Stabilising buprenorphine dose

[davchar23]

After months escaping from DA augmentation and with the help & support of many in this community I reached a period in late 2023 when I started on buprenorphine patches. My GP did a calculation (?) which indicated I needed a weekly 10mcg/hr patch and this is the level i initially used. The GP told me to replace the patch before the week's duration if i felt it was not being effective.

The problem I found with the patches was how do you know whether the patch has lost it's effectiveness or that it simply is not giving enough buprenorphine for your situation.

After 3/4 days my RLS was breaking through or so I thought! Perhaps mistakenly I therefore added a second 10mcg/hr patch after 3/4 days and found that this blocked RLS.

Please consider at this point I was worried about:-

- how long it takes for a patch to become effective (there are various opinions on our site)

-does a warm shower effect the patch (the instructions are not clear)

- was I absorbing 10mcg/hr or 20mcg/hr or something in between?

-the nausea that I had experienced previously with opiates got worse.

So because of the above problems with patches I persuaded a reluctant GP to prescribe tablets and the calculation said 2x 200mcg before bedtime daily. (ie 400mcg per day)

Result:- Zero RLS but increased and severe nausea

Decision made to revert back to patches as nausea didn't seem as bad with those.

In the end not much difference in nausea and also it was difficult to know what level of buprenorphine was being absorbed.

The logical step seemed to be to use a low rate patch (ie 5mcg/hr) and top up with tablets (even if it means using part of a tablet).

Result:- Despite taking Zofran Anti nausea tablets and trying several other anti nausea remedies is that the nausea is still quite severe and wakes me every morning. It gradually decreases during the morning and I am free of it and RLS for the remains of the day.

Opinions vary on the buprenorphine -nausea cause and effect

-The problem is because i have swapped about too much between patch & tablet

or it is a problem caused by too many varying doses

ie mode of application versus variations in dose

Perhaps both opinions are correct and i simply have to find the level of buprenorphine by being more patient. Therefore i have decided to proceed as follows:-

1) I currently have in place a 2/3 days 5mcg patch and i will tonight top up as necessary with part or whole of a 200mcg tablet. I am also on an extended Zofran course as advised by a member of the community (needs 1-2 weeks to be effective for RLS nausea?)

2) When the patch is 4 days old I will remove it and the following day go onto 2x200mcg /hr tablets and provided that covers my RLS I will stay on that and concentrate on "treating " the nausea side effects.

I would appreciate comments and suggestions and fellow sufferer's experiences on this topic please

Kind regards

Davchar23

[RiversW]

Davchar23, Please let us know how your process works. I for one am very interested. Good luck Rivers

[707twitcher]

I’m sure you know, but just to clarify one point. The pills are immediate release of the full dose while the patches release medication (hopefully) evenly over their life.

Sticking with pills for several weeks will at least be simpler and hopefully you stabilize. That is still a reasonably low dose.

Good luck!

[davchar23 in reply to 707twitcher]

Thanks for reminding me.

I needed 1.5 tablets last night (one at 11pm and half at 1pm) to block RLS. The 5mcg/hr patch i still have on was only 3 days old but I continue to be concerned about the release mechanism (you say "hopefully") and I am not so sure how they respond to warm (not hot) showers despite the drug instruction leaflet. My chemical engineering background tells me that if you wet and increase the temperature of an item it releases "contents" faster! I have even bought some thin film sticky covers for use over patch when showering taking great care not to disturb seal of main patch on removal

Next step in "plan" is to remove patch this evening and gradually increase tablets (200mcg each) from zero to 2 as needed.

Kind regards

Davchar23

[RiversW in reply to davchar23]

Davchar,

Only anecdotal but maybe helpful.

I just returned from a holiday where I spent 9 days swimming in very warm water. At times at least 86f/30c for up to an hour a day. I wore the patch on my upper thigh, covered with micropore adhesive tape to make sure it remained sealed and in place. I understand in both instances that this against the recommendation of the manufactured. During the 9 days on holiday, I never had a problem with RLS. I might add that being very active, as I was on this trip, has never succeeded in preventing RLS from invading my days and night in the past.

As we have discussed before, I use a 20 mg patch and change every 5 days because the patch does not prevent my nights from being disturbed by RLS.

Take care, Rivers

[RiversW in reply to RiversW]

One more thing Davchar, I wore the patch on my thigh to keep it away from sunlight and of course, not to mess up my tan! R

[SueJohnson in reply to RiversW]

Maybe you should keep the micropore tape on it at home😀

[RiversW in reply to SueJohnson]

Thx Sue I will try.

