Generally, I try not to read too much information when it comes to aortic dissection in Marfan Syndrome. It scares me too much because it reminds me that it does happen and that it can be fatal, and I don’t want to die. I know that the odds are generally in my favor, it’s not like having MFS is a death sentence anymore but I’ve heard some very real horror stories and I don’t live in a good area with a hospital that could quickly save my life in such a case. When I read about the life saving surgery and the fact that it can leave one paralyzed, or that it can cause heart attack or stroke, I can’t help but be terrified and feel reminded that
survival life is never a given.
I also have a hard time entrusting something as important as my life to another person (doctors). There’s always a fear and a possibility that mistakes are being made in one’s care, after all, they are only human and there’s good and bad ones in the medical community just like everywhere else.
The reason that this is on my mind is because I’m considering going off of the beta blockers. I would think that it’s okay because it was my own initiative that got me on them in the first place (my heart rate was becoming increasingly high, not good for someone with MFS, beta blockers slow the heart down) but I’m trying to do all of the research that I can before making that decision. I’ve been on them for a little over 4(?) months now and I think that they’re the cause of my unbearable exhaustion and sleepiness. I have to nap multiple times a day now, sometimes even only 30 minutes or so after waking up in the first place. When I’m not sleeping I seriously wish that I was. The odd thing is that I still get insomnia a lot. I’ll be so tired that I can’t keep my eyes open during the day but when I do try to sleep I still can’t a lot of the time. My exercise tolerance has also decreased in a huge way. Getting my heart rate up to 100 takes as much effort now as getting it up to 160+ did before. In the end I guess that doesn’t really matter, I’m supposed to keep it 100 and under when exercising anyways to protect my heart. It’s kind of depressing but necessary.
Since starting them sometimes I’ve caught my resting heart rate as low as 48. I haven’t panicked about it or gone to the hospital. mostly because usually when that happens I don’t feel much worse than compared to usual. Generally my pulse has been at around the mid to low 60s, sometimes the high 50s.
Anyways, I’m nervous that were I to go off of them that it would be a huge and possibly dangerous mistake. I’d feel better about it if my next echocardiogram/cardiologist appointment wasn’t so far away still (April). From what I do know, with my aortic root size, it should be fine (as long as my resting heart rate doesn’t go back to being way too high), but I need to be sure. Talking to my gp about it seems pointless because she knows less than I do about the subject, she even forgot why we decided to start them in the first place (she thought it was high blood pressure when mine’s always been low), I could call the cardiologist but I haven’t met him yet (he’s my new adult one instead of my children’s hospital one) so I don’t know if he could make an accurate decision before our appointment.
If anyone has an opinion or more information on this subject I’d be happy to hear what you have to say, if you’d like to email me at firstname.lastname@example.org or comment here I’d really appreciate it!