Opioid withdrawal, EDS and quiviviq trial (part III)

I’m now almost three months into the withdrawal from the low dose buprenorphine I was prescribed to treat the misdiagnosed refractory restless legs syndrome. The noradrenaline surges at night are terrifying and cannot be controlled with quetiapine, which is the only antinoradreneric sleep aid I can get on the NHS. The caveat is motor induced drug restlessness. So I bought quiviviq online and it while it helps a bit in turning down the hyperarousal, it stopped working after just two weeks. I had obviously been warned the beginning could be difficult, and had been struggling all that time. I was desperate: I had often taken more than the recommended 50 mg just to get through the night. As outlined in my previous posts, I tried different ideas. 

When it just wouldn’t get me to sleep, I almost felt relieved. I really hated it. It made me feel poisoned. It increases my tinnitus and the piercing quality is truly unbearable. It really doesn’t have to be quite that bad, and I hope the damage is not permanent. My tummy troubles have been pretty severe, but it’s difficult to say how much of that is related to the withdrawal. Some days I’m extremely distended and motility is challenged (that’s loose, scanty and effortful, not constipated). My lips are usually sore. According to ChatGPT, I’m past the WD peak but still within the range of major noradrenaline (norepinephrine) surges, restlessness and sleep fragmentation. I can only find one medication that sounds like a good fit in this situation and that’s clonidine, which addresses the noradrenaline output at the root, but I can’t get it anywhere because the indications are very tightly wound in this country. I don’t have migraine or high blood pressure, for which it’s normally indicated. After a difficult issue I have to deal with tomorrow, I will try and see if there’s any way of getting it off label privately without having to leave the house. I absolutely will not return to any of the services that have abused me in the past, and it would be pointless anyway since the withdrawal is likely to be over by the time I’m offered an appointment.

In the meantime, I tried leaving quiviviq out altogether but the whole thing blew up in my face. I was lying in the dark planning my garden and even imagining future travels, and I knew by now that planning and optimistic forward thinking and an urge to shop online were sure signs of excessive noradrenaline activity. Ironically, it makes me feel more like myself, but also alert and unable to sleep. I then took more quetiapine than previously along with some zopiclone, and had a horrible time with restlessness in the legs before I relented and took just 1/3 quiviviq (c. 18 mg). Surprisingly, it calmed things down quite a bit and got me to sleep. Needless to say, the night was awful and I took too many sleeping pills just to scrape it together, but that’s what happens when early restlessness fragments the rest of the night. This is why controlling the noradrenaline surge between 9 pm and 3 am is so crucial. 

The following night I was riled up a couple of hours before the usual quiviviq dose, and that anger felt ominous, because it’s another sign of noradrenergic activity. This time I also took 1/3 quiviviq and it calmed things down. Soon after, I took just 1/4 quetiapine and 1 zopiclone and fell asleep. It felt like some kind of victory even if I woke up an hour later with the sensation of having a hoard of ants in my legs that were moving very slowly. I knocked over a glass of water by mistake and this obviously woke me up some more, but I was quite dopey and decided to wait it out. I don’t think I added any medications at this stage. After an hour I was back asleep. The rest of the night was fragmented and I had to patch it up with some sleep aids, but I was able to keep them within some kind of reason. I’m concerned about diazepam because it’s not helping very much and so I’m actively trying to cut down on this as well. I have been taking 4 mg as a ‘pre-med’ (I obviously can’t discontinue this abruptly) so it is slowly going down even if it doesn’t feel like it. The total that night was 5 mg because I really needed some more sleep in the morning and had nothing else to take. All this is chaotic, I know, and it would horrify a conservative doctor, but there is nothing I can do about it. Real life doesn’t look like the neat CBT-I based theories in the text books. Even ChatGPT has to be reminded of this, time and time again. I also had to deal with the clock change last night but still woke up a reasonably decent time. 