[davchar23 in reply to 707twitcher]

Ok plan phase 1 achieved namely patch removed last night and used 1.5 x200mcg tablets. Slept well (minimal RLS) but still nausea although didn't seem as bad (perhaps wishful thinking). Quire a few interesting replies to my refreshed post all with general theme that patches are "difficult" and even suggesting that they might go off the market although ot sure why? Certainly 3/4 days looks like the optimum.

Tonight provided i can sit without RLS until bedtime i will take two x200mcg tablets as patch bupre will have diminished somewhat.

Will keep you posted

Kind regards

Davchar23

[davchar23 in reply to 707twitcher]

Dear Twitcher707,

Just to keep you in the loop i have now been on 2x200mcg bupre tablets and No patch for a couple o days. I also take a Zofran anti nausea tablet every 12 hours (will do this for 10-12 days). I take the 2 bupre tablets at about 10pm & midnight each night and thinking about your comment on immediate release i wondered whether I might be getting a mini opioid withdrawal late morning/early afternoon (not RLS but hot/cold sweats etc)?

I think we said that the half life of bupre is 24-36 hours and so I should not have a problem?Kind regards

Davchar23

[707twitcher in reply to davchar23]

Sounds like it’s going well. Yes, buprenorphine has a long half life (30+ hours). But there are studies saying the period of effectiveness is limited to about 10 hours. I don’t understand the pharmacokinetics behind this distinction of effective half life vs. elimination half life. But I’ve seen lots of comments that buprenorphine’s long half life does prevent withdrawal symptoms. I believe you experienced similar reactions when you were on the patch, right? If so, that would seemingly rule out withdrawal because of the patch’s constant release.

[davchar23 in reply to 707twitcher]

Dear Twitcher707

Hope you are well ?

I would like your opinion on my current situation which seems to be tied up with the half life of buprenorphine etc

I decided to stick with 2x 200mcg sublinguals for a long period due to "doubts" concerning patch effectiveness period. i take these two tablets at approx 9pm and 11pm each evening and experience zero RLS. great except that the side effectie severe nausea is causing me nearly as much concern as RLS itself. The nausea starts at various times during the night and prevents even an average sleep regime.

By breakfast time (I cannot face food until about 11am)) the nausea starts to subside and by early afternoon has more or less gone. This would seem to indicate a half life of about 10-12hurs? I noted from one of our exchanges that if one maintained a steady dose of sublingual then the buprenorphine in your system after 1 week is 300% more than expected from a patch.

My concern is that I have not been on the steady 2x200mcgs for mlonger than a week and the nausea is getting worse.

I must admit i am not sure what to do about it. I have not had any success with anti nausea drugs eg Zofran, ginger, etc and have started a probiotic Symprove. I also intend to get some cannabis as advised by Joolsg

Best regards

Davchar

[707twitcher in reply to davchar23]

Before switching back to the patch, I can think of two things to try:

- take both pills together earlier- maybe 8pm. See what that does for your RLS and nausea

- try cutting back to 1 1/2 pills.

I’d try the earlier time first, then the pill cutting a couple days after. Then I might try some of the OTC anti-nausea medications. You’ve given the Zofran enough time by now, haven’t you?

Good luck.

[davchar23 in reply to 707twitcher]

Dear Twitcher707,

Thanks your reply & support. I will give your two options a go of course but I wondered what the logic behind the earlier time is?

I know that Jools thinks i have changed tings too quickly but quite frankly this latest scenario makes me think 6 hours of RLS 10pm to 4am is better than this as i feel terrible and today the nausea and sweats have returned immediately after a very light supper.

i am really begiining to think that the half life of buprenorphine sublingual tablets isless than18hours as i can feel RLS coming back now at 7pm (last tablet was 11pm last night.

Regards

Davchar

[707twitcher in reply to davchar23]

Have you traditionally had RLS symptoms at all hours of the day, rather than just evening or night? I was assuming your RLS was typically worse at night. My thought was taking the pills at 8pm would enable them to be fully effective for most of the night (at least 10 hours), and the side effects might ebb sooner than you are experiencing now. Of course, the nausea could start sooner - you'll have to see which is worse for you.

I really don't understand buprenorphine's half life and effective life. I do know from personal experience that it can take a couple weeks to stabilize when you do make changes. I don't think the timing change (taking together and earlier) or even cutting back half a tablet are major changes, but you'll have to be the judge of that.

I don't understand why you have been so reluctant to try cannabis? I'd try that, and maybe other OTC anti-nausea meds, before anything else.

[davchar23 in reply to 707twitcher]

Thanks your reply. You are right in that my RLS has been the typical timing ie approx 9pm to 5am. Ok so i see your logic. Lets see I took 2 tablets (400mcg) at 8pm and of course the RLS that had just started to "warm up" went and some nausea that i surprisingly encountered after supper (about 6-30pm) went as well. In fact at this point in time ie 10pm i feel as good as i have all day.

