My heart story............

[Gladstone001]

Although I have been a member of this forum for a year, this is my first blog. I have really learnt a lot from other members, particularly about triggers and treatments. I am 60, male, and have had chronic paroxysmal AF and Atrial Tachycardia for more than 20 years. I have had 3 ablations and was lined up for a 4th in Spring this year. For many years my event frequency was between 5 and 15 days and each event would generally consist of a mix of AF and AT to 160bpm continuously for 12 to 24 hours). At first I would attend A&E to get help but this was always unpleasant and unhelpful and now I always self-manage at home. I have an EP who I see once or twice an year and who has performed 2 of the ablations. Triggers were difficult to assess, but coffee, stress and serious exercise (heart rate over 120) could all cause it. AF was often preceded by ectopic beats a few hours before, so I got a warning!

I am a long term Sotalol (beta blocker) user up to 320mg per day but now at 160mg per day. I carry a 80mg Sotalol as a PIP but this normally doesn’t help. I have tried Flecainide but it gave me very bad eczema; and Propafenone but it was pro-arrhythmic. I take other meds for hypertension and hyperlipidemia, Apixaban as a blood thinner and Folic Acid and Vitamin B12 to keep Homocysteine (an amino acid) levels down.

I use a single lead Kardia device with an app on my phone and record all “events” to show my EP. I also keep an accurate log of events on a spreadsheet (again given to my EP).

I have always experimented with supplements but generally have had no success in relieving symptoms. However, about 2 years ago I discovered MitoQ Heart, a New Zealand supplement containing L-Carnitine, Magnesium, Vitamin D3 and a refined version of CoQ10. Its expensive but it did significantly extend the time between “events”. I was impressed but sadly one of the ingredients (maybe a filler, etc) gave me very bad eczema. Since then I have been trying to create my own cocktail with the help of comments from this forum, and others. Back in Spring, I started increasing the daily intake of Magnesium Glycinate up to 500mg, Ubiquinol (CoQ10 Kaneka) up to 200mg whilst keeping L-Carnitine steady at 300mg and Cinnamon Bark at 600mg and have now been Ectopic and AF/AT free for more than 3 months….! I have come off the waiting list for the 4th Ablation! My EP has checked for drug interactions and all is OK.

I did try to supplement the Ubiquinol with 10mg of PQQ (Pyrroloquinoline Quinone) to enhance the passage of the Ubiquinol through the mitochondrial membrane in the heart (similar to MitoQ) but this did not work and I got bad Ectopics.

Many thanks to all who participate in this Forum, from whom I have learnt a lot, particularly about Magnesium and CoQ10. I look forward to Patients Day to continue my learning.

Gladstone001

[Paulbounce]

Hi Gladstone.

I'm sorry to hear about your problems.

Maybe I have misinterpreted your post ? However if your HR reaches 160 for 12 - 24 hours IMO it's needs attention.

I'm still a bit of an afib 'newbie' (two years in) so please forgive me if I got the wrong end of the stick.

Best,

Paul

[CDreamer in reply to Paulbounce]

In my experience - where do you go? If you go to A&E all that happens, even if they admit you, is monitoring and IV drip -if you are lucky. I can monitor myself at home. If you are registered with an EP you are an outpatient clinic patient and A&E won’t do anything without your consultant say so and they can never reach your consultant. Purely my experience.

Now if HR exceeded 200 for any length of time I would be doing something!

A&E is for emergencies and frequent AF or tachycardia is not an emergency unless there are indicators of something else going on. When the scenario described in Gladstone’s post happens frequently - as it did for me - you just get fed up and like Gladstone feel more comfortable at home. On the few occasions when I have felt unwell with high HR I have called Paramedics and they have always been much more helpful and on several occasions used valsalva manoeuvres which have converted me - which meant I didn’t have to go to hospital.

I checked this out with my EP who said that was fine - whatever I was more comfortable with and no need to worry about being in AF with high heart rate as long as I was anticoagulated and I wasn’t experiencing pain or unusual symptoms and I didn’t try running a marathon.

[Paulbounce in reply to CDreamer]

Hi CD.

Sure - I fully respect your opinion. However for me personally I wouldn't hesitate to seek medicial attention if my HR was 160 for 24 hours. I would be on the job there and then.

I guess we all are all different and have a threshold of when we should act. For me personally 160 for 24 hours (or less) would warrant attention.

Have a great weekend.

Paul

EDIT post - just want to add if my HR reached 200 I would act there and then. That's starting to reach a dangerous level.

