Does your ME cause sleep inversion?

Does your ME cause sleep inversion?

  • yes

  • no

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Snowdrop said:
Hi all,

Just wanted to post something on this topic that going on for me right now.

I have been having worse sleep than usual sometimes up for 36 hours then getting fitful sleep for a few days following then crash sleep for 14+ finally days after and still feeling awful.

For years I have known about melatonin but have never used it heeding the warnings that I would read when researching on the subject. But I was so desperate after this recent and continued cycle that I asked hubby to get some melatonin at the weekend.

Only three days in but it seems to be working now instead of anywhere from 3-6AM bedtime (sometimes getting up after 4 hours and not yet asleep) I have so far gone to bed at mid-night and up at 9:30-10:00 AM.
I still wake up briefly a few times in the night.

One thing though that may be different for me and thus a reason for melatonin working (this is speculation on my part) is that I grew up taking phenobarbital all through childhood for my epilepsy. I sometimes wonder if it's actually this that is in part responsible for some of my symptoms (like the cognitive issues I have).

I'm hoping that the pills will continue to work. I have a 3mg pill and I have started with half that and have now taken a 3mg dose which has not left me with feeling groggy as some information has suggested happens when melatonin is actually not needed but I do wake with a mild headache so I will continue to monitor my dose. Some websites have suggested .3mg is a proper dose so I don't know what's going on. I hope to use it short term and then see how it goes.
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I'm glad that something is helping - hope it continues.
 
@Snowdrop You may find melatonin will still work well at smaller dosage. I started out at 1mg and reduced to half then found a quarter still helped me to get off to sleep within a hour. I tried melatonin when my ME was at moderate level and felt no negative side affects that I can remember.

Pleased to hear it is helping you. It was a good help to me too. I don't need it at the moment.
 
Thanks @Rosie

I feel utterly paralysed by all the research on so many things not being consistent or clear in their recommendations. I'm glad I did try it after all, as my lack of/timing of sleep has been an issue for a long time and was getting worse.

Thanks for weighing in. I think I will use a half dose again tonight and see how things go. Am also glad you have found that it works for you.
 
Rosie said:
@Snowdrop You may find melatonin will still work well at smaller dosage. I started out at 1mg and reduced to half then found a quarter still helped me to get off to sleep within a hour. I tried melatonin when my ME was at moderate level and felt no negative side affects that I can remember.

Pleased to hear it is helping you. It was a good help to me too. I don't need it at the moment.
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I take 1mg too as I read on a PR thread that worked for long term usevtogether with taking regular breaks of a few nights. My friend who was bringing them from the USA was told by Walgreens that the 1mg are only used for kids and they didn’t have any in stock so she had to go elsewhere.

I hadn’t considered cutting the tablet but I might give half a tablet a try to see if still effective. I don’t get any side effects I’ve been taking them for just over a year and although I still feel ME awful in the morning I’m not sedated as I was on Ami/nortryptiline (despite taking in early evening)
 
NelliePledge said:
I don’t get any side effects I’ve been taking them for just over a year and although I still feel ME awful in the morning I’m not sedated as I was on Ami/nortryptiline (despite taking in early evening)
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I never felt any sense of sedation when I woke in the morning either.

Yes, the ME is still there even with better sleep. I can't remember having sleep problems in my earlier onset years. Insomnia is more a severe PEM symptom for me.
 
Snowdrop said:
Hi all,

Just wanted to post something on this topic that going on for me right now.

I have been having worse sleep than usual sometimes up for 36 hours then getting fitful sleep for a few days following then crash sleep for 14+ finally days after and still feeling awful.

For years I have known about melatonin but have never used it heeding the warnings that I would read when researching on the subject. But I was so desperate after this recent and continued cycle that I asked hubby to get some melatonin at the weekend.

Only three days in but it seems to be working now instead of anywhere from 3-6AM bedtime (sometimes getting up after 4 hours and not yet asleep) I have so far gone to bed at mid-night and up at 9:30-10:00 AM.
I still wake up briefly a few times in the night.

One thing though that may be different for me and thus a reason for melatonin working (this is speculation on my part) is that I grew up taking phenobarbital all through childhood for my epilepsy. I sometimes wonder if it's actually this that is in part responsible for some of my symptoms (like the cognitive issues I have).

