#so instead I’m playing 5 dimensional chess with my meds and interactions

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Adventures in Chronic Illness Hell: Medication edition

My narcolepsy meds—which I spent 4 months fighting insurance and my sleep doctor’s office to finally get approved, and which revolutionized my sleep and gave me some semblance of my former life back—cause tachycardia and high blood pressure, and a host of other frustrating related symptoms.

Taking propranolol to lower my heart rate and blood pressure just makes me horribly dizzy and light headed and gives me non-stop headaches, so I can’t do anything but sit on the sofa. (And it doesn’t lower my blood pressure.)

I have one more thing I can try to make the narcolepsy med work. Because of hEDS, I don’t metabolize food or medication correctly, so if the high heart rate and blood pressure are caused by my metabolizing issues, then starting this new med has a chance of fixing those things. But, I learned the hard way that I have to make other med adjustments first; I tried the metabolism med without other changes and learned 1. It works, because 2. Suddenly I was metabolizing all my other medications, because I managed to get all side effects of all of them at once, which almost landed me in the ER.

So, I am currently off my narcolepsy meds (and dealing with sleep attacks and debilitating fatigue) so that tomorrow I can go off some of my MCAS meds and try the metabolism med, so that I can ultimately try the narcolepsy med again and hope the high heart rate and blood pressure go away.

If that fails, then I will have to spend the next several weeks trying to convince my sleep Dr and insurance to let me try one of the other nighttime narcolepsy meds, in which case I will be desperately hoping that they don’t cause anaphylaxis, the way that over half of the meds I have ever tried do.

I fucking hate this.