Hi everyone
Seeking some advise, I've now been off Ropinirole for three weeks, which has been pure hell, I'm sleep deprived & desperate. Is there any sleeping pills that are safe to take, so I can ask my GP.
I currently take 600mg of Gabapentin on an evening and prescribed Cannabis oil in the morning and night, nothing seems to be working my RLS has gone into overdrive and in so much pain with my fibromyalgia.
Any help would very much be appreciated
I would increase the gabapentin to 900 mg and wait a couple of days and then start increasing it by 100 mg every couple of days.
There are a number of sleeping pills you could ask for. Zopiclone, Stilnoct, Xanax, Lorazepam are some. I would avoid clonazepam and valium as they have long half lives and can make you sleepy the next day.
If your doctor is reluctant say you only want a few to tide you over until your symptoms settle.
Thank you Sue very much appreciated x
If you stay on any of the benzodiazepines more than two weeks you will become dependent on them and they are every bit as difficult to eliminate as the dopamine agonists. Benzodiazepines essentially ruined my life.
I am sorry to hear that! You are very sensitive to drugs as you are having a hard time coming off pramipexole even by micro tapering.
However although you have to wean off them very slowly, I was on clonazepam for decades and was able to get off it by very very slowly stopping it. Same thing for valium which I was also on for decades. At a later date I went back on clonazepam for 6 months and that time it did not take as long by reducing by .125 mg every 2 weeks. In neither case did I have any withdrawal symptoms, and certainly not like the horrible ones that one gets withdrawing from dopamine agonists. But everyone is different.
I belonged to a Facebook group and there were lots of us who went through pure hell. I'm glad you did not have that experience but I would caution anyone against risking becoming dependent upon benzos.
Fair enough.
What dose were you on if you don’t mind me asking?
The starting dose was 10mg. of Valium.
What was the ending dose? If u don’t mind me asking again.
0.0 mg! It took me eight years to micro taper from Valium.
Well done for getting off Ropinirole. It can take months for withdrawals to settle.I agree with SueJohnson. You can now start to increase the gabapentin.
If it doesn't help after 3 months, come back on here. You may then need to switch to low dose opioids.
And do file a Yellow Card Scheme report about augmentation.
Unless everyone does this, doctors are totally in the dark and keep telling patients augmentation is rare.
I remember you were having shooting pains before. Have they resolved?
No Sue they have now diagnosed me fibromyalgia about a month ago, the withdrawal has made things worse, I need to go back to GP
Lyrica can be very helpful for Fibromyalgia and can help RLS, too. Try it. Best Wishes, David
So can gabapentin.
Marymill Can you describe the shooting pains? Are they like a flash pain, for example foot or knee, but go away right away? Thanks.
I am sorry for your predicament. I feel like I have been there before. I would take the gabapentin spread out. If you go to bed at 9, maybe take 300 at 5:30, 300 at 7:30 and 300 at 8:30. This should help the gabapentin absorption issue.
I know it is rough right now, but have you tried Ibuprofen or Acetaminophen? Both of those seem to help my RLS.
I am sure you have checked your Iron levels, but I have have to ask.
I hope you find relief soon.
Hi, thanks for your message, I get a lot of pain in my legs and arms, with shooting pains in the legs, they also get red hot and itchy, also not sleeping. Yes had my irons done and on supplements now. Going to increase the Gabapention and split dose.
I may not have told you how to take the gabapentin but if I have, forgive me for repeating myself.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Since you will need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.
If you are still getting withdrawal effects from coming off the ropinirole the gabapentin won't fully work until those go away.
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms.
If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
why is it that GPs and Health advisers bang on about how important having 8 hours sleep a nighnight is but as we all know suffers of RLS get nowhere near 8 hours but they find it exceptable on a monthly basis I seem to be at logger heads we GP about sleep deprivation and trying to hold down a full time job
I agree , my Gp reluctantly gave me some Zolpidem for sleep which were fantastic but .....he gave me 7 tablets and doesnt want to give more. It makes me so angry . Its a constant battle for everything .
I know. It is ridiculous! And then they refuse to give us the medicine that will control our RLS and let us sleep. I am lucky in having a knowledgeable doctor, but they are rare.
My doctor tried getting me back on pramipexole which I refused at first but after a talk he convinced me it would help 3 tablets a day then once home got a call from GP telling me the dose he advised was wrong and I should be on one tablet a day I refused to take them full stop that's what I'm up against clueless doctors regarding RLS and who I feel laugh at my symptoms totally disrespectful
And they think they know everything.
I'm sorry to hear that.
If you have access to medicinal cannabis, there's a preparation called RSO (Rick Simpson Oil) that never fails to put me to sleep. It's taken orally, not smoked. Otherwise, low-dose Buprenorphine therapy is the "ne plus ultra" for UK RLS patients, if you can find a doctor knowledgeable and courageous enough to prescribe it.
I take gummies and they really help me sleep. Please see my article on what to take and how to take it. I've learned through trial and experiment what seems to work best. Please remember that every body is different but it is definitely worth a shot if you can access edibles where you live. Rick Simpson Oil is a good suggestion as well but I hear it is really powerful: one response to my post said he tried it and was afraid of being that stoned.
My post:
healthunlocked.com/rlsuk/po...
I also take gummies - 5 mg. CBN with 5 mg THC in addition to .5 mg lorazepam.
Huge congrats at getting off Ropinerole. I have found valium/ diazapam in the past helpful for sleep with no adverse effects the next day as suggested by Sue.Zopiclone on the other hand drugs me the next day.So it's about finding what suits you as an individual.
I was on Dopamine Agonists for 22 years and, with the help of Pregabalin, took four years to get off them. The final stage required the addition of a slow release opioid (Morphine Sulphate). I am now taking 300 mg Pregabalin and 25 mg Opioid at night. My RLS is now bearable with mild symptoms every night. The transition would not have been possible without the opioid.
Trazodone in low doses (25-50mg) which is an anti-depressant has helped me for sleeping. It promotes deep sleep and is not addictive like the Z-drugs
Thank you so much everyone for your comments, I have an appointment for Wednesday, so hopefully will get something sorted, as I am struggling with the lack a sleep and trying to hold down a job, luckily I do have a very understand boss. Thanks again
Sorry to hear you are having such a rough time. I’ve recently been through what you are going through. I augmented on pramipexole and came off them. I took my last one on August the 31st. It was pure poo, pacing all night, no sleep worst thing I’ve been through. I had no medications to help either. I begged the Dr for codeine reluctantly she gave it to me but it didn’t help. I to have fibromyalgia and walking the house, running a marathon in bed does not help with the aches. My neurologist has now put me on Ocycodone which is helping. It will get better but it does take a good while. Best of luck on Wednesday with your Dr.
My second laugh for the day - running a marathon in bed. 🤣🤣🤣
Desperate. 
Depressed, hopeless and sleep deprived with RLS. HELP??
Desperate for sleep.
Desperate
What really helps?! I'm desperate for some decent sleep! 
