Hello RLS tribe, I'm looking for advice on medication I take for rls, (I've had all the iron blood work done and am currently high in brain iron stores) I take 20mg of iron biglycinate daily to keep it high, along with magnesium malate, omega oils, vit c & b vitamins, currently what gives me a decent night's sleep is 900mg of gabapentin which I take in 3 doses 5,7 & 9pm along with 0.088mg pramipexole and 60mg of codeine I worry about the long term effects of all these meds and here in Ireland the only reason I can get 60mg of codeine is because I need a hip replacement, otherwise it's difficult to get doctor's in Ireland to prescribe opioid meds, I was able to get codeine phosphate but it's unlicensed now and my doctor won't prescribe it so I have to take it in a dose mixed with paracetamol, I know sleep deprivation is worse for my health but the meds are bringing me down, I'm 49 and spend most days crying, I hide it from my family they think everything is fine, my doctor wants to put me on an anti depressant and I'm reluctant because I know they can worsen rls, I went on hrt gel 3 years ago because my rls was getting so bad & I had heard that hrt can help, but I've found no difference, if I try to wean myself off any of the meds my rls gets so bad I have it day & night, arms, legs, shoulders, and sometimes I feel like my mind is going mad and I can't focus on anything, especially in the morning, or like last night when I went to bed and fell asleep for 1.5hrs then woke up with my mind racing and feeling dizzy, no one understands, except other rls sufferers, my eyesight has gotten so bad lately and I saw that it's a side effect of gabapentin, I don't understand why certain meds only work for a period of time, I thought I had been doing well when I first started the gabapentin with the pramipexole, and I know I'm probably augmenting on the pramipexole but I refuse to up the dose as I'm well aware the withdrawal is appalling, anyway, I just needed to offload to a bunch of lovely strangers who understand x
Looking for advice: Hello RLS tribe, I... - Restless Legs Syn...
Looking for advice
You certainly have a lot going on.🥵
I always look at triggers first - so have you kept a food diary?
So many things set off RLS. Most processed foods. ,msg artificial sweeteners, sulphates, alcohol rising agents.
That makes for a very restricted diet- I have to avoid or severely restrict. sugar, fizzy drinks, alcohol drinks, most delicatessen offerings - hams, sausages sauces etc.
Hidden msg is a huge concern. Gravy mixes and stocks are particularly bad. Original Bistro powder is ok. But not the granules.
Organic Kallo stock has "no added msg"--- now ,you'd think that would be grand- but Google that phrase. Get educated🤔😝👹
Sue will come on with a load of advice, so I won't be going on too much.
And I haven't even started on medications such as statins, PPIs, antihistamines, antidepressants and whatever you are having yourself.🥵
You can see the picture!😝
Good luck.
Daithi.
Hi Madlegs, yes I've cut out most of the triggers, especially alcohol, I really miss a nice glass of red but any time I have a drink it drives my rls through the roof, I avoid sugar especially at night and use xylitol to sweeten drink etc... one tea & coffee in the morning and am on decaf the rest of the day, I can't take any meds that say 'May cause drowsiness' as anything with an antihistamine is a no no as I'll get zero sleep. Its trying to get off pramipexole, I've been doing as Sue Johnson said & shaving a little off with a blade, but I'm just getting 1.5hrs sleep before symptoms kick in, the I'm pacing the floor during the night or popping more solpadol just to stop the crawling, I'm like a crazy woman at the moment, cranky and snapping at the kids, my symptoms always ease in true rls style around 6am then I'm up at 7 getting kids out to school, this morning I found it difficult to drag myself out of bed and I never go back to bed when kids go to school because I never seem to be able to sleep! Sorry for being such a moany Mary! Thanks for replying
If the gabapentin is affecting your eyesight, you might want to try switching to pregabalin. Although they are 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. The equivalent dose of pregabalin is 150 mg and you can switch directly without coming off the gabapentin first. If you take calcium don't take it within 2 hours. There are 2 antidepressants that don't affect RLS - trazodone and Wellbutrin.
Hi Sue, perhaps it's time to try pregabalin again it didn't agree with me first time round, I think it's since I added codeine regularly to the mix that I've been feeling really down, thanks for all the advice x
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, estrogen, 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, 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, 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, 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.
