When should I take pregabalin?

[Doctorplacebo]

Hello fellow sufferers. I was just prescribed pregabalin for my severe RLS by a neurologist and the instructions are to take it "at bedtime." Obviously this is incorrect since it will take some time to take effect. How many hours before bedtime should I take it?

[SueJohnson]

1 to 2 hours before bedtime.

[Hidden]

Omg, you’re a real physician, Dr. Placebo. I’ve noticed lately that several members on here want to get to the bottom of what exactly RLS is and why we get relief when we stand… among other questions. I have all the answers 😅. After you read this you might want to give something else a try first before the Lyrica.

As I’m sure you know, RLS means we have small and few D3 receptors in the Substania Nigra (SN) along with brain iron deficiency, which probably caused our lousy receptors in the first place, per the dictates of our genes. I believe that most of us go a good portion of our lives either not knowing we have a lousy dopamine transport system or our symptoms are mild and intermittent. Until something happens ie an inflammatory disease, spinal or nerve injury or we’re prescribed SSRIs. If you ask I will explain how these events and substances make the “symptoms” of RLS worse, but not the receptors themselves. The worsening of our receptors is the territory of the DAs and possibly consistently over-eating. And it seems that age itself makes RLS worse.

Ever wonder why RLS is mainly a condition of the night? It seems it has to do with the fact that we can’t seem to store much iron in the SN. As a result, we rely VERY heavily on serum iron, which plummets at night (in everyone) with a nadir of midnight. Iron is the grease and glue that keeps our dopamine transport system chugging along. Thus, the solution for me, and many on here, is to take a highly bioavailable form of iron (ferrous bisglycinate) about an hour before bed, on an empty stomach. 25 to 50 mg. My RLS is gone in an hour for one night only. I must repeat every night

Just recently I found out that someone (probably a member on here) is marketing this concept which we on here came up with. It is a supplement called “Legs Be Still.” I’m not recommending it, I’m just amazed that someone out there has a pill with 65mg of ferrous bisglycinate in it and is telling people with RLS to take it an hour before bed on an empty stomach. Just the way we’ve been telling people to do for the past 8 years. Anyways, it’s that night time drop in serum iron that brings on RLS when you’ve gotten to that point in your life where RLS is no longer quiet or mild. By morning, serum iron is well on the rise and we get a reprieve from the RLS.

When we stand and walk dopamine is released in a nano-second to balance us and coordinate movement. Some people will sit on a stability ball in the evening probably not realizing that it works because whenever your brain senses imbalance it releases dopamine. I have stood sometimes while leaning on a wall and I can still feel some amount of RLS. I guess my brain isn’t sensing much instability. Strange feeling - I don’t like it.

So to sum up, we with RLS have this rather pathetic drip of dopamine, aka a neurotransmitter, that bounces down our central nervous system and makes its way to our peripheral nervous system where it quiets our arm and legs. The non-RLS world has a stream, not a drip. Woe onto us if anything happens to our bodies that lessens or interrupts that drip. The vast majority of the world can injure their spine and never feel so much as a twinge of RLS. Not so with us. The vast majority of the world can take SSRIs (which are dopamine antagonists) and not feel a twinge. Not us.

We are literally dancing on the head of a pin. One wrong move and we get all out RLS. Anything we can do to stay on that pin is a good thing. Many people swear that fasting after an earlyish dinner and until breakfast helps their RLS. Others swear by magnesium, but I haven’t been able to figure out why. In “theory”taking a benign, short acting dopamine ANTAGONIST, like berberine, should up-regulate our receptors, just as the Agonists down-regulate them. Must be taken in the morning. Just too painful if taken at night. Supposedly anaerobic exercise will up-regulate the receptors as well as intermittent fasting. To me, these are the closest things to a “cure” that are out there. But if you stop doing any of these things for too long then I assume the receptors will return to baseline which of course is lousy. However, these things can also be used to expedite a return to baseline after prolonged DA use. Baseline seems pretty darn good once you’ve been on DAs.

Got all that 😃

EDIT: The iron seems to work well while someone is on the DAs, but as soon as they’re off or even almost off, it’s not enough by itself. Nor is it enough if someone is on SSRIs. Nor does it seem to be enough by itself with certain auto-immune diseases or CKD or serious nerve injuries.

EDIT 2: It sounds like magnesium inhibits dopamine release so in other words it’s a dopamine antagonist though it’s necessary for the synthesis of dopamine. It has anti-depressant effects per lots of articles. Anti-depressant generally means anti-dopamine release. It’s given for migraines - maybe because dopamine antagonists are good for migraines. So I can see how taking it day in day out can up-regulate our dopamine receptors and in the long run be good for RLS. It sounds like calcium is actually more of a dopamine agonist. Well here’s magnesium: pubmed.ncbi.nlm.nih.gov/920...

BINGO: sounds like we should be taking calcium by night because it increases dopamine release and then magnesium by day because it is a dopamine antagonist that theoretically should up-regulate our receptors. Any lab rats out there feeling lucky? Article in attached post ¥

[Hidden in reply to Hidden]

link.springer.com/article/1... This might be why calcium channel blockers are bad for RLS.

[Hidden in reply to Hidden]

So while calcium channel blockers are terrible for RLS in the short run, they might be great in the long run. journals.lww.com/neurotoday... I have convinced myself, now more than ever, that a somewhat benign, short acting dopamine antagonist taken on a daily morning basis, with breaks after three months, is THE ANSWER, for up-regulating our receptors and maybe even delaying augmentation or preventing it altogether. Probably depends on how strong a dopamine antagonist it is. It sure sounds like something people who are withdrawing from the DAs should take to hasten the return to baseline.

[DicCarlson in reply to Hidden]

This should be a fresh post - you kind of hijacked the post asking about timing for Pregabalin. Many times members have very important observations about supplements, food, timing, interactions, exercise, etc. Like your comment about Berberine - I had upped my dose and now I will go back to the original AM dose (for cholesterol management). Thanks

[Hidden in reply to DicCarlson]

I did hijack it. My bad.

[Hidden in reply to DicCarlson]

Dic, please keep us posted about your cholesterol. If any group of people need an alternative to statins it’s us 😵‍💫

[Pam34]

I’ve been on Pregabalin for several years and find my optimum time to take it is about 7pm. I go to bed between 10-11pm. Experiment and see what works best for you.

Pam

[Hidden]

For me it takes around 4 hours after taking it to get me to a sleepy point, but I've been on it for around 7 years.Why not try it a couple of hours before your usual bedtime and if you're sleepy, retire earlier?

[nick-the-turk]

Doctor prescribed me to take 150mg in morning and 300mg at night but I take them around 9

[Hidden in reply to nick-the-turk]

Don’t expect a response any time soon or a thank you. Nick, did you ever try the iron?