Reversing Restless Leg Syndrome

[buglegs]

Yeah, unfortunately there is no treatment for DAWS except reintroduction of a dopamine agonist drug, which will probably eventually lead to augmentation again, just a matter of time. So all I can do is continue waiting and hope the DAWS diminishes with time..the other drug mostly that is recommended for PLMS is clonazepam which increases the dangers of respiratory depression, especially if you already have sleep apnea, which I'd be willing to bet most RLS sufferers have to a degree, RLS, PLMD, sleep apnea seems to be all tied together...So, guess I'll continue taking this journey one day at a time just like I have been up to this point..but I have been amazed with how well I've tolerated my RLS without taking Requip, 122 days ago I would have thought this to be impossible... so we shall see as time progresses..I only expect my symptoms to dissipate with time..

[buglegs]

Good Morning All, well today marks 135 days since my last dose of dopamine agonist and I feel great!! The symptoms/intensity of my DAWS is finally "slowly" subsiding which I believe will eventually be a thing of the past and the intensity of my RLS at this point has become more of just a nuisance. I haven't had to introduce any other type of medications, I've been able to control the RLS with watching my diet (including alcohol, caffeine, RLS inducing medications), moderate exercise and using my CPAP machine nightly. I have been going to bed around 10:00 PM, usually fall asleep right away awaking around 5:00 AM sleeping about 6-7 hours nightly, on occasion when I awake my legs have a slight burning and achy/sore feelings..although this is an 80%-90% improvement from when I was on the dopamine agonist medications. I'm very fortunate/blessed to be experiencing these results especially after being on such high dose(s) of DA's for such an extended period. Good luck to everyone that is fighting this terrible disease I hope you all find some means of relief because I know your pains...have a great weekend..

[Polar Bear]

It's good to hear how well you are doing. Stories like this are encouraging to other sufferers. Well done.

[ViewsAskew]

Good Morning All, well today marks 135 days since my last dose of dopamine agonist and I feel great!! The symptoms/intensity of my DAWS is finally "slowly" subsiding which I believe will eventually be a thing of the past and the intensity of my RLS at this point has become more of just a nuisance. I haven't had to introduce any other type of medications, I've been able to control the RLS with watching my diet (including alcohol, caffeine, RLS inducing medications), moderate exercise and using my CPAP machine nightly. I have been going to bed around 10:00 PM, usually fall asleep right away awaking around 5:00 AM sleeping about 6-7 hours nightly, on occasion when I awake my legs have a slight burning and achy/sore feelings..although this is an 80%-90% improvement from when I was on the dopamine agonist medications. I'm very fortunate/blessed to be experiencing these results especially after being on such high dose(s) of DA's for such an extended period. Good luck to everyone that is fighting this terrible disease I hope you all find some means of relief because I know your pains...have a great weekend..

Great news!

[Lissa496]

Congratulations! I am so happy for you and I hope you never have to go on another medication! ~Lissa

[buglegs]

Good Morning ...hope everyone is finding a means of relief from this terrible disease. Its been 7-months since I quit taking dopamine agonist, my current RLS symptoms are muscle cramps and burning feeling below the knees, very low intensity level but still noticeable especially when trying to sleep. I've been combating these symptoms by watching my diet, exercise much as possible, using my CPAP machine but with no introduction of other medications. I'm still having bouts of DAWS...I still continue to suffer from all the symptoms listed under the definition of DAWS, the symptoms come and go and have become a lot less intense than they were in the beginning. I've talked with numerous neurologist about RLS / DAWS, some seemed knowledgeable and some not so knowledgeable with regards to this disease. I've done lots of research on my own and the prognosis for DAWS that I've come up with is...it takes approximately 14-months of dopamine agonist abstinence before dopamine transporter levels (DAT) return to a more normal level..there is no standard treatment for DAWS except try and reintroduce a dopamine agonist for relief or hopefully wait out the symptoms...I have chosen to wait out the symptoms which takes lots of mental alertness through the use of cognitive behavior therapy...the anti-depressant drugs only exacerbate the RLS for me....So, all I can do is continue the path I'm on and hurry-up and wait...Hope everyone has a great day!!

