Every morning I wake up and can’t believe how well I’m doing. I’ve taken to sleeping with a comforter again, which is something I haven’t done in over a year and a half. Even many of the more minor features of my EM have lessened or disappeared. I’ve wondered a lot what it is I did – or am doing – that has caused me to improve. For certain the Mexiletine has helped, but there has been further improvement lately unrelated to any change in my prescriptions.
When this first started for me, my strategy was to throw the kitchen sink at it. My gut told me there would be a narrow window of time where it could be turned back. I’ll never know for certain, but I think my earliest intervention – asking my hematologist for a series of phlebotomies – somehow disrupted it. While it certainly wasn’t a cure, the phlebotomies did cause improvement and my symptoms never quite returned to the intensity displayed before they were performed. After that we moved to pharmacological interventions and I got real lucky with Mexiletine.
It just makes me excited. Most of the time I feel like a normal person again. Maybe nothing I did or am doing made any difference. Maybe the type of EM I had would have naturally gotten better on its own. All I know for certain is I wake up and can’t believe it.
Carter - Your update gives us precious hope. Sometimes I think about all that I would do if everything went back to normal. Don’t take it for granted! Get out there and LIVE! You are a rare, positive example that sometimes things can get better in the end. God bless
Did withdrawing verapamil improve symptoms? I take propranolol, though not for high blood pressure, and find it to be modestly beneficial for EM. Together with mexiletine they provide near universal symptom blocking. I’ve taken them since 2015.
Considering your age and that you take medication for hypertension, it’s extremely unlikely your doctor will write you a prescription for mexiletine. Since it comes with a black box warning about an increased mortality risk, most doctors are unwilling to write the prescription even when a patient is young and has no CAD risk factors. Your doctor will likely reject any query about mexiletine out of hand.
It might still be worth asking about if you’ve tried an extensive list of treatments without success and are having symptoms severely impact your quality of life. The black box warning is based on something called the Cardiac Arrhythmia Suppression Trial (CAST). There is uncertainty over whether the CAST results extend to populations without a ventricular arrhythmia and recent myocardial infarction.
That said, if you have CAD (I don’t know if you do), your doctor likely won’t prescribe mexiletine to you under any circumstance. The black box warning for mexiletine is below.
Thanks for the info. I have a short in my heart that can’t be repaired. But I’m going to ask if there is another sodium channel blocker I could take. Fingers crossed but that’s nothing new. I’ll find a fix some day I hope.
