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Anybody out there have atrial fibrillation as well as T1D??

rachy0121

rachy0121

Well-Known Member
Messages
153
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
being diabetic!!
I'm 23 and have been in permanent atrial fibrillation for years now

Would be pretty good to talk to someone who has AF and diabetes together???
 
I had them together for about 2 years, but I'm type 2 and a lot older than you (I'm 56) so I don't know how much use I would be for you.
 
And I'm 73 so I'm even less use but what's permanent a/f? Mine comes & goes (bit like my brain)
 
It's when it stops coming and going and just stays in AF all the time . I went to hospital to have my heart shocked back into rhythm 3 times. The first and third times didn't work. The 2nd one worked for about 18 months. Then 2 years ago I had a procedure called ablation, where they insert catheters into the heart and 'burn off' the bits that aren't giving the correct impulses. I have been fine since then :)
 
Pretty much what zand said
I have my cardio version in a few weeks and then talk of ablation in London afterwards

Did it make you feel like absolute ****?? Because I am physically exhausted constantly.
 
Well I hope you get the right treatment soon because it must be awful what with T1 as well. My episodes last between a few seconds and a couple of hours and with my heart going at double speed with half the output I just have to take it easy. I used to fall asleep in the afternoons but that was T2, and it doesn't happen now. zand is more on your wavelength so all good wishes from me.
 
Well the cardio version was OK. I felt weak for about a week afterwards, but it was good not to feel so breathless. I did have slight burns on my chest which itched a lot as they healed, but it was OK really. It was hard to go through that when it didn't work though. The disappointment when I came round and they said it hadn't worked was immense.

The ablation was harder to get over. It took me 5 months to feel anything like normal again, but it's the best decision I ever made. Before the procedure I could only walk a few yards without getting breathless and I couldn't bend to tie up my trainers. 8 months after the op I walked 7 miles. 18 months after I walked 14 miles. It's just amazing to have energy again.

Don't be put off by my experience of ablation. I had mine done exactly 2 years ago at John Radcliffe hospital Oxford. Remember I am a lot older than you. I was also a lot younger than most of the people who had the treatment. My procedure was meant to take 2 and a half hours, but took over 6 hours, which was why I took so long to recover. They had thought I would need to have it done 3 or 4 times to complete it. However they finished in one (because I was young enough and fit enough to go through a longer than normal op.) I was originally told I would need a week's bed rest after the op, but I had to have 2 because they had done so much work on me. I am delighted with the results! I have a life again. :)

I'm not sure of the extra complications because you are type 1. Presumably they have to make sure your BG's don't drop too low when you are nil by mouth.

I've just read DeejayR's post. My resting heart rate was anything from 120 bpm - 160 bpm when I was in AF. Now it's normally around 70 or less.

Are you taking warfarin or any similar anticoagulant?
 
Wow
Thank you to @DeejayR

I've Been told that breathless isn't a symptom of AF and that I shouldn't feel it which is concerning because I feel it most days and extremely exhausted. I'm only 23 and like you said I feel like I have no life as I'm constantly needing to nap or rest every day.
I'm worried the cardio version won't work

The ablation side of this terrifies me, were you awake for yours? How long the burns take to heal after the cardio version?

I just want to be normal again and feel like I have some energy!
@zand
 
Well it most definitely is a symptom of AF! I was in hospital 4 times and met 12 other ladies with it and they were all breathless. I felt exhausted too. Your heart is doing roughly double the work, you will feel exhausted. Some people don't have any side effects for years. I wasn't one of them.

Are you on any drugs for your heart? I had digoxin and amiodarone and bisoprolol. I think the cardio version probably will work. It seems to in most cases. The burns took a week or so to heal, they just looked funny! They weren't really a problem.

Yes ablation is terrifying. No I wasn't awake for mine. It wasn't an option for me. Going through it all was fine. The worst thing was actually needing all that bed rest. My family were shocked at how weak I was when I left hospital, but I only stayed in 1 night (it was meant to be 2) because they needed the bed. lol. I put chairs around the house because I couldn't manage to walk far at all for the first couple of weeks. To be honest you soon forget all that though, I'm grateful to you for reminding me just how far I have come. It is well worth it. I honestly didn't feel life was worth living before the op, this Summer I ran 200 metres to catch a train. Amazing! The best thing for me was when I had come round from the op and was in bed watching my monitor and the heart rate and rhythm was NORMAL, I can't describe how good that was!

I think all your worries and concerns are normal. It's always worse when you are waiting for something to happen. It's OK once you get there and start going through it.
 
zand said:
Yes! Thanks :)

I remember a while back I was discussing AF and someone else knew of alternative treatments but I'm not sure where to find that info now. Was this you @Brunneria? Or am I getting muddled?
Click to expand...

