Topic of the Year

Use this forum to discuss any issues associated with Augmentation
Rustsmith
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Topic of the Year

Postby Rustsmith » Thu Feb 05, 2015 11:38 am

The topic of the year for the RLS Foundation is Augmentation. The Moderators have decided to create a new forum to contribute to the Foundation's efforts in this area.

A significant number of the board's members have experience with augmentation, so please share your augmentation experiences here.
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.

sleepdancer2
Posts: 158
Joined: Sun Jun 29, 2014 7:46 am

Re: Topic of the Year

Postby sleepdancer2 » Mon Feb 09, 2015 10:21 am

Sorry I hadn't contributed to this topic yet, was waiting to have a block of time. My medication history regarding dopamine meds for my diagnosis of RLS and PLMD started in 1998 and includes 2-3 years on Sinemet, at least a half dozen on Mirapex, and a year or so on Requip. My memory is hazy on the specifics. Had several side effects on Sinemet but at that time never heard of the word augmentation so I'll just call those symptoms side effects, even though in some ways they resembled later problems known to be augmentation. Over the course of the years on Mirapex my limb movements worsened and my docs kept increasing my dosage. After a few different docs I lucked up on one who voiced concern that rather than the progression of my disorder, I may be experiencing augmentation. My legs flailed wildly at night every few seconds. My arms, head and torso also became involved. Although PLMD is a sleep disorder, my movements began to intrude into my "almost asleep/almost awake" time, where I was aware of them and could even count the seconds between jerks.

When the doc first recommended lowering the dose I was scared to take the chance. By this time I was taking ferritin because my level was pretty low. Getting it up didn't stop the augmentation. My RLS when awake had become life altering. I had to try to get off the med to see if any relief was possible. The transition period between weaning off Mirapex and onto Requip was horrid. I did have a few weeks once the Requip was increased that I experienced some relief. then the flailing started again on Requip and I needed to wean off it too. I don't think there were guidelines available back then for what meds could help when weaning due to augmentation. All I had was Tramadol, a pain med, which didn't help. It took some weeks after being off the meds for the wild flailing to gradually decrease then stop. At some point my PLMD normalized to repetitive contractions that in themselves are quite maddening, but nothing compared to the years of torment I'd already been through. My RLS has been minimal since off the meds. In retrospect, I think PLMD was my primary problem, and can't help but wonder if the RLS was an augmentation symptom, as I didn't have RLS symptoms before being treated for the PLMD diagnosis and have few problems since.

Being understandably fearful of new meds, as I weaned off the Requip I began to experiment with the TENS Unit the doctor had given me for lower back pain. After a few weeks of trial and error I found that using it before bedtime worked for quieting my legs enough to sleep, so I've been off all leg meds for 4 years now. A couple things about the TENS, I tend to think it is more effective for leg movements not caused by augmentation. The more my augmentation symptoms resolved, the better the TENS was able to control my to-be-expected PLMD movements. I also found I could not skimp on the electrodes. They need to be fairly fresh with very good contact to work right. I tried to save money by reusing the electrodes too many times, even taping them on, and my sleep got real miserable again.

To anybody who is experiencing augmentation and their medicine is making them worse instead of better, I feel for you. Getting off the med can be scary, but hopefully more is known these days to help make the process easier. I've read on here that weaning off dopamine agonists is not always seen as necessary these days. I'm guessing that applies to stopping from a low dose, not sure. I was at higher doses, and my self-chosen abrupt stop at one point left me with a permanent neurological problem and my doc was quite unhappy with me. Do discuss getting off any med with your doctor, and don't make rash decisions you are not qualified to make (like I did). I guess my biggest regret in all this is spending so many years being worse than I had to be. I'm glad we are in an era where augmentation is more widely recognized. BTW, I also experienced the side effect of compulsive behaviors, which went away after getting off of the dopamine agonists.