I am being very open with my doctor because he has by UK standards been quite supportive of my RLS and although i know he cannot prescribe cannabis i want him to know I am going to trial it. i have an appointment with him next week if i can hang on that long before i order some.

Thanks again and hope you are well. i have been watching "The Masters" from your beautiful Augusta.

Regards

Davchar

[davchar23 in reply to 707twitcher]

Dear Twitcher707,

I thought I would let you know how I got on with 400mcg all at 8pm

I got a reasonable night's broken sleep of 5/6 hours although troubled throughout by nausea and when waking up.

I cannot decide whether to repeat tonight or try the reduction method you suggested ie down to one and a half tablets ?

What do you think?

Davchar

[707twitcher in reply to davchar23]

If your RLS was completely controlled with the 400mcg, then reducing that by 50 mcg or so seems like it’s worth a try.

[davchar23 in reply to 707twitcher]

Of course i agree but the main thing is will the nausea reduce or come on earlier.

Thanks your support

Davchar

[LotteM in reply to davchar23]

Dav, you will only know if you try. Reduce a tiny bit, stay on that dose for at least a week (wait for stabilisation if that changes your situation). And only reduce further if you are up to it.

[davchar23 in reply to LotteM]

Dear Lotte,

Thanks your advice and yes I will as I really need to sort out this nausea which is having as much of a serious effect on my life as did the original RLS

I really don't understand it fully and why it starts immediately after the first time I get up in the night to go to the toilet. I get back in bed and the nausea starts and is immediately quite severe?

When I eventually get up in the morning the nausea is quite bad but gradually eases during the day until early in the afternoon it is quite acceptable although not quite zero.

Hope I can get to a successful conclusion on this as it is very very draining

Kind regards

Davchar

[707twitcher in reply to davchar23]

I know that you keep mentioning your symptoms possibly being withdrawal-related. I suppose anything is possible, but I've never seen any mention here or elsewhere about buprenorphine withdrawal symptoms occuring any earlier than two days after the last dose of buprenorphine, and even then typically with much larger doses used for addiction treatment. This would mean that your symptoms are caused by a reaction to the drug, not a reaction to withdrawal from the drug. Now that you are somewhat stabilized, I would think that seeing what happens with a small reduction in dose would either confirm this (by having your side effects diminish a bit with a reduced dose) or indicate that you are really quite unique in experiencing withdrawal symptoms this way (if your RLS doesn't act up but your nausea and cold sweats get worse).

[davchar23 in reply to 707twitcher]

Der Twitcher707,

i appreciate your reply and thks your support.

I am sure you are right my nausea is certainly not a buprenorphine withdrawal scenario but is a reaction to the drug. i have tonight reduced drugto 1.5 tablets and lets see what happens with both RLS & nausea.

i do appreciate being able to talk about it. Our NHS system in UK is so over stretched that i have been trying to talk to my GP for 3 days without success.

Kind regards

Davchar

[LotteM in reply to davchar23]

Davchar, don’t reduce every day. Stabilise yourself first for at least say 4 days, before you start the next reduction.

Or did I misread your text?

[davchar23 in reply to LotteM]

Dear Lotte,

Thanks for keeping in touch but I think on this occasion we might have a misunderstanding.

The reduction I am planning , at least initially, is as suggested by Twitcher707, to see if the nausea is reduced prorate to the buprenorphine.

So last night I took 300mcg at 8pm and went to bed at 11pm. i was unable to sleep not because of RLS or nausea but I suspect because of the insomnia side affect of opiates. Normally taking the drug immediately before sleep means I get to sleep before it takes effect. The rest of the night comprised very little and only intermittent sleep until at about 5am RLS started to show itself and by 6am I had to take another 200mcg which enabled me to sleep but brought on the nausea but perhaps at a slightly less strength

As i write I am not sure what my next move will be

Davchar

[LotteM in reply to davchar23]

Davchar, I find that when the RLS comes through an existing and earlier (that day/night) effective dose, adding half or even a quarter 200mcg pill suffices. Something to try? As you seem so vulnerable to the nausea side effect.

[davchar23 in reply to LotteM]

dear Lotte,

Thanks for that and of course you are right. It was just that 6am in morning I was too lazy to try half a 200mcg.

