Managing the balance between the parasympathetic and the sympathetic nervous systems going into overdrive

[SpinachHands]

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.)

 

[Hope_eternal]

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.)

I’m so sorry to hear about your partners continued struggles. I’m not sure if this is the case with ME/chronic fatigue syndrome, but I know when I had an adrenal fatigue I experienced paradoxal reactions to almost all supplements. If it was meant to calm me, it would cause me anxiety, heart palpitations. I had to stop all supplements to get my body to calm down. Even with supplements that are considered pretty benign like magnesium would cause me six hours of nausea, headaches, anxiety, bodyaches, body shivers. The only thing that helped me was meditation and breathing exercises. And complete and total rest. Slowly, but surely, my nervous system calmed down. I’m not sure if this is what your partner needs but I’m just sharing my experience. I got the most relaxation from a breathing exercise called progressive muscle relaxation.

Also valerian root mixed with sleeping aids can cause excessive sleepiness and slowed heart rate. Please look into this. Hoping things turn around for the better soon!

 

[Blazer95]

I am not an expert at all but my gut feeling goes towards your Idea of "the body is currently rebalancing"

Their system was in complete overdrive making use of every single resource in the body. So a "boune-back" would kinda seem the most logical approach here...

There is a brainfog exercise where you kinda follow your own Hands with your eyes If I remember it right but I highly doubt a fully bedbound person is capable of doing this. As frustrating as It May Sound to a Caregiver, I think the best approach would be keep their vital Parameters Like HR, BP etc checked and "wait".

Sorry I dont have more ideas.
You're amazing for taking so much care.

 

[LINE]

Any nutrient intervention?

 

[pamojja]

Any nutrient intervention?

The first which would come to my mind about who used nutrients and diet to balance the autonomic nervous system, woud the late pancreatic cancer doc Nickolas Gonzales (the following notes taken from an interview):

Dominant sympathetic types: Typ ‘A’ personalities, disciplined; mostly solid cancers; do good on much plant based foods: fruits, vegies, seeds, grains, nuts, plant based oils: hemp, flax; Vitamin B1, B2, B3, 8:1 ratio magnesium to calcium, high vitamin C & D; but not on much meat protein, no b12, no choline, no B5, no zinc, no selenium, no fish oil. Yes to beta Carotene, chromium, folic acid, riboflavin, thiamin,& niacin

Parasympathetic: types are rather creative with unconventional ‘formal’ education; mostly blood-based cancers; do good on lots of meat and a ketogenic diet, saturated fats, fats from fish oils, Calcium 10-15 ratio to magnesium (high magnesium causes depression), Vitamin B12, B5, Choline; not as good on grains or seed. Need zinc & selenium, not good with other large Vitamin B doses.

Mixed or balanced types: suffer rather from allergies and fatigue.

 

[Tammy]

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.

It is a possibility that there are now too many supplements given to reduce sympathetic overactivity or maybe the dosage for some should be adjusted especially with the prescription meds.

Also, try not to let too much time lapse between getting in some kind of healthy snack for you partner. Liver and brain need a steady healthy sources of glucose. Best to try and keep the glucose levels from falling. For hydration, 100 % coconut water preferably without anything else added is one of the best drinks for hydration and electrolytes. Because it can be expensive, I often add it to water to make it last longer.

It's all a balancing act for sure.

Sending hugs

 

[LINE]

What works for me:
1/ Magnesium -but this is difficult since there are many forms, some work better than others.
2/ Calcium - calcium is typically antagonistic to magnesium but can be lost under sympathetic stress.
3/ Copper - another involved in sympathetic stress.

4/ GABA but only under the tongue- oral delivery never worked.
5/ B2/B6 - I stay away from B12. Other B vits as needed. Choline could be a help.
6/ Vitamin C as QualiC - Vitamin C is my go-to in trouble.

7/ Lavender essential oil - works wonders.

 

[SpinachHands]

What works for me:
1/ Magnesium -but this is difficult since there are many forms, some work better than others.
2/ Calcium - calcium is typically antagonistic to magnesium but can be lost under sympathetic stress.
3/ Copper - another involved in sympathetic stress.

4/ GABA but only under the tongue- oral delivery never worked.
5/ B2/B6 - I stay away from B12. Other B vits as needed. Choline could be a help.
6/ Vitamin C as QualiC - Vitamin C is my go-to in trouble.

7/ Lavender essential oil - works wonders.

Thank you!
At the moment they take magnesium twice a day (600mg tot), but I have some magnesium glycinate that I might suggest switching to). I'll look into calcium and copper. They take GABA but it seems to give them more energy? Will look into sublingual as an alternative to oral. They take a B complex but may look into getting separates for the different B's. B12 seems to help, but I've heard B1 and B2 are good to focus on. They also take Taurine which I think is good for B1? At the moment orange juice is their main Vit C source, but I was worried their immune system was already in overdrive, so didn't want to encourage it with more vitamin C.

