So, I called the Dr on Monday to let him know the Mirapex wasn't working. I had to leave a message, of course. Finally, the nurse called me back at 5:30 pm and wanted to know the dose I was taking. I told her I followed instructions and was on .125 mg for 5 days, then .25 mg for five days, and was currently at .5 mg. I told her the Mirapex was making me nauseous and sleepy and giving me bad headaches and making my daytime RLS symptoms worse. She told me to stop taking it and would call me back after talking to the Doctor. That was it for Monday. Then on Tuesday, the nurse called me back to ask how things were going at the .25 mg dose. I told her that dose was ineffective as well. That was it for Tuesday. Are you serious?! Really??? We had to waste a whole day to get that precious info? How stupid does my Doctor think I am? If everything was great at the .25 mg dose, why would I go up to the .5 mg dose? Or, even if I did, why wouldn't I just go back to it on my own when the .5 mg dose wasn't working? Meanwhile, I haven't had any meds since Sunday. So on top of being sleepy and nauseous and having headaches and RLS out of control, I'm also sneezing and having the runs anytime I eat something. I mean, honestly, did we really have to waste Tuesday for that? If they don't call me back today with some sort of new med (or an old one), I'm going to flip out!!!
RLS, Frustration, Meds, Withdrawal, A... - Restless Legs Syn...
RLS, Frustration, Meds, Withdrawal, Anger, Etc.
If you Google "Herbal remedies for RLS" you will get several "hits" where you can get some suggestions on how you can help yourself. You might be better off to forget doctors and prescription medicines. In the final anaylsis, your health is your own responsibility. No one is forcing you to go to this doctor or to take this medicine. Why are you doing it? You sound like a helpless victim.
One of my sister's tell me this on a daily basis..
She switches doctors and goes for second and third opinions.
She doesn't have RLS but she has some other things going on
that herbs are pretty useful for.
I know that you meant well in telling people to put the power back
into their own hands and to be open minded, try some other things
besides running to the doctor..maybe even that doctors don't always
have the best information or suggestions.. They prescribe!
I get just as upset that there isn't enough study on RLS.. No one
really knows the pinpoint reason that it exists. It sounds like
few doctors believe that it's a real problem.
I don't think that I've heard from you before on this forum.. so
welcome. I'd be interested in hearing how you are dealing with
RLS. Please share. =)
So sorry ookla, you need to SEE your doctor. I know the withdrawal is hard to do. But i havent heard of sneezing and the runs when stopping that med. I hope you get another med really soon....
Someone telling you, you are a helpless victim, is hardly support when you need it. and herbal remedies very rarely work, and can cause just as many problems as prescription meds.
Keep in touch, we might not know the answer for you, but you can have rant and rave...
Thank you for the kind response. "Seeing" my doctor is difficult - he's the only doctor in this around here specializing in these matters, so he has to service a lot of people... we get one appointment every other month and things are handled through nurses relaying messages back and forth in the meantime. It's a bit frustrating (especially since I used to live in an area where I could call my doctor up and have an appointment that day, or the next day at the latest).
I did get another med. Klonopin. Just about to start researching it. I know it's a benzodiazepine - which I think means it's basically just a sleeping pill? If that's the case, and just Tramadol aggravated my sleep apnea, I'm a bit skeptical about taking it. But I don't like to complain. I already feel like I'm a difficult patient. At this point, I'd try unicorn blood if the doctor prescribed it. I am getting tired of trying all these meds, though. I'm seriously considering asking for this to be the last one - and either just go back to the 600 mg of Neurontin at night for sleeping or go back on the Tramadol and use a cpap or something to treat the sleep apnea.
Speaking of Neurontin. I stopped taking that to take the Mirapex. Maybe it's Neurontin withdrawal that's making me feel sick?
Anyway, thanks again for the support. Greatly appreciate it.
Frustrating! I know that feeling.
The nurse probably has to get permission from the doctor to switch up
or change anything in your treatment plan.
I think that you do need to get into the doctor or Hospital Care Emergency
room to get prompt treatment. It may or may not be from Withdraw. It might
be any number of things that is making you feel ill.
I get sick while taking Mirplex (generic) and when I miss a dose,
My legs act up so bad that I don't sleep a single moment and that
is what causes my body to respond negatively.
Please keep us updated. I'm praying for answers for you and good
health. =)
I'm sure she does. I would just appreciate a little more efficiency in the process. Maybe get all the important info in one call, or at least in one day. 
Thank you so much. I'll let you know how the klonopin goes. If I still can't eat without the bathroom problem by Friday, I'll go to urgent care.
Ookla... I really hope that you get good treatment.
