Dreadful nights

[Muftah36]

This group is amazing and always helpful. I’m hoping someone can help me out now cause I’m losing the battle.

I have regressed over this past month , going from a couple of bouts every night to almost all night long there’s no relief. Its become unbearable now and I dread going to bed. I’m exhausted during the day and I’m feeling the effects of sleeplessness. I’ve been down that road with Ropinarole and I’m scared that’s where I’m headed. I don’t know how to go on . I’ve switched from Gabapentin to Pregablin 250 about 6 weeks ago. It seemed to work better at first , but it’s gotten much worse, up all night every night. I’m also on Dilaudid 2 mg and Trazadone. I avoid the triggers . I don’t know where to go with this, but I can’t go on this way. I have not had a night’s sleep in years. I’ve done the iron infusion about a year ago without improvement . If there’s any suggestions I’d really welcome them. I’m at my wits end.

thanks for reading this and giving it some thought.

[ChrisColumbus]

When Joolsg told you 3 months ago that "Methadone and Buprenorphine are highly effective for Refractory RLS" you answered that your doctor "won’t prescribe those at this point".

Since you've moved from gabapentin and tried pregabalin for 6 weeks, will your doctor now consider these low dose opioids? The following may help:

healthunlocked.com/rlsuk/po...

BTW, your Profile doesn't show which country you are in: this can be important in advising what help and/or treatment is available and where.

[Muftah36 in reply to ChrisColumbus]

Thanks for your reply . I will discuss those options with my doctor in a few days but opiods are not easily obtained here in Canada so I’m doubtful she will prescribe. She has been excellent in following me and tweaking the medication. I’m scared she will give up on me.

[ChrisColumbus in reply to Muftah36]

Canada is of course not alone in suffering an 'opioid crisis', but this *shouldn't* stop the prescription of appropriate low dose opioids which have been shown not to lead to addiction or tolerance (as per the info in the links in the piece I shared). Hopefully your doctor will read through that material and be reassured.

However, it may be that your doctor's hands are tied. You still have the possibility of increasing the dose of pregabalin: the effective pregabalin dose is usually in the range of 150 to 450 mg per day, so at 250 you are still in the middle of that range.

Sue's point about the possibility of you suffering mini-withdrawals from hydromorphone (Dilaudid) is also relevant: the half-life of standard hydromorphone is only 2–3 hours; on the other hand, the half-life of extended release hydromorphone is 8–15 hours.

Best wishes.

[Marlayna67 in reply to ChrisColumbus]

I agree with everything Chris said. Those mini withdrawals are hell on earth. As a long time passenger on the slippery slope of drugs to save my sanity, Suboxone is the answer. I really wish we could get to the point where it is the first line drug and saves us all the agony of having to try 1 million other things first. I hope your doctor will read the recent research and just just give you a script for it.

[SueJohnson]

Since pregabalin helped at first try increasing it.

[Joolsg]

If I were you, I would now push for a low dose, long half life opioid.Where are you? In parts of the UK, Buprenorphine is 'red listed' so it's hard to get.

But I think Buprenorphine should be your next medication.

[Marlayna67 in reply to Joolsg]

1000%!

[SueJohnson]

are you taking the Dilaudid every 4 to 6 hours? Otherwise you may be suffering from mini withdrawals.

[Muftah36 in reply to SueJohnson]

I only take the 2 tablets at night before bed.

[Guitarist235]

Hi Muftah I've also been suffering from RLS and the only medication that really worked for me was Pramipexole. However there are some readers on this forum who advises against it because it may lead to augmentation etc, but it has worked wonderfully for me and no negative side effects. In fact I've been off any medication now for about two months, with only slight symptoms now and then, so I'm totally satisfied with the medication. Hope it works for you too. Good luck.

[Joolsg in reply to Guitarist235]

As Muftah has already experienced augmentation on Ropinirole and states ' don't want to go down that road again', I think another dopamine agonist is definitely out of the question.Good to hear you're off all medications for 2 months. Are you saying Pramipexole actually 'cured' your RLS?

[Guitarist235 in reply to Joolsg]

I haven't taken anything else for my RLS, though I have started walking more regularly, so that's all I can think of, didn't change my diet or anything else for that matter.

[Ischmael]

wow!! You sound like me. I had been on Ropinerole for 14 years and have just weaned off, unsuccessfully so far. I’m on Gabepentin 1200 mg and a neuro patch every day. The minute my body starts to shut down for sleep RLS starts with a vengeance.it is truly torture . I wish I could sleep while standing . It’s the only relief I get. I don’t know how I function during the day . I’m going to a sleep specialist now so hoping we can find what works. Best of luck to you.

[Joolsg in reply to Ischmael]

Why are you on Neupro patch? If you augmented on Ropinirole, you'll quickly augment on Neupro patch. Dr Berkowski has talked about this recently.

[SueJohnson in reply to Ischmael]

Gabapentin won't help you much until you are off the Neupro patch. And obviously you are already augmenting on Neupro. I suggest you bite the bullet and come off it as it will only get worse.

You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch back to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.