 

[Bluebluesky]

B12 seems to help

If b12 seems to help then you should absolutely hang on to it! And maybe read a bit into that. (The way you gather information is so impressive.) All the b vitamins are essential, for sure, but b12 can really be the key and it often is. B12 deficiency is such a nervous system wrecker.

B12 is essential for the maintenance of the protective sheet around the nerves, myelin, which is comparable to the white plastic around electrical wires. In some cases b12 can be viped out really quicky and people can get all sorts of wild reactions to that. b12 is essential for methylation which is needed for so many bodily functions, so reactions to b12 deficiency can differ widely from person to person,

I'd also say that going into separates for b vitamins is a good idea, as that can point you to what is wrong, and also in my experience separates often work way better.

 

[godlovesatrier]

@Jyoti has an apollo device which stimulates the parasympathetic nervous system I think. Anyway it sounds promising:

https://apolloneuro.com/

 

[LINE]

Thank you!
At the moment they take magnesium twice a day (600mg tot), but I have some magnesium glycinate that I might suggest switching to). I'll look into calcium and copper. They take GABA but it seems to give them more energy? Will look into sublingual as an alternative to oral. They take a B complex but may look into getting separates for the different B's. B12 seems to help, but I've heard B1 and B2 are good to focus on. They also take Taurine which I think is good for B1? At the moment orange juice is their main Vit C source, but I was worried their immune system was already in overdrive, so didn't want to encourage it with more vitamin C.

Again, everyone responds somewhat differently to substances. B vitamins seem to fit into this class. Vitamin C has always been helpful - I use a pharma grade (QualiC) which is competitively priced.

 

[godlovesatrier]

I'm finding magnesium ascorbate to be helpful.

 

[SpinachHands]

Update: my partner has been on 7.5mg Mirtazapine for a little over a week now. It does seem like their sympathetic nervous system has calmed down, but they're now in massive parasympathetic overload. They're almost paralyzed most of the day, and the reason we can distinguish it from normal ME fatigue is their stomach and digestive system seem to be on overload too- constant churning and cramping.
I've been looking but can only find treatment for an overactive sympathetic nervous system, nothing about an overactive parasympathetic reaction. Any ideas on treating this without restarting a sympathetic reaction?

 

[Hope_eternal]

Update: my partner has been on 7.5mg Mirtazapine for a little over a week now. It does seem like their sympathetic nervous system has calmed down, but they're now in massive parasympathetic overload. They're almost paralyzed most of the day, and the reason we can distinguish it from normal ME fatigue is their stomach and digestive system seem to be on overload too- constant churning and cramping.
I've been looking but can only find treatment for an overactive sympathetic nervous system, nothing about an overactive parasympathetic reaction. Any ideas on treating this without restarting a sympathetic reaction?

I did a quick search and it looks like the Vegas nerve is greatly involved in the parasympathetic function, per this article I found.

https://www.healthline.com/health/parasympathetic-nervous-system

“ Vagus nerve. An estimated 75 percent of all parasympathetic nerve fibers in the body come from this nerve”

Maybe some Vegas nerve exercises could help? There are many tutorials on YouTube. You might want to look at them to see which of them your partner might be able to try. Some exercises are humming or gargling, massage to head or neck, ice pack to neck etc.

 

[godlovesatrier]

paralysis - mirtazapine turns me into a total zombie @SpinachHands - your partner is so sick I suspect she's suffering from mirtazapine sides not some sort of ME symptom/reaction, just to clarify. Mirtazapine if I take the normal dose I can't even speak to people the whole day afterwards, brainfog is off the chart and I am unable to really do anything at all, until about 8pm.

Now these symptoms are only supposed to last 2 to 3 weeks before stopping. But if they don't, might not be the drug for her.

Sorry you're having to deal with this also, sounds so stressful.

 

[SpinachHands]

Update: things are only getting worse and I don't know what to do.
My partner is off the mirtazapine now. After 2 weeks on 7.5mg and no change the GP recommended going up to 15mg and over that week they just seemed to get worse. Not like side effects, but like it was making all of their symptoms worse. So my partner went back down and is now off. The GP has no clue what to do, and is barely able to do anything. She keeps insisting on doing a home visit and blood test but my partner says no, they're not taking the risk that it will exert them unless she has some idea of what she's even looking for, which she hasn't been able to. I'm speaking to her today and am going to push for an urgent referral to a cardiologist I found at our local NHS hospital that has a special interest in autonomic disorders.

