Lucky Some Nights

[Woody4]

Something I should have posted in the beginning. I don't/didn't have rls every night. Sometimes when it started I could wait it out as that it wouldn't be very bad. Other times it would cause me to scream. My GP put me on meds for every night. Is there any medication that will stop rls once it starts. I tried with roprinole and it didn't seem to work.

[Hidden]

Hi Woody, I'm wondering how you've been getting on since your last post, I recall you were taking a huge dose of Pramipexole and suffering augmentation.

My own experience of being on high dose of Pramipexole is that I had to take it every night or I would have RLS symptoms all night. Certainly for me, once symptoms have started, taking a belated dose of Pramipexole didn't stop the symptoms.

I have read some people don't take medication every night, but if I recall correctly they only take a low dose.

This is purely my own opinion, but I consider RLS medications being for "preventing" RLS, not "treating" it. Like a steroid inhaler helps prevent an asthma attack, like the contraceptive pill. Once you're pregnant it's not a contraceptive pill you need!

I've also, in my experience, never come across anything that will treat RLS once it's started.

If you were on a low dose, skipping a dose might work, but it's not actually something I've considered.

[Woody4 in reply to Hidden]

Yeah the replies to my last post kind of scared me. I've since been able to lower my dose to .5mg per night with no augmentation. I can't understand how I was starting to augment when taking 1mg but not after backing off to .5. When switching from roprinole to Pramipexole I went 3 days with no meds and no rls. This thing can drive you crazy trying to understand it.

[Hidden in reply to Woody4]

You don;t get augmentation from reducing a dose, you get withdrawal effects. It's a bit of a toss up as to which might be worse. It does sound as if you've done well to get down to 0.5mg.

You might consider reducing it further.

[Woody4 in reply to Hidden]

Pills are really small but I'll give it a try. Thanks

[Hidden in reply to Woody4]

I you're taking 2 X 0.18mg (=0.25mg) tabs and they're hard to cut into 4, I know. You could ask your doc for 4 |X 0,088mg tabs and you only have to cut them in half

[Woody4 in reply to Hidden]

Might not need to worry about cutting pills. Tonight .5 isn’t working. I get most of my episodes in my arms. And tonight they are not cooperating.

[Hidden in reply to Woody4]

I'm really sorry, this is really difficult for you. You are suffering augmentation because of the high dose of Pramipexole you're taking and if you stay on that dose or raise it, it will get worse. Without any prospect of it ever improving.

If you carry on reducing the dose, you will get withdrawal effects, i.e. it will get worse. However, if you can reduce and stop the Pramipexole it will eventually improve.

I'm afraid some people describe getting of. Pramipexole as hell.

Once you get off Pramipexole things will improve again to round about how things were before you started taking Pramipexole, which is probably better than how things are now.

Because of this, there's a few things you need. One you need help to get off the Pramipexole, two you will need an alternative to Pramipexole (NOT another dopamine agonist).

In order to achieve these, it first sounds like you need to find either a doctor who's either knowledgeable about RLS or at least willing to discuss and consider the information you give about RLS. The doctor that got you into this situation in the first place doesn't sound suitable.

I understand that this might be difficult for you.

I have read many posts on here about the benefits of taking an opiate in the short term to relieve RLS symptom whilst withdrawing from Pramipexole. I hesitate to mention it, but it sounds like you might need it. If you look into it and decide you might want to try that then the difficulty might be getting a doctor to prescribe a suitable opiate.

There is a well reputed RLS expert in the US Dr Buckfuhrer and I'm told you can write to him for advice and he will answer. I 've no evidence that Dr B answers all queries personally, but I have emailed and I did get a reply which was very helpful, offering advice and information. You can email (Dr B) by using the link below and clicking on the yellow email button on the left side.

rlshelp.org

I appreciate that it's really difficult, but please try to get free of Pramipexole. Ultimately it is not your friend.

[Parminter]

If you have familial RLS then it will slowly get worse over many years.

If you can get through most nights without meds then I would be wary of starting them, rather get up and stretch and use heat/cold to ameliorate the symptoms.

All drugs have problems and side-effects - there is no free lunch - so keep them at bay for as long as you can.

When you have bad sleep disruption three or more times per week, then that is the time to start.