Temgesic - Buprenorphine difference

[smilingjane]

Hello team 😊

I have recently started Temgesic 🥳🥳 and my neuro advised breaking the dose to twice in 24 hours.

I made a straight switch, (with a 12 or so hour break from Oxynorm) and so far everything is very positive. After many years of broken sleep, say around 4/5 hours a night, I can now sleep 6/7 hours straight. Amazing!

The instructions in the box say that the drug lasts 6 - 8 hours. Some people on this site take a dose every 24 hours. I understand there is a half life but am a little confused which is the best way to take Buprenorphine.

I have been prescribed 600 mcgs daily but this isn't quite covering 24 hours a day so I am experimenting with a slightly higher dose.

Do people think that taking for example 1 gm daily at bedtime is a better way to dose than say breaking that to three times a day?

One more thing, knowledgable people. Can you recommend the best product for mild opiod related constipation. I have some sashets of powder but they upset my stomach 😏

Thank you

Jane 😊

[SueJohnson]

Movantal (Naloxegol) is recommended for opioid constipation.

[smilingjane in reply to SueJohnson]

Thank you Sue 😊

[LotteM]

Hi Jane, good to hear about the marked improvement in sleep. I hope it will keep up!

Why did the doctor advise to split your dose over 24h? Why don't you try to only take the Temgesic in the evening? Joolsg does, and so do quite a few others. As the Temgesic works quite fast, take one (0.2mg) to start with say 6pm-ish or 8 pm-ish, depending on how your symptoms are in the afternoon and early evening. You can then add another 0.2mg after 0.5-1h if it is not enough And so forth. This way you can fi d the lowest effective dose, although it will take you a few days to weeks to really find the lowest.

As you may recall I got restlessness or mini-withdrawal in the morning from taking Temgesic in the evening, and after a long while I got changed to a 7d patch of 5mcg/h which works well.

lf there is no good reason to spread out the dose during the day, you may do as described above and take it only/mainly in the evening. I think others will chime in, hopefully with a similar advice.

Enjoy your sleep! If it continues (I think it will) you will geel better soon!

[smilingjane]

Hello Lotte

Good to hear from you.

I don't quite know why Prof W suggested splitting the dose.

I think my rls got a little worse during the transition from Oxy to Bup, (11days now) and thats calmed down from today I think I was having withdrawal from the Oxycodone.

I took 200 mcgs instead of 400 mcgs, which I was needing at lunch time and all seems fine.

I will take a dose at 6pm and then see if that covers me for 24 hours.

I wonder why the leaflet in the Temgesic says to take every 6/8 hours?

Jane 😊

[LotteM in reply to smilingjane]

The leaflet most likely gives dosing for ailments other than RLS. Maybe pain. And I think it is also used to aid stopping to smoke? Anyway, mist ailments continue 24/7, whereas RLS has a clear so-called circadian rhythm. Not many doctors keep that in mind when advising on dosing.

[smilingjane in reply to LotteM]

Ah yes that makes complete sense.

Thank you Lotte 😊

[Jelbea]

Hello Smiling Jane - I also take temgesic sublingual tablets under the care of Professor Walker. Taking a larger dose in the evening does not work for me as it does for others.

Some people metabolise this drug very quickly and it does not last as long as it should. What happened me was that I awoke at approx. 4.00 am and could not get to sleep again. Also my mood was very low as the temgesic wore off and by the time I was getting up I was really miserable which lasted all day. Professor Walker then told me to take 100 mcg first thing, 100 mcg at lunch time, 200 mcg early evening and 300 mcg at bedtime - total 700 mcg. This is working out better for me but I am not getting the outcome that others achieve and still get very broken sleep. I was on the buprenorphine patches before this and they did not last the complete 7 days - in fact they often only worked for about 3 days. I was on the 15 mcg patch.

I had hoped temgesic would be really good for me as I have nothing left to try. The way I take it now is covering RLS well but I hate having to take the dose four times a day because of the possible effect on the teeth.