[Lacarno in reply to Paulbounce]

Well my Doc told me anything over a 100 she wanted to know and anything below 60 l have to let her know as well

[Gladstone001 in reply to CDreamer]

Hi CDreamer,

Your experiences sound similar to mine. A&E for me is St Georges Tooting or St Helier, Sutton, both on SW London. There is generally no Cardio available in person or on the phone and I am as knowledgeable as the A&E Docs on my symptoms. My HR has never exceeded 200 but I think I start to feel faint around 180 to 200 bpm. A&E time!

Valsalva has never worked for me and nor has cold water shock. Once you have experienced these events over 100+ times, you do develop your own management techniques which includes breathing, meditation, etc

Long period of very high HR can bring on some minor angina-like pain which remains for a while after the HR subsides. I haven't had this very often, but I will probably feel shit for a day!

[Gladstone001 in reply to Paulbounce]

Hi Paulbounce,

I would get 160bpm for a few hours and not for the full period. My heartrate would vary significantly from hour to hour. The longest I have had a continuous HR above 150bpm is probably 6 hours (mix of AFand AT) ! I generally curl up in a ball and start breathing exercises when I get focused. A&E didnt really help, they can get you on a drip and slow the heart a little and maybe attempt a cardioversion with drugs, but generally its unpleasant. I gave up attending A&E after a few visits and self-managed at home.

[Paulbounce in reply to Gladstone001]

Fair play Gladstone - sounds like you nailed it. I'm still learning about afib and need to do more research methinks.

Well done and thanks for your post - I have plenty to look in to

Many thanks Paul

[Singwell in reply to Paulbounce]

I'm.pretty new too but I asked my EP about this specifically. He's supposedly one of the top 10 in the UK which is why I pay to consult with him. He pretty much confirmed what CDreamer has said lower down: AF is about self management - what makes you the patient feel comfortable - high rates of less than 200 even overnight are not damaging. Though they may be distressing. I've personally been up in the 150s and actually like you I don't like it. But when I've been to A and E all they do is check you out and give you more if your pills. I can stay at home and do that!

[CDreamer]

Interesting! L-Cartinitine and Magnesium were not at all helpful for me, actually made me worse and CoQ10 worked better than Ubiquinol.

Sounds like you have a found a combination that works for you so good on you. It’s so hard because we all react so differently to the same substances, whether they be pharmaceuticals or supplements. So agree with you regarding fillers.........I’ve had same medication made by 2 different companies - same degree of active ingredient but one works for me whilst the other doesn’t.

Long may NSR last for you!

[Gladstone001 in reply to CDreamer]

Hi CDreamer,

I think we are all different but the majority of folk seem to report the benefits of Magnesium (as Glycinate, Citrate or Aspartate) and CoQ10 (in its various forms). Ubiquinol (kaneka) is a form of CoQ10 that is more readily absorbed into our cells and mitochondria than Ubiquinone and again regularly reported to have healthy heart benefits. The 2 together seem to provide excellent heart protection but I really have to watch out for strange fillers as they can cause side effects, in my case generally eczema. Yes, it seems to work for me and my EP was surprised, but supportive.

[Gladstone001 in reply to Gladstone001]

I should have added that the supplement combo that I take does seem to have a small impact on the effect of Apixaban, it makes it a little more efficient, so I may have to reduce the daily intake of Apixaban a little in the future.

[CDreamer in reply to Gladstone001]

I can’t take oral Magnesium - period. Contraindicated for another condition.

[Singwell]

Wow thanks for sharing. There's a number of supplements here I've never heard of!

[CDreamer in reply to Singwell]

If you research Mitrochondria support supplementation you will see they are all recommended. Another is D-Ribose - good for brain fog but you need to be careful as it is a glucose so diabetics beware.

[Nafi]

Hi Gladstone, thank you for the link . Very interesting read . Coq10 is another supplement new to me but will definitely research it as only to willing to explore anything that may help . Do you have any suggestions as to where to purchase it from please?

[Gladstone001]

Hi Nafi, I buy Ubiquinol soft gels from Govitamins, a small UK company. They presumably import and sell via eBay. Make sure that you buy Kaneka quality.Regards,

[Gladstone001 in reply to Gladstone001]

I am aware that the quality of Ubiquinol soft gels can vary across the world. KANEKA is a brand that has a high level of quality assurance and is sold to responsible Vitamin/Supplement companies who then repackage it and sell it under their own company name whilst still using the KANEKA logo. Ubiquinol soft gels are also manufactured in Asia, particularly China where there is no such quality assurance - these can often be surprisingly cheap. I believe that you get what you pay for - beware of cheap repackaged Asian imported Ubiquinol.

