Hello i really need some help - For two weeks now i have had severe RLS worst ever - have just had my first iron infusion and have added a number of vitamins am wondering if anyone can shed some light on what might be happening - it all started with muscle spasms all over back from neck to feet / put my back out has continued getting worse with cramps in feet can iron infusion make symptoms worse for a start - im at my wits end - sorry tobe negative but even my doctor is puzzlrd - im now having to take Codiene also im not very good on technology can anyone tell me how and where Dr B replies to your email - thanks if you can help Jan- ET
Going nuts with RLS: Hello i really... - Restless Legs Syn...
Going nuts with RLS
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jan_ET
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Hi Jan
I would repeat what I said to you 6 days ago.
If you’re a still on Amitriptyline, your RLS will be worse. You need to change to another anti depressant like Trazodone.
Also, I still think Sifrol is the culprit. The symptoms you describe are classic Augmentation.
Just put Augmentation in the search box top right and you’ll see all the posts.
Your doctor should not be puzzled, he should know this.
The iron infusion will not help if you’re in Augmentation and still on Amitriptyline.
Once off Amitriptyline and Sifrol- you will see an improvement but withdrawal is very difficult but possible.
I’m sorry I can’t be more positive but your meds are causing the problem.
yes i lnow and my doctor is on board so started the withdrawal of amitryptoline last night with help of codiene and tramadol and my doctor said rather ominously “we will be seeing a lot of each other” sooo amitryptoline goes first then sifrol - Jan
It’s great that your doctor will be helping you so much. Let us know how it goes.
Jools
yes ill keep you posted its because of you ive got the strength to do it and to my surprise my doctor is along and on board x
• in reply toJoolsg
Hi Jools. I'm hoping this Fri my doc will consider an iron transfusion-ferritin is 48 down from 62 several months ago. I've never had an iron trans. before. Happy to know there are no painful side effects. Am not on any meds except lasix, Thyroid, Coumadin(coming off soon) and Xanax. Your info relieved my mind. irina1975
If you are augmenting jan, then what ever you try to take will not work. I havent heard of iron infusions making RLS worse, so if you are still taking what jools said, then that is what you need to address. forget the vitamins for now too,. they wont help. Dr, B will send his reply to your email address, check your emails.
jan_ET• in reply to
thanks so much
jan_ET• in reply to
i have and mo reply
Jan, I totally agree with jools and elisse. It takes time and effort - unfortunately! As at this stage one often feels to lack exactly that. But we will tell you: you can! And we know, because many of us have been there, thus that is not an empty phrase. Good luck, hold on.
hi all after a couple of days off work and a few tears i went back to my Gp today and tonight i start the journey of getting out of the amitrytryptoline/ sifrol nightmare - i feel like a great weight has lifted off my shoulders and i cant speak for anyone else but because due to this forum and you amazing people i am looking forward to my next step forward - as im used to so many side effects from age 24 to 67 i feel i have the courage now because of people on this forum to face whatever i need to for recovery - thank you 🙏
Jan, I am right there with you!! I am in full blown augmentation, withdrawal, misery, HELL with Ropinirole, Colonzapam??? I am fighting hard on my 10th. Day cutting 0.5mg Ropinirole pills in 1/2 and taking 50mg Tramadol (my first experience with Tramadol)
This is a life saver to be here with all of you for me. I could not do this without all of your help!!
WE WILL GET THROUGH THIS ALL TOGETHER
❤️🙏❤️🙏❤️🙏
oh god you too thanks for letting me know my thoughts and prays are with you im on tradol and codiene for the change my doc says it has to be slow so last night i dropped half an amitryptoline YAY good riddance!!! ❤️👏🤪❤️💕
Jan, I got off Amitriptyline couple year ago and it wasn't that hard to get off of for me so I hope you have same results with that one that I did. ❤️❤️❤️
thanks did you go onto another antidepressant?
