I started with RLS about 40 years ago. Over the past 15 years, it has been diagnosed as severe.I have tried all of the dopamine drugs, none worked except for pramipexol, I have augmented and spent the past year still trying to get off this.
I am under a sleep specialist and on 50mg of oxycodone per day.
I am at my wits end and very depressed. Currently just gone onto Agomelatine 25mg per day.
Currently having another gull on bout of RLS in both legs and arms. Very limited sleep over the last month.
I can't see, and don't want a future on heavy drugs. I am trying to find a good neurologist and see what they can offer. Very little good specialists for RLS in Australia.
The anti depressant is stopping me sleeping. (besides the RSL).
I have had enough and would appreciate any advice. THANK YOU.
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Trish8433
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Agomelatine is an atypical anti depressant, but does appear to worsen RLS, like most other anti depressants.
Unfortunately, withdrawal from Dopaminergic drugs does cause depression and anxiety and can also.cause DAWS ( dopamine agonist withdrawal Syndrome).
The only safe anti depressants are Bupropion and trazodone.
It's a difficult time, because withdrawal from DAs is difficult, brutal and causes intense RLS, with little or no sleep.
Obviously that increases depression and anxiety.
However, if you do succeed in getting off DAs completely, the RLS settles, you sleep better and the depression lifts for most people.
Many of us know exactly what you're going through.
Have you had full panel, morning, fasting bloods? Raising serum ferritin above 100, preferably 200 can help to settle augmentation/withdrawal.
How are you taking oxycodone? It's fast release and only covers symptoms for about 3 or 4 hours and for many of us it can cause mini opioid withdrawals, if not taken at regular intervals over 24 hours.
Longer half life opioids, like Buprenorphine or methadone are more effective.
So, keep reducing the DAs slowly and get your serum ferritin raised.
Once off DAs, the oxycodone should start to cover your symptoms.
Wishing you strength.
It's really tough, but many of us have gone through it and are in a much better situation.
Thank you for a very helpful and concerned reply. I did try taking the Bupropion however my RLS was worse than ever.
I havnt tried trazadone as feel too scared at this stage to immediately try another antidepressant , especially after the very negative experience with bupropion.
Re iron levels, a few years ago I was given very high doses of iv iron and this made no difference at all.
Do you have any knowledge about the intervention that a neurologist would do, besides yet more medication?? I feel at this stage it is my only hope.
At this stage in withdrawal, if iron doesn't help, there is nothing a neurologist or doctor can give to make the withdrawal any easier.For most of us it is brutal and hellish.
The only two things that helped me were kratom powder, which was legal in 2016 when I used it, and cannabis, which wasn't legal. Interestingly, kratom is now illegal in the UK but cannabis was legalised for medical use in 2019.
Vaping cannabis when the dopamine agonists withdrawal is severe really helped reduce symptoms and gave me 30 mins sleep after 4 or 5 days of zero sleep/rest.
Kratom 1 tsp as and when needed definitely reduced the severity of withdrawal.
I don't know what the legal position over in Australia is on these drugs.
Sadly, very few people have an easy withdrawal.
But I am so glad I stuck with it.
I am totally RLS free now on 0.4mg Buprenorphine.
I know there are a few people in Australia on Buprenorphine, so you could ask if your neurologist will prescribe it, but nothing helps fully until about a month after the last dose of dopamine agonists.
Thank you for taking the time to listen. I am reducing the pramipexole very slowly and was going reasonably well except for the development of severe depression. If I can get this under control I may get back to a reasonable level of existence.
I will speak to my Dr re the iron. I have tried it in the past- all it did was increase my energy.
Sorry to hear your story. I just want to encourage you - there is light at the end of the tunnel. Joolsg gave great advice. I came off Pramipexole after 20 years use and experienced terrible depression and anxiety. I was put on Trazadone and used Kratom to help and it did help a lot.
Welcome to the forum. You will find lots of help, support and understanding here.
I agree with everything that Joolsg says. and let me elaborate on what she says.
To come off pramipexole, reduce by ,125 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Gabapentin and pregabalin are now the first line treatment for RLS. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that 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 of gabapentin or pregabalin 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)."
You could also start it now and increase it up to 900 mg (150 mg pregabalin) and it might help a little and it does help you sleep.
I would get off the antidepressant and take a chance on trazodone. Trazodone also treats anxiety and insomnia. You have nothing to lose since the antidepressant you are taking now is making your RLS worse.
