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

[sb4]

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?

Sorry not that I know of.

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.

I ended up pushing for a POTS diagnosis. First got seen in Sheffield then eventually got seen in London. Currently with Dr Nick Gall who is trying some meds. Also saw a POTS team in queens college London under Dr Ingle but the was mostly exercise focused and not helpful.

The way they Dx is via Tilt Table Test. I had one done in sheffield that fully fit the criteria for POTS but was instead given a Dx of Anxiety and Hyperventilation. So pushed for one in London where I stayed in hospital for 3/4 days and they did TTT and a bunch of other stuff where I finally got my Dx.

It would be ideal if you could get a Dx because then with the correct dr there will be a some meds you can try.

Grasping at straws a bit but what about something like this:
Leg air compression massager

Could help moving the blood around whilst she lays down. Some have reported improved symptoms with compression stockings that go up to the waist.

 

[Wayne]

Any ideas on treating this without restarting a sympathetic reaction?

You might want to consider a PEMF mat. I bought one recently, and use it 2-3x daily to calm my system down, but it has a gentle energizing effect as well. Helps me go to sleep at bedtime, get back to sleep in the middle of the night, and paradoxically, helps me wake up in the morning. @Mary -- Most companies offer a 30-180 day return policy, so if it didn't work, you could return it for a modest restocking fee. Here's a good introductory video on it by an Osteopathic physician.

 

[godlovesatrier]

@SpinachHands no problem. You need to email this address to get an appointment for your wife with binita kane longcovidclinic@howellmedicalgroup.co.uk

She does long covid and ME so don't let the inbox name fool you.

I think wait time is 3 months but can't be certain. She is Liverpool based. The nurse will triage you first for an hour and then it's onto binita. It's more expensive due to this format of triage but I think worthit probably to not waste time

Good luck!

 

[Mary]

You might want to consider a PEMF mat. I bought one recently, and use it 2-3x daily to calm my system down, but it has a gentle energizing effect as well. Helps me go to sleep at bedtime, get back to sleep in the middle of the night, and paradoxically, helps me wake up in the morning. @Mary -- Most companies offer a 30-180 day return policy, so if it didn't work, you could return it for a modest restocking fee. Here's a good introductory video on it by an Osteopathic physician.

Thanks @Wayne! - actually I did end up buying a PEMF device, thanks to your many recommendations, and I think it is helping with sleep. I got this one from Resona. It's very small and light, but the Gauss level is supposed to be 9, which I read is the important thing. It's more powerful than some of the much larger devices. https://support.resona.health/hc/en-us/articles/21421235322267-What-is-the-Gauss-level

I use it several times a day, just keep in my pocket. You can also wear it with a lanyard.

It has a 30-day return policy.

The regular price is $399 - if you google "Resona vibe", that's the price that will come up.

However, if you google "PEMF device", you'll see a link for the Resona vibe on sale for $249, which is what it cost me.

I've been using the immune support program, earthing program (7.83 hz - supposed to be the natural frequency of the earth) and sleep program. Each one is around 30 - 40 minutes. I don't feel anything while doing it, though the device does get warm, but overall am sleeping better. So I can't guarantee this is helping, but it's definitely not hurting me and I think is worth a try.

 

[Lena9701]

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.

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.

Hello spinachhands,
Oh my goodness what a horrific challenge you two are going through. I am so sorry to hear your partner is struggling so badly. I have spent time in a similar state myself and it is almost unfathomably hard just to get through each day. You both sound incredibly brave.

I thought I would raise the possibility of an ongoing reaction, because I haven't seen anyone else suggest it yet. I once developed sensitivities to about 90% of foods practically overnight, and it took me about 2 months to realize and do an elimination diet. During that time I had an ongoing state of inflammation which kept causing more and more problems for me and dragging me downward, until that inflammatory burden was lifted, then I leveled out and eventually started to climb upward again.

Another possibility which can have even more severe effects, also in that cumulative way, is environmental mold. Do you have any reason to think your place could have a mold problem? Especially if you moved or had a water leak in the past year it could be a possibility for what's causing your partner to have such a painful decline. Even just seasonally, a place with mold can be worse during the winter so that alone could increase the burden on their body.

Truly wishing you both some peace and rest.

 

[SpinachHands]

The thing that's stumping me is trying to figure out what is actually, biologically happening to them.

This dysautonomia, nervous system in overdrive, is going on for 95-99% of the time. But in the moments of reprieve my partner says it's like their ME has been gradually getting better underneath. Like when the dysautonomia stops for a minute, they feel like they could get up out of bed. So this isn't something consistently wrong, but something that switches on and off, so we've ruled out things like diet, environment, medications, because it also doesn't have any kind of rhyme or reason to when it happens. We've been looking for any pattern but can't see one.

It also seems like the sympathetic rarely is hyper activated and it's more the parasympathetic. So extreme sudden fatigue, muscle and joint weakness, overactive stomach activity, a pounding but slowed heartbeat, dizziness and a squeezing headache, and a general feeling of prickling/nerve "fizzing" almost throughout their body. The only predictable factor, is that strangely it gets worse after they have a good night's sleep, and is less when they've had less sleep.

I can't find anyone who's had similar symptoms in a similar way, most people talk about sympathetic overactivity and ways to activate the parasympathetic. But if their parasympathetic is overactive it doesn't seem safe to try and activate the sympathetic to fix it, so I don't really know how one would?

I really need a doctor that knows what they're talking about tbh, but it's still a month until the appointment with Dr Claire Taylor, and I'm not hopeful that the referral our GP made to the cardiologist will come back before that.

 

[pamojja]

It's very small and light, but the Gauss level is supposed to be 9, which I read is the important thing.

Never tried PEMF, but if the Gauss level is key, these have max. intensity at 25, for the same reduced price: https://omnipemf.com/shop/

However, if you google "PEMF device", you'll see a link for the Resona vibe on sale for $249, which is what it cost me.