RLS - Q&A

[careerSquirrel]

Hi RLS survivors

I am continuing my Pregabalin journey and wanted to check in with this community to ask out loud various questions circling around my head.

The good news is that Pregabalin is making a difference. I get some relief from jumpy legs at night even on a low dose (75mg)

What I am experiencing though is insomnia. I usually take Pregabalin around 21.30 and head to bed for 23.00. Get to sleep fine but around 03.00 I am wide awake and my legs are mildly trembling. I’ve taken codeine which sends me back to sleep but I feel groggy and exhausted in the morning, unable to get going at all.

I am still taking iron tablets at night

what am I doing wrong??

Feel like I’m winning in many respects but the insomnia is awful. I’m also on HRT, have magnesium cream administered at night and no caffeine after 5pm

If anyone can relate, please respond back and maybe we can find a solution together

[Joolsg]

It sounds like it is RLS waking you at 3am. The fact codeine gets you back to sleep comfirms this.Pregabalin does cause daytime grogginess/dizziness, but it tends to settle after 3 months. How long have you been taking it?

You may need to add 50/75mg Pregabalin just before you fall asleep, and that may stop the RLS waking you at 3 am.

[careerSquirrel in reply to Joolsg]

Thanks Joolsg for your reply.

I’ve been taking Pregabalin for around 2 weeks at 75mg. GP was horrified at this and seems to think I will end up a drug addict. He took some convincing (but also refused to consider iron infusion)

I think I’ve read on here that 150mg is the optimal dosage????

I don’t feel like I have jumpy legs when I wake but you could be right. I don’t want to take codeine and I want to feel I can get up, go to work etc but I’m currently so exhausted.

No side effects on Pregabalin so far

[Joolsg in reply to careerSquirrel]

That isn't surprising! RLS isn't taught at ANY stage during medical training. Even neurologists aren't taught the basics.150mg-200mg is the average dose of pregabalin.

As you've only been on it for 2 weeks, that explains the grogginess. It will settle.

RLS can present itself as the need to get up and move without the 'jumpy legs' sensations. I do think adding 75mg just before sleep would settle the 3 am waking or you could continue to take codeine when you wake. Opioids are very effective.

I hope you can persuade your GP that 150mg is an average dose!

RLS UK website and the Mayo Clinic Algorithm set out the meds/average doses.

[careerSquirrel in reply to Joolsg]

Thanks so much. I will take your advice and continue to keep the community updated on my journey. You are so right Joolsg around movement. I’ve always thought I need to have that jumpy or crawling feeling in my legs but yes, it’s a compulsion to move!!

[67Waterman]

I went through EXACTLY the same as you but I was taking 450mg Pregabalin.

In the end, I and Professor Walker at Queen Square, concluded that Pregabalin just was not working, and he has put me on (still) 150mg Pregabalin, BUT with the addition of 5mg of Oxycodone (an opioid). Most nights this actually does work with no RLS and no waking at 2.00pm etc in the morning.

However, if I get sick or eat too many trigger foods, then this is not sufficient and I end up having to take either Co-codamol to get me back or sleep or 0.125mg Ropinirole to stop the RLS.

Most of all of this seems to be trial and error - there is no magic cure ...

[careerSquirrel in reply to 67Waterman]

Thank you for your reply. This is really interesting.

Can you tell me more about your trigger foods?

I end up taking codeine most nights when I wake up and, despite no jumpy legs, I always have to walk around even for ten minutes.

I go back to sleep fairly easily but I’m so tired in the morning and feel so lethargic. Did you get your iron levels tested?

[67Waterman in reply to careerSquirrel]

Yes .. iron tested but all good, although I do take iron supplements. Food triggers can be anything. Mostly processesd foods, any Asian / oriental foods ... but can also be steak or salmon. There seems to be no reason sometimes.

I think sometimes we all spend too much time trying to work out "why" when really RLS can and is just a thing that has a mind of its own ....

