Not posted for a while as been manically busy & relatively RL free BUT it has raised its ugly legs in the last few days & need some advice re Pregabalin. After wrestling with my hospital specialist regarding what medication to prescribe,the arrangement is to take 1×25mg of Pregabalin @night when I am having a flare up which has left me without sleep for several days.
This is done ad hoc & totally in my control as to when or if I have any which I succumbed to last night & did manage some sleep but feel very heavy headed & hung over this morning.
Am I handling this correctly as I have such an aversion to taking these heavy duty drugs it really stresses me out if have to take them every day just to get some sleep?
Any comments would be helpful I'm sure..
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SwimLyn
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The experts on here will advise you well and better than me however I will just say that 1x25mg won't touch it! I'm taking Pregabalin daily and am on 250mg in the evening. I'm actually going to increase that slightly as it's starting to not work. It's been good up to now but I do worry about the future
You should take it every day and 25 mg is an extremely low dose. By taking it only when needed your body isn't able to get used to it. Taking it every day you might find the side effects go away or lessen.
If not you could try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The equivalent dose would be 150 mg. You can get it in tablets so you can cut one of the 100 mg in 2 with a pill cutter to get the 150 mg dose. If you can't get it in tablet form take 100 mg and if this doesn't work you can take 200 mg. You can switch directly. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
Your RLS seems to be getting worse, Have you changed anything? Any new medicines or OTC supplements, food or even daily routine. I know I have given you this list before but it has been awhile: Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
I knew I would get some great advice on here & I will start taking the Pregabalin nightly from now on even though it's only a small dose but will let you know in a few weeks what the results are & if makes any difference..
Seriously? I knew RLS wasn't taught at any stage in medical training, but that is the most stupid advice from a hospital doctor yet.Please send a complaint letter to the hospital, to the BMA and PALS.
Refer them to RLS-UK website, 'medications' and suggest they actually research and learn.
Pregabalin is totally useless if taken ad hoc. I assumed doctors knew how medications work, but clearly not.
Pregabalin takes 3 weeks at FULL dose to have any effect on RLS.
For someone with intermittent RLS, like you, a better medication would be 30 mg of codeine or 50 mg tramadol, taken when needed.
To be fair Joolsg she has tried to get me to take other meds over the last few years (Pramipexole for instance) & has referred me for all the ferritin tests every 3 months but it is me that has thwarted her efforts as so frightened of becoming 'addicted' to any if the heavy duty opiods that seem to be all that's prescribed for RL.I try everything during the flareups in the hope of alleviating ((cold foot bath,pulse machine,magnesium cream& sprays etc) & they do help usually but really bad consecutive nights when am soooo tired is when I turn to Pregabalin .
In future I will heed Sue's advice & take it nightly & report back re any adverse side effects or hopefully more positive ones.
And low dose opioids, properly prescribed, are good for RLS and don't lead to addiction or increasing doses (e.g. Joolsg had been on the same dose of buprenorphine for 3 years now):
Any medication which tries to mess with dopamine levels is doomed to fail because the dopamine receptors will down regulate themselves so that a bigger dose of dopamine is needed to get the same response, this is at the core of drug addiction.
Definitely do not take pregabalin on an as needs basis. A consistent dose is best with psychotropic medications. I'd be surprised if you get ongoing relief at 25mg pregabalin. And I second what Jools says, a low dose opioid would be best for intermittent RLS.
It's a pity you haven't been able to ascertain why you get it sometimes and not others. This might mean the difference in having to take medication or not.
Did you see the recent post about chinese suction cups? With your aversion to meds and only occassional RLS, might be worth a try.... (I'm hoping more people try this in order to find out if it's worth a shot 😅) Have you tried a TENS device?
No I'm afraid I haven't seen anything about Chinese suction cups - what are they ?Yes I use a Tens machine a lot & find it very helpful to distract RL but unfortunately doesn't prevent it occurring in the first place !
Yes, please do try it. It doesn't do the whole thing for me but works for breakthrough. I tried lowering my dose of methadone and just using the cups and it would work for a couple hours but not all night.
Pregabalin (or the very similar gabapentin) is the best balance of effectiveness, side effects and availability. It can work well allowing people to sleep with minimal side effects and is normally not too difficult to get a doctor to prescribe. Other medications can help but are worse compromises, for example dopamine agonists are usually very effective initially but can cause compulsive behaviour disorders such as gambling, or shopping addiction and in most cases will require steadily higher doses to remain effective until they cause severe side effects such as RLS in the day and in other parts of the body, e.g. arms torso etc. Withdrawal from dopamine agonists is also a very difficult and painful experience often involving no sleep and depression so the drug is best avoided. Some opioids such as buprenorphine or methadone can be very effective but do have some side effects, usually manageable, such as constipation, sweats or mini withdrawal if you don't get the dose right but they are very difficult to obtain as most doctors are worried about opioid addiction which is not normally a problem with these particular low dose versions. If pregabalin doesn't work then opioids are the next best option for medication. Of course there are many other possibilities such as managing diet, exercise and supplementation with iron and magnesium which can help some people before having to resort to medication - see any of Sue Johnson's comprehensive and informative posts for a full list. One of the big problems with RLS is that people react very differently to treatment, what works for some doesn't for others.
What dosage do most people on Pregabalin find the most effective as the 25 mg I am on seems to be the highlighted point from my post ?I can off course double up if need be but left to make own decision by drs....