You said you had an infusion and it didn't help but my guess is you didn't have your ferritin checked before and 8 weeks after. One infusion might not be enough. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. And some people need it increase to over 300. Ask your doctor for a full iron panel. Stop taking any iron supplements 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.
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...
Meanwhile 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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 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.
Thank you so much Sue for taking the time to help me.
Further information for you. I have been coming off pramipexole for the past two years and now on 0.025 five days abd 0.050 two days per week. This was working well but over the past 12 months my depression was getting worse - I thought I could deal with it myself but not. Antidepressant have helped the depression but made rls worse. Having tried bupropion and agomelatine I will try trazadone.
I have unsuccessfully tried gabapenton and pregabalin in the past. They increased rls.
I will talk yo my Dr again about iron.
I have a very healthy diet and avoid alcohol , caffeine, sugars.
I don't take any supplements.
I currently see a sleep specialist, but finding a solution to the depression is overwhelming. Dr suggests a psychiatrist but I feel all I need is a good anti depressant. I exercise and have a very healthy life except for RLS.
The thought of being on strong medication for ever doesn't sit well with me. I guess I thought by now neurologist would have found a better answer. Once I get my depression under control hopefully the rls will calm down again. THANK YOU SINCERELY.
I sure hope the trazodone works for you. Hang in there.
I am confused when you say gabapentin and pregabalin made RLS worse. They can have side effects that one can't stand but I have never heard of them making RLS worse. Once you are off the pramipexole and your symptoms have settled down, I would suggest you try one of them again. I suspect it was something else making your RLS worse.
I forgot to mention that you will need to ask your doctor if you can switch directly to the trazodone or if you need to wean off Agomelatine first.
Also I would take the same amount of pramipexole every day rather than how you are taking it now.
Many thanks Sue. Interesting your comment regarding my experience with gabapentin and prebabalin. Will speak with Dr as perhaps it was other factors. I am going to try the trazodobe when I speak with Dr next week. So wonderful and encouraging to receive your comments.
Hello Trish. I understand what you are going through. I took Ropinirole for many years at a very high dose. Of course I had to get off it because of very bad augmentation. Took me a few years to accomplish complete withdrawal. At each step of my tapering I began to feel more and more of an extreme sorrow deep in my soul. Overwhelming so. I knew I couldn’t start an SSRI. Couldn’t risk my RLS getting any worse because I can’t tolerate Gabapentin or any opiates (I’ve tried them all). So adding any triggers wasn’t an option. I got to the point of begging my loved ones to give me permission to end my life. Like you I tied Bupropion. Gave me unbelievable anxiety and insomnia. I tried Trazodone, didn’t work for me (hope it works for you). I tried rTMS. Did nothing. A doctor suggested I try microdosing psilocybin. But he couldn’t prescribe it because it’s an illeagal substance. I live in California so everything is available. I tried it and it worked for me. I understand this option is probably not available to you but wanted to give you the info anyway. Mainly I wanted to say how real and gut wrenching the depression can be when your dopamine receptors can’t start creating dopamine again after being on a DA. It’s something I understand all too well. I hear some people recover with time. I hope you are one of them. This extreme sorrowful depression is so very debilitating.
Hi Trish. I've been thinking about you. Thought I'd mention an OTC supplement I took for a while called Lion's Mane Mushroom. It actually really helped my depression as well as helped with RLS symptoms. I sincerely wish I could have continued with it, but it gave me anxiety and insomnia. I know people that take it without those ill effects. Might be worth a try. Not expensive and readily available. All the best.
Hi Birdland. Pleased to report that the Agomelatin has kicked in and mentally feel so much better. Pramipexole now taking 0.025 per day so hopefully should be off it totally in a couple of months.
Being very careful with diet and following as suggested, plus no eating after 7pm. Also doing leg exercises twice daily as recommended by physio.
RLS really settled down. In fact getting lots of sleep - must be catching up with lack of sleep for many years.
I am following up with a neurologist st the end of this month as currently still on 40mg of targin (opiates,) daily and dont want this to increase .
Thanks for everyone's support unless you have been through this experience you cannot really describe it to other.
Bird land. How long ago did you try psilocybin? Do you need to keep taking it in small doses? I have been completely off of DAs for little over a year , after 18 months of pure hell reducing from a heavy dose. I still suffer from depression and have random crying spells. I have been reading about the advantages of psilocybin and I am considering looking for someone to provide the therapy.
