Butec patch problem.

[dickJones]

After a summer struggling to get benefit from my 10 and 5 microgram/hour Buprenorphine patches - perspiration in the heat compromising their effectiveness - the cooler temperatures from September on have given me relief from my PLMD and some blessed long-scale REM sleep such as I haven't experienced in years. And of course the overall effect of this on my physical and mental well-being has been dramatic!

But quite suddenly the past 3 nights have been wrecked by a combination of just short non-REM sleeps - generally 30 to 50 minutes in duration - and interval periods of insomnia. This resonates with some of my summer nights, but now the patches are completely secure. I know that a somewhat counter intuitive side effect of Buprenorphine can be insomnia, but it seems very late in the process for that to be a possible explanation. And if it is, how do I deal with it?

Most of us who post here do so from desperation. Our lives are hostage to conditions that threaten the integrity of our nights and days and undermine both physical and mental health. To have found relief through a medication after years of struggle and then to have that escape from suffering threatened is difficult to endure. I wonder if others have experienced this sudden complete nocturnal drop out of effectiveness with Buprenorphine, either in patch or sub-lingual form. Your comments and observations would be most welcome.

[Madlegs1]

I suspect a trigger at work here?Any changes in your diet or medication before the change?

[dickJones in reply to Madlegs1]

No dietary change, no alcohol close to sleep time last night. I had one beer at 5 PM-ish, but that should have been out of the system by 11 PM. And no alcohol at all on the previous occasions of the aberrant patch behaviour. I'm currently withdrawing from 1800 mg of Gabapentin and am now down to 1200. But the Buprenorphine has previously shown no impact from that (apart from the first dodgy night when I accidentally dropped my G dosage down to 600 mg).

[SueJohnson]

I suspect it is the reduction of gabapentin. It may not have seemed to work but it may actually have helped. You might want to go back up to the last amount you reduced from and see if that helps.

[dickJones in reply to SueJohnson]

The Gabapentin would seem to be the obvious culprit, but it doesn't really fit the bill. I was on 1800 mgs, my top Gabapentin dosage. I reduced to 1200 a couple of weeks, ago without any impact on the patches and remain at that level now. I could return to my full dosage and see what happens, but the de-titration seems to be working fine.

[Joolsg]

I'm sorry to hear this. Imsomnia/ wakefulness is a common side effect of opioids.You could try medical cannabis or ask your doctor for a small dose of pregabalin as that has a sedating effect and will counter the wakefulness..

Edit: I've just seen that you reduced your gabapentin dose. Gabapentin has a sedating effect so that would explain the change.

[dickJones in reply to Joolsg]

Thanks for the response, Joolsg. As things stand, medical cannabis is not acceptable as an option for PLMD at my surgery. In fact, I had to explain PLMD itself so there would be a long slog ahead to even get the possibility considered, during which journey my problems would simply accumulate. As for Pregabalin, that gave up on me after a decent year on maximum dosage at the end of 2021. And the Gabapentin de-titration began 2 or 3 weeks back and the drop from 1800 to 1200 had no effect on the proper functioning of the patches at that time.

[LotteM]

In addition to Madlegs reply, have you increased your activity levels recently? Not that that specifically affects the sleeplessnees / REM sleep. But I found it reduced effectiveness and I had to increase my dose.

Otherwise something else that has affected your (REM) sleep? E.g. we (The Netherlands) just changed to 'wintertime' and quite a few people have trouble adjusting and become temporarily out of sorts. Or a new vaccine shot?

Anyway, I hope it just settles soon. It may be worth to wait and see a bit longer. Although I fully understand your need to understand the trigger or cause of the change.

[dickJones in reply to LotteM]

There have been no significant changes in routine that I can think of. We too have gone from summer to winter time, but would that have been a dramatic enough shift in day/night patterns to account for such a total dropout in the patches' operation. I will give it a night or two more before ringing the doctor (not very optimistically!) But at 77 the wear and tear on the physical/mental resources is heavy.