If you haven't seen my video of what my movements looked like during my years of augmentation, check it out.
https://www.youtube.com/watch?v=jE7WA_5c73c
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

srgraves01
Posts: 38
Joined: Wed Apr 24, 2013 4:34 am

Re: Topic of the Year

Postby srgraves01 » Mon Apr 13, 2015 2:24 pm

I have had RLS/WED for at least 35 years. During the first 20 years I controlled it through the use of stretching. In 2000 stretching was no longer effective and my symptoms lasted all night long. I then started taking mirapex. I started taking 1 mg but changed to 2 mg after a few months. I believe this may have been because I was also taking benadryl and zyrtec for some chronic sinus problems I had. In 2010 I experienced a significant augmentation. I had been taking 2 mg mirapex for 10 years and I had also started using a CPAP a few months prior to my augmentation. What started happening was that I was jerking in my hips and back. These became my primary symptoms. My neurologist gave me another diagnosis of propriospinal myoclonis. She actually submitted my case at a conference where she also showed a video of me jerking during a sleep study. After that she prescribed high doses of lyirca and neurontim that were not very effective and also made me depressed. She prescribed a combination of Klonapin and Zonisamide that worked for about 3 months -- she increased my dose and it worked for another month but I also became very constipated during that time.

I had found that hydrocodone worked, but my neurologist was unwilling to give me the dosage I needed to stop the jerking. Since nothing she gave me was now effective, I tried another neurologist who gave me several epileptic drugs that had little or no effect. My wife who is a nurse suggested I see a pain specialist to get an effective dosage of hydrocodone. I did this but the hydrocodone would only work for about 3-4 months before wearing off -- and I found that after a certain dosage did not work, that increasing it further was not effective. I tried a form of morphene -- but it gave me severe dry mouth and was not as effective as the hydocodone (when it was working). I then started rotating hydrocodone, diazapam, and a lower dose of mirapex.

Some time around 2012 I noticed that my jerking was more rapid with my CPAP than without. They had me do a sleep study that showed the change, so I stopped using the CPAP. A significant part of my sleep apnea seemed to be associated with a chronic sinus condition that I had where I had a lot of sinus drainage down the back of my throat. I was able to get an operation on my sinuses in 2013 that alleviated this problem.

In 2013 I started foam rolling that partially helps my symptoms.

In 2014 even rotating these drugs seemed to be gradually getting less effective - until it seemed like they were having almost no effect. That is when I started a modified ketogenic diet with my wife who has epilepsy. I experienced very good results at first few months and I was able to go for a week or more at a time without taking any medications. The effect of the diet has decreased but still has had some effect. I had gotten into large ketosis and was experiencing constipation. My wife found another book that said your body needs more carbs that these diets typically allow and that you can take more carbs if you also take BCAAs. I did this and my side effects went away. But I still did not have the effectiveness of the diet that I had at first. I still am on the diet and I make changes to it from time to time. I am able to rotate my meds and still go some nights without taking any -- I believe these breaks from the meds are necessary to keep them working long term. Sometimes I can go as long as 4 nights without taking any -- but my usual break is from 1 to 2 nights per week. I now take .5 mg mirapex and 4-8 mg tzanadine one night, hydrocodone another night and diazapam and generic sonata a third night. One note of interest is that the traditional symptoms of RLS -- the tingly feelings in calves and other muscles have actually increased since I got off of my 2 mg dose of mirapex -- but weren't noticeable until after being off of them for a couple of years and have gradually increased somewhat. Also, over time I am having more symptoms during the day -- although they are still not as bad as at night. The symptoms in my back used to be mainly in my lower back and mid back but in the last year seem to also be in my upper back.

