First time poster here! I'm from North Mississippi and I'm needing advice. I have had RLS since 2010 and once I finally got the meds right after diagnosis, I have had very little issues with it. I first tried gabapentin with no relief, then Mirapex with no relief, then Requip worked like a charm. I have occasionally had to up my dosage and I am currently at 6 mg. I have only had to see my Nurse Practitioner all these years because I've really had no issues until now. And now I AM HAVING ISSUES!!! I have no doubt that the Requip has completely stopped working and is now intensifying the RLS. I am having symptoms as early as noon most days. One day in particular I decided to take Requip at 3 pm which I had never done and I was shocked at the symptoms. I couldn't stand still, I sit to work most of the time. I was twitching and twisting and the drive home was terrible at 5 pm. I could barely keep my foot on the gas pedal. So I bring all this up to my NP, she does bloodwork and suggests a referral to a neurologist. I've been waiting 6 weeks and still have no appointment. Once my NP's office finally sent the referral, the referral person is out til Monday at the Neurologist. In the meantime my NP prescribed Klonopin to help but all it does it make me dizzy when I am up pacing the floors at night. I tried to slowly cut down on the Requip but I just stopped all together because I was miserable. I have not had over 2 hours of sleep a night now for 6 weeks. I feel like a Zombie and just dread the afternoon/late night hours. When I mentioned my iron levels to my NP she states they are normal, however my ferritin level is 20 and my saturation is 18%. I have no idea what to do. This is interefering with my sleep, my job, my marriage etc. Any suggestions?
Getting Desperate!: First time poster... - Restless Legs Syn...
Getting Desperate!
Welcome to the forum. You will find lots of help, support and understanding here
You were suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
6 mg requip is one and a half times the maximum dosage.
You should never stop cold turkey like that. I suggest you go back up to the 6 mg requip and slowly wean yourself off. Reduce by .25 mg every 2 weeks or so. You will have increased symptoms although not as bad as you are having now. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Gabapentin or pregabalin is the first line treatment for RLS. I suspect you didn't take enough or took it in the wrong way which is why it didn't work. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off requip 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 as the peak plasma level is 2 hours. 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)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. You ferritin is very low and your transferrin saturation is below 20% . Ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further. But I would insist on the transfusion.
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...
Meanwhile 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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Hi Sue, you are in the US too, right? Do you know a good neurologist in Northern Missisippi for RLSsufferer4? At least she should become a member of rls.org and see if there is a quality care centre more or less nearby. As we know, she needs help from a knowledgeable doctor. Or one that is willing to inform her/himself and follow the Mayo Clinic guidelines. RLSsufferer4, reducing the ropinirole will help but is not easy. And getting your iron levels up will very likely help a lot. Taking iron pills will help but is usually a slow process. Hopefully you can find good medical help and maybe get an iron infusion.
Hi LotteM : as far as I can see the nearest RLS QCC to North Mississippi is the Vanderbilt Sleep Disorders Centre in Tennessee:
vanderbilthealth.com/servic...
But SueJohnson may well come up with a nearer RLS expert: I get a bit lost outside of the mid west or the east coast!
Good morning Sue. I forgot to mention, I have 10 mg of Norco that I take sometimes to try to help. Just curious, if I have been off of Requip for this long, cold turkey, what would the benefits be of starting it back? It intensifies my legs worse than just taking the Klonopin and Norco alone. I'm still not sleeping either way. I'm exhausted and scared of falling asleep at my job. I stand as much as possible, but I feel like I'm in a trance most of the time. Also, what are your thoughts on Sinemet?
Sinemet is just another medicine acting like a DA so you would have the same problem.
