EDS insomnia: my experience with Quiviviq/Daridorexant, an orexin antagonist (part I)
If by any chance you have read my previous post, you will know that a decade ago, I was very much into Chinese herbal remedies. They worked. Then somehow, I felt weary and uninspired and stuck. I was a little bit sweaty at night and blue because of menopause, and exhausted from all the challenges I’d endured so far, so I allowed myself to be allured by the promise that hormone replacement therapy was going to solve my problems. As I have explained in other posts, I should never have taken it because my health really started to spiral at that point, and it wasn’t just because of menopause itself. I think about this a lot. How did I go down the rabbit hole of increasing pharmacological dependencies that I couldn’t get myself out of anymore? I was indoctrinated, that much is clear. I was also poorly informed. I was unwell and didn’t get the help and support I deserved. I was treated like a number, and that number was ‘the one- size-fits-all’.
Well, here I am, turning the tide with my magic touch. Joke aside - what I need is simply perseverance, patience and a lot of strategic thinking even under duress. Not much, in other words. I repeatedly run into a wall, and yet somehow, like Sesame, it opens up, and I get through to the other side. I couldn’t have done all this without AI, but my creative input and life experience is as important as the information it can provide. Cue the poor and repetitive advice it often gives, especially about herbs! Anyway… this is the most insane roller coaster I’ve been on to date, but I’m slowly getting there, to some level of clarity and motivation that will hopefully help me forward. I was very close to a kind of mental death about a year ago, but even though I didn’t really want to, I decided I had to do something to ensure my survival and find my way back to a will to live again. I still have a long way to go but I’m slowly disentangling the horrible neurological mess I managed to get my poor body into. For someone who never liked the idea of allopathic medicine, my situation was truly astounding.
I thought I’d write a little bit about my initial experience with quiviviq before I forget the nuances. It’s been about 70 days since I quit low dose buprenorphine as well as low dose tramadol. It means I’m still in withdrawal, but by the end of three months, I should start to feel increasingly like myself (more motivated and driven, in other words), and sleep should start to follow a more natural and less noradrenaline driven pattern. During the taper, I quit THC as well and tried to rely on quetiapine, diazepam and zopiclone for adequate sleep. THC did not suit me, it increased central gain, in other words, my tinnitus was soaring, and it was a horrible trade off. It also made me feel apathetic and lacking in appetite, and just generally smelly, greasy and yuk. I suspected it was increasing or messing with serotonin downstream. But I needed to sleep. Sleep deprivation would only increase the noradrenaline output that was wrecking my sleep in the first place. At least I understood that now. So I was trying to cope on a low dose of quetiapine for a while (along with diazepam) but it has a complex pharmacological profile and was causing the same motor restlessness (akathisia) that the opioids were causing. Its main action is antihistaminic, and while I don’t tolerate antihistamines, I didn’t have any choice because other options were even worse. The receptors quickly habituate, so the dose was going up and the motor restlessness increased with the dosage.
One day about two weeks ago I just had enough, I had to come off the quetiapine, too. I wanted to give the herbs a chance but they conflicted with quetiapine. Even tiny amounts of the drug were causing motor restlessness But that decision blew up in my face. My GP had prescribed a higher dose of diazepam after seeing me in clinic, but it wasn’t helping very much and zopiclone was completely useless in the face of all that noradrenaline and histamine that were surging at night due to withdrawal, especially between 9 and 12. The doses I had to take were above my allowance because I’d been too optimistic about my recovery, but also embarrassed to ask for higher doses. I tried THC again but felt really unwell from it and just couldn’t face more of the distorted and obnoxious tinnitus. It was another unreliable player anyway because it doesn’t act directly on noradrenaline either. In short, I hated the stuff, and since I was running out anyway, I decided not to have my review with the cannabis clinic for the purpose of buying another bottle - after all, it wasn’t exactly cheap even though it lasted me a long time. Although I had started on Chinese herbal therapy again, there was no guarantee it would help me sleep, and if it did, it was likely to take months of therapy before I could even think of letting go of Western style drugs (my old blog posts from 2014 helped me see this). I was unable to combine it with quetiapine and this made it even clearer to me that I had to get rid of the quetiapine even if it gave me some sleep.