S. Graves

sleepdancer2
Posts: 158
Joined: Sun Jun 29, 2014 7:46 am

Re: Topic of the Year

Postby sleepdancer2 » Tue Apr 14, 2015 7:04 am

S. Graves, was reading about all the meds you've worked with trying to find relief. You've certainly got more experience with meds than I ever want to have. I'm glad you've at least got some idea of how to help yourself. One thing you said jumped out at me. You mentioned your RLS getting worse after starting CPAP. It may be a moot point now, just wanted to mention that is not unusual for the legs to worsen during sleep once on CPAP. The CPAP does not cause the RLS to worsen. It removes a factor that once competed with the legs for causing wakings. Once you are not waking frequently from apneas, leg movements are free to more fully manifest. It doesn't mean your condition has progressed or worsened. It means you finally get to see how bad things really are with your legs. Did you get retested to make sure your sleep apnea was resolved? I just wouldn't want you to feel you can't use CPAP because of your RLS. It can complicate matters, but the seriousness of untreated sleep apnea makes it a worthwhile effort. Good luck with everything.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

srgraves01
Posts: 38
Joined: Wed Apr 24, 2013 4:34 am

Re: Topic of the Year

Postby srgraves01 » Sat Apr 18, 2015 5:13 pm

sleepdancer2 -- thank you for your reply. I do not doubt that what you say is true. But for me The difference is very noticeable even when I am in a semi sleep state. When I did the last sleep study, I did not take any meds and I slept very little during the test. I believe it was an ABAB condition where A is without the CPAP and B is with the CPAP. They did not tell me the actual frequency but my jerking seemed to be at least twice as frequent with the CPAP. I didn't even have to go to sleep to experience the difference. I also do not doubt that my experience is probably not what the typical RLS sufferer experiences. I have not been retested since because the CPAP's effect is so disruptive to my sleep that I sleep better without it. The operation I had on my sinuses has also helped. I used to sometimes have dreams about not being able to breath where I eventually woke up with an obstruction. I don't have those dreams any more.

sleepdancer2
Posts: 158
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Re: Topic of the Year

Postby sleepdancer2 » Sun Apr 19, 2015 7:41 am

S. Graves, just an observation... Historically your untreated sleep apnea kept the leg movements at bay, and resolving the apnea with cpap resulted in increased movements, right? If going off cpap resulted in your legs improving, doesn't that sound like sleep apnea is still present? If surgery actually resolved your sleep apnea, wouldn't that resolution have the same consequence as using cpap to resolve the apneas - increased movements? I know that following up on these things can seem like just too much. But not knowing exactly what you're working with makes it hard to seek solutions. If your sleep apnea is not resolved, leaving it untreated can do horrible things to your health. We all do what we feel we need to do to cope with our problems. You do what you need to do. I'm just saying that you shouldn't have to sacrifice one for the other. I'm surprised that when your tests showed more movements on cpap that your doctor didn't explain to you it was to be expected and to come up with an action plan to treat both. At the very least, if it were me I'd want a test to confirm my sleep apnea was gone. BTW, if your leg movements are intruding into your wake time, that sure suggests augmentation. Sure hope you find relief. Have you tried using a TENS Unit? For the last 4 years I've been able to fully control my legs at night by using the TENS before bedtime. Doesn't work for everyone, but may be worth a try. Just hard to find a doctor to prescribe it for limb movements as it's not a mainstream treatment. Hope you find at least some relief.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

sleepdancer2
Posts: 158
Joined: Sun Jun 29, 2014 7:46 am

Re: Topic of the Year

Postby sleepdancer2 » Mon Apr 20, 2015 8:43 pm

I just remembered something I probably should mention. You say you're aware of symptoms in a semi-sleep state. That could be be important. The worse our sleep gets the blurrier our perception of when we're asleep or when we are awake. What I thought was light dozing (Stage 1?) two of my sleep studies scored as wake time. Things that take place during wake time are not included in the "sleep" statistics. My study reported minimal limb movements when I KNEW my legs drove me crazy during the night. I was able to tell them a time range in one because the movements made me so miserable I called the tech to unhook me so I could get up and walk around. When they reviewed the data and video, I had well over 300 leg movements in a 45 minute time frame termed wake time. Just want to throw this out there for anyone experiencing augmentation who feels their study did not reflect their experience. With augmentation, all kinds of rules, norms, and expectations are violated. Had I not asked the doctors to go back and look at my tests, I would had gone forward thinking I was losing my mind and not had any confirmation of how bad my nights really were.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

