Increase in Pregabalin - RSL

[VJ29]

Hi

Just seeking a bit of advice I posted 10 months ago in respect of my Pregabalin dose and at that time increased to 300mg along with co-codamol. It’s been great during the day but still breakthrough periods with my RSL every night. I’ve now been referred to a neurologist which looks like appointment maybe being in July but in the meantime I was desperate for sleep so my gp has given me some sleeping pills to help me get at least a full nights sleep. These have worked to a point rsl wakes me and I have got in arm a couple of times as well which is new but I take pregabalin and co-Codamol and the sleeping tablet in my system seem to make me go back to sleep more or less straight away. She gave me 14 tablets but she said I need to double up on pregabalin to get more of this in my system at the same time as she thinks I’m on a tiny dose and although sleeping tablets short term she said taking 600mg of pregabalin should help long term. Could I have your thoughts please.

Thanks so much

[martino]

I sometimes take 600mg but usually 450mg. I was still getting breakthrough pain and was waking early. My doc gave me 10mg of nortriptyline and that has helped. It is a tricyclic anti depressant so if you do try it be careful as it could make RLS worse

[VJ29 in reply to martino]

Hi Martino

Thanks so much for your reply, it’s been mentioned on here that 300mg is the top dose that should be taken I’m just wondering how long you have been on pregabalin and why do you sometimes take 450 or 600 what is your prescribed dose. Also does the antidepressant stop the breakthrough.

Thank you

Val

[martino in reply to VJ29]

I suffer from Small Fibre Neuropathy as well as RLS. In all I use a 2mg Neupro patch, take 450mg of Pregabelin, take 200mg of Tramulief and 10mg of Nortriptyline. When I get up in the morning I take 150 of Pregabalin but sometimes 300 depending on the pain level. I have been on Pregabalin for about 6 months and have taken 300 only two or three times. The Nortriptyline was added for further pain relief and to help me sleep. It is helping but my legs are becoming more unsettled.

[involuntarydancer in reply to VJ29]

I'm pretty sure my consultant also suggested that 300mg was the upper limit for pregabalin.

[Hidden]

My sleep specialist won't go any higher than 300mg with the pregabalin. He maintains that's the "maximum efficacy" dose. I haven't heard/read of a higher dose being used for RLS/ periodic limb movement disorder. Best of luck with it.

[VJ29 in reply to Hidden]

Thank you so much everyone this has made up my mind to stick with the 300mg the 600mg isn’t making any difference to my rsl break throughs during the night. I’ve had to ask for sleeping tablets and these help me get a good nights sleep but obviously the gp was reluctant to prescribe so been given 14. I’m still waiting for Nuero appointment now July. Gp had written to ask if another drug can be mixed with the pregabalin on an evening. Any suggestions in respect of sleeping tablets and additional meds. Thank you so much.

[Hidden in reply to VJ29]

I have taken either temazepam 20mg OR clonazepam 0.75mg with pregabalin (300mg). The temazepam is more of a straightforward sleeping tablet (sedative) while clonazepam has some anti-seizure properties combined with sedative properties)

(My 3 year old is prescribed clonazepam for his periodic limb movement disorder disorder as it has been used in pediatric populations for several decades).

[VJ29 in reply to Hidden]

Thank for that information it's so hard just what to do I'm waiting for the GP to get an answer now from the neurologist in respect of an additional drug, let's see what comes of that! fingers crossed.

[Hidden in reply to VJ29]

Hi again VJ29,

Since my last reply, I received some new medical advice. See below. The advice was given based on my particular circumstances (I alternate between pregabalin and pramipexole but usually take one (of those) for a prolonged period and supplement with melatonin or sleeping pills).

"Clonazepam is a poor choice as a sleeping pill since it has over a 40 hour half-life so it quickly adds to daytime sedation. There are many much shorter acting sleeping pills (with half-lives of 2-10 hours) that will work as well but not increase the risk of daytime sedation".

[VJ29 in reply to Hidden]

Thanks for your reply Amrob that’s sounds interesting the neurologist won’t recommend anything else for me till I see him in July. Thanks for the advice on sleeping pills will mention that to the doctor. Hope your meds keep working for you.

[Shaft1952 in reply to VJ29]

Does your nurologist not let you contact his or her secretary, who then tells consultant, who then writes to GP with any changes

I am very lucky that is what I do. Hope you get sorted soon.

[VJ29 in reply to Shaft1952]

Thanks for the suggestion I haven't seen the nurologist as yet, it's always been the GP who has prescribed but as I now have the referral I hope this can happen in the future

[Shaft1952]

My consultant says she doesn't like to go above 300mgs of pregabalin, I am also on pramipexole & codeine at night. Hope you get sorted soon.

[funkyday]

I’m in Canada and I am so lucky to have a wonderful neurologist although it took about 6 months to talk to him. I was on pramipexole from my gp but had augmentation so he switched me to 150 mg pregabalin and 1 tablet of tramadol a day. It has saved my life as I find Rls unliveable without meds. I can’t even imagine a doctor that won’t listen to you. It is the height of arrogance.