Lost

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

Lost

Postby richviv » Sun Aug 14, 2016 8:49 am

I have RlS/WED and other problems. I take ropinirole for my legs . I have taken it for many years . It helps but I get confused about augmentation -are some or even all of my symptoms ( leg movement and leg pain) a result of my med. I know if I do not take it I have symptoms and if I take it I have less or no symptoms and if I start having symptoms and I take some (my RX is 8 1mg tablets daily) I usually feel better. I also know , in part after reading posts here, that seemingly maybe even all meds used for RLS/WED have problems/side effects, and that what helps one person may not help someone else and even that one person who has been helped by a certain med, the med may turn on them and make things worse or just stop helping. I wish my question could be, what med is guaranteed to stop all my symptoms for all time , but I already know the answer- does not exist, which, of course , is a very bad/sad answer. So that leaves me where? I certainly wish My RLS symptoms were better controlled, but to go looking for a different , better and or even best med, seems like a "Crap shoot" , I have seen 2 neurologist and all they did is cost me more money. I have tried 2 or 3 other meds over the years, but I am still taking ropinirole. So before I end up writing my vastly entertaining life story and or taking whining to the next level (which I have advanced experience in). will some body , despite what I wrote earlier, tell me the 'Perfect Solution ". I will be waiting ( Please excuse the sarcasm, but , just know , I get tired of coping, putting a "smile on". having a hard time sitting for very long, waking up in pain, so I become a tiny bit bitter)

Rustsmith
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Location: Pueblo, Colorado

Re: Lost

Postby Rustsmith » Sun Aug 14, 2016 9:51 am

richviv, several points in response to your comments:

1. Whining and ranting are two things that most of us have done here. That is part of the role that the discussion board provides. All of us need some place to "let off steam" and it is far better to do it here than to direct it at our loved ones. So, keep it coming :)
2. Simply put, augmentation is when it takes larger and larger doses of a dopamine agonist, like ropinirole, to maintain control of our symptoms. The 8 mg dose that you are currently taking is twice the maximum recommended dose of ropinirole. So it is probable that you are experiencing augmentation. The fact that you are currently able to maintain control and do not appear to be experiencing other side effects is something that you need to consider before concluding that you need to make a change. It is when 8mg stops working and you find that you need 9 or 10 that you seriously need to ask yourself if it is time to make a change.
3. As for it being a "crap shoot" when looking for an alternative treatment, yes that is definitely what it is. But, we know from experience what the alternative approaches are. If ropinirole is your first DA, then the general approach is to try a lower dose of different one to find our whether you can maintain control with the alternative DA. Switching to gabapentin, Horizant or Lyrica is also something to discuss with your doctor. Yes, some people experience side effects with these meds, but some also experience unacceptable side effects with your ropinirole. So as you point out, there is no slam dunk alternative. About the only certainty with the treatment of RLS is that when we first start getting one of the meds, one of the DAs will certainly provide relief for the RLS symptoms - BUT the side effects may be unpleasant.
4. As for the bitterness - we have all been there. We have all heard of the seven stages of grief, well there has to be an equivalent series of stages of acceptance that we all must go through and bitterness is definitely one of them. The key is to be able to let out the bitterness so that you can move on toward acceptance.
5. If you want to end up writing your "life story" here, feel free to do so if you would make your feel better. if you were to search through these discussions, you would find that many of us have done that as part of the process of accepting our situation and then actively working to manage it so taht we can lead a semblance of a normal life.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Stainless
Posts: 142
Joined: Tue Dec 01, 2015 9:30 pm

Re: Lost

Postby Stainless » Sun Aug 14, 2016 12:44 pm

Wow, 8 mg! I have been on ropinirole for the better part of a year and had my ups and downs with it. I started at 1, quickly to 2 and when my doctor said 4 mg. of extended release I thought it would be a train wreck. The extended release greatly decreased the physical pain in my thighs and controlled the restlessness better but not what I hoped. On rare occasion I have supplemented 1 mg. on very bad days during the day. It greatly improved the immediate problem but I pay later with insomnia or my legs going nuts at night so I avoid that.

I have had rls for 40+ years and get about 2 good days a week, 2 bad days and 3 medium days. So I am no big fan of ropinirole but need something. I would think I have augmented except the good days. It is interesting how long you have been on it. Ropinirole has a reputation of augmenting more quickly than the other DAs but pramipexole gave me bad headaches.