srgraves01
Posts: 38
Joined: Wed Apr 24, 2013 4:34 am

Re: Topic of the Year

Postby srgraves01 » Tue Apr 21, 2015 6:46 am

Sleepdancer2 -- Thank you again for your replies. After the sinus operation I did not notice any difference in my symptoms. They did not seem to increase. Since the brain is right behind the sinuses I am guessing that the added pressure of the CPAP somehow aggravated something in my brain that made my jerking worse. It is interesting that in a sleep study movements while awake are not counted. I was not aware of that. The doctor may not have fully realized what was going on because of this.

Although I no doubt experience movements during sleep, I also experience them prior to sleep. Just lying down and relaxing causes jerking and can prevent me from going to sleep. So I will get up and do some foam rolling or take some medication or drink some coconut milk. For some reason I now experience more jerking in my hips and back than in my legs -- although some muscles originate in the legs and cross over the hips. I joke sometimes that if someone calls me a "jerk" that I would have to agree with them. :)

I have not tried a tens unit. I have read some posts about them which have made me curious. I will look into that further. Glad to know that it has been so successful for you. It is interesting that you said that you use it prior to bedtime. I would have assumed that one would need to use it throughout the entire night.

S. Graves

srgraves01
Posts: 38
Joined: Wed Apr 24, 2013 4:34 am

Re: Topic of the Year

Postby srgraves01 » Thu Aug 27, 2015 11:53 am

I just wanted to clarify one thing. The jerking starts when I am in a deeply relaxed state -- prior to sleep.

KonaKathie
Posts: 5
Joined: Sun Jun 13, 2010 10:30 am

Re: Topic of the Year

Postby KonaKathie » Sun Sep 06, 2015 9:03 pm

This is why taking some time off from those Dopamine drugs is important. Whatever it is you can find that works well enough to get you through a few nights, then you can go back and take them again. My Dr. just prescribed higher doses, and it's only thru this forum that I learned about augmentation.

ViewsAskew
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Re: Topic of the Year

Postby ViewsAskew » Mon Sep 07, 2015 4:40 am

srgraves01 wrote:I just wanted to clarify one thing. The jerking starts when I am in a deeply relaxed state -- prior to sleep.


I am not a doctor, but that sounds like hypnic jerks. Many people get them - they are not related to RLS or PLMS. You might want to look them up and see if it sound like what you experience.
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.

badnights
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Re: Topic of the Year

Postby badnights » Mon Sep 07, 2015 4:54 am

Whatever it is you can find that works well enough to get you through a few nights, then you can go back and take them again.
If you can see improvement with such a short break, that's great! For most cases of augmentation, it's not enough of a break.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Topic of the Year

Postby Orrel » Tue Sep 08, 2015 12:14 pm

Why anyone who has gone through the hell of d.a.augmentation and withdrawal
would want to go back on a d.a. is beyond me. I speak as one who has gone
through this hell and lived to tell the tale. Dr. Earley told me never to do this.
To me, dopamine agonist means POISON.

ViewsAskew
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Location: Chicago

Re: Topic of the Year

Postby ViewsAskew » Tue Sep 08, 2015 5:44 pm

Orrel wrote:Why anyone who has gone through the hell of d.a.augmentation and withdrawal
would want to go back on a d.a. is beyond me. I speak as one who has gone
through this hell and lived to tell the tale. Dr. Earley told me never to do this.
To me, dopamine agonist means POISON.


I see it a bit differently - I think it must be done carefully and NEVER as a fulltime option. You can use them successfully if you use them intermittently.
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.

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Topic of the Year

Postby badnights » Wed Sep 09, 2015 11:23 pm

I agree with Views. Make sure your ferritin is high, and never use DA more than X days in a row - - decide what X is, maybe 2, maybe 3.

I use levo-carbidopa as needed, and my rule is never more than 2 days in a row. I have broken the rule and gone to 3, but having the rule keeps me from going overboard. If I use it 2 days, I take at least 2 days off.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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