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.
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.
Question: Am I taking Pregabalin correct? Symptoms start usually 8 to 11pm. Taking Pregabalin 100mg 7pm, 150mg 9pm, and 100mg 10pm. Total 350mg. Is this correct?
Pregabalin is readily absorbed, unlike gabapentin which has to be taken in split doses of 600mg.. It is usually prescribed in ONE dose. I'm not sure why you were told to take it separately.
350mg is above the average dose for Pregabalin.
But 350mg should cover RLS. The fact you are getting RLS every night means Pregabalin isn't really helping you. It is covering you for around 19 or 20 hours.
So, you could try taking 2 doses at 9pm and just before bed. Take 150mg at 9pm and 200mg just before bed. That may then last longer into the next day and stop breakthroughs at 8pm
If it doesn't help after 2 weeks, you can push for low dose, long life opioids.
DelilahAs you are in Wales, see Dr Jose Thomas in Cardiff or Abergavenny. I know it's a long drive from N
Wales, but he WILL prescribe methadone or Buprenorphine and as the Welsh NHS is completely different to the English NHS, he can prescribe opioids to you in N. Wales.
Dr Thomas is the ONLY doctor in the whole UK who is up to date on RLS and the correct treatment.
He stopped prescribing dopamine agonists 10 years ago. He saw the scale of devastation they caused.
Oh wow that sounds like a positive step. Can I just book an appointment through a Google search and see him privately? Would my G.P then be able to prescribe what he suggests?
Methadone sounds soooo scary but I can’t go on like I am!
Yes. He works on the Welsh NHS out of Abergavenny Sleep Clinic and privately out of Spire Cardiff.You can self refer privately and he could prescribe methadone. I know people in S. Wales can get methadone via their GPs. Hopefully, if he recommends methadone OR Buprenorphine, your local GP can prescribe it.
The NHS is a complete mystery to me. Wales and Scotland are completely separate to England. They have different rules.
You may experience postcode lottery, like here in England.
Ask your local pharmacy if Buprenorphine and methadone are red listed & if GPs are prescribing them locally. They are usually very helpful.
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.
Not in the UK so I don't know how helpful this is, but my current routine which has been steady for a couple of years now includes a gummy with a blend of THC, CBD and CBN. THC by itself isn't enough, and even with the CBD it doesn't always help, but the combo of all three works pretty well for me.
It's possible, as everyone is different. I found that THC by itself didn't help all that much for me, but something about the combo of those three has been very helpful.
I also learned after a recent trip that taking a couple of days off didn't cause a flare-up, but by the third day my legs were starting to get a little twitchy again.
Cannabis has been legal where I live for at least a few years now, and not just by prescription, which makes it easier to obtain. I’ve had good results when I have an especially restless night. It’s just enough to relax me so I can get to sleep easily whilst waiting for (the evil) Ropinirole to kick in. I think it’s worth a try! Good luck!
Hi your issues seem the same as mine, i recently signed up for releaf I'm in Blackpool and been trying for a week. I'm on blackberry balanced flower 10% cbd and 7% THC through a omaru dispensing system. It's early days but together with a small dose 75mg of pregabalin i sleep through the night. It may not work for you but i found the drs at releaf very helpful and happy to adjust based on my feedback.
Ah thank you for that. I’m open to try anything at the moment as it’s affecting everything! I’m about to be medically redeployed in my job as it’s affecting that amongst everything else.
I’m so pleased you’re getting some help from it. Can I ask is it expensive? I’ll have a look at them I’ve been looking at curaleaf. 😊
I've still got half a bottle in my fridge. It makes me lightheaded but didnt help me sleep. I started with 0.2ml of liquid taken using a plastic seringe that attaches to the bottle. Then every couple of day increase by 0.1 to a maximum of 1.5ml. I got to 0.5ml and couldnt stand the taste. I think I didnt really want it to work as the costs were out of my reach if I was using 1.5ml every day the bottle would last three weeks. Then another £149.99. I also tried illegal HTC vape which caused an awful cough and burning sensation in my upper chest. I am now taking Clonazapam 1/4 of a tablet at night which has helped but unpredictable. Cold shower and sleep patches
Ah that is expensive isn’t it! I wouldn’t be able to afford that. I’ve tried clonazapam was terrible for me. I was walking around the house all night like a zombie. Spending money ordering things I had no recollection of and finding empty wrappers of food I’d obviously eaten in the night and didn’t know! Hope it’s suiting you better. 😊
Me too, thats why I didnt use as prescribed taking far less in fact. I'm not saying its working but I did have two nights where I slept for 8 hrs each night then last night back to normal up and down all night eating, watching TV lying on the couch hoping perhaps I would sleep there. I take it each night as it comes. I live on my own so have the freedom to do what I like and I dont work so responsibilities are less.
Ah it’s still a pile of poo though isn’t it no normal routine 😫.
it’s great you got 8 hours for 2 nights though. God you’ve nit got worked to contend with too. I’m being medically redeployed because of it. I love my job too so really gutted about that. If they can’t find me a suitable replacement in 6 months they will let me go. Yet rls and plmd is not recognised as a disability I believe (it’s wrong) 😑
The price is 99.99 initial consult, 39.99 a month for the drs fees, prescription fees, dispensing fees, etc and 79.99 for the flower. So 120 a month if you use all the flower and you get appointments every 3 months to assess your course. I hope this helps.
From my neurologist: "Lastly, there is a clear role for Cannabis. This is not licensed for regular practitioner prescribing but there is a specialist clinic called Curaleaf which has a special license for providing Cannabis for a range of conditions including RLS. The clinic is based in London but they do advertise in Manchester now. I have one or two patients who do have regular video assessments with the Curaleaf team and take Cannabis in the form of Sativex (a nasal spray) alongside their standard medication". Not sure if you are in the UK but hope this helps. I haven't tried Cannabis yet myself. [EDIT] I see now that you are in the UK.