Thanks and best regards

Davchar

[LotteM in reply to davchar23]

I understand totally. At that time and with rls, one usually is exhausted. I guess you were too

[davchar23 in reply to 707twitcher]

Dear Twitcher 707,

I hope this finds you well?

my experiment with 300mcg at 8pm went as follows:-

-went to bed at 11pm but could not sleep

-not caused by RLS or nausea but appeared to be simply the opiates side effect causing me to be "alert"? Taking the drug at bedtime may be normally bypasses" this side effect

-intermittent sleep until at 5/6am RLS started to break though and forced me to take another 200mcg

-got some sleep as a result but also brought on the nausea although perhaps at a lesser strength

I think this "proves":-

1) My nausea is directly linked to the amount of buprenorphine taken as it did not appear until I took the extra 200mcg at 6am

2) Whilst accepting that each person reacts differently to opiates there is, as you have said, a great deal of doubt surrounding the half life and effective half life of buprenorphine. In my case the effective half life is certainly not 24-30hours +. if that were the case then the 300mcg at 8pm plus the left over amount in my bloodstream would have prevented RLS to break through at 5am?

I am not sure what my next step is except perhaps to take 300mcg at 11pm (my bed time) to "bypass" the insomnia and to hopefully get me through to say 7am with a reduced nausea. Unfortunately I cannot see this tactic eliminating my nausea but it might help a bit.

Any thoughts would be appreciated

Davchar

[707twitcher in reply to davchar23]

My conclusion would be that 300 mcg isn’t enough for your RLS. I’d go back to 400, and maybe experiment with timing for a few nights - 8pm vs 11 pm, or something in between. Once you find the optimal time and stick with that, then maybe try cutting back - but to 350, not 300.

Given how your symptoms seem to vary widely, I wouldn’t jump to conclusions based on one night’s results. I think you need to look at overall results over a several day period. So any changes should be small and infrequent.

Hopefully you work out the cannabis situation with your doctor this week and that helps. 🤞

[davchar23 in reply to 707twitcher]

Thanks your reply and understanding. Points all noted. I think you are right 400mcg is the level i need to block my RLS. Of course that means nausea either middle of night or early morning. I agree that i am trying to judge things on the odd night or two but i seem to have been trying to stabilise my meds for so so long now.

i will let you know how i get on

Kind regards

Davchar

[davchar23 in reply to 707twitcher]

Dear 707 Twitcher,

Since I last posted to you I have been in van trying to get an answer to the buprenorphine/nausea problem

I have gone back to 400mcg as you predicted and have tried different times and dose "splits". None have given me any solace on the nausea front. We seems to start earlier and earlier in the night and continues sometimes until lunchtime next day.

Constipation theory of my GP (ie remove it) tried & tested and did not help nausea.

I am currently dosing 400mcg (100 at 7pm and 300mcg at 11pm). The 7pm 100mcg is needed to stop RLS in early evening when watching TV etc The nausea starts at variable times between 3am & 6am

As i know you think a lot about buprenorphine half life and effectivity i wondered if you could comment please?

Best regards

Davchar

I

[707twitcher in reply to davchar23]

Not sure what you mean by constipation theory - remove it?

I wish I had more advice to offer. My side effects are different than yours, so I haven't had to deal with nausea. All I can say is it certainly looks like Zofran isn't helping. I would strongly suggest trying cannabis and/or some OTC nausea remedies like Pepto Bismol, Emitrol, etc.

I was intrigued by the chain of posts started by DesertOasis yesterday about Tramadol. She recommends using it for a few months before switching to another opioid (like buprenorphine). Apparently it might serve to repair dopamine receptors. She seems to stir controversy, and many people here are adamant about not using Tramadol because it is the only opioid that will augment. But I'm thinking of trying it for a few days at least to see if its side effects are any better for me than buprenorphine. I'll let you know. It might be more acceptable to your doc than methadone.

[davchar23 in reply to 707twitcher]

My GP's theory was that the constipation caused by opite was resulting in nausea. It appears he was wrong. He has now prescribed Metoclopramide (10mg)?

Yes Deser Oasis's post was interesting and i have always avoided Tramadol for the reason posted by many. I will be interested in your results if you trial it.

I think the Pepto Bismol is similar to Gaviscon and I have tried that.

Kind regards

Davchar

[dickJones]

Most who have used the patches and reported here have noted that the actual efficacy duration is about half that of the manufacturer’s claims. For me, this anomaly plus the tendency of the patch to lift up and peel off in contact with water had me switching to sublingual tablets. I’ve been on the latter for a year now with just one titration and to date they’ve eliminated my PLMs (I suffer from PLMD, not RLS).

[davchar23 in reply to dickJones]

Dear dickJones,

Thank you for your reply and useful comments. I have also found that the actual efficacy duration is between 50 & 70% of stated claim. In my opinion one of the possible reasons is exposure to moisture and even small temperature changes.

