It's good to be alongside like-minded sufferers. I've had RLS all my life but this past year or so has been a constant nightmare of epic proportions. I tried homeopathy, massage, magnesium, both supplements and gel, iron supplements, all to no avail. My GP put me on Ropinirole a few months ago and it seemed to work well at first and even put me to sleep. However, I'm up to one and a half mg a night and the sleeplessness is awful with the RLS beginning again about 3am and off and on throughout the day. As an old lady with multiple comorbidities and a dicky ticker, cardiomegaly, diabetes, to mention but a few. Could anyone kindly enlighten me as to whether the Ropinirole could be giving me horrendous palpitations which not even Diazepam can calm? I have checked all the interactions of my meds online and nothing major pops up but, as we all know, everyone is different, and one of the greatest mistakes the medical profession makes is to treat us all the same when one size does not fit all. Doctors these days are not trained to cure, merely to prescribe, and it is killing hundreds of thousands a year so I do not wish to add anything else to my 'drug repertoire' if I don't have to.
Any help would be deeply appreciated. And, while I'm here, may I take this opportunity to wish everyone a very Happy Christmas and a most prosperous New Year. Sláinte!
Kefira, all the way from Bonny Scotland.
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Kefira
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Welcome to the forum. You will find lots of help, support and understanding here.
You are suffering from augmentation. Your doctor should not have put you on ropinirole. 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. That means you need to get off it.
Since you are suffering now I suggest you add .25 mg and wait until your symptoms settle. However don't be tempted to stay on it as you will augment quickly again
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.
Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After that for several weeks 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 split the doses with pregabalin)
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 (it is OK with pregabalin) 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 (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 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.
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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. 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, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thank you for that helpful advice. After the Festive Season, I shall go back to the doctor's and have a long talk about a few things. Sadly, I cannot stand as I am severely crippled with spinal stenosis, squashed nerves, arthritis, bilateral sciatica, all of which apparently can exacerbate the RLS. I'm waiting for an epidural and spinal steroid injections and pray they help some. I make artwork and research all day, listen to music constantly and sometimes watch a movie at night, so keep my mind is kept very busy indeed, never feeling any boredom or loneliness. I also have a neck massager for my spondylosis, which I can use on the legs. Sadly, I only have a wetroom with a shower and seat, no bath. I already use magnesium glycinate, take all my vits religiously, plus supplements. I massage my legs at night with magnesium gel and then red vine and horse chestnut gel which temporarily soothes. I have already talked (the other day) to the Physician's Assistant, yes, that's correct - not even a lowly GP can always be seen here. They have a tendency to avoid you once their impotence become evident. I was referred to a Frailty Team who wanted to get Social Services involved and I told them to politely bu**er off. I may be old but I am far from senile and I loathe any interference by the state. Their incompetence has already almost seen me off a few times of late and the cardiologist had to intervene and stop some of my meds when I ended up in hospital in Spring. Perhaps, I'll ask to see a neurologist for the RLS and I also have dyskinesia?
Many thanks for your help. I'm off to bookmark this page and, if necessary, show it to my GP - she is sick of me questioning her about everything which is why I usually have to talk to the PA these days instead.
Oh my you certainly have a lot of problems. I can sympathize with you on spinal stenosis and sciatica because I have it too although not as bad as you. The gabapentin or pregabalin make help a little with that as it is used for nerve problems.
There's no point in showing the doctor what I said as s/he will discount it. Print out sections of the Mayo Algorithm.
Another source is the RLS-UK (Https://rls-uk.org).Under Understanding RLS there are several things you can show your doctor: Augmentation & Rebound & Treatment of RLS Under Useful Resources you can download the Dopamine Agonist Withdrawal Schedule.
What medicines are you taking for your various problems?
