What am I doing wrong

[soupersuzy]

Have gradually been increasing Pregabalin. Last night took 100mg at 9.30pm and went to bed about 11.30. Had horrendous RLS so no sleep until around 4.30am, then it suddenly eased and I was able to sleep (with a couple of loo interruptions) until 10.30am. I'm now retired so I can do that, and I am grateful for 6 hours sleep, but why that timing? Should I take the Pregabalin earlier?

[SueJohnson]

You might move up the pregabalin and take it 1 hour before bedtime instead of 2 hours. Also, keep increasing by .25 mg every couple of days. 100 mg is a low dose. Most people need 200 to 300 mg.

[soupersuzy in reply to SueJohnson]

Thanks for your help Sue I think you're right, I need to increase the dose. But if I took it an hour later would that not make my sleep an hour later?

[SueJohnson in reply to soupersuzy]

Probably not. The usual recommendation is an hour or 2 before bedtime. I take my gabapentin an hour before bed. In any case you can try and see.

[soupersuzy in reply to SueJohnson]

I'll give it a try, thank you.

[Madlegs1]

It sounds very like a triggered bout of rls.Do you keep an intake diary for food, drink or medication triggers?

I got an almighty horrible dose of restlessness last night, out of the blue. Can only blame sausages, even though I had checked carefully for msg.

If any case of rls occurs intermittently, then I would be looking at some sort of trigger.

[soupersuzy in reply to Madlegs1]

Have racked my brain for years but cannot identify anything being a trigger, and I do suffer from RLS every night to some degree. I do take medication that I've been told is not good for RLS but I have to take it, end of story. Only been on Pregabalin for a couple of weeks and most nights it helps but have had to increase it. Never sure of the right time to take it and can't understand why I'm unable to sleep for most of the night but then can for half the morning. Thank you for your advice

[Madlegs1 in reply to soupersuzy]

What is that medication? There may be an alternative.Good luck.

[soupersuzy in reply to Madlegs1]

I take atorvastatin and Clopidogrel which I think aggravate RLS.

[Madlegs1 in reply to soupersuzy]

Yes-- both of those are triggers for RLS.Could you ask your doctor or pharmacist about alternatives, that aren't triggers?

[soupersuzy in reply to Madlegs1]

Don't think there's any alternative to the statin, they all seem to do the same, but don't know about Clopidogrel, will speak to my doctor.

[Madlegs1 in reply to soupersuzy]

bhf.org.uk/informationsuppo...

Could try some of these ,if appropriate!

[soupersuzy in reply to Madlegs1]

Thx Madlegs1 will have a look.

[SueJohnson in reply to soupersuzy]

Dipyridamole is a blood thinner which has actually helped a number of people with RLS. See movementdisorders.onlinelib...

[Joolsg in reply to soupersuzy]

RLS follows the dopamine cycle, Dopamine drops in the late evening and starts to increase around 5 am. So most RLS sufferers can sleep from 6 am until noon. As Sue has suggested 100mg is a low dose so you have room to increase. You could split the dose to make it last longer so maybe 100mg an hour or 2 before bed and 50-100mg just before sleep.

[soupersuzy in reply to Joolsg]

Thanks for that Jolson I didn't know I could split the dose, will try it and hopefully it will work.

[soupersuzy in reply to soupersuzy]

Sorry, sure I typed Joolsg.

[Joolsg in reply to soupersuzy]

I notice from previous posts and replies that you were on lots of medications that worsen RLS like statins and PPI gastric meds. Did you manage to substitute other meds? Sadly, RLS and PLMD will always be there if you're on meds that trigger/worsen it.

The pregabalin will just be a sticking plaster.

[soupersuzy in reply to Joolsg]

Yes I am still on those meds with the exception of Spironolactone but my doctor says I need to take them. It's so difficult to know what to do for the best.

[Joolsg in reply to soupersuzy]

Heart disease, high blood pressure and cholesterol and acid stomach are difficult to control. I do sympathise.Perhaps you can see if there are other ways of controlling the cause.

I always suggest a really good probiotic like Symprove or VSL to deal with acid stomach and reflux. Cholesterol can sometimes be sorted with diet.

I know Shumbah was able to stop her blood pressure meds when she started Buprenorphine as it completely stopped her RLS. She could then sleep.

I can only suggest you do extensive research to find alternative ways, if possible, to control the heart issues, HBP, Cholesterol etc.

Don't just rely on your GP.

Consider asking for a referral to a neurologist.

[soupersuzy in reply to Joolsg]

Thx Joolsg for all that info. I have heard of Symprove before so will definitely give that a try. If I don't take my PPI for a couple of days I get heartburn, but that may well help. Had a TIA last year so am very conscious of keeping my BP on track. It was only as a result of that, that they gave me a 5day halter and the heart problem was discovered. I now have a pacemaker!! Who knew!!As regards a neurologist, saw one, then another, when I first went to my GP about RLS many years ago. Useless, not interested. I can understand to a certain extent when they are dealing with people with awful things like MS and MND, and they just don't know anything about RLS, wrote a prescription for Clonazepam and that was that.

However I will do some more research on the things you've mentioned, and thanks again.

[SueJohnson in reply to Joolsg]

Interestingly my husband lowered his cholesterol from 221 to 131 by going on a vegan diet.