Regards

Davchar

[dickJones in reply to davchar23]

Hi man. Definitely go with Joolsg’s advice. Once the medical professionals wake up to the entirely benign (inevitable side effects notwithstanding) low dosage Buprenorphine sublinguals, the patches will come off the market.

[Joolsg]

Hi Davchar,Just to confirm my opinion, stated in reply to your other post, I think you should switch to pills and take 0.4mg at night, and stop switching between the patch and pills. I think your RLS would then stabilise and you can concentrate on fixing the nausea.

Nausea could be caused by opioid withdrawals when you're switching dose and method of delivery.

[davchar23 in reply to Joolsg]

Dear Joolsg,

Yes I think you are correct and tonight i will be going directly on to 400mcg tablets.

Thanks

Davchar23

[davchar23 in reply to Joolsg]

Dear Joolsg,

I am now a couple of days into my plan to stay on 2x200mcg Buprenorphine tablets and am taking them both late evening. So far free from RLS and reasonable nights sleep.

I am also on an extended Zofran anti nausea tablet every 12 hours. I feel especially "rough" each morning and put that down to the nausea but i also wondered if i might also be going through a "mini withdrawal" say 10 hours after taking the 2nd tablet (ie at 11pm). Is it reasonable to assume that the buprenorphine in the tablets will sustain me through the following day? I was working on a half life of 24hours?

Kind regards

Davchar23

[Joolsg in reply to davchar23]

Yes. Buprenorphine pills will last 24/25 hours so it's unlikely to be mini withdrawals. More likely your body adjusting to the new regime. So now, stay on this regime and concentrate on settling the nausea.If zofran doesn't work, medical cannabis might.

[davchar23 in reply to Joolsg]

Dear Joolsg,

Sorry to bother you again but I am now over a week into my stabilising plan ie 400mcg (2x200mcg) tablets daily. and i am still struggling with what seem like mini withdrawals by late morning. The last patch was taken off about a week ago and now I take the 2 x200MCg buprenorphine tablets at approx 9pm and 11-30pm each evening. The nausea is still a real problem but i cannot understand why I feel so "weak" and "achy" as well.

My GP has suggested trying several other anti nausea drugs before i go to cannabis and first up after Zofran (which i took until this morning) is perchorperazine)

I wondered if you had any comments as to my current dilemma please?

kind regards

Davchar23

[Joolsg in reply to davchar23]

neurologycenter.com/neurolo...

Sadly, prochlorperazine is a sedating anti nausea med which may well worsen RLS. It's listed on all RLS websites as a med to avoid.

So, you could try it for a few days and you'll soon know if it worsens RLS.

Why is your GP so against medical cannabis? It works for chemo nausea when other drugs have failed.

I can't comment on the 'weakness' and aches as I have not experienced them and they aren't listed as side effects.

If this regime is covering your RLS, that is a positive.

Now, if you can control the nausea, you will be in a good position.

I still think medical cannabis is a better option. I personally would NOT take prochlorperazine.

[davchar23 in reply to Joolsg]

Dear Joolsg,

I was following a post recently on nausea and buprenorphine in which a fellow sufferer said it worked for bupre nausea and did not bother their RLS. The Zofran certainly didn't work but now i am worried about prochlorperazine but will try it for a couple of days I haven't discussed medical cannabis with my GP. i have "pressurised" him enough on opioids and to then try to get him to proscribe cannabis i think would be difficult so i will do it privately if other avenues don't succeed.

i tried an extra 200mcg tablet earlier today to see if that helped my "feeling really rotten " scenario....it didn't When i was on tablets previously i noted that two( (ie 0.4mg/day was not quite enough to block RLS totally

I am getting very concerned that long term bupre is casing all my recent problems of nausea, weakness, tiredness , and a general feeling of not wanting to do anything and perhaps i need a little more to block RLS completely?

Kind regards

Davchar

[Joolsg in reply to davchar23]

Whatever you do, choose ONE type of Buprenorphine and ONE dose and don't chop and change. Otherwise you may experience mini withdrawals and suffer the symptoms.You can try the prochlorperazine for a few days to see if it helps the nausea. We do respond differently to meds.

And if you really feel so terrible on Buprenorphine, with nausea, weakness, aches, tiredness and malaise, you might still be experiencing depression caused by the dopamine agonists.

[davchar23 in reply to Joolsg]

Thanks your reply. I have been sticking to one dose and one type of buprenorphine for last week and so i assumed any excess buprenorphine would be gone by now and i am just dependent on 2x200mcg sublingual tablets.

i am not clear is the prochlorperazine a DA or not? i am really now concerned about taking anymore and of course my GP doesn't know any better when it comes to RLS so he just accepted that the forum had reported that prochlorperazine was suitable for nausea and did not cause RLS. it is like the blind leading the blind?