You may be able to reduce your dose with extended release but it costs a lot more. I was paying about $75 a month but changed insurance who provided another generic brand for about $25 a month. Best of luck. Rick

Polar Bear
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Location: N. Ireland

Re: Lost

Postby Polar Bear » Sun Aug 14, 2016 1:53 pm

Just to comment where Rustsmith has confirmed that 8mg Ropinerole is indeed twice the recommended daily dosage. This is the official recommendation.
There are a few respected RLS Treatment experts who have intimated that perhaps 1mg Ropinerole should be considered as a daily max dosage. I'm taking 4mg spread over 24 hours and this is supplemented with Cocodamol 30/500, with Clonazepam as a sleep aid which is only just better than nothing.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

CarlaB
Posts: 20
Joined: Fri Dec 20, 2013 8:56 pm

Re: Lost

Postby CarlaB » Mon Aug 15, 2016 1:25 am

I hear your frustration and pain. This is a very hard disorder to live with.

I finally was able to get treatment by a doctor trained in RLS. He told me that finding the right solution would take time, and trial and error to find what actually worked for me. We went over all the medications available to RLS sufferers and what we should try first. This gave me hope. No perfect solution, but a doctor who was willing to try to help my symptoms.

I hope you find what works for you.

Yankiwi
Posts: 390
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Lost

Postby Yankiwi » Mon Aug 15, 2016 1:32 am

Rick, you might want to write your life story for Nightwalkers. I did and it helped clarify my RLS journey in my own mind. I find it helpful to have a timeline for reference.
I'm on a low dose of ropinerole, only .25mg as I'm petrified of augmentation. Along with it I take 100mg slow release tramadol at bedtime and it has been working very well, better than I ever expected and far better than two 50mg regular tramadol taken one at bed and one upon first time awake. I never was positive the 50mg dose even worked.

ViewsAskew
Moderator
Posts: 15815
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Lost

Postby ViewsAskew » Mon Aug 15, 2016 7:11 am

I think many of us have had many of the same thoughts you have.

I would go out on a limb and say that you are indeed augmented. I'd ask you the following:
- how much sleep do you get on average?
- how often do the meds seem to fail you?
- how often have you had to increase the dosage to keep the symptoms under control?
- can you live your life without issues - few to no symptoms, good sleep, able to eat out or go to the show, etc.?
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
Posts: 212
Joined: Sun Jun 29, 2014 7:46 am

Re: Lost

Postby sleepdancer2 » Mon Aug 15, 2016 9:26 am

Sorting through whether one is augmenting or not can be a bit tricky. If you end up finding that your dose (in my opinion a HUGE dose) is causing augmentation, I can tell you that getting off the med is one of the hardest things I've ever done, but staying on the med was even harder. At that dose I strongly urge you to take the time to wean off slowly. I made the mistake of stopping abruptly once and suffered some permanent neurological consequences - a glitch in the programming so to speak. Some on here have found a degree of success while transitioning by using strong meds to help them get through it. I personally see value in getting oneself as "clean" as possible to determine how bad the baseline symptoms actually are, but I wouldn't suggest anyone go through the hell I went through trying to do it without potent meds. That few weeks decreasing the dose then being off and waiting for the effects of the meds to clear can be pretty rough. For me, at least I then knew exactly what I was dealing with and could reassess how far I was willing to go for relief. I used that time to bolster my nutrition and get my ferritin, magnesium and Vitamin D levels up. In the end I feel lucky that after a period of hell I found my baseline non-augmented symptoms are fairly well controlled by using a TENS Unit at bedtime. May not always suffice and may need to reconsider meds one day, but it has bought me about 6 years. I just encourage you to not give up on reaching a better state of being.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

Re: Lost

Postby richviv » Mon Aug 15, 2016 10:33 am

Thank you for your replies. When I started Ropinirole it was not yet generic and 4mg per day of Requip was the usual starting dose ( if my memory is correct) . I had never heard of augmentation and I do not even know if this website existed.
On my first job out of college (where I met my wife) , there was a spirited woman -Judy. Judy was always saying she wanted to move to Colorado. After awhile I, and others, who worked with judy, when she mentioned Colorado, would reply-"judy, If you wanted to be in Colorado bad enough, you would be there" Maybe , just maybe, I am a little like Judy.
Not at all relevant, but there was another woman there named L. Ruhl. She was obsessed with perfection. Sometimes a person's name describes their personality as L. Ruhl had never met a rule she did not feel compelled to follow to the letter. .
Maybe this will sound like an excuse, but I have very little faith in much of what Drs claim to do, I have many examples I could give -the worse that a Drs incompetence probably resulted in my sister's death.Could my life could be better , certainly yes, but I remain convinced that opening the door to change without knowing what is on the other side is too big a gamble . I realize that my writing here is a paradox, wanting help but not listening to anyone, but , but so many posts here are from people struggling to find the right , better, or sometimes even remotely effective med, that when I am mostly Ok, and even though I hate some of the limitations , and the pain, one in the hand is worth 2 in the bush

