I’ve just been reading some posts . I can’t believe the affect RLS has on so many people’s lives . It is just so so sad 😞. I started Pregabalin nearly 3 weeks ago . I know the dose of 25 mg is far too low but have requested a higher dose from my gp . I rang my pharmacy today and they have sent me another supply for a month but only for 25 mg .
I take paroxetine 45 mg and do need this as I tried reducing it a few weeks ago and felt awful . I was also taking a hormone anti cancer drug - letrozole. I’ve changed from letrozole to exemestane as I was suffering awful debilitating hot sweats every forty minutes on average day and night.
The exemestane makes me ache from head to foot but the sweats feel a little better but I know it’s early days . Something I found interesting - when I told my consultant That my sweats had improved she asked if I’d started any new medication. I told her about Pregabalin and she said this could be helping with them . She said she prescribes it to patients who are unable to take HRT .
I am going for a much needed break in Devon on Friday for a week with out two household bubbles . My daughter, son in law , 6 year old grandson and my mother and father in law , my husband and our two labradors - it’s a static home with separate bedrooms but I just don’t know how I’m going to cope. I kick so much in the night that I too hurt my hips and knees . If you move in the caravan at all everyone knows about it but we have been going there years and I really want to go . My husband cares for me and we really need this break and time with the family . I know I could go and sit outside as a last resort .
I can’t believe RLS is so bad . Last night I dreaded the feeling so sat up and read till 5.30 as I just couldn’t face the crawling feeling . Sometimes I have found if I lie propped up in two pillows rather than lit flat it can help a little . I’m totally exhausted today and really want to be able to enjoy our family break together . I have other health problems too .
Two positive points are that my yearly mammogram was clear ( 3 years since breast cancer - 21 years since bowel cancer ) so this has lifted my spirits. Also I have heard from the specialists in Manchester who after lots of tests in January ( pre - Covid) have advised they think it is possible to mend my fistulas from my vowel which was damaged in surgery nearly 4 years ago . In this respect I look forward to the prospect of a better quality of life .
I dread nighttime. I really do . I sometimes get it in the day and have recently suffered awful augmentation . Got those of you who feel you can’t cope - you must - don’t let this awful awful syndrome get you .
I love reading manerva’s posts . They really help me . Thank you Manreva and everyone else too . ❤️
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Esme2007
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You're quite right that 25mg pregabalin is probably insufficient for RLS. It can be built up until you achieve an effective dose. It also takes 3 - 4 weeks to start working so what you're currently taking may not be fully effective yet anyway.
I suggest you contact your GP and refer her to the NICE prescribing information on pregabalin for RLS which you can find here
Unfortunately, you also mention augmentation and if you're suffering this then the pregabalin may not be particularly effective anyway.
However, you make no mention of taking a dopamine agonist (DA) for RLS. Augmentation is only caused by taking a DA, so if you're not taking one you can't be suffering augmentation. Some people do have daytime symptoms, this isn't augmentation.
In that case there's nothing to prevent the pregabalin working - if the dose is high enough.
I imagine it may be difficult in a static. It may help if there's a living room area that's unoccupied at night.
With RLS, I always alert people to the recommendation that if you don't fall asleep within 15 minutes of going to bed, then it's better to get up. Lying in bed suffering increases anxiety levels and creates anticipatory anxiety about the next time you go to bed. This can lead to a dread of going to bed, a kind of phobia and the anxiety causes further sleep problems.
I always found that getting up would relieve my symptoms especially if I did something distracting. You can try bed again after a while, but if again you can't get to sleep, get up again.
I appreciate you may be up all night. I hope it doesn't come to that. but even so, if you're not sleeping any way, it psychologically less damaging.
I would really press the GO for more pregabalin, I just asdume they're not aware of the prescribing information for RLS.
Co codamol is not a DA and doesn't cause augmentation.
The only DAs used for RLS are pramipexole, ropinirole or rotigotine.
In some respects I find it easier to have phone consultations.
Firstly you're in your own territory, not their's
Secondly, I attended a seminar on stress management some years ago and I always remember a strategy I learned there. This is, when making a phone call in which you need to be assertive, (which helps when dealing with some Drs), either stand up even on a chair, or imagine them sat on a toilet with underwear around ankles.
Ha ha ! Good tip ! I think I meant that during Covid I’ve only managed to talk to other doctors - they aren’t my usual Gp . But I’m definitely going to refer them to that link . Thank you 😊
No, Esme, cocodamol is not a DA (dopamine agonist), it is a painkiller. Only ropinirole (brand name Requip), pramipexole (Mirapex or Sifrol) and rotigotine (Neupro) are. I hope that helps and that you're not taking either of these.
Thank you - I love Devon . We go to Brixham every year . My in laws live there in the summer . Have been going for 34 years now . I had a bad night last night - it’s just such an awful feeling isn’t it ? Thank you for taking the time to reply .☺️
Lots of good advice so I'll just add my little bit (I'm always late to the party!).
I had a lot of grief from my GP getting my correct dose of Pregabalin dispensed. I am treated like a junkie LOL The sleep clinic said to start at 50mg but it wasn't enough. They finally seem to realise that I am not taking this recreationally, especially with the side effects.
It takes a couple of weeks to build up so try to experiment with doses as you may find you need more some nights than others. This works for me. I have a mix of 50mg and 25mg so that I can amend my dose each night. Nights without trigger foods and drinks (never know what they are!) are much better so I need less. I usually have 125 - 150mg but some nights it can be just 100mg, others 200mg. I doubt very much 25mg will be enough. On a terrible night I add codeine as it does help alongside the Pregabalin. Everyone is different so this approach may not work for you but it's worth experimenting.
Thank you - that’s very useful. Last night was a bad night again . Codeine was perfect for me sleep wise but it complicated my tummy problems . When I come back from my break in Devon I will contact my gp again . Thanks for your support!
I too have just been prescribed 25mg of pregabalin and know it won't be a high enough dose to be effective. I phoned GP in desperation this morning after weeks of not sleeping and asked for this drug. I am getting so depressed because if I can't look forward to comfortable evenings and nights what is there left for me after losing my husband last year? I was just getting back to a semblance of normality when the cruelty of rls kicked in worse than ever. Ropjnirole and Gabapentin had ceased being effective and Ropjnirole particularly made me sick. Is it likely 25mg of Pregabalin will help in time. I'm in terrible discomfort now six hours after taking it. Can anyone help me please?
I have been taking pregabalin for about 3 months now . I started on 25 mg and it didn’t really help. I’ve since contacted my gp and I take 150 mg at around 9 pm . It has helped me a great deal . I do get RLS some nights but it was nothing like I was experiencing before pregabalin. I will fall asleep eventually and get a good 6 hours . Of course this is what my gp has prescribed me and everyone is different so you obviously must be prescribed your correct dosage by your own gp . Have a chat with him / her and request your dosage to be higher. I hope this helps you a little .
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