My feeling is that it is the Zofran that is causing me the other side effects other than nausea

Davchar.

[davchar23 in reply to Joolsg]

Jooolsg,

I just read the reference article and prochlorperazine is listed there as a DA? I didn't realise this and I wont be taking any more for certain. Thanks for that and i hope that I haven't done any damage to my "plan". Until i can get to see the GP again i will go back onto Zofran I think .

Kind regards

Davchar

[Joolsg in reply to davchar23]

It's a dopamine antagonist so reduces dopamine in the brain. Different to a dopamine agonist which increases dopamine in the brain and causes augmentation.

[davchar23 in reply to Joolsg]

Sorry i did not notice the difference in the article., but either way i suppose it is messing with the dopamine and that could cause RLS? I only started taking the perchlor earlier today and tonight by 8pm the RLS has broken through badly... could it really cause it so quickly or is it simply that 0.4mg per day bupre is not sufficient.?

I will take my second tablet now and hope that is enough.

i do really appreciate your patience with my situation..thank you

Davchar

[Joolsg in reply to davchar23]

Yes it can work that quickly to worsen RLS. If you take a sedating anti histamine, within hours your RLS will be worse.So stop perchlor and take a consistent dose of Buprenorphine for at least a week. So either 0.4 or 0.6mg for a week. If RLS is under control, great.

The tiredness, aches should resolve. The nausea may continue, in which case, you may need to buy medical cannabis.

[davchar23 in reply to Joolsg]

Dear Joolsg,

Thank you for your as usual nonsense reply and of course putting on the right path. I have stopped the prochlorperazine already and will stick to .4mg buprenorphine for time being but I think as you mention i may need a bit more. Your point on nausea and cannabis noted!

Thanks Davchar

[Joolsg in reply to davchar23]

dc.etsu.edu/asrf/2024/sched...

Hi Davchar,

I suggest you show this research paper to your GP.

I strongly believe Buprenorphine is responsible for your nausea but DAWS does cause nausea, anxiety, pain, panic attacks.

If you stopped your dopamine agonist too quickly, some of your symptoms may also be continuing DAWS.

The sudden drop in dopamine can affect everyone differently.

Try to raise your brain dopamine by eating a dopamine diet and doing things that give you pleasure.

The symptoms will probably settle, but it may take some time.

Ask your GP to look at the article and information on DAWS.

I'm sure it will settle, as your brain dopamine receptors adjust.

[davchar23 in reply to Joolsg]

Dear Joolsg,

Thank you for the DAWS case report which i have read and will discuss at my next appointment with my GP.

In the meantime though I could if the article is correct try a couple of days of a DA which would prove DAWS or not? I don't remember how quickly i withdrew from rotigotine patches but it was now nearly 7 months ago. My concern is ,like you, i said I would never use DAs again? i wouldn't want to have to escape (if I have not already done so) from augmentation again.

What do you mean by a "dopamine diet" exactly? ie you mean things that you know triggers RLS?

Looking at the DAWS symptoms I certainly qualify for several (except vomiting ).

Kind regards

Davchar

[Joolsg in reply to davchar23]

ndtv.com/health/here-are-9-...

Like you, I would not go back on a dopamine agonist.

I know that in this case his symptoms improved, but that is a temporary fix and he still has to get off the dopamine agonists slowly.

In your case, as you are off DAs, I would take the time to recover by eating foods that increase dopamine.

[davchar23 in reply to Joolsg]

Dear JoolsI

Thanks your reply but I already do concentrate on the foods listed except strawberries (I will now eat more) because of their sugar content and whilst I am not yet pre diabetic I am not far off.

I I am suffering from DAWS and I do not want to ease it with a short burst of DA to check (which i do not) then what is the answer...just to stick it out? Like you I think 7 months down the track for the last rotigotine patch (2mg I think) I must accept that buprenorphine is causing the nausea?

Best regards

Davhcar

[Joolsg in reply to davchar23]

Yes. I think Buprenorphine is the cause of the nausea.

[davchar23 in reply to Joolsg]

Dear Joolsg,

I had a reply from a fellow buprenorphine user who said the they tried cannabis oil and found it increased their reluctance to eat. Did you find the same?

I wondered whether going back to taking Omeprazole (which i used to use for hiatus hernia) but dropped because it might trigger RLS, might help?

Best regards

Davchar

[Joolsg in reply to davchar23]

No. Cannabis actually increases my appetite.Omeprazole blocks iron absorption and can worsen RLS, BUT if you have gastric issues ordinarily, it could explain why you now have nausea.