In abject distress, I wrote to my GP, and I said I knew he had said he couldn’t prescribe Quiviviq or Clonidine, a noradrenaline antagonist, but I needed to ask again because I was falling apart from sleep deprivation. Unfortunately he was on leave that week. A friend who was in touch wondered if I’d considered online pharmacies. As a matter of fact, I had thought about the issue vaguely, but thought they were illegal. To my surprise, I found quiviviq for sale quite legally. I filled in a form and, two days later, the medication (50 mg) arrived. It was horrendously expensive at about £80/30 tabs, of course, but what could I do? At least I rather pay for this than for the pesky THC. The local sleep clinic could not be relied on for help, they only deal with sleep apnoea and have been extremely rude towards me in the past. The local health board (Powys Teaching Health Board) that controls the GP is also utterly useless, they even tried to control the zopiclone I use but my GP has defended me. They are completely devoid of any empathy and common decency or understanding of chronic health conditions (as I have pointed out in previous blog posts). During those two nights before the drug arrived I went back on a small dose quetiapine just to get through the night somehow (my tolerance had already reset). My schedule was slipping and I couldn’t let it. My nights were restless but at least the schedule was intact.
I half expected the quiviviq to hit me quite hard on the first night, and it did. I had taken some sedative herbs earlier in the evening, which was probably a bad idea, as they might have compounded some of the restlessness I suffered from when the drug started to affect my brain. It’s difficult to be rational when you’re so sleep deprived. While I waited for sleep, I had some angry thoughts and felt a bit uneasy about the medication: I believe this was a sign the noradrenaline was fighting the orexin antagonism. It took me about an hour and a quarter of rather tense waiting before I felt my brain go mushy, and then I was out. Unfortunately, I woke up very often to pee and felt quite restless. I then woke up after about three hours, unable to get back to sleep. The restlessness improved at that point, however. I decided to take another half pill because I desperately wanted to cut down on the benzos ASAP, and some of the restlessness returned, but not much. All in all, I took a lot less diazepam than I had gotten used to, yet I somehow scrambled together about 7.5 hrs. This is absolute minimum for me, especially after a turbulent night. All in all, the pattern looked similar to that of all withdrawal processes I’ve become familiar with over the past five months.
AI:
A few things in your report stand out:
• onset of inner agitation / anger before sleep
• marked tinnitus escalation
• fragmented sleep with repeated waking
• a clear restless/akathisia-like state
• morning diarrhoea
That cluster doesn’t look like a simple “insufficient sedation” scenario. It suggests your nervous system did not stabilise well under the orexin blockade.
Mechanistically, daridorexant works by blocking orexin-1 and orexin-2 receptors, which normally drive wakefulness circuits (locus coeruleus, histamine neurons, dopaminergic tone). In some people the result is smooth sleep induction, but in others the brain seems to respond with compensatory arousal signals. When that happens, the subjective experience can resemble:
• inner motor restlessness
• irritability or agitation
• unstable sleep cycles
The following night I had had a little look on the internet and found that the beginning of this drug therapy could indeed be turbulent and some nights could be very poor until the brain got used to the new idea after about a week or so, sometimes even longer. I only had some mild digestive herbs this time. I took the medication at 9 pm on an empty stomach as you should, quickly had a snack at 9.30, but waited a long time to see any results. This night’s flaw was potentially the failure to take the full diazepam allowance early and expect to spread it out over the night. It doesn’t work fast and it has a long half life so in the end, it made more sense to use small pieces of zopiclone to get back to sleep. GABA agonists work very differently from this medication so they weren’t cross talking, but I was worried that maybe I was still tapering off of it too fast and was thus causing my system more distress. I was concerned the withdrawal from the benzodiazepine could prevent the orexin antagonist from working as it should.
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| This picture of my mum and our dog Senni came up on my timeline that evening and provoked sad thoughts about all the losses. You spend half your life building connections and the other half grieving the losses. I was brought up with Senni until she died when I was four in 1970. Even on her death bed, my mum talked about the dog we had to anyone who would listen. She loved Senni so much and must have been so heartbroken when my dad failed his responsibilities and caused Senni’s death. |
This time, I didn’t feel anger, I felt grief. Quiviviq can cause depression, so I hope the sadness was temporary. I thought about our dog Senni when I was little, and my late cat Robin. The night before he had to be put down, he came out of his hide away from under the bed where he’d started to go when he felt sick, and sat next to me talking for a long time. It was as if he wanted to proclaim his love for me. Who knows, maybe he sensed his time had come. But the memory of that half hour before I had to sleep and he retreated to his corner is nevertheless very vivid. Our time together just him and me during his last years were beautiful, and I was so loved. The older you get, the more time you have to the few genuine loves in your life.