To run back over their symptoms:
Sympathetic overload is constant, with their heart pounding hard, and a "vibrating" feeling all throughout their body that prevents them from resting, a squeezing headache, and high temp. Sometimes it becomes more intense, for hours at a time, where their heart rate will go much higher, they have abnormal heartbeats, higher temp, an adrenaline/panic feeling, full body shaking/muscle spasms, and faster breathing.
All the time that it's not at this intensity, it's like their parasympathetic is in overload, with intense fatigue to the point of barely being able to move or speak, muscle and joint pain, a restless/churning stomach, sinus pain, and brain fog. This can last hours or all day.

They've had no break from these symptoms for about two months, more than half the time they've been bedbound now. They just want to go back to when they could lie there, and think, and rest, but this is torture that no medical profession I speak to seems to have any sense of urgency about.

We've tried the diet, supplements, vitamins, breathing exercises, vagus nerve stimulation, but nothing is making a dent. The GP can only prescribe antidepressants.

My partner doesn't know what to do, they can't do anything but bear it until I can find someone or something to help. And I can't. Just any advice, for them on how to cope and bear this, for what might be wrong with them, for me to make someone help us, we really need it.

 

[godlovesatrier]

The only advise I can give is to get to specialist drs. You've got Dr binita kane in Liverpool treating me and CFS. She can prescribe triple therapy amongst other things.

Dr Claire Taylor who will prescribe meds for autonomic syndromes.

Dr Bansal who can prescribe valtrex.

You really need all 3 in my opinion :/ of course that's £2000 right there.

Hard to know who to tell you to focus on. But Claire Taylor is fully telemedicine so that's my advise I think.

 

[sb4]

@SpinachHands When I was at my worse 8yrs ago the heart pounding was close to unbareable. I had no Idea what was causing it at the time only that it was worse when I stood up, exerted myself, or ate.

At this stage I even had 3 instances of heart attack like symptoms, 2 of which I had an impending sense of doom where I felt like I was going to die.

It was around this time of year too. If her problems were like mine then I would recommend keeping her cool. Heat causes vasodilation which makes everything worse. When it was playing up a lot I would open my window at night and sleep without covers, I would be so cold I couldn't sleep but with the cold comes vasoconstriction which allows the blood to flow easier.

Perhaps try thiamine, bit of a long shot but carbs absolutely made my heart pounding post meal massively worse to the point that it made me feel like all the blood was draining from my head. Probably something to do with poor blood flow causing glucose to build up in blood. Thiamine helps use up the glucose. There are quite a few success stories on dysautonomia forums with thiamine. For my it knocked me up a level when I was at my worse but nowadays it doesn't do much. Relatively cheap to try. Lipothiamine is best but regular thiamine high dose could also work. I notice you say you've taken b complex but perhaps that was too low of a dose. If I remember right you're talking like 2g thaimine hcl. Less for lipothiamine.

I also took mirtazapine 7.5mg around this time and it did help me stand and things but it came with its own side effects. Gladly I got off it a few years ago.

The problem I found with things like CBD Oil and stuff that help you relax is the it makes the heart racing so much worse. Presumably due to vasodilation. I took CBD oil for a few weeks and it first I noticed maybe feeling a little better but it wasn't long before I started feeling noticeably worse with my POTS symptoms.

 

[SpinachHands]

The only advise I can give is to get to specialist drs. You've got Dr binita kane in Liverpool treating me and CFS. She can prescribe triple therapy amongst other things.

Dr Claire Taylor who will prescribe meds for autonomic syndromes.

Dr Bansal who can prescribe valtrex.

You really need all 3 in my opinion :/ of course that's £2000 right there.

Hard to know who to tell you to focus on. But Claire Taylor is fully telemedicine so that's my advise I think.

Thanks for recommending Dr Kane, I'd not heard of her before and she seems to put out some useful resources. I can't seem to find a way to be referred to her though, I think she is an NHS consultant but may only be available through local services which we're not in the region of unfortunately. I couldn't find any private options for her.
I'm hopeful for the appointment booked with Dr Taylor, that's coming up in June so fingers crossed for that.
And I've looked into Dr Bansal before but his wait list is about 12 months long from what I've heard, and I don't know how much he'd be able to help where my partner isn't able to be examined or attend any appointments in person.

 

[SpinachHands]

It was around this time of year too. If her problems were like mine then I would recommend keeping her cool.

Yeah my partner overheats very easily and is nearly always running hot, even over the winter they've been in shorts and t shirt, and often need me to run a cold flannel over them, or leave a frozen flannel on their chest or head. It can end up slowing their heart rate down, but helps when it jumps up too high.

There are quite a few success stories on dysautonomia forums with thiamine.

I think we tried them on B1 about a month ago, but they seemed to have some flushing from it, worsening their overheating, so stopped it. Is there any good way to counteract that?

I'm sorry you experienced cardiac issues as well, did you manage to see a cardiologist for it? I've just asked their GP for a referral but she said they won't do home visits or anything remotely which is surprising, and disappointing.