Just got back out of the psychiatric hospital for the 3rd time in 2 years. Take 4mg ropinorole at night. Had RLS since the age of 12, I am 46. I am new to this forum but have been a member of the old Nightwalker board in the early 2000's . Don't know if still exists. Weaning down again, but doing it at home this time. I have had it so long it is my entire body. Without Ropinorole I don't sleep, cant even sit down or lay down. The longest I was awake when cold turkeying off was 8 nights and 9 days without sleep. Until they brought the needles and put me down because I was shouting I am the master of the night at the enemies in the air vents. Every time I have purged Ropinorole their has been nothing that provides relief of my RLS and my full body movements are worse. My neurologist also says that possible Parkinsons because during the field tests my results are getting worse. This was off the ropinorole so they could get a base line and rule out augmantation. The thing is I always have to get back on it, then increase, then the pshychiatric hospital. It is a torturous cylcle that I dont see an end to. The only reason I have strenght to endure is I am the primary care giver for my mother whom is now parapalegic due to ALS (lou gerrigs disese). I just want to say hi. And I have been in this world and dealing with this for 34 years. And have 3 extended stay vacations in the looney bin. Lots of experience..... I want to help. I want to make sure other people dont have to go as far as I did before safely weining off. Lots of typos sorry typing is hard, body dosent stay still. Much love walkers of the night,
Hello: Just got back out of the... - Restless Legs Syn...
Hello
google carnivore mental health success stories, you may be surprised
thank you
buprenorphine is brilliant for RLS also Dr Glen Brooks uses it for depression .
No one has tried it for Parkinson . I have actually reached out to the
Michael J Fox Foundation to tell them of Buprenorphine success for RLS it might just stop there tremors. We don’t know until someone trys.
CBD oil is proving helpful for some patients with Parkinson’s.
If you can try the Buprenorphine 2 mg first
thank you
Oh it's the Rop - that horrible drug that loves you then destroys you! It was waved at me numerous times "this is the only thing that will work", but thanks to this forum I discovered that I was Iron deficient and quickly turned around Severe RLS. Good luck - stay strong!
“All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.
From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.”
― J.R.R. Tolkien, The Fellowship of the Ring
thank you
Gosh I’m sorry to hear about your torture. You might have the record with 8 nights and 9 days! I’m also sorry about your mom. It appears that you have a full load. Are you now completely off of ropinorole? As tempting as it may be to find relief, don’t go back on any DA!! The torture of augmentation is inevitable for you. I was also told by an expert in the field that DAs cause permanent brain damage. Yet another reason not to go near that stuff. I like Shumbah’s suggestion for dealing with your pain. Possibly low dose methadone would work also. It works for me. My symptoms have almost been eliminated with methadone.
Hi discgolfrules, and welcome. It sounds like you have a lot going on for you to deal with. All the best with weaning off ropinirole. If you haven't tried them already buprenorphine and other opioids may help with withdrawal and rls symptoms. But of course this is something to run by your doctor/neurologist.
Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. To come off ropinirole, never go cold turkey as you discovered. The usual advice is to reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Gabapentin or pregabalin are now the first line treatment for RLS. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you 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. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Since you have high blood pressure you are probably taking medicines that make your RLS worse. If you list all your medicines and OTC supplements here I can tell you whether they make RLS worse and can sometimes give you a safe supplement.
Hi Sue- my husband takes Losartan for high blood pressure, for about 15 yrs now, and the PLMD that also causes bruising and pain afterward is getting worse. We are thinking it might have started with this med but can’t be sure. Any thoughts on if Losartan could be to blame? Or perhaps exacerbating it? Appreciate your insights on this forum.
Losartan is probably OK. At least one person reported it didn't make his RLS worse. However it can increase one's potassium so he probably should have that checked
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Hi Sue, are we allowed to recommend products on this forum? Ex... a good topical magnesium spray ? Thks,
I have seen others do so.
Could you share some of the mg sprays others enjoy please-I'm looking to purchase one to try.
Sorry - I don't know. Why don't you make a post with that question.
If you have Parkinson's, ropinirole and other dopamine agonists are used to treat it, but since you suffer from augmentation, there are other treatments you could take instead. See mayoclinic.org/diseases-con...
thank you all for the wonderful support. It would take a book to explain my treatment over the years. Name it, did it. Diet, iron, magnesium, opiod treatment was successful for two years. Then it wasn't. Vitamin, especially the B's, injections. after opiod treatment went to mirapex, worked for a short time, mostly made me sick. finally rop. in 2006. saved my life. started .50. Then over time increase, augmentation. Have cold turkeyed once under medical supervisio, do not attmept. Honestly I dtill don't know if some of the narrative is real or not, it was too crazy. Weined under medical supervision, very slowly. Did the gaba- slow ropinorle drop down. Now doing it a home, safely and slowly. Things are better and combined with coping mechs. and my knowledge and experience of what this is enables me to maintain calmness through out this process. In other words, the first time you have no clue what is going on. The second time you have a better idea but its still tricky. The trick is to not try and listen to make sense of it, because that what our brains do best, fills in the blanks to try to create someting that it can make sense of. RIght now all my focus is doing the drop down and taking care of my mother. My neurologist is aware of everything, I get my blood tested regularly. The problem is when I am off the rop. my symptoms are worse. And we are trying to figure out why. I don't voluntarily go back on rop. They put me back on it becauase nothing else stops the shocking (that's what I call it) Or the the invisible giant. Thats how I descibe it . Like an invisible giant picks me up and shakes me until he stops. The more tired I am and more sleep I need, the longer he shakes, and their is nothing I can do until it stops. Johns Hopkins is lloking into the mechanism and not just the symptomology of the flow and regulation of dopamine. So I am hopeful they are close. Thank you all, when I have more info will share with group
So sorry to hear about the torture Ropinirole has visited on you. Without meds, my RLS would be very bad.I doubt it's Parkinson's, you just need to find a decent doctor who can safely get you off Ropinirole without the other doctors putting you in a psychiatric hospital. Days without sleep and constant, severe RLS will cause depression, psychosis & suicidal ideation.
