Ropin-a-ROLLIN over me like a semi truck

[Todge]

I have been slowly tapering off Ropinirole. I found this site during one of the first of many horrible nights. It has literally been a lifesaver. I raised 3 kids alone going to nursing school at the same time. I'm tough. This whole process has been demoralizing and has even changed the trust I used to have in myself to handle anything life throws at me. So silly.. I augmented through Mirapex after about 3 years... I dabbled in Gabapentin but it wasn't strong enough (to get me through the first withdrawal as I now know it was.) I was then switched to Ropinirole and over the course of the next 5 years increased doses until I hit 4mg. When I started needing to add daytime doses I knew I had to go back to my neurologist. I am lucky, I work at Mayo Clinic- but this horrible disease is still being figured out. It was the neurologist there who started me down this road- but I admit... you could have told me I was ingesting rat poison and I was so desperate for relief I would have happily taken it. I saw a different neurologist this time who took one look at my chart and said you HAVE to get off that stuff. He was super nice, prescribed me medical marijuana which made me totally cool in my kids' eyes. He did not give me a schedule and did not tell me that there would be moments where I would happily have laid down in front of a train... IF I COULD LAY DOWN AT ALL!!

The cannabis just isn't cutting it. I am going to write the doc tomorrow to see if they think Tramadol would help. I don't know how much longer I can hold out as I just feel really low and hopeless.

Oh I am lucky, the doc did give me FMLA for 6 weeks once the POT DOCTOR told me that the withdrawal would be horrendous. I really had no idea until I met with her. I think I have slept 3 hours or less since I started this fun last Friday. I have cut my Ropinirole in half but each tiny decrease has been so noticeable.

I am currently on 2mg. Question for you if you are still reading through my pity party... Since each decrease sucks- am I in the range to where I can just stop taking it now and suffer horrendously for a few more days rather than suffer super awful for two more weeks????

This Foundation has been so wonderful. I am the only one I know with RLS so it helps so much to see I am not alone. I am a nurse and was never even taught about RLS in school. I maybe saw it a few times on patient charts since being diagnosed and even knew what it stood for. Even my coworkers are like umm you get to be off work and smoke pot all day because of RLS? Really?? Luckily my coworkers are very supportive once they understood how this was pretty much ruining my life.

I have rambled enough.. although I think I am trying to distract myself because it is getting dark outside. Do any of you dread the sun going down because of the torment you know you will be facing in a few short hours?

Thanks for listening to me and for all of you who share your experiences here. It really has been the only positive thing going on this past week.

Best Regards,
Leslie

[stjohnh]

I have been slowly tapering off Ropinirole...

The cannabis just isn't cutting it. I am going to write the doc tomorrow to see if they think Tramadol would help. I don't know how much longer I can hold out as I just feel really low and hopeless.

Oh I am lucky, the doc did give me FMLA for 6 weeks once the POT DOCTOR told me that the withdrawal would be horrendous. I really had no idea until I met with her. I think I have slept 3 hours or less since I started this fun last Friday. I have cut my Ropinirole in half but each tiny decrease has been so noticeable.

I am currently on 2mg. Question for you if you are still reading through my pity party... Since each decrease sucks- am I in the range to where I can just stop taking it now and suffer horrendously for a few more days rather than suffer super awful for two more weeks????

...
Best Regards,
Leslie

Yes, you can stop. If possible, try to get an opioid, at least short term, for the final withdrawal phase. It is brutal otherwise.

[jacwillheal]

Hi Leslie

I can so relate to your post. Yes on dreading the sun going down. for the past 12-13 years, I have dreaded nighttime. And my husband can even take naps late in the evening and sleep like a rock by 10: 30. Good luck with the ropinerole withdrawal. I took it for about 2 years before augmentation. the neurologist I was seeing at the time never mentioned augmentation to me nor did she say anything about holidays. I read about holidays somewhere else - I can't remember where. It was before I found the RLS foundation. So my way of doing a holiday was just to stop, cold turkey. And suffer. I was in so much pain for 2 weeks, zero sleep and often became suicidal. My neurologist finally gave me gabapentin for the holidays but it didn't really help. I just felt like my head was stoned but my legs were experiencing something akin to electric shocks. And she also never told me to gradually taper the ropinerole. I finally made my way to the University of Washington Sleep Clinic where the doctor I saw there put me on methadone + gabapentin and has tapered me off of the ropinerole. I'm finally sleeping for the first time in years. Wishing you good luck and I agree with some of the other posts here, might want to try opioids. I never thought I would even consider that but so far it's changed my life. I also used cannabis at times -but only as a supplement to other meds. I would often smoke some if I woke up in the middle of the night. Good luck!

[Todge]

I did get Tramadol ordered today. My neurologist was really nice and said what I was going through was no joke and he called in my prescription and told me if it isn't enough to let him know. I have found there is a pattern. The night I decrease is horrible, the next night is blah and the third night is tolerable (i may even get 4-5 hrs of sleep!) I am down to 1.5 mg. It sure isn't getting easier. I also almost feel suicidal. Not actively or planning anything just if there was a speeding bus heading right towards me MAYBE I wouldn't jump out of the way. I still think it is too early to know if the cannabis will work alone once I am off Ropinirole, but I feel more equipped to face tonight with the Tramadol..