Sounds like you are a very good patient. Bad patients
let things get so far out of control before they give feedback
to the doctor.
You did the right thing in calling, updating the nurse. It's the
only way that they could possibly know..
Hang in there and yes, please keep us posted on Friday!
Ookla, I wish you all the best, keep up trying, there must be a good med for you and you are not a helpless victim!!
Thank you for your support. Although I did take offense to that poster's remark, I must admit that I do feel helpless a lot. I think if the klonopin doesn't work, I'm just going to give up worrying about my daytime RLS and go back to taking neurontin at night... that seemed to have the least side effects of anything so far. I think my quality of life has actually gone down quite a bit since I stopped taking it and started messing around with all these other meds.
You are most definitely not a helpless victim. This is a forum one posts on for support and help. You are coping incredibly well in this awful situation you find yourself in. I am not sure what is the next best step for you to take but you must continue to seek medical advice and you should go to urgent care if you are still suffering with bowel problems. You must be feeling so unwell in every way and I am very sorry to hear this.
Gentle hugs.
I think my body just craves meds. I was feeling awful since Sunday after not taking anything, but since taking the klonopin last night, I haven't had any more bowel trouble after eating (I guess the day is still young, though). I'm trying to give this new med a chance, but after reading up on benzos yesterday, I'm a little freaked out about it.
I see the nations leading neurologist in RLS. These medicines cause terrible rebound effects and he spends much of his time getting RLS patients detoxed from them. That being said, ultimately I found relief from years of progressively getting worse RLS from going Gluten Free absolutely NO gluten. It changed my life. It was a huge undertaking but I would have done anything not to be at the point you are now.
I'm glad you found something that works for you. I've tried chiropractor, acupuncture, going dairy free, going gluten free, taking vitamin d, taking iron, taking magnesium, physical therapy, massage therapy, exercise, sexual activity, requip, mirapex, cymbalta, neurontin, neupro, horizant, tramadol, various homeopathic pills/supplements, and now I'm on klonopin. Out of all that, the only one that worked for me (only for three months, though) was the tramadol - it got rid of my daytime and nighttime RLS symptoms (50 mg in the morning and 50 mg at night)... but it gave me sleep apnea (which led to dangerous sleep attacks during the day) and destroyed my libido. My doctor said this is like that stupid whack-a-mole game... whenever we fix one thing, something else pops up.
But with Tramadol something else did not 'pop up'!!
Being serious, I only take Tramadol and it has dealt with RLS perfectly for the past four years. It certainly does affect 'libido' but as I am 63 and single I do not have the need for that part of life at the moment so I am prepared to loose it as long as the Tramadol takes care of the RLS.
well played! LOL
If it were just the libido, I'd probably stick with it.... but I can't handle the sleep apnea. It got so bad that I would have trouble staying awake while trying to drive down the street to the bank or grocery store. I can't risk that while driving my family somewhere. Also, sometimes for work I have to drive 260 miles. And even while not driving, I would start falling asleep at home any time I sat still for a few minutes. I'm glad it doesn't affect you like that.
I also have the sleep problem but much less so than when I was taking two 200 Tramadols - I dropped it down to two 150's per day taken twelve hours apart at noon and midnight.
I hope you can soon find your individual concoction of meds or whatever that solves or at least lessens your problems with RLS and sleeping. Regards
Ookia, I am caught on the merry-go-round of prescription pain killers.
They work fantastic but I am needing more and more of the same drug
to get the same effects. (of calm legs)
My doctor limits the amount of pills to a max of 3 nights per week. = //
That will vary through our monthly visits.
I must admit that I have quite shallow breathing going on after taking the
Vicodin. I know this because the same breathing pattern stays with me
until later in the morning after forcing myself to take deep breaths. I
can feel that my chest didn't expand overnight.
I'm on month 2 of eating fruits and veggies in a blender So I drink
my meals and then eat 2 chicken eggs and a palm size piece of
chicken. My RLS has been steadily at it's worst...unless I take a
pain Killer along with my Mirplex.(generic)
I've wasted tons of money on herbs...is there really a reliable source
of information out there? I see so much conflicting advice. My doctor
says that none are proven to work...Nightdancer warned me against
using those kinds of miracle remedies... but I tried it anyway..
My insurance company will pay some towards the chiropractor. I would
go that route in a heartbeat if it didn't bankrupt me. My insurance will
pay for generic drugs though. Herbs and Vitamins won't be paid for
by my insurance company.
Try and keep trying... it's all that we can do. =)
I strongly suspect the prescription pain killers is the only place I'm going to find relief... but, as I mentioned before, they come with unwanted side effects.
