Beta Blocker Decisions

I wrote here about my last cardiology appointment and how my doc left it up to me as to whether or not I wanted to start beta blockers now or later, saying that he couldn’t really recommend I go one way or the other. Now, for those of you who don’t know, beta blockers are used in cases of Marfan Syndrome, in order to lower the heart rate, therefore decreasing the amount of stress put on the aorta, with the objective being to postpone heart surgery longer and to make the chances of aortic dissection lower. At the time, because my aorta is still fairly stable and because beta blockers can cause many highly unpleasant side effects (which with my medication history, I’d be very likely to pick up) I made the decision to stay off of the beta blockers for now. This was not carelessly decided mind you, I did a lot of research and spent many hours discussing and contemplating my choice. And of course, I’ve often wondered if that was a reckless or stupid decision.

This was back a few months when on average my resting pulse was always in the 60s and my blood pressure usually around 110/70.  And while my blood pressure hasn’t changed at all, my heart rate certainly has. Now it’s usually 100, often spiking to and staying at 120 – which is the recommended maximum limit for those with MFS who are not on beta blockers. This is very odd for me, nothing’s changed in my eating and exercising habits, caffeine intake etc. But it has me worried that I should definitely be on the beta blockers now. I was thinking of giving it a few more days and continually checking both my heart rate and blood pressure on the at home monitor we have, to see if anything happens before making an appointment with my GP. But this has been going on for a few weeks now and it doesn’t seem ready to quit.

I wish my cardiologist lived closer, right now he’s 8 hours away. My GP is good but she doesn’t know MFS the way he does. I don’t want to be stupid with my life, but I also seriously don’t want to deal with the monstrous list of effects that beta blockers can have on you, like, for instance, zapping all of your energy and making you feel tired all of the time. And headaches, I certainly don’t need help getting those, I do just fine all on my own.  I’m really struggling already and don’t know if I could keep any more fight in me if it got any worse. And for some silly reason, I feel like being put on beta blockers would be a huge negative turning point – like another notch in my “look what Marfan Syndrome is doing to me” belt.

What to do?

5 thoughts on “Beta Blocker Decisions

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  2. Pingback: An update of sorts. « Connective Tissue Disorders: My Journey

  3. Hi Katie,

    I’m 34, have Loeys-Dietz (from 1988-2005 was diagnosed as Marfan), and live in Virginia. I’ve been following your blog for awhile now (it showed up in a search for sites that mentioned Loeys-Dietz), but wanted to say hello and give you my two cents about beta blockers. I’ve been on them since I was 8 years old at varying doses over the years. Even with them I’ve still had three open heart surgeries, so they didn’t do much for me there, but they did delay them a bit.

    When I was diagnosed with Loeys-Dietz in 2005, they found 9 aneurysms in my body (including four in my brain). Within six months I started on a new treatment plan focused on the drug losartan, which is not a beta blocker. Losartan has become the gold standard of medications for those with Marfan and Loeys-Dietz. And it has apparently worked miracles for me. Not only have my none of my aneurysms grown, I actually don’t have as many now as I did seven years ago. I think I’m down to five total, but I stopped paying attention to how many there are – it was just depressing me and as long as they’re stable, I’m fine with not keeping count.

    I still take a beta blocker on top of the losartan, but that’s because of my constant arrhythmia. I don’t really attribute tiredness with taking it (I’m tired for other reasons). And as to your worry about headaches, I know there is medical research showing that beta blockers are being used successfully to treat people with migraines – so while they may cause them in some people, they help others.

    I don’t want to come across as saying everything’s just grand, because it’s not. I have migraines 4-5 times a week, I have pulmonary hypertension and barely ever leave the house because I have zero energy, deal with generalized pain (not as severely as you, though), and probably not surprisingly, I have chronic depression and anxiety problems.

    I just wanted to reach out and let you know that you’re inspiring me with your honesty here on the blog and your activism – that was so cool that you spoke to the Pain Conference. Beta blockers, like all medications, take some getting used to (and there’s always the hope that they will help), but I would really bring up the idea of taking losartan (if you’re not already) with your cardiologist, perhaps with the beta blocker if they still want you to try it.

    Take care,
    Ed

    PS Feel free to email me if you want more details or just need to vent about the crap we go through.

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    • Thank you for your comment! I wrote this post hoping someone would write me with their opinion and experience, the more I know the easier it is to make a decision and sometimes I feel so lost in my small town without access to specialists. I am definitely aware of the studies being done in regards to Losartan, my cardiologist as of right now suggests a beta blocker instead saying that so far the studies don’t show any significant improvement in the treatment of aortic root dilation with Losartan compared to say Atenolol, which was not what I had been hearing or what he had said the time before that. But, because I’ve personally heard wonderful things about Losartan I am always considering it and keeping my eye on the study.

      Three open heart surgeries! I hope they went well and weren’t too painful, I find the thought frightening.

      I’m very glad that you wrote me. It’s always wonderful to receive feedback like yours. And I might just take you up on your email-vent offer. The same applies to you, feel free to email me whenever! :)

      Take care,

      Like

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