So , I have been withdrawing off Ropinirole for months and getting closer to the finishing line . At the mo im taking Tramadol , Dipyridamole , Gabapentin and Clonazepan to help .When Ive taken my last Ropinirole then what do I take?Do I need a complete break off everything for a while or not?
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I would think it would depend on your symptoms.
You don't need a break off everything for awhile. In fact you would have withdrawal symptoms from at least the tramadol, the clonazepam, and the gabapentin. Instead you just need to let everything settle for several weeks or more. You might then find you don't need to change anything. How much gabapentin are you currently taking?
Generally between 1,800 and 2,400 mgs daily .Thanks Sue ...again !
That should be enough to control your symptoms once you are off ropinirole for awhile.
Life is still pretty dire with no sleep again last night. Im down to 0.5 ropin now. I dont tend to take drugs in the day but start about 5 , could this be where im going wrong ? Ive got gabapentin,dipyridamole , tramadol and codeine ( cant take both I know ) ropinirole and clonazepan plus iron b12 magnesium etc etc Bedtime is about 22 if I ever get there ! Could you do me a rough drug chart to follow . Im worried that Im turning into a zombie . Thanks Sue
Ive been trying to get Buprenorphine but apparently only patches are licenced in the Uk and she (pharmacist at gp ) says they wouldnt be suitable as it gives 24 hr cover . What do you think ?
I don't know why the pharmacist said that. Both the patch and the tablets last 24 hours. And there are lots of people on this forum from the UK taking the tablets. But the patch should be fine because you want 24 hour coverage because other opioids which don't give 24 hour coverage can result in mini withdrawals so you have to take them every 3 to 6 hours (depending on the opioid) to avoid that.
I don't believe there is any problem with taking all of the things you are taking at the same time except the magnesium shouldn't be taken within 3 hours of gabapentin and iron shouldn't be taken within 2 hours of magnesium and should be taken at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea. And of course this is all complicated by the fact that you are taking so much gabapentin which needs to be taken in divided doses of 600 mg 2 hours apart - it would be easier if you could switch to pregabalin which can be taken all at the same time. Divide the gabapentin dose by 6 to get the pregablin dose and you can switch directly.
I dont start Gabapentin until 16 .00 then i take 300 mgs and then at 18.00 and 20.00 i take 600 mgs and i seem to have boxes of it ! Im not sure the Dipyridimole or Clonazepam is helping at all but who knows ?Ive suggested the other sleeping tablet and am going to try again for the Buprenorphine. If they understood rls more they would give you anything ! Wish me luck !
I definitely wish you luck and will keep my fingers crossed for you !
Thanks Sue ,I feel so scared at the thought of taking my very last ropinirole or will it be bearable ?!
You can do it. And know that every day after that firstd ay it ill gradually get better.
Everything crossed . Thank you , have a good day
Hi sue yes i can do and i will ! Had a very bad day with so many suicidal thoughts and tears most of the day . No sleep until 9am then had an hour . No luck with Buprenorphine , its a very definate NO. Could I buy online or too dodgy? Did get short course of Zolpidem though .As a matter of interest I see you take Gabapentin. What dose did you start on and what did you work up to and what times . Thank you again , I dont know what I would have done without you
There is no way to buy buprenorphine online. Since your doctor won't prescribe it can you afford to go private? If so I can give you a recommendation of who to see. If not can you get a referral to a neurologist who might prescribe it or recommend it to your doctor to prescribe it?
I started out with 300 mg and after 3 weeks was raised 100 mg every couple of days. I take 1500 mg. 600 mg 1 hour before bed, 600 mg 3 hours before bed and 300 mg 5 hours before bed.
Yes please could you recommend someone in the uk .Would i have to go and see him ? Any idea of cost ?
Have also asked my neurologist but hes very slow !
Since your neurologist will prescribe the buprenorphine, I assume you don't need a recommendation.