This insidious ailment is so individualized that it's hard to tell people "definitely try this" or "definitely don't try that" since everyone seems to respond to things differently. That being said, imho, chiro and herbs are a huge waste of time and money. I think if anyone has gotten any relief from there, it's due to the placebo effect.
I'm close to accepting the fact that I'm just treading water until they invent a pain med that doesn't cause/increase sleep apnea and kill libido. While we're at it, might as well make it safe for long term use and not need to increase the dose every month or so. 
Yikes, there is not an easy fix for our RLS, that the problem. Natural stuff doesnt seem to work. Herbs and supplements do not work. or very rarely. Iron pills very rarely work. etc etc, As already said, we are all so different in one way when trying stuff out, trying to find that magic fix for our RLS. The one thing we all have in common, is we cant sleep or rest without the RLS kicking up (pun intended)
I have tried most things when i have seen someone somewhere say they have tried whatever....none of it worked for me, and i dont bother anymore, i now keep my money in my purse....
What we need, and i have been saying it for years, is medications which work just for RLS, instead of having to use meds intended for other illnesses. But the chances of that happening are pretty remote. That will cost money to research how they can find that med just for us.one that doesnt cause augmentation would be really good..!! One that allows us not to be sleepy during the day, would be great..!! I guess i can only dream it MIGHT happen...then again pigs might fly..!! lol...
Dream big because it might just happen if enough step up to the plate
and tell people about this disease.
They can fix erectile dysfunction doesn't kill anyone but they have a
fix and tons and tons of money went into that study, research, development!
I'm ranting. Sorry for being blunt but RLS is far more of an annoyance and
the truth is that no sleep sends blood pressures to sour, causes accidents
for running of the mouth or in traffic. It's a huge hazard to go without sleep.
Lack of sleep caused me several other life threatening ailments. I am being
treated for those things! Call it whatever name ... I don't care. I can't get
sleep! THAT'S the problem!
Rant away... I KNOW RLS is more than an annoyance, i KNOW that sleep deprivation can lead to other illnesses... and can cause all sorts of other problems. People loose they jobs, their families, because of it. I dont know the answer, i wish i did, then i also wouldnt have RLS anymore either. I do know they have come to a bit of a stand still, regarding how to find the answer for us. RLS is complicated, it affects most of us in different ways, from mild to severe and everything in between. THATS why they are having trouble with finding the answer. There doesnt seem to be a common denominator (sp) that fits us all.. Probably the reason why some people find something that works for them, and when someone else tries it does ziltch for them.
Hi Ookla, it seems that you have been taking a cocktail of medications and it is time for you to take a "meds holiday". it's not easy (I know from personal experience) but you need to work out what is working, what is causing augmentation and what is giving you severe side affects. The worst thing for RLS is anxiety and stress, which I can guess you have plenty of at the moment. I have been through exactly the same thing. Anger, confusion, stress!! Take a deep breathe, except that you can do little about the condition.........at the moment......and try to get rid of the stress and anxiety that goes along with the condition. I have had RLS severely for over 40 years, I have good days and bad days but just take each day at a time. Good luck for the future
Me? Maybe I misunderstand what "cocktail" means, but I'm very careful to only be on one medicine at a time. As for "med holiday," I don't know what that exactly entails or how long it's supposed to last, but I was on zero meds from Saturday night until Wednesday night. As for what is working, the answer to that has been nothing (longer term, anyway - tramadol worked in the beginning, but then stopped while also causing unwanted side effects). The augmentation was caused by the various dopamine agonists (requip, mirapex, neurpro) - after I stopped those, my symptoms went back to the way they were (after about a week). I think there's a miscommunication between me and my doctor. He keeps giving me things to try before bedtime. Falling asleep isn't my biggest enemy right now - almost all of the various meds we've tried have helped me get through the night... my problem is what to do all day long sitting at my desk at work. Nothing so far has helped my daytime RLS symptoms. And the more I think about it, the more I think it's time to give up. In my opinion, the only thing that's going to work during the day is one of the pain meds - but those either make me vomit and/or cause sleep apnea and decrease libido (which is not good for my marriage). So that's it then. There's no solution. Time to just accept that I have daytime RLS and there's nothing I can do about it.
The only other thing i can suggest to you is, ask the doctor at this website rlshelp.org its a good website otherwise i wouldnt post it. You can email the doctor and explain your history of what you have tried regarding the meds, what happens, what has happened what you have tried. He MIGHT have some idea on what you can take or do...I cant say he can work miracles, but he does know his stuff on RLS.
