Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Not technically on nortriptyline, but I've been on amitriptyline for a while, which the body metabolizes into nortriptyline.
I tolerate amitriptyline pretty well. Technically, these drugs aren't really recommended with POTS as they can increase the sympathetic response. I have POTS and took it anyways, it does increase my resting heart rate. No other major side effects except perhaps a minor increase in anxiety when starting or increasing doses.
What was your reason for starting it, and why are you thinking about stopping it?
That all sounds about right; it's a powerful NET inhibitor so increases sympathetic nervous system tone, and it's also anticholinergic which makes things even worse in those areas.
No, not really!
On the CellTrend test I assume?
Do you have dysautonomia like POTS or NMH? Does your blood pressure usually run normal? This gets kind of confusing because it depends on where we're talking about. I believe α1 receptors generally control vasoconstriction, so perhaps if you antagonize those receptors, you're not able to elevated blood pressure when needed hence the syncope. α2 receptors however have the opposite effect, at least when activated in the brainstem, and act as a sort of counterregulatory effect. When activated, they actually lower blood pressure, so perhaps by antagonizing α2 receptors you're causing an increase in sympathetic tone.
Bummer.
Sigh. This happens to me with every freaking med I am prescribed; first it works wonderfully, then it does not, and/or the side effects are too much.
Which is why we need a vast array of meds to chip away at and experiment with and doctors who understand what we are up against. I spent a little time with a healthy person recently who slept poorly one night and she almost believed me when I said this was my reality for many years. "I don't know how you do it,"says she. I don't know how I do it either, but I have no choice. Healthy people run for the hills even imagining such a thing. Lucky for them, they can still run!
