Start of decline/PEM: How is it for you?

judyinthesky

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I have this thing in my ME history that every time that I start to decline (not a crash but a long term one) that it starts with intense physical panic. Out of the blue, not related to my personality, and unexpectedly.

That is usually followed by a period of aggressive resting, after which I have to accept a new baseline.
It can be a quick or long process.

Can anyone relate?
I was thinking it somehow also relates to the adrenaline surge concept that allows patients to run on adrenaline and then crash, but in a more extreme way.
https://www.hfme.org/adrenalinesurgetips.htm

One problem I have is that contrary to adrenaline surges, which are easy to identify (see the link) for me (it's when I use excitement to feel better but pay a little), these attacks are something that come out of the blue and I just can't foresee them. They are often related to physical changes in energy of my body that I cannot foresee.

Does this happen to anyone?
How does a more permanent decline show itself for you guys?
 

katabasis

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I think that the 'adrenaline surge' concept is a sound theory, though of course there are other possible explanations too. Have you tried taking beta blockers, and if so, have you noticed an effect on this phenomenon? Beta blockers would probably remove a large part of the adrenergic symptoms, but wouldn't affect other factors, such as anxiety/worry, orthostatic symptoms, fatigue, etc. unless they were downstream from adrenergic phenomena.

Personally, I haven't noticed too much difference between reversible PEM and permanent worsening outside of the latter being, well, permanent. Then again, my decline has been pretty gradual, a sort of death by a thousand cuts, so any differences may not have been noticeable anyway.
 

judyinthesky

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I think that the 'adrenaline surge' concept is a sound theory, though of course there are other possible explanations too. Have you tried taking beta blockers, and if so, have you noticed an effect on this phenomenon? Beta blockers would probably remove a large part of the adrenergic symptoms, but wouldn't affect other factors, such as anxiety/worry, orthostatic symptoms, fatigue, etc. unless they were downstream from adrenergic phenomena.

Personally, I haven't noticed too much difference between reversible PEM and permanent worsening outside of the latter being, well, permanent. Then again, my decline has been pretty gradual, a sort of death by a thousand cuts, so any differences may not have been noticeable anyway.
Haven't because my heart rate is a little too low in sleep.
But for me, I don't actually have anxiety. It only ever manifests as PEM, and always when that is the start of a permanent decline.

So how DOES PEM start for you?
I wish that for me it wouldn't be so sudden!
 

katabasis

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Haven't because my heart rate is a little too low in sleep.
But for me, I don't actually have anxiety. It only ever manifests as PEM, and always when that is the start of a permanent decline.

So how DOES PEM start for you?
I wish that for me it wouldn't be so sudden!
If you have bradycardia, then you're probably right to not take beta blockers. Has a cardiologist weighed in on that? Maybe you could take beta blockers concurrently with some other drug that stimulates heart rate through non-adrenergic means.

Another option might be alpha blockers. like prazosin or even low-dose trazodone. Alpha adrenergic receptors are probably less important than beta receptors when it comes to the physical symptoms of anxiety/panic, but perhaps they would favorably modulate your 'adrenaline surges'. Most alpha blockers are associated with increased heart rate and lower blood pressure - the former would be good in your case, though the latter might be a problem if you have orthostatic symptoms. There's also labetalol, which is a mixed alpha/beta blocker, which usually causes a net increase in heart rate, though it seems like it might be a bit chancy in your situation.

As for my PEM, my triggers usually cause an immediate reaction, a sort of vague, suffocating mental discomfort as well as a feel of physical fatigue. This blossoms over the course of an hour into a 'full' experience with flu-like symptoms, especially achy pain, worse cognitive dysfunction, and light sensitivity. In this initial stages I don't really find it harder to exert myself further, which is a problem if the initial exertion is part of something that takes up all my attention, because then I may not realize how deeply into PEM I am descending. After a couple hours I will start to get truly disabling physical fatigue, and this tends to peak after 12 hours. This timeline is typically more accelerated with milder episodes, but may last days. Even with 'permanent' worsening, I do tend to get at least a little better from the nadir, but how much better I get is not predictable from the initial symptoms.

My most frequent trigger is actually bowel movements, particularly ones subsequent to some kind of GI upset, which happens frequently for me. I'm still trying to figure out why this happens - probably some local permeability issues in the distal colon that are causing a reaction to bacteria or inflammatory components of food, though it also could be exertional (the act of getting up to use the bathroom is more exertion than most other things I do in life, at this point), or somehow related to pressure on the vagus nerve. Of course I also get PEM from the normal exertional triggers as well.
 

judyinthesky

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If you have bradycardia, then you're probably right to not take beta blockers. Has a cardiologist weighed in on that? Maybe you could take beta blockers concurrently with some other drug that stimulates heart rate through non-adrenergic means.

Another option might be alpha blockers. like prazosin or even low-dose trazodone. Alpha adrenergic receptors are probably less important than beta receptors when it comes to the physical symptoms of anxiety/panic, but perhaps they would favorably modulate your 'adrenaline surges'. Most alpha blockers are associated with increased heart rate and lower blood pressure - the former would be good in your case, though the latter might be a problem if you have orthostatic symptoms. There's also labetalol, which is a mixed alpha/beta blocker, which usually causes a net increase in heart rate, though it seems like it might be a bit chancy in your situation.