Thank you for the advice. I actually have spoken to him. He basically said I'm out of luck. I could try methadone or oxycodone, but tramadol is the LEAST likely of all the pain meds to cause the side effects that I had - so if I got the side effects from tramadol, chances are I'll get them from the other meds, too... but to give it a try since everyone is different and you never know for sure. I just feel really uncomfortable asking my doctor for methadone or oxycodone. And it doesn't even seem worth it given the side effects. I think I should just go back to taking neurontin at bedtime so I can sleep and just suck it up during the day - at least that way I'm sleeping and not having any side effects. All the klonopin (the new med) seems to do is make me feel foggy and sleepy all day.
Those drug holidays are hell on earth. I have had periods when
the doctor thought it was best to let my body be free of drugs
for 2 weeks here and there. By the end of those 2 weeks I was
a bit heavier from sitting up eating to try to comfort myself. I would
eat and walk around all night until the wee hours of the morning
and then catch an hour or two at most of sleep. I became my
own worst version of myself in those two weeks.
Oh yeah. I remember trying to go cold turkey after being on 200 mg of tramadol. That week was the longest seven years of my life!
No you are not a helpless victim. The problem lies in the fact that not each med works for each person and it simply becomes a game of trial and error. I have tried alot of herbal remedies and natural things such as yoga and acupuncture and found that jut didn't help.Acupuncture actually made it worse. I know I have mentioned it before but fentanyl does really help. Not sure if it will in your case but when mirapex no longer an option or me I tried it. I have RSD Also which is extremely painful and it ended up really helping both.
Don't give up. Canada is taking RLS seriously now and I m sure the same will open in your country.
Stay Strong!
When I had to go off all meds my Doctor put me in the hospital for two weeks. They gradually took me off the drugs and supplemented with meth. When I got out of the hospital I stayed off any meds for a few months but it drove me crazy and I ended up back on mirpex. But it is working good so maybe the break was a good thing. Too ad we couldn't have a world conference on RLS, that might get one attention.
Good idea Rubylane25. As I have said in a number of questions and answers we need a 'reason' to be in the public's eye, something to cause interest in the public domain - a World Conference on RLS might just be the stepping stone that we need to give us the 'reason' to communicate with relative bodies all over the world. If we could get the backing of one of the known RLS specialists we would be legit in our publicity and I am sure many would want to be involved. Attention we need!
That is already being done, the RLS-UK is a member of an organization, the name which slips my mind right now. which meets up with similar charities and RLS organizations from many counties from Europe and the USA.
This is from the RLS-UK fb page....its from last year, but gives you an idea on what does go on.
September 23, 2012 marks Restless Legs Syndrome Awareness Day. This year, the RLS Foundation in the United States and Canada, the European Alliance for Restless Legs Syndrome (EARLS), of which RLS-UK is a member, the European Restless Legs Syndrome Study Group (EU-RLSSG), the International RLS Study Group (IRLSSG), and the World Association of Sleep Medicine (WASM) have joined forces to create an international coalition of individuals affected by the disease, and clinicians and neuroscientists dedicated to solving the mysteries of RLS/WED.
On September 23, 2012, these groups are coming together to recognize International Restless Legs Syndrome Awareness Day—a day dedicated to the continuation of educating the public and working together as we take steps towards to develop better treatments and, ultimately, a cure for RLS.
While there is currently no cure for RLS, there is effective treatment. Mild symptoms can often be successfully managed and controlled with lifestyle changes, such as increased exercise and better sleep hygiene.
For moderate and more severe cases of Restless Legs Syndrome, prescription medications can be helpful in managing the condition. In fact, in 2012, a ten-member task force from the International RLS Study Group released the “Summary of Recommendations for the Long-Term Treatment of RLS/WED.” The report outlined several classes of drugs that have been shown to be effective in the long-term treatment of RLS. These medications include dopamine agonists and alpha-2 delta ligands.
Thanks again Elisse for the update on past history of RLS-UK with relation to Restless Legs Syndrome Awareness Day et al. How well is this annual (assumed) event publicised and where?
It would be helpful to new Members to be able to view the history of RLS-UK and other organisations here on this site so every Member is up to date on the tribulations RLS-UK has been through thus far. A 'Sticky' as it were! Not hidden away in the hundreds of Questions and Answers but readily available for new Members to view. If there is one already available, point me to it!
There appears to be a number of very knowledgeable long time Members active on this site who are continually having to inform newer Members the history of certain subjects. If one of them would have the time to write an historical 'précis', that would be great. Kind regards.
I think you might want to contact the Chair and ask about that barried. I did hear of a sticky discussed on here, but doesnt look as if it has happened.
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