[Jelbea]

I was on Butec patches for quite a while before changing to sublingual buprenorphine.

I had the 15 mcg strength 7-day patch. For the first few months they worked very well. Then as time went on I found the patch was not lasting seven days - just about five days. A further few months down the line the patch was only working for three days at the most. At that stage I had been allowed to change them every six days but it really made no difference.

I do hope this is not the case for you and that you get things sorted satisfactorily. I see you mention " the physical/mental resources". For me the ups and downs in the treatment from day to day took its toll very much.

Good Wishes

[dickJones in reply to Jelbea]

Thanks, Jelbea. The outlook's bleak, I think. It's difficult to trace a pattern, even though I take detailed notes of times, sleep lengths etc. There are other factors to take into account, such as CPAP mask malfunction (I have sleep apnea too). But the previous 7 day sequence started to break down on night 4 into short non-REM sleeps and insomnia and this sequence on night 3 looks pretty crap too. We'll see. How are you finding the sub-lingual Bup?

[Jelbea in reply to dickJones]

Hi dickJones - I had to increase the Temgesic ( sub-lingual bup) to 700 mcg daily. It did not work for me taking it just in evening as some others are able to do. With me I was having bad withdrawal symptoms during the day, mainly anxiety and depression. Prof. Walker suggested taking 100 mcg first thing and again at lunchtime. It was keeping RLS at bad.

However, I have been developing hoarseness especially noticed in the mornings and as this is one of the side effects I may have to go off the bup. I cannot think of anything else which would cause this and I feel it may be associated with the acidity of the tablet.

Anyhow many others do not have this problem and seem to be managing the sublingual type very well. I do hope you get your bothers sorted ASAP. Sometimes it seems we cannot win no matter how hard we try.

[Johan10]

To have such a sudden lack of help from the patch suggests to me that there is a trigger. If it were tolerance this would be a gradual decline?The change to winter time seems to fit and in my experience even an hour shift can mess up the body clock.

I empathize massively with the destruction in life quality that comes along with this condition but believe gradually or even suddenly you'll recover from this glitch. All the best.

[dickJones in reply to Johan10]

Thanks, Johan. The anomalous break in relative patch routine does appear to suggest another source. And if so innocent an event as the summer/winter shift could have disruptive effects then I guess that's a possibility. But somehow that doesn't feel right. I'm sleeping in a pretty much light sealed room so until I actually get up and open the curtains I have little or no idea of the condition of the day.

As stated elsewhere, I'm currently withdrawing from 1800 mgs of Gabapentin and although the de-titration to 1200 seemed to have no immediate effect, it's more than possible that it was too big a jump down. Last night I went back up to 1800 and after a short scale start, I managed 3 decent REMs. I'll reduce the reverse dosage to 300 mgs every 3 nights and see what happens.

Thank you for your encouraging words. With little or no professional guidance and help, we're often working blind and the support of our fellow battlers is much appreciated.

[Joolsg in reply to dickJones]

Just a thought. Gabapentin withdrawal can produce very severe side effects so if you do want to get off Gabapentin, why don't you slow down the reduction substantially. If you're back on 1800mg, maybe reduce by 100mg a week. It will take 18 weeks but that way, you may not experience the wakefulness. Restlessness and anxiety are common side effects.

[dickJones in reply to Joolsg]

Thanks, Joolsg. Yes, that would be the wiser way of doing things! Because I missed 600mg one night and experienced no ill effects, I decided to leave the dosage at 1200 for a couple of weeks and then de-titrate further. I've restored the full 1800mg and will now reduce by 100mg, as you suggest.

[Truthsword]

Just a wild guess: glutamineMy gabapentin wasn't working as well last night...but...i cheated on the glutamine diet and had some tomatoes(guacamole). Raging rls! Took a Tramadol to calm it down. Im also going off Requip. The less the dose...the faster the gabapentin works. Cant wait to get off the rotten stuff. Augmentation has been off the charts. The glutamine diet is also the autusm diet. Low glutamine seems to help. No MSG, tomatoes. Spinach,dried fruit, fried food, commercially made sauces.

