Hi UK here, I’ve had RLS for as long as I can remember, but it has been severe for about eight to ten years, I was an RN, but had to give up because of lack of sleep, I’m in my early sixties
I’ve been on various medication including Ropinirole, Carbergoline, Pregabalin, Gabapentin, now on Pramipexole.
They work for so long then stop, I’m now getting worsening symptoms, pain, insomnia (04:25 Thursday here, and no sleep), I think I may be augmenting ...
So what next? Back on one of the Gabas again? Add something in?
Scream??
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Shelag
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Yes, I hear you. Something about aging that doesn't agree with RLS. I think our already few and small dopamine receptors become ever more lousy. With that said I am one of the lucky few that is helped by iron, but only in the form of ferrous bisglyciante (25mg) or Proferrin Iron (which comes from red meat). And I'm even luckier in that it affords immediate relief...within one hour of taking it on an empty stomach at night, right when I start getting the RLS. When I took iron in the morning (about two weeks before switching to night time) it did NOTHING for my night time RLS. It works 100% of the time and eradicates 100% of RLS. If you've been on the dopamine agonists you might need two 25mg tablets. Always talk to your doctor about it. It does not work for everyone. Here's the only article I have ever found that says to take the iron at night. It also states to take it on an empty stomach with vitamin C but that's only when you take ferrous sulfate which is no where near as bio-available. rlsfoundation.blogspot.com/... It makes sense to take iron at night because not only is that when most people get RLS, but the available iron in our bloodstream drops at night. People with normal dopamine receptors clearly aren't bothered by that drop but we with lousy dopamine receptors just can't seem to handle that drop so it seems to me. I truly believe it is that iron in our blood, not really our stores, that keeps our dopamine receptors humming along. When it drops at night all hell breaks loose. Plus I've read that we with RLS have like no brain iron stores whereas the non-RLS world does have these stores. So we really really rely on that blood iron. Iron is the glue that makes dopamine stick to our receptors or something like that.
Hi Shelag, sorry to hear about your situation.
Pramipexole is the worst of the dopamine agonists which are the worst of the first line drugs for RLS in the long term.
It does sound like you're suffering augmentation. Symptoms are worse, occur in the day not just evening, occur in the arms or other parts, not just legs and occur within seconds of relaxing, sleep down to 2 - 3 hours a night or less?
Pramipexole is therefore making things worse rather than better. Particulatly, on top of the hyperarousal that RLS causes, dopamine agonists cause additional restlessness worsening insomnia. Things should improve if you reduce and stop the Pramipexole.
The problem is you will still have RLS. So as you're aware, you will need something to replace it with. OR, as some people do you may have to keep switching from one thing to another with no permanent solution.
It's a shame that the gabapentinoids didn't work for you. Did they not work at all, did they cause intolerable side effects or did they work at first, then stop working?
From what I've learned on this site and further reading it seems the best option as regards "refractory" RLS, where all first line drugs have failed, is an opiate.
Certainly there are recognised experts in RLS who support opiates for RLS.
In the UK Targinact (Oxycodone and Naloxone) is licensed for RLS where Dopaminergic treatment has failed.
Some members of this site also use low dose Methadone.
You'll have to convince someone to provide a prescription however, GPs are reluctant to do that and when I asked a GP I was advised to see a neurologist privately. NHS waiting six months or more, RLS isn't considered urgent!!!!
You might be more able to persuade a GP to prescribe Codeine Phosphate "for pain" in the meantime.
Otherwise, a possible, but only short term help, if you've not tried before is a benzodiazepine (e.g. Clonazepam) or Zopiclone. I have been prescribed both of these. On a very limited basis!
There are various other things you could explore if you haven't already done so. Sorry if you have.
Blood tests - significant for RLS is your level of Ferritin, magnesium, potassium and vitamins D and B12.
Correcting deficiencies in these is known to relieve RLS. If you have no deficiency then extra (e.g. supplements) won't help.
Ferritin - a significant number of people with RLS benefit from raising their Ferritin level to at least 100. If you've had this done in the past and been just told it's "normal", anything above 20 is considered normal, so you need to know the number.
Some people use cannabis medicines for RLS, anecdotally with some success. I'm not suggesting you use "street" drugs, this is dangerous. Some people, I hear now grow their own.
Marijuana is better than hemp, I believe.
You could also try CBD oil. Unfortunately, although this, in some forms, is legal, it's not regulated and you don't really know what you're getting when you buy it. A recent BBC survey tested 9 CBD oil products showed that some of them were actually illegal and one had no CBD in it at all.
The "illegal" ones had too high, but not dangerous levels of THC.
There is contradictory information about the amount of THC in it. Some sources say it's effective without this, some say not. "Legal" CBD oil, in the UK has (supposedly) a limited amount of THC.
In other words, it's confusing.
I suppose a reputable seller, at least won't rip you off, e.g Holland & Barratt.
Although RLS is definitely a physical and neurological condition, NOT psychological, it can cause mental health problems and psychological therapies can help in managing WITH it. Similar to the psychological strategies that help people living WITH cancer. They don't cure cancer, but they improve quality of life.
Mindfulness CBT is something I have personally experienced and would recommend. Some mental health trusts provide this. This is very variable, depends on funding. It's very popular and lots of places offer mindfulness courses at a reasonable cost. Be aware though, they're not CBT.
Another option is Acceptance and Commitment Therapy (ACT). I have no idea however, where to access this.re
I can also suggest, no. cure, but another help, is "sleep hygiene". One particular aspect of this which I find personally very significant is LIGHT.
This is a physiological mechanism. Light regulates our circadian rhythms by affecting the level of Melatonin hormone.ci
The trick is to get as much natural daylight as possible during the DAY, maybe even using a SADS lamp and avoiding light as much as possible at NIGHT. I.e. dim lighting, avoiding using backlit devices 2 hours before bedtime i.e. TV, PC, tablet or smartphone.
If none of this is helpful, at least you have my sympathy, I do appreciate what chronic insomnia is like. I too retired early. It is easier to manage when not working.
For the first week take x6 30mg Coedine tablets a day evenly spread out but ensure you take 2 of them about one and a half hours before bed.
That should significantly reduce or stop your RLS. If that works, on week 2 take x6 30mg tablets every other day.
If that continues to stop RLS continue on that cycle. If it dosent go back to x6 every day. The reason for trying to go with every other day is Coedine can be addictive so missing every other day helps stop any dependency building up.
A NHS article here makes reference to the Coedine and it being used as a treatment :
Coedine is prescription only. So you need to see your GP. Also GP needs to check if will not conflict with any other tablets or condition you may have.
Print off the NHS article and take it to the GP with you.
I tried compression socks recently. Relieved daytime symptoms of RLS about 90% and the effects carried over into the night. I am also on ropinirole and have been for about 20 years though its effects have lessened.
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