I feel VERY disappointed that my RLS symptoms did not improve ..in fact I feel worse!
A TYPICAL 24 HOURS….I wake around 2am with minor rls( but enough to prevent me going back to sleep)
Toss and turn for next hour as symptoms get worse then get up and have 30mg codeine which takes about 1.5 hours to take effect.I usually fall back asleep between 4-5 am.
Always wake about 2 hours later with symptoms in hands and down one side of my body.Toss and turn again for next hour before getting up, exhausted yet again, to start my day!
No afternoon naps or relaxing for me, this monster never allows it!!
Finally it’s 8.30pm, time to take my Targin10/5mg.
10pm, it’s working..Yeah,Bliss!
11pm..off to bed, glorious sleep until 1-2am when those horrible symptoms start all over again.
ANY SUGGESTIONS PLEASE how I can improve the quality of my life??
My sleep specialist doesn’t want me to take any opoids during the day.
Am I correct in thinking my symptoms are numerous mini withdrawals ?
Sometimes in desperation I consider going off opoids and restart sifrol.
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Retiredlady
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Yes they are mini withdrawals since Targin only lasts 4 to 6 hours. Can you show your doctor that so he can prescribe enough that this doesn't happen? nhs.uk/medicines/oxycodone/...
You won't get addicted. Dependent yes because it controls your RLS so you won't want to stop it. But that is a heck of a lot better than sifrol. According to the Mayo Updated Algorithm on RLS the usual effective dose is 10 to 30 mg , so you would still be below the maximum dose.
Thanks Sue, don’t think I should have watched that OxyContin doco!
Can’t get an appointment with my sleep specialist for another month.
Is it safe to be taking two different opoids( Targin and codeine)?
Would it be safe to take a diazepam as well at 11pm a couple of times a week ..hoping it might prevent me waking ?I am asking because it’s generally not safe to mix opoids and benzodiazepines.
I don't see any problem with taking codeine with the amount of targin you are taking. The main risk of diazepam and opioids is respiratory depression but there are a number of people on the forum taking both. You might want to try taking just part of a tablet of diazepam with just one of the opioids and see how it feels ( shortness of breath, frequent yawns, and an increased heart rate) and then try with a larger dose of diazepam and then a full dose and then both opioids.
You were dependant on Sifrol. Sifrol causes far more damage than opioids for RLS. Dr Winkelman's opioid study shows that RLS patients do not become 'addicted' or develop tolerance ( the need to increase the dose to achieve the same cover). We are all dependent on meds for RLS. It doesn't 'disappear' unless there's a simple cause ( anaemia).
Follow SueJohnson advice but if taking Targinact 5mg every 6 hours doesn't cover the RLS, you can ask for a long half life opioid ( methadone or Buprenorphine) which covers RLS 24/7.
I had severe nausea for over a week. I couldn't move. I lost 7 pounds. BUT it stopped ALL RLS the 1st night, so, as it was my last chance to live a normal life I refused to stop taking it. At day 8, I had a 'light bulb moment' & remembered cancer patients used cannabis for nausea. It works when anti nausea meds fail.I had medical cannabis from my Ropinirole withdrawal, so started 0.3ml every night. It stopped all nausea. I then stopped the cannabis after a week & the nausea had gone.
Most people say nausea lasts a week & then goes. You can ask for Zofran, a safe anti nausea.
Thank you for that info.I am writhing around in bed just now having woken up suffering severe( not mini)withdrawal from 30mg codeine I took 3 hours ago.Only thing I can do is get up and make a cup of tea and ‘pray’ it settles so I can pinch a little more sleep so I can get through the day.__
I so wish I could live a ‘normal’ life… this is debilitating!
I was Determined to stay on Buprenorphine. I was up every night for 5 years on Oxycontin and pregabalin. They helped, but I would still be woken 2 or 3 times a night.I honestly didn't see the point going on. Sleep deprivation is used as torture & that's what it was.
The nausea was really, really bad. I had to stay still as any movement caused me to vomit.
I am so glad I didn't give in.
My life is just bliss. I can sleep in the day, at night, sit for hours on a plane, watch a film at the cinema. Zero RLS. Ever.
If you decide to give it another try, use half the 0.7 dose. Or ask for buccal film & cut the strips.
Have cannabis ready, or alternatively zofran anti nausea pills. Raw ginger grated in tea might help.
The nausea does seem to settle after 7 to 10 days.
First, your dose of Targin is too low - it has a short half life. Second, you should have more appropriately been prescribed buprenorphine or methadone - proven to be the most efficacious meds for severe RLS symptoms. Thirdly, when sufferers like us are usually going to be on low-dose opioids for the rest of our lives, it makes no sense to call it an "addiction", any more than we would use that term for a diabetic's use of insulin.
Let me tell you, when my doctor put me on low-dose methadone five years ago, it was trading in a life of broken-sleep misery for a life of 8 hours of blissful sleep every night. Best of luck!
My only concern is I feel very fatigued..hoping this will settle when my body becomes accustomed to the Nuprenorphine…still far better than RLS though!!
Yes I was.I slowly myself off as it made me feel ‘thick in the head’ the next day and didn’t appear to be helping my RLS symptoms at all.I had been taking 100mg for 9 months.
I had previously tried Gabapentin for 6 months too
In my experience RLS can be caused by neuroinflammation which can be caused by foods in our diet, that;s why it tends to be lowest in the mornings after a night of sleep anf fasting and worse in the evenings or at night after a day of bombarding the body with inflammatory foods. Google 'inflammorory foods' and 'anti ifammatory' and change yor diet. RLS is just the tip of the iceberg. Your inflammatory diet could be causing cardiovascular disease, diabetes, arthritis and a whole host of other problems.
Yes, I agree. I think that some lists include red meat because a lot of people eat it in barbecue sauce which is rich in sugar. I have increased my consumtion of red meat recently with no noticeable effect.
I sent a URL to Dr. Berry about inflammation as it is suggested that it, may be a contributing factor for RLS. The URL won't open for you and I have given up on YouTube, with all its commercials now. Sorry!
Hi, so sorry to hear of your suffering. I too have suffered for 25 years after an operation left me with severe RLS and much more. I was on opoids for all that time which had caused me to have many other issues, including addiction! I took myself off all of the opoids and started Ropinirole 3x a day and Restless Legs otc. under my tongue during daily flare ups. This has given me the most relief, thus far...I will pray for you...good luck!
Are you aware that up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
How much ropinirole are you taking?
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and 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, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) 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, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
I do not think the medications work, but just make everything worse. Through the years I have found that completely eliminating sugar is the best remedy so I am on Keto diet. I also make sure to drink alkaline water in the evening. Between no sugar and alkaline water I have not had any symptoms. I have had RLS since I was a teen, I am 70 now so had a lot of trial and error. Main advice ....stay off the drugs!!!
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Itching on opiates?
Medication advice.
Agmentation advice please
