Augmentation- Cold Turkey

Use this forum to discuss any issues associated with Augmentation
Polar Bear
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Re: Augmentation- Cold Turkey

Post by Polar Bear »

Do you think your doctor would be open to reading information provided by an RLS Expert?

There are some links in the Just Joined Forum - RLS A Good Place to Start. Also in the Augmentation section. Printing off a few relevant papers could be useful.

Also, this is a great book, it is easy to read and importantly, could be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. If you decide to get it make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. We need a level of around 100, especially if we are taking a DA drug such as pramipexole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
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

badnights
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Re: Augmentation- Cold Turkey

Post by badnights »

@ Borzoibabe
Your neurologist is clearly ignorant of the basics of WED/RLS. Her attitude is unfortunately common. Since she's your best bet for a referral, and in an effort to keep things pleasant, probably the best thing to do is bring her some literature. Specifically, if you can, print out the Medical Bulletin for healthcare providers published by the Foundation (instructions in the link below my name below this post) and give her a copy of this. (The Foundation also has pamphlets on augmentation and other topics that you might find useful, but don't overload her at first.) Best to read the Bulletin yourself first, and highlight 2 or 3 key paragraphs that you feel are relevant to your situation. Tell her you got it from the RLS Foundation, which is a non-profit with an advisory board of physicians who are RLS/WED specialists.

The ferritin test polar bear mentioned is important too. Low ferritin (below 75) is associated with more severe symptoms and increased risk of augmentation on dopamine-type meds.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

homer001
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Joined: Sat Sep 12, 2020 9:38 am

Re: Augmentation- Cold Turkey

Post by homer001 »

Hi guys my first day on the Board and already feel better hearing about experiences that are all to familiar with me. Had a mild restless leg problem up until 5 years ago until prescribed lithium for an anxiety disorder that triggered severe restless legs. Prescribed sifrol that was effective in the short term but quickly augmented. Attempted to taper off only too find that I had developed DAWS which has proven insurmountable cold turkey. Has anybody had any experience using opioid to get through DAWS.?

Rustsmith
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Re: Augmentation- Cold Turkey

Post by Rustsmith »

Homer, are you sure that you have DAWS or are you just having a difficult time getting off of Sifrol due to augmentation? Stopping sifrol without the use of an opioid will mean no sleep at all for 5 to 7 days and then slowly increasing amounts over the next few weeks. DAWS has a variety of symptoms that remain once you are finally able to start sleeping again. These range from anxiety to depression, orthostatic hypertension (low blood pressure when you stand up after sitting for a while), suicidal ideation, nausea, etc.

If your question is about withdrawal, aka zero sleep, then many of us were able to use an opioid to ease the symptoms of withdrawal and get some sleep almost immediately after stopping a dopamine agonist. You take one for the 5 to 7 days of DA withdrawal and then slowly taper off of the opioid unless your doctor intends to treat your RLS with an opioid from that point forward. In your case where your RLS was mild until the lithium, your doctor might want to see what your new RLS baseline is like after you are off of both the Sifron and an opioid before making that decision. Whereas for many of us who had severe to very severe RLS before we augmented, it was pretty obvious that life was not possible without some form of medication, which meant an opioid for most of us.

If you do mean DAWS with the extra symptoms, then I am not familiar with any treatment for it. I saw a publication about DAWS in Parkinsons patients from 2017 that said that there were no treatments for DAWS at that time and that the most important thing was to identify patients that are at higher risk of true DAWS and to closely manage their taper off of the DA.
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.

homer001
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Joined: Sat Sep 12, 2020 9:38 am

Re: Augmentation- Cold Turkey

Post by homer001 »

Thanks Steve doctor has called it DAWS but think you might be right been on only 0.5 mg for 5 years and been taking gabapentin since February which has largely controlled the augmentation got through 4 nights no sleep but then fell over hit my head and was concurred so Benn reluctant to have another crack and my neurologist won't come to the party on opioid. Need to get off these medications as in combination they are messing with my central nervous system and causing some neuropathy symptoms and I would caution anyone to be vigilant if they are combining medications. Time for a new doctor I think your post was really helpful as when I was going through withdrawal I did not have any of the other symptoms you described

badnights
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Re: Augmentation- Cold Turkey

Post by badnights »

Hey homer are you still taking the Sifrol or have you stopped it?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

homer001
Posts: 10
Joined: Sat Sep 12, 2020 9:38 am

Re: Augmentation- Cold Turkey

Post by homer001 »

Still hooked trying to get my neurologist to come to the party with a short term opiod to get through withdrawal . Gabapentin doing a reasonable job controlling augmentation but only a matter of time until sifrol reasserts itself. Combination of the two drugs is also causing me some neuropathy issues so desperate to get off these drugs but need to find a doctor who understands the challenges thar withdrawal presents. Are you aware of a preferred opiod?

Rustsmith
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Location: Colorado Springs, Colorado

Re: Augmentation- Cold Turkey

Post by Rustsmith »

The first choice of most of the RLS experts is usually methadone. First, it is a once per day med whereas many of the others are only effective for about 4 hrs, so you have to take them again during the middle of the night. Methadone apparently also has some effect upon the dopamine receptors, but not enough to cause problems. It also helps that it is pretty inexpensive (unlike tramadol, another med that can last for 24 hrs).

But that said, any of the opioids can be effective when used properly and at the right dose for that compound (which is far lower than what is usually prescribed for chronic pain).
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.

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