You could try adding Omeprazole and see if it stops your nausea, without worsening the RLS. I actually didn't know you had been taking Omeprazole and had stopped it. Omeprazole is used to STOP nausea. It is often a balancing act. You may have to increase the Buprenorphine dose if the RLS worsens on Omeprazole but the nausea stops.

Have you tried a good probiotic like Symprove or VSL for gastric issues?

[davchar23 in reply to Joolsg]

Dear Joolsg,

I have ordered some Omeprazole and also yesterday started taking Symprove. I suppose it will take some time to see if they improve the nausea?

In the meantime I have just had a terrible night and wondered if you would please comment on it?

RLS started to break through late yesterday afternoon and so i took one 200mcg buprenorphine tablet about 5pm which worked.

I then took another 200mcg at 10-30pm and went to bed at 11-30pm but was unable to sleep. Perhaps wrongly I though I needed another 100mcg (total 0.5mg) and tried to take another half a tablet.

The result was awful as my nausea which is normally clear in evening and 12midnight to approx 4am was severe by 1am and sleep almost impossible . Zero RLS of course.

This morning I have not had breakfast and nausea is easing.

My analysis is that I took too much buprenorphine and this caused insomnia and the earlier than usual nausea?

I think my next step is to take the buprenorphine earlier in the day say

1x200mcg @ 6pm and 1x 200mcg @ 9pm

Would you agree my analysis?

Regards

Davchar

[Joolsg in reply to davchar23]

I suspect that if RLS breaks through earlier, that your dose is slightly too low.I think you probably need 0.6mg to cover your RLS 24/7.

So take 0.2mg around 4 hours before bed and 0.4mg at bedtime.

As the nausea is still an issue, you will have to wait to see if Symprove helps as it will take at least a month to take effect.

As you were always on a PPI and then stopped, that could explain the continuing nausea. PPI meds block iron absorption and generally trigger or worsen RLS. But, in your case, if you were taking them for years, they may stop the nausea and allow Buprenorphine to work fully for you.

[davchar23 in reply to Joolsg]

Dear Joolsg,

Thank you for your prompt reply..much appreciated by a man who is confused by his failing ability to stabilise his RLS meds.

By PPI you mean Omeprazole which i took for hiatus hernia?

I agree with you on needing slightly more then 400mcg buprenorphine but I am worried that 400mcg before sleep may perpetuate the insomnia? What you the general view on buprenorphine and insomnia? i have the feeling that if i get to sleep quickly the nausea doesn't break through?

I certainly took Omeprazole for a long time and was taking it when i got nausea from strong co-codamol (prescribed by GP for RLS).

Best regards

Davchar

[Joolsg in reply to davchar23]

Ahh. So omeprazole ( which is a PPI) didn't stop nausea from co codamol??I think you are clearly opioid sensitive.

If co codamol caused nausea and omeprazole didn't stop it, then there's no point restarting omeprazole now.

You seem to suffer extreme nausea with all opioids.

So, back to square one.

My only advice is to start medical cannabis. That is used by chemo patients for nausea when everything else has failed.

Do you have insomnia? Or nausea? Which is causing you to wake up?

If nausea, then try cannabis.

I have not experienced insomnia on opioids, but many people do. Opiods can cause 'alertness' and so sleep is difficult.

[davchar23 in reply to Joolsg]

Yes and although it was a long time ago I seem to remember stopping the co-codamol and the nausea stopped but the road has been a long one soo not 100% sure.

I will as you suggest take 200mcg 4 hours before bed but you don't you think that a 400mcg boost at bedtime is going to cause "alertness" ?

I have an appointment with my GP next week and will discuss medical cannabis. Did you tell me that best source was "Releaf " site?

if I am as you say opioid sensitive then i am going to have to go back to Targinact at a high enough level (30mg /day) to block RLS and bear the side effects which weren't as bad as with buprenorphine.

I am really appreciative of your support without which i would really be struggling and as I live on my own it gets "tough" at 3am each night!

Best regards

Davchar

[Joolsg in reply to davchar23]

I didn't know you also suffered opioid alerting.I can't really advise on that because I have no personal experience of it. You clearly have breakthrough RLS in the early evening, so 0.6mg may be needed to cover that.

However, a higher dose will increase side effects. In your case, nausea and alerting.

I think cannabis from Curaleaf pharmacy would help the nausea and the insomnia/alerting.

When you take the dose will be a bit of trial and error.

[davchar23 in reply to Joolsg]

Dear Joolsg,

I didn't know about "alerting" as such until you mentioned it.

Sometimes I get to sleep quite quickly and then the nausea wakes me up about 4/5am but some nights I cannot get to sleep and the nausea trips in .....is that alerting?

Is Curaleaf the site you used?

