insomnia

[Saladl]

I have been off pramipexole for 2 weeks now but insomnia is terrible. I was prescribed lorazepam to help me sleep. It made my restless leg worse. So many meds aggravate it. Has codeine helped anyone. Tramadol helped me relax, but never a good sleep. Running out of things to try. And getting desperate.

[Joolsg]

Pramipexole withdrawal causes SEVERE RLS symptoms and little sleep for WEEKS.Have you had blood tests? Have you been prescribed replacement meds like pregabalin?

[Jumpey]

Yes codeine worked for me for many years.Have you had your iron levels tested?

[Saladl in reply to Jumpey]

Thanks for reply. I will ask my doctor to prescribe some codeine. She gave me larazepam which made my rls worse.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

As Joolsg said withdrawal from pramipexole causes little sleep. I

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] it won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg (25 mg pregabalin) 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. (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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

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, 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.

[Saladl in reply to SueJohnson]

thanks for reply. This forum is wonderful. Such helpful info. I just read the mayo clinic update algorithm. So helpful. My doctor is definitely not up to date on rls. Lack of sleep is worse than my rls right now. Doc prescribed larazepam but made my rls way worse.

[BeachGolfer]

I’d suggest trying CBD oil ( I take 100mg) or THC Indica ( not Sativa ) gummies.

[chonz123]

i heard that the withdrawal is awful. Remember that you have to start with taking away a very small amount, titrating to your goal, I am not doing that yet, as much as I would like to be off of the meds. I don't think I could do it. Tell your Doctor how bad your sleep has been. I wish you good luck with the transition.

[707twitcher]

Gabapentin seems to help many people with sleep (including me). I don't know if these effects are dampened by damaged dopamine receptors from DA use such that it may not help much until you have been off the pramipexole longer? But it can't hurt to try if you haven't already.

[SueJohnson in reply to 707twitcher]

Unfortunately if you dopamine receptors are damaged gabapentin won't help no matter how long you are off the DA.

[tuckerdog109]

Trazodone is doing well so far for sleep and no effects on the neuropathy . Might be work trying if you haven’t done so. For me, Pramipexole 3 times a day has pretty much eliminated symptoms. I take one at 1-2pm, one at 6: 30 pm and one around 9:30 pm.

[HemiDodgeRam]

I have been weaning myself off pramipexole for a couple of months now and trying to switch over to gabapentin but my sleep which never was great

is getting worse

[SueJohnson in reply to HemiDodgeRam]

See my long reply above. Your sleep is probably worse because of your weaning off pramipexole.

[GaryHB]

I was prescribed Trazadone to help with sleep. It doesn't affect rls and it really helps.

[Daisy2408]

hello Saladl. My experience is with dihydrocodeine which was not prescribed for RLS but I found by chance that it helped. I was warned off lorazepam for RLS but I am prescribed it for occasional use. My method is to take a lorazepam to calm down about 2 hours before bed then 2 dihydrocodeine at bed time. Possibly one in the night if RLS kicks off. Hope that helps. Daisy

[Jtwin]

I used to help at fibromyalgia meetings, and we had a speaker say that vit b6 is good for restless legs.