[beckycolorado]

Hi Michael, it's been 3 and 1/2 months since I stopped taking a high dose of Sinemet (carbidopa/levodopa) but I added Suboxone to help with the transition. You are the only person who is talking about DAWS. It's been a little rough-going for me since I stopped the DA. I've experienced anxiety and depression, and a feeling of electrical sensations in my legs. This may be similar to your description of burning feelings in your legs. I can't find too much online about DAWS - most references relate to Parkinson patients. I have asked my doctor about my symptoms and he doesn't think they are related to stopping the DA. You talk about cognitive behavior therapy. What are you doing exactly? Any insight would be helpful. I figured that the effects of DAs could take a long time to leave my system and brain. Becky

[buglegs]

Hi Becky...I purchased a book on CBT and go to classes at my VA Hospital..provides me with a type of psychological treatment that has proven to be effective for a range of my symptoms including anxiety, depression, panic attacks, agitation..The CBT for me seems to allow me to change my thinking patterns, greatly reducing my DAWS symptoms or basically how I perceive/cope with all the symptoms. DAWS seems to be one of the unfortunate side effects or withdrawals from stopping dopamine agonist medications...DAWS..nothing more than drug withdrawals, both psychiatric and physical symptoms. It appears the symptoms can last for months or years with no standard treatment available, wait for the symptoms to subside with time or reintroduce a low dose of dopamine agonist, although this option could result in augmentation especially if you have already experienced augmentation. The only other means of relief seems to be the introduction of some sort of opioid..then you combat the problems from that later or take them the rest of your life. I'm just hoping my DAWS continues to dissipate with time, so far my symptoms have weakened or become less severe with time..Good luck on going forward...

[Rustsmith]

One of the problem with DAWS is that almost, if not all, of the research work done on DAWS was done on Parkinson's patients who were rapidly taken off of high doses of dopamine (Carbidopa/Levodopa) and/or dopamine agonists without a taper and not on augmented RLS patients. As a result, the suggestion to treat through the use of a small dose of a dopamine med makes sense since the patient was augmenting. Late stage Parkinson's patients essentially have no natural dopamine, so adding more wouldn't hurt. RLS patients have too much natural dopamine, so as Dr Winkleman put it, telling an augmented RLS patient to take dopamine is like throwing gasoline on a fire.

Also, some of the recent studies on brains of post augmentation RLS patients has shown permanent changes in the brain's structure due to augmentation.

By the way, if you were not already familiar with it, there are essentially two types of dopamine D1/D5 and D2/D3/D4. The current theory being tested with the new augmentation prevention treatments is that we have too much D2/D3 when we augment and not enough D1/D5. So the clinical trials are looking at preventing augmentation by adding a bit of D1/D5 to the current D2/D3 meds. Of course, avoiding dopamine in the first place is even better.

[buglegs]

Thanks Steve...I wasn't aware that there are essentially two types of Dopamine, I've done some research on dopamine and dopamine receptors, knew we had the different receptors but not two types of dopamine, sounds interesting.. I'm trying to educate myself on all this stuff but it sure is really confusing...Where can I read about the clinical trials or find the information describing the current theory being tested that you mention in your reply?

[Rustsmith]

The best place to find the results of recent research is on Google Scholar. This is not the same thing as Google. About half of the citations that it pulls up direct you to publications that include the entire text. An increasing number of citations recently have links to chapters of books and these often only include a few pages.

But a large number of citations will only provide a link to the abstract. This is good to see if the paper looks interesting, but often the abstract doesn't include the results and can occasionally be a bit misleading. For these papers, if you find one that looks promising, you can contact your local library and ask them to get a copy for you by Inter-library loan. I haven't had to do that since I have access to many of these publications through the university library where I help teach engineering. However, the last few times that I did it, the local library just had my fill out a request online and then sent an electronic copy to me by email a few days to a two weeks later. The only catch is that you will need an account with your local library and that might require an in-person visit to get a library card.

One thing about Google Scholar to keep in mind is that they allow you to select date ranges to search. If you don't specify a range of dates, the papers can range from the 90's to this month. But you can say, Just since 2024 or between 1999 and 2002. You can also tell it you only want review articles (you probably don't) or to sort them by date, relevance, etc.

