Daridorexant - treatment for insomnia

I've had the gastroparesis-like symptoms and I didn't find that daridorexant exacerbated them at all; no additional nausea or other GI symptoms.

I found daridorexant far preferable to the usual sleep medications (benzodiazepines, Z-drugs, sedating antihistamines). The one small caveat I'd mention is that I wasn't able to tolerate the 50mg dose because of sedation persisting into the following day; 25mg was more than enough for me.
 
Thanks very much. That’s really encouraging to hear how much it has helped you. I’m so so sorry that your GP is unwilling to prescribe beyond the three months. I don’t know enough about prescriptions to understand whether there might be any way of appealing or other alternative. Very best wishes for a solution to emerge soon for you.
 
Nightsong said:
I've had the gastroparesis-like symptoms and I didn't find that daridorexant exacerbated them at all; no additional nausea or other GI symptoms.

I found daridorexant far preferable to the usual sleep medications (benzodiazepines, Z-drugs, sedating antihistamines). The one small caveat I'd mention is that I wasn't able to tolerate the 50mg dose because of sedation persisting into the following day; 25mg was more than enough for me.
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That is reassuring about lack of side effects and that it has worked better than the usual suspects for you. Thank you for highlighting dosage - I had seen some warnings that seemed to imply the person taking needed to be in bed for 7 hours and some warnings around risk of falls if frail and I was wondering if that might be a problem if needing to use loo during the night.
 
@Sisterofpwme - I hope your sister is doing well.
I do get GI symptoms and think they have worsened slightly while on daridorexant. I have stayed on it because I think the sleep is slightly improved. It's not a major improvement but better than it was. I need 50 mg, and when it works well, I wake up and come downstairs by about 9.30am quite alert and able to start my day. I always get up to the loo in the night without feeling at risk of falling. It doesn't always work for me but there is some improvement when I take it.
 
Binkie4 said:
@Sisterofpwme - I hope your sister is doing well.
I do get GI symptoms and think they have worsened slightly while on daridorexant. I have stayed on it because I think the sleep is slightly improved. It's not a major improvement but better than it was. I need 50 mg, and when it works well, I wake up and come downstairs by about 9.30am quite alert and able to start my day. I always get up to the loo in the night without feeling at risk of falling. It doesn't always work for me but there is some improvement when I take it.
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Thanks so much - really helpful in trying to understand the potential risk/reward in trying something comparatively new. This forum is so excellent - I am a regular lurker on various threads to try to better understand what might help my sister. I really appreciate everyone’s help and kindness in responding on this.
 
I am afraid that I gave up (for a while) on daridorexant last night, and took 5 mg of nitrazepam and had a blissful 12 hours sleep. I would prefer not to be on a benzo but more important than that is to get some sleep.

The previous 4 nights I had gone to sleep at towards 6 am, sleeping for about 4 hours each night. Prior to that sleep was about 5 hours, and DSPD ( delayed sleep phase disorder) was a strong feature. The level of tiredness and consequent lack of functionality on top of ME was too much.

I find it difficult to know what to conclude about daridorexant. I definitely needed the stronger dose of 50 mg but that was not reliable. The big improvement was in waking more alert and able to function sooner so that the day seemed longer. That was a distinct improvement. GI issues were never of consequence.

I will just have to see how things develop on the nitrazepam. Fortunately I have an unfinished bottle from earlier to keep me going. My sleep issue is a severe one.
 
I am reporting back here late, I was prescribed this briefly to see if I could improve my quality of sleep back in maybe 2023??

I only got one dispense so I only tried it maybe 30 times across a few months. I have skimmed this thread and I don’t think i’ve seen anyone else mention waking up and not “being able to move” . I’m wording it like that because I am kicking myself for not writing down my experience bc now I don’t remember lol. I can’t tell if that is what sleep paralysis is, or if that’s what cataplexy *like* symptoms is. No clue! I was on a low dose, sometimes 5mg but never more than 10mg. No clue if it was full body and speaking issues or just lower body unfortunately

Has anyone else here experienced that? I weirdly assumed it was associated with ME lol… perhaps not?

edit: I am mild with no comorbid’s (apparently)
 
ah86445 said:
I am reporting back here late, I was prescribed this briefly to see if I could improve my quality of sleep back in maybe 2023??