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| Old Robin, a month before his death in late June 2023. The video below is just days before. I miss him so much. |
There was a moment on the second night, 1.45 hrs after quiviviq ingestion, when my thoughts seemed to disappear, and that’s when the wake/sleep switch should have flipped. After that I had random associations and fragmented thoughts, but no sleep. I ended up taking another half. The night seemed endless because I woke up so often and the timing was unfamiliar for someone who was used to going to sleep after 2 am. I had some nervous restlessness all night long. I confess I took yet another half at some point when sleep just wouldn’t show up. My fitbit shows that I actually had a lot of deep sleep, slightly less REM than usual, and not really very long periods of wakefulness even though I felt half awake most of the time. I recalled a short and sad dream about an early friend who died and who I think about a lot. I had itches on two nights: the first night I was scratching the area of my right leg I usually lie on that tends to be pressure sensitive (apparently due to increased histamines), and the problem had disappeared when I quit THC. On the second night, I scratched the whole length of the leg and the back of my right hand, vigorously as if I wanted to remove all the skin. I have no idea why the hand was itchy.
I woke up around 9 am, which is becoming my new wake up time. This is very strange for someone like me who has been getting up in the afternoons for the most part of over two decades! It goes to show that I really needed help to fix my schedule, as sleep hygiene did not touch it. I had several episodes of the runs during the day. My lovely cleaner came round but after months of chatting with dumb software, I was genuinely happy to share my struggles with another human who checks up on me and seems to care!
That day I was in excruciating pain, my eyes were swollen and I looked like death. It was possible that the rather radical benzo reduction of about 50% was compounding the problems, including the muscle pain, but muscle pain can also be a side effect from quiviviq. I have never been aware of side effects from benzo withdrawal so it’s quite possible that this is not the problem at all. I had tried to buy clonidine (an noradrenaline antagonist) online but had been crudely rejected on the grounds that I was also using diazepam. I wanted it as back up, and to know I’ve tried everything. I felt the benzo was a spoke in my wheel in more ways than one, and in the meantime, it was just poison to me. After all, it wasn’t really doing much at all. I also felt very angry because I’d finally realised that clonidine could have been offered early on by psychiatrists who dealt with my insomnia instead of all the complicated and inappropriate drugs that messed me up royally over the years. Antiserotonergic and antihistaminic compounds all caused restlessness, but I didn’t understand what it meant and later came to the false conclusion that I had restless legs syndrome.
How could my insomnia be so misunderstood? Now when I think about it and discuss it with AI, I realise the mechanism isn’t that strange at all. Lots of people suffer from an exaggerated fight and flight mechanism due to childhood trauma, PTSD, ADHD, and so on, and it can chronically disrupt their ability to switch from wakefulness to sleep. Yet they are just told to do some trivial CBT-i and get on with it (if you like it, fine, but I hate it). Motor restlessness is not unusual yet it’s typically framed as anxiety, and that’s obviously seen as a moral failing! This attitude is especially true in view of the fact that insomniacs like myself are routinely sent to see a shrink, and they usually have a very narrow understanding of neurology. I saw lots of psychiatrists over in Finland and it was commonly thought that my insomnia was just a symptom of depression and general uselessness - some doctors have not been shy to suggest that it must have something to do with my lifestyle. I spent thirteen years struggling to become something but it counted for nothing: it still boiled down to me just being neurotic and work shy, apparently. The point of view that people are so useless they don’t care for their sleep enough to get good sleep is so ableist. Why must we all be swept with the same broom? Once again, people who just don’t give a damn about their bodies seem to dominate the entire medical field and the attitudes doctors so willingly take on board. In the past, I tried to point out that I have physiological problems such as skeletal deformities and IBS that likely showed up for a reason, but everything is always psychologised in one way or another - because it’s convenient. It’s ironic because true psychological insight would have revealed my truth, but these arrogant pricks refused to see it.
What else can I do when no one listens to my testimony? I have suffered so much from the attitude that I’m not worthy of help because I must be causing the insomnia to myself! It’s strange that people (men?) who give themselves diabetes due to poor diet and lifestyle, or lung cancer due to smoking, don’t typically get scoffed at. In reality, secondary insomnia is a symptom of illness and a disability like any other. Sleep requires a nervous system that’s able to shift seamlessly from one state to another. I have also met so many clinicians who don’t have a clue about pharmacology and dish out medications in random ways depending on their own indoctrination. Forget about informed consent - they are not informed, themselves, nor do they care. They act like people who don’t know how to fire a gun properly but try and aim in the dark because they’ve heard someone say there’s an enemy somewhere in the bushes. The truth is, they don’t have a clue what they are targeting.