The advantage is that if you don't do anything, you will be having the same symptoms for months, unless you are able to get a strong opioid, much stronger than Norco to stop the symptoms. Since you had such bad symptoms when you took it at 3 pm (I assume you took 6 mg), you may even need to go up to 6.25 mg to get stabilized. When you start reducing again you can always buy an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
Welcome: ropinirole (Requip) like pramipexole (Mirapex) and rotigotine (Neupro) is a dopamine agonist, which for most works well for a time - sometimes years - but eventually leads to a worsening of symptoms - a process called augmentation. Your iron levels are also too low: e.g. the quoted 'normal' range for ferritin is wide, but most RLS sufferers benefit from higher levels - above 100, even better close to 200. Most doctors and neurologists are ignorant/out of date about RLS.
You will get assistance from people here who have successfully weaned off a dopamine agonist and moved on to modern treatments - gabapentin (Neurontin), pregabalin (Lyrica) or a low dose opioid. You will probably see a response shortly, but meanwhile you could search for posts by e.g. Joolsg , SueJohnson ,Madlegs1 .
@LotteM As LotteM suggested you should go to rls.org and join. It only costs $40 and is well worth it.
Where do you live in Mississippi? If you tell me I will check and see if I can find a good doctor for you.
I live in Pontotoc County. It is a small town. I usually have to go to Tupelo or Oxford MS. However, I'm willing to go further for someone who can fix this. Memphis, Birmingham etc. I am having to go to Birmingham for a hernia specialist because there are none anywhere near me.
Dr. Megan Edwards 2908 S Lamar Blvd Ste 100 Oxford, MS 38655 phone 662-281-0112. Ask her if she follows the Mayo Clinic Updated Algorithm on RLS. She also does telehealth appointments. She is a neurologist and has a high experience treating RLS.
There is also Dr. Thomas Emig, Dr. Thomas Patton and Dr. Arturo Otero at the Alabama Neurology and Sleep Medicine 100 Rice Mine Rd Loop #301 in Tuscaloosa, AL phone (205) 345-3881 They do telehealth so you probably won't have to go there except for the first time. The only question is whether they would be able to prescribe in your state but they could probably send a letter to your current doctor. All 3 have a high level of experience. Again ask her if he follows the Mayo Clinic Updated Algorithm on RLS.
If you do see one of these, please let me know what your experience is so I will have it for my records.
I agree with all the other comments. Follow SueJohnson advice and go back to 6mg Ropinirole and then slowly start reducing. Push for an iron infusion. Your serum ferritin is way too low.Most of us have been on DAs and suffered augmentation and had to go through withdrawal. It will be hellish BUT well worth it.
Once off all dopamine agonists, your dopamine receptors will settle and your RLS will become less severe and revert to night time. The iron infusion might even relieve all symptoms once you're off Ropinirole. If not, alternative meds as suggested by Sue are available.
Please consider seeing a pulmonologist or sleep specialist. These doctors know the most about RLS. Sorry, to hear about you having to go thru detox from the dopamine agonist. I’ve been thru it and yes it’s hell. But there is light at the end of the tunnel. I was given a small dose of an opioid (specifically Tramadol) and it helped somewhat with the DA detox. Beware of Tramadol for long term use .. it also caused me to experience augmentation
Good luck.
My RLS was awful at 30. Requip helped for about 6 years but then I started to augment. I was put on the Neupro patch. I didn’t really come down from the requip at all just started using the patch. The problem was that the patch was 6 mg!! Eventually I had to reduce it. I saw a doctor who tried to take me off neupro cold turkey. I lasted 6 days. No sleep. I took gabapentin to help all it did was make me dizzy while I constantly paced the floor until I fell. I became desperate, I had suicidal thoughts. Eventually I went back on the patch. It helped a little but I had a long way to go. I flew to Los Angeles to see a doctor that is highly recommended here. (The flight was almost unbearable) He put me on Buprenorphine and that together with gabapentin helped a lot. I wouldn’t send anyone to the doctor in LA though. Although he helped he eventually showed his true colors and began to show zero empathy. Even as I tried to withdraw from the buprenorphine and had similar issues…couldn’t sleep, he refused to believe me and wouldn’t even set up a system to ween me off the drug. Finding a good doctor is so helpful. The withdrawal from a DA is no joke. It was impossible to go cold turkey. I almost ended my life. I’m 56 now. I was forced to retire early. I’m living in Eastern Europe and have a very good neurologist in Greece. I’m trying to live now because for me, RLS has been a constant since before the age of 20. At first it would occur once a week, then 3 times a week. By the time I was working full time it was every night. I know I will probably augment again. It scares the hell out of me. But for now I’m living with it. Some nights the neupro doesn’t work so well. Thank god for gabapentin. It has helped a great deal. Following the recommendation of Mayo Clinic helped immensely. This group has also helped me in so many ways. Thank you to all.