I’m in the uk in North wales. Yes that’s the website I’ve been looking at. They seem professional and all above board. It’s just a thought with my neurologist saying he’s at a loss now what to do. I will see what advice he’s had from his colleagues but I’m not hopeful at the moment. 😫
I've never got prescribed cannabis but since I live in a place where its legal I certainly smoke it daily for RLS relief. Problem is it doesn't last long for me, maybe 1-2hr relief then I wake again with RLS... And my asthmatic lungs are not appreciating it these days.
Hi ,I'm currently on withdrawal from pregablin it's taken 4 months to reduce me from 300mg ,I'm.now down to 100mg...8 weeks to go.I'm using brains cbd cream on my legs and a drop under my tongue, it works sporadically.
I'll be using cannabis ASAP as ,I've also exhausted all options and absolutely do not want to be medicated any longer as the side effects have been awful with everything I've been given.
The medical management have worked closely with me every 2 weeks as my pregablin has been reduced but for me it's a case of finding a solution that's probably not going to come from anyone in a white coat x
The GP only gave it to me for 3 months and said I wasn't allowed it for any longer.The side effects for me were nose bleeds blurred vision,falling, the side effects of withdrawal, acute agitation, high alert anxiety and fear ,this happens within a 48hour window with every 25mg reduction so quite alarming considering I was only taking 300mg ,the medical management team explained we all.metabolise medication differently so I.must be super sensitive...I'll be grateful to be off it .
They suggestion beta blockers and diazapam !!!!????? No !
My nerve conduction tests came back as clear but my iron levels continue to fall, it's a real lottery isn't it .
Hello, the iron is a really odd 1, I think.id explained previously that things were for windows with me.So the iron at night works until it doesn't, maybe 4 weeks at a time.
The cbd oil works again for weeks at a time then it stops .
The ibrufen works for weeks at a time and then it stops.
So I rotate between them all .
Currently on the cbd oil /ibrufen .
My friend delivered some home grown chemical free cannabis so I need to cook.this first apparently and then put it in my yoghurt because I can't smoke .
I've been using cannabis since I first started suffering from rls a few years ago. I aiso use it for other sleep issues. It definitely helps, sometimes more than other times. I haven't found cbd by itself to be effective but a combination of cbd, cbn, and thc seems to work the best. I grew the cannabis myself so it is chemical free.
I really sorry to hear you are going through this. My heart dropped when I saw you had a ferritin of 33. We all know your ferritin is low. Ideally it should be above 100. However, I am concerned with how long has it been this low. Your iron stores my be very low.
The first thing that should be done when diagnosing RLS is a morning fasted full iron panel. Ferritin is just one number, but more important is Transferrin Saturation Percentage, if TSP is under 20 percent an infusion should be considered, regardless of ferritin status. BTW, stop all supplements at least 48 hours and preferably more prior to the test, it will still skew the TSP. I go a week prior to the test with no supplements. I have had wonky results.
What really bothers me about all this is the doctors are prescribing some life altering medications without doing the necessary testing. For me none of the medications really worked until I got my iron issues corrected.
As for Cannibis, I live where it is legal. From my experience with every single prescription drug available for RLS. Cannibis would certainly help damppen the symptoms of RLS without all the side effects of Gabapentin, pregabalin, sleep aids etc. Don't get me started on DA drugs, those are just evil.
So yes, cannibis could potentially help and is worth trying.
I usually have my bloods checked every 3 months. I would never have gone on the pramipexole if I knew I could be in the situation I now find myself. I’ll be off them completely soon. 😊
From memory, go to section 8.3 and show it to your Doctor. The whole PDF is downloadable and free.
To me, nothing got better until I fixed my iron issue. Do you have any other symptoms of anemia? How is your hemoglobin and hemocrit? How are your hair and fingernails? Do you take naps, chew ice?
BTW, an iron infusion can improve the symptoms of augmentation! Don't over look it.
My hemoglobin is 148 I think, I’m not anemic now but I was. I’m premenopausal with fibroids so heavy bleeding (seems to have settled) and being coeliac weren’t helping!
My nails aren’t bad but loosing hair! I hope I find relief soon. Thank you for the information 😊
That's probably not the right number for hemoglobin. My point about hemoglobin and hemocrit is the body will do everything to keep them in range, but probably only at the low end. You don't want to be on the low end, aim for the middle or higher end of hemoglobin and hemocrit.
Oh that's terrible 😞 I really feel for you Delilah.I used opioids and vaped THC when withdrawal kept me up- I suffered only a month thankfully. The THC really really helped. We can legally grow so didn't need expensive script.
Maybe get a second opinion on that. I understand about rebound headache in relation to opioids and otc pain meds but you are suffering now and need help. Seems like he doesn't understand RLS. Suprise suprise.
It appears that you feel that low-dose opioids are the devil's work, but for me, low-dose (10mg/day) methadone was a gift from Jesus. Completely sorted me out - for 5 years now and counting, no need to increase dose.
In the UK, low-dose buprenorphine is more readily prescribed, but often with the same remarkable results. You owe it to yourself to try it. There's a great chance it will help, not hurt your migraine problems.
No I think DA’s are the devils work. I would be more than happy to try opioids it’s my neurologist that won’t prescribe them due to my migraines. I’d happy try them on the off chance they didn’t affect my migraines. Methadone scares me as we all know what it usually used for but I would still give it ago. I can’t carry on the way I am. Thank you for your reply that’s reassuring for sure 😊
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