I’ve been plagued by RLS for just on 30 Years now. 15 years untreated ( what hell that was), and the last 15 years on Pramipexole. This worked pretty well for me, although I’ve had to steadily increase the dose, and therefore the side effects.
My GP is happy for me to reduce the Pramipexole and has started me on Gabapentin. Although she says she wouldn’t be happy for me to take more than 600mg a day.
I’ve only managed to reduce the Pramipexole to one and a half tablets rather than 2 ( 0.5mgms) with 600 mgs of Gabapentin, although I’ve only been taking this dose for a couple of weeks.
She says my Ferritin levels are over 200.
My RLS is hereditary and is the type that sends that electric shock through your legs every 6 seconds for about and hour two or three times a night ( untreated).
Apart from any general advice for me, is there anyone on here from Aussie who has found a clinic or specialist who has an understanding of this wretched affliction?
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Misskipling
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Brendon Yee in Sydney is knowledgeable. But may be too far away.
The electric shock through the legs is not common, except when you're suffering augmentation or withdrawal from Pramipexole. I suspect it will disappear once you're through withdrawal and when you get proper treatment.
Most doctors seem to believe you can transition from Pramipexole to gabapentin smoothly. The overwhelming majority do not.
Withdrawal from Pramipexole is usually very hard with severe RLS and sleepless nights.
Gabapentin won't help much until about 3 weeks after your last dose of Pramipexole. Slow down the withdrawal. You should reduce by half a 0.088 pill every 2 weeks.
What dose were you on? You may need to get lower dose pills so you can reduce safely and slowly.
Most people will need a low dose opioid like codeine, tramadol, oxycodone to help reduce withdrawal symptoms. Or cannabis or kratom.
600mg gabapentin is a very low dose for RLS. The average is 1200-1500mg. Ask your doctor to look at the Mayo Clinic Algorithm and RLS-UK website.
Well, my symptoms have always been the same..the feeling of an electric current running through my leg ending with an almighty kick, since I first encountered this disease, so it’s not withdrawal or augmentation.
It has been well controlled by Pramipexole up until recently.
I’m not sure I could cope with coming off it without LOTS of help. I’m happy to travel. That certainly doesn’t worry me but I think it’s time to talk to someone professional who does know a lot about it.
I’ve tried Cannabis, but didn’t find it useful.
The trouble is that most doctors now are so time pressured, that they really don’t have the chance to be super involved in something that sounds as innocuous as RLS, which we that have it know to be quite the opposite.
Also contact Shumbah. She will know good doctors in Australia and those who will prescribe opioids to help reduce withdrawal symptoms.If you reduce slowly and keep going, your RLS will reduce in severity.
Most of the members of this site have been through withdrawal so know what you're experiencing.
The lack of medical knowledge and help is the biggest shock.
On the gabapentin Print out and show your doctor the section on gabapentin in the Mayo Algorithm that Joolsg gave you a link to especially where it says that most people need 1200 to 1800 mg of gabapentin. If that convinces her or when you get a new doctor, ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days you until reach 900 mg, then stop at that point and wait until you are off pramipexole for several weeks and your symptoms have settled as Joolsg said it won't help you much until then. Then you can again increase it at that rate 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. If you take magnesium, even in a multivitamin, take it at least 3 hours before or after gabapentin as it interferes with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason.
.5 mg is a large size of pramipexole and is the maximum dose for RLS so you were on twice that. Ask for a prescription for ,125 mg and reduce by half of that every 2 weeks. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. (I assume you are not on the extended release version,. If so you need to switch to the regular one)
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.
Yes, thanks Sue, I have read the Mayo Clinic information, with interest..
I’m not on any meds that exacerbate my symptoms, as I have tried a couple on various occasions with disastrous effects.
It’s a weird disease. I haven’t found any foodstuffs that make it better or worse, but mine is definitely affected by being on the water ( boating), flying, low pressure systems ( figure THAT one out) and sitting in a reclining position. Have to lie on my side.
One night it was so bad that I jumped into the swimming pool in the middle of winter, and yes, that did help!
But, as I said to Joolsg, time to talk to a professional.
You have received advice from Joolsg and Sue J which is probably as good as or better than you would receive by visiting (as i did) a so called expert in RLS. It sounds to me that the Australian health service is in a similar state to the UK GP service when it comes to RLS.
Keep chatting on this great forum as it is perhaps your best way forward at least until Europe (and Oceania) wake up to the USA's plans.
I was doubtful about your diagnosis being RLS until reading Joolsg's post about pramipexole/gabapentin switch and side effects. I doubt many none US "experts" would know that.
In my experience, Australia has a first class health system. This isn't coming from a parochial perspective...just the opinion of someone who has had a lot of experience as a user of the health system across the various states!
The only reason I would see some sort of specialist is if I can’t convince my GP to order the appropriate meds. But I’m hoping she will be open to reading the Mayo info.
I am in Sydney but can't really recommend any doctors unfortunately. I have had Peripheral Neuropathy for 30+ years and the electric shocks certainly sound like PN to me. My shocks eventually subsided only to be supplanted by RLS which has been plaguing me for years. This in turn has been compounded by sciatica from my crumbling lumbar spine. I have been seeing a Pain specialist, but they are very reluctant to prescribe enough to really help. My currrent regime is 700mg Gabapentin (which has caused some weight gain) and a small dose of Targin (Oxycodone/Naloxone) but it's not enough to give me more than some broken sleep. It's such a frustrating business I struggle not to give up at times, but the support on this forum is wonderful. Anyway, all the best to you in your quest.
If you are looking for a reasonable neurologist in Sydney, I can recommend Dr Emily Sutherland at Sharp Neurology,'The William' St Leonards Square, Suite 405, Level 4, 480 Pacific Highway, St Leonards 2065 . I was thoroughly examined for peripheral neuropathy and a number of other conditions, and only when these were excluded did Dr Sutherland diagnose with complete confidence I had RLS. I saw her about 2 years and and she was up to date with what the Mayo Clinic were saying.
See also info@sharpneurology.com, Phone 02 8021 8001
I probably didn’t describe my symptoms accurately.
The electric feeling is what I feel in my legs,,sort of like a current running down my leg and ending in a giant kick. Before treatment it would be every 6 seconds and last for about 40 minutes, at least 3 times a night.
When I found Pramipexole it was like a miracle.
I do however, get the side effects, so am trying to get off it.
So far, I’ve managed to reduce it by half. Down from .5. MGMs to 0.25. With the help of Gabapentin. Pretty happy about that.
With the help of this forum, and maybe getting my GP onside a bit more, I think I’ll be ok without seeing a specialist.. but it’s good to know there are some out there
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Restless Legs Medication - Ropinirole and Gabapentin
Looking for advice, yet again, please.
Pramipexole not working now. 
Alternative, non-medication treatment
