.

It wasn't until I looked up Amiodarone online that I realised what a heavy duty drug this actually is - to the point where it is sometimes delivered in hospital for the first few days as the patients need monitoring closely! I wasn't given so much as a leaflet on advising on potential problems to look out for let alone any kind of consultation regarding the medicine or the next step of my treatment.

All in all I found the whole experience to be quite harrowing and I have lost faith that UHCW can complete the rest of my treatment with competence, I therefore requested to be transferred to Leicester Glenfield Hospital's cardiology department for the remainder of my treatment/care as I understand they are one of the best in the country - and conveniently quite local to me.

I think it's probably more of a vent I needed more than anything - is this the usual level of care expected/received?
 
OK,

I have now had 6 cardioversions. That can be done as many times as needed. I have never been sedated for mine, but anesthetized.

They would have started with a 50 joule shock, then gone up to a 100 joule. The final shock is a 200 joule shock, but you seriously need to be out for that one, hence you being brought back. It's normal to feel crap after a cardioversion. You probably felt worse as well as it didn't work.

i have been on amiodarone since I was 14. It is heavy duty and the main symptoms you'll probably notice are halos and UV sensitivity. Sometimes when I'm tired, I'll see a halo around moving objects like my arm in front of my face or something. That's to do with corneal deposits.

The UV sensitivity is bad as well. You will need 50+ cream in the sun and even then you will feel uncomfortable and get swelling with enough exposure.

The main danger is lung toxicity, but I have been on 200mg a day for 20 years and am still fine. My cardiologist told me that the actual risk of lung toxicity is extremely low.

There is also a risk, but again, a massively low risk of optical neuropathy.
 
I haven't noticed any of the symptoms you mentioned, but I'm in the second week of the loading phase. 200mg 3xday for 1 week, 2x day for 1 week and then once a day from there on in. It has made me feel pretty grim though and you are correct, I have felt low just because it didn't work!

I never knew about them increasing the joules with each shock.

It seems that they don't tell you much to be honest. That was a concern to me as I just kept thinking "they're going to electricute my heart, that can't be good for it - what if it stops?".

6 is a lot of times - has NSR lasted long after each go?
 
Sinus has lasted anything from 2 months to 2 years. How long is a bit of string really.

Dont worry about them electrocuting the heart. The machine does the work. It knows the precise moment in your heartbeat to shock. And if the worst happens and you go into VT or VF, it will just shock again immediately and bring you out of it. It does no damage at all to the heart.
 
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Sinus has lasted anything from 2 months to 2 years. How long is a bit of string really.

Dont worry about them electrocuting the heart. The machine does the work. It knows the precise moment in your heartbeat to shock. And if the worst happens and you go into VT or VF, it will just shock again immediately and bring you out of it. It does no damage at all to the heart.

I wish my consultant would have told me that, especially because of my anxiety!
 
Even if the next 200 joule shock doesn't work, there are further things they can do.

Unlike me, if you have had no previous heart problems and have a normal heart, You may well be offered an ablation where they destroy the rogue circuits causing the fibrillation. Very effective procedure.
 
I don't suffer from afib, but as a long term anxiety sufferer I can sympathize. Sounds like hell. Well worth getting treatment for it if you aren't already.
 
Well vt/vf causing no damage isn't quite true. But the risks are much lower now a days.

As for you requiring so much sedative, did your cannula hurt when you had the injection? Almost sounds like it was tissued and the meds where not going into the right place.

Also if you can see or hear anything you don't want to a quiet word would have sorted that.
 
I meant that if the op was seeing into the room of the procedure and the door was left open then a quiet word could have sorted that.

But equally if you are known to hallucinate on certain drugs we have others we can try.
 
Isn't diamorphine basically heroin? No wonder you were high for the rest of the day.

Yeah, and the following day. I didn't snap out of it until about 7pm on the Saturday and it was really sudden, like fog clearing!
 
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