Super advice as usual Sue xx
When did the depression start? Why are you on gabapentin and codeine as well as the Pramipexole?The reason I ask is to find out the timeline of the drugs and when the depression started.
Gabapentin and pregabalin can trigger depression for many people. Opioids can also trigger anxiety/ depression.
Rather than add another med to the mix, it will be useful to ask yourself if any of them triggered the depression.
You say your RLS got really bad 3 years ago. Presumably you were on Pramipexole then. Did you then add gabapentin and codeine?
If your RLS was bad 3 years ago on Pramipexole alone, it would strongly indicate you were suffering drug induced worsening ( augmentation). Pramipexole actually worsens the disease.
Is the RLS now fully controlled and are you getting 7/8 hour's sleep a night? Are you getting daytime RLS?
You need to establish what triggered the depression. You also need to ask yourself if the RLS became worse 3 years ago because of the Pramipexole.
Then you can plan a way forward.
Normally, I would suggest you get off Pramipexole slowly while increasing gabapentin. But if gabapentin is what has caused the depression, a low dose opioid would be better.
I know of a few people in Ireland who have been prescribed low dose opioids for severe RLS, so it is possible, but you may have to change doctors.
Involuntary Dancer and Madlegs are both on low dose opioids , prescribed in Ireland. But like here in the UK, prescribing guidelines may be different in each County.
Hi Joolsg, the pregabalin didn't agree with me left me feeling really weird, the gabapentin helps me sleep or did until recently but it's affecting my eyes, I moved to the west of ireland last summer and have been unable to find a gp within an 1hr radius of where I live to register with as they're all full so I currently have no doctor here, it's the same on the east coast where I'm from, I did try changing doctors but everywhere is full up, there seems to be a shortage of GPs in Ireland, there were 3 in the surgery where I used to live and I tried all 3 of them, one was good enough to listen to me and admitted that I knew more about RLS than he did, he even agreed to give me clonazepam to help come off the pramipexole but clonazepam made my rls worse. I used to change my meds anytime my symptoms worsened but at the moment I'm on everything that used to work, just feeling sleep deprived and fed up, thanks for replying
Also I think the feelings of being down started when I started taking the opioids on a regular basis
If the depression started with opioids, usually gabapentin counters it. If it hasn't, trazodone or wellbutrin are RLS safe.If you're sleep deprived, is that because of insomnia ( wakefulness) OR is it RLS that is waking you?
If RLS, it would indicate that Pramipexole is the culprit and you should consider getting off that while slowly increasing gabapentin.
Average gabapentin dose is between 1500 -1800mg taken in 600mg doses 2 hour's apart.
Most people need an opioid to settle the increased RLS as you reduce Pramipexole. Reduce by half a 0.088 every 2 weeks.
Once off Pramipexole, your RLS should settle and actually improve.
Many of us experienced worsening RLS while on Pramipexole or Ropinirole.
I now have zero RLS, night or day, and sleep 8 hour's a night on 0.4mg Buprenorphine. Most GPs are terrified of Buprenorphine and methadone but these meds are now the preferred opioid amongst top US experts. They don't cause addiction or tolerance and the Massachussetts General Hospital Opioid Study is confirming this.
Thanks for the advice Joolsg, I really appreciate it, I'll keep going with reducing the pramipexole as the rls wakes me within 1.5hrs of falling asleep so I'm guessing it's the DA and I'm on it over 5 years now I think, im glad i never increased the dose even when i was sleep deprived it was so tempting! I'll up the gabapentin while reducing the DA and I'll try my doctor for buprenorphine, he might give it to me short term to get me off the DA as he told me he wouldn't give me clonazepam to help me off it and I managed to talk him round, so fingers crossed!
Show him the Mayo Clinic Algorithm, ask him to look at RLS-UK website and also the Massachussetts General Hospital Opioid study. All set out the average doses of opioids used for RLS and the Massachussetts Study shows addiction and tolerance do not occur.
Fingers crossed he helps you off Pramipexole. It is really bad for around a month and then the RLS settles. You then realise how bad the Pramipexole was making it.
I would agree - start with getting off the pramapexole as the augmentation is what is making your RLS worse, instead of better. I reduced to half the dose, then 1/4 and then went cold turkey because I realized that the lower doses weren't helping at all and I was going through a very prolonged withdrawal. Prepare yourself for a night or few without sleep - you need your family's help with this. After that you should have a more clear picture of what your RLS is really like. I don't know why doctors are still prescribing it.