Hello Merny5. I am not an expert but I will tell you what I know and what I have experienced. There is a form of psilocybin therapy where you take a “tripping” dose under the supervision of a professional. I understand that way is mainly for someone who is recovering from a traumatic experience. I did not do that. The other way is to micro dose on a regular basis. This method is said to reset your brain. In my opinion this is exactly what we need after DA’s. The dose is so small that there is no “high” at all. You may feel a bit energized since it is a stimulant. Unfortunately there is no manual to tell you exactly how much to take and how often. The info that is consistent is not to take it every day but rather approximately 3 or 4 times a week. The dose I started out on was 1/10 of a gram. A “tripping” dose is generally 3.5 grams. After taking 1/10 of a gram for a couple weeks I started to get some relief. I experimented with taking 2/10 of a gram, and a few times I tried 3/10 of a gram. I eventually went back to 1/10. I am very sensitive to substances. The individual has to find their “sweet spot”. I knew I was taking too much for my body when, although I was feeling GREAT, I started experiencing some anxiety and insomnia so I backed off. I’ve been taking it pretty much regularly for a year and a half. I was able to get regular dried psilocybin mushrooms from someone who grows them in northern California. I’ve heard there is a synthetic version available also. I preference the real thing. BTW, my GP gave me his blessing on this. He saw first hand what I had been goin through and had been frustrated that nothing the medical community had available could help me.
I’m so happy that it has been working for you!! Thank you for this information. So you don’t have a doctor ( or therapist of some kind) that prescribes this, correct?
Correct. Because it is illegal. My GP thinks it will become legal here in US for doctors to prescribe soon. Probably will be synthetic because the drug companies will want to get involved. In the state of Oregon it is legal for therapists to use the large dose in an office setting.
Having read the posts it’s not clear whether you came off dopamine agonists before trying alternative medication. It’s generally accepted that pregabalin and gabapentin don’t do much until a few weeks after you have fully come off DA’s and it may be true for some of the other medications. Some people end up with refractory RLS if they have been on DA’s for a long time and things like pregabalin and gabapentin don’t seem to help even after you’ve stopped DA’s but opioids normally work here. If you didn’t stop DA’s and get through withdrawal before trying some of the drugs it might be worth another go after you have come off them.
Hi Trish, I have also had gone through the pain of DA and tried Gabapentin and Pregabalin. I was on Ropinirole and recall a few very tough weeks was I reduced the dosage. I am partially managing my symptoms but I am certainly not 100% there. My RLS is usually worse in my arms and can drive me to madness. I have also reduced the amount of Gabapentin I take as it does not appear to be doing a great deal anymore. I've tried Codeine although my Doctor is reluctant to prescribe this longer term or anything stronger. It gives me hope to hear that Joolsg and other people are completely free of RLS taking Buprenorphine. My reply is more to do with antidepressants as I also suffer from depression that is not helped by RLS but is not the main or only cause. I couldn't move forward without antidepressants and know my depression to be as crippling as RLS but with different symptoms. I have taken a number of different types of antidepressants and found some made my RLS worse, I am currently on a low dose (50mg) of Sertraline that I take in the evening and it does not make my RLS worse or impact my sleep, it does keep my depression controlled and allows me to get on with life as well as trying to keep positive battling RLS. As you said, I also don't want a future on heavy drugs, or to rely on antidepressants but need them for the time, Sertraline works for me and might help you without making your RLS symptoms worse. Andrew
Have had RLS for about 30 years. Fortunately for me ropinirole worked for about 20 of those years, getting me through my working years. Now retired. I am currently on pregabalin, 450 mg, which is the most you can take. It works ok. Sometimes get 7 hours of sleep, sometimes 4-5 hours. The good nights keep me going. I have also used gabapentin which also is ok. Only other piece of advice - eat a small dinner and don't eat after dinner.
Hi dklohrey, I've been reading every post regarding the struggle to reduce/eliminate da's. I've had rls for about 20 years and pramipexole was controlling it until augmentation became obvious, I took more prami until my doctor said that's the maximum dose. I wanted off - thanks to this forum.🙏 all these smart people, with loads of experience! I'm on Pregabalin 200 mg now, and down to .125 Prami at 4pm. I had some Tramadol leftover from a surgery so I took .25 mg the last few nights. Otherwise I was exhausted, angry, sleepless and desperate. I dont know how I'll get rid of my 4pm dose of Prami in the next weeks. Do I increase the Pregabalin further? Do I increase the Tramadol? I see my doctor in 2 weeks but she doesnt know yet that I'm secretly taking Tramadol. Yes I've just had my first Iron blood panel done yesterday and not sure how to interpret the results. My Ferritin value is 120. My iron Saturation Index is .59. Any advice on next steps?? Thank you EVERYONE that has posted to share their struggles.