[dickJones in reply to Truthsword]

I don't think glutamine's an issue. My diet's pretty balanced because of GORD. More likely it's an interaction of Gabapentin and Buprenorphine, much as suggested in other responses to my original post.

[Typicallygaslit]

Have you considered that your health may have deteriorated? I have deteriorated pretty quickly in the last few months/couple of years. It’s not necessarily a straightforward decline. It’s a neurological problem. The sensitivity to serotonin inducing substances is growing, but it may not be linear (e.g. summers may be worse in general). I hope it won’t keep going down like this though. After a long battle I was able to get Temgesic sublingual tablets and it’s helping a lot. They actually make me go into half-sleep quite easily. I sure hope this effect will carry on, too. I wouldn’t be happy wearing patches.

[dickJones in reply to Typicallygaslit]

Maybe, Typically... I'm 77 and the health slope steepens year by year. I've just had full bloods done. Fingers crossed, but if anything's untoward then I'll get a heads up from the doc. For what it's worth, I feel fine!

[Typicallygaslit in reply to dickJones]

Well I meant specifically in regards to RLS. There are no tests that can be done to determine whether there’s deterioration, it’s entirely subjective. The nervous system slows down as you age. There’s less dopamine which could lead to more serotonin, stuff like that aggravates the RLS. Foods that used to be ok may now trigger RLS, so reactions to food is one thing to observe.

[dickJones in reply to Typicallygaslit]

All true enough and I wish that the medical profession would acknowledge RLS/PLMD and initiate the kind of research that might expose and address those health issues - particularly in age - that aggravate our conditions. But I ain't holding my breath!

[Typicallygaslit in reply to dickJones]

It’s very fringe research and then you get beaten over the head when you know more than the bs doctors. I’m 56 and I can see that age related neurological deterioration is very real, and it’s frightening. I hope you’ll figure out what’s causing your set backs and perhaps report back to this forum

[restlessstoz]

Hi Dick, I have read the posts and wonder if, given that it can take three weeks to feel the positive effects of increasing the dose of gabapentin, whether it can also take up to three weeks to feel the decrease in dose? This would explain the sudden appearance of insomnia perhaps.

I am one of those people who are made alert by opioids and need gabapentin to allow me to get some deeper sleep. I do hope that you can solve this riddle. Don't despair, it may only be a tweaking that's necessary.

Don't also underestimate the change in summer/wintertime to your body. Even that one hour can have a big effect on your whole cycles. Good luck in finding your peace again.

[dickJones in reply to restlessstoz]

Thank you, Restlesstoz, peace restoration is the main aim! You may well be right about the delayed effects of dosage reduction. I've now gone back to my original dosage, although I'm certain that I'm now resistant to the Gabapentin. I shall now manage the de-titration more sensibly and hopefully the effectiveness of the patches will be restored. Thanks again.

[HipHop1972]

Hi Dick, I really feel for your suffering and I was the same when My 4 mg Neupro patches stopped working and I was put on Ropinirole which was first line treatment but now it’s the bad boy as it’s so hard to get off. I’m in that process at moment and likely to take just under a year. So yes it’s tough out there but lots of good advice from some incredible people ie. Sue and Joolsg. to name but two. I find it comforting to know that we’re not alone out there but you have to get your GP on board, not always easy as they have little knowledge of RLS.

Best wishes

[dickJones in reply to HipHop1972]

Many thanks, HipHop, for the kind words of support. I made adjustments to my Gabapentin dosage and currently Bs ance has been restored. Yes, the level of expertise here is very high and it has the huge advantage of being empirical. Whilst I've had personal support from a couple of GPs over time, my progress through medication for PLMD over 11 years has been almost entirely self managed. And to guide that process I always come here. This forum is invaluable! All the best to you.