Jan, no I didn't go onto another antidepressant when I went off the Amitriptyline. I am 68 years old and I am so tired of trying to find the right Meds to mix together!! I just want the RLS to be controlled and I would be happy with that!!
oh thats good to know my doc thinks i may only need the other one - you know since ive been on this website i cannot believe how i have found answers and have taken them to the doctor and now action and heading towards the solution thank God and you people ❤️🙏💓
• in reply toSunshine458
Hello Sunshine. That's my goal too. I have an appt with a new neurologist first week in March. After last week's dismal, dismissive visit with my sleep doctor(pulmonologist) I made the appt. I don't want to go thru trial and error of many meds. I don't have the stamina right now. I want to try an iron infusion and this is what my sleep doctor dismissed. I told him my ferritin has drifted down from 62 to 48. He said it only had to be 50. When I tried to disagree he got very patient and spoke to me like I didn't have 3 grey cells to rub together. I am still mad. And discouraged. My goal is to lessen the rls pain, get some decent sleep every few nights and just be as peaceful as I can for as long as I'm still here. I am a retired nurse and I am totally burned out re medical care here in the US. I have one favorite doctor-my main cardiologist (Electrophysiologist). He listens to me about other probs besides my afib. I think I like him so much because he thinks so far outside the box he doesn't know there IS a box. Everyone else just seems to spout the USA healthcare party line which to me is so money-driven I have no patience with it anymore. My visit last week with the sleep doctor really pulled me down. Time to regroup and see what this new neurologist has to say March 6th. Thanks for listening. Sometimes I feel medical care is still in the dark ages-just fancier equipment and more expensive procedures and treatments. I also feel the need to say that often when I'm treated by some of these 'male authority doctor figures,' I believe I would get better care if I were a man. This is a can of worms I probably shouldn't have opened but it's what I believe! irina1975
Sunshine458• in reply to
Irina, I totally agree with you and that is why I am trying so hard to get through this augmentation/withdrawal thing with Ropinirole myself!! I know that my GP would just give me higher mg of the drug and I will just keep getting worse. I was awake for 2 days and nights and jerking terrible. I slept last night and I just feel drained today too. Right this moment I am not jerking. I am hoping that I am making some kind of progress and I just want to stop the awful jerking!! I can't survive like this any longer it's been as long as I can remember trying one drug after the other and I have been on the Ropinirole for a long time. I am so depressed with it all I don't know where to turn next. I thank God for every one of you here because without you all and your helpful information and experience I know I can't make it.
• in reply toSunshine458
Sunshine. I am praying that things do not become unbearable for you. So far I have stayed off meds-except for some pain pills left over from a gallbladder surgery last year. Those are gone and because of our administration making so many professionals afraid of prescribing pain meds I am afraid of asking for an RX though I think I will bring it up next week. All the years I was a nurse and healthy, young, and in good shape I never really "got it" re what patients with chronic pain went through. I don't think I would do anything to shorten my life.I'm Catholic and it's something I've never considered for myself but I do find myself thinking about how it would be ok if my pacemaker stopped or my afib problems took the decision out of my hands. I'll be 74 next month and the thought of going on with the rls pain for many more years is overwhelming. My other big fear is ending up in an assisted living/nursing home with no control over even being allowed out of bed after an uninteresed caregiver puts my siderails up for the night. Sorry to paint such a negative picture but I know very well the kind of care patients receive at night when visitors and daytime staff have gone home. Patients are at the mercy of sometimes people who don't care, are not paid very well and to me living like this would be literally a fate worse than death. I'm just still having a bad day over last week's visit. I'm hoping the new neurologist will be positive and helpful. Take care. irina1975
Sunshine458• in reply to
Irina, I am Catholic also and I relate to everything you have said. Hopefully this too shall pass and there will be better days ahead. I will keep you in my prayers for sure and together we will all just be here for each other and make it through this hard time!! Sunshine
• in reply toSunshine458
Thank you, Sunshine irina1975
jan_ET• in reply to
oh Irina and Sunshine I am Catholic also and am thinking at 67 and on my own and still working but dont think I can keep going much longer and am thinking seriously of trying to get into nursing home/retirement home and I know I still have a huge withdrawal from sifrol ahead of me so I am there with you - Jan
• in reply tojan_ET