[beckycolorado]

I purchased a book on CBT and go to classes at my VA Hospital..provides me with a type of psychological treatment that has proven to be effective for a range of my symptoms including anxiety, depression, panic attacks, agitation..The CBT for me seems to allow me to change my thinking patterns, greatly reducing my DAWS symptoms or basically how I perceive/cope with all the symptoms. DAWS seems to be one of the unfortunate side effects or withdrawals from stopping dopamine agonist medications...DAWS..nothing more than drug withdrawals, both psychiatric and physical symptoms. It appears the symptoms can last for months or years with no standard treatment available, wait for the symptoms to subside with time or reintroduce a low dose of dopamine agonist, although this option could result in augmentation especially if you have already experienced augmentation. The only other means of relief seems to be the introduction of some sort of opioid..then you combat the problems from that later or take them the rest of your life. I'm just hoping my DAWS continues to dissipate with time, so far my symptoms have weakened or become less severe with time

Thanks Michael. I'm experiencing the exact same symptoms as you - anxiety, depression, panic attacks, agitation. I'm following your progress and trying to stay hopeful that the effects of DAWS slowly diminish over time. I don't think the Suboxone is necessarily treating the DAWS. It allowed me to discontinue my DA, which would have been extremely difficult to do without the opioid. But my feelings of depression, etc. combined with the burning and electrical feeling in my legs started immediately when I stopped the DA. I agree that DAWS is the same as any other drug withdrawal. Thanks for your posts about your recovery - they are really helpful for me. Becky

[buglegs]

I purchased a book on CBT and go to classes at my VA Hospital..provides me with a type of psychological treatment that has proven to be effective for a range of my symptoms including anxiety, depression, panic attacks, agitation..The CBT for me seems to allow me to change my thinking patterns, greatly reducing my DAWS symptoms or basically how I perceive/cope with all the symptoms. DAWS seems to be one of the unfortunate side effects or withdrawals from stopping dopamine agonist medications...DAWS..nothing more than drug withdrawals, both psychiatric and physical symptoms. It appears the symptoms can last for months or years with no standard treatment available, wait for the symptoms to subside with time or reintroduce a low dose of dopamine agonist, although this option could result in augmentation especially if you have already experienced augmentation. The only other means of relief seems to be the introduction of some sort of opioid..then you combat the problems from that later or take them the rest of your life. I'm just hoping my DAWS continues to dissipate with time, so far my symptoms have weakened or become less severe with time

Thanks Michael. I'm experiencing the exact same symptoms as you - anxiety, depression, panic attacks, agitation. I'm following your progress and trying to stay hopeful that the effects of DAWS slowly diminish over time. I don't think the Suboxone is necessarily treating the DAWS. It allowed me to discontinue my DA, which would have been extremely difficult to do without the opioid. But my feelings of depression, etc. combined with the burning and electrical feeling in my legs started immediately when I stopped the DA. I agree that DAWS is the same as any other drug withdrawal. Thanks for your posts about your recovery - they are really helpful for me. Becky

Becky...yeah I believe your'e right, sounds like we both are now not only suffering from Restless Leg Syndrome but also Dopamine Agonist Withdrawal Syndrome (DAWS)...Its been approximately 8-months since stopping all dopamine medications that I'd taken for the 20-plus years the withdrawal symptoms during that 10-12 day washout period was pure misery but necessary, a big part of the journey that you decide to take after you finally reach a point where higher dosages no longer work but make things worse. Anyways, I've been able to stop Requip thatI've taken for over the past 20 years reaching very high dosages up to 12 MG daily. I believe the basic dopamine agonist withdrawals diminished in a couple of months but now I'm fighting DAWS which starts out very bad and slowly becomes less intense over time. I can tell my DAWS symptoms are "SLOWLY" weakening with time so it takes a while to get past the DAWS after you develop the symptoms. Recommendation: Anyone deciding to stop taking any type of dopamine agonist medication, "DO IT SLOWLY" don't rush it, even though you can't wait to stop taking the Requip. I believe the DAWS will eventually be a thing of the past but I've read that it could take up-to- about 14- months, either way I still feel 90% better without taking Mirapex/Requip/Gabapentin or Lyrica, no other medications os of yet, except Ibuprofen every now and again...So, Becky..if your symptoms follow my current path, biggest thing on our side is time, the more time goes by the lower the intensity and cycle of DAWS symptoms, or thats what I've experience so up to this point..Just keep pushing forward..