He said he could but he didnt think it was ideal for me ,of course they wont explain why . I chatted to my GP via phone of course and explained that withdrawal was evil and lots of suicidal thoughts . He basically said up the Gabapentin . I was prescribed up to 1200 mgs x 3 times a day for sciatica but that seems to do abs nothing and it is quite a large dose isnt it ? .He wouldnt prescribe buprenorphine either . In your opinion is it good and did you use it ?It scares me that my dopamine receptors are ruined for life and that I wont sleep again . I would have to pay but I dont care. I just want some quality of life.I think I will email him now . Thanks Sue.Will keep you posted .
Yes 3600 mg is the maximum. I would insist your neurologist prescribe the buprenorphine. No I haven't used it.
As Im on max dose of Gabapentin , going to suggest maybe switching to Pregabalin , 300mgs daily . How often would I take that ? I commence Gabapentin now around 4pm .Thanks Angela
The equivalent dose of pregabalin would be 600 mg. I wouldn't lower it to 300 mg or you will probably have withdrawal effects. If you want to go that low I would start out with 575 mg of pregabalin and then each week lower it by 25 mg. and even that might be too fast. If you start having increased symptoms like insomnia, headache, nausea, anxiety, diarrhea, flu-like symptoms, pain, excessive sweating, dizziness, confusion, and palpitations you are probably reducing too fast.
Taken the pregabalin in one dose 1 to 2 hours before bedtime.
Ah my mistake I thought the equivalent dose in Pregabalin was 300mgs . Im chatting to pharmacist at gp soon so was going to suggest switching so im not constantly swallowing pills . I will go for 600mg and if she wont agree , I will stay on Gabapentin ! Thanks Sue .
So ive been off the Ropinirole for nearly a week now, First couple of nights seemed quite promising and got some sleep. Taking max dose of Gabapentin and Clonazepan . Last 3 nights Ive been woken by horrendous legs about an hr after falling asleep and have to get up .Im abs gutted as I thought life would slowly improve .Maybe Im expecting too much too soon .Last night I was up all night with crazy legs, and tonight looks the same . Hellllllpppppppp !
Im really at my wits end . Week off Ropin and although days and early evenings are better,nights are pure hell and I cant take anymore. Ive cried most of today and talked about ending it all . Still havent got neurologist to reply about buprenorphine despite 4 emails . What can i do , what will help these stupid legs ?
My neurologist will prescribe it but doesnt think its the answer . He suggested upping the Ropinirole dose ...def not doing that ! Ive been taking at least 900mgs of Gabapentin anyway for sciatica so may be not up that dose yet ? I took Zolpidem last night but never again , so confused and disorientated it was horrible .Apparently I did sleep from about 4 til 10am but I cant remember anything about last night at all . I woke up looking for my mum who died 50 yrs ago ! Not a nice experience . Back to the Clonazapan I think
Unfortunately zolpidem can cause some unusual side effects although it is rare and I am so sorry you got them. So your neurologist will prescribe the buprenorphine - that is great. I would try that.
So Im now on 450 Pregabalin. , can go up to 600 tonight if i want . Daytime and evenings are great . Get into bed about 10 legs all calm , straight to sleep then wham they kick off within the hour so I get up and come downstairs , walk , knit anything to distract then back to bed then same happens again about 4 -5 . Shud this improve the longer Im on Pregabalin. Ive still got Clonazepam , dipyridamole and codeine i can add , but dont want to overload too much .Anyway its going well . Thank you
This should improve the longer you are off ropinirole, not the longer you are on pregabalin. Unfortunately for some it can take a month or more. I would keep emailing or calling your neurologist for the prescription for buprenorphine. And take the clonazepam to hopefully help you sleep.
How long were you on ropinirole?
10 yrs but other agonists b4 that . Ive hassled neurologist 5 times now but ignored which is helpful !
Unfortunately since you were on DAs so long, you may very well have your dopamine receptors damaged so pregabalin won't work. Can you see another neurologist or pay to go private? If so create a new post asking others on this forum what doctors will prescribe buprenorphine near where you live.
