EDS insomnia and quiviviq (part II)

 

This in 2013 in Portmeirion,
on my husband Martin’s and my anniversary.
It strikes me how tired I look in the other photos from that day.
It also strikes me that I had a life and I was often out by the sea.

 

I started tapering off low dose buprenorphine five months ago and the going is still very rough. I’m on day 73 since quitting opioids altogether. I have now used quiviviq for seven nights, and it’s been a roller coaster. Keep in mind that all this time, I have been in withdrawal from several substances (namely buprenorphine, tramadol, quetiapine and THC). The latest on the agenda is diazepam. I didn’t have a choice but to try and sleep on it while the withdrawal was ravaging through my system, and it’s been five months on a fairly high dose. Months were going by and I was getting increasingly nervous about the prospect of withdrawing from this drug, as well. It probably wouldn’t be such a big deal unless my whole nervous system was so sensitised from the other withdrawals. Never mind that my whole GI tract has been in turmoil and the tinnitus soaring. The worst part of it all is the inability to sleep on reasonable amounts of sleep medication. 

I had dropped quetiapine altogether and felt like as if the ground was giving way when I discovered the option of buying quiviviq online. I had known about it for a while and my former rheumy had kindly written to me and my GP about it because he remembered that I struggled with sleep. But my GP said he wasn’t allowed to prescribe it and that was that. I thought it was a matter of time but time went by and there was no change in the protocol. I have now applied pressure on my GP to be more involved, and on Powys Health Teaching Board to make it more broadly available, but there is more red tape than I could imagine: apparently they have discussed making it into an amber drug which means it still has to be initiated by a specialist before it can be moved over to the GP’s responsibility (I didn’t know about the ‘red’ and ‘amber’ classifications until now). 

The problem is that this ‘specialist’ they are referring to doesn’t exist. I’m sure my GP would have referred me to one already if he’d known of anyone who could take on that role. He’s now asking me to come and discuss the issue but I’m feeling too unwell and have other things to deal with right now, so will have to leave it till later. I insisted that the PTHB should not talk over my head to my GP about their recommendations but keep me in the loop. I’m sure they are not happy to do that at all because they just want to wash their hands off it all by offering my GP some generic solution that won’t suit my needs at all. Well, that’s what I suspect anyway. So I’m trying to be as tough as I can be and make sure they also communicate their findings to me. In other words, I want to hear from them directly that there isn’t any specialist in the area who would have the credentials to prescribe the medication while also respecting my underlying health condition. I have too many poor experiences of so-called ‘specialists’ to have any faith whatsoever that appropriate pathways are being created for me. If, per chance, anyone has read my previous blogs, then they will know all this already. So when that happens, I will have to take the case to the higher echelons. 

All in all, the idea of specialist input is ludicrous to me at this point. As usual I’m solving my own problems, and doing so much better without the interference of some opinionated ‘specialist’ who doesn’t know any more than I and AI do. They are likely to make things too complicated for me by asking me to show up and by trying to micro manage my regime while still being unavailable or difficult to contact when I need help. But I would prefer not to pay myself sick for a medication I should be entitled to just like anyone else with a chronic disease!

On to the latest challenges with quiviviq. The point is, I was trying very hard to cut down on the diazepam so it wouldn’t feel like I was vastly overdoing it for months and months on end. But quiviviq doesn’t affect the GABA receptors, while benzos do affect the sleep quality, and so last night I realised my taper was really going too fast. I had a bad night the one before this one, and then the tinnitus started sounding more echoey and obnoxious during the day. I felt a bit tense and unsettled in the evening. I now know these were warning signs of noradrenaline surges that were going to wreck the night. In fact, I was putting my sleep in danger by depriving my body of the benzodiazepine it had gotten used to. As I’m writing this, I realise just how much I hate writing about things like this. I have always despised allopathic practices and the idea that a pill can fix you, and yet here I am, no better than anyone else who’s trying to survive the consequences of a life long chronic illness and find themselves relying on little pills to keep the body together. 

Last night, I had a couple of rice cakes to prime my poor, bloated tummy, took my 2 x 2 mg diazepam tablets and the 50 mg quiviviq at 9 pm, had a quick snack, and soon felt extremely sleepy. This was so unusual it was almost unheard of. I barely even recognise the state of sleepiness. Apparently, my body was deprived of the benzo input and responded to it with voraciousness (i.e., genuine sedation). As soon as I laid my head on the pillow 40 minutes later, I was out. But sleep was extremely restless. It was different from that of acute opioid withdrawal, it was more about trashing about and feeling kind of lively in half-sleep. 

