I have seen so many posts here where people freely advocate the use opioids for the treatment of RLS without warning them of the side effects. Yes, it does get rid of the RLS, however, it can also have very serious down sides. I will relate what happened to me. In addition to the commonly accepted side effects like severe constipation and an itching all over my body that kept me awake scratching all night, I suffered from:
1. frightening hallucinations that spilled over into my waking hours
2. an inability to function in any activity because I was always dozing off and unable to concentrate
3. memory loss that I still have even after stopping the opioids
4. but the worst problem was a frightening claustrophobia that was so severe I was unable to use my cpap machine to breathe. Prior to the use of opoids, I had never ever experienced any form of claustrophobia.
The doctor, thinking that a different opioid would change my symptoms, prescribed about 7 different opoids, all of which had the same outcome.
Since, as I'm sure RLS sufferers know, antihistamines aggravate the RLS so the only one I was able to use to combat the itching was Allegra, and it did help somewhat, but it also caused more constipation.
While it was a relief not to have the RLS, it was not worth the price I had to pay. I am back on the Pramipixole, which I have been using since it first came on the market in 1997 and had been on doses as high as 4mg. In addition to augmentation, it has caused a dyskinesia of my arms and legs and torso but over the years I have been able to reduce the dosage to a 0.125 tablet which I take 3 times a day and at least I have some sleep. It is not a great solution but at least it doesn't mess with your mind. I am allergic to any and all other medications, including marijuana prescribed for this condition.
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PerniciousRLS
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Hi PerniciousRLS, that sounds horrific and goes to underscore how damaging drugs can be - especially if they are the wrong drug for the wrong person.
One would have thought your GP would have discontinued all opiates considering your response and the availability of the likes of Gabapentin and Pregabalin.
Also goes to highlight the absolute necessity of a competent and caring Dr, with one of them at your side the horror of RLS should be well minimised.
I am sorry if I am 'teaching my granny to suck eggs' but with your name I assume you have looked into the dietary aspects of RLS such as Gluten and dairy? They can cause a lot of issues and, imho, well worth trying to exclude them for a while... just in case!
A word of warning - Pramipexole can REALLY mess with your mind and many have destroyed their lives with compulsive gambling, spending and sex. As it effects Dopamine it effects the mind. I can still recall the intrusive thoughts - every time I drove my car a thought of driving it in to another vehicles would get stuck in my head, (not that I would have acted on the thoughts), which was, as I am sure you would agree, very distressing.
Hope you find a solution soon.
in reply to
You've reminded me. I used to get these sudden impulse to drive into a wall or the back of a lorry or even jump off a cliff.
My doctor was not a GP but a renowned RLS specialist whose reputation exceeds his ability.
I do see a correlation between sugar and exacerbation of of RLS but have not checked out other foods although I try to eliminate gluten. Dairy is a hard one for me to eliminate and have to say I haven't done so but it is definitely something to consider. Thanks for your suggestions.
Pramipexole probably does mess with my mind but I've been on it so long, I'm not aware of it and it doesn't put me in that dreadful mental fog as do the opoids.
Thanks for all your help and suggestions. The saying -- "whatever gets you through the night" expresses how I am feeling since I am nearing the end of my life anyway.
I am a big believer in the saying - there are no atheists in a foxhole.
I am (hopefully) coming to the end of a badish period, Not bad, not terrible and certainly not one of those nights where I prayed for death but enough to send my life into upheaval. I would take and do just about anything when things aren't good and I fully understand all my brothers and sisters in suffering would do the same. I have come off drugs that messed with me big time and I would take them again if I needed them,
The thing is that we share our knowledge and experience as we all know what works for one wont work for another and what will work this week might not work next week. I have gained so much relief from Drs and posters here and hopefully some of the things that I have shared have brought some ease to others.
The diet thing can be difficult especially as there are so many products that contain milk powder (like Chipsticks) and others that have gluten in them (some jelly sweets). IF you make a menu and research well and commit to a month the benefits can make it much easier to keep going. The hard part is not cheating!
