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This is a continuation of my previous post that I thought may warrant it's own thread.
(TLDR for linked post for context: my partner with very severe ME had a bad reaction to LDN that seems to have put their sympathetic nervous system into overdrive for the past two weeks, despite stopping LDN.)
Despite being 100% bedbound (not even able to sit up) they are having similar symptoms to OI dysautonomia- racing/pounding heart, faster breathing, tension/squeezing headaches, overheating, uncontrollable shaking, a "vibrating" feeling (increased adrenaline), plus massive mood changes including a near constant feeling of panic, terror, despair, anger. They've been unable to rest and sleeping has been a challenge. After ruling out inflammation or a Herx reaction (after trying to treat those made no difference) we figured it's their sympathetic nervous system in overdrive.
Over these two weeks we've tried several things to reduce and calm the sympathetic overactivity, which have each mildly helped: increased magnesium, B12 and B-complex, L-Theanine, pharmaGABA, CBD oil, vagus nerve stimulation, valerian root tea.
It was also causing dehydration so we added salt tablets, electrolytes, and more water/juice intake. It was also making it much harder to fall and stay asleep (the symptoms would wake them frequently), so we alternated using melatonin, zopiclone, diphenhydramine, promethazine, and diazepam, plus nightly L-Theanine, valerian root, magnesium glycinate and CBD.
I say all this in the past tense, as for the last two days it seems like the pendulum has swung the complete opposite way and the parasympathetic nervous system is overcompensating for time lost. They have been falling asleep at the drop of a hat, massively fatigued and weak, their heart rate has gone below their baseline, and their breathing is weaker. They also seem to be having some gastro-intestinal discomfort (non-stop stomach churning and growling), which I'm guessing is the parasympathetic now boosting the "rest and digest". The sympathetic has still been occasionally flaring up too for a few hours at a time, before going back to the fatigued state.
I'm hoping the recent change is their body balancing itself out, and the parasympathetic will calm down too once it's repaired the damage the sympathetic did. However it's still as unpleasant for my partner as the sympathetic increase was, so hard to see it as a good thing. I have some things that could boost their energy more but I don't want to swing them back to symp overload.
How can I find a good balance between the two, or should I leave their body to figure itself out? Any clue how long this will last, or if this is unusually long considering that the affecting factor has been removed? I estimated it would take three weeks to recover to their pre-LDN-reaction state, but we're coming up on that soon- was it a reasonable guess? Am I understanding correctly how the ANS works? (I was never a big biology fan at school....)
(TLDR: partner's sympathetic nervous system was in massive overdrive for 2 weeks. Some treatments helped a little. Now in complete opposite state of parasympathetic system working overtime. Unsure if the recent change is a sign their body is balancing itself out, or a sign something is still wrong.)
(TLDR for linked post for context: my partner with very severe ME had a bad reaction to LDN that seems to have put their sympathetic nervous system into overdrive for the past two weeks, despite stopping LDN.)
Despite being 100% bedbound (not even able to sit up) they are having similar symptoms to OI dysautonomia- racing/pounding heart, faster breathing, tension/squeezing headaches, overheating, uncontrollable shaking, a "vibrating" feeling (increased adrenaline), plus massive mood changes including a near constant feeling of panic, terror, despair, anger. They've been unable to rest and sleeping has been a challenge. After ruling out inflammation or a Herx reaction (after trying to treat those made no difference) we figured it's their sympathetic nervous system in overdrive.
Over these two weeks we've tried several things to reduce and calm the sympathetic overactivity, which have each mildly helped: increased magnesium, B12 and B-complex, L-Theanine, pharmaGABA, CBD oil, vagus nerve stimulation, valerian root tea.
It was also causing dehydration so we added salt tablets, electrolytes, and more water/juice intake. It was also making it much harder to fall and stay asleep (the symptoms would wake them frequently), so we alternated using melatonin, zopiclone, diphenhydramine, promethazine, and diazepam, plus nightly L-Theanine, valerian root, magnesium glycinate and CBD.
I say all this in the past tense, as for the last two days it seems like the pendulum has swung the complete opposite way and the parasympathetic nervous system is overcompensating for time lost. They have been falling asleep at the drop of a hat, massively fatigued and weak, their heart rate has gone below their baseline, and their breathing is weaker. They also seem to be having some gastro-intestinal discomfort (non-stop stomach churning and growling), which I'm guessing is the parasympathetic now boosting the "rest and digest". The sympathetic has still been occasionally flaring up too for a few hours at a time, before going back to the fatigued state.
I'm hoping the recent change is their body balancing itself out, and the parasympathetic will calm down too once it's repaired the damage the sympathetic did. However it's still as unpleasant for my partner as the sympathetic increase was, so hard to see it as a good thing. I have some things that could boost their energy more but I don't want to swing them back to symp overload.
How can I find a good balance between the two, or should I leave their body to figure itself out? Any clue how long this will last, or if this is unusually long considering that the affecting factor has been removed? I estimated it would take three weeks to recover to their pre-LDN-reaction state, but we're coming up on that soon- was it a reasonable guess? Am I understanding correctly how the ANS works? (I was never a big biology fan at school....)
(TLDR: partner's sympathetic nervous system was in massive overdrive for 2 weeks. Some treatments helped a little. Now in complete opposite state of parasympathetic system working overtime. Unsure if the recent change is a sign their body is balancing itself out, or a sign something is still wrong.)
