Hello I just joined because i was recently diagnosed with PLMD. The doctors don't really seem very informed about this condition.
My ferritin level was fine around 200 so I decided to not supplement that even though the hospital advised me to. I then went onto take Pramipexole (didn't help) for around 3 weeks but discovered augmentation so stopped.
I have since been back to the doctor and raised my concerns about Dopamine antagonists & asked to be prescribed Gabapentin. The doctor seemed willing to prescribe it but wanted to check with Neurology first, which is fair enough.
So my question is what should be the dosing strategy for Gabapentin? What dose should I start with? Does it need to be built up gradually?
Thanks for any advice.
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drover123
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Welcome to the forum. You will find lots of help, support and understanding here.
I'm very glad you were smart enough to know not to take a dopamine agonist.
If you are over 65 and susceptible to falls beginning dose is 100 mg . Otherwise the beginning dose is 300 mg. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you.
Take it 1 to 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 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Thanks so much for your reply Sue, so I'm in the Uk & fortunately have a few years yet until i hit 65 (42). Does that mean i can start on a higher dose?
Welcome to the forum Drover123. Were you diagnosed with PLMD via a sleep study?
And is it the case that you experience daytime tiredness/ non-restorative sleep?
I was diagnosed with (severe) PLMD at around 38 years of age but had experienced RLS on and off from the age of 24 or thereabouts.
I started medication a year or so later having tried improved sleep hygiene, melatonin and an iron infusion.
Because my medication journey has brought its own set of problems, i'd encourage anyone to try everything possible before starting medication. Especially given that should you need medication; you'll likely need it for a long time. I really wish i had tried more things before resorting to medication. (I'm not anti-medication BTW).
Interestingly, some of the leading researchers in the field say that if people have PLMD alone, then it doesn't need to be treated. It's only where there is also RLS. It's a difficult concept to get one's head around but the thinking is, is that most people have periodic limb movements, so it shouldn't be classified as a disorder. And there is doubt as to whether it is the periodic limb movements that cause non-restorative sleep, or whether this is some other issue at play. They say that periodic limb movements alone don't need to be treated.
It's interesting that pramipexole didn't help. Side effects aside, that's usually the one medication that works for most with RLS/PLMD. It may also be that the dose wasn't sufficient.
SueJohnson has already listed things that help/are problematic. Just to reinforce that, some lifestyle interventions that may be worth considering in the first instance are:
1.If you're on any medications, check that they don't contribute to PLMD. Anti-depressants are a common culprit but there are many others.
2. Melatonin has been shown to trigger RLS but also reduce periodic limb movements.
3. Keep a food diary to check for any triggers. It took me years to figure this one out. It's difficult to identify food triggers if you don't have RLS however.
4. Avoid vigorous exercise. Moderate exercise is best in morning. Walking in the evening may be helpful.
I didn't have a sleep study only a overnight blood oxygen/heart rate test, which seems to be normal nowadays here in the UK.
Yes my sleep is awful and i'm generally tired most days. I'm not entirely sure if I have RLS but have certainly had some of the symptoms on and off over the years. I don't get pain in the legs that most people get with it, just an erg to move my leg. A couple of times I have experienced a strange sensation in the muscles above the knee, kind of like they are filled with liquid if that makes sense? I've had that a few times over the last 4 years but it doesn't last more than a few weeks generally.
I'm not sure the Pramipexole had a chance to work as I only took it for 3 weeks & at the lowest possible dose? My GP certainly though it would need more time.
I'm not taking any other medications.
I did discover some Vitamin deficiencies (B12, Folate) through testing this year but have been addressing them since around Nov 23 .
Not sure about Melatonin as I'm sure I read somewhere its not advisable to take if you under 65 or so?
Yes diet is very very difficult to get right or find a problem with. I have been battling with this for years. I think now a lot of that is related to stress.
Exercise doesn't seem to make any difference to me, I can lie on the sofa for weeks or do regular cycling and it doesn't seem to change anything....
I'm sorry to hear that your sleep is so bad. It really is the worst isn't it?
I haven't heard of blood oxygen/heart rate test being used to diagnose PLMD. I may be wrong but it doesn't seem to be the most effective way to diagnose the condition. I have had 4 overnight sleep studies over the years and have found them to be very informative in terms of ascertaining degree of limb movement and associated micro-arousals (awakenings that one isn't aware of) as well as otherdata.
Melatonin can be used by all ages but perhaps prescribing rules are different in the UK (to Australia). In fact that was one of the things we first tried in my son when he was about 2 years old (he also has PLMD). The evidence regarding melatonin is mixed but it may be worth a try.
Vitamin B12 deficiency has been linked to RLS. Hopefully increasing your levels reduces the PLMD symptoms. Vitamin D is also said to help.
Good thing to stay away from the dopamine agonist. When you experience augmentation, it's beyond awful.
I have found that 100 mg of pregabalin is enough to help me out. I stagger around in the morning for a while because it's still wearing off. It helps my PLM somewhat, but it is what I need to cope with neck pain from whiplash. Without it, I wake after about 4 hours in pain and can't go back to sleep.
Maybe I should start another thread about this but I recently bought a smart watch to monitor myself sleeping & according to that some nights I don't get any deep sleep at all & my oxygen level drops down to around 80% sometimes. It also shows me waking up multiple times, basically all night. I also sometimes use a motion detection camera to record me & that generally will be triggered all night long with just 1 or 2 intervals of around 30 mins without me moving at all.
Are these smart watches very accurate? It doesn't seem that good on oxygen levels compared to another finger one I have, the watch is normally 5% less in comparison.
My PLMD was caued by artificial preservatives like potasium sorbate or metabisulfites . Potassium sorbate (E202) is the preservative they use in practically any margarine and dips and metabisulfites can be found in fruit juice condiments and wines. I cured myself without medication by avoiding these foods. I now stick to butter and don't eat sandwitches whoever has made them and fruit juices without preservative can be found in health/whole food shops.
FYI: I have very horrible case of PLMD, after trying Tegrotol, Carba Levdo, I’ve found the very best protocol is Baclofen in divided doses of 20 mg at 4pm, 20 mg at 8:30 pm, and again at 4 am when I wake up jerking. It can help with sleep and RLS to a degree.
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