Well, either it worked really well, or I’m in a phase where I was going to sleep really well anyway. (The latter is very plausible as I slept 17 hours on Monday before my mum woke me up.) It didn’t have any bad effects for me anyway. I do have some of the side effects listed as common in the packaging, but they’re ones which often occur for me anyway, so who knows whether they’re an effect of the Daridorexant. I will wait until I’m definitely having a sleep problem, to try it again.
Glad that it may have worked for you @Sarah94. I have an appointment tomorrow with a GP and unless he has some information that the local Formulary is likely to approve Daridorexant soon, I think I may have to use my private prescription at a cost of £200 for 3 months. £800 a year if it works. It may be cheaper to move house! I have been prescribed everything else ( actually currently on 2 NHS drugs for sleep)and have tried others that work in different ways but nothing works. But sleep is so crucial. I think Shakespeare said something to that effect??? Someone erudite may be able to provide it.
I tried 25 mg daridorexant again a couple of nights ago and it had zero effect. Zero. So I’m inclined to think that the “effect” the first time was just one of those periods of high sleepiness that I sometimes get. I may try the 50 mg dose at some point.
Hi Sarah.. It says on website that it’s meant to be taken every night.. not as a rescue. It works over time. Maybe worth taking every night for a few weeks and evaluating at end of that timeframe.
I appreciate that that’s what the marketing says, but I’ve yet to see a scientific/pharmacological/pharmacokinetic reason explaining why it would work like that.
I'm getting on really well with the daridorexant. Strongly recommend to anyone with sleep issues who can get it prescribed. And FWIW, my experience is that it *does* work as a rescue, I don't need to take it every night.
Do you know about whether the local Formulary is going to approve it any time soon? I too am under the SW London Formulary.
That’s great to hear.. Do you feel the quality of sleep you’re getting is better, or that it is improving your ME symptoms or baseline? I would be really excited if my brain worked better with this med.. haven’t managed to get it yet.
Honestly I don't generally have a problem with quality of sleep - the issue is falling asleep and, sometimes, staying asleep. Daridorexant eliminates both those issues. And of course, not being sleep deprived makes my brain work somewhat better.
Reporting back after taking daridorexant. When it was approved by my local Formulary, my GP gave me a prescription and I have been taking 25 mg nightly since about April- cannot actually remember the date. I had to titrate it up and at the same time titrate down the 5mg benzo that I had been taking for decades. I am pleased to be off the benzo and established on daridorexant, in fact very pleased to be off the benzo. How is it working? In the beginning I noticed very little difference. My sleep was still poor but I was reducing nitrazepam so that might have been the explanation. I still had nights when I didn't sleep until 4 or 5 and was asleep till 11am. Gradually I think there has been an improvement. There are more nights when I am asleep by 12 midnight or 1am. I am not yet confident I will sleep when I go to bed but actually I think with time, it is improving and I am sleeping better. I hope I haven't jinxed myself but fingers crossed, the improvement continues.
I tried taking it and had bad experience. I would recommend cutting the 25mg tablet in half w a pill splitter if you are sensitive to meds. My experience was that taking a whole one, I became sort of drowsy/ half asleep half awake with a v uncomfortable doom panicky feeling but also felt like I couldn’t fully wake up to shake it off. Nor did I fall asleep fully for ages. The following day, bad hangover. Weeks later I tried again at 12.5mg three days in a row. Didn’t really help me fall asleep, and felt worse (groggy, worse fatigue) next morning. After the third attempt I really was feeling bad so stopped. V disappointed!
I started on 25mg but also decreasing nitrazepam so it wasn't a definite hit immediately. I asked my GP if I could try the 50mg dose but she wanted a referral from Dr B which I eventually obtained. After a few days I noticed an effect and I now have spells of good regular sleep- but not always. It definitely helps however.
I'm struggling with the daridorexant. Sleep has hugely deteriorated and I seem to have entered a period of delayed sleep phase disorder. I am not sleeping until after 4 am, maybe 5 am. How are other people doing?
Very sorry that your sleep deteriorated Binkie4 and wondered if you, or anyone else here, might also have feedback about the impact of daridorexant on their digestion/gut? My sister has severe ME and I am trying to find a “rescue” sleep medication that won’t worsen her gastroparesis symptoms. While daridorexant seems to be less disruptive to gut motility than other sleep medications I saw nausea/vomiting were listed as a side effect. Very grateful if anyone has any additional thoughts/feedback. Thanks so much
I can’t tell you much but I have a very sensitive digestive system and occasionally taking small daxidorexant pills when I wake up in the middle of the night and can’t fall back asleep again has not seemed to impact my gut at all.