Rustsmith
Moderator
Posts: 4232
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Lost

Postby Rustsmith » Mon Aug 15, 2016 12:22 pm

richviv, if you feel that you currently have reasonable control of your RLS using 8mg of ropinirole then good for you. The comments that you received are simply that you need to be aware that you are currently above the maximum suggested dose and that when the time comes where 8mg is no longer sufficient that you should consider moving on to something else. There are a number of other options, all of which you will need to evaluate with the assistance of the doctor who will be writing your prescriptions.
As for history with doctors, most of us also have had issues with doctors in the past. The trick is to educate yourself on all of the possible treatments and then search until you can find a doctor who either in highly familiar with RLS (you will know it if you can find one) or else a doctor who is willing to learn and who will allow you to experiment with various treatments until the two of you find something acceptable. The trick is in finding a doctor who is knowledgeable and whose ego is not so large that he/she is still willing to learn from a patient. Our side of that equation is to let the doctor know that we are knowledgeable about the variety of treatments and their pluses and minuses, but to also let the doctor know that he/she is still in the lead since he/she has to be willing to write that prescription for whatever it is that we think we want.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 15815
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Lost

Postby ViewsAskew » Mon Aug 15, 2016 7:16 pm

If you ever feel that you want to explore options, just let us know. It sounds to me as if you are happy keeping it as it is for now.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

sleepdancer2
Posts: 212
Joined: Sun Jun 29, 2014 7:46 am

Re: Lost

Postby sleepdancer2 » Tue Aug 16, 2016 12:14 am

You are wise to be discerning and cautious. it is easy to be an enthusiast for that which has worked for us, and lose sight of how difficult it is for one hearing so many (and sometimes dissenting) voices. Usually there is a tipping point in any struggle. If you cross it you will find yourself more open to seeking change. But I don't blame you for not being eager to open Pandora's box if not necessary. I enjoyed your examples of personality differences and how they affect our life choices. You seem quite in tune to who you are so I'm thinking you will make the best decisions for you with the appropriate timing. Great that you are gathering info to be armed to make informed choices. Good luck.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

richviv
Posts: 22
Joined: Wed Apr 16, 2014 8:55 am

Re: Lost

Postby richviv » Tue Aug 16, 2016 4:24 am

First, you moderators are probably the craziest people I have ever written. Your sincere , kind words written to me and I can assume to most (maybe all ) people who post indicate a caring for others that can only be described as abnormal., but in a nice way. I used to know a guy , I worked in mental health in a city of 30,000, that I can only believe every citizen of the city knew as "Crazy Tony". He rarely changed his clothes , would walk down the middle of a busy street yelling , etc. They knew him at the level of an entertainer -a bad entertainer . I got to know him as Tony. Now Tony wanted to thumb his nose at a hurtful world, a very costly thing to do. For a few days at one point, he changed into Anthony, wore decent clothes. talked about his life insightfully, was willing to take medications ,Etc. It was like a miracle. But a few days late he became "Crazy Tony"( a name he both hated and loved) , He died as "Crazy Tony" a few years ago. I know what it is like to care about people, and to try to be helpful. You guys are good at it . Thanks

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lost

Postby Polar Bear » Tue Aug 16, 2016 9:00 am

richviv
"""""but I remain convinced that opening the door to change without knowing what is on the other side is too big a gamble . I realize that my writing here is a paradox, wanting help but not listening to anyone, but , but so many posts here are from people struggling to find the right , better, or sometimes even remotely effective med, that when I am mostly Ok, and even though I hate some of the limitations , and the pain, one in the hand is worth 2 in the bush"""""
I could have written this extract myself. I know that my ropinerole dosage is higher than I'd like, but I more or less do ok (most of the time) as long as I'm not late in taking the meds. (the Insomnia is another matter).

Rustsmith's post of 12.22 - I agree wholeheartedly and it is pretty much how I manage my RLS. Education and passing it on to a willing doctor.

Sleepdancer's post of 12.14 - the description of a Pandora's box is so apt !! I have the lid on my Pandora's box closed really tightly but know that there may well be a tipping point at which time the lid must open.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Polar Bear
Moderator
Posts: 7644
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Lost

Postby Polar Bear » Tue Aug 16, 2016 9:02 am

Crazy abnormal in a nice way - that'll do nicely - thank you :thumbup:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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