I only got one dispense so I only tried it maybe 30 times across a few months. I have skimmed this thread and I don’t think i’ve seen anyone else mention waking up and not “being able to move” . I’m wording it like that because I am kicking myself for not writing down my experience bc now I don’t remember lol. I can’t tell if that is what sleep paralysis is, or if that’s what cataplexy *like* symptoms is. No clue! I was on a low dose, sometimes 5mg but never more than 10mg. No clue if it was full body and speaking issues or just lower body unfortunately

Has anyone else here experienced that? I weirdly assumed it was associated with ME lol… perhaps not?

edit: I am mild with no comorbid’s (apparently)
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Are you referring to Suvorexant or Daridorexant?
 
ah86445 said:
I am reporting back here late, I was prescribed this briefly to see if I could improve my quality of sleep back in maybe 2023??

I only got one dispense so I only tried it maybe 30 times across a few months. I have skimmed this thread and I don’t think i’ve seen anyone else mention waking up and not “being able to move” . I’m wording it like that because I am kicking myself for not writing down my experience bc now I don’t remember lol. I can’t tell if that is what sleep paralysis is, or if that’s what cataplexy *like* symptoms is. No clue! I was on a low dose, sometimes 5mg but never more than 10mg. No clue if it was full body and speaking issues or just lower body unfortunately

Has anyone else here experienced that? I weirdly assumed it was associated with ME lol… perhaps not?

edit: I am mild with no comorbid’s (apparently)
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I have never taken daridorexant, but have suffered sleep paralysis during multiple periods of my life - some of these may pre-date ME, but I have a suspicion (like others here) that I was actually just very mild at that point.

What you describe does sound a lot like my experience of sleep paralysis - for me, it usually did not last very long, but was often terrifying. It was full body paralysis, with the exception of my eyes. On a few occasions I experienced the classic spectral hallucinations, but on others, it was simply the paralysis. For a while, I thought the whole experience was a repeated hallucination until one day my partner (who had woken earlier) came into the room to tidy up while I lay there and I was later able to describe to them exactly what they had been doing.

Possibly relevant to the discussion here: in the last few years, sleep paralysis has become a less common experience, but taking any kind of sleep aid seems to increase the likelihood of this occurring. This seems to be the case regardless of the mechanism of action, from antihistamines to tricylics. Most recently and unusually, I experienced an episode with doxepin that seemed to occur before rather than following sleep onset. Most disturbing.
 
DHagen said:
I have never taken daridorexant, but have suffered sleep paralysis during multiple periods of my life - some of these may pre-date ME, but I have a suspicion (like others here) that I was actually just very mild at that point.
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thanks for sharing. I’m sorry yours was accompanied by fear, that sounds awful. I personally did not notice any fear or hallucinations when I experienced it. It was more so that I woke up and thought “huh, my legs & (maybe arms?) are numb. must have slept on them weird”. No clue how long it lasted or if I just fell back asleep if it happened sometimes during the night or when waking. I most likely went back to sleep while laying there as I am not someone who can stay awake very easily, especially after waking up it’s a fight to stay awake.

Do you know if the fear/ distress is common or is it common to just have the lack of movement only?

Also sorry to hear it happens with other sleep aids, I have never experienced it with any other drug. It has been entirely unique to that drug only. I am crossing my fingers that the trend of it happening less and less continues for you.

edit: i forgot to add, but i vaguely recall the first time thinking my body was numb from the pins and needles type, idk the term for it. And im pretty sure i could move my arms that time and so i picked up my leg or something and moved it so i could “get my circulation back” bc i was half asleep and assumed id slept weirdly lol

I also have no idea why I was prescribed it. I was very far from knowledgeable about sleep drugs at the time. I knew I was waking up extremely unrefreshed, but the issue was that I was not waking up half the time. During that period I was sleeping 14+ hours, with at my most sleeping 24 hours without any memory of waking up. I was very dehydrated after that one.
 
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ah86445 said:
Do you know if the fear/ distress is common or is it common to just have the lack of movement only?
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I have only been able to discuss it directly with a few people who also experience sleep paralysis. I think most of them have reported some distress, though I think this might be tied more to confusion about what is going on and decreases with familiarity - also dependent upon whether or not hallucinations are also experienced. Very small sample pool though, so I would hesitate to generalize.
ah86445 said:
Also sorry to hear it happens with other sleep aids, I have never experienced it with any other drug. It has been entirely unique to that drug only. I am crossing my fingers that the trend of it happening less and less continues for you.
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Thank you. The common thread for me seems to be that sleep meds work to shut down (or trigger a shut down) of my body, while the mind is only partially affected - this is to say, my thinking becomes confused with heightened brain fog and dyslexia-like disorganization, but does not stop churning through thoughts and absolutely does not sleep. The disconnect between the brain and body (I know it's a false dichotomy, but that is more or less how I experience it) tends to induce panic, which naturally exacerbates everything. Haven't tried any of the meds that work on orexin yet, so maybe we'll see.

ah86445 said:
edit: i forgot to add, but i vaguely recall the first time thinking my body was numb from the pins and needles type, idk the term for it. And im pretty sure i could move my arms that time and so i picked up my leg or something and moved it so i could “get my circulation back” bc i was half asleep and assumed id slept weirdly lol
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Interesting - this sounds a fair bit different from what I have experienced myself, but that absolutely does not mean it isn't in some way related. I hope things are at least a bit more stable on your end now.
 
