Reversing Restless Leg Syndrome

[beckycolorado]

Thanks for such a clear description of what you’re currently going through. I’ve been off Sinemet for 4 1/2 months and am experiencing the same symptoms of DAWS that you are - depression, anxiety, agitation. I am on Suboxone, though, which is controlling my RLS and allowed me to stop my high dosage of DA.

How are you sleeping? So many of us need gabapentin or an opioid to control our RLS at night. I’m just curious to know if your RLS has subsided enough for you to get some regular sleep.

Thanks for answering all my questions, Michael.

[buglegs]

I was initially prescribed Gabapentin to help with the RLS symptoms while tapering my dopamine agonist to 0.0. The Gabapentin caused extreme swelling in my feet, so I stopped the Gabapentin and started Lyrica which had the same negative effects, so I quit taking all medications April 22, 2024. I of course have sleep apnea which requires the use of a CPAP machine...After stopping all medications I revisited the sleep lab at my VA Hospital for re-evaluation or up-to-date sleep lab without taking dopamine agonist or any other type medications because that will affect CPAP pressures, temperatures, etc....Since ensuring all my settings/fittings are correct and utilizing my CPAP every time I go to sleep my RLS has improved drastically....Just as long as I maintain a healthy diet, daily/nightly sleep schedule (even on the weekends), NO ALCOHOL, very limited amount of sugar or caffeine, monitor a few other foods on a trial and error basis my RLS has been pretty much controlled. I usually go to bed around 10:00 PM, a pillow between my legs so they don't touch seems to help enormously, usually on my side, sometimes rolling-over to my stomach during the night, awaking everyday between the hours of 5-6 AM...The RLS symptoms are felt during the night just not bad enough to keep me constantly awake or requiring any sort of sedating medication...Just be careful with the Buprenorphine medications because they can be very addictive and very dangerous... Good Luck with your continued journey if I can help just message me...

[buglegs]

Well today I've reached a major milestone...today marks 9-months of being Dopamine Agonist Free and I feel great!! The initial dopamine agonist withdrawals are completely gone and my DAWS symptoms have diminished drastically over the past few weeks which were horrific first few months, although I fully expect it will be a thing of the past in a few more months. I believe my RLS has now reached its baseline..current symptoms are: slight burning/pins & needles feeling, sore achy/hurting muscles almost feels like residual pain from previous days of severe muscle cramps or over exertion from excessive leg workout/running, mostly concentrated below the knees although sometimes includes my thigh muscles. I've been able to control the intensity levels without introducing any other types of medications by eating nutritional meals high in protein, NO ALCOHOL, very limited caffeine/sugar, daily stretching/limited exercises, consistent sleep schedule with constant use of my CPAP machine. I've been averaging 6-7 hours sleep every night with limited awakenings due to RLS symptoms, although I have been having some issues with nasal congestion I attribute to my CPAP use...we all have sinus cycles but mine seems extreme or constantly short cycling from one side to the other but this could be from the cold weather...we have SNOW here today in South Carolina..something that don't happen very often here in the palmetto state..Anyways, hope everyone finds some way of getting relief from the horrible disease...

[ViewsAskew]

Such great news!

[buglegs]

Well its been 10-months now since stopping all dopamine agonist medications and I feel better and better everyday!! The symptoms that I'm experiencing now is just a drop in the bucket compared to when I was on the dopamine agonist drugs. My current RLS symptoms is minor burning sensations and muscle soreness feelings mostly in my lower legs below my knees with occasional soreness in my thigh muscles. I am experiencing some really weird cyclic symptoms that I believe to be DAWS...depression, anxiety, agitation, panic attacks and really weird pins and needles sensation in different parts of my body (Electrical Bites as Becky Describes). These symptoms seem to come in cycles, 3-4 days I'll be depressed then the depression dissipates and for 3-4 days I'll be easily agitated then that dissipates, then the electrical bites start for 3-4 days..etc....I'm currently at the 10-month dopamine agonist free point and these symptoms have become way less intense and way less frequent, they were very intense the first 6-8 months of stopping the dopamine agonist medications, so I believe that my dopamine receptors / transporters will eventually heal themselves and the DAWS will disappear...At this time my baseline RLS is very manageable without the aid of any other addicting killer drugs but who knows what the future holds....Hope everyone suffering from this terrible disease is finding some sort of relief because I know your pains...

[Rustsmith]

Thanks for the update Michael. Hopefully, your experience has been educational for those facing dopamine agonist withdrawal as warning not to do it too quickly if you are coming down from a high level and to do so under the guidance of a doctor who understands augmentation and proper DA withdrawal procedures.

[badnights]

....At this time my baseline RLS is very manageable without the aid of any other addicting killer drugs...

