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Dysautonomia and LEMS
I was diagnosed with dysautonomia and POTS (Postural Orthostatic Tachycardia Syndrome) about six months prior to my LEMS diagnosis because I was experiencing severe issues with my Autonomic Nervous System. Most of my LEMS symptoms are autonomic in nature including severe acid reflux, POTS, inappropriate sinus tachycardia, and little to no sweating/heat intolerance. I have to take Protonix daily to ensure that my acid reflux is in check. I also take Propranolol and Corlanor (which has been a godsend!) to keep my heart rate down to a normal level. Before I was taking both of these medications, my resting heart rate was in the 160s and my exercise rate was over 200! Thankfully, most of my symptoms are now managed with medication and I am known to carry my bag of medications everywhere I go because If I have one missed or late dose, chaos ensues.
What issues do you experience related to your Autonomic Nervous System and how do you cope with them?
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4 Replies
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Interesting to hear your autonomic nervous system issues, Ashley. I have had a few sinus tachycardia episodes which have pushed me to the ER over the years. I always chalked it up to the ANS run amuck. Now, with an arrhythmia in the picture, it muddies the cause somewhat as things complicate. I’m curious about controlling that excessive HR you report. Blood pressure is an issue for me and I’ve been on a beta blocker for years to hold my rate down. I understand now, beta and calcium channel blockers are contraindicated for LEMS. You mention Propranolol and Corlanor to control rate. Do I need to consider one of these, in your opinion? My BP’s are running high and we will need to address this soon with a med change.
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Hi Price,
Sinus tachycardia can be attributed to a few things, so I don’t want to give you medical advice without knowing the full picture. Dehydration can also cause sinus tachycardia, so you really want to make sure you are well hydrated, especially with having ANS issues. My neurologist recommends I drink 3L of water a day and to consume high amounts of salt for my POTS, but since I don’t know your full picture, I don’t want to recommend anything aside from consulting with your cardiologist and/or neurologist first. Yes, I have also been told beta blockers can exacerbate LEMS issues, but for me, the benefits of taking a beta blocker outweigh the risk, and I do not feel it exacerbates my LEMS. Of course everyone is different. I don’t have an issue with my blood pressure, my blood pressure is often pretty low actually even before being on a beta blocker. Corlanor is a great medication to try if you are having constant sinus tachycardia because it works directly on the “funny channels” in the SA node to lower your rate, but it doesn’t affect your blood pressure much, so it may not be the best choice for you. Corlanor is usually recommended only after you have tried the “maximum” dose of a beta blocker and is used off label for POTs/Sinus tachycardia. If you are having issues with sinus tachycardia and/or hypertension that is frequent, I would definitely suggest consulting with your cardiologist and seeing what works for you! Sometimes you may have to trial a few things before you find the best solution!
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Ashley, Thanks for your insight on Corlanor, and your thoughts on a beta blocker. I too am very careful to not offer “medical advice” on social media, because we each have such a unique set of issues, meds, etc. I have never felt my beta blocker was an issue with my LEMS, and I’m currently on 12.5 mg BID, half the dose I’ve been on some time ago. And as you mentioned, one has to weigh the benefit vs risks. I will discuss beta and calcium blockers with my neurologist in a couple of weeks. And, I’m also under the care of cardiology so we should make informed decisions soon on BP and my arrhythmia. Thanks for your feedback!
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Price,
Your welcome! I’m happy to help! I would definitely bring up Corlanor when you go back to cardiology. I did have to have prior authorization for it because it is pricey,but it was definitely worth the trouble. The manufacturer also offers a prescription savings card to make it affordable for it’s patients.
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