Hi, this is my first post to this site and I think it's great to be able to connect with other people that have the same condition…
I have had this for about 16 years, many cardioversions and three ablations (all failed)
I have read an interesting article or actually YouTube about a case of persistent AF and the success of using CBD oil… Has anyone tried this ?
Cheers
communitybasedispensary.org...
Thank you for posting this, but I couldn't follow what the man in the presentation was saying. He was using acronyms and words I had never heard of and I don't know if it's my hearing but appeared to talk quickly and mumble a lot. Such a shame as I may well have found this extremely interesting.
Jean what they are talking about, as far as I can understand, is the ability to identify certain genes which run in families to indicate which drugs would be helpful to a patient.
The original work was done on patients with epilepsy where identifying the right drug is important.
The rest is too complicated because it is the how they did it - which unless you want an instruction manual I would pass over! This is lab scientist talking to other scientists.
What was is of interest is the gene which opens calcium channels which was indentified in the family, some of whom had some early signs of AF and for whom calcium channel blockers didn't work as it gave patient bradycardia they looked for alternatives to ablation.
Hence the use of a particular type of CBD - which produced SNR - in this instance.
Sounds very promising but very experimental to me. Noted the caution of peppermint which they said was pro-arrythmia. Going to avoid that for a while then.
NB - the caution at the end - "this does not imply a remedy for all AF patients".
As CBD is not easily available in UK and the components of the oil are critical to efficacy, I don't think this will be accessible for us any time soon.
CBD oil is legal and easily available online in the UK. Search for LoveCBD. I asked my cardiologist about it and he didn't think it would have any affect on AF good or bad. I take it for knee and ankle pain for which it is very effective. Also makes me feel remarkably calm. It is difficult to find out what is a suitable dose and after the pain has gone I stop taking it. Pain usually returns three or four weeks later so I go back on it. Has lots of beneficial affects but is not the magic wonder-drug as often described on the web.
I've read a lot about its use in cancer patients, but not with AF. Are you able to post the link to this article on YouTube as I'd really like to read it? Many thanks.
Jean
"this does not imply a remedy for all AF patients".
See my resonse above - interesting, promising but very experimental.
My son and I joined prof Kirchhoff's research trial last week. He is looking at tailoring treatments to genes. As my son doesn't respond to fleccainide and has required cardio version and ablation yet I do respond to fleccainide, I guess it may not be so clear cut. We were interesting subjects for him as my mother and grandmother also got AF at relatively young ages.
Would love to hear how you and your son get on in this trial, would you please let us know.
My mother had AF and my cousin has it too. I believe my daughter, brother and sister have it too but they have never been diagnosed and all get racing heart rates. I've given up advising them as they'd all rather bury their heads in the sand.
Many thanks and wishing you both well.
Jean
That sounds familiar! I dont understand why my sister wants to bury her head in the sand. Hey ho. X
Jean
Sounds like there is a pattern in your family too.
I don't think I asked enough questions before we went... I thought the research was along the lines of the gene therapy that's taken place for heart failure ( which prof Kirchhoff told me has not been successful). What he is trying to do is tailor current treatments to the right patients as he believes different genetic make up will respond to different treatments. As part of the research we had blood tests, ecg and echo, plus questionnaire. It's all then anonymised and we will be followed up in two years. He thought he'd have answers in 2-5 years. I thought it was be genetic in my family with four generations having had AF, although we've all had different journeys with it. So I don't think any answers in near future, and no new treatments, but maybe the best treatment at the earliest opportunity... but as mentioned earlier, my son and I respond differently to fleccainide, so who knows!
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