RLS - What worked for me

[gentoorax]

Hi -

I'm a 34 year old male, I've had RLS all my life but it suddenly got A LOT worse when I turned 32 (potentially due to a bacterial infection I had which was since treated) but left me with very bad RLS every night, I couldn't sleep.

I tried pramipexole and gabapentin. Pramipexole worked but left me with dizzy spells, extreme tiredness, I might as well have not slept. Gabapentin didn't do anything for me, and yes I went through pramipexole withdrawal first and tried it for several weeks (several weeks of hell not being able to sleep mind!).

My doctor recommended neupro (rotigotine) transdermal patches, and I was very skeptical because, well the idea of medicine being delivered through your skin barrier, a barrier designed to keep stuff out seemed a bit far fetched. Anyway these patches have been a miracle cure for me, I'm on the lowest dose 1mg/24hr, and I haven't had RLS for months!

Given I've had such success with this, I wanted to share it in the hopes it might work for others, who are searching for different treatments. I realise it won't be a cure for everyone and some people have tried it without success, but this worked for me

[Joolsg]

Thanks for sharing and I’m delighted it’s helped. However, be wary about increasing the dose if it becomes ineffective as that may lead to augmentation. Most DAs will eventually cause augmentation but the Neupro patch has the lowest incidence.

[Heatherlss]

As Joolsg suggests. Just be wary of increasing the dose.

[Hidden]

Great that the Neupros helping you.

Hopefully however, you were warned of the long term consequences of using a dopamine agonist, which are the same, pramipexole, ropinirole or rotigotine (neupro). Also how to avoid them.

This is why DAs are no longer recommended as a first treatment.

I always wonder when someone says gabapentin doesn't do anything. It does work, if not for everybody. It's also better at improving sleep whereas DAs can cause insomnia. It does take a higher dose for some people.

However, the additional problem with neupro patches is they can cause skin reactions. I hope you don't put it in the same place every day.

Unfortunately there doesn't seem to be sn ifeal or one size fits all meficine for RLS.

Dream on!

If you can sleep that is.

[gentoorax in reply to Hidden]

Yes I know of these consequences all to well. I climbed the dosage ladder very quickly on pramipexole (which I had used for years) and did augment. Even when pramipexole was working and I could sleep, I felt like I had NO sleep, I had dizzy spells during the day and zero energy or motivation, I didn't have RLS when it was working properly (before the augmentation started), but I just felt like a zombie the entire time I was on it. Very difficult when you have technical job that requires a sharp mind and then compete rowing in your free time.

Looking back at pramipexole I wonder if the problem was the fact I only took it at night, the patch provides a slow and constant release over 24hrs. I don't seem to have any of these negative side effects on the rotigotine patch ("for now" <- disclaimer - let's hope it stays this way I will keep you all apprised). I'm on the minimum dose for the patch, the lowest they make, I certainly wouldn't be looking to increase the dosage. My next stop would be a neurologist that specialises in RLS (something I almost did before this) but until/if this stops working I have no pressing need at the moment.

I was very careful to state regarding gabapentin that it didn't work "for me", I'm aware it works for others. I had gave it plenty of time and tried doses as high as 900mg (I didn't go as far as the 1200mg that I know some people are on), this was also after completely coming off pramipexole (not easy). I went through months of agony feeling like I was taking nothing.

If I forget to change my patch on time which happens very rarely I fall back to a low dose codeine which can act like a crutch to get me through the night, but I usually have a groggy following day.

[Hidden in reply to gentoorax]

The extended release nature of the patches does mean that they are less likely to cause augmentation so I hope they last for you.

Maybe if they fail you could try gabapentin again 1200mg or better maybe pregabalin.

As you probably know, the reason for taking an immediate release DA at night, is because that's when they're most needed. If you were to take them earlier in the day, thgen by the time they were most needed, they would have worn off.

[Pippins2]

I have been on the patch for around 8 years, just 1mg and I take a break from it every 3 /4 months or if I feel it is getting less effective. I also take Pregablin and a very low dose of slow release opiate During the patch break I take Codeine, Clonazepam and Zopiclone and aim for 2 weeks break. It is difficultbut then the patch works really well for months and enables me to stay on the lowest dose of 1mg so that may be an option for you, I do have an allergic reaction to the adhesive backing so use a steroid inhaler (type used for asthma on the site occasionally ).Good luck x

[finder1234]

We are all different ....no one treatment for rls or anything. As i have said prev Schweppes indian tonic water (contains quinine) works for me every time. I also do leg stretches (hang onto something and while bending the oposite leg..i e left knee to wards floor right leg stretched out behind..toes toward floor and push down with right knee) HARD !repeat other side... TRY IT.

[Hidden in reply to finder1234]

Agreed. A banana helps as well. Not many people accept these remedies but they have helped us.

[bill54321]

Harmone change, like accummulation of magnesium behind the brain barrier an aggravate RLS. Maybe we lay people need to Tell the American Academy of sleep to get an endroconologist(sp) on their staff They are so far behind in establishing new classifications od Awake and sleep myoclonic jerks they claim are in our head. Give me a break.