I'm hoping that the pills will continue to work. I have a 3mg pill and I have started with half that and have now taken a 3mg dose which has not left me with feeling groggy as some information has suggested happens when melatonin is actually not needed but I do wake with a mild headache so I will continue to monitor my dose. Some websites have suggested .3mg is a proper dose so I don't know what's going on. I hope to use it short term and then see how it goes.
Click to expand...
1mg is equivalent to what the human would be producing if there are no disorders preventing its production. If that gives you some direction.
Also when you get above 1mg it does not have much extra effect because once you saturate the receptors more doesn't go beyond saturation.
And if you can with under 1mg thats great but there is likely no harm taking 1mg.
 
Alvin said:
1mg is equivalent to what the human would be producing if there are no disorders preventing its production. If that gives you some direction.
Also when you get above 1mg it does not have much extra effect because once you saturate the receptors more doesn't go beyond saturation.
And if you can with under 1mg thats great but there is likely no harm taking 1mg.
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Thanks @Alvin

I'll keep that info in mind. I prefer to use as small a dose as possible. It's interesting that the sellers of melatonin sell doses as high as 10mg.

I'm wondering though if this is a reflection of how much is absorbed orally. I expect that this is an area of very little researched knowledge and may vary between different people.
 
Snowdrop said:
I'll keep that info in mind. I prefer to use as small a dose as possible. It's interesting that the sellers of melatonin sell doses as high as 10mg.
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They sell whatever peoeple will buy and the placebo effect means they can monetize higehr then necessary doses

Snowdrop said:
I'm wondering though if this is a reflection of how much is absorbed orally. I expect that this is an area of very little researched knowledge and may vary between different people.
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The 1mg includes absorption and presumably first pass metabolism from oral dosing. The actual amount required is something like 125mcg but it takes 1mg taken orally to reach a similar circulating concentration. When i had more energy and better motor control i would buy 3mg capsules and take 1/3 a night. Was far cheaper then buying 1mg tablets.
The question i have never found an answer to is there actual sublingual absorption or is most or all the absorption from swallowing. Vitamin B12 for example is not very much absorbed sublingually, its mostly absorbed by passive diffusion which requires large enough doses
 
My sleep has been quite good for the last few years thanks to doxylamine succinate. I manage an almost stable 2-3am to 9.30am.

Unless i’m awake for 3 days straight with migraine.

I’ve also managed to cut right down on napping through the day which is great until this past month where i’ve slipped back into old patterns during the passed 6 week crash.

I haven’t missed it. The cold definitely makes me worse too. Not being able to heat my flat passed 18 degrees C is a killer for me. Its forcing me back into my bedroom prison heated by an extra radiator and electric blanket.

Any time i leave the room and feel the chill it seems to knock me back further and tenses all muscles.

So sick of eyelids forcing shut through the daytime at the mo. Thats all i seem to be fighting right now, that and severe nausea and limpness.
 
Ravn said:
Maybe we should all try to sleep in a hammock, or a fancy automated rocking bed once they become more widely available
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My emphasis.

I've tried sleeping on sleeper trains between Scotland and England, and failed miserably. This was many years ago, I don't know if the service still exists. I've also struggled to sleep on cruise ships. The idea of sleeping or trying to sleep while constantly moving sounds like my idea of hell.
 
leokitten said:
I would avoid any anticholinergic medication that you take on a consistent basis because anticholinergics seriously increase your risk of getting dementia, Alzheimer’s, etc. Doxylamine is a powerful anticholinergic.
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I’m hoping to not be alive long enough to get those sorts of things... unless a cure pops up, then i may have a problem.

Its been an absolute life saver for me. I doubt i’d be here without it
 
leokitten said:
I would avoid any anticholinergic medication that you take on a consistent basis because anticholinergics seriously increase your risk of getting dementia, Alzheimer’s, etc. Doxylamine is a powerful anticholinergic.
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I believe ME clinicians should stop prescribing doxylamine. Diphenhydramine (in many OTC sleep or “nighttime” meds) is also powerful anticholinergic.

Hydroxyzine is an antihistamine and sleep medication in the same class and has no anticholinergic properties. It’s also generic and very cheap.
 
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Snowdrop said:
What I'd like to know is what sense does it make that hydroxyzine needs a prescription but diphenhydramine does not? What rationale is behind this?
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Only had a quick look but one website said the hydro was 4 times as powerful as other antihistamines, and they thought it caused birth defects.

They decided that something so powerful had to be put on prescription.

But that was only a quick look
 
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