Hi, I'm sorry for all the suffering you have been through. I also suffer with RLS and have had it for over 30 years. I now live in Greece but havent found a good neurologist. If you know someone in the Athens area could you give me his or her name Thanks
My doctor is in Ioannin. Im traveling at the moment but when I get home in the next few days I will send it.
Opioids.
After hell with RLS for years. Ever since I can remember I think I was 12 but the doctors always would say it's growing pains or it's in your head and there's nothing physically wrong with you I dealt with it my whole life I'm 48 now. Only within the past maybe 5 or 6 years of have I had relief from it and been able to tolerate it. I tried requip I've tried gabapentin they would work for a short period of time then would I still would have breakthrough pain and daytime symptoms so I started taking Mirapex and I started with 1 mg at a time and right now I've worked my way up to 2 mg of mirapex at bedtime and then 2 mg ER Mirapex in the mornings and it treats my daytime symptoms without making me really drowsy and I can still function and with this combination. I've had relief from the pain and all that comes with it. And of course what works for one doesn't always work for everyone but this has helped me and I've tried everything honestly I've had iron infusions of I've tried narcotics I've tried everything you can think of this has been the one thing that's helped me.
I'm glad Mirapex is working for you but do be aware of the symptoms of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. If you are taking 2 mg in the morning and 2 mg at night that is 4 mg total. You are already eight times the maximum dose which is .5 mg. So it seems like you are already augmenting. I find it hard to believe a doctor would start you out with 1 mg when the usual starting dose is .125 mg Gabapentin probably didn't work for you because you didn't take enough or you didn't take it in the right way,
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 especially in those quantities at Https://mayoclinicproceedings.org/a...
When you realize you are augmenting and want to come off it create a post and we can help you.
If you are still taking celexa, it makes RLS worse for many. There are only 2 safe antidepressants - Wellbutrin and trazodone which also treats anxiety and insomnia.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Sue, I found that trazodone significantly worsened RLS for me. Comparatively, safer than other antidepressants but nonetheless I’d be careful with it. I only took 50mg to help fall asleep.
That just goes to show we all react differently. You are the only one I know of that has had this happen. I'm so sorry.
I had the same issues people said I had growing pains and mine started as a child as well. I thought I was crazy after awhile. The only thing that helped was tying tube socks around my feet crossway until it cut off the circulation. Imagine aN 8 year old doing that!
I would sit on my legs until they were numb. It was the only relief I could get.
If you have indeed stopped the Requip cold turkey - RLS will be most severe. All this pain and suffering when your problem might have been low iron stores all along. Sue's and others advice above is spot on. Stay strong - this ain't easy at all!
It took me 6 months or more to fully wean off Roprinirole. Worth it though. Went through two years of ineffective treatment, all the usual meds, also tried massage, acupuncture, did two rounds of iron infusions, and nothing worked. Finally got a prescription for methadone, and a small dose of methadone turned my RLS off like a switch. I am so grateful.
Thank you for that comment! Your comment explains why people with RLS augment on Tramadol like I did. It also explains why it was so difficult to taper off it. What a complicated drug. Will never take that again !
nothing
i used to take the methadone. I cant get it anymore in Europe :(.
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