I’ve been using this drug on and off for a year now. It’s not a silver bullet. I wish my sleep was so easy a single pill could fix it. But I like it because it definitely helps a little and I haven’t noticed a tapering of the effect.
 
Am struggling again with sleep. It seems an intractable problem. Not sleeping till after 6am. I think I'm going to give daridorexant another go. Am in PEM too but don't think I will get out of it until I start to sleep.

I think I will look back at my instructions from Dr Bansal and titrate the benzo down first. I have noticed that I have a more drugged feeling with the benzo whereas with daridorexant, I could start my day feeling more alert. I really must try something different so perhaps tomorrow night.
@Yann04 - I notice that you are persisting with daridorexant and mention a second drug. I hope you don't mind me asking iif it is to be taken simultaneously or sequentionally.
 
My daughter is on Daridorexant and melatonin. The D gets her to sleep much quicker, she wakes much less often and when she does wake it enables her to get back to sleep more quickly.
She doesn't feel any more refreshed in the mornings and it still takes a couple of hours at least for her to "come to". By this I mean she spends a couple of hours downstairs, sitting with feet up, watching easy vlogs and having her breakfast. (No, it doesn't take the full two hours to get through her iced coffe and a cold waffle)

She is only now, about 3 hours after coming down able to do something else.

I do notice that her cognitive processing has improved a little. She has, for instance been able to do more of the PIP application process this year.
When we did the Universal credit process, starting 2023, it was much harder for her to comprehend.
 
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Binkie4 said:
perhaps tomorrow night.
@Yann04 - I notice that you are persisting with daridorexant and mention a second drug. I hope you don't mind me asking iif it is to be taken simultaneously or sequentionally.
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Yeah my nights go something like this.

Melatonin 9:30 pm
Fall Asleep ~12:00
wake up ~3am if cant fall back asleep take daxidorexant (1/2 dose)
wake up ~ 6am (if cant fall back asleep take trazodone)
wake up ~ 8am (take another 1/2 daxi

Ever since I’m very severe if I don’t sleep 11+ hours I don’t even have energy to eat.

I also use benzo for emergencies but thats like spaced out ~ every 2 weeks. So I don’t get tolerance.

Hope you find something that works and manage to get out of PEM.
 
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Thank you @Yann04. Your schedule is a real indicator of how bad sleep problems can get in ME. Sleeping in order to eat adds such pressure.
Again last night, I didn't sleep until 6am and that was with trying both our bed and then my recliner to try and trick my body to relax.
At 6.30 I was upstairs with fresh tea, then turned over and went immediately to sleep. It is like a switch. I slept until 10.30. Four hours isn't enough to build recovery when in PEM.

My GP approved my returning to a benzo which helped for a while. I use 5 mg although am approved for 10 when needed. I do not wish to develop a severe dependency so severely restrict that dose to extremely occasional although I did take an extra half last night.
I must return to daridorexant and melatonin and see what happens.
 
I had tried this back in 2024 and couldn’t tolerate the side effects, also found it not helpful for sleep. Decided to give it another go. Went very slowly — halved the 25mg pill and took 12.5mg for 10 days. Increased to 25mg for 10 days. Then up to 37.5 (1.5 25mg pills). Each time I raised dose I’d have worse grogginess and brain fog during day. And sleep would work for one or two nights and then not. Stuck with it, now after a month, no daytime grogginess and — I turn out light and just fall asleep like a normal person. Sleep about 8 hours which is amazing. Don’t feel any better ME wise during day — was hoping the extra or deeper sleep might improve cognition — not so far.
 
I've always been a very good sleeper, even after late-night exercise or intense work stress. The MECFS has ruined my sleep. At first, when it was mild to moderate, I would wake up at 3:30 or 4:00 AM and fall back asleep 1 or 2 hours later. Since the severe symptoms, I take 50 mg of Daridorexant and a small dose of benzodiazepine to help me sleep. Despite this, I still wake up 10 times a night.
 
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