Professor Walker encouraged me to experiment with the dosing to see what worked best for me. I hope you get this sorted as so many seem to get really good control with dosing only in the evening. Best Wishes

[smilingjane]

Hello Jelbea

Thank you so much for your comprehensive response. I am so sorry you are having problems with Temgesic 😒 How dissapointing when we have such high hopes.

I have benn taking it a couple or so weeks and was very low up until this morning. I feel that I might have been having withdrawal from Oxycodone which did used to lift my mood. I don't really know as I am prone to depression anyway.

I am still experimenting with dosing. Last night I took 400 mcgs at 6pm and needed to take another dose at 11pm. Then 200 mcgs at 7.30am. I haven't needed another dose yet today.

So it does look as if I will be taking two evening doses and one at lunch time daily. I share your concerns re teeth. It's such a shame the patches don't work for you. I wonder, could other meds one takes effect the metabolisation of Buprenorohine?

Have you found that you are less miserable with the morning 100mcg dose? I know jules takes 25ml pregab to help with opiod induced anxiety and suggested I tried that or Trazadone. Thank you jules 😊

I have opted for the Trazadone as it's an anti dep and it's supposed to help with sleep.

Professor Walker is very difficult to get responses from. My gp said she will consider taking over the prescribing of Bup in a couple of months. Atm I have to arrange a monthly script from Queens Square. What a pain.

At the moment though I feel such huge relief. I first read a post by Shumba more than two years ago. That is how long it has taken me to get this far. It's beyond belief. Two years of Oxycodone, omg .... it worked, but the side effects ... I am very relieved I now have Buprenorohine.

I wish you all the best going forward

Jane 😊

[Typicallygaslit in reply to smilingjane]

Are you seeing Dr Walker through the NHS? I’ve been trying to get help for three years, and I can’t even get oxycodon from the current GP. She gets incredibly anxious, it’s a complete travesty. Everything health related is a complete travesty here in Wales. I also think Bupronerphine could be the most helpful to me. So I’ve been looking into video consultations but there’s only Dr Chaudhuri who does them and it’s incredibly expensive. I don’t know whether it’ll even work or how it’s supposed to work in terms of getting prescriptions for opioids. I have severe hyperacusis pain so I don’t make phone calls generally. Just wondering if you have any advice/experiences to share?

In terms of dosing, I might end up having to take one in the evening and one in the early morning as I always wake up and need some more sleep. But it’s just a guess based on my current regime.

[smilingjane in reply to Typicallygaslit]

Hi Typicallygaslit

I asked my GP to refer me privately to prof Walker. We had a Zoom call, it was quite quick within 6 weeks.

Then, after I explained my parasomnia issues he said it would be a good idea to have a sleep study. I explained that when I saw a sleep specialist at my local hospital I didn't find them very helpfull. (I am being polite!) He said he could see me at Queens Sq and said he wd see me on the NHS!! I was suprised, I didn't expect to hear that.

I had to jump through hoops to get Bup. His clinic letter sent to my gp after our consult 'suggested' to my gp that I tried 4 other drugs and if they didn't work then he suggested I could try Bup. Basically as a last chance drug.

So after trying every rls drug, I have been allowed Buprenorohine. In fairness I did trial them all and they all had side effects so it took me about 8 months to get there.

Then ... my GP said that she wasn't prepared to prescribe it to me ... groan .. She is scared of her licence because it would mean prescribing off licence. I think also because she has zilch experience of prescribing Bup for RLS .... groan again ....

So in the end PW is prescribing me a monthly script from Queens Square pharmacy. Which costs around £28 pm. (inc courier). I have to call to request monthly.

This week I asked my GP if she wd reconsider prescribing in a couple of months when she sees how I am progressing. I will gather some info re trials/evidenced sucess stories/papers etc.