Awesome news! Here's hoping it lasts forever :>

[beckycolorado]

Thanks for the update Michael. Hopefully, your experience has been educational for those facing dopamine agonist withdrawal as warning not to do it too quickly if you are coming down from a high level and to do so under the guidance of a doctor who understands augmentation and proper DA withdrawal procedures.

Dr. Buchfuhrer advised me to stop Sinemet cold turkey and begin treatment with Suboxone in August 2024. And I was on an extremely high dose of Sinemet. I have experienced all the symptoms buglegs has - severe anxiety, depression, burning sensation in my legs. Dr. B never mentioned a tapering approach. What's done is done but I do wonder if my symptoms are related to the sudden stop of dopamine.

[buglegs]

Thanks for the update Michael. Hopefully, your experience has been educational for those facing dopamine agonist withdrawal as warning not to do it too quickly if you are coming down from a high level and to do so under the guidance of a doctor who understands augmentation and proper DA withdrawal procedures.

Dr. Buchfuhrer advised me to stop Sinemet cold turkey and begin treatment with Suboxone in August 2024. And I was on an extremely high dose of Sinemet. I have experienced all the symptoms buglegs has - severe anxiety, depression, burning sensation in my legs. Dr. B never mentioned a tapering approach. What's done is done but I do wonder if my symptoms are related to the sudden stop of dopamine.

Becky: If you were taking a high dosage of Sinemet for an extended / scheduled period of time and stopped immediately with no taper, I'd have to guess you differently are suffering from DAWS. There have been "NO" studies or research done on the longevity or seriousness of the symptoms presented by DAWS, it could last months, years or never go away, just imagine...a permanent disorder filled with life-long draining symptoms.. forever. All the many hours of research that I've performed over the past year on "Restless Leg Syndrome", "Dopamine Agonist", and "DAWS" I've come to the conclusion this is a disease that no one really has an answer for and don't seem to care enough to find one or at least validate the seriousness of the said symptoms, get over the Opioid Epidemic that was created by nothing but greed and provide the required medications for proper treatment. The Good News: If your DAWS progresses as mine your DAWS symptoms you experiencing should be slowly dissipating over the months since stopping Sinemet in August of 2024. I consumed dopamine agonist medications prescribed for RLS/PLMD for over 20-years before stopping exactly 10-months, 2-days ago and I feel so much better, my DAWS symptoms have almost completely subsided, another 3-4 months I believe my DAWS symptoms will be completely gone, 14-months is the number I've been able to find WRT "DAWS" withdrawl time table. You are currently at 7-months about half-way but things will slowly improve just stay the course.... as far as my RLS these days, it just seems to become less and less intense with time, the RLS intensity levels created by the dopamine augmentation that I was suffering seemed to have proven to be most of my symptoms, I just know my RLS and DAWS get better everyday that passes.. Hope everyone finds the key for relief because I know the pains you suffer!!

[buglegs]

Correction to last post:.....Its been 11-months and 2-days today since I stopped taking any type of dopamine agonist!!

[buglegs]

Well the 22nd of this month marked (1) year since I stopped taking all dopamine agonist medications..Its remarkable how much better I feel today and the misery I was going through 12-months ago. The DAWS symptoms which usually last approx. 14-16 months (according to my neurologist and all the research I've conducted) has almost subsided...my RLS symptoms are concentrated below the knees, mild occasional burning in the calves and ankle areas but not severe enough to seek any type of CNS depressant medication(s) at this point. I did have an appointment with my neurologist couple weeks ago and was approved for the Noctrix Nidra Device (TOMAC) which has been ordered just awaiting arrival hopefully this will eliminate the mild burning sensations that I'm currently experiencing...I'll continue to provide updates on how TOMAC works for me..Hope everyone suffering from this terrible disease is finding relief by some means..

[ViewsAskew]

Well the 22nd of this month marked (1) year since I stopped taking all dopamine agonist medications..Its remarkable how much better I feel today and the misery I was going through 12-months ago. The DAWS symptoms which usually last approx. 14-16 months (according to my neurologist and all the research I've conducted) has almost subsided...my RLS symptoms are concentrated below the knees, mild occasional burning in the calves and ankle areas but not severe enough to seek any type of CNS depressant medication(s) at this point. I did have an appointment with my neurologist couple weeks ago and was approved for the Noctrix Nidra Device (TOMAC) which has been ordered just awaiting arrival hopefully this will eliminate the mild burning sensations that I'm currently experiencing...I'll continue to provide updates on how TOMAC works for me..Hope everyone suffering from this terrible disease is finding relief by some means..

Love seeing your progression, Michael. Hoping it continues.

[Polar Bear]

It has been wonderful to read of your journey over the last year.
Well done and congratulations on your determination.

[badnights]

Bravo, Michael. Augmentation, DA withdrawal, and DAWS are a dreadful set of conditions to live thru. Your determination, and keeping other members informed, is inspiring.