Chocolate helping me when I start RLS - Pregabalin 100 mg not working well!

[Moonwalker1967]

Hi,

I am on Pregabalin 100 mg which is not helping me as much as Pramipexole.

I still get RLS in front of the TV @ about 9.00 p.m. and am up several times a night.

I tried pickle juice and everything else.

Unfortunately, eating some chocolate or biscuits is helping my mind to get off RLS, the RLS stops and I can sleep for a while. Has anyone else had this experience and I wonder why!??? My boyfriend told me NOT to eat chocolate in the night as this will keep me awake, lol! Plus I will gain even more weight. Sob, sob!!!

What else would help apart from chocolate. I keep on piling on weight, with being menopausal and on L-Thyroxin 100 mg due to thyroid gland removal.

Super unhappy

Thanks in advance.

[SueJohnson]

It is probably the caffeine in chocolate. Caffeine like in coffee can either make RLS worse or can make RLS better. Have you tried increasing the pregabalin as 100 mg is a low dose.

[Moonwalker1967 in reply to SueJohnson]

Thanks, Sue! Will try coffee to reduce calories. Good idea, will increase when finished this course of Pregabalin. How much do you think I need. This is soooo scary

[ChrisColumbus in reply to Moonwalker1967]

Sue will almost certainly advise on this, but NICE guidelines for pregabalin for RLS are as follows: Initial dose of 75 mg for people aged under 65; dose can be doubled after 3–7 days, and then increased incrementally on a weekly basis if needed to the recommended maximum daily dose for RLS of 450 mg.

Sue's recommendation may differ from this: if so, I'd probably follow Sue's guide as NICE often seems to be a bit behind the curve.

[SueJohnson in reply to Moonwalker1967]

Add 25 mg every 2 days until you find the amount that controls your RLS. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of the pregabalin.

[Moonwalker1967 in reply to SueJohnson]

Good advice, Sue! Thanks so much 🙂 Especially the one with magnesium. I didn't know that! Any other supplements interfering with Pregabalin. It's tricky adding every couple of days as my GP usually prescribes a month's worth of tablets. I will give my GP a call next week and get up to 125 mg plus ask if possible just to prescribe a week's worth.

[SueJohnson in reply to Moonwalker1967]

None that I know of.

[SueJohnson]

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, 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, 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.

[Hidden]

Why not a square or two of dark chocolate eg 85% cacao. Not much sugar in that and has loads of micronutrients.

[Truthsword]

Look, whatever works..if its safe...i drink coffee and it helps. I read somewhere low blood sugar trigers. RLS. I too have a snack and it helps if im not too far gone.

[Joolsg]

Anything that increases dopamine, the pleasure hormone, will help RLS so chocolate is fine!As others have mentioned, 100mg pregabalin is just above the starting dose of 75mg. Average dose is 150-200 mg and maximum is 450mg.

Often, pregabalin and gabapentin don't work well on people who augmented on Ropinirole or Pramipexole. Dr Buchfuhrer thinks it's because our dopamine receptors have been permanently damaged by Ro/Pramipexole. Pregabalin and gabapentin didn't help me at all.

So, ask for an increase and refer GP and neurologist to the Mayo algorithm and rls uk website.

If an increase doesn't help, the RLS is refractory and low dose opioids may be required.

If you have thyroid issues, they often are accompanied by low serum ferritin so hopefully, increasing serum ferritin will help both RLS and thyroid.

It's so frustrating to find the right treatment after years on Dopamine Agonists.

[Moonwalker1967]

Joolsg, it's super frustrating, you are right. All went so well until Augmentation sob, sob! Unfortunately, my full thyroid gland was removed 15 years ago as my ex husband complained that I was always anxious and never rested, rushing around day and night and was constantly stressed. To cut a long story short, thyroid gland was checked and full lumps then completely removed.

I will do as suggested re. Pregabalin. Hate taking tablets. Usually believe in nature "sorting it" - unfortunately wasn't to be my RLS got lots worse during menopause!

[enjoy2013]

Hello Moonwalker1967,

First of all, if I may, I find that making health decisions just to please my partner is not a proper health policy.

Second, I'd like to draw your attention to the fact that pregabalin is not less than an amtiepileptic drug. It is also used in sleep disorders, anxiety disorders and others, but pregabalin is not some innocent molecule. Stating pregabalin is a serious matter and so is increasing pregabalin dose. So if you sleep with a chocolate tablet, go for it.

Manage your blood glucose levels, go for dark chocolate or try coffee.

And if it works so well on the long term, you could even try to withdraw from pregabalin. But not without involving your doctor. It has to be done vee progressively.

Good luck

[Moonwalker1967]

Dear enjoy2013,

Thanks for your lovely message.

The chocolate "help" is when I take Pregabalin 100 mg and still wake up. Unfortunately without medication I am completely sleepless. I have had RLS all my life, so unfortunately have to go down the medication route, sob .sob