[Typicallygaslit in reply to smilingjane]

Ah ok, that’s really helpful information (I only saw this after your next comment sorry). Sooo… your GP sounds exactly like mine. I chose a woman, the only one there is, but she’s just so anxious and paranoid it’s REALLY stressing me out. I’ve spoken to her for HOURS in clinic this years! And written long reports about my issues, and printed out all the Mayo and NICE guidelines… she then transferred the responsiblity to a male doctor (hmph!!!) who didn’t know s*t about either my case or RLS. He just said to take more iron, well it’s coming out of my ears now. :(. So no, I can’t do that.

In the end I decided to write the female GP a letter to explain everything one more time but hopefully it won’t backfire. I have this constant worry that things will backfire, as I’m sure you do too. I’ve had so many awful letters coming in from other consultants, namely from the so-called sleep clinic, as well as a so-called ADHD clinic which was a complete farce and almost funny if it wasn’t doing so much harm and potentially preventing me from accessing care. The letters are complete nonsensical garble but the GPs don’t have time to read anything mindfully.

Hm so I wasn’t sure whether I’d need a referral from the GP to one of the specialists? I don’t know if that’s even possible because I’m in Wales, not in England. I thought I could just make an appointment privately. Not that I want to speak on Zoom for a number of reasons but I can’t travel that far. I’m due to see a neurologist soon (at last!!) but I need the sleep before that. The sleep has gone downhills dramatically and like I said in the other comment, I’m only surviving thanks to some old pain killers. I can’t exist on poor sleep, I have underlying health problems.

Very good to hear the cost of the medication coz that was scaring me also. Not too bad all things considered.

Did you find that Walker was a good listener? Did he make you feel heard?

[smilingjane in reply to Typicallygaslit]

Generally, often you can refer yourself to a private consultant. However It is really good practice to ask a gp to refer you. Keeps them in the loop, profers respect etc.

Then, after the consultation ... usually the consultant will send his clinic letter to your GP, copying you in and hopefully advising your doctor of the best way forward - either medication, (if they think appropriate) or any other kind of treatment.

Your GP then, (depending on the practice or postcode too maybe, MAY be obliged or/and decide to follow the prescribing advice.

Things become a little murkier esp' with opiods because at the end of the day individual GPs can decide whether or not they will prescibe.

So, as in my case my GP refused to prescibe and I went back to PW and said what do I do now? And of course, he can prescribed. However, he is tricky to get hold of. His secretary must be super busy 🙄

I don't see why you wouldn't be able to get an appointment with him privately. Not sure how it would run with the NHS though. Are your other illnesses neuro related?

Jane 😊

[smilingjane in reply to smilingjane]

I wd say PW is a good listener. But, be sure to have your questions clearly in front of you in a list.

😊

[Typicallygaslit in reply to smilingjane]

Phew, hm, it’s all pretty hard to figure out isn’t it, so thank you for giving me some idea! I was beginning to think the process is something along those lines. I wrote this letter to the female GP outlining my plan and also said that I would try and pay for private help if she wasn’t willing to help. I have tried not to sound as angry or impatient as I really am. I’ve had so much rubbish from doctors in Wales including how they misdiagnosed my husband so he died. I’m really this close to handing in a complaint. I’m just worried it might make things worse, just because it’s a small and intimate place here and I depend on the surgery. Can’t start travelling elsewhere at this point in time.

I have prepared a medical history with various ideas and theories about my ailments but I’m aware that some consultants might find it overwhelming and off putting and so am not sure if this is something I should send them beforehand, or not.