When I finally came to, I decided I was probably under-medicated in regard to the diazepam, and so I had 1 mg, then another mg, and slept a bit better after that. The night felt endless because I was up peeing so often and was wide awake every time - and hungry, and itchy. I ended up taking more sleep aids than I wanted to. While 5 mg diazepam a night seemed somewhat reasonable to me at this stage, I’d now taken 7 mg because of the severe restlessness and fragmentation of my sleep. Luckily AI was in a perky mood that morning (probably because I started a new chat) so it cottoned on quite easily and we made a plan for the following night that took the previous night’s consumption into account. Because of diazepam’s long half life (30-60 hours!), I hadn’t realised I was under-dosing until now. In fact, three nights ago was pretty good with very short wake-ups and no hunger at all, and it lulled me into false safety. But the half life also means that I have plenty in my system today and should ideally use a little less for one or two nights. In practice it means that I will plan on taking 3 mg at 9 pm and then add another after three hours when I’m likely to wake up again. It’s important to act swiftly in order to prevent the excitatory neurotransmitters from running amok. I can then add one more if I wake up in the morning with the sense that sleep will not arrive without it. That’s a total of 5 mg, which I would like not to exceed if possible. I can usually tell pretty quickly unless I find myself in that weird half-sleepy state I was in in the beginning of last night. Once I have followed this regime for one or two nights, I hope to try and stabilise on 5 mg, and unfortunately I have to keep it more or less at the same level for about a month. Timing matters quite a lot as you can see. The next night I might need a bit more at 9 pm in order to get peaceful sleep before the usual longer lasting wake ups start again. AI is pretty helpful when it comes to the pharmacology of Western medications and has predicted that I need about a month of stabilisation in order to get the GI problems and the tinnitus to calm down. I’m not sure when I can restart the taper but it remains to be seen when everything is more stable. 

All this is boring data, I know. But many of us with nocturnal hyperarousal are stuck on old fashioned sleep medications and are likely to be much better off on quiviviq, so it’s important to take the bull by the horn and do it right. The benzos can be helpful, but in theory one should be able to cope without in the end. Or at least on very small doses. The main point of this post is probably to say that not all problems can necessarily be blamed on quiviviq - in my case, the various tapers are very much in the background and the simultaneous taper off diazepam is complicating the biological responses. As AI pointed out, most of my problems are not new, and are therefore unlikely to be caused by quiviviq. The daily headache and the itching scalp and other itching body parts at night are new symptoms, but the GI problems (irritation, dysmotility and distension), the increased tinnitus, the nocturia and the motor restlessness are not. While they have followed me since the beginning of my withdrawal, they are also constitutional issues that were exacerbated by the withdrawal. In addition, I have put on a lot of weight just from going through the withdrawal - it’s a metabolic issue, or recalibration, as AI kindly put it. 

In the meantime, I’m doing okay on the herbal decoctions and trust they quietly work in the background to increase stability. As AI also pointed out, I need stability before I can move on and change things again. I was hoping all this would be over by summer but I can see that this is likely to take an entire year to fully resolve. I’m barely even half way there. It’s a pretty daunting prospect but I just have to grin and bear it while the tinnitus is screaming in my ears and every day feels like another day in the realm of the dead.

Update: This post deserves a report on how the night actually went. I took the suggested 3 mg diazepam with the quiviviq at first, had some sleep, but woke up again after just 2.5 hrs. I made a mistake and took a whole 2 mg tablet instead of half (1mg). Slept a bit but woke up with dreadful leg restlessness. I was literally banging my legs on the mattress and throwing myself around, so much so the knee brace came off and I risked subluxing it. At that point I realised I really had to take another dose of quiviviq. I have been taking rescue doses all this time because the one dose simply doesn’t cover more than a few hours. Other people have reported the same issue. I also have unusually strong noradrenaline surges and subsequent motor restlessness. As hard as it is to fathom, I’m still in withdrawal from low dose buprenorphine, which sent my usual problems through the roof. 

So I took about half a tablet of quiviviq and the restlessness went away like magic. I didn’t sleep that well afterwards because as AI has pointed out, the rescue has to come before the situation gets out of hand. Of course, the reason I went on quiviviq was that diazepam isn’t all that helpful in my situation and I need to come off it. For the time being it helps smooth things out through its GABA action, but it’s not the main controller in this situation. I can’t imagine trying to explain all this to a disinterested clinician. So I try and deal with it by myself, painfully aware AI is not all-knowing by any means, but I nevertheless get to check in every day and brainstorm about the way in which I can realistically come out of this endless state of withdrawal. Today I have a lot of diazepam in the system so should cope on less the next night, but the main point is that the rescue quiviviq has to be taken early enough to prevent the restlessness. I’m so tired today, these episodes are so exhausting and I didn’t get a full night’s sleep.