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.
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.
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.
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.
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)
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.