I'm in the process of reducing the pramipexole, the advice I get here is priceless, I'm so grateful I'm on a low dose pramipexole so I'm hoping that increasing the gabapentin while reducing the pramipexole works, I tend to give up after about 4 nights of sleep deprivation, but knowing I have so much support on here drives me on, thank you so much for your reply, I will continue reducing the dose x
It was only thru the folks on this site that I started to understand how bad Ripinrole truly was. I had not taken it but for a couple of years but augmentation started and it just got worse. I reduced the requip slowly and didn't sleep a lot especially at the very end of reducing. Also started Gabapentin about a month towards the end. I cleaned and exercised thru the night but since I am retired, the lack of sleep wasn't that bad. Now 6/7 months later, I never have restless legs but a few tingles every so often. Good luck, and so happy you are on here now. Wish I had found it years ago
Thanks Opie, so glad you got off ropinerole, that was the first DA I was on and it worked for 5 months before augmentation kicked in, I'm 5 years on pramipexole and I'm so glad to hear my symptoms should hopefully improve once I get off the DA, the wonderful people on here have been so much more helpful than any doctor! Wishing u the best x
I know you’ll have some good advice on your thread, but I just wanted to support you and say I’m sorry you’re going through it.
Same as Marlayna, thank heavens for this site. Thinking of you Loopylegs and sending you lots of good wishes and positive vibes!! Hope something works for you. X
I'm in England and I take Targinact which is a slow release opiod, it's licensed for rls and helps me tremendously. It also lifts my mood.
Super! I'm so glad you've found something that helps, I'll be mentioning that to my doctor, thank you
Hi. You definitely are suffering and need some relief. I have been using CBD oil in the night when I start getting tinglings, and twitchings and cramps, pain, and spasms in my legs. I wake up around 11:00-12:00 , take three drops under the tongue, and go back to sleep. It works in abut 5-10 minutes. Then I sleep until about 3:00 and I take 3 drops again. That takes me to around 5 or 6:00. It is not perfect, but I do get chunks of sleep that keep me going. I still am tired in the morning, but not like when I have to function with 3-4 hours of sleep and am a zombie. This whole situation is just appalling. So many people suffering from such a bizarre problem, and so much lack of good medical knowledge about the condition. I hope you get some sort of help.
Thanks for replying, I did try a few different cbd oils and unfortunately I didn't get any relief, what one are you on?
Hi. Well I live in the US so if you are in Ireland, that is a problem. I can buy the CBD locally, but I doubt it is available nationally and I think it is made locally. And even if it were available, the shipping cost to you might be prohibitive. But the website is evolvecbd.com. You could check it out. I buy a tincture of 30ml/600mg CBD. I don't know how much you were using. I would not give up on it. Is it legal to use THC, the active ingredient in marijuana, in Ireland? That would be more potent. Do they prescribe medical marijuana there? If they do would your primary care provider prescribe it? I have a friend who went to a functional doctor and has a prescription. I am so sorry that it has not been an option for you. Don't give up. Each company does its own thing and it is possible you could find one that works for you I hope.
I too take gabapentin but at a 1200mg dose. I have been experimenting lately with the timing of the medication. I have found that when I take the medication closer to bedtime, it works the best. I now take 600 mg at 9:00pm and 600mg at 11:00pm with my bedtime at midnight. This has worked the best for me. Sometimes I get 6-7 hours of sleep a night. Sometimes more if I am lucky. I too use to take some of the doseage at 6:00 pm but found that to be ineffective in helping me sleep. I would suggest taking your prescription closer to your bedtime. By the way, I have very few symptoms of rls during the day with this doseage. I do hope you find a solution soon.
I'm glad you told us your story and I can completely relate. I just had my meeting with the sleep doctor who several times mentioned "you are on so many meds". I could write the book on sleep hygiene, don't drink alcohol, sleep separately from my husband now etc. I also have cancer and a fungus growing in my lungs so the meds get very complicated. It sounds like you are doing everything right and yet still are sleep deprived. So, know our community understands and wish "the force be with you' each and every day.
So sorry to hear you have Cancer, rls is so minor compared to that, and you have rls on top of Cancer, when you so badly need rest, thinking of you and sending big hugs for a speedy recovery 💗
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