As for my PEM, my triggers usually cause an immediate reaction, a sort of vague, suffocating mental discomfort as well as a feel of physical fatigue. This blossoms over the course of an hour into a 'full' experience with flu-like symptoms, especially achy pain, worse cognitive dysfunction, and light sensitivity. In this initial stages I don't really find it harder to exert myself further, which is a problem if the initial exertion is part of something that takes up all my attention, because then I may not realize how deeply into PEM I am descending. After a couple hours I will start to get truly disabling physical fatigue, and this tends to peak after 12 hours. This timeline is typically more accelerated with milder episodes, but may last days. Even with 'permanent' worsening, I do tend to get at least a little better from the nadir, but how much better I get is not predictable from the initial symptoms.

My most frequent trigger is actually bowel movements, particularly ones subsequent to some kind of GI upset, which happens frequently for me. I'm still trying to figure out why this happens - probably some local permeability issues in the distal colon that are causing a reaction to bacteria or inflammatory components of food, though it also could be exertional (the act of getting up to use the bathroom is more exertion than most other things I do in life, at this point), or somehow related to pressure on the vagus nerve. Of course I also get PEM from the normal exertional triggers as well.
Yes I also only go to the bathroom
Thank you so much for the very detailed explanation!!

Actually I would have some Trazodone here.
Was thinking about testing it. But I am surprised that it increases heart rate, as isn't it supposed to help with sleeping? I am also a bit worried that it could be stimulating, because I am already stimulated in a very bad and strong way (bad hyperacusis, super super wiredness).
Wondering whether you have any thoughts on that?

Also I strongly feel that stimulation often leads to crashes with me. So I don't know... x
 

katabasis

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Yes I also only go to the bathroom
Thank you so much for the very detailed explanation!!

Actually I would have some Trazodone here.
Was thinking about testing it. But I am surprised that it increases heart rate, as isn't it supposed to help with sleeping? I am also a bit worried that it could be stimulating, because I am already stimulated in a very bad and strong way (bad hyperacusis, super super wiredness).
Wondering whether you have any thoughts on that?

Also I strongly feel that stimulation often leads to crashes with me. So I don't know... x
Trazodone is pretty benign as a sleep aid when taken in the 25-50 mg range. At that level, the majority of the effect comes from blocking alpha-1 adrenergic receptors and 5-HT2A serotonin receptors - at higher doses the drug's action is less specific and it starts acting as a serotonin reuptake inhibitor among other things. The alpha-1 blockade causes a reduction in blood pressure, and the cardiovascular system compensates by increasing heart rate - many drugs have this kind of effect, notably cannabis. In my experience taking up to 50 mg a night to sleep, I don't notice much of a change to heart rate, and I think in most cases it is a pretty weak effect. I brought it up because of your concern with beta blockers decreasing heart rate.

Likewise, I don't think trazodone is particularly mentally stimulating when used at these low doses. If anything, blocking the 5-HT2A receptor would reduce mental stimulation, anxiety, and depression, though again the effect is rather modest. I don't think it would treat hyperacusis per se but I don't think it's likely to worsen it unless you are extremely sensitive to the serotonin reuptake inhibition effect (again, very slight when used at low doses).

Have you gotten any explanation for your heart rate being so slow? I know for many with ME/CFS it's related to autonomic neuropathy. Cardiac arrhythmia is a rare side effect of trazodone usage, so it might be good to check with a cardiologist or something before trying it, even if there isn't that much risk.
 

judyinthesky

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Trazodone is pretty benign as a sleep aid when taken in the 25-50 mg range. At that level, the majority of the effect comes from blocking alpha-1 adrenergic receptors and 5-HT2A serotonin receptors - at higher doses the drug's action is less specific and it starts acting as a serotonin reuptake inhibitor among other things. The alpha-1 blockade causes a reduction in blood pressure, and the cardiovascular system compensates by increasing heart rate - many drugs have this kind of effect, notably cannabis. In my experience taking up to 50 mg a night to sleep, I don't notice much of a change to heart rate, and I think in most cases it is a pretty weak effect. I brought it up because of your concern with beta blockers decreasing heart rate.

Likewise, I don't think trazodone is particularly mentally stimulating when used at these low doses. If anything, blocking the 5-HT2A receptor would reduce mental stimulation, anxiety, and depression, though again the effect is rather modest. I don't think it would treat hyperacusis per se but I don't think it's likely to worsen it unless you are extremely sensitive to the serotonin reuptake inhibition effect (again, very slight when used at low doses).

Have you gotten any explanation for your heart rate being so slow? I know for many with ME/CFS it's related to autonomic neuropathy. Cardiac arrhythmia is a rare side effect of trazodone usage, so it might be good to check with a cardiologist or something before trying it, even if there isn't that much risk.
Thank you again
The hospital didn't say a word. It was found in a sleep study. Then they did a heart monitor analysis.
They never gave me any explanation.

Yes I am super sensitive to SSRI and literally anything stimulating in this regard. But I take Ketotifen and that seems to have an unnoticeable component.
 

judyinthesky

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Regarding Trazodone, I tend to be weird. They also said the same about Mirtazapine in lower dosage, and I got activated after three days on 1/8 of 30mg :)