I am very interested to hear that opioid use gave you claustrophobia. I had the same thing happen to me and it was so bad I was hospitalized. I was convinced I was going to suffocate. Fortunately my oxygen levels were good. No one suggested it might be the opioid I had just started taking. Thank you
I was on premipoxle for eight years now nearly 3 months I came off it but since my life is hell I tried every medication pregablin, Rotingine patchs,gabapentin cocodamol but nothing helps except cocodamol I was thinking same should go back to premipoxle at least I was not taking cocodamol that much I need talk to neurologist next week see what he suggest
Ranjits - if the co-codamol is giving you ease, the Dr knows exactly what you are taking and you are only taking it to treat the RLS symptoms then what's the problem? Leaving aside a history of addiction, if the drug is taken properly, with supervision, then there should be no issue - enjoy the relief!
Sorry to hear you are having a problem with opiates. What form and dose were you taking?Low dose opiates have been a life saver for me. I've reduced my pramipixole to .125 along with 2.5 MG of Methadone and my RLS is gone.
The low dose Methadone doesn't seem to have any adverse effects except some slight constipation which is easily fixable.
I have been having terrible problems using opioids to help me get off Pramipexole. The side effects from Premipexole are truly horrible with uncontrollable spasms powerful enough to knock me out of my bed and onto the floor. However my GP had the idea of prescribing an anti convulsion medication called Baclofen. I just started and had my first night of sleep in days. It doesn't cure RLS but it seems to lessen there'll of withdrawal. Have you come across this? Has anyone had any experience of this drug?
Oh my goodness, I have felt the exact same things but never put it down to RLS or medication! I never dared tell anyone about these feelings and thoughts for fear of upsetting my family or people thinking I was going crazy. But being on Ropinerole has made me feel exactly like that, Things are improving slightly now I have reduced to 1.25mg , was previously on 4 and sometimes more if going through dark times. Little did I know at the time that the effects of this would eventually make dark times darker. I am now feeling a lot calmer in my head and can often recognise impulsive/compulsive thoughts and behaviour.
I do realise this was an old post but only just read it and it was as if I was writing it. Putting into words that you think you might be going crazy is so difficult to do, thank you so much for that post.
Hi and sorry to hear of the troubles you've had with opioids.
I just wondered if you are aware of the alternative first line medications for RLS, that is, other than dopamine agonists.
These are the alpha 2 delta ligands pregabalin or gabapentin (or gabapentin enacarbil in the US).
These too have side effects, the principle ones being drowsiness, dizziness and some problems with walking. These can fade after a few weeks, but in some people they can continue. They can also cause blurred or double vision to some degree or another.
Some people find that they cause weight gain.
Some people find that it causes some visual loss and this doesn't appear to be reversible.
Like other drugs with side effects different people experience different side effects and to different dgrees.
You can easily get a list of all side effects, but that may be more offputting than the reality for any individual.
They don't work equally effective for everybody, but then, neither do the dopamine agonists.
People with central respiratory depression have to be extra cautious with the ligands as they can cause respiratory distress in a minority of people. This is also true of opioids.
I guess you have obstructive sleep apnoea, which is not the same as central respiratory depression.
The FDA issued a warning about the ligands. You can read it here
I've tried to give a balanced view of these drugs and it's interesting that the FDA's warning contains this paragraph.
"All medicines have side effects even when used correctly as prescribed, but in general the benefits of taking a medicine outweigh these risks. It is important to know that people respond differently to all medicines depending on their health, other medicines they are taking, the diseases they have, genetics, and many other factors. As a result, we cannot determine the likelihood that someone will experience these side effects when taking gabapentinoids."
The main advantages of the ligands (or gabapentinoids) are that the risk of augmentation is very LOW and there is no risk of Impulse Control Disorder.
My personal experience is of taking gabapentin with good results and minimal side effects after years of suffering augmentation due to pramipexole. (Which I no longer take!)
Thank you Manerva for your extensive knowledge and information.
Before the advent of Mirapex (pramipexole) in 1997 I was given Neurontin (gabapentin) and several years later (Horizant) another form of gabapentin and all of them made the RLS even worse than it was. Then I was prescribed Lyrica, which didn't exacerbate the RLS but had other ill effects so as you see, I am unable to take any prescribed medication for this condition. I think I am stuck taking the "Devil I know."