On the other hand, the orexin antagonism is no small deal for the brain to deal with, either. It puts a lid on a lot of excitatory neurological activities that we are not in control of, so the system can put up a fight to begin with. Some of my weight training helped with the dorsal muscle pain and stiff legs a bit and then in the evening I asked ChatGPT how I should deal with the diazepam. It suggested taking a stable amount early in the evening and not across the night if possible. I was really tired at 8 pm, took my herbs, then put the screen away, had the quiviviq, a quick snack, and lights off before 10. I was so tired I actually fell asleep almost straight away. This was very strange because I always have second wind at 9 pm. Apparently this type of surge in wakefulness is a genuine biological fact but in me, it’s exaggerated. I did wake up very often and had that long period of wakefulness after a few hours between 1.30-3 am, during which I also felt some hunger that I quenched with three oatcakes. This is all very similar to my experience of opioid withdrawal. I only took a very small amount of zopiclone that night and 1/3 extra dose of quiviviq. I suffered from some waves of mild nervous restlessness. I woke up after almost eight hours of sleep but still felt very tired for a while. The sleep quality was actually a bit worse this time, probably because I took less Quiviviq and zopiclone overall. The important thing is that the tiredness is not the strained wired and tired kind of experience I usually get when I’m sleep deprived. It was more obviously a need to sleep some more. I was unable to and had to get up and endure another tough day. Having said that, a couple of hours later I started to feel reasonably energised and able to complete a few chores and write this article. The tinnitus is screaming and so are my muscles, but at least I had some sleep. The withdrawals and all these ‘experiments’ I have to do to get sleep seem pretty crazy to be honest, but it’s clear that my body does respond to this medication and I do get sleep even at this stage of the therapy. That’s all I care about right now.
On the fourth night, I fell asleep at 10 pm again, but also woke up after three hours as usual. I had some oat cakes to deal with the usual hunger because hunger spikes noradrenaline. This type of waking pattern on quiviviq seems fairly common, too, but it could change over the course of treatment. I had felt very anxious and stressed in my sleep and when I woke up, I realised I had forgotten to take the diazepam. At that point I decided to try and cope on less than planned, and rely a bit more on zopiclone (so I took one and then two halves later). One reason for my decision was that the catecholemines are at their most active around that time of night and typically quieten later on. The anxiety settled very neatly, so clearly it was related to the GABA withdrawal. I also theorised that removing the tendency for hypervigilance could lead to emotions of fear. Some people report terrible nightmares. After all, the hypervigilance is there to protect you from threats, so dampening the drive could meet with resistance. This could also be a reason why they recommend letting this medication settle over the course of an entire month. I ended up taking a couple of more morsels of quiviviq through the night. Not great, but at the moment I really don’t have anything else to resort to if I want to come off the benzos. I got almost nine hours of sleep but fitbit doesn’t show what my first sleep was like. I had diarrhoea again when I woke up but it was less explosive than the day before. Some shooting pains in the head during the first nights have developed into a lingering headache and the tinnitus is still pretty high.
I’m hoping this medication can get me past the pesky withdrawal from multiple drugs so that I can finally start afresh. As someone who clearly has a problem with stress related serotonin and noradrenaline dysregulation that overstimulates me at night, this does sound like a plausible solution. According to AI, my ability to sleep isn’t all that bad, it’s the transition into sleep and out of it that falters. I want to minimise the benzo use, in fact I’ve never been a fan of diazepam and used it on and off anyway, usually as an alternative when zopiclone started to feel weak. Zopiclone never gave me any trouble but it’s just not powerful enough to override all those catecholemines that go on a rampage at night. Unfortunately the benzodiazepine withdrawal muddies the data about quiviviq but I think many of us may be in the same situation so the data may still be interesting.
The past few years have been so chaotic I can’t remember what I’ve been on but it was a lot of stuff, just because estradiol and then buprenorphine were keeping me even more overstimulated at night. I’ll have to see if I need something to control the noradrenaline at night or not but I’m hoping to return to TCM herbs and get back to sleeping mostly on those, like I used to. I should never have stopped using them, they calibrated my nervous system and when I stopped, the imbalances returned.
