Waking up with RLS (need advice—taking pregabalin)

[hayzl]

I’ve taken pregabalin for well over a year now and it’s done well to control my RLS. I have a prescription for up to 375mg total daily. I have a few options: usually I just take 300mg at bed. If things are particularly bad I take the full 375mg at bed. If my RLS starts to act up in the afternoon, I split the dose with 75mg in the afternoon and 300 mg at bed. I also separately have a prescription for Ambien for insomnia, and I’ve been trying to wean off the Ambien.

This has worked pretty well but the trouble is on some of the nights where I don’t take the ambien, my RLS kicks in during the night and I have hours of fitful dreams where I have to move my legs. I eventually wake up enough to realize what’s happening and take 75 mg of pregabalin and after about 30 mins I’m okay and can sleep again.

Does anyone have advice on how to stop those RLS dreams? Is there another medication that will last better all night? Is the only option to up my pregabalin? (That makes me nervous—I’m very close to the maximum.)

As a side note, I get my iron tested regularly but haven’t noticed too much of a difference after iron infusions wrt RLS.

[SueJohnson]

If you are trying to wean off the ambien then don't NOT take it one night. Take it every night as you wean off it.

Also be consistent in taking the same total pregabalin dose or you will have withdrawal effects. 450 mg is considered the maximum pregabalin dose but you can take up to 600 mg.

[hayzl in reply to SueJohnson]

Thanks for the reply, Sue!

That’s exactly what I’m doing with the Ambien. It’s been a slow taper but I’m down to taking it 2-3 times a week.

I take 300 mg of pregabalin most nights but have been having trouble on some non-Ambien nights. Do you recommend talking to my doctor about just taking a flat 375 mg every night? He had suggested only taking the extra 75 mg some nights. He’s told me he’ll prescribe me up to 450 mg if needed, though I’d like to avoid going that high if possible.

[SueJohnson in reply to hayzl]

Yes I would suggest 375 every night.

Instead of weaning off ambien by taking it only 2 to 3 times a week, reduce the amount you take every day by 10 to 20% each week. You can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every day for a week before reducing again. That way your body gets used to the lesser amount rather than a yo yo effect by taking it 2 to 3 times a week.

[hayzl in reply to SueJohnson]

Thank you again! I’ll also look into getting a little scale. I had tried using a pill cutter on my ambien tablets, but they’re small enough that they turned to dust. Shaving some off the side might work better.

[Eryl]

The fact that you're RLS free in the morning but it sometimes kicks in after lunch points ro is being related to what you'e eaten in at breakfast and lunch. I'd guess something high in carbs (fruit juice? toast? cereal? for breakfast, a bisuit or cake mid morning?). If it kicks in at night re you eating a high carb meal late in the evening or drinking alcohol in the evening?

[hayzl in reply to Eryl]

My RLS is sometimes worse if I’ve had something sugary or I’ve been less active. But I haven’t noticed any other patterns to when it is worse.

[Eryl in reply to hayzl]

Sugar (sucrose) is only half glucose while starch is 100% glucose but loosely bonded together and is easily broken down by enzymes in your saliva and digestive system so although starch doesn't taste particularly sweet it has a high impact on blood sugar. You may not have noticed any other pattern because starch can be so ubiquitous in modern diets.

[Islay9]

I’m on 450mg Pregabalin (I still have RLS but sleep has been slightly better, I think) I take it all at bedtime. I have lightly discussed taken more if needed. I’ve had to let go of my worry about all these drugs and what they’re doing to me because I NEED to sleep. It’s awful isnt it.

[amrob123 in reply to Islay9]

Surely there's something better out there for you if 450mg pregabalin isn't stopping your RLS/helping your sleep considerably.

[Islay9 in reply to amrob123]

Quite! I’m just working through all the things 🤷‍♀️

[hayzl in reply to Islay9]

I so get that. Like just forcing yourself not to worry because there are no better options. It’s not fun! I’m glad you’ve gotten relief at 450 mg. I’ve gotten a lot of raised eyebrows from other doctors and nurses when they see my 375 mg dose as it is and I don’t like those ensuing conversations where they try to suss out if I have a “problem.” (Like yes I do but my problem is that I need to sleep while my legs want to run a marathon!)

[Islay9 in reply to hayzl]

I’m lucky that my GP doesn’t have a lot of knowledge on it so has let me take the lead with suggestions. Also don’t see anyone as it’s all phone appointments nowadays and pharmacy drops off meds at house.

[SueJohnson in reply to hayzl]

My laugh for the day although it's no laughing matter for you. "while my legs want to run a marathon!" 🤣🤣🤣