The nausea is worst when I am in bed and eases when i get up and then gradually declines almost to zero as the day progresses. This of course relates to buprenorphine intake last thing before sleep?

Best regards

Davchar

[Joolsg in reply to davchar23]

No. Insomnia is completely different to being awakened by nausea.Imsomnia is when you cannot sleep, usually caused by over thinking or your mind racing. Or because opioids produce a hyper alert state.

So, it seems you do NOT have insomnia. The nausea is waking you up.

So if you control the nausea, you will sleep.

I do think it's now worth trying cannabis.

You clearly have a sensitivity to opioids.

[davchar23 in reply to Joolsg]

Thanks for reply

I remember sometime ago someone commented about one medical cannabis site being better than another hence my question to you about Curaleaf?

I have the name of the other as being Releaf but not sure. One was good and the other a bit off hand

Davchar

[davchar23 in reply to Joolsg]

Dear Joolsg,

i have just read, on a separate link, your sad news on possible buprenorphine trials and wished to add my support as you must be so disappointed by the hospital;s turn down. I do not know anything about the various parts to a clinical trial but basically what are the reasons given for not proceeding..money or time. You have been so helpful to me and the forum and i hope you will continue to do so. Through your work I believe I have managed to convince at least one GP to sit up and take notice and we need to continue that fight. I will support you in any way i can?

On a more personal note I need your patient help again. I am now convinced that whilst buprenorphine is the answer as a RLS block but it is causing my awful nausea and it is getting worse! Last night 2x200mcg tablets at approx 7pm and 11pm resulted in zero RLS but terrible severe nausea from about 1am onwards and very broken sleep. i had hot/cold sweats which together with the nausea are still present as i write at approx 9am. it is becoming more and more difficult to lie down as when I do the nausea causes me to gasp for breath to control it. I have to force myself to eat!

I will try cannabis but in the mean time I am thinking about going backwards onto Targinact in an attempt to get some sleep.? I didn't get the breathing problems with Targinact although at 30mg/day (6x 5mg tablets) i did feel "rotten"

I had reduced my pregabalin to almost zero (actually only 12.5mg/day) and I wondered whether an increase of that might help? I think I remembered you saying pregabalin helps with anxiety?

I must admit that I am not sure which way to turn!

Please keep up your efforts to help and support fellow sufferers,Thanks and regards

Davchar

[Jelbea]

Hi davchar23 - I think you are going in the right direction by chosing one method of buprenorphine and sticking with it to see if you can get stabilized. I am the same age as you and I was on 15 mcg strength. I found that the patches (which I was on for almost 2 years) became progressively useless as they only worked for 3 - 4 days and my doctor would not allow me to change the patch under 6 days duration. I also began to find that my skin was upset by the adhesive. One always had to be careful of getting any heat on the patch, i.e. warm shower, sunshine etc.

I changed to sublingual buprenorphine (mine is Tephine 200 mcg sublingual tablets). I take altogether 800 mcg daily. I have two tablets at bedtime, one early morning and one about 6 - 7 pm. At present I am investigating different timings for these. It works very well for me but makes me very tired at times. However, I am also on other medication which does exactly the same so I just have to put up with it.

Your main problem is obviously the nausea and I do hope you can find a way of dealing with this. All good wishes

[davchar23 in reply to Jelbea]

Dear Jelbea, Thanks your reply and useful information about heat on patch effectiveness.

i am als taking tephine 200mg but only 400mcg at moment. Joolsg think my nausea is caused by mini withdrawals ue to use of both patches and tablets. So tonight i am going to stick to 2x200mcg tephine at bedtime for afew nights and see if it blocks RLS and nausea reduces.

I read on this forum that the tablets are effective within 30 -40 minutes and only "tail off " after 6-10 hours

Kind regards

Davchar23

[LotteM in reply to davchar23]

Hi Davchar, I don’t want to add to all the suggestion as it can become too much. Sticking to 2x200mcg / 400mcg seems wise. Will you take it n one go? Or take one half (200mcg) a few hours before bed and the other half at bedtime? I think that is Joolsg’s approach and it may help to lengthen the time the buprenorphine is at an effective dose.

[davchar23 in reply to LotteM]

Dear Lotte, Thanks your reply and yes there area lot of all slightly different thoughts on patch/tablet absorption, half life, application etc surrounding this topic. Whilst each contributor is simply expressing their own experience/opinion there is a need to try workout what is best for each person's scenario.

Last night II in fact took the 2x200mcg together when i removed the 3/4 day old patch. i worked on the basis that i already had quite a lot of bupre in my system. It worked quite well for RSL blocking but nausea still the problem.

I am still considering whether or not to split the dose as Joolsg has proposed some time ago.

I will keep "reporting"!

Kind regards

Davchar