HOPE THIS "LONG TERM MEMBER" SUMMARY WILL HELP SOME OF YOU

[Shcldavies]

I have had this condition since 1993, ablation in 2019 a good partial success as I still have MAT which could not be ablated and is now kept in check by lifestyle and low (1.5) dose of Bisoopropolol. In this time I have tried with very limited success to establish if it can be cured or at least managed. There are some things I am certain about and some that are likely or believe in. I keep involved in the forum but only respond to posts that I think I can help with.

Potential cause of condition when I was pre-school had an electric shock which made my heart race, as far as I remember (limited memory and parents memory) the doctor said that I should rest/sleep and it would sort itself out in a few hours - it did. No symptoms until 1993, during this time I ran cross country, mid distance running, played football, rugby and squash without any issues. Problem really came to light in 1993 (age 39) and deteriorated slowly after this until my ablation. Unfortunitly my condition was not taken seriouly by the medical profession until 1997 when it was caught on an ecg.

The following is a summary of where I am now with my quest for answers, hope this can help some of you:

1. Ablation a great success, whilst not fixing the condition fully I have been able to live a far better (near normal) life after it than I did since 1993. Would recommend ablation to anyone, its not nice but managable and with very few exception will make your life much, much better. That said this is a very personal decision for everyone.

2. These irritants that can initiate the condition or make it worst over time:

Too much sugar, alcohol, stress, exertion, chemicals found in drinks (eg wine)/food/environment. All ok in moderation but cross your individual line at your peril.

Too little water, quality sleep

Medication, both wrong for individual condition of incorrect quantity of correct medication, can also be dibilitating and can slow HR to levels that heart reacts which can initiate symptoms.

Also medication such as NSAIDs and ani-fungal treatments (and potentially some others).

Poor electrolyte balance - we all need a good ballance of electrolytes for our heart to function, such as potasium, sodium, clacium, magnesium, iron, chloride. Too much or too little will lead to problems

Most if not all artificial sweeteners

3. Potential irritants

Too little vitamin D

Posture

Eating too much

Grapefruit, liquorice

Times of the year may be problematic as I tend to be most susceptible during October and November, perhaps SAD has a role in this.

4. Things that can often (not always) improve/fix symptoms.

Vagal manouvers

Breathing techniques

Positional readjustment (eg laying at 45 degrees)

Drinking water

Going to the toilet (its one of the Vagal moves)

5. Best source for information

YouTube Videos from Dr Gupta York Cariology

This forum with the caveat that we are all different and the information can be very missleading as drugs or supliment that work for some may be detrimantal to others.

Never change meds without Dr advice, also ask Dr if you are unsure about taking anything.

If you can afford it, a consultation with Dr Gupta may be well worth the money (if I remember correctly it cost £50 in 2018), which is quite reasonable compared to other private consultations.

Your heart is a very complex piece of kit, even the very best Doctors can only touch the surface of its abilities, it generates electrical signals from the movement of electrolite ions with a very precise combination of events, its cells can spontaniousy change from mussle cells to electro cells and it reacts to signals from your entire body through numerous nerve impulses (eg vagal nerve). It also has an incredable ability to fix itself (this can be detrimental in getting the correct medication for your condition). The answer to our condition is out there somewhere its just very difficult to find, as is getting the correct treatment for your individual condition.

[Mugsy15]

As this is basically a statement; a summary of your experience, it doesn't really require replies.

However I'd like to comment thus: we know what a mongrel condition AF is, and as you say, some forum members will have quite different triggers and symptoms to yours. For what it's worth I would align my experience almost exactly with yours. I recognise all of the triggers you list. If there is anything I would add it would be emotional stress, especially a sudden onset of fear or grief or excitement.

[dedeottie in reply to Mugsy15]

I also had an electric shock a few years before diagnosis….interesting!

I often find that my AF strikes not during times of sudden or chronic stress but when the stress is removed and I start to mentally relax. X

[Auriculaire in reply to dedeottie]

Ditto. My attacks either come on whilst asleep or when very relaxed reading.

[LCM79]

Thank you for your round-up. I relate to every word and also had an electric shock as a child.

[Mugsy15 in reply to LCM79]

I had an electric shock as a child too; things are much safer for kids these days. But I must say I don't think that's got anything to do with the onset of AF in later life.

[Shcldavies in reply to Mugsy15]

I did not relate it also, until a chat to my cardiologist, who said whilst no one knows what the long term effect could be (too many factors come into play), probably none, its not out of the question that any damage caused could have cause some changes to the electrical paths within the heart that could affect later life when the heart is not as robust. Will be interesting to see how many replies also identify this.

[Mugsy15]

I agree it's not out of the question. I know, for example, that childhood glandular fever can cause cardiac problems later in life.

Fair comment.

[Beelights]

Could you share a little bit about your electrolyte supplementation /testing regime? I'm finding it hard to know how much to get of each electrolyte and in which form. Do you test through your GP via blood tests or is it more intuitive than that?any thanks!

[Shcldavies]

Nothing so concrete - sorry. Its not that easy to establish the electrilyte balance in your cells (it can be different from your blood levels which are easy to establish). My logic is, if you have too much potassium, calcum or sodium it can cause more damage (or worst) so best kept alone. Given that most of us do not have enough magnesium due to the food we eat and given low cell magnesum causes heart electrical problems and given too much magnesium is not that bad for you (it will make you spend more time on the toilet), its well worth trying a magnesium supplement (not oxide as it not easily absorbed). If you do not have a magnesium deficiency then it will not help but if you do then it will help somtimes massively but to get the magnesium fully in your cells may take around 6 months but it will start improving your condition after a few days (maybe weeks).

A good balanced diet will provide all the electrolytes you need. What does have a significant effect on your electrolytes is the chemicsals in food, alcoholic drinks, sweetners et al, water will help dilute the damage but chemcals and low iron levels are often the cause of depleted electrolytes. Its also worth knowing that magnesium is not always easily absorbed and need a level of stomach acid (so may be difficult if you on any acid inhibitors) and also different people will absorb different types of magnesium better, so a bit of trial and error to get the right type for you. I found an epsom salts bath using at least twice the quantity is good, again no scientific prof of this and as the magnesium in epsom salts has molicules larger than can be absorbed by you skin there is little logic to it - but it does work for some.