[careerSquirrel in reply to 67Waterman]

Thanks. Really interesting. Yes, it’s a very confusing condition!!

I feel the legs are ok at night now but the fractured sleep is killing me.

[Munroist]

I found 75mg pregabalin "didn't touch the sides" and even 150 mg was only moderately effective. I ended up on 300mg a day for neuropathic pain/discomfort and that was OK although if you can get away with less then absolutely definitely do so. I never felt any signs of addiction whatsoever in fact I couldn't wait to come off it, but people can abuse it much as they do alcohol or any other substance so your GP is being quite cautious .. not a bad thing.

Also it's pretty easy to adjust down again so you can experiment without worrying too much but obviously stay within the maximum doses and as low as you can manage while getting the benefit.

[careerSquirrel in reply to Munroist]

Also: do you take low dose opioids with Pregabalin? If so, do you take them together or separately? I’m taking them when I wake up but I feel horrendously groggy until the afternoon.

Trying to stick to 15mg of codeine

[Munroist in reply to careerSquirrel]

I didn't take any opioids with pregabalin

[careerSquirrel]

Thanks Munroist I was thinking about increasing the dose but GP extremely nervous about this.

Did you experience any side effects with increasing the dose and did it help you sleep?

Legs are less jumpy but sleep is still a problem. Waking between 2am - 3am every night despite taking Pregabalin before bedtime.

[Munroist in reply to careerSquirrel]

I had some mild side effects, a slight cognitive fog, occasionally a stutter while initiating a conversation or not being able to find the right word, and a slight disinhibition e.g. saying things for a laugh I probably should have thought twice about - basically quite similar to the effect of a couple of alcoholic drinks in many ways. It didn't seem to do much for my RLS to be honest, I was still being woken up although at the time I wasn't aware of RLS so I wasn't really looking for that. I think I put a couple of pounds on but I suspect that was mainly the ""don't care" attitude from the disinhibition. I came off it in the end because it served its purpose with the neuropathic stuff which I learned to live with and I definitely found my head clearer afterwards. However if it helped my sleep and my RLS got worse than it is now I'd have no hesitation trying again.

[Moonwalker1967]

Strange, I wake up every night at 3.00 as well. Why 3.00 I wonder 🤔

[careerSquirrel in reply to Moonwalker1967]

Yes this is really curious - I wonder if regular contributors on here have a theory?

Joolsg

Madlegs1

[careerSquirrel in reply to careerSquirrel]

SueJohnson

[Joolsg in reply to careerSquirrel]

I have no explanation, but I always used to wake around 3am when my RLS and sleep were uncontrolled.The dopamine cycle may be responsible. Dopamine is highest at 6/7 am and then lowest around 10 pm/11 pm to enable sleep. If more research were done on RLS, we would find the answer to the 3 am 'witching hour'.

Another possibility for you to try is medical cannabis.

Before I had such miraculous results on Buprenorphine, I would waken at 3 and then again at 5 with RLS. I was taking 25mg Oxycontin and 150 mg pregabalin. I still had very severe RLS and the sleep disruption was terrible.

Medical cannabis was really good at sending me into a deep sleep. I used cannabis oil with 20% THC, 0.3ml an hour before bed. The 'high' would happen 2 hours after taking the oil,but most times, I would be asleep by then.

If disrupted sleep continues for more than a month, you could add cannabis OR consider a switch to a low dose opioid like Buprenorphine. Its long half life covers RLS for day and night.

[Whippetmama]

I used to wake at 3 am, too. It took me a while to find what works for me. I now take 450 mg of pregabalin (150 in the morning and 300 before bed) and 200 mg of extended release tramadol. I wish that I could get by on less of each, and I have tried reducing but whenever I do, the rls comes roaring back. Cannabis is a godsend to get me to sleep and it helps calm my legs but the effects don't last long. I am extremely drug tolerant but I have been on this dose for over a year without ever thinking I need to increase the doses. I have had rls all my life and I am 76 years old. I could write a book about everything I tried, but this combo actually works gor me.