Last chance saloon?

[Bigkahuna]

I suffered x2 TIA's at end of Feb 18. They came out of the blue despite being on meds for BP but once I got to A&E I was told I was in AF & my BP was 220/160. I spent a week in a ward while they got my BP under control then discharged.

I then waited months before I even got a follow up appointment for the stroke clinic.

After my discharge I felt wiped out, but expected to feel better within a couple of weeks, however I didn't & trips to my GP resulted in some different meds combos to try & combat the terrible fatigue.

Eventually my GP said he felt I was displaying signs of chronic fatigue syndrome. But as I was still in AF he referred me to cardiology as this hadn't been done already. I then returned to the stroke clinic who sent me for an MRI. It was explained to me that this showed footprint damage to the brain, caused by the TIA's, & that it had likely changed the chemistry to the brain & could be contributing to the fatigue. At the same time it was also established that my testosterone levels were low that could also be affecting my system.

Once I was seen by a Cardiologist & PAF was diagnosed this was sighted as the cause of my fatigue. Now I've had numerous tests etc & am going for cardioversion on Tuesday, however I've been told that they don't expect it to work & I'm not going to be offered ablation. The EP is of the opinion that I've had AF for years & tolerated it without knowing & that the AF is too well established to ward off. He has dismissed the MRI scan & the footprint damage comments & said that being overweight, which I am, is the sole cause of my AF & fatigue.

I had an episode of SVT when I was 26 that required cardioversion that wasn't really followed up more than one appointment to make sure I was still about, so I wonder if the AF has been lurking all this time.

I'm now 49 & frustrated that I am so weak I can barely do anything. I haven't worked for 14 months & am facing early retirement. Yes I'm overweight, but I have always been fit & strong despite the extra poundage. I'm on the 5:2 diet currently & have made good progress since Jan, over 10kg lost.

I'm on warfarin, amiodorone, bisoprolol, enalapril & doxasozin.

I'm not hopeful of a good outcome for the CV after the comments made by my EP. What I find frustrating is that the 2 clinics I'm under don't appear to be talking to each other. Maybe if the CV doesn't work they'll take me off the Amiodorone & leave me alone to enjoy my AF life on anticoagulant & beta blocker? I've been told that if the CV does work but my fatigue is still an issue that I may be referred to the chronic fatigue syndrome clinic.

Anyone had similar experiences?

[meadfoot]

Wow what a lot you have gone through and the waiting times have been appalling. Why medics don't talk to each other and work as an overall team to help you is difficult to understand but it seems to be the way things are.

Sorry I can't answer your question just wanted to send you support as a fellow af and svt patient. I think it's time to push your teams and if you aren't satisfied with their answers then ask for second opinions. We only have one life and need to keep control of how our medics respond to our issues. Please ensure you are getting the best medical attention possible and shout out if not. Well done on the weight loss front you have done really well.

Good luck and best wishes, let us know how you get on and I hope someone on the forum has personal experience to give you which will help. Take care if you stick with it things can improve substantially.

[Hidden]

Congratulations on your determination to lose weight. 10 kgs in 3 months is remarkable. If you can get your BMI back in to range, you should see improvement in your BP, AF and energy levels. Also, you might then be able to get off some of your medication and be reconsidered for AF ablation.

[irene75359]

I haven't experienced anything like you have, but just wanted to echo what has been said about a second opinion. One thing that comes out daily on the forum is how fresh eyes can see things totally differently. You have certainly had a rough time this last year and your EP sounds less than sympathetic. I would also push very hard to get an appointment in place for the chronic fatigue syndrome clinic regardless of the outcome of your CV.

Really well done on losing the weight, the five-two diet is successful for many people and apparently can do no harm as a lifestyle too, so keeping the weight off.

And the best of luck for your CV tomorrow, I will be thinking of you and hoping the outcome is positive. I am really sorry you are having such an awful time and am sending my best wishes.

[john-boy-92]

I'm not medically trained but I had a stroke in July 2016 and possibly a second four weeks later, I'm partially sighted from the stroke and didn't get support, I have paroxysmal AF, I've taken amiodarone and dronedarone, and two EPs who disagreed. Let's start with the good stuff: you aren't disabled, you write well and you can use a keyboard, and you have the determination to improve from where you are. You're going to make it but it won't be overnight.

If your brain has had a permanent and demonstrable change you've had a full stroke, not a TIA. In any case NICE guidance is that a TIA should be treated the same as a full stroke. A stroke can be followed later by a haemorrhagic transformation which means a bleed into the brain; the attending GP didn't recognise mine. If you can use your limbs, you can speak and your cognisant after a stroke you probably won't get support. You need to get referred to a Consultant Neurologist who can examine the MRI scan. My excellent Neurologist said that I could gradually return to cardio exercise as this increases the flow of oxygenated blood to the brain. I started with walking and gradually introduced short sessions on a rowing machine. She said that I must not do weights, hold my breath, or do inverted yoga poses. Some people don't tolerate amiodarone and dronedarone (it placed me "close to death"). Speak to the Cardiologist and EP to establish whether you can change from warfarin to another anticoagulant; Pradaxa (dabigatran) works for me but is far more expensive to the GP Practice than warfarin. Bisoprolol can cause tiredness; could you take amlodipine instead? Low testosterone levels can be related to being overweight as you may have a higher oestrogen level. On the positive side your chances of prostate trouble are less with lower testosterone (I've just had a prostate biopsy and may have to take testosterone blockers). You will feell like xxxx at the moment but you have the right attitude mate and, hopefully this forum can suggest the questions to ask the clinicians.

[Hidden]

Sorry to hear your story, and that is an amazing weight loss. well done you!!

Do you know why you are on amiodorone? I was on this for about 9 months (3 months pre cardioversion and 6 months following) and felt terrible for all of those 9 months. It is a horrible dirty drug.

Hopefully the DCV works and you can then start pushing for an ablation in the future

[Bigkahuna in reply to Hidden]

I'm taking the Amiodorone to slow my erratic heart rate down before the CV. It does appear to have worked but had a fair amount of nausea with it, particularly during the loading dose stage. I was taken off digoxin at same time & put back on bisoprolol which has floored me. My fatigue was bad prior to this but is now worse.

I suspect that if the CV doesn't do the trick they won't try again as the EP has said the AF appears well established. I see them again in July so will likely stay on Amiodorone until then.

In the meantime I will endeavour to keep plugging away with the weight loss.

[bennie06]

I was on a similar drug regime as you although without such aggressive side effects. Good luck with the conversion and remember not to overdo things in the first month, (a fairly high proportion of conversions fail in this period), also the Amiodarone will help to maintain normal rhythm. Hopefully in NSR you will feel much better and slowly normal service will be resumed. Stay positive and good luck.

[Wittycjt]

Have you had your kidneys checked i see your on enalapril and this could be a side effect. Also the afib could be making you tired, your heart has to do more work to push that blood around? Best wishes, Cindy in Delaware, US