Nights still no better . Ive found a neurologist near to me re Buprenorphine but he has yet to respond . The other neurologist will prescribe but doesnt think its the answer , when i ask why I get no answer. Sooo frustrating. I just want some sleep .Pharmacist at Gp happy to discuss Targinact next week but pretty sure it makes me itch terribly . What are your thoughts on Methadone if anyone will prescribe ? ( just short term) Regards A
It's fine but doesn't last the full 24 hours so you might need to take it more often to avoid mini withdrawals. That's why buprenorphine is so good.
Im really really struggling sue . I cant find anyone even privately to prescribe buprenorphine patches. Any ideas. Cant really go to london
Did you try to contact your first neurologist through his secretary - the one who never answer your emails?
Yes Ive left messages on her answerphone and nothing back . Offered to pay for a phone consultation as well !
Are you willing to drive to Cardiff in South Wales? It is not as far as London. Dr Jose Thomas at the Gwent sleep clinic has been recommended by Joolsg.. He does private work out of Spire Hospital in Cardiff South Wales and will do phone consultations so possibly you won't even need to drive there. He will prescribe opioids.
Yes I have been in contact with him will need a gp referral and its £200 to see him . I didnt realise he would do a phone consultation , I will email him now . Thanks Sue ....again !
We are going to see him next week. He has not asked for GP referral, just a short synopsis of what is happening and drug history. Hopefully he will be able to help my husband.
Ive just realised he replied and said prescribing opiates in the private sector isnt easy . He suggested getting my Gp to prescribe Targinact. Ive got a pharmacy review on Monday to discuss Targinact so fingers crossed. I think Ive had it before and it made me itch but prob worth a try again .Thanks
It's oxycodone + naloxone. It's supposed to last for 12 hours but those on the forum say it doesn't last that long and Joolsg and Madlegs 1 suggest taking it every 6 hours. I'm surprised he said that since oxycodone is an opioid. If you develop itching try taking claritin or allegra or zyrtec which are non-sedating antihistamines.
Ah thanks for that
On your 1st neurologist if you still prefer buprenorphine, I would keep calling the secretary until you actually get her and not her voice mail and ask for a phone appointment with the doctor.
Hes already told me he doesnt think thats the answer for me but when i asked why , of course no reply !
Yes but didn't he say he would prescribe in spite of that?
My husband has just contacted him . This morning at 5am having been up all night , I had become quite physcotic and had lost the plot completely . I cant remember much and dont want to talk about it either. Since changing from Gaba to Pregab this week I think my mood is very low , is this possible or unlikely its that ? I have pharmacy call monday to try targinact so thats keeping me going
It's possible. Why don't you change back to gabapentin to see.
So it just gets worse. Dr wont give any opiods in case i die in my sleep . Got hold of dr fackrells sec in Bath , he can do a phone cons end of Nov for £270 which is appalling i think . Ive emailed Jose again in Cardiff , his was face to face for £200 but again long wait . Im sick of thr whole lot . Shes put me back onto gabapentin from pregabalin as mood was low and talked about weaning me off it !! I tried to explain its replacing Ropinirole but I lost the will to live in the end
So it just gets worse. Dr wont give any opiods in case i die in my sleep . Got hold of dr fackrells sec in Bath , he can do a phone cons end of Nov for £270 which is appalling i think . Ive emailed Jose again in Cardiff , his was face to face for £200 but again long wait . Im sick of thr whole lot . Shes put me back onto gabapentin from pregabalin as mood was low and talked about weaning me off it !! I tried to explain its replacing Ropinirole but I lost the will to live in the end
Its goes from bad to worse really . Dr wont put me on any opioids in case I die in the night ! Rang Neurologist again in Bath and he will do a phone call end of Nov for £270 which is appalling . I ve emailed the guy in Cardiff and lets see what he says. Im just so tired and fed up .I know hes not free until end Nov either .
