which way to go (severe RLS)

[daisydaisy26]

Dear members, I am here trying to help my mother, whose RLS is poorly controlled these days. Just some background info:

in 2021 she was put on Pramipexole, first just 0.125 mg was controlling her symptoms well, but it only lasted for half a year maybe. So her current dose is 0.375, which she splits in 0.125 at 4 pm (because that's when symptoms would kick in or even earlier) and 0.250 mg at 8 pm. Plus she is taking 1200 mg Neurontin split in 2 doses. But it does not always help, so she also takes 0.5 or 1 mg of clonazepam from time to time, it used to help better, now it's not working that well it seems.

Her ferritin is 96, and saturation is 19.6 - I guess that needs improvement? Might have an iron infusion next week. We found she was B12 deficient and she had several injections and is now taking a supplement.

Now an interesting point. She spends several days a week in her garden, where she almost never sits down - always busy doing something, and then RLS does not bother her at all, but she complains of tiredness and aches in her joints because of that much movement. She comes home to have some rest, and the first day RLS is back with a vengeance. Our doctor explained that movement produces dopamine but once you stop moving it gets depleted fast. Not sure I got it right.

Can someone help to decide what to do next, she is probably augmenting on pramipexole, but is already taking Neurontin, what should be the way out here? I am confused, should she up her Neurontin pills and slowly reduce pramipexole? I would really appreciate any advice.

[SueJohnson]

Definitely get the iron infusion since her saturation is low. It not only might help her RLS but will help with her withdrawal from pramipexole. I wouldn't increase the gabapentin as she is already taking a reasonable amount and it won't help that much until she is off the pramipexole and her symptoms have settled. Then she can try increasing it. On the pramipexole, she is definitionally suffering from augmentation and needs to come off it. To come off it she should reduce by .125 mg every 2 weeks or so. She will have increased symptoms. She may need to reduce more slowly or with a smaller amount. She should wait until the increased symptoms from each reduction has settled before going to the next one. She will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as she nears the end. If she finds that is still too much to reduce, she 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.

[daisydaisy26 in reply to SueJohnson]

Thank you, SueJohnson, you always come to help fast. I forgot to mention that she used to take Neurontin before starting Pramipexole, maybe around 900 mg, or 1200 mg, but it didn't help then. So the doctor added pramipexole. So I am now a bit at a loss what will happen when she gets off pramipexole, will she have to take like 1800 mg Neurontin? What kind of opioid usually helps, like tramadol? I think our neurologist cautioned against combining tramadol and neurontin as they cause something like serotonine syndrome which is fatal? Maybe I am confused, we have an appointment on the 8th of August, will discuss that. It's just so weird how making herself very tired prevents that but once she wants to finally relax it just hits so bad.

[SueJohnson in reply to daisydaisy26]

Distractions like her gardening help with RLS but when she stops them and probably sits down or maybe lies down naturally the RLS comes back. Yes after she gets off the pramipexole she will have to try increasing her gabapentin adding 100 mg every couple of days until she finds the dose that works for her. She would need to take the extra 2 hours before the earlier 600 mg which I assume is 2 hours earlier than the 600 mg she takes 1 to 2 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

Both opioids and gabapentin increase serotonin levels and this can be a problem with older people whose serotonin levels are too high which is why your doctor is concerned. However serotonin levels can be tested with a blood test to determine if that is the case currently with gabapentin. That said many older people on this forum take a low dose opioid which coming off a DA and start taking gabapentin 3 weeks before they are off the DA. And some take it before that increasing it generally to 900 mg but sometimes higher. Your mother could reduce her gabapentin to 900 mg.

Since clonazepam increases serotonin it is probably not a good idea to take it at the same time.

By the way exercise increases serotonin (which is known as the happiness hormone) as does getting out in the sun or taking vitamin D as well as high fiber diet and certain foods.

Another possibility is cannabis which Joolsg took when coming off a DA. Vaping worked best. It too can raise serotonin but I don't know if it does it as much.

[SueJohnson]

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, 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,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, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If she is 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 which she can discuss with her doctor.

[Faithatthebeach]

I’ve had very severe restless leg throughout my entire body, like restless body, with the same sensations that are felt in restless legs but all over.

If the non opioid drugs have worked for your Mother, I would stick with that but increase dosage. If nothing works as in my case, the only relief for me are opioids. The type would be decided by the doctor and patient. Unfortunately dosage is regulated by gov laws and some of us are under prescribed and still suffering.

[Munroist]

Moderate exercise is well known to help RLS. I find if I do more than 5000 steps I'm reasonably comfortable but often if I do very little I will be quite restless that night. In general it's also been found to be better if you exercise in the mornings although we are all different. Doing too much exercise can also cause restlessness as well so there's a sweet spot where you do enough but don't tire yourself out. And of course exercise and movement is beneficial for most aspects of health from balance and bone density to circulation and digestion.

[Magentayellow]

I’m sorry to hear about your Mom. I have had the condition for about 20 years and was stable on 0.125 mg prampexipole and started to need it a little earlier in the day so Dr. Thought it may be augmentation I tried Neurontin and I’d didn’t help then started on Neupro patch and it works great but I developed an allergy to it. Maybe she could try the patch.

[SueJohnson in reply to Magentayellow]

Are you off the pramipexole? Be glad you had an allergy to the Neupro patch since it is a dopamine agonist like pramipexole. You say the neurontin didn't work. Did you try it after you were off the pramipexole and the symptoms from the withdrawal had settled? How much did you take?