I'm sorry that your experience of opiates has been bad, but it should be noted that- as you say yourself- that you are particularly affected by many medications.That is most unfortunate, but should not be a cause for deterring others not to consider opiates for extreme RLS.
For many ,opiates have been a lifesaver, after trying all other alternatives.
For 300 years, opiates have been the gold standard in RLS treatment.
A tiny number of people may be adversely affected, but the overwhelming majority are extremely thankful to be able to get complete relief.
Thanks for writing of your personal experience, and I really hope you get some sort of relief from the good suggestions given in this thread.
Perhaps the U.S. is backward and way behind the times but no doctor here even knew what RLS was until approximately 50 years ago and then it was not well-known throughout the medical community. So my question is: who was prescribing opioids for RLS 300 years ago?
I grew up and lived in a major American city, Washington DC so it was not backwater doctors who didn't know.
hopkinsmedicine.org/neurolo... See third Section of the Article under the sub-title "Opiates." I consider almost all medicine sacred. Whether it is opiates, LSD, marijuana, valium, or my personal favorite - ferrous bisglycinate. I say thank-you to the Forces that Be on an almost daily basis for the iron. Similarly, when I had a root canal I thanked the Forces for Novacaine. I love the story (supposedly true) that when a passenger aboard a plane was having a panic attack a doctor on the plane told a flight attendant to ask over the loud speaker as to whether anyone had a benzodiazapine on them. Over half the passengers raised their hands. Life is hard so I say hold the medicine in your hand say your blessings and take it. Then get to work finding a better way if you feel the need. I always feel the need to find a better way whether it's baking a loaf of bread or mopping the kitchen floor or treating my RLS.
Dr Willis was a London based Doctor who prescribed morphine for his patients in the 1600s. He described RLS as ‘leapings up of the tendons in their arms & legs with cramps and such unquietness and flying about of their members that the sick can no more sleep than those on the Rack’
A perfect description of the nightly torture of RLS.
I would be interested to know your opioid prescription?After weaning myself off Ropinirole (0.5mg to 0.25 then 0.125mg for 8 weeks) but no chance lately of seeing a consultant I asked my doctor for 50mg tramadol capsules, two to be taken each evening effective 14/1/2021. Well after months of sleep deprivation I have been rls free. Can't believe I can go to bed and sleep!!!
It is to bad you have reaction to opiates bc I don’t know what I would do if they stopped them completely from my regimen. They lowered then a lot in 2020 so I now struggle with the RLS devil not daily though. But enough. I’m older now and can’t deal with it like I used to. Plus my added feet & back issues, fibromyalgia several arthritis’s. I’m not good. Opiates are a saving grace.
Hey there, my RLS family;
I am one of those people that is able to take opiates without any of those issues with the rare exception exception of itching sometimes. Maybe I am lucky because I was diagnosed as being a rapid opiate metabolizer. (I can take oxycodone or methadone and have a negative drug test the next morning. I take 10mg of methadone 3 times a day with up to 20 mg of oxycodone for breakthrough RLS. I have taken this for years.
If you (meaning all y'all) have not read the study on opiate use for RLS by the RLS Foundation, I would encourage it. I am sorry that the original author of this letter had such a terrible time with the opiates. While it is safe for the majority of people, there are a few people that should not take it because of the side effects described or activation of addiction (which has been shown to be much less than the general public.).
Interestingly enough, with all the other non-opiate RLS drugs that were described, I had the same symptoms from severe depression, wanting to jump off the Sunshine Skyway Bridge, severe body aches that were enough to send me home from work, addictive issues such as a porn addiction and an intense desire to gamble (which I fortunately resisted), the encroaching dreams while awake which manifested themselves as hallucinations, and falling asleep at the wheel of the car which resulted in an vehicular accident on each of two consecutive days and the ultimate quitting of my job as a process server (the guy that delivered court papers to homes and businesses) because I could no longer safely drive.
These appeared the result of the terrible sleep deprivation that I was experiencing and/or side effects of the drugs which did not help the RLS one whit. The use of opiates did drag me away from the abyss of suicide thought from the unrelenting 24/7/365 RLS I was experiencing in the late 50;s and early 60's.