Hello Sue and thank you once again for the stellar advice. I am now at my son's for Christmas and New Year but shall download the material when I get home. I have researched this myself over the years and I tried telling my doctor about the augmentation but she poo-pooed it and I was so very desperate at the time with it all on top of the pain, heart and dyspnea troubles I just accepted. In retrospect I ought to have been my usual argumentative self. Lesson learned. I am on Levothyroxine, Famotidine, Lisinopril, Trelegy Ellipta, Salbutamol, Tramadol 2 a day because they suppress my breathing but doc says to take 8 a day. Diazepam when requred and Fluoxetine down to 2 a week now. I also have sleep apnoea and use CPAP machine. My Pelvic Organ Prolapse can't be treated as I am unable to have general anaesthetic. Also have duplex kidney with CKD stage 3. A few other things but these are the worst. I didn't win the health lottery that's for sure. All the best.
Famotidine is a H2 antagonist antacid which interferes with the absorption of iron no matter when you take it. After your ferritin is checked if you need to take iron you are better off with Gaviscon Advance which you can get on Amazon.
If you end up taking pregabalin and to a lesser extent gabapentin with your Lisinopril watch out for symptoms of angioedema.
What are you taking for your diabetes as some medicines can make RLS worse
You should check with your doctor if you are taking turmeric since you are taking an antacid and if your take medicines for your diabetes. It can also reduce the absorption of iron if you end up taking iron.
Kratom and other opioids including tramadol can cause adrenal fatigue. Ask your doctor to test all adrenal hormones.
Cannabis can actually help with symptoms of kidney disease but obviously don't smoke it because of your lung problems.
With kidney problems gabapentin and pregabalin doses should be kept low and patients carefully monitored for adverse effects. One should take care with magnesium supplements as they can cause excessive accumulation of magnesium in the blood and even creams get in the blood. High calcium levels in the blood are common and may make RLS worse. Do not take potassium supplements. Iron status should be checked and managed with intravenous administration of iron tablets. Methadone and buprenorphine are best. Oxycodone and hydromorphone can be safely used, but adequate dosage adjustments are required. Morphine and codeine are not recommended.
Time your medicines so that you take your thyroid medicine at least 4 hours from any medicines that contain aluminum, calcium (or calcium rich foods), iron and magnesium (or magnesium rich foods). DAs like pramipexole inhibit TSH secretion so brings down thyroid hormones. Conditions associated with hypothyroidism can make RLS worse so want to bring it up. People with hypothyroidism may have prolonged and exaggerated responses to opioids.
Hello Sue, yes, I have researched much of what you suggest and was actually taken to A&E earlier in the year with bradychardia and dyspnea. Turns out I had very low magnesium and was kept in overnight on a drip and the had a loop recorder implanted in my chest the following day. The cardiologist stopped the lansoprazole and doxazosin and put me on Famotidine as I have GORD. I was told to take the lisinopril at bedtime instead, having previously been on both for many years. I have always taken magnesium at night so was somewhat alarmed by my shortage. Don't take any calcium incase of build up. I take turmeric sparingly these days and more ginger instead. With the arthritis all over my body I try to keep the inflammation down with natural products as much as possible. I am aware of the cardiac side effects of the gabapentinoids. I'm on metformin for diabetes but it's pretty awful at the moment as my doc stopped the gliclazide a few months ago because I'd had a couple of bad hypos. I had some left over so take one now and again when sugars too high. I shall ask for some more but not two twice a day as I'd been having. Re the kidneys, I'm aware of the dangers, especially at my age, 70, so shall be careful. Trouble is getting a doctor to listen. They are always annoyed with my questions and research and they seem to just switch off. Rampant cognitive dissonance. The further the education when young, the deeper the indoctrination. These people are trained to believe what they are told without question and that attitude is killing millions across the world every year. Shall keep pushing, however. I shall take on board all you have said about specificity of timing, it's deeply appreciated. The advent of petroleum based allopathic drugs has been an unmitigated disaster in too many instances. Well, Sue, I must go as my family are back from shopping now. Thank you and Merry Christmas. X
Kefira, likewise, the sciatica, oesteoarthritis, spine issues all seem to give a trigger for my RL to start or ramp up. You have a strong attitude! All the best for resolving this exhausting condition.
