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Persistent PVCs following LongQT episodes
In 2008, I passed out in bed. I was diagnosed with Long QT syndrome and deemed high risk, so put on beta blockers and had a defib. implanted. Everything was fine for some time. Until Nov 2013, when I started to pass out brushing my teeth - the defib fired and saved me, but over the next months I had increasing energy issues, intense fatigue, shortness of breath, and chest pain. In March 14, they diagnosed intense PVCs, but we kept searching for other contributing issues. In June 14, we did an ablation. I felt normal immediately, it was awesome. Then in Jan 15, I passed out in the shower - again my defib saved me. Immediately, we tested for PVCs and found a lot. I had another ablation in March 15. Even in recovery, PVCs were showing up. I feel maybe 75% better - there are good and bad days. Sometimes the bad will last a week. Same symptoms as before, fatigue, some dizziness, shortness of breath, chest pain, the sensation of millions of butterflies beating against the inside of my skin. We know I'm still having PVCs but are looking to see if anything else is at play before upping meds (which has turned me into a zombie in the past). We're stumped.
A rogue symptom is uncontrolled twitching. This has happened twice. Once in the ER in Feb 14, where it almost a severe ticking movement (head coming forward, arms waving) that lasted most of the night. Then a week or so ago, as I was falling asleep. It seemed like there were "flashes" of energy in my arms, legs, torso (all individually) that would be immediately followed by a large flail.
We have not explored the twitching, as it has not appeared much and didn't fit our scenarios. Could it be important? What might we NOT be thinking of?
A rogue symptom is uncontrolled twitching. This has happened twice. Once in the ER in Feb 14, where it almost a severe ticking movement (head coming forward, arms waving) that lasted most of the night. Then a week or so ago, as I was falling asleep. It seemed like there were "flashes" of energy in my arms, legs, torso (all individually) that would be immediately followed by a large flail.
We have not explored the twitching, as it has not appeared much and didn't fit our scenarios. Could it be important? What might we NOT be thinking of?
If you are on FB, there are some excellent support groups for those with LQTS - you might consider joining one of them and asking if anyone else has experienced something similar.
Did your ICD pick up Any arrhythmia's during the twitch sessions? Ay ther symptoms? I wonder if this might have a neurological basis.
Did your ICD pick up Any arrhythmia's during the twitch sessions? Ay ther symptoms? I wonder if this might have a neurological basis.
Oh gosh, you have been through a lot. I honestly don't have any solid advice to give you but sending you strength and hope that things improve.
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