[Munroist in reply to soupersuzy]

Classic RLS follows your circadian rhythm and which drives your dopamine cycle. I don’t take any medication and my RLS starts up reliably after 11pm and is normally disappearing by 4pm. Most times it waits for me to go to sleep before waking me up an hour later. As above I suspect the main change you need to make with pregabalin is to increase the dose, maybe in 100mg steps or 50mg if you are worried about possible side effects. 300mg is not a massive dose although I would think twice about exceeding it. I didn’t find the timing of pregabalin to be particularly important, I took it every 8 or 12 hours and didn’t really notice a significant change in effect between doses. However one dose after 8pm seems to be sensible.

[soupersuzy in reply to Munroist]

Thanks Munroist I think I will need to increase my dose but trying to do it very slowly. Hoping to be able to stop at 150mg but worry it will not stay there. I'm already getting side effects and don't want those to get worse.

[rchobby in reply to Madlegs1]

Good morning Madlegs, just a note from our experience, and well aware that triggers are different with everybody, sausages are a definite no no!! They contain phosphates as do most prepared meats and cause untold RLS havoc if my husband eats them. We learnt this through this forum and are eternally grateful for the advice.

[LFIT]

I have no idea if it helps however I’m on the same journey . I’m finding it helps me presently to go to bed a little later than usual say 1130 , taking the drug about an hour before hand . This drug is a slow build - it takes weeks . At the moment I have better nights and bad nights however it’s improving slowly - my neurologist recommends 3-4 week intervals before moving up by 25 mg a go. I’m 2 weeks in . Also what works for me is if I wake , I don’t mentally resist , I pretty much immediately get up for a 5/7 min walk which buys the next 2-3 hrs of calm . And on we go!

[SueJohnson in reply to LFIT]

As I have mentioned before you do not need to wait 3 to 4 week intervals. The Mayo Clinic Updated Algorithm on RLS says "Treatment should commence at 300 mg of gabapentin . . . and be increased every few days as needed." It does take 3 weeks from when you first start gabapentin to be fully effective. Perhaps that is what is confusing your doctor. If necessary print out that section from the Mayo article to show him/her.

[LFIT in reply to SueJohnson]

Yes that is my understanding also - one doesn’t have to wait , however why rush to take more of any drug if the existing dose might be effective in a 3-4 wk timeframe? I’m biding my time as I want to take as little of this stuff as I can get away with !

[SueJohnson in reply to LFIT]

So you haven't passed the 3 to 4 week time frame yet?

[LFIT in reply to SueJohnson]

Nope , just 2 weeks in (after taking a 7week drug free holiday post a difficult ropinirole experience) . The upside of waiting has been I got closer to my baseline which seemed to plateau at week 6 and also what my real physical and mental energy level were ( which was good!). I can now see what Pregabalin is doing or not doing without historical distortions and I’m taking my time. Clearly my RlS is not as bad as some folk on this forum so I have the choice for now at least

[SueJohnson in reply to LFIT]

Ahh - OK. Understood.

[soupersuzy in reply to LFIT]

Hi LFIT thanks for your support. I'm increasing by 25mg and am now on 125mg, started at 50mg. However I'm finding that I need to increase every 3-4 days now and the RLS is horrendous when I get to that stage. Just hoping it won't get up to more than 150mg to be able to have mostly good nights.

[wantokporo]

An hour is good on an empty stomach. You need 3 if you have eaten.

[soupersuzy in reply to wantokporo]

Usually have eaten by about 8pm and take pregabalin at 10pm so a bit in between. Think I'll try eating a bit earlier and see if it helps. Thanks.

[Amrob]

I second the comments about increasing the dose. But doing it slowly eg in 25mg increments. You don't want to be taking more than you need to.

[soupersuzy in reply to Amrob]

Yeah I'm increasing at 25mg, slowly as poss, but finding the need every 3-4 days at the moment. Just hoping it won't get too high before I get regular ok nights.

[Pam34]

As you know I’m on 150mg. I generally take mine about 7pm and go to bed between 10-11pm. I’ve played with timing over the years and find this is the one that works best for me. Who knows why?!!!

[LFIT in reply to Pam34]

Do you avoid any tiredness side fx later in the day by taking it around 7 pm . I haven’t gone that early yet but might try it out!

[Pam34 in reply to LFIT]

I find tiredness a price I’m prepared to pay for having calm legs. I was constantly tired before I started taking Pregabalin as I wasn’t sleeping (or only 1-2 hours a night for maybe 10 years - it surprises me now how I kept going!). I can’t remember what it feels like not to be tired but this is so much better and it does improve or maybe you just forget what it’s like not to feel tired. But the main thing - my legs are quiet 😊

[LFIT in reply to Pam34]

Interestingly there is some research to suggest that RLS sufferers can get by on less sleep from something I’ve read a long time ago . This is also consistent with my experience also. My rls is not as severe as yours clearly however I have been amazed on how good I can still feel in the morning with say 4-5 hrs broken sleep. You are right about getting used to something and it’s a real watch out actually. Ropinirole side fx really affected my mood and energy. I didn’t realise how much till I stopped taking it. Shockingly the upside of reducing the side fx was greater than the downside of return/ worsening of RLS …the scary thing is I didn’t actually realise that till I fully stopped the drug and was still improving up to 6 weeks afterwards!

[soupersuzy in reply to Pam34]

Yes I remember you telling me that Pam, I'm at 125mg at the moment and hoping to be able to stick at that too. Not tried taking it so early but will give it a go. As you say "who knows why" some things work for some but not others!!

[1kma]

Stop eating sugar

No fruit

No cheese

No bread

No sweetener

For one month