Hello Rayme so sorry to hear you suffer greatly as well. Yes, the problems do make it worse. Thank you kindly and I wish the same for your good self. Merry Christmas.
Dr Colin 0'Leary is a neurologist in Glasgow that Scottie99 saw - no idea how satisfied he was nor what medicine he prescribed so message him. If you see him let us know and how satisfied you are with him and also what Scottie99 says.
I do NOT recommend Dr David P Breen in Glasgow nor Dr Kevin Fernando near Edinburgh..
Hello Sue, I'm from Scotland but now live in Kent, just up for a wee while. I find much of the treatment down here to be somewhat erratic and ofttimes simply awful. Trying to find a good doctor is like a mythological quest. However, after talking to my GP over the phone yesterday I am to be getting pregabalin and I also asked for the blood tests. She was none too amused and still insists ropinirole is best for rls. (She told me just to stop altogether, just like that and I queried the sense of it as one should really wean off it.) I had to tell her I disagreed. Hopefully, once I'm back home next week, the critical care nurse can come up early one morning to take the bloods. But, it won't happen quickly, nothing ever does in the SE. Apparently, rls is not on the things to learn about in British medical schools. About time it was. It is Hellish and life-destroying. I am concerned about the the pregabalin as it's a very dangerous drug for people like myself. Praying I just need iron and perhaps only a small dose to keep it at bay. Hope you are enjoying your Christmas. All the very best. I'm off to read over your post about timings so I don't make things worse. Many good wishes and thanks.
Kefira--- you are just another one of us auld ones who are being shamefully treated by the medical authorities, who should be doling out kindness and sympathy and correct treatments at this stage of our lives.
If you feel up to it, do consider writing to any authorities who have jurisdiction over you medical team.
You could also sue or threaten them for wrongful treatment .
It is disgraceful how we are being cruelly mismanaged.
And it is happening far too often , according to the tip of the iceberg that we observe on this site.
All the very best on your journey forward.
You have got great advice from Sue.
She rocks! Along with many other dedicated volunteers here.👍💚🍀
Hello Madlegs1 good to hear from you. Yes, it's abominable how we are treated. You should read the book, "They Want To Kill Us" by Dr Jack King, it's most illuminating. I've known about the agenda to get rid of as many elderly as possible for a very long time but the medical profession stick together like glue. Since the planned pandemic, they have shown their true colours however and all the honest doctors were severely penalised for not going along with the official narrative. God alone knows how many were and are still being done away with on purpose. Thank you for the legal mention, I've been on the verge before but knowing others are aware gives one more oomph to perhaps do something about it. We may be auld but we are not stupid or past it. Merry Christmas.
Welcome Kefira,Sadly, you have been let down by your GP.
Ropinirole is no longer prescribed by anyone with basic knowledge of RLS and these dangerous drugs. Ropinirole and similar drugs are now relegated to end of life scenarios because of the two MAJOR complications they cause. The first is that they are the only category of drugs that actually makes the disease much worse ( iatrogenic worsening known as 'augmentation'). Secondly, they cause Impulse Control Disorder ( gambling, overeating, impulse spending and hypersexuality)..There have been hundreds of successful UK legal actions against doctors for failure to warn of the VERY high risk of ICD.
You're RLS is clearly linked to your spinal problems.
Gabapentinoids or Buprenorphine would be better options.
So tell your GP about the palpitations and tell him you want a different med.
Hello Joolsg thanks for the message. It seems you all know the dangers of these drugs and I find it heartening. I knew before I accepted it but was a tad in denial as I felt I couldn't go on much longer what with one thing and ten others. I had Chorea as a child and was left with dyskinesia and rls but they only every manifested themselves when I was under severe stress or exhaustion. The spinal problem progression has indeed made things an awful lot worse. Thankfully, I'm not suffering from the mental side effects. The other drugs will be mentioned and I shall tell them to alter my treatment. Am very aware of iatrogenic illness not only from drugs like ropinirole but mis-prescribing and incompetence - it's the third highest cause of death in the US. I have to be careful because of the heart and lungs however so can never take large doses of anything. Merry Christmas.