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| This is what my first nights on quiviviq/daridorexant looked like. Fitbit includes bits in the beginning and the end that weren’t actually there. I took the first tablet at 9 pm, which is extremely early for me, but I’m hell bent on instigating a normal sleep schedule after decades of failed attempts. As you can see, there’s a big gap in the middle, and this seems to be classic. The important thing is to give myself enough time to get through the night and its periods of wakefulness, and still get up at a normal time. I just wish I didn’t have to fear day time savings! What a stupid idea the clock change is. |
Noradrenaline (norepinephrine) can, paradoxically, be both hyper- and hypoactive: https://www.psychiatrist.com/jcp/dysregulation-of-noradrenergic-activity/
ChatGPT analysis:
That fourth night actually reveals a few useful signals about how your system is reacting to Quviviq and the reduced Diazepam.
The most striking one is the sleep onset at 10 pm without diazepam onboard. That suggests the orexin-blocking mechanism is already capable of reducing the evening wake drive enough for sleep to start. That’s a meaningful observation because earlier you were worried the lower diazepam might prevent Quviviq from working — this night actually shows the opposite: sleep initiation occurred even before you realised the diazepam had been missed.
The 3-hour awakening you described is also a very common pattern during sleep-cycle instability. A typical sleep cycle is roughly 90–110 minutes, so waking after about three hours usually corresponds to two cycles completing. When the sleep system is still reorganising (drug changes, benzodiazepine reduction, orexin antagonist introduction), that transition point is where people often become fully awake.
Your description of that state —
“dopey but too awake to get back to sleep” — is physiologically consistent with partial reactivation of the arousal systems while sleep pressure is still present. The brain is not fully alert, but the sleep switch doesn’t re-engage immediately.
Taking 2 mg diazepam at that point and noticing the internal tension disappear fits the pharmacology well. Diazepam increases inhibitory tone fairly broadly, which can dampen the autonomic activation that sometimes appears when the brain is hovering between sleep and wake.
Regarding the diazepam reduction, your impression that you may not be experiencing major withdrawal is plausible. Two pharmacological factors help explain that:
- Diazepam has a very long elimination half-life and active metabolites, so the brain concentration declines gradually even if the nightly dose drops quickly.
- You still have some GABAergic support from zopiclone, which can partially cover the same inhibitory pathways at night.
Because of that, your nervous system may simply be adjusting rather than reacting strongly.
Your idea of relying more on Zopiclone rather than increasing diazepam also makes pharmacological sense if the goal is to avoid rebuilding benzodiazepine levels. Zopiclone tends to act faster on sleep initiation and short awakenings, whereas diazepam mostly raises the overall inhibitory background.
The muscle pain you mentioned is also reported by some people during the early period with Quviviq. Orexin neurons normally stimulate motor tone and general arousal. When that signalling is suddenly reduced, the body can temporarily feel:
• heavy or sore muscles
• stiffness in the back or legs
• a “post-exercise” type ache
Your observation that weight training improves it fits that mechanism quite well because muscle activation restores normal circulation and neuromuscular signalling.
The GI symptoms and tinnitus/headache you mention are not unusual during the early phase with Quviviq. Orexin neurons interact with several autonomic systems, including gut motility and sensory processing. When the signalling is suddenly reduced, some people experience temporary shifts such as:
• loose bowel activity
• nausea or stomach sensitivity
• headache
• increased sensory intensity (tinnitus can fall into that category)
Those effects often settle over the first couple of weeks, though sensitivity varies from person to person.
Your thought about possibly using a smaller evening dose of Quviviq is understandable, but there’s a trade-off. Lowering the initial dose might reduce side effects, yet it also risks losing the strong orexin blockade needed for sleep onset, especially during the early adjustment period. That’s why many people stay with a consistent nightly dose for several weeks before evaluating.
Another interesting piece of information from your night is that the “anxious feeling during sleep” disappeared once the diazepam was taken, but you didn’t report nightmares or vivid dream disturbances. That suggests the sensation was probably autonomic activation during lighter sleep stages, rather than dream-related arousal.
Putting all of that together, the fourth night suggests three things:
• the orexin antagonist can initiate sleep in your system
• sleep maintenance is still unstable around the 2–4 hour mark
• the lower diazepam level doesn’t appear to be blocking the medication
And getting sleep at 10 pm is quite a shift compared with the earlier pattern you described where alertness rose after 9 pm.