I have an appointment with a neurologist on the NHS in November but I just can’t hold on until then and need the help yesterday. This seems really hard for people (doctors) to grasp. They think oh well if you sleep a couple of hours per night you’ll be fine, or worse, you just think you’re not sleeping. It’s nothing like that and the situation is really serious and I’m only just coping thanks to the old meds I have. I realise I might not get a video call that quickly either but at least I’d set something in motion. I’ll probably wait until after the visit to the neurologist but I’d like to try and have a strategy or something to say if the GP continues to resist the science that I’ve been trying to present to her. I think they are really all anti-science and don’t really like dealing with illness at all. Makes you wonder what made them choose such a career… but anyways , the reason I don’t typically use the telephone is extreme sound intolerance and the need to wear ear protection. So video is slightly better than a phone call as there are more clues. I had my ears buggered a few years back, it’s also a very distressing condition.

[smilingjane in reply to Typicallygaslit]

I am so sorry to hear about your husband 😔

Are you seeing a neuro for RLS or other complain/s?

Extreme sound intollorance will make Zoom slightly easier than calls, you can turn sound down and explain you will need a longer appointment with poss simple sign language. If you explsined to P W he would take that into consideration.

You clearly need an emergency appointment with a doctor that can prescribe wgat you need for your RLS.

After all, your doctors presumably are unaware that you are using painkillers you have for past treatment to manage now. Are you prescribed any opiods for pain currently? (Sorry if I have missed something and you have already made that clear).

If you can afford it it may be a good plan to contact Professor Walker's secretary asking for an urgent appointment with PM. I will PM you with her email plus other stuff.

Jane 😊

[Typicallygaslit in reply to smilingjane]

Thank you Jane! That’s really kind of you. Yes I’m seeing the neurologist primarily for the RLS but I will also try and make a point about my general issues with serotonin and hope that he’s able to see the complexity behind my troubles. This is where maybe my report would be helpful.

Well, I did mention to the GP that the Tramadol I had had proved to help the RLS, and I also admitted that I had had to use some co-codamol from a surgery back in the days, but she rolled her eyes and got very nervous, so I’m not intending to share any more info about anything whatsoever. I’m supposed to see her on the 10th and I can hold out so I’m just not quite sure what to do to be honest. Given the amount of time we’ve spent on this, it’s unlikely she’ll change her mind. On the other hand, I have explained my plan very clearly. Which is that I will substitute some of my current sleep medication with the low dose opiate (any will do at this stage except not co-codamol because even paracetamol exacerbates RLS). I’m not taking any more sleep meds out until I’ve seen her. But the issue here is that she just doesn’t trust me to be responsible and it’s a pretty nasty feeling since I used to be trusted just fine in the past. This is why it just might be better to go back to the previous GP who knows me much better (has been to my house even), it’s just that he’s also pretty wooden and disengaged. It’s so awful to be in your fifties and feel that you have to obey to some random guardianship like this.

For the video consultations I use noise cancelling head phones which helps a bit with the tinniness of the sound. I don’t know any sign language as this is a new injury. I find people don’t care one bit that I have this issue e.g. they just call when I’m unprepared etc. But it’s all I can do when obviously I need some kind of help.

[smilingjane in reply to Typicallygaslit]

Isn't it horrible when you have an invisable illness and people don't seem to 'get it'. I think often people do care, its just that they don't understand and need things clearly explained It's not easy is it, especially when you are unwell and sleep deprived 🙄

You could go back to your previous gp but you most certainly don't have to do what he says.

You can suggest tentitively what you thinks the best way forward baby steps ....

😉

[Typicallygaslit in reply to smilingjane]

Yes I thought a female GP would be better as the previous male one was incapable of dealing with female issues, but I’ve also seen the downside which is the anxiety that comes with empathy. So yes she has some warmth but we’re just not getting anywhere on a practical level as she’s too concerned for her own safety. I’m trying not to make her feel manipulated either. It’s becoming such a minefield of trust issues and a lot of faffing that I don’t want in my life either. Don’t you think Covid has made things harder, not easier? Doctors probably hate us chronic people even more now. I actually flashed my spinal deformity just to make a point because it’s all getting so ridiculous. She looked pretty terrified but at least she could see that I do have a ‘detectable illness’. At the very least. But the sleep clinic really messed things up with a false report and some really rubbish advice. 🙄😣

[smilingjane in reply to Typicallygaslit]

It is so difficult to get a balance.