Hi Jan, From you post it was hard for me to know if nursing homes and retirement homes are one and the same . Over here they are not. I'm starting my 2nd year in senior living retirement home and though I initially felt I was giving up independence I'm now beginning to like it. I have my own apt with full kitchen and once I'm inside I have full control of what I do. It's like having my own private living space but in a safe, secure bldg with rules that help everyone be 'good neighbors'. The main requirement is that you must be able to look after yourself. So far I can. It's the leap from this level to assisted living and nursing home that involves giving up so many independent activities that scares me. Often one of the major reasons people have to go to a higher level of care here is because their mental status declines. This terrifies me so I do everything I can to keep my brain functioning. It's actually nice to live the way I do- with independence but buses to take us to the store etc. My bldg is beautiful and well maintained. It's a highrise which I've never lived in before. (Lots of gossip and nosy residents but I'm learning how to work with that. )From the posts I've read withdrawal can be very difficult. I hope your goes smoothly and quickly for you.Also. good luck with finding a place that meets your needs. It can be a secure place to live (independently). The w/d experiences I've learned about from the forum from the meds that cause augmentation is what has kept me from starting any so far.Take care. irina1975
jan_ET• in reply to
hello irina our nursing homes or retirement villages - you can lease your own unit and look after yourself as long as you can and then when health declines you go into the nursing home- I think thats my best option- thanks for your lovely text it has given me hope for my future xxx👌🙏
• in reply tojan_ET
Hi Jan. Thanks for responding. I think perhaps you have a kinder system than what I have observed here. I think a problem we have is that once people need a higher level of care perhaps they are more segregated from independent people and their level of stimulation that goes with interacting with people at different points of aging takes away needed stimulation. I call it, unofficially, shelving the elderly. I wish I felt better about our system because I could end up there one day. It terrifies me and I hope that is not my fate. But none of us know our path. It will be what it will be. Also, Americans are not by nature inclined, in my opinion, to live in multigenerational homes. Every generation seems to want their own space. It's sad because it really does take a village. The lady that lives directly across the hall from me is Korean and she is not very well. There are quite a few other Koreans in my building and as a community they all take part in caring for this lady. They are not related but the others cook her food, visit with her, clean for her, do whatever she needs to live comfortably. She seems happy, not lonely and the other ladies who take care of her visit and laugh and they all have a good time. They don't just 'drop off food' and go. I understand that in their culture they take care of their elderly cheerfully and as something that is part of life. There are also quite a few American residents who wish they could see their grandkids more often, visit their children. Their families often only live in many cases several miles away. Sorry. Didn't mean to go off on a tangent. Thanks for listening. Take care. irina1975
jan_ET• in reply to
its the same here re the culture that is what gets me down the most - take care its a shame we are not in the same country - those of us with this dreaded affliction could join together and support each other xxx 💓🌺🌸
• in reply tojan_ET
That would be great. There was a time I thought I might be able to retire in the UK. In the 90'smy sister met a Scotsman who lived in Cumbria. They both had grown kids and they ended up getting married and lived in a village near a town. I think the village was Millom abd the town Haverigg-or vice versa. From their living room you could see the field with sheep and Black Coomb Mtn. And walk down the road to the neighboring farm for fresh eggs. I liked the man she married and they both told me I was welcome to live with them when I retired. Unfortunately they got divorced but I would have loved living in that environment. My sister has always had an affinity for Britain. She was the only American in the village and we would take the train to Barrow-in Furness(?) to shop. I have always lived and worked in big American cities and thought life in an English village would be wonderful. I could be sort of a retired 'Miss Marple' (LOL). Oh well, I really don't like Atlanta too big/crowded/lots of crime/traffic. I am not very patriotic and I am not enamoured with our 'illustrious' President! "Nough said! I still communicate by email with her ex-husband. He is from Colonsay. I liked the strand(?) that at low tide connected Colonsay with Orosay. It's fun to reminisce. Also I would like to meet some of you guys. I would fly out of Miami to Manchester. I grew up in Miami Beach. Atlanta's airport is the busiest in the world and is a mess to fly out of so I try to fly from another city. I've actually thought about moving out of the US but don't know where. But now would hate to leave my docs. More later.
• in reply tojan_ET
Hi. It's me.Just wanted to apologize for ending post so quickly. My neighbor came to the door which she does if she doesn't feel well. Will post later in my 'early morn hours' Later gator..
jan_ET• in reply to
i agee totally i had male specialists who just kept throwing drug after drug at me and nearly killed me finally my female Gp said no more you and I will do this together so I take her all I learn from here and our journey together is amazing!!!
hi sunshine I thought I would share some good news- I so wanted to see a movie- as i dont take meds during daytime thought I need to go to movies then- also went gold class which means armchair recliner - press button and leg support come up - also catered so munched on tiny apple tarts and bowl of icecream - 2hr movie and NO RLS - Im ecstatic so would never go any other way- btw how did you go at your son’s wedding was thinking and praying for you xxxJan 💕🙏👌
Jan, I am so happy for you!! My sons wedding is not till next Saturday February 17 but thank you for prayers because I need them BAD!!
