7weeks on....

[Scarlett-rose]

Hi everybody,please be gentle with me as this is my first post firstly thank you for all the blogs I have read with so much interest...7 yrs ago I had my first af attack, didn't know what was happening to me for a whole day and finally decided to get help as I knew something wasn't "right" , went to hospital had lots of tests etc, and medication rectified it,I was sent on my way to carry on with my life, no medication and told it was most probably stress or a water infection. 7 years on I got up the morning of my mums 90th birthday,once again I knew I wasn't "right" I carried on with my day...met my mum briefly but I knew once again I needed help, my doc sent me straight to emergency admissions at hospital and after a 2 wait was assessed and put on all the relevant machines and told "shocking" me was going to most probably be the most effective way to go, but they would try me with flecainide, which thankfully eventually worked. Following day I was sent home with my lil bag of medication and that I would need to be on that all the time from there on...well.....I can't describe how in a few days I changed, mentally and physically, I felt like I was trudging uphill thru treacle everyday and to try and attempt the filing at work was unthinkable, I could not think how the alphabet went, if I was at home and sat down I would fall asleep.then I decided to check out...BISOPROLOL on the net and that's how I came across you guys...what a blessing to find I wasn't alone. I went back to my gp who asked me if maybe "I was depressed"....errr no !!!! So my medication was halved and off I went, 2 weeks later. I still felt the same, back to the docs and pleaded that I came of medication, I just wanted to be me again, I couldn't justify feeling that rubbish for another 7 years befor another poss attack,I know that may sound selfish, but I just couldn't live my every day life feeling that rubbish.so now a week later I'm me again, no afternoon naps, the filings been done and the dusting also...I now know I need to regularly check my pulse and that I need to get to hospital if and when the next attack happens ( my doctors words).but I'm so grateful to be able to read all your blogs and to be able to find out why I felt I was loosing the plot, I will come on here regularly just to read and stay in touch but thank you everyone.xx

[Scarlett-rose]

P.s....sorry for the ESSAY

[BobD Volunteer]

Hi Scarlett, and welcome to the mad mad world of AF. There is no need to apologise for your post. WE have all been there and know very well how you feel. One of the biggest problems with AF is the things it does to your mind so just knowing that there are others out there who understand is a blessing. Just because one doesn't look ill doesn't mean that you can't feel like a ten day old dead fish.

First off you don't say anything about your age or other health matters so I would urge you to go on the main AF Association website and check out your stroke risk as whilst AF won't kill you, it can make you far more likely to have a stroke and frankly you don't need that. The CHADS2 and CHADS2Vasc2 scoring systems give you an accurate guide to whether or not you need to be on anticoagulation (warfarin or one of the novel ones like pradaxa). Many doctors really are not up to speed on this as progress has been rapid over the last few years and trust me when I say you HAVE to be your own expert on these matters. Do not be fobbed off with aspirin as this whilst it may be a blood thinner is not an anticoagulant and does nothing to reduce your stroke risk. Again sadly many GPs are ignorant of some of the most up to date findings. A recent study has shown that nearly 50% of at risk patients are not on suitable anticoagulants so try not to be amongst them. Somebody wise here said you can always stop taking warfarin but you can't undo a stroke.

I am sure that you will already know this but I must mention that AF usually progresses. The phrase " AF begets AF " is common. so don;t fret if you start getting more frequent attacks but please don't become obsessed by taking you pulse as anxiety can increase the likelyhood of things happening. If you do get an attack then yes, try to get to a hospital so you can have an ECG recorded and ask for a copy. Keep anything you get and if things do progress then you need to see an electrophysiologist, that is a cardiologist who specialises in rhythm disorders. and really discuss your options. Again AF Ass website has a whole list of fact sheets available on all related subjects so read, read and read as knowledge is power.

Good luck and do ask here if you have any worries

BobD

[Marion62]

Hi Scarlett-rose,

Glad you found this site - good essay!! It has helped me knowing that I am not alone and can ask questions and gain valuable information - otherwise I would feel totally abandoned and isolated.

I too recently came off bisoprolol as I got out of breath when walking uphill. and my legs would often not want to go any further! I am now trying diltiazem - will be doing some hill walking over the next couple of weeks so hoping the new medication will be better. I can't come off the meds as I am in permanent AF with no symptoms.

Don't GPs come out with real gems!!! - and mine is also always mentioning guidelines!!