[beckycolorado]

Becky...yeah I believe your'e right, sounds like we both are now not only suffering from Restless Leg Syndrome but also Dopamine Agonist Withdrawal Syndrome (DAWS)...Its been approximately 8-months since stopping all dopamine medications that I'd taken for the 20-plus years the withdrawal symptoms during that 10-12 day washout period was pure misery but necessary, a big part of the journey that you decide to take after you finally reach a point where higher dosages no longer work but make things worse. Anyways, I've been able to stop Requip thatI've taken for over the past 20 years reaching very high dosages up to 12 MG daily. I believe the basic dopamine agonist withdrawals diminished in a couple of months but now I'm fighting DAWS which starts out very bad and slowly becomes less intense over time. I can tell my DAWS symptoms are "SLOWLY" weakening with time so it takes a while to get past the DAWS after you develop the symptoms. Recommendation: Anyone deciding to stop taking any type of dopamine agonist medication, "DO IT SLOWLY" don't rush it, even though you can't wait to stop taking the Requip. I believe the DAWS will eventually be a thing of the past but I've read that it could take up-to- about 14- months, either way I still feel 90% better without taking Mirapex/Requip/Gabapentin or Lyrica, no other medications os of yet, except Ibuprofen every now and again...So, Becky..if your symptoms follow my current path, biggest thing on our side is time, the more time goes by the lower the intensity and cycle of DAWS symptoms, or thats what I've experience so up to this point..Just keep pushing forward..

[/quote]

Thanks Michael. I agree with everything you say. It will be interesting to talk with my doctor in January about DAWS. I didn't know a bit about DAWS when we did a direct switch from my DA to Suboxone and he didn't offer an option to transition slowly. What's done is done but I will still ask him his opinion of DAWS and if he's seen it in other patients he's treated.
How is your RLS now? Do you have any of the traditional symptoms at night? If so, do they affect your sleep?
Thanks for your updates. It's great to know your DAWS symptoms are slowly subsiding. I agree with you - just keep pushing. Becky

[buglegs]

Thanks Michael. I agree with everything you say. It will be interesting to talk with my doctor in January about DAWS. I didn't know a bit about DAWS when we did a direct switch from my DA to Suboxone and he didn't offer an option to transition slowly. What's done is done but I will still ask him his opinion of DAWS and if he's seen it in other patients he's treated.
How is your RLS now? Do you have any of the traditional symptoms at night? If so, do they affect your sleep?
Thanks for your updates. It's great to know your DAWS symptoms are slowly subsiding. I agree with you - just keep pushing. Becky

My current symptoms that I believe to be directly related to my RLS is: Painful legs mostly below the knees (medium intensity level that fluctuates), feels almost like the soreness that comes after having real bad LEG muscle cramps. Sometimes this pain/soreness is felt in the muscles in my upper legs, mostly real sore feeling. The intensity level that I'm having fluctuates daily but not to levels needing to be controlled with any other type of medication except ibuprofen on occasion, 800 MG @ night. Then I'm having the "Pins and Needles" feelings all over my body at times, seems to depend on the type of material is touching my skin, almost feels like I have one of this old itchy wool Army blankets wrapped around me having direct contact with my skin. These symptoms come and stay for about 5-7 days then they go away but eventually comes back in about 14-18 days...I believe these symptoms to be the baseline of my RLS at this time and its been 8-months today that I've been "Dopamine Agonist Free" was taking 12-MG Requip this time in December last year to 0.0 today and feel 90% better, just wish I'd have stretched out the tapering process a little longer but I was determined to stop Requip ASAP, especially after I figured out what Augmentation fully mean't...Now I'm suffering from "DAWS" which presents another whole set of symptoms.....
CURRENT DAWS SYMPTOMS: Depression, Anxiety, Panic Attacks, Agitation just kind of an overall Apathy type condition...These symptoms seem to come and go in cycles but not all of them at once, like I say they cycle...This symptoms were very strong and steady day after day in the beginning but over-time since stopping the medicine my symptoms have become a lot less intense and they come less often, so I'm thinking these symptoms will dissipate eventually, just a matter of exactly when..I've read 14-Months Approx....mine has gotten 75%-80% better over the past 8-Month period. The dopamine agonist medicines I believe have a purpose but just not for Restless leg Syndrome, maybe given during a hospice situation but that would be about it...anyways, hope everyone has a Very Merry Christmas and A Happy and Prosperous NEW YEAR!!!