Those of us who have been through Ropinirole withdrawal know how traumatic it is.
If you find the right doctor, you could safely get off Ropinirole and onto alternative meds.
First you need to ensure serum ferritin is above recommended levels and that any meds that worsen RLS are reviewed.
Start by looking at the Mayo algorithm which is the latest, best practice for RLS.
Find a good doctor where you are.
I presume you are in the USA ( ALS is known as MND here in UK) and all the top experts are there.
I'm sorry to hear about your mother. ALS is a cruel, heartless disease.
There is hope for you. You can get off Ropinirole and find a doctor who will prescribe pregabalin, gabapentin or a low dose opioid and your intense, severe RLS can be controlled.
thank you so much. It's gonna be some time. I am dropping slowly, with 900 mg gaba
Take it very, very slowly. No more than 0.25mg every 2 to 3 weeks. The gabapentin may reduce the withdrawals but split the 900mg dose as anything over 600mg isn't well absorbed. Take 300mg 2 hours before bed and 600mg at bedtime.
Once you're down to the last 0.25mg you could increase the gabapentin. Average dose is 1800mg for RLS and it will hopefully work fully about 2 to 3 weeks after your last dose of ropinirole.
I had to use tramadol and cannabis to get through withdrawal. Sadly gabapentin and pregabalin didn't work for me. Nor did Oxycontin but finally found complete relief with buprenorphine.
I wish you strength. Let us know how you get on.
thank you so much, taking it slow. will look into the buprenorphine
Another one to try after you are off ropinirole is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...
Thank you I will ask about that when I get down the rop. going slow with gaba added.
been there, my dear; that experience can destroy any remnants of self esteem. The doctors finally found a good combo that works for me most of time: Celexa for depression, 1 mg xanax to relax before bedtime, Restoril, Benadryl at pm and Zyrtec am for allergies. 500 mg magnesium at night for RLS, along with herbal concoction of melatonin and other herbs; and……..various other supplements. Approved for disability about 20 yrs ago, but now at 76 on SS. Keep your faith in God and don’t give up til you find a doctor that understands. Lack of quality sleep causes major mental problems and the advancement of MS symptoms. 🙏🏻🙏🏻🙏🏻
You are lucky because you are taking 3 medicines that make RLS worse for many - Celexa, Benadryl and melatonin.
I am blessed. Through the years it seems that most meds have the opposite affect on my mind and body, or no response at all. I do have RLS and PLMD if I take less than 400 mg quality magnesium citrate capsules before bedtime. (Tablets aren’t effective for me due to stomach issues)
Thank you for response. xanax is torture. Makes it worse, and makes it so I can't keep moving, have to keep moving. Same with Benadryl, andy benzos, sedatives, even muscle relaxers are all torture. But I sincerely appreciate your time to type. looked into the beno whatever, saw was suboxone and not interested. did the opiod route for two years, and onmce had to increase, stopped immediately, didn't want to depend on opiods. Some say the suboxone is even worse. Dont'know what next step is yet.
You poor poor girl , I can completely relate, I also can have severe days and nights long rls,If I ever manage to drop off to sleep I'm awoken after no more than 10 or 20 minutes just dozing.
I get it so bad it sometimes turns spastic where my legs are so severely affected they jerk on there own which can send me crashing to the floor dur to no control over my limbs.
I have also had it since I was a child and it's just got progressively worse, I'm 56 now.
Also like you I've tried everything in the book and a lot more besides, the only relief I've ever got is from opioids which obviously now I'm dependant on. There are no winners here
My heart goes out to you.
Alyson 💜
thank you allyson. Not a girl, lol. Unless I messed up in my profile. Will double check. Sorry to hear about the opiates. Not sure where gonna go after my ween down. This is 3rd time of the ropinorle shuffle. not sure where going next. If I can get down to .5 and 900 mg gaba and it works, then I'm ok with that. Nothing is torture. Opiates worked for 2 years. Just because I don't want to be on them, dosen't mean I won't have to. Right now I am just doing all I can to ignore the voices and get this stuff out of me. Not doing cold turkey again, that was insane. Not sure if I can physically or mentally do it again. I stay with people at all times, never alone or isolated. And the TV is always loud, so far so good. The only problem is through all 3 experiences, the narrative has continued and I still find myself guessing if it could be real or not, even though I know it's not. HArd to explain. They are not nice, they threaten my family and say such horrible things they are going to do to my mother, whom in which is defenseless. Parapalegic from ALS, on home hospice now. Already lost her twice, the first time I revived her and called 911 in our hotel room while we took her on her last vacation, depsite her DNR. That was 7 months ago. Then again in the ICU, but they sent her home for hospice care, she was supposed to go that night. But we took her off all her meds, except comfort. That was 3 weeks ago, now she is off oxygen and back in normal routine, sorry so long, don't know why trailed off about mom. Tjanks everybody this board is helping so much and keeping my mind busy so I don't try a listen in and spin out again, much love.
Much love back.. you trail off all you need if it helps. You're not alone hun as much as it feels like it at 5am when you want to stream, cry and call it a day.
Xxxx 💜
Not what you're looking for?
You may also like...
Hello.
Hello
Hello
Hello. I’m new here.
Hello! Newbie looking for advice and connections
Related Posts
Hello and any advice for withdrawal?
Hello and thanks for having me in this group
Hello all
Hello! New memberModeration team