I can't add to the brilliant advice you've been given.Just wanted to cheer you on .You're obviously a warrior woman to cope with all that you do.I hope you find relief post augmentation. You really deserve it.If you can afford it,I would pay privately for an initial consultation with a neurologist or sleep specialist near you.If you say where you live someone on here may recommend one.Huge good luck.You are an inspiration!
Hello Jumpey, thank you for the kind words. Life hasn't been easy but I feel blessed to still be here. It's been delightful to come across such a fabulous bunch of people and hope the New Year brings everyone renewed hope and strength if not cures. A neurologist is certainly on my list of things to consider. Merry Christmas.
I hereby nominate you for the bravest and most cheerful person ever to be dealt such underhanded blows by illness and an inept medical system. Could you trade out your Tramadol for low-dose buprenorphine as the latter seems to be the most effective opioid for RLS sufferers?
If you prefer baths, might you avail yourself of a blow-up mini-pool, using a cushion to sit on?
I think in God's eye you may have bested Job for a seat at His right hand. You have certainly impressed me.
Hello TheDoDahMan, What can I say? Your kind words have moved me very much indeed and I thank you for it. Re. the tramadol, it's for my severe arthritis not the rls. I've had to cut down over the years because of other health problems and take one at a time with paracetamol. I can't take ibuprofen regularly anymore but sneak in the odd one when things become unbearable. Until about 11/12 years ago I used to occasionally get morphine but it stopped me breathing so I had to stop it before it stopped me. Unfortunately, I live in sheltered housing now so can't get an inflatable pool but what an inspirational idea. It is to be hoped the upcoming epidural and steroid injections for my spine will help somewhat and perhaps help the rls at the same time. Thank you again. Have a very Merry Christmas and a Happy New Year.
Seasonal Blessings to you, Kefira! OK, if morphine caused you breathing problems, then I guess that any other opioids would do the same - what a shame.
As for an inflatable pool, I was thinking that a very small one, say less than a meter in diameter, with side walls about half that tall, might fit on the floor of your shower stall. Just trying to think of ANYthing to give you a few minutes of respite from your current difficulties. And thank YOU for being such an inspiration to us all.
Merry Christmas, TheDoDahMan, I hope you are enjoying this special day. I talked to my doctor over the telephone yesterday and she said to just stop the ropinirole if it was making me worse and I asked for pregabalin nstead which she said OK to. Just like that. When I said it wasn't right to suddenly stop she said she'd go and look it up. This is the regular travesty I have to deal with. Not a clue. I am going to wean myself off of the R and gradually increase the P. My rls is now so bad I'm lucky to get 3 hours sleep max a night and I have it all day as well. I'm so angry such a drug is allowed. Because of my cardiomegaly and leaking valve, diabetes and CKD, I shall have to be very careful indeed. I have a deep loathing of Big Pharma and the quacks who are little more than drug pushers these days with little care for the damage they do. Re the pool, it would be impossible for me to set it ip as I'm physically very disabled but if I can ever find one small enough and someone to help I'd give it a go. Once again, many thanks for your kind words and suggestions. May you enjoy the Festive Season with much happiness and joy.
Amazon (and many other places) sells little electric air pumps for a few quid, but you'd have to be up to dumping the water down the drain between "baths". I'm so sorry that you are so incapacitated - the fact that you can maintain your cheerfulness is an indication of your great strength. Merry Christmas, and have a healing New Year!
Ropinerole is awful!!!!! Be patient.... It'll take a while to get out of your system! It gave me, after three months, terrible leg cramps and other assorted ailments. Thinking of you and wishing you a very Merry Christmas from Marietta, GA, U.S.
Hello Rwall, your encouragement is welcome, thank you. It is indeed a filthy drug and I wish I'd never even heard of it. My doctor should know better. Sending kind thoughts back to you from a dull and chilly UK. Merry Christmas.
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