Hot milk works

[keelstep]

I have RLS and PLMD such that I have very strong muscle contractions in my legs and abdomen. It has been increasing in intensity over the last few years and may stop for a few nights then return.

The abdominal jerks are particularly distressing and will occur with uncanny regularity of from every 10 to every 40 seconds.

For years I have been taking 300 - 400 mg (100mg tabs) of gabapentin that I take in one dose around 8:30 - 9:30 p.m.

The tests (i.e.: blood tests; general sleep study all night; specific sleep study with lots of wires attached to my head, MRI,...) revealed nothing.

I have tried a few "fixes" (i.e. stretching, heat pad, meditation ...). No help.

But what clearly is effective is getting up and drinking about 3 oz, of very hot milk. The temperature must be about 160 -165F. - almost burning . (1.25 min on high in a microwave.) I use an instant digital thermometer to get the temperature right and must sip the milk gently because of the heat.

When back in bed my stomach muscles have lost their sense of an imminent contraction. My fitbit displays that I am asleep in a few minutes, at most.

I attribute the change to the effect of the heat close to my abdominal muscles. My muscles feel relaxed immediately. Plain water at same temperature does not have the same effect. Can the chemical change in the milk take effect so quickly?

Just wondering if anyone has another remedy. Or can explain what is happening.

[SueJohnson]

300 to 400 mg of gabapentin is a very low dose so it is no wonder it is not working. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." Increase it by 100 mg every couple of days 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 .

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Meanwhile 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, 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.

[keelstep in reply to SueJohnson]

Hi Sue:

Thankyou so much for your thoughtful and detailed response.

My ferritin i s 222 ug/L. In fact I have at times had it quite high and have, occassionally, donated blood, in part, to reduce it... the genitic problem of having an irish background - mild hemochromatosis.

Being 75, I am taking the following drugs every day.

Prescription:

Rosvstatin (20 mg), Ezetimibe (10mg), Apixaban (5mg x 2)

Non-Presription:

in "Magnesium Sleep" from CanPrev: (Magnesium Bis-Glycinate 125 mg) +GABA (100mg), & Melaton (2.5 mg) .

Cheers

[SueJohnson in reply to keelstep]

Statins make RLS worse for most. You are already taking a safe cholesterol drug Ezetimibe so I don't know why you are taking two.

Nexlizet is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Since you take gabapentin you should be closely monitored as it can raise the bad LDL and lower the good HDL.

Melaton contains melatonin which makes RLS worse for most. If you need a sleep aide I suggest Lunesta.

[Joolsg]

My old GP advised me to drink a glass of milk at night while I was going through severe augmentation & brutal withdrawal in 2016. I hadn't slept for 4 nights and was begging her for a low dose opioid to help me through withdrawal. I have to say that when she suggested I drink milk she was very lucky that I was too exhausted to actually follow through on my violent thoughts.I suspect warm milk helps you because it is pleasurable and releases dopamine, which helps RLS. There doesn't seem to be any other reason for it helping.

I.agree with SueJohnson. Your dose is too low to control RLS.

Also, ask for the actual numbers from your blood tests. Serum ferritin needs to be above 100, ideally 200ųg/L.

[Cidernrh]

I’ve been rubbing Neuroli oil onto my calves and spray my feet with Restless Legs spray from Amazon. This helps to ease it. My friend takes Magnesium tablets. I can’t take them because of my medication.