Sorry I keep asking for advice. I’ve been particularly dreadful last few afternoon/nights limbs all over the place, head nodding, grimacing coming off this pramipexole. It’s really made me think about being exactly like this before starting the pramipexole and that’s what life is going to be like for me as the neurologist said he’s at a loss as to what he can do as I’ve exhausted other options. He’s not happy to prescribe codeine as I’m a migraine sufferer.
It’s now got me thinking life won’t be worth living if I go back to how I was. I had hope last time that these medications I’ve tried would work, but now it feels like off you go that it for you now.
I want a life!! So after all that has anyone tried PRESCRIBED cannabis? I’m seriously considering it now. Has there been any research for rls and plmd? Any thoughts please? 😊
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I did take prescribed CBD oil but it didn't help. Then I took cannabis, not prescribed by my doctor though, and because of THC content it helped me a lot for about a year. As tolerance developed I'd take it for a few weeks then have a few days off. It was good at the time! I have very severe RL, started as a teenager and got much worse in my 50s and 60s. Now I'm on methadone since Jan. I was very pleased with the effect of the cannabis while it lasted.
Ah thanks for your reply Ray. I’ve tried CBD oil in the past and it didn’t work for me either. Im pleased you got some relief from it that’s reassuring to know. I’m in the severe bracket it’s an absolute crock of an affliction!! I’m just thinking out of the box as I’m desperate that’s all.
I’ll get this pramipexole out of my system first and see where I’m at,
Which country are you in? In the UK, cannabis has been legal for medical use since 2019.
I used cannabis during withdrawal from Ropinirole. It doesn't stop the RLS, but it did knock me out long enough to get 30 minutes sleep after 4 days of severe withdrawals.
Who is your neurologist? Why on earth is he 'at a loss'?
There are other treatments apart from Pramipexole and codeine.
Has he taken blood tests? Has he discussed gabapentinoids or Buprenorphine or methadone?
I’m in the UK I’m under a chap at the Walton centre. When I saw him last week he shook his head and said because I’ve tried everything he doesn’t think there’s much else he can do. He was going to speak to a couple of his colleagues about me. I showed him a video of me in bed the other night that my husband had filmed he was shocked and said looks like plmd is as severe as the rls. He said an iron infusion might be in order but yet again will speak to his colleagues.
When I asked about something other than codedine he said opioids are all opioids and will still have the risk of a permanent headache because of my migraines!
Ive been up all night last 3 nights can’t keep still from about 7 in the evening. I’m aching all over due to all the involuntary movements if feel really low if I’m honest I’ve had enough.
I am not impressed by what I've heard of the Walton Centre. They seem VERY behind. Most UK neurologists are about 10 years out of date.
You say you've exhausted all other options. What meds did you try before Pramipexole?
Your RLS is severe because of the Pramipexole. All of us who have experienced augmentation experience constant, very severe RLS. Day AND night.
What you are experiencing is classic augmentation. It's very, very common. Every day we get posts like this.
Unless and until you try opioids, you will not know how they affect your migraines.
And codeine is very different to methadone or Buprenorphine.
And what about gabapentinoids?
They work for many, but not all.
They Do NOT work while you're taking dopamine agonists. I hope the neurologist didn't try pregabalin or gabapentin while you are still on Pramipexole? That is a complete waste of time.
So, keep getting off Pramipexole by reducing half a 0.125mg pill every 2 weeks. Use medical cannabis, but it doesn't really stop withdrawals, it jusr helps with a little sleep.
Start pregabalin about 3 weeks before the last dose of Pramipexole. 75mg and increase by 25mg every 2 days up to 100/150mg. Stay on 150mg until you're completely off Pramipexole and then you can increase up to 200/300 to see if it helps.
Other treatment options are iron infusions and methadone or Buprenorphine.
The methadone/Buprenorphine work on slightly different opioid receptors and have a long half life of 25 hours. They MIGHT not worsen your migraines.
However, lack of sleep and severe, untreated RLS WILL worsen your Migraines.
Did you try pregabalin BEFORE Pramipexole or any other dopamine agonist?. And did you take it correctly? Only at night?The average dose is 150-200mg at night. Most UK neurologists do not know anything about RLS and they prescribe it 3 times a day, which is for nerve pain. So it doesn't work. And gabapentin has to be taken in split doses of 600mg, 2 hours apart. As Dr Winkelman says, if you take more than 600mg in one dose, you may as well flush it down the toilet.
So if you didn't take pregabalin/gabapentin properly, they would not have worked. If you did, then an iron infusion should be the next step.
You don't have to wait for the Walton Centre, you can get it done privately for £800 at the Iron Clinic in Manchester. Just send the blood test results to them.
And then ask for Buprenorphine.
You can start very low, at 0.1mg.
It will reduce the severe withdrawals as well,but you have to get off Pramipexole completely. That just feeds the disease.
I did try them well before the Pramipexole. The pregabalin was at night only. I can’t remember the dose and that was before I was referred to a neurologist. The gabapentin was a split dose though. Thinking they did that as thought it may help with my fibromyalgia too.
I would appreciate something for the withdrawals as I’m just so out of sorts.
Yes I will definitely plough in with getting off the pramipexole for sure 👍
Sadly, the only thing that helps the severe withdrawals is a low dose opioid.I do hope you can manage to get through withdrawal. It is hellish, but necessary.
Canabis just dampens down the symptoms of RLS and does not address the cause which is most often neuro inflammation which also causes migraine. The answer is to avoid inflammatory foods like refined seed oils and carbohydrates.
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