I am really glad to see your letter as people do need to be reminded that use of opiates with RLS may not be trouble free for some people. For a number of us though, they are a viable alternative without significant problems. Like the other RLS drugs, opiates can at least be tried to determine their potential benefit in this horrible disease. Do bear in mind what Pernicious RLS has said, though.
Thank you for sharing your experience and for letting me share mine.
thanks so much jeroldin for your share. it sounds as though opiate were a godsend to you and I only wish I could have had your experience. right now I am at my wits end as to what to do since I am allergic to all prescribed meds for this dreadfdul condition.
I think your horrific response to opioids is unusual. I've been on them for over 20 years without the sort of problems you relate. Constipation is expected of course, and a diet high in fruit and veg etc. is crucial. My son in law takes them too, without any adverse affects. To me they have been, and are, a Godsend.
I am aware of how comparatively easy it has been for me - although I suffered this Hellish disorder for almost 30 years until my son broke his wrist and came home from hospital with some opioids he didn't want and I took them (I'd try anything, as we do) and thanks to a specialist in RLS my life changed and I've been on them ever since. Of course, my life is not altogether normal, but it's liveable at least.
I really feel for you, I was thinking about your troubled life all day. I pray that you will find an answer soon.
I am really sorry that you are not finding any relief for your RLS. I believe there will be better treatments out there in the future. If you have access to a jacuzzi, that may provide some relief for you. I keep mine at 92º to 94º F. I find that the swirling water overdrives that unpleasant feeling in my legs and arms. Best of luck to you and keep trying different modalities out there for some relief. One day, there will be a cure for this.
I’m sorry to hear you had so many terrible side effects to low dose opioids.
I sympathise. We all have different reactions to medications.
I suffered terrible panic attacks when I first started OxyContin- & I was in despair because I had suffered terrible augmentation & withdrawal on Ropinirole and Gabapentin didn’t help so it was a last resort. Luckily Dr Buchfuhrer suggested a small dose of pregabalin & it stopped the panic attacks. I reduced the pregabalin & luckily I no longer get the panic attacks.
Opioids are often the last resort option for many but if the side effects are intolerable, the only option is to try Gabapentin or pregabalin or go back to the dopamine agonists.
I feel for you because augmentation on the DAs is utterly unbearable.
I'm maybe being just innocent. But I thought a major with opioids is that they're highly addictive?
A few years ago I had a knee replacement and was prescribed Oxycodone (Oxycontin) to cope with the post-op pain. It worked fine for me, but my GP was not happy that the hospital had prescribed it.
Very true. If you try them and exhibit signs of abusing them such as asking for a larger dose or asking for refills before it's time, Huge red flags for your doctor. Opiods are usually a last treatment alternative so it's a risk/reward situation. I've been on them for over 20 years with great success and maintained the same dosage the whole time which is fortunate. As most here know severe RLS is unbearable. When you find something that helps you hold on for dear life. Which for me means self monitoring my thoughts and actions when it comes to using opiates for RLS. Sure when the occasions occur when your rls is dominate and overpowering the Opiod you automatically think if you take more it will help. That's where you have the conversation with yourself. Do I want to cross that line? Do I want to be short on meds at the end of the month? Do I want to jeopardize the relief I receive by pissing of my doctor? Hell no. Untreated RLS is far worse than any high or added relief I could gain from abusing the opiates. Of course my body is dependent upon the opiates which is no different than alot of medications. One would definitely have to go through the weaning and withdrawal process to go off them. Addictive behaviors and dependancy are related yet also different.
Sorry to hear you're body didn't react well to Opiod treatment. Everyone is different and react differently to each medication. I had severe reactions to the Parkinson medications which led me to try opiates for relief.
Hi. Thank you for your post. Do you have any advice on how to taper down from 10mg of methadone? I am having some of the same issues you describe although it was working ok for me and I am dealing with the side effects. The bad news is I have had 2 doctors stop prescribing it for me due to opioid monitoring by people who know nothing about RLS or even are medical professionals.
At any rate, this monthly terror of wondering if I will get more or I will have to go through the withdrawal I had when I went one night without it is terrifying. I would rather go back to the hell of DA drug land.
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