I am on day #16 and the past few days have been horrible again!! I am not sleeping and jerking so bad I am exhausted with the whole mess!! I am afraid to even think what I am going to do next???
Sunshine
Have you spokento your doctor about Codeine - I have just read on one of the posts it needs tobe taken 2hrs before retiring but I take it after the last meds (whichis what sets the legs going) and itake a tramadol as well God what a mess - good on you though for getting through withdrawal 💓😀🌺🙏 nearly you are almost there xxxx Sunshine as the wedding is in a week I can pray for longer that you cope with it👌🙏😃
Jan, Thank you so much...I have Tylenol with codeine that I was given from a foot surgery in the past. I took Tramadol about half an hour ago and I am going to take a Tylenol with codeine now and pray to God I can just stop jerking. SLEEP would be great but the jerking has to stop!!!
I am praying for you too Jan and everyone that is going through this horrible time!! We will get through this!!
whats tylynol?
• in reply tojan_ET
Hi Jan I just checked with "Dr Google" and he/she says Tylenol and paracetamol are both the same as acetominaphen. So they are the same: Both are OTC pain relievers and fever reducers. Just have different names depending on which side of the pond you live. Take care. irina1975
Hi Jan, do you have a good, knowledgeable and sympathetic doctor? I have had chronic RLS since childhood now 64 years and my magic medication is called Sifrol and I am extremely happy to be able to report that it controls my RLS symptoms 100% without fail and I have all over body RLS. I could not and would not survive without it
yes my doctor is an angel and completely on board with this she has admitted doctors dont know nearly enough about all this but i trust her completely - i had to stop going to specialists they nearly killed me throwing more and more drugs at me i feel positive now and i am on sifrol too but its stopped working think augmenting so it might have to go too after amitryptoline - Jan
Photon, please tell more about your experience with Sifrol. I am in augmentation bad with Ropinirole that I have taken for years!! I am on day 11 of cutting 0.5mg pills in half and that has me down to approx. 1 pill 0.5mg of Ropinirole a day!! Which is good but I am struggling bad!! I am trying to use Tramadol 50mg 2xDay?? I also have prescriptions for colonzapam that I have been on and off of over the years too. I have taken them also over the past 11 days of this withdrawal period but I am not going over 1mg at the most 2x a day with colonzapam too. I hope I am doing this right...I have had RLS as long as I can remember and I think I have been on every prescription drug and every vitamin exercise etc etc....but one thing I know for sure is that I am going to have to replace the Ropinirole with something else and my GP will try to help me however she can so I just need some help to know what to ask about trying NEXT!! I have a very high tolerance to drugs and most drugs have opposite effect on me when it comes to sleep and relax!! I jerk so bad I even have the dog a nervous wreck!!lol
Thanks to EVERYONE HERE I can't live without you all ❤️❤️❤️
Sunshine
my doc has me on tramadol and codeine im not finding valium (clonazapam) helpful as it makes me cry the next day and gives me sore muscles but thats me though!
Sunshine, if you have augmented on ropinirole, a dopamine agonist (DA) you will sooner rather than later augment again on another DA. And sifrol/mirapex/pramipexole is another and stronger DA. Thus, sifrol may still work well for Phogan , it is unlilely to do the same for you.
I think your gp should start you on gabapentin or pregabalin, as you can soon stop taking the ropinirole. Gaba and pregaba are another type of meds than the DA’s. It would be best to start low, and titrate up slowly to find what dose works for you. However, you will not be able to tell unless the withdrawal symptoms of ropinirole have left your body completely. That may take some 3-4wks after your last dose - or longer.
It will be bad a little while longer, but there is light at the end of the tunnel and you’re getting there!
Lottie, thank you for your help, are you saying that I will have to go 3-4 weeks taking nothing for RLS and then start on something else?? What do I do in the meantime?? I am struggling really bad now!! I have not taken any Ropinirole for 18 hours and the last pill I took was 1/2 of a 0.5mg of the Ropinirole at 1am this morning (it is 8:45pm right now). At 3am this morning I took 1mg of colonzapam and I have taken Tramadol 50mg at 1pm and 7:30pm!!
It is 8:45pm now!!
I am miserable and I don't know what to do next???
If ANYONE can give me any advice to get through this PLEASE HELP ME!!!
