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.
You got as high as 80mg? No wonder you had a tough time. I blame your doctor.
To repeat, I started at 10 mg of Valium and it took me eight years to get down to 0.0 mg of Valium. Like many people who were put on and off Valium for almost 30 years I ended up with a kindled central nervous system requiring micro tapering from any drug that affects the central nervous system.
Terrible!
The benzos are to panic and anxiety disorders what opiates are to RLS. They are the finest class of drugs we have - at the moment - and for quite some time now.
Opiates can be a long term solution to a long term problem ie RLS. Or they can be a short term solution to a short term problem ie post medical procedure (knee replacement) where blood thinning NSAIDs aren’t advised and Tylenol doesn’t quite cut it. As I hope you can see, the opiates aren’t the problem, and aren’t what “ruins” people’s lives. Rather, it’s the RLS, or the bum knee, that are potentially life “ruining.”
The problem comes in when opiates become a “long term solution to a short term problem.” RLS is not, generally, a short term disorder, nor is clinical depression or OCD or panic disorders or psychosis.
As with opiates, the exact same thing is true with the benzos. Many people have clinical depression - even familial clinical depression and they have the anxiety and insomnia that tend to go along with this condition. Thus, the SSRIs and benzos become a long term solution to a long term problem and the benzos are definitely NOT the problem, or what “ruins” these people’s lives, but rather the underlying clinical depression is, especially if left untreated.
Benzos can also be a short term solution to a short term problem ie the death of an elderly parent. It’s not uncommon for a family doctor to provide a 30 day supply in this situation. If problems persist then the doctor may prescribe an anti-depressant with anti-anxiety properties, at this point. Not ideal, and non-drug therapies, like psychotherapy, may be all that is needed in this situation.
Problems may come in when benzos are a “long term solution to a short term problem”, like what I mentioned above - the death of an elderly parent. I assume this is you and why you claim benzos “ruined” your life, rather than the short-term underlying problem that drove you to them in the first place and why you are telling people to avoid them at all costs, the way we do with the DAs. And if you’re going to reference “kindling” it might be wise to find a defining article by a well - established institution. I found mostly recovery centers trying to scare people (as usual) and suck you in. And in most instances it references this phenomena in terms of alcohol. I found two articles from the NIH from the 80s and 90s that weren’t helpful to me. Here’s one, pmc.ncbi.nlm.nih.gov/articl.... Maybe you’ll have better luck. It just seems that it is no longer recognized by the NIH or that it ever was by any major medical center.
Sorry this crazy situation happened to you, but benzos are not like DAs. DAs are not the best we have for RLS or Parkinson’s for that matter. Like I said, benzos are among the finest we have for treatment of panic and anxiety disorders, both long and short term. Plus, as any doctor will (and should) tell you…it’s hard, if not impossible, to distinguish between withdrawal symptoms and return of the usually harrowing symptoms that drove a person to the benzos in the first place. What I find intriguing are case studies/reports of people who aren’t told (or just don’t know about) the withdrawal effects of benzos. When asked about it months later they can barely recall any issues. Ignorance is bliss.
Benzos aren’t a cure. Nor opiates. People can’t expect to stop these drugs and have their long term, or short-term, underlying condition magically disappear. Hope whatever drove you to the benzos is now over or you have found a more suitable solution. Be well my friend.
I'm curious about your statement about case studies/report of people who aren't told about the withdrawal effects of benzos. Are you saying that people who weren't aware of withdrawal effects, didn't experience any, or couldn't recall any?
If so, perhaps there is an element of suggestibility, i.e. when people expect withdrawal effects then they experience them, but i do think that people respond so very differently to different drugs and also some people are extremely sensitive to even minor dose changes.
For example, I was on pramipexole for approx 18 to 24 months. I experienced augmentation but at the time wasn't aware of any withdrawal effects. I don't recall having experienced any when i did withdraw. I may have done, but because i wasn't looking out for any, may have attributed them to something else.
Conversely, because i have withdrawn or significantly reduced my dose of both clonazepam and pregabalin about three times now, each time, i become more acutely aware of the effects of the withdrawal (and as a consequence, possibly experience them more keenly).
Without wishing to minimise drug withdrawal symptoms (which can be significant and awful), I do think that in some instances, because one is aware of potential withdrawal effects, some of what they experience may be anticipatory effects.