Take care

Marion

[squiffy]

Dear Scarlett I am on Bisoprolol but can only take a very low dose. I have had AF attacks a bit more frequent so the cardiologist changed me from Bisoprolol to Verapamil and I was discharged WITHOUT ANY MONITORING and within two days was an invalid ! I saw my GP and he put me back on Bisoprolol which does leave me with a slow heart rate and a little tired at times but I would rather have a few more attacks of the AF than feel so ill everyday. I was also put on warfarin, which I was reluctant to do, but after reading all the comments on this site I was encouraged to realise that as I am at higher risk of having a stroke when in AF it does lower this risk considerably. I hope you don't have any more attacks but yes do keep a check on things and I wish you all the best.

[reme]

hi Scarlet Rose,I think that once you realize that you are not alone with everything that AF brings then half the battle is won.It certainly helped me.Personnely I think that mixing medication does not help and although my GP is very good in other aspects I dont think that most GPs are fully aware of the problems we have.Good luck & keep rememering that you are not on your own.

[djroute66]

Hi scarlet

I find the trouble with af is there is not one size fits all. I personnelly haven't made much changes in my lifestyle or habits. I still eat my stir fry vegetables every day (being a veggie.) so although warfarin is better than aspirin. It may not be the right choose for everyone.my chad rating is zero. And this along with me being a veggie as been taken into account and if I am still okay in November I will be given just aspirin and flecainide. I. Still go out on the week ends for a few pints. And I still cycle regular. I don't know if things get worse or not as time goes by. But I am not Sitting around waiting to find out.as far as I can tell af as not that long been understood and now we are playing catch up. I am positive that new break through s will follow . Keep smiling

Dave J

[Scarlett-rose]

Thank you all for your kind messages .... In reply to your question Bob regarding the CHADS, I have just done it and my readings are as follows..annual stroke risk...1.3%, CHAD2DS2VASC score 1 and CHADS2 score 0 , I'm unsure of the second 2 scores what they mean, Im 53 also...I just can't tell you how different I feel after coming off the medication I just thought I was on a down hill slope and that was how my life was to be. I think everyone on here is an inspiration and I'm so thankful I found this place to be able to share my thoughts x

[Bikerboy]

I am interested in your reaction to BISOPROLOL, as I was prescribed this (2.5mg) when I was discharged after a night in the Cardio unit in January, after being admitted with a heart rate of 150 and an irregular rhythm. This was considered due to a bout of pneumonia (chest x-ray confirmed). I wasn't feeling very unwell, just weak and generally "out of sorts"

Further AF episodes followed, during which I felt fine, and was only aware as palpitations made me check my pulse. I had a blood test, which, presumably gave me an acceptable CHADS rating, ( I think that's the term ! ) as I wasn't prescribed WARFARIN ,which I've learned from this forum is usually a necessary supplement to any AF related medication. Subsequently, the results of an echocardiogram, 24 hr ecg monitor and follow up x-ray were clear, and I felt well, so was discharged and told I could stop taking the BISIPROLOL.

12 day later I felt the tightness in my chest, achy shoulders and a general weakness and tiredness returned, and the AF episodes started again - but as I never counted a pulse faster than 100, I decided I had another chest infection and this was causing the AFs, so I didn't think I needed to re-commence the BISOPROLOL, which, as a rate control drug, didn't think I needed.

After a month or so of not feeling right, I lost patience, saw the Doc, during an AF episode as it happened, the ECG he gave me showed a heart rate of 116, although my pulse was much lower. Interestingly, he said many beats during AF don't make it to the brachial pulse, so you can't tell your true heart rate.

He suggested re-commencing the BISOPROLOL, and referred me to Cardiology, my appointment is in late July, but after 16 days of still feeling a bit weak and not right, I suddenly felt properly well again, good energy levels, and I can go out on my bike, pedal up a hill, get out of breath and recover normally.

Before I wouldn't have felt able to consider exercise which would do that.

Clearly BISOPROLOL is good for me, but earlier in the year, during the colder weather my hands were cold, in fact all of me was, and I really felt the late onset of spring!

I'll be interested to see what the Cardiologist has to say, but so long as I feel well, with good energy levels, so what if my heart is irregular every so often, should I be so be worried???

It could have been like that for years!

The best advice I've had (from this forum) is " continue with your normal routines, if you feel able" and "go with what your body tells you"

It is clear different medications work for different people, so work with the specialists to try and find the right one for you.

Good Luck. Bill