What a shame the sleep clinic showed such incompetance. You need to see a good neuro with yr brief history sent accross before your appointment. Hopefully they will have time to read it.

And another sheet with bulletpoints to pass over on the day in case you forget anything.

Is there anyone you can take with you to take notes? I find having a second person often adds strength to the appointment. It shouldn't be like that but I have found that often to be the case.

You really need to clearly explain how your rls is affecting your quality of life. Sleep is so important.

All the very best for a positive result

Jane 😊

[Typicallygaslit in reply to smilingjane]

Thanks, it’s helpful to be reminded to try and stick to the essentials as I have so many issues and theories that could confuse doctors (as they don’t really seem that bright most of the time anyway). Unfortunately I have no family and no friends of the kind that would care to accompany me to an appointment. The neurologist is very far way also which makes it all even harder. I literally live in the middle of nowhere and the services around here are abysmal.

[smilingjane in reply to Typicallygaslit]

Whare and who is your nuerologist? if you don't mind me asking? Maybe PM me?

This is just an idea and I don't know if you have the energy to follow it through, but hospitals have an organisation called PALS have you heard if them? They may be able to put you in touch with a volunteer or organisation with a volunteer that could possibly accompany you on the day of your apoointment.

[Typicallygaslit in reply to smilingjane]

Oh I thought PALS was just for complaints (and that’s all been very negative for me unfortunately). I’m not sure there is any help and support here in Wales, it’s all very dire, the Middle Ages really. The neurologist is a Dr S Ubben, it’s going to be in Telford (Shawbirch).

[smilingjane in reply to Typicallygaslit]

I think PALS is for info too.

Thing is that because it's run by volunteers they are not always clued up.

I too have had a negative experience with them.

It would take energy which you may not have but you could always research NHS volunteers, ask at the CAB. Or the NHS.

A friend of mine volunteers and takes people to and from hospital by car. It is a service that can work well for people that live a way away from their appointments. And you could always ask if theres a service where a volunteer could accompany you to your appointment to take notes for you.

I hope it goes well for you

😊

[Typicallygaslit in reply to smilingjane]

Thanks, Jane. Yes, energy is a problem. I’m so overwhelmed with all the absurd rubbish I have to put up with that I struggle to make these types of plans. I think I need to get the patients transport service for this appointment as it’s really too far for me to drive and I don’t know if I am sleep deprived or not. They are usually volunteers who have driven me but never accompanied me into the hospital clinics. I have to communicate with people via email which makes it even harder to access help. I might try something like Age to see if they have any suggestions. Thanks again xx.

[smilingjane in reply to Typicallygaslit]

All the very best for your appointment.

Please do PM me if you have any questions before you go. Let me know how you get on 🤗

[Typicallygaslit in reply to smilingjane]

Thank you! Hugs 💞

[Typicallygaslit in reply to smilingjane]

Just an update: the female GP cancelled my appointment and I was referred to the male GP who I used to see instead. She didn’t like the letter I wrote her, in other words, and has basically chickened out. I will see the other GP next week, I have no idea what he’s likely to say now that they are all on a witch hunt. This is so ridiculous and chronically sick people are growing in numbers each day so they can’t keep trying to hold us off. We’ll be like a flood. 😳

[smilingjane in reply to Typicallygaslit]

Oh dear .. How disheartenning 😕

Is the doctor you are being referred to the one that you quite respected in some ways? Do you have enough pain killers to last until the appointment.