Ok.. I am really scared to death as usual and find my mood getting darker with the night sky, but I've made it this far...

Thanks for the kind words!!!!!

Leslie

[Margaret122maryL]

I, too, am scared to death. With the help of Tramadol, my taper wasn’t as bad as yours but the two weeks I have been off all pramipexole have been rough. I’m going day by day, telling myself that tonight will be better than last night. And last night, I did manage to stay in bed for 6 hours. My legs jolted frequently despite Tramadol but at least I slept in segments.

I get frightened when I read research that says some people cannot get off DA drugs completely. Then I remind myself that happy endings don’t make as good press as dire ones. When I read stories such as yours (and mine) I remember that most people who post here are in difficulty. Once the difficulty is over, they move on and we don’t hear about their success. I understand that—if I can conquer this problem, I might not want to be reminded of the traumatic battle by checking this board frequently.

Thanks so much to those who do keep watch, and give advice and encouragement. You’re a lifeline. We need to hear about success. I’ll try to remember that when I am past this ordeal.

[bwendt]

Leslie/Margaret,

Like many folks here on the discussion boards I went thru terrible augmentation from taking DA. I was up to 6mg of Ropinirole daily, with symptoms most of the day and not hardly getting any sleep. I was at my wits ends and yes laying down on railroad tracks was considered. I was fortunate to make an appointment with DR. B. (at the Stanford sleep center) who diagnosed me correctly and got me on methadone and pregabalin and totally off the DA. Getting off the DA totally was indeed a horrible experience but every day got a bit better and in a couple weeks I could finally get some sleep. That was 6+ years ago and while I have experimented with changing up my meds I have come back to an opiate and alpha-2-delta combination. Yes everyone is a bit different and you will have to find what works best for you but all the new literature (see www.rls.org/21Algorithm ) suggests that getting off and staying off DA is the best ticket. Working at the Mayo Clinic you might be able to find an RLS specialist that can help you thru augmentation. Also, I have found that being religious on staying away from known RLS triggers takes away some very bad nights. Is every night rainbows and unicorns - of heck no but life is better. Best of luck and please know you have hundreds of supporters and sympathizers.

bill

[Polar Bear]

You can get off the DAs, stay with it. Doing so is horrible but is so worth it.
I came off a 5mg daily dose and spent nearly a year doing so. I reduced very gradually and also had the support of Codeine. Once I was nearly off the ropinerole completely my GP also added Pregabalin. I came off without any horrible times by doing it so gradually and did it this way because I felt that I might not be able to stick it out doing it the quicker but more traumatic way.
The Pregabalin was actually added to help my peripheral neuropathy but had the added benefit of supporting RLS.

Please keep posting, we want to help you.

[Margaret122maryL]

Good news—I slept last night. I had an email consult with my GP, cited the Mayo clinic and she told me to go up to 200 mg of Tramadol. She also ordered the bloodwork for iron. I hope I can taper down on the Tramadol someday, but won’t even try for another few weeks. Life is good again. (Tramadol does have an anti-depressive component.)

Re: the iron. Two years ago,my oncologist (minor case of breast cancer, no chemo needed) ordered serum ferritin when I told her about the RLS. I looked up those old results yesterday and found that the serum ferritin was, as the oncologist said, within normal limits. But it was in the lower range of normal. According to the Mayo Clinic algorithm, they would recommend either oral or IV iron. I felt so vindicated! Like Leslie, I am an RN. After retiring from really active work, I took a desk job doing Medicaid reviews. One day, a co-worker saw Restless Leg Syndrome on a client’s chart and made a loud remark…”What a crock of $%#@!” She went on to explain that the diagnosis was made up by drug companies to sell drugs. I had a hard time keeping my cool when I disputed her opinion. The incident still sticks in my mind and makes me guarded when bringing it up with friends. Perhaps that is why I was so happy to see my serum ferritin was, and probably still is, in the low range.

[Todge]

Yay that you slept! Funny how even a few hours of sleep makes you feel unstoppable. Imagine how us RLSers would change the world if we all got 8 hrs of sleep a night?? We all have learned to be successful even going through life on 2-3 hrs a night. We would totally dominate the whole world... Imagine!!

I am so bummed. I had a horrible night and it was supposed to be the nicest night of the three that I spend on a particular dose. I am supposed to go down to 1 mg tonight if I want to stay on track but ugh. I have heard its harder and harder the less and less Ropinirole you take. So I am feeling demoralized. I don't think the cannabis is really working at all. I did take 50mg of Tramadol and 25 of Trazadone. I took some of the cannabis tincture a few hours before bed and I was still up all night. STONED as all heck, but almost a paranoid high. The legs were ok so of course my right arm took its turn to keep me up instead. Nice that they take turns.