My father's heart was missing 1 in every 16 beats (way back in his 60s soon after retirement)
He had a single acupuncture treatment, and his heart went back to 16 out of 16.
He's now in his 80s and digging out tree roots from a field, with my bro in law.

Obviously, this is not scientific evidence!

But my father's consultant was astonished that his heart had improved without treatment.

Personally, I am more astonished that it is still good 20 yrs later!
 
Brunneria said:
My father's heart was missing 1 in every 16 beats (way back in his 60s soon after retirement)
He had a single acupuncture treatment, and his heart went back to 16 out of 16.
He's now in his 80s and digging out tree roots from a field, with my bro in law.

Obviously, this is not scientific evidence!

But my father's consultant was astonished that his heart had improved without treatment.

Personally, I am more astonished that it is still good 20 yrs later!
Click to expand...
Thanks, I thought it was you! :)
 
I've now had 3 different people, my cardiologist, my gp and a registrar in the ane ward telling me I shouldn't be feeling breathless or like my heart is racing. But I then said and I quote "but my heart is racing. That's what AF is so isn't that normal?" They all said no. Yes exhaustion is the worse symptom I have. I am in bed most evenings at 7 and asleep by 9. If I have a late night I know I'll be making up for it for the rest of the week.

I will request that I be put to sleep as I don't think I can manage being awake for that sort of thing. I'm on warfarin only to thin my blood but nothing else. I was told I can't have beta blockers because I have a pacemaker so it would counteract.

I'm so glad you've finally been mended! Must feel so much different!! I'm excited to be back to NSR again just a little apprehensive about the surgeries Do you find that having both diabetes and AF (when you did have it) to be completely draining?
 
Yes, so very draining. The first time I had AF for a couple of years I wasn't diabetic (I was prediabetic). At first it didn't bother me too much, but the last year was awful, I had no energy for anything . Then my AF was gone for 18 months ( after the 2nd cardio version), but I became diabetic and that on it's own was completely draining too. Having the 2 together was a complete nightmare. I gave up going to watch football matches with my family, I stayed home as much as I could. I don't know why they are telling you shouldn't be feeling breathless or like your heart is racing. That's exactly how I felt....Is the pacemaker meant to help with all of that?

I think nearly everyone is put to sleep for the procedure. Its easier for them as well as nicer for you. So the main thing you need to work on is to make sure your INR stays in target range....the last thing you want is to go in for a cardio version and then be sent home because your blood is too thick or too thin....and staying well of course. You'll be fine. It's just a pain waiting around all day in hospital. The whole thing from going into theatre and waking up again only takes a few minutes.

Yes It does feel very different. It's so nice to be able to exercise and be 'normal' breathless. I was forever checking my pulse at first because I couldn't believe I had been fixed! I am really glad you started this thread because I had begun to take my heart for granted and I was getting a bit lazy with exercising. Thanks for reminding me how precious good health is. :)

Let us know when you are going in and how you get on. And if you have any more questions I will try to answer them, but I wish there was a type 1 who could help you too, because they may have some more relevant information.
 
Don't know anything about AF but if having surgery I would research and find the best person for the job, even if that means having to travel across the country for surgery. It can make a real difference going to a surgeon who specialises in this op and has consistent results. Hope all goes well :-)
 
moz1 said:
Don't know anything about AF but if having surgery I would research and find the best person for the job, even if that means having to travel across the country for surgery. It can make a real difference going to a surgeon who specialises in this op and has consistent results. Hope all goes well :)
Click to expand...

It isn't 'surgery' as such. The cardio version is simply using a defibrillator to get the heart back into sinus rhythm. The ablation doesn't involve any incisions in the heart or chest, simply passing catheters through you. The good thing is they can check out how healthy your arteries are while they are there. Not that many hospitals carry out ablation, so those that do would all have experienced doctors doing it. As for consistent results, the OP is a lot younger than most people who would have the procedure, so I don't think general statistics are necessarily apt in her case.
 
I initially just wanted to see if someone else had the same symptoms as me really only because the doctors has said no my symptoms weren't of that of AF so I was a little concerned it could be something else

But it is getting to the point now where my life has completely changed and I feel like a whole different person and not in a good way. I just would really want this all to stop. I can honestly say I have never felt this unwell in my life and wouldn't wish this completely lack of life for anyone
 
rachy0121 said:
I initially just wanted to see if someone else had the same symptoms as me really only because the doctors has said no my symptoms weren't of that of AF so I was a little concerned it could be something else

But it is getting to the point now where my life has completely changed and I feel like a whole different person and not in a good way. I just would really want this all to stop. I can honestly say I have never felt this unwell in my life and wouldn't wish this completely lack of life for anyone
Click to expand...

I don't have AF but I feel for you! Stay strong, it must be hard!! xxxxx
 
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