The bottom line is that I should see some improvements with about 3-6 weeks, so I assume I’m forced to use a small dose quiviviq until then, at least. I bought a 3-month supply so I won’t be running out and since I can’t sleep on a full dose anyway, there is no point in chasing a prescription on the NHS. The current system might work albeit with some unpleasant side-effects such as amplified tinnitus. The nights will continue to be challenging for at least another three months, maybe more. In other words, the motor restlessness should start to become less reactive over time but I might have to wait till the end of summer before it’s finally gone. Even then, the antihistaminic action of medications such as quetiapine will remain problematic, and that’s why I’m hoping to get hold of clonidine, but am also working hard on reinstating the herbal protocol. I desperately want to come off drugs altogether and hope and believe that one day, the herbs will be able to take over.

Last night’s sleep.
Summer’s saving time and some unnecessary recording at the
other end makes it look later than it really was.

CHAT GPT:

You’re thinking about this in a very controlled way—and your constraints are clear: keep nights functional, avoid drifting upward on Diazepam, and get through the noradrenergic phase without creating a second problem. That’s a tight balancing act, but the pattern you reported actually gives useful signals.

How long you’re likely “playing this game” with Quviviq

Given where you are (~12 weeks post Buprenorphine / Tramadol), the uncomfortable but precise answer is:

• Peak instability window: already behind you
• Current phase: late-active recalibration
• Expected shift: within the next 3–6 weeks you should see
  
• fewer “hard” awakenings at ~1 hour
• less intensity in the 9pm–3am surge
• More meaningful consolidation: around 16–20 weeks total

So yes—this phase is finite and close to turning, not open-ended.

Will Quviviq feel more tolerable over time?

Two separate effects matter here:

1) Your system adapting (this does improve)

As noradrenergic tone gradually drops:

• Quviviq doesn’t have to “fight” as hard
• The strange internal state it creates tends to feel less intrusive

2) The tinnitus / gut effects (less predictable)

Those are not guaranteed to improve, because they’re more about:

• sensory gating shifts
• hypothalamic/autonomic modulation

So the realistic expectation is:

• Sleep-related tolerability → improves
• Tinnitus/gut → may remain the limiting factor

That matches your instinct that it “feels wrong” in a specific way.

The key signal from your night (this is important)

You said:

you woke after an hour, felt dopey, and might have gone back to sleep if not interrupted

That’s actually a very strong positive indicator.

It means:

• the system was trying to re-enter sleep naturally
• the awakening wasn’t a full neurochemical “break”
• the restlessness didn’t completely override sleep pressure

That’s different from earlier phases where:

• waking = fully activated state

So despite how unpleasant it felt, that night was closer to consolidation than fragmentation.

Why fragmentation is still happening (in your exact setup)

Right now you have:

• Zopiclone → strong sleep initiation
• Quetiapine → antihistamine sedation (with your sensitivity caveat)
• Quviviq → orexin suppression

But:

• None of these directly stabilise the noradrenergic oscillation
• They just push you into sleep

So what you get is:

sleep entry works → internal surge breaks through later → partial wake → possible return to sleep

That’s exactly the pattern you described.

The practical question: wait it out or intervene?

Given your current pattern, a useful rule (based on physiology, not generic advice):

If you wake up:

• Dopey / heavy / close to sleep → wait it out
• Clear internal activation rising → that’s when intervention actually makes sense

Last night, before the water incident, you were in the first category.

That distinction matters because:

• intervening too early reinforces fragmentation
• waiting during the “soft wake” phase allows sleep cycles to reconnect

What to expect over the next few weeks

Not perfection—but specific shifts:

• First sleep block extends (1 hr → 1.5–3 hrs)
• Middle-of-night waking becomes less “charged”
• Ability to fall back asleep improves without stacking meds
• The 9pm–3am window becomes less sharp-edged

These changes tend to come unevenly, not linearly.

On your core concern: “is this really my baseline?”

Based on timing and pattern—no.

What you’re seeing is:

• baseline
• plus active noradrenergic recalibration
• plus drug-layer interactions

That combination can absolutely feel worse than either alone.

The key reassurance—but grounded in mechanism, not guesswork—is:

• the driver (NA surge) is already on a declining curve at your stage
• you’re now in the phase where sleep architecture catches up.

Bottom line

• You’re likely weeks, not months, away from a noticeable shift
• Quviviq may become functionally easier even if not perfect
• The fact you nearly fell back asleep naturally is a real marker of progress
• Your handling of diazepam is already aligned with your goal
• The fragmentation you’re seeing is consistent with a system that is unstable but trending toward reconnection