PREGABLIN. a possible cure.

[whalley]

Not a question, but this may help someone. I suffer, from amongst other things, headaches. My doctor had me try a different tablet to the usual asprin. It did not work on the headaches but has stopped my restless leg about 95%, It is PREGABALIN. I take two 50mg in the morning and two about an hour before bed. Previously my leg would jerk around at night, one leg or the other, never both at once, keeping me awake. Often I would be up at 4 am looking out of the window. Please ask your doctor for a prescription and try it.

[Madlegs1]

Indeed! It should be one of the first line drugs for RLS. Or Gabapentin.

[Hidden]

I found this out by chance too several years ago & before it became an official treatment for RLS. A word of caution though - eventually the effect wore off and I needed higher doses which then also stopped working. There is some evidence it can cause augmentation though possibly a different mechanism from the dopamine agonist augmentation which can occur.I wouldn’t increase the dose if it stops working - and wouldn’t have myself if I knew then what I know now

[tecsass in reply to Hidden]

Im on pregabalin this happened to me what was ur experience of increasing the dose if u don’t mind sharing?

[Hidden in reply to tecsass]

Hi, each dose increase was effective again for a while then effect wore off. Eventually I got side effects I didn’t like & so didn’t want to increase further & since it wasn’t working I came off it. It was hard to come off as each snack dose reduction resulted in worsening symptoms & the small doses at the end, even after several weeks, were the worst. I am far worse now than I ever was pre Pregabalin. It feels to me as if it reset receptors or something. It could also be that I would have been this bad anyway. I never took a DA

[involuntarydancer in reply to Hidden]

It does seem, anecdotally, that chasing rls symptoms with any drug has a bad outcome ultimately. The best systems seem to be the ones where a fairly stable amount of treatment drug is required - usually opioids. I wonder if a system whereby the sufferer proactively manages drug treatment by reducing rather than increasing the dose as (or before) it ceases to be effective and using complementary treatments, either temporarily or permanently, could help.

[TheThirdDoctor]

Right now I am in the process of coming off the DAs and will be trying Gabapentin. I am hoping that it works.

[briesmith]

I first tried Ropinirole but suffered augmentation immediately. Now on 300mg of Pregabalin (at night/before sleep) which, while not causing augmentation (so far), doesn't seem to be affecting day time sleepiness caused by my sleep apnoea. The implication being that it is not stopping the RLS/PLM.

My biPAP machine - with the new furry Resmed mask - seems to have stopped my snoring (according to the Snorelab app I use) but I still have daytime sleepiness which I assume is caused by (continuing) RLS/PLM.

(Weirdly, my biPAP machine reports an AHI of 3 - 7 even though Snorelab says I haven't been snoring. Strange eh?)

The single problem with any RLS treatment is the lack of NHS provided monitoring so that patients have no idea whether the treatment - whichever it is - is working or not.

I looked into buying an Actigraph set-up but at a cost of £2,000 had to let it go.

So, I take a very powerful drug (Pregabalin) which may or may not help with night time RLS but which may be having all sorts of other effects. Not an ideal situation for me or the medics.

I think it should be part of the NHS RLS/PLM treatment protocol that Actigraph or similar monitoring is provided to ensure that the drugs are working (or not).

[involuntarydancer in reply to briesmith]

Further to what Manerva says, I find that my RLS symptoms wake me up and keep me awake. That is the single most commented on impact of RLS - inability to sleep while experiencing symptoms. If you don't know whether you are having symptoms, then I would say that Pregabalin is performing its function.

Is it possible that your daytime tiredness is a side effect of the Pregabalin rather than an indication that it is failing to treat your RLS? I found I was permanently exhausted during the six months or so that I spent on pregabalin. In fairness, in my case it is possible that the tiredness was also referable to the opioids I had to take because pregabalin did not touch my rls symptoms however tiredness is an often mentioned side effect of Pregabalin.

The exhaustion resolved for me when I started taking dipyridamole which is worth considering for any rls sufferer bearing in mind the recent study that found that dipyridamole had a marked positive impact on rls symptoms. It is an anti-coagulant so can also help with some heart conditions.

[bedith6]

Hi Have you found that Pregabalin has caused weight gain? y g.p.wants me to try it but as I have spent most of my adult life trying to stay slim(ish) I just don’ want to put weight on Thanks

[Hidden in reply to bedith6]

Yes Pregabalin caused me weight gain ( maybe ) but less so when it was working. So more likely weight gain was due to snacking when desperate for sleep when wondering round at night. I have put on much more since off it but with florid symptoms

[Hidden]

But like I’ve said before anyone who takes anything keep as informed as possible. I would recommend only taking any treatment if desperate. Looking back, though a nuisance I could have managed without treatment compared to what I have to deal with now

[involuntarydancer]

I agree; if I had had any insight into how little my health professionals knew, I would have taken a different path from the outset. But how could one possibly realise that until after the event? Questioning the extent of a doctor's knowledge was not something that would have come naturally to me. I did not have internet access when I was started on pramipexole

[Hidden]

The thing is, it’s still the knowledge is still evolving. As you might know I was a health professional ( front line GP ) and didn’t have a clue even though it ran in my family. There was just no info out there & it competed with so much other viral stuff. I have learnt far more from this site. The 1 thing I do recall which concerned me +++ is just before the DA’s were recommended for RLS many years ago. There was a publicity campaign about the frequency of RLS. It must have originated from the marketing depts of pharma. Then some time later the DA’s appeared. I remember thinking ‘no thanks’ from knowledge about their effects on Parkinson’s but the publicity was obvious it designed to create the market. I suppose at that time no one knew about augmentation. Knowledge always develops over time. As I’ve said before for me Pregabalin was a miracle, taken for neuropathy & the effect on my RLS found by chance before it had been researched. I personally encouraged the drug cos to research it as it was for me a miracle with no side effects ..... and then look what happened. I have been for blood tests to my GP this am & it was really difficult to get an updated ferritin - in fact the computer request system blocked the request & will only accept if anaemic! In the end the GP requested as a special request in the special notes system. Whether will be tested who knows!

[Hidden in reply to Hidden]

Vital stuff not viral stuff!

[Bstars]

I also suffer with terrible headache and migrain, pregabalin did not help with that but as I now found out it did help with rls alot .I have been recently been put back on pregabalin to help the test.

[briesmith]

I am being treated by the Sleep Clinic at the Royal Brompton Hospital in London. Having suffered from sleep apnoea for 20 years and being treated for it by the NHS (with cPAP) I learned I had RLS/PLM (I'm not sure which) after an in-patient overnight polysomnography.

Until then I had experienced some daytime leg twitching but no more than that and then only occasionally and for short periods of time (mostly in the evening).

The rest is as I described in my first email. I was completely unaware I had RLS/PLM and put my daytime sleepiness/exhaustion down to apnoea.

Sadly, while cPAP/biPAP will remedy sleep apnoea, there doesn't seem to be any cure or remedy for RLS/PLM. Oh, and before anyone piles in about iron levels, my levels are higher than average rather than lower.

My conclusion is that RLS/PLM is a bit like other neurological problems - depression, anxiety etc - and, like them, there is, sadly, very little medicine can currently offer sufferers.

That's why I think Actigraph type monitoring is so important. Until remedies are monitored and the results collated, there can be very little understanding of what works and what doesn't.

Giving sufferers powerful drugs like Pregabalin and opioids is, frankly, unethical to some degree unless their effects are measured. Simply prescribing in hope is poor practice.