Apparently he cant prescribe anything to me as Im England and he is Wales. All about budgets and money !
Hi Sue , its 6 weeks now off the ghastly ropin and days and evenings are hugely improved . Nights can still be bad , 2 hrs last night. Im taking 1500mgs of Gabapentin from 16 .00 hrs , Dipyridamole 2 hrs before bed . Clonazepan 500 or 1000 mcgs b4 bed and 60 mgs of codeine usually just at bedtime. Ive finally got a private Neurology appt end of Nov. Interestingly I spoke to a new young gp at our practice and he knew all about iron levels so well impressed ! Am I doing all I can for now or shud I up the Gaba ? Hope you are well ? A
I'm glad things have improved. You can try increasing the gabapentin by 100 mg every 2 days up to 1800 mg.
Unfortunately Ive only got 300 mgs capsules
Well I guess you could try that.
So i finally got to see a neorologist last week at great expense . I didnt feel he knew a great deal about rls ! He would only put me on Targinact 5mgs /Naloxone 2.5 mgs 1 tablet 12 hours apart. He has put a patient on methadone in past but trying this first.Wouldnt consider buprenorphine as not enough study on it ! In fact he had never heard of it ! The private script for 28 days cost me £56 which he wrote on wrong slip !!I dont think my Gp will prescribe it despite him writing to him and asking him to . I shall stamp my feet as Ive worked all my life for the Nhs and Ive had enough now. Gabapentin is same at 1800. Taken me off Dipyridamole and codeine but upped Clonazepam to 2000mcgs . The first night i slept from 10 til 5 so amazing tho legs woke me at 5am. Last night pretty rubbish again , so feeling low today . I think I prob do need a bigger dose. Going to make appt with pharmacist tomorrow so wish me luck ! Neurologist taking me on his nhs books but 6 month wait minimum .What are your thoughts on the dose ? If no joy at drs I shall email his secretary and see what she can do . Hope you are well ? A
The targinact is a low dose and although the normal instructions are to take it every 12 hours it doesn't last that long as both Madlegs1 and Joolsg have said and there is apparently a netflix document stating that. They advise to take it every 6 hours as you may experience mini withdrawals. According to the Mayo Clinic Updated Algorithm on RLS 10 to 30 mg is the usual effective dose. The Naloxone in it doesn't affect it.
For research showing buprenorphine is effective - print off the appropriate section of the Mayo Algorithm. mayoclinicproceedings.org/a...
Also Andy Berkowitz' s You Tube on it. youtube.com/watch?v=nCoKMIN...
or this one by the same author academic.oup.com/sleep/arti...
So ... things are much better without doubt . Days and evenings good . Take 1800 mgs gaba over the evening , an oxycodone 10mgs at 10am and 10pm although he has just put me up to 6hrly if required and 2mgs clonazepam at bedtime. Im getting off to sleep fine but then legs wake me 2- 3 hrs later and i have to get up. Not awake for long but just annoying ! Any suggestions ?
I came off Requip last summer it took me 8 months to slowly reduce the dosage. It was a terrible experience and at times I wanted it all to end. I now take gabapentin and methadone and it mostly is under control I now have a burning sensation in my right thigh that bothers me but not as much as when I was on Requip. Keep in touch with your Doctor on what you should do next.
Welcome to the forum. You will find lots of help, support and understanding here.
Looking at your profile you mention muscle weakness. That could be a side effect of gabapentin. The burning sensation could also be a side effect. You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose.
If you stay on gabapentin, you may know this but in case you don't: Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen (which is why you first had RLS when you were pregnant) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
For your insomnia I recommend lunesta. I take it and it works very well.
Nitelite are you in the Uk ? If so did you have to fight for methadone ?
Sorry i missed your post . No not anything else apart from b12 and iron . Completely off da's now and Targinact didnt help so now on Buprenorphine and Rls has gone 100% . Problem is gp wont prescribe as not used for rls so back to the neurologist hoping he will prescribe again
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