Hi all ,
Just joined , I have an inherited faulty gene ( not Levi's ) that can when activated cause A/F.
A few of my family also have this gene , a couple have activated and have had a small defibrillator
fitted to manage the AF if it should re occurs.
Cy
I was born disabled . But didn't get my diagnosis until I was 63 in 2022 and only because my new neurologist had my whole genome genetically tested. I move from the black country to the north west 5 years ago . Was under a neurologist but he only did electronic tests that I had done in 1992. He could have had my blood genetically tested and put me on Clonazepam but didn't.
Saw my new neurologist January 2020 he didn't know what was causing my limbs jerks which I had from when I was 29 and even did them in my sleep and had 4 seizures which took my speech for hours . Seizures lasted 8-10 hours. He prescribed the Clonazepam and within 2 weeks my limbs where still and no seizures. And still are even though had to double my dose last year due to my legs feeling like I had planks attached to them and couldn't bend my knees walking. My blood was sent to Cardiff 2020 but due to covid didn't get the results until March 2022. I have the rare hereditary Hyperekplexia gene mutation SLC6A5 type 3 . Which is a mutant gene in my brain receptors which effects my limbs and other things.
March 2020 saw cardiologist due to showing heart failure in blood test. After echo and bubble echocardiogram in 2020.then MRI in 2021 found out have a small hole in the side of my heart I was born with . The chambers between the chambers of my heart are intact and strong heart function. I have PAF on Flecainide and Apixaban plus Ramipril which I have been on pre 2017 . Am on a general painkiller and one for nerve pain .
Just been diagnosed as having Osteopenia after a bone scan.
I have want is called a startle reflex when triggered my limbs stiffen and sets off my PAF if it's a bad startle. If standing up.I fall like a tree am conscious,if sitting down I can't move.
This happened about 7-8 weeks ago I was sitting in my armchair looking at the garden . Heard a loud bang which made me stiffen then a loud cracking as the outside panel of my window in my living cracked from top to bottom. It set my PAF into overdrive and got very breathless. I was frozen as I watched the glass cracking. After about 10 mins I could move as my limbs loosened but my heart was in overdrive and had problems catching my breath. But I don't panic as I know what's happening and I will be ok eventually. I phoned my daughter but could only say window. She came straight away . Had some water and she made me laugh which got my heart back into rhythm and some deep breaths my breathing went back to normal.
It was the outside which cracked . My window guy came within half hour and for my peace of mind after measuring for new panel put at very sticky film on the cracked glass so it wouldn't fall out. New pane fitted 3 days later.
He said double glazing can last forever or a pane can crack doesn't know why it just does. Few weeks before a blackbird hit my kitchen glass panel in the door as it was being chased by a magpie broke it's neck but never marked the glass.
Sorry it's long winded but nothing is ever simple with me 🤣
Is that a response to the post above it or a report on your current state?
It was in response to faulty gene cardiac related by Inherited 1.
I know my gene mutation isn't in my heart it can set my PAF into overdrive . Plus my HPX can cause my oesophagus to spasm and have trouble breathing. Which then can trigger my PAF .
I see, that was not clear from your comment
Sorry it's how I write .
D you have a question?
Cardiac arrest 
Faulty aortic tissue valve
Cardiac arrest 
Cardiac arrest 
cardiac rehab 