THANK YOU ALL
Sunshine
Hi Sunshine
I came off Ropinirole in August 2016 . It was absolute hell and I didn’t think I’d survive. In 3 weeks I think I averaged an hours sleep a day. The RLS was so intense I couldn’t keep still for even a second.
I took 50mg tramadol every 4 hours during the worst week.
I made it through and am now on pregabalin and OxyContin.
I don’t get RLS in the day now but still get it at night but it is not as intense.
Ropinirole was brilliant while it worked but once Augmentation started I had no choice but to get off it.
Stay strong- you will get through it and will be in a better place. What meds are you planning to take when through withdrawal?
Joolsg, I am going to look in to pregabalin or gabapentin possibly after reading the post from Lottie and you both...I can't take OxyContin I threw up when I had foot surgery and the doctor gave me that for pain and it made me sick. I have taken Ropinirole for a long time but I have to get off of it because it's not working anymore and I am a total mess!! Right now I am jerking so bad I don't know what to do or where to turn next!!
I know how you’re feeling. It is torture.
It will get better though once you’re off that awful Ropinirole.
Pregabalin is better absorbed than Gabapentin with fewer side effects.
Keep us updated on the withdrawal- and do take tramadol to get through the worst of it.
Stay strong
Joolsg, Thank you so much for replying to me!! I am making notes with everything you all tell me so that I can take it with me to the doctor. I can tolerate not sleeping I just can't wait for the horrible jerking to hopefully go away!!
I will keep posting and I APPRECIATE EVERY ONE OF YOU HERE SO MUCH!!! I CANNOT DO THIS WITHOUT YOU ALL!!
Sunshine
i completely agree with you
oh sunshine i have to come off sifrol it is terrible I have been told to use pagabalin or gabapenton
Jan, I am right there with you!! I am going through HELL and I don't know if I am going to make it but what is alternative?? I have to get off the Ropinirole because it's working the opposite now but I have no idea what is going to be my next dead end drug?? This is pathetic (I repeat) to be dealing with in 2018 (especially at 68 years old) GIVE US A BREAK HERE!!!
I'm going to attempt to go back to bed!! I'm praying hard for you too Jan!!
What doesn't kill you makes you stronger so they say!!lol RIGHT!!!
Sunshine (feel more like a big black cloud than Sunshine)
Hi Sunshine and Jan, you both can help each other through this awful time aswell as the other members who have gone through augmentation and will keep giving any advice which helped them through When weaning of a dopamine med it needs to be done very slowly, so dont rush it even though you want it gone. And like Lotte has said never go back to taking any dopamine med again you will augment all over again. Good luck to both of you while you are on this journey of withdrawing. 
jan_ET• in reply to
many thanks Elisse
THANK YOU VERY MUCH AND I WILL POST EVERYTHING I CAN TO HELP YOU TOO JAN.
I am on Day #13 of this augmentation/withdrawal with Robinerol (Rquip). I think the jerking is getting worse instead of better?? I hope it ends soon because I can't go through feeling this bad without the hope of it getting better. I know I have to suffer to get through this but I need to know if "it gets worse before it gets better"??
Sunshine
hi sunshine i have all that to go through i guess i am just day 3 of very gradual withdrawal from amitryptoline 250 mgs x 3 and still have the sifrol to go but i cant understand why you cant take tramadol or codeine to relieve the withdrawals - does your doc lnow what you ate going through? jan
Jan, I am taking Tramadol 50mg 2x a day. I am going to call my doctor next week and see what my options are going to be to try next after the Ropinirole??? My so is getting married next Saturday so I have to try to get through that day and try to be at least partly sane!!
I hope you are doing good...this is pure HELL!!
