Daridorexant - treatment for insomnia

[Kiristar]

I'm on this since about 9 months. Zero side effects I can notice and I am top end of severe and med sensitive. It works a treat. Getting off to sleep was a real problem for me and it helps by "reducing the wakefulness" neurotransmitter. No grogginess or thick head like the usual sleep meds.
Unfortunately my GP has refused to prescribe it to me as its supposedly "not for longer than 3 months use". Off the record the pharmacist just said they "lacked the guts" to prescribe a new med.
I'm absolutely gutted as my private prescriber is retiring so I am about to lose access, and it's costing a bomb privately.

ETA I need the full 50mg dose. 25mg was not strong enough to work.

 

[Nightsong]

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.

 

[Sisterofpwme]

I'm on this since about 9 months. Zero side effects I can notice and I am top end of severe and med sensitive. It works a treat. Getting off to sleep was a real problem for me and it helps by "reducing the wakefulness" neurotransmitter. No grogginess or thick head like the usual sleep meds.
Unfortunately my GP has refused to prescribe it to me as its supposedly "not for longer than 3 months use". Off the record the pharmacist just said they "lacked the guts" to prescribe a new med.
I'm absolutely gutted as my private prescriber is retiring so I am about to lose access, and it's costing a bomb privately.

ETA I need the full 50mg dose. 25mg was not strong enough to work.

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.

 

[Sisterofpwme]

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.

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.

 

[Binkie4]

@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.

 

[Sisterofpwme]

@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.

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.

 

[Kiristar]

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.

Thanks. We're attempting the complaint process escalation but not hopeful as ICS is pretty "anti ME" as I have heard, this even though the Dr has misread the NICE guidelines which (according to o/h whose helping me) do presume long term use whilst encouraging least time needed as is wise for any intervention)

 

[Binkie4]

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.

 

[ah86445]

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)

 

[Holinger]

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)

Are you referring to Suvorexant or Daridorexant?

 

[ah86445]

Are you referring to Suvorexant or Daridorexant?

My apologies, I accidentally thought they were the same thing. I did mean Suvorexant, I have never had Daridorexant.

 

[DHagen]

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)

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.

 

[Kiristar]

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.

Thank you. My husband did some research and it took a formal complaint but he quoted the NICE guidelines wording right back at them and I did in the end manage to get on it long term. Which is great as it still works effectively for me and I rely on it alot.

 

[ah86445]

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.

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.

 

[DHagen]

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

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.

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.

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.

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

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.

 

[Yann04]

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.