As most people have said 25mg pregabalin a day is quite low and I suspect won’t help your RLS. From personal experience and reading other posts, 300mg seems more typical although there will most likely be a higher chance of noticeable side effects. I took pregabalin primarily for neuropathic pain and found that 150 mg a day was only just starting to work and 300 did the job a lot better. However, I didn’t like the very slight cognitive fog or disinhibited feeling and it also didn’t seem to help my restless legs, although at the time that wasn’t a major problem, so I decided to come off it which was also pretty easy. I now have worse RLS and wake somewhere between two and five times night and can be awake for 2 to 3 hours worst case but I still prefer this to taking pregabalin. I think it’s worth building the dose up from a low point so you can ideally find a balance where the benefits are worth any side effects (you may be lucky and have none!) so I’m not suggesting going straight to 300. I started at 150mg a day and went up to 300 from there without problems. I came off it in smaller steps and took several weeks between reductions because I wanted to exactly what difference it made and didn’t want to go too fast and have to go back up again.
Hi,I have been takinfg pregabalin for about 20 months now. Initially I was on 75 mg, but I now take 300 mg as I now have arthritic related back pain as well as rls.
My experience is that it has definiteky heloed with rls and I second what most have said on here and that is that you need to take pregabalin in one dose, daily.
It does cause some drowsiness and a somewhat 'spaced out feeling' in the first few weeks, but that DOES go away.
My body has developed what is known as therapeutic tolerance, which means that I will have some uncomfortable sypmtoms if I suddenly stopped taking it. (I did run out 2 days ago and had a very nasty headache with anxiety, but I got another script today.)
There have been several rather misleading articles in so newspapers saying that pregsbalin is addictive and that people have died from taking it. On further reading, I discovered that all the reported deaths were overdoses - of mixed off-label prescription drugs, and street drugs.
I was told by a psychiatrist once that 'addiction is chasing a high'.
Pregabalin definitely does not do that !
Even if you end up with a low dose opioid, please know that while you may develop a therapeutic tolerance, that is NOT addiction.
The other worry I here about pregabalin is weight gain and I do think that it may have that effect. I ended up changing my diet to 'Mediterranean' based as my cholesterol was quite high and I have lost about 8 kg ( 17. 6 lb) in 5 months and a bit more, I think - plus I do swimming and some pilates (for my back - but maybe helps the rls).
I also take 100- 200 mcg of clonidine at night, it is a blood pressure lowering medication which has a sedating effect - but doesn't make rls worse, nor is it habit forming !( yay !)
My experience with pregabalin supports most of the replies you have had to your recent post ie not an instantaneous relief type drug and totally ineffective at such a low dose even after weeks of regular nightly use.
i used a level of 400mg per day over a long period without pregabalin doing anything for my RLS. It then takes many weeks/months to come off the drug without withdrawal symptoms.
Like you I was very nervous about use of opioids but after in vain using codeine my neurologist and GP prescribed an extremely low dose (less than 0.4mg/day) of buprenorphine (as a patch) and this has been a wonderful relief for me as I now sleep well for 7/8 hours a night.
If you go to next step please make sure you do not get taken in by any of the dopamine agonist medications such as pramipexole or rotigotine etc. They landed me with augmentation and it has taken a lot of advice from people on this forum to sort me out.
Am I correct that with a name like swimlyn you are, like me, a keen swimmer? I did, when my RLS was a lot less, get a lot of relief from swimming as an exercise. I found the key was not to over exercise as that makes RLS worse. Do you find that your RLS comes on after a particularly lengthy bout of swimming?
I was on the patch for nearly 10years & it worked for mostbof that time but last year I was having more & more breakthroughs & a awful 5 months of relentless RL where I was on the floor with exhaustion & stress😩 The patch was no longer working hence the debates on what to do next & my reluctance to take heavy duty drugs so I am where I am @ moment trying to get to grips with what to do in future...
Yes I love swimming & try to go every week & find it really relaxing although your right about over exercising & it catches me up by a RL night punishment!
Your latest reply paints a very different picture from your initial post. Likely you were on a dopamine agonist (DA) drug via the patch (Neupro - Rotigotine is the usual culprit). That is very different from the buprenorphine patch that Davchar23 mentions. So you have experienced DA augmentation. If you have weaned off the DA patch and had no RLS symptoms generally until "the last few days" on only 25mg of Pregabalin, then you are a walking miracle. Most of us struggled mightily to wean off DAs and cope with the resulting DAWS (DA withdrawal syndrome - depression, etc.), and most require opioids after the DA is eliminated. One reason for this is that DAs damage dopamine receptors and that prevents gabapentin and pregabalin from working very efffectively, at least for a while after stopping the DA.
Can you tell us a bit more about your history: when did you come off the patch? How long of a tapering process did you go through? When did your RLS symptoms stop? Any changes in diet, medication, etc. between that period of no RLS and now?
I was on a very low dose 5mg of the Butec morphine patch changing it weekly for over 10 yrs which was effective until last year with intermittent RL episodes But last May until September it was non stop every single night & could only get a telephone appt with my hospital specialist who deals with ' geriatric complaints! Her advice was to stop the patches completely & prescribed Pramipexole but I had joined this forum & RL UK by then & saw all the negative posts about it & never took any .I became much more pro active ,& learnt a lot more & when finally saw her discussed about my iron ferritin levels & they are now monitored every 3 months & also decided about the Pregabalin option I'm now on.I have week long episodes & then it disappears for indeterminate lengths of time without any specific changes in diet/ exercise or lifestyle so it's very difficult to pin down what needs to be altered or added on any given day so as a ' walking miracle' I can only live in hope of a breakthrough in research which will give us all a definitive cure !!
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Desperate. 
Pregabalin 
Even more advise please!
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