Margaret,
I now have a desk job where I review MD documentation all day. Interestingly RLS is one of the diagnoses that you want to have in the top 25 DRGs that get submitted to Medicare because it has a moderate impact on mortality scores. I found that to be rather interesting. My colleagues have all been sympathetic because of that fact I think. But yes when I tell people I am on FMLA for RLS they all laugh but then say, "wait... you're serious?? I just don't think people can even imagine how bad this crap is.

[Polar Bear]

Just to add to my previous post that I did use Kratom to help while coming off Ropinerole and I still use it. It is illegal where I live, as is cannabis. However, I order it online and take my chance.

[Margaret122maryL]

Just wondering how you are, Leslie. I thought of you at midnight, when the slightest symptoms woke me, and I hoped you were making it through the night.

I find your THC experience interesting…it is available if I take a 45 minute drive over the border. A few moths ago, I did drive over the border and got the topical cream. It helped temporarily—but I wonder whether it was the pressure and massaging while I applied it, or was it the THC? Don’t know, butfrom what you say, I won’t be upping the ante to smoking or vaping—i don’t want to be stoned along with being miserable.

Your DRG info was good/bad to hear—the recognition is good, the impact on mortality bad. But at least it is recognized.

I am now doing so much better, though my list of medications makes me look like an addict—a combination of Tramadol ER and IR that equals 175-200 mg; also, zolpidem and maybe alprazolam. I gathered with friends yesterday, all of them supportive. I feel like myself again…even found myself humming a tune when I took a walk before bed. I do hope you reach this point soon.

[tvssnt468]

Thank you for your post. It is so helpful hearing other people's struggles trying to get off ropinirole!
I have been searching for a specialist for refractive RLS. I've been on ropinirole 1 mg twice daily for 8-10 years, and was up to 3 mg at one point. My work requires me to sit all day and even with another 1 mg (making total dose up to 3), I was miserable. I've had augmentation for at least 3-4 years. No one told me about the impulse control impact: excessive shopping, excessive eating, and augmentation.
I went to a neurologist last month in a movement disorders center, and he suggested getting off ropinirole by adding Gabapentin 100 mg and adding CBD dummies as needed. I told him I want to take it very slowly getting off since I've read the horror stories. I had previously tried Gabapentin when augmentation had occurred, and it didn't help at all.
I decided to make appointments with three new doctors, and the first was the one above. After that, I saw an excellent doctor in a sleep center. I have OSA and use C-pap faithfully, but my current sleep specialist is a pulmonologist who seems uneducated about RLS and transferred me to his PA, so it was time for a new one. The new sleep doc was very thorough with her eval, and even asked me questions I wasn't prepared for. (I've been doing my homework and trying many avenues for years, so I went in prepared). She recommended getting off ropinirole by adding 5 mg. methadone and taking ropinirole down slowly. Good plan, I think, having read the Mayo Clinic research of 2017. PROBLEM: my prescription plan denied the methadone. I read the plan's criteria for using methadone and I don't fit the criteria. I have not heard back from the new doc., but I'm sure I'm not the only person who's encountered this roadblock. I'm in NJ where there are strict regs about opioid use, so I guess that's part of the problem.
Have you or anyone else encountered this problem: not being able to get the prescription filled for methadone?

[Rustsmith]

Unfortunately, your experience with trying to get methadone isn't rare. Your insurance's refusal to pay isn't due to price. You might ask the pharmacy if they would pay without insurance. You might also look at GoodRX as an alternative.

You could also file an appeal with the insurance company. If you do, send them a copy of this publication from the Mayo Clinic Proceedings. It was written by many of the leading RLS experts because doctors, pharmacies and insurance companies have their head in the sand and do not realize that methadone can be used for something other than drug rehab. https://www.mayoclinicproceedings.org/a ... X/fulltext

[Todge]

Wow.. Just read back through my first post. This has been a brutal ride. I took my final dose of Ropinirole on 8/14 so 10 days ago. I feel like the withdrawal is leveling out, but boy there were huge chunks of time when I didn't think I would make it even another half hour with the restlessness, anxiety, panic attacks, and NO SLEEP! I see slight improvements mostly in how minimal my daytime symptoms are now (easily treatable with the cannabis.) Night times still suck. I take 50mg of tramadol at 4pm and 25 mg at 7pm. At 9 ish I take 5mg Oxycodone IR and 50mg of Trazadone. I am starting to write my doctor back about long term meds. I finally think the Tramadol's antidepressant effect has set in thankfully (knocking frantically on wood but its been 4 days without a panic attack, and my overall level of anxiety lessens each day. I am not quite so suicidal and actually laughed and joked some today.

So... Thoughts... Tramadol for my depression/anxiety/RLS... but is it safe to take with the Tramadol? I am a bit scared of causing respiratory depression so that is why I try to take it early. I don't think the Oxycodone helps my sleep much at all.

What do you wise folks out there suggest for the fewest meds to treat RLS, Insomnia, & Depression/Anxiety?

[Rustsmith]

Todge, those are questions best posed to your doctor. Questions about risk of breathing problems on tramadol, or any other opioid, are something that vary from individual to individual. The risk is greater if you also are at risk of having sleep apnea. There are also indications that the risk increases with altitude, but unless you live in the mountains (or on the side of one like I do), then that wouldn't be as great a factor.