Last question, are you still considering an appointment with Professor Walker

🤔

[Typicallygaslit in reply to smilingjane]

I was contacted and told the female doctor is unavailable so here is an appointment with Dr X who was my rather uncommitted GP for many years. I’d mentioned him as someone who could perhaps help her understand my case so this is why the appointment was transferred to him all of a sudden. But - I had been thinking, as you may remember, that perhaps it’s better to just go back to him and forget the faffing lady who accomplished nothing at all. He’s very unemotional and it has struck me as cold, for instance when my mum was dying he explained nothing whatsoever. But on the other hand, he knows me as a reasonably long standing member of the local community and is probably less cold than he seems, so let’s keep fingers crossed that I can explain things quickly and efficiently without unnecessary discussions to and fro. He always seemed to just trust me to deal with my own issues in my own way, and that’s really what I need. The conditions I have are so erratic and quite extreme in some ways, it’s crazy for some total stranger and ignoramus to try and micro manage it from afar. I hope this GP will see some sense and help me cope a little better until I get to see the neurologist (who will hopefully not just be one of the team members). I’ll really just have to see what the GP thinks. I can just about manage for the time being but I’m sleeping through the day rather than night.

[smilingjane in reply to Typicallygaslit]

🤞🏼 for you Typicallygaslit.

You never know this doctor may even prescribe buprenorphine.

Is it mentioned in your letter? Are you taking along any supporting evidence regarding how efficiantly it works for many people?

I know how difficult it is to gather information together. Especially when energy is so low and sleep is so poor.

I wish you all the best for your appointment with the GP and with Dr Ubban. Did you decide against Prof Walker?

😊

[Typicallygaslit in reply to smilingjane]

Thanks Jane. I did send her a lot of print outs and yes I tried to push for Buprophenine but she was really adverse to all medications. She just rolled her eyes every time I mentioned anything that people use for sleep or RLS. I think I might turn in a complaint about her as she was simply not doing her job. I literally spent hours explaining things for her but nothing seems to have made sense to her. Then when I saw her colleague, he had prepared his speech so there was no room for discussion. He claimed to have discussed it with other colleagues, perhaps partly to shut me up. Opioids were ‘absolutely out of the question’. I sure hope my familiar GP will see some sense but I guess I have to print everything out yet again. The one thing I haven’t found is some clear statement about Bup that would support my case but I’ll have a look today. I could only find that one video from Johns Hopkins. No I haven’t decided against Walker yet, I just need to see what I get next week from the GP. 😘

[smilingjane in reply to Typicallygaslit]

If you pop a post on HU asking where obtain information to support your case re the effectiveness of Bup.

One of the more knowledable folk will respond. I think that is a key document you need to take to the GP with you.

Your doctors sound very old school. It does takewhile for GPs to understand opiods and their uses.

Especially as it's continually stressed in the media etc that we are in the middle of an opiod crisis.

All the best for next week.

Stay cool and measured in the consulting room. It will get you further. Remember that doctors know a little about a lot and they are not taught RL at medical school.

I've had a couple of situations where GPs don't like being informed of stuff that they don't know. So I sort of suggest rather than inform them.

Hope I'm not sounding preachy 😉

[Typicallygaslit in reply to smilingjane]

No not at all Jane, it’s fine. From what I hear from others, most UK GP’s are very old school unfortunately. But I think at least I know this person a bit and think he’ll understand where I’m coming from even if he’s quite detached. I will also bring up the fact that my osteoarthritis is really bad at this stage and likely connected to the RLS, and then hopefully he can see the bigger picture which perhaps the lady was resisting. I can only be who I and it’s someone who has trouble getting anything out at all. They don’t get that unfortunately but I can’t help it. Thanks Jane ☺️

[smilingjane in reply to Typicallygaslit]

Good idea to emphasise your osteoarthritis. And to recognise a possible connection witj RLS and the resulting lack of sleep.

Lets hope he recognises the bigger picture. Sleep is so important to heal and to help pre existing health conditions.

Let me know how you get on. I'm not particularly religious but I do believe in the power of prayer.

Will be thinking of you this week. Take care and look after you.

