Augmentation - Delaying the Inevitable?

Use this forum to discuss any issues associated with Augmentation
Rustsmith
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Augmentation - Delaying the Inevitable?

Postby Rustsmith » Mon Jun 01, 2015 2:39 pm

Anyone who starts using a dopamine agonist (DA) to treat their RLS/WED should accept the fact that some day, they will be faced with the problem of augmentation. Some day might be after only a few days or it could be many years. We cannot predict which because each of us is different.

In my case, I started treatment using pramipexole and augmented on it after about nine months. I started out with 0.25mg in the evening, which worked well. In the end I was taking one 0.25mg pill at lunchtime and another in the evening and still was not maintaining control. My urge-to-move symptoms would start in the late morning and would continue through the rest of the day. My hours of sleep were also being effected.

At that point, my doctor switched me to the Neupro patch. My change from pramipexole to Neupro went very smoothly. The 2mg patch worked for another nine months, but suddenly stopped working. I would wake up an hour after going to sleep with major RLS symptoms in my arms, legs and torso. So my doctor increased the dose to 3mg and the problems resolved themselves.

That increase occurred three months ago and once again, the symptoms are coming back. Not only do I have an increased chance of waking shortly after going to bed with major symptoms, but there is also a background need to move throughout the day. So my doctor gave me the choice, increase the dose to 4mg or switch to methadone.

I realize that this is a clear cut case of augmentation and that I need to get off of DAs. However, I have an unusual situation in that I am a competitive athlete and am planning in running in the USA Track and Field Masters National Championships in late July. As such, I would be subject to drug testing by the same anti-doping agency (USADA) that caught Lance Armstrong. Methadone and all other opiates are on their Banned list of medications, with NO exceptions. If I was on methadone and was tested, I would be banned from competition for the rest of my competitive life.

I have a choice, delay the inevitable by increasing the Neupro dose and probably aggravate my problems when I have to stop using it or give up on my quest to compete again at the national level.

So, even when you know all the facts about DAs and augmentation, sometimes there are situations where doing the "right" thing is not what an RLS/WED patient may choose to do. As a result, I started 4mg last Friday and just hope that it continue to work until August 1.
Steve

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

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Polar Bear
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Re: Augmentation - Delaying the Inevitable?

Postby Polar Bear » Mon Jun 01, 2015 7:51 pm

I am sure you have well thought out your decision and I wish you well.
Betty
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ViewsAskew
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Re: Augmentation - Delaying the Inevitable?

Postby ViewsAskew » Mon Jun 01, 2015 11:38 pm

This disease just isn't fair sometimes. SO sorry you're faced with this difficult decision. Running is so important to you. It's just not right that some drugs are banned with no exemptions. I think I'd start appealing - someone has to make noise or it will never change - maybe that's your next career :-).
Ann - Take what you need, leave the rest

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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.

Rustsmith
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Re: Augmentation - Delaying the Inevitable?

Postby Rustsmith » Tue Jun 02, 2015 12:16 am

Unfortunately, age groupers like me hold absolutely no sway with respect to the rules. The rules are made for the athlete vying for either the Olympic teams or the national teams heading for the world championships. The opiates are banned because the semi-pros and pros could use them to mask injuries that would otherwise result in a poor performance or cause someone to drop out.

Oh, and I should not forget that these are not USA specific rules, but are supposedly applicable equally to all countries (even if we know that they are only enforced in N. America, the EU and Japan). The Jamaican sprinters got caught last year and the Kenyans have not getting caught at blood doping to a fine art (most of the time).
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
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Re: Augmentation - Delaying the Inevitable?

Postby sleepdancer2 » Tue Jun 02, 2015 12:44 am

When I was augmenting, although it seems counter intuitive, when I would step down my dose my symptoms actually improved for a couple weeks. Just wondering if using a TENS Unit could help you step down and/or give you a bit of help to get your through the upcoming event in July. From that high dose. I do hope you plan on weaning carefully off the med. Good luck in the race! I can't imagine having this problem and being able to do what you're doing. You have my respect.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Aipulu
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Re: Augmentation - Delaying the Inevitable?

Postby Aipulu » Fri Jun 19, 2015 4:31 am

Steve, I wish you well in the Track and Field Masters competitions. What is your event? Let us know how you do.

Richard

Rustsmith
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Re: Augmentation - Delaying the Inevitable?

Postby Rustsmith » Fri Jun 19, 2015 5:47 am

Thanks Richard. My best event is 800m, which most runners describe as the most painful distance in running. Last year I also added either the 1500m or the mile.