[Singwell]

Thanks for pointing me towards this thread. I'm going to start conservatively with reliable source of CoQ10 together with my magnesium and see how I get on.

[Gladstone001 in reply to Singwell]

I am now using Doctor's Best Ubiquinol soft gels (these are KANEKA soft gels manufactured in USA). Readily available in UK with some good prices on eBay.😀

[Fibber222 in reply to Singwell]

Hi Singwell, please can you update me how you’ve got on with magnesium etc and details if they’ve worked. I have regular ectopic and PAF every week or 2,now and will try anything to help.

[Singwell in reply to Fibber222]

I've been taking high potency magnesium twice daily for months. I followed the advice given by York Cardiologist and take magnesium taurate. It hasn't stopped my AFthough! I started taking the Ubiquinol just over two months ago after following this thread and I do feel better. I tend to get my episodes every other month. My last one was milder than usual and also short lived. However, this might also be due to the brand of Flecainide I'm taking. Some other forum members reported doing better on the Accord Brand of Flecainide and it so happened that's the one the pharmacist gave me in January. I noticed I felt better and asked her to try and get it in for me. I explained that my HR would often go up randomly in the mid afternoons, even if I was sitting down or pottering in the kitchen. This no longer happens. So - I still get AF but currently it seems milder - I feel more stable and also have more energy. Could be due to a number of factors. Sorry there's no clearcut answer for you!

[Fibber222 in reply to Singwell]

Thank you for replying Singwell. I may try the magnesium although my cardio said there’s no proof that it helps AF. My episodes are getting closer together now-.sometimes weekly. I take Max dose of sotolol and can’t take flecanide. The only other option is to try donedarone or amiodarone which I understand arent very nice drugs to take. Also ablation may be an option. Thank you again for your reply.

[Singwell in reply to Fibber222]

I'm on Tildiem, which is a calcium channel blocker, as well as the Flecainide. Hate the calcium channel blocker! Hopefully, when I've had my ablation, we may be able to adjust that part of the regime. I'm sorry your episodes are getting more frequent. Do they last a long time and are you very symptomatic? That can be miserable.

[Fibber222 in reply to Singwell]

Hi Singwell,

[Fibber222 in reply to Fibber222]

The last 2 were only 2 1/2 hrs but it’s the irregular beats that concern me in between episodes. They can go on fir hours. A mixtures of normal and then missed or extra ones. Then goes to normal again. I would hazard a guess that the max dose of sotolol is curbing the length of Af episodes but waiting to see how it goes. I’m beginning to think that ablation may be helpful now but don’t want to make it worse

[Singwell in reply to Fibber222]

That's the big conundrum isn't it? Will it be an improvement or make things worse? In my case I feel it's unlikely the latter but I do not - as far as I know - get ectopics. Occasionally I feel like my pulse skips a long beat but it's always ok when I check with the Kardiamobile. I could be missing something but on the whole if I feel well when I'm not in AF then I concentrate on that.

[Fibber222 in reply to Singwell]

I don’t have a Kardio mobile but I think you have a good way to deal with these weird beats whereas I tend to get anxious which probably doesnt help. I thought I was dealing really well with Af but as it’s getting far more frequent I am tending to dwell on it far more.

[Fibber222 in reply to Singwell]

Please see my reply below. I seem to have replied to myself- sorry!

[Hidden]

I was delighted to hear you have finally found something to bring you relief after so many years of misery.This is very helpful information , which will certainly help alot of other's experiencing an endless and unecessary nightmare..thankyou.

[Hidden]

Very interesting. How did you decide which supplements to try? Were they suggested by your EP or , if not, did he approve them?

[Gladstone001 in reply to Hidden]

Hi, The ideas all came from reading posts on this forum. I read a lot! And then a little google research to cross check ideas. The magnesium and Ubiquinol combo particularly came from this forum and a previous trial of mine of a supplement called MitoQ. My EP was interested but did note that there was little clinical research to support the supplement cocktail. He was supportive (sort of) but did not want to change the formal medication (Sotalol, Apixaban, etc). I have been AF free for One year and three days.....

Gladstone001

😀👍

[Gladstone001]

still going strong with no AF re-occurrence !