Yessss!!! Suggestibility. It is soooo very real. Like literally a living breathing entity and MAY account for the highly ignored issue of benzo “kindling.”Sometimes exposure to pain will build a tolerance to it, but more often than not, it decreases the tolerance to it. So I have no doubt that the fear of withdrawal contributed greatly to this member’s worsened symptoms each time. There is a pathway for fear (and it probably has a memory) and is readily triggered and then it triggers physical manifestations. We are our worst enemy.
It was a while ago I read the case studies but I remember an older woman who just followed her doctor’s instructions without question. I believe the benzo was prescribed when her husband passed. At some point she was told to taper. I assume she was one of dozens, if not hundreds, of people the researchers contacted. She must have told them she doesn’t know what withdrawal is and didn’t have any of the symptoms they described. And they must have found a correlation between the two, time and again, and thus drew the conclusion the less you know about “possible” outcome from stopping a drug, the better.
What did you take after withdrawing from Prami? Glad you didn’t know about and didn’t suffer DAWS. DAWS seems more clear cut than “kindling” because DAs do shrink our wonderful D3s and grow the excitatory D1s. These receptors control more than just RLS. Well, they control dopamine and I should say that dopamine affects more than just RLS. Not least of which is a sense of well -being.
How much clonezapam were you on and what amount did u taper to?
I was put on benzos in 1972 and was never told that they caused dependence or there was any problem discontinuing the drug. When I stopped taking it in 1983, because it has a two-week half-life I didn't experience withdrawal symptoms until then but did not associate the withdrawal symptoms with having stopped the drug. Then I was misdiagnosed for over a year and put into one psych hospital after another. It ultimately did cause a major depression and the only treatment that worked was an MAOI. The depression became recurrent and I was put on and off the MAOI and Valium for 30 years. As a result my CNS became kindled and anything that attacks the CNS causes me to become dependent and has horrific withdrawal symptoms. I'm not all that sure that benzos are good for anything other than short-term situations. To the best of my knowledge the best treatment for panic disorder is cognitive behavioral therapy (CBT).
You’ve been thru hell, but it’s not the fault of the Valium. The medical community failed you. Your doctor who prescribed the Valium for 11 years, probably at ever increasing doses, for some condition, should have monitored you when he decided it was time to come off. And certainly when you came to him in an agitated state he should have known the issue and not left you to languish in one hospital after another. Plus, what kind of doctor or hospital stabilizes a patient on an MAOI (and Valium) and then keeps taking it away like it’s some kind of game? Sounds like you have several lawsuits there, just not against the manufacturer of Valium. Glad your doctors finally have you on the right treatment plan. I remember reading a while back that they were looking at MAOI inhibitors as a treatment for RLS. I could be mistaken. Take good care.
I could not find anyone in the mid-80s who would testify against other doctors when it came to misdiagnosing withdrawal symptoms from Valium as panic attacks. I tried to bring a lawsuit against seven physicians and a couple of hospitals but the lawyer could not find anyone willing to testify against their fellow physicians.
Was the Valium prescribed for panic attacks in the first place or generalized anxiety?
Neither. I told the doctor I had trouble sleeping sometime. I was 24 years old!
Yep, that could easily be me or anyone. Mine started more like 20. A total mind f—k. If I spent a night not sleeping at all it would set up a vicious cycle of chasing sleep and worrying about not sleeping until the mind f—k evaporates. Persists to this day only starting in my 30s I use .5 klonopin to get out of the vicious cycle instead of waiting for the cycle to end naturally. One day I’ll grow some kahonas and suck it up when I can’t sleep.
CBT and DBT are great if implemented correctly. It's highly dependent on finding a therapist that knows what they are doing and that the client also match well with them. Even then studies show the success rate is about 60% a similar rate to medication therapy. What most patients are not made aware of when entering a behavioral therapy program is that is that there are also side effects to this approach. When a patient isn't successful with behavioral therapy for whatever reason, they are often left with increased feelings of shame and low self worth. Most often this is because many therapists believe CBT is the holy grail of treatments. Any failure is put on the patient that if they tried harder or had a better attitude it would have worked. Just like medications some people just don't respond well to it.In regards to medication, i agree is is so dependent on the individual. I can go off benzos or ambien cold turkey no problem. But when i try to reduce my opiod dosage it is pure torture.
I blame the doctors too. I went through hell. I've never had any medical professional warn me about the potential problems.
Even worse than the dependency, they will stop working AND make you dependent on them to sleep at all.
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. 🤣🤣🤣
Depressed, hopeless and sleep deprived with RLS. HELP??
Desperate. 
Desperate for sleep.
Desperate
What really helps?! I'm desperate for some decent sleep! 