Thank God for every one of you here!! I could not survive without you all ❤️❤️❤️❤️
Hello Sunshine how are you doing Im going well especially with the Codeine it seems to be my Godsend but I can only speak for myself of course - my latest thing to try on advice of someone else with RLS and peripheral neuropathy is an acupressure mat - I googled “Shakti” and read up on it and have ordered one - as I havent tried it yet I cant say anything but I want to have the least amount of medication I can and the other person said it saved his sanity - when you google have a read and see what you think- I have the symptoms in my hands as well due to augmenting so am trying the “ring” for hands - again havent tried yet so will keep you posted - hope you are coping better - my thoughts and prayers are with you ❤️🌺🙏 Jan
oh also I forgot to say on really bad occasions when no meds help I have to go for a walk and not a short one for about 15 minutes and then distract myself with some complex task like knitting or crocheting with detailed pattern - I have learned that as this is a brain/neurological habit the mind and my thinking plays an integral role in quieting the nerves. I also try having a snack with a cup of cammomile tea and put out of my mind that I have tried unsuccessfully to go to bed to sleep- just forget that and start the wind down to sleep all over again - unfortunately this process can take a couple of hours but the legs need to be stopped somehow. Another trick I have learned is before I lie down to rest when watching TV is lie flat on back, draw up knees, put couple of pillows under legs, this stretches the spine and really helps/ apparently stretching our limbs and muscles before resting is beneficial - hope some if this helps 😍🌺🙏 Jan
Hi Jan,. I am so glad to hear that you are doing pretty good!! I am actually doing better today than I have been with the jerking!! I'm almost afraid to say that because I don't want to Jinx myself!!lol
You sound like me with looking up new things like the mat!! I HAVE ONE!! LOL....yea I agree that it helps sometimes...get one,if you get a chance. I like mine. I did actually acupuncture and spent $600 because the person that told me to try it said to do at least 10x (1hour session each). That did NOTHING for me personally.
Hang in there! ❤️🙏
Sunshine
oh my goodness- the paths we walk in this quest to stop these legs - how much did the shakti mat help and how did you use it - I mean what position helps the most?
I have ordered one and the ring so cant hurt- I also have a bad back with 4 narrowed discs - old injury from being only 5’2” and nursing when the nurses lifted patients and did their backs in- looong time ago - Jan
Jan, I lie on my back on the mat and depending how long the mat it, I put it below my shoulder blades and down below my waist (length wise).
Oh my I am 5'2" also and I have back problems from being a beautician for years and lifting up women from shampoo chairs and standing, bending forever!!lol
oh wow thats an amazing coincidence and thanks so much for info re mat i look forward to getting it - i used to have a lot of acupuncture when i lived in Brisbane and it helped me tremendously so i have had very positive experiences of it. I like all I have read about the Shakti mat and ring. Its so lovely to text with you - helping me so much - take care - Jan
hello how are you I just have to share sonething very important i learned the hard way Tuesday night.rls were not too bad so went to bed and legs started a bit so took a tramadol and legs got worse so took 2 x valium then went to sleep. was woken 2 hrs later wide awake and couldnt go back to sleep so took another tramadol went to sleep for one more hour abd woke really awake at 3.30am . That was it sooooo lesson learned was tramadol for me does not allow me to sleep for more than one hour. next night and day I felt overdrugged so last night (I have already dropped 1x25mg Amitryptoline so dropped a sifrol and instead of using valium or tramadol i took one codeine and slept fir whole night ubtil 6am - miracle!!!! today ihave very slight internal jitters but its nothing - because of all you amazing people I am empowered and Dr B has told me what to take moving forward - Only Wellbutin- only safe antidepressant in australia for me - so it is very important how i combine my meds!!! lesson learned ❤️🌸🙏🌸💓
• in reply tojan_ET
Hi Jan. Had to jump in here. I can relate. I graduated in 1965. Remember: transferring patients from the bed to the chair and back by yourself/giving real back rubs/making beds with patients in them/not having gloves except for sterile dressings. Sounds like the dark ages. I think Florence Nightingale was in my class!LOL. xx irina1975
jan_ET• in reply to
exactly!!!
• in reply toSunshine458
Hi Sunshine, are you taking any opiate of any kind to help with the withdrawals...? I am ask after seeing Jan asking you the same thing. A opiate will help, i hope you are taking one. If you put Nick the Turk in the search box, you will find his journey of weaning off his dopamine med, His story will keep you going when you read it. He went through hell, and we all kept him going, he now has his life back..
Sunshine458• in reply to
Thank you so much Elisse...I could never make it without you all here ❤️❤️❤️❤️
hi sunshine its about 12.10pm Saturday in Oz not sure what time you have but I wanted to say I hope you cope with your son’s wedding and the RLS alliws you to enjoy it xxxx sendind love and angel blessings - Jan ❤️💓🙏💕🦋🌸😇
Have you tried requip? I was on amitriptiline also and requip worked for rls. I was also on Prozac and had to take requip.
