Hey guys, im after some opinions after a very disappointing call with my Drs today.
After things getting very bad and down to 3/4 hours sleep on 1mg ropinirole and 450 pregabalin i found some codeine and decided to try taking 60mg at night with my meds, all at the same time apart from 150 pregab during the night. Ive done this for five nights and had amazing results sleeping 7-8.5 hours, mild woozyness 45 mins after taking but take in bed so simply drift off to sleep and feel almost normal again. No real worry of deep sedation as my girlfriend said I wake if she comes in and out or a small noise so all good on that front. I am now on day three of .75mg ropinirole and no side effects/augmentation so far…
My problem is at the dose of 60mg codeine i only have 18 days dose left and no way of getting any more, my Dr is a disgrace and after talking to me like sh*t today wont prescribe me any or any opioid or furthermore anything at all, I’ve explained i simply can not get off DAs with out something and he will not help me. Ive asked for a referral to a clinic recommended in Edgbaston (Birmingham as recommended) and as im slightly out the area (its ten mins from my house) he said he cant chase my referral, yet when i made the mind bending suggestion of a thing called a phone he replied oh, i could try that, but im busy…this has been going on for a month.
I have an appointment with Dr Jose as again recommend but not for six weeks and i need to act now, also as per our call he has advised he also can’t recommend opioids.
I am worried about addiction or other problems with codeine but cant see another way off the DAs so my question is, i have to take matters into my own hands, baring in mind i reduced .25 3 days ago should i make the attempt to get off the last .75 in the 18 days worth of codeine i have, i know its meant to be .25 every two weeks but i feel i may achieve it faster with the codeine.
The only other thing to consider IS, if i did come off the DAs in that time am i leaving myself to addiction or withdrawals from the codeine causing myself a whole different program.
Bloods came back ok in the idiots opinion but i will be requesting the results myself as i couldnt trust him any less.
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RLSAndy
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I can’t offer any specific advice other than I suspect withdrawal from the codeine will not be fun. So I’d suggest reading up on it a bit and allowing for a taper down rather than running out and going cold turkey.
You obviously need a competent doctor, so good luck with that. 🤞
Check out cocodamol. It is OTC combined with tylenol. Perhaps you can use it with less of the codeine you are taking so you can stretch it out long enough to get off it and then wean off the codeine.
I did think that. I tried to reduce faster and dropped another .25 early last night but felt symptoms coming on for rls so had another .25 meaning i still had the .75 so thsts my body telling me slow down. So frustrating as im so close to getting rid but i know i have to take it slow and listen to my body.
I was taking 90mg of codeine a night - am lucky as it was prescribed for something entirely different by a consultant and had no problem getting more. It did and does work but yes it does cause imo slight addiction but OK after 4/5 days coming off- nothing like stronger opiods! Now I am much older than you and know drugs (good experience in my hippy days) and can cope with side effects. I did not find the coming off codeine (after about 3 months) that difficult. However I came off codeine because I did not like the long term effects of it - wooziness, mind not as sharp as it used to be and fatigue. At the time I thought it was me as had been unwell but now come off codeine realise it was the side effects of the codeine.. I am retired but otherwise certainly it would have impaired my ability to do my job well - accepting that it is a trade off with the sleeplessness and as am not working can adapt.
Every few days I take 5mg Zolpidem - prescribed very sparingly by Dr as am insomniac even without RLS.
After a lifetime RLS I am now taking Magnesium Bisglycinate - yes I know I poopooed Magnesium for years having tried it to no avail. However I was told that not all magnesium is the same, there's a lot of cheap rubbish on the market and I now got really good brand and to my amazement it seems to be helping - that with 400mg Gabapetin - both taken 1 hour or so before bed. A really good expensive lotion Clarins Lait pour jambes Lourdes also help for that hot feeling in feet just before dropping off. The legs do come back for a little while around 6am or so but not so bad.
I hope this help - Codeine works but imo is not a long term solution because of the major side effects.
Keep in mind that the closer to 0 Ropinirole you get the more difficult withdrawal can be. And the first few weeks after can be the worst part. If you do speed the withdrawal up then just know you will probably suffer more. I understand your reasoning though. Such trial and error we have to go through! Your doctor sounds heartless. Shame on him. Wishing you the best outcome.
Echoing the sentiments here - and good luck to you. All I can say is, I'd rather have to cope with opioid withdrawal later than face RLS now. I'm still no closer to a proper diagnosis or treatment, but I certainly have real trouble sleeping without pain relief, mainly due to the symptoms - but there is obviously codeine withdrawal issues too.
Ropinirole doesn't do what I need it to do at all, and I'm on the maximum dose, so I suspect something else is the cause of my severe ankle and lower leg discomfort (which does manifest as a RLS type illness).
There is a lot of resistance to opioids in general, and I do understand to a degree, being the medical equivalent of looking at a box of kittens to make life seem better as opposed to an actual targeted analgesic. But, this stuff is fairly low strength, and where can we realistically go if we cannot treat or even understand the underlying cause?
The only way RLS is diagnosed is by the following:
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
If you are on the maximum dose of ropinirole and it isn't working then you are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
This means you need to come off it as it will only get worse. First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.
To come off ropinirole (pramipexole), reduce by .25 mg (pramipexole half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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 already see 1 on your profile - Citalopram makes RLS worse. A safe substitute is Wellbutrin or trazodone.
Most blood pressure medicines and blood thinning medicines make RLS worse but there are safe alternatives. What ones are you on?
Hi, just a comment about the word 'addiction'. The mis-use of opioids has caused the medical world to panic and tell us that we'll all get addicted. However, I feel it's far more helpful to consider that with the long term use of opioids, like with anti-depressants and other long term medications, our bodies become 'dependant' on them. We aren't addicted to them.
Addiction is when we keep wanting more and more of a drug and wanting it for the effect it has on our feelings or experience like a 'high'. Addiction isn't when we want to use it to get rid of the horrendous effects of RLS.
I've just Googled and the first article that came up is below.
'Dependence occurs when the body physically relies on a drug. Addiction involves changes in behavior. A person with an addiction has difficulty not using substances or doing rewarding activities, even if it is harming them. A person can have an addiction without necessarily having a physical dependence.19 Dec 2023
Addiction vs. dependence: Definitions and differences
I know it's a pedantic difference in many ways but if we, in the RLS community can use less inflammatory terms then it will help the acceptance of opioids as a genuine and less terrifying medication for those who are just starting on their journey.
Good luck with your quest to find relief. By the way, I swear by buprenorphine (patches which I can get as I can't access the oral medication), having been on every other medication known to man without success. Buprenorphine has saved my sanity and my life.
little update. The codeine after a week is bot having the same effect as I expected but i think helping a little, i still cant get any from the Drs but can get more. My problem is now and has been most of the time i wake at 5-6am with symptoms and 5am is just to early for me id really like to sleep until 7 and get closer to 8 hours, i go to bed 8.30/9pm as it is but when I work i dont get in until 11pm sometimes. I still have .75 ropinirole to come down so expect that to be 6 weeks at least.
I pray that once im off it the pregabalin will work better but wonder what medication there is that had more like a 10/12 hour life as i have to take my meds around 7pm to not get an rarely onset of symptoms and ruin my whole evening.
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