Jane 🥰

[Typicallygaslit in reply to smilingjane]

Thanks, I guess I should have added that the opioids isn’t the main issue here, the main issue is that I already have sleeping pills and I don’t know at this stage how things would look if I had a medication that controlled the RLS. The disorderly sleep test and the misinterpretation that went with it made things much more difficult because the consultant just said I can’t have any other medication because of what I’m on right now, and GP’s listen to consultants, not their patients. I’ve tried to explain that I need to work it out and am obivously careful, and that this is a more rational approach than me just trying to cut through the RLS with sedatives, but they don’t want to take ‘responsibility’ for anything happening. I know nothing will happen but they are being paranoid. At the same time, they now believe I should take huge amounts of iron because the consultant recommended it as a supplement, and I think it’s actually been making the RLS worse. That’s because I have complex neurological issues… but whether or not anyone has the brains to understand that there’s a cluster of problems and how to deal with it, is another matter. I’m a bit wary or worried about talking to Walker as my issues aren’t simple, and so I’m trying to postpone that bit until I’ve sorted more things out. I just want to do what I need to do but they won’t let me. Sigh.

[smilingjane in reply to Typicallygaslit]

I see, I think. Do you find the sleeping pills cut through your RLS?

😊

[Typicallygaslit in reply to smilingjane]

Not anymore, no. I’ve had a range of benzos and a small dose quetiapine, and the latter makes the RLS worse but it also calms some agitated neurotransmitters down so it also helps… It’s a mess. So as I’m older now, I really need to get the restlessness under control first.

[smilingjane in reply to Typicallygaslit]

You do Typically Gaslit 🤔

Good luck with everything xx

[smilingjane in reply to Typicallygaslit]

You could have a tele call instead of Zoom, or have Zoom and the camera switched off?

😊

[SueJohnson in reply to smilingjane]

Print out the appropriate section from the Mayo Clinic Updated Algorithm on RLS.

[smilingjane in reply to Typicallygaslit]

Did you lok and see if PW would do a Zoom consult? He's very good. I was rec him by joolsg on HU. She is very informed.

PW did have Rotigintine on the list of 4 to try before being 'allowed' Bup. It did work very well .. but it gave my brain weird crunching sensations.

Anyway as you will probs kbow it is a DA which it is best not to touch long term.

PW costs £250 ph as do most others. But I think once you are allowed your script maybe your gp may prescribe or ... it wd just be the monthly private scripts ;(

Or changing GP. I realise prescribing opiods is down to eack individual doctor though 🙄

Re dosing, I am still tweaking after 2 weeks. I am finding I can manage, (first time last night) ... on 200 mcgs at 8pm same at 10pm and then 100 mcg, (tab cut in half) at 6pm. It makes me v. tired through the day. Hence cutting this morning tab in half.

Even if thats a price to pay, its better than the cruel disease that RLS are.

I hope by next week to have fully tweaked the min I can get by with. I am so very pleased with Buorenorphine. So much better than Oxy. You don't feel at all 'drugged' with it and my cognitive ability is much better. I can read again!

What are you taking for RLS and for pain at the moment?

Jane 😊

[Typicallygaslit in reply to smilingjane]

ooh, I’m so glad to hear you find Bup doesn’t give you the hungover feeling! I have only so far tried some random stuff I had at home for pain and so I know they work on the RLS but I can also tell they are all different from one another, and really have high hopes for Bup. My research suggests it would indeed be the best option for me (doesn’t overwhelm and sensitise the MU opioid receptors like some of the others, for example, and doesn’t increase serotonin like Tramadol does). I’ve been surviving the last couple of months on the out of date pain killers I’ve had in my cupboard. Before that in the spring/summer I managed to get some Tramadol for my ear pain and started to use 1/3 at night for the RLS. I did find it made me feel depressed the following day but I think that’s because of the serotonin enhancing properties that I’m super sensitive to.