Billard, jan_ET is still on sifrol or generic name pramipexole. That is a dopamine agonist (DA) like requip, generic name ropinirole. And a stronger one too. Once you augment on one DA it is no use to switch to another DA, as you will augment very quickly again. Because coming off a DA is so hard, no one want to start a DA again afterwards. That is why people generally switch to gabapentin or pregabalin (different meds in the same class) or, or combined with, a low dose of an opiate like codeine, tramadol or oxycontin.
As long as the requip works for you - enjoy! It often works well and for a long time,BUT sooner or (much) later it will lead to augmentation. rls-uk.org/augmentation-reb...
Thus, be aware of signs of augmentation and DON’T react by increasing your dose, as most doctors will suggest. Instead, wean off. Hopefully it will be years until you get there - if ever.
Kudos and respect to you Sunshine, Jan and Irina for some lovely, lively posts. This is an inspiring thread - filled with hope and positivity in the face of dark adversity. I want to wish you girls strength and support in your journey through the torture of withdrawal. Hope the worst of the awful jerkies are passing for Sunshine and that Jan's amitryptiline is reducing without too much trauma. Lotte, Jules and Elisse have made some really good observations and I would second everything they have said.
oh involuntarydancer what a lovely thing to say and thank you for the kind words of encouragement - it means a lot - 💓🙏🌸😋
Hi Jan and Sunshine how are you both coping with your withdrawals. ?
jan_ET• in reply to
ive been doing well but last night i took a frusimide for fluid retention and oh boy RLS went off badly - guess thats one to strike off my list- thanks for your concern - ive dropped one amitryptoline now and am trying to drop one sifrol as well - its tough with the sifrol so me thinks that is the main problem now - bye Jan ❤️🙏🌸
Today was day #21 for me with augmentation/withdrawal from Ropinirole ... I did not sleep at all last night and I slept almost 2 hours this afternoon. My son is getting married tomorrow and I feel like a total mess...I can't function like this and I am embarrassed because I know that people don't understand what I am going through and they think I am a hypochondriac and/or just crazy!!
I am taking 1/2 of 0.5mg of Ropinerole and 1mg of colonzapam (Klonopin) at night before I attempt to go to sleep. I am taking Tramadol 50mg. 2x a day. I am taking every kind of vitamin possible including Slow FE Iron. I can't find a magnesium that doesn't give me diarrhea and some days I skip the iron due to diarrhea problems too. I have IBS also!! I have a magnetic mattress pad on my bed, I am using magnesium oil to rub on my feet and legs and Epsom salts baths. I do better one day and then I have horrible days in between ... I don't know if I am doing the right thing or not?? I don't know what to expect next??
You all here know way more than any doctor I have seen ever, including neurologists...can anyone tell me that has been through this before if I am doing this right?? Since there seems to be side effects to all Meds and I have taken Ropinerole for years in different mg.. This is the lowest mg and the longest time I have stuck it out. Does anyone know what I should do next?? I am wondering if I should stay on the Ropinerole and just gradually take higher mg as I go again or try another drug??
I don't want to backtrack the progress I have made in the past 21 days of hell but I am far from better yet!! Is this NORMAL to struggle this bad and will I get better or worse as I continue to do what I am doing now??
I live in Arizona and medical marijuana is legal here. I am thinking of trying to get my card and experiment with some types of cbd oil or whatever it's called etc.. Instead of relying on prescription drugs??
I am 68 years old and I have suffered with RLS as long as I can remember but I think the older I get the worse it is getting. I am worn out with it all...PLEASE GIVE ME ANY ADVICE OR INFORMATION THAT ANY ONE OF YOU CAN!!
I CANNOT DO THIS WITHOUT ALL THE WONDERFUL PEOPLE ON THIS SITE!! YOU ARE MY INSPIRATION AND MY HOPE!!❤️❤️❤️❤️❤️
Sunshine
oh ps i have just ordered some tea online with kava kava in it so will post if it helps or not - Jan🦋
Yes let me know about the tea!! I have Kava liquid that I bought at Sprouts awhile back when I tried to find a solution!! I put some of it in juice like the bottle said to do the other night but I don't think it helped ... I have been trying so many different things to do better that I don't know anymore what is good or bad!! I'm at the point that I am ready to try ANYTHING!!!
Thanks Jan....hang in there!!! Sunshine
think its davidadill
i just had some great advice from davidallil(not sure of correct spelling as I have terrible blurred vision are you able to see his response to me - if i were you i would ask his advice - his advice to me was spot on x jan
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