Hi Madlegs1, yes I was taking Feramax 150 of elemental iron until I read here to take iron bisglycinate. I just started that last night. Each tablet is 25mg. Should I take 2 every 2nd night with Vit C? I agree that I need to come clean with my doctor about Tramadol.
I will try it again tonight- the iron bisglycinate, as I think my sleep was a bit better. I may be also be stabilizing after my most recent decrease of pramipexole. That's been aweful to get much quality sleep. I'm now getting longer light sleep but not much deep sleep yet. And I really miss my evening chocolate treat, ugh!! I eat it mid afternoon instead but that's probably a no-no too. 😟
Wonderful! Not about the chocolate, about the improvement. The iron really should give you longer deeper sleep, for one night. So must be repeated every night.
Try not to eat anything in the later part of the evening. So very many people on here swear that their RLS improved when they stopped eating in the evening. I’m not a big believer in “trigger” foods- at least not for myself. I’ve never seen a correlation between what I eat during the “day” and my night time RLS. I do see immediate symptoms when I eat anything after 10pm. If I don’t eat, then my normal pattern is for RLS to begin around 11pm to midnight. However, a very large dinner means RLS for about an hour within 30 minutes of that large meal, even if it’s healthy. So, why not have that chocolate in midafternoon? 💥
We haven’t heard from you lately? ☹️ I also want to share that magnesium is doing a lot of heavy lifting around here lately. I keep track of these things. And when a treatment reaches critical mass I start banging the drum.
This should put a big smile on your face. This man went from a DA to Gabapentin with magnesium to just magnesium. And there’s been others. Scroll all the way through:
You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the pramipexole tablet and measure it. Then reduce by that amount every 2 weeks.
I wouldn't increase the pregabalin at this point until you are off the pramipexole and your symptoms have settled as that much may be enough to control your symptoms.
I'd try more nature products like, sleep tea's, organic black strap molasses for iron, moringa for iron and nutritional health benefits including sleep, mangosteen capsules or powder, paw paw, NAC, mtc oil, magnetic palser, natures sunshine kava calm and sleep, lugols iodine, Valerian, maybe cbd oil my friend was sleeping well with it. 5htp griffonia seed extract, garlic water, all medication can cause RLS to worsen especially if it occurs because of kidney issues, some of the product I recommended may cause interaction with medication, so always check first before trying organic products and be careful with 5htp, it can cause serotonin syndrome if you take to much,
I’m so sorry you are going through this! I completely understand and I can relate. After almost 3 years, I still have depression from damaged dopamine receptors. BUT I am so much better. I am sure you feel desperate for relief. It sounds like you are suffering from DAWS. Are you completely off of pramiprexole? If you are not, unfortunately anti depressants of any kind will most likely not work. ( from my experience) Have you tried cannabis? You mentioned that you do not take any supplements. Perhaps some of your levels are low, Vit D, magnesium, the Bs and you might want to get that checked. When these levels are low it can increase RLS symptoms. You are not alone and this group is an enormous support. Your depression will improve it will just take time. Just please hang in there and use this group to help.
I have had RLS for almost 50 years. It didn't get bad until about 20 years ago and various drugs help at different stages of the disorder. I am now on low dose narcotic because that's the only thing that seems to work. However want to suggest something that seems to have worked for me and might for you as well. As part of a heart-healthy diet I did several things that may have affected my RLS. The most important I was to eliminate sugar from my diet as much as possible. That Remains to be a major challenge since I love the sweet stuff. But I only slipped once every couple weeks and then it's back on the wagon. I also drink I half liter of extra virgin olive oil per week. I cut it with lemon juice and a Metamucil chaser. Third I have eliminated beef and chicken and replaced it with fish. I started the diet about 2 months ago and about 6 weeks ago my RLS started to improve and now it only bothers me about 10% of the time. I hope I'm not jinxing myself. I know everybody's different so this may not work for anyone else and in fact I don't know that it's going to keep working for me. But I've never had remissions lasting anywhere near this long. Best wishes
Thank you for sharing. Over the past few months I have also radically changed my diet. Only protein and fruit and vegetables and lots of water. No eating after 7pm. It has made a significant difference. In fact the other night about 8pm, I had three choc chip biscuits and my legs ran ALL night! I am happy to try anything.
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