I have tried some dopamine agonists but my case is complex and I don’t tolerate anything like that at all. I’m really surprised to hear Walker may offer video as I couldn’t find any such information online. I only found Chaudhuri and two prices which suggested it could creep up to a thousand pounds quite easily! One site cited 400 initial and 200 follow up, another 900. So thank you for that because I should probably look into it.

The GP situation is difficult as it’s a small surgery in the middle of nowhere basically and the lady GP I’ve tried to educate is very nervous and tried to get back up from the others to deny me more opioids. I might try and go back to my old GP as he was quite easy going but I’m upset he never even suggested RLS throughout the years, and don’t know where he stands with any of it. It’s so stressful :(. But I’m trying to do good ground work here so that I can hopefully get the local GPs on board and trust that I get some kind of treatment in my old age. At least they have finally agreed that iron can help because a sleep clinic has suggested it. The sleep clinic’s other advise was dreadful as they didn’t feel the restlessness is worth treating with medication. They basically said I can’t have any because I’m already on sedatives, well hello, the point is to transition to more appropriate medications and control the restlessness! They just don’t get it, and they don’t care. ;(

[smilingjane in reply to Typicallygaslit]

Re Bup', not a hungover feeling, just extremely tired hence me tweaking 🤔

I am so sorry you had such abysmal help from your sleep clinic How dissapointing and upsetting for you.

Yes. I think I remember seeing Chaudhury as v. expensive. I would def try to get an appointment with PW. If your case is complex re meds and you tell him what you can't take and what you have experimented with that works ... or not.

Then hopefully he will give your gp more confidence in prescribing.

It's such an absolute pain that we have to educate medics re what works and there is such a lack of knowledge around.

Have you been following this site for a while?

All the very best going forward and don't hesitate to PM me if you want any names of the really knowledgable people on this site. They have helped me so much . You know who you are 🤗🤗🤗

Jane x

[Typicallygaslit in reply to smilingjane]

That’s excellent Jane. I guess we all have slightly different responses to these medications. I find overall I tolerate the opioids well enough to consider using them, and that’s really good news in my world since most drugs make me very sick. I’m not happy about it but sometimes you have admit defeat.

I haven’t been around here (on this site) for long but I’ve seen some useful information that I’m grateful for. The main thing really is getting the right medical help. I have somewhat untypical responses to drugs and supplements so most of the things other people have tried, don’t work for me. This is where I really hope a neurologist could be supportive. There must be a specific neurological dysfunction somewhere that’s causing the inability to tolerate both serotonin and dopamine enhancing medications and supplements.

I did find out that I have the genetic variant for RLS and poor sleep, that was something at least!

This has been an awful awful year in terms of the resistance and negativity from health care practitioners that I’ve been at the receiving end of, but I’m sure at some stage the only way is up. 😘

[smilingjane in reply to Typicallygaslit]

Sounds like you have had a tricky time.

You are on the right site for excellent knowledge and experience.

Keep asking the questions and don't be shy.

We all know what a cruel disease this can be. There are medications and treatments out there. Its just finding the right ones and the right medics to prescribe and advise.

I am sure you will get there.

😊

[Typicallygaslit]

For constipation and any other motility issue, I find chia seeds much better and kinder than anything else. I wouldn’t tolerate artificial laxatives.

[smilingjane in reply to Typicallygaslit]

Thanks so much gaslit

Out of interest do you soak them or grind them with a p and m ... or just have them as seeds? And what quantity? I soaked them in oat milk once and they set like a pudding 😊

[Typicallygaslit in reply to smilingjane]

Yep just like you :). I prepare a pudding in the evening just as they are with dried coconut and maybe frozen raspberries and some cut up apricots and a dash of salt (in water). It doesn’t taste so great tbh but I don’t have the energy for gourmet food. the quantity is ‘whatever’ :D. In the past I’ve made nicer chia puddings for dessert. This mixture does keep a few days which also saves me hassle. I have IBS and find this very soothing - I don’t tolerate psyllium and many other things.