My goal in all of this is not to win, because I know I am not quite that fast on a national level. I was very happy last year just to not be last (I was exactly in the middle in the 800 last July). My real goal is to run against the clock and let the others drag me along to get a good time that can be used for my national age group ranking. So my goal is to end the year ranked in the top 25. I managed to do that last year in the 800 and almost did it in the mile.
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.

veldon75
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Re: Augmentation - Delaying the Inevitable?

Postby veldon75 » Wed Jul 26, 2017 11:50 am

I have been on Mirapex .75 to 1 mg for 12 yrs, I have tried to stop it a few times without success. I am to the point of severe augmentation and desperate to stop it. I have a few oxycodone left and Kratom, I need to try it again but have had several surgeries in the last 3 years so have been really tired and in severe pain. I hope I have the strength to do it! I know I have to before it stops working completely, It barely works now and I have to take 1 mg per day. My Neurologist put me on Gabapentin, but I'm so tired and only on 200 mg I hate Gabapentin because it makes me gain wt and tired and have to take a mega dose for it to do anything very frustrating!! :cry:

stjohnh
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Re: Augmentation - Delaying the Inevitable?

Postby stjohnh » Wed Jul 26, 2017 1:34 pm

veldon75 wrote:I have been on Mirapex .75 to 1 mg for 12 yrs, I have tried to stop it a few times without success. I am to the point of severe augmentation and desperate to stop it. I have a few oxycodone left and Keaton, I need to try it again but have had several surgeries in the last 3 years so have been really tired and in severe pain.
....:


Sounds like an awful situation, but unfortunately a very common story here. Perhaps your neurologist would give you some oxycodone for short-term use to ease withdraw from the mirapex. That would be the more or less standard type of approach, though withdrawing cold turkey is also recommended by some neurologists. Is your severe pain a result of the RLS or some other problem? Unfortunately withdrawal from dopamine agonists like mirapex is extremely difficult, many of us here have been through it and you have probably read some of the heart-wrenching stories of the difficulty going through the withdrawal process. The first 72 hours are generally the most difficult, and if you can make it through that, you probably can get through it. The gabapentin may be of minor benefit in helping through the withdrawal but it is certainly not likely to make a whole lot of difference.

After you get off the mirapex there are a couple of choices. Switching to a Neupro patch may work, restarting the mirapex at a much lower dose and using it in conjunction with low-dose opioid, Kratom, Gabapentin or similar combination may help control your symptoms. Switching to methadone is another possibility. Gabapentin and the others in its family, Lyrica and Horizant, are unlikely to work by themselves.

My situation was similar, augmented on mirapex, and I withdrew with the help of Vicodin and kratom. It was awful. I'm now on 0.125 mg mirapex, Kratom, gabapentin, and medical marijuana. I've been on that about a year, and have shown no signs of augmentation so far.
Blessings,
Holland

ViewsAskew
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Re: Augmentation - Delaying the Inevitable?

Postby ViewsAskew » Wed Jul 26, 2017 7:12 pm

Holland gave excellent advise. Just wanted to add my voice to his - such a terrible situation and it frustrates me to hear it over and over. So sorry you are in it.
Ann - Take what you need, leave the rest



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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.

veldon75
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Re: Augmentation - Delaying the Inevitable?

Postby veldon75 » Fri Jul 28, 2017 5:07 pm

My Neurologist won't give me opioids, she just wants me to go up on Gabapentin to a mega dose, which I don't want to do, I can't function like that! It doesn't work I've tried it before. I have a pain Dr. for fibromyalgia, and arthritis etc, I've had neck and hand surgery and foot surgery that's why I had oxycodone, but Pain Dr. wants to do more neck surgery or injections, pain implant I wanted to stop the Oxy I guess I'll go back to him thanks for your sympathy.

stjohnh
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Re: Augmentation - Delaying the Inevitable?

Postby stjohnh » Fri Jul 28, 2017 5:41 pm

veldon75 wrote:My Neurologist won't give me opioids, she just wants me to go up on Gabapentin to a mega dose, which I don't want to do, I can't function like that! It doesn't work I've tried it before....

the usual situation when doctors are confronted with a patient with difficult problems is to try all known reasonably safe medications first before trying those that are fraught with more difficulties.

The war on opioids has affected lots of doctors and lots of patients, and so it is not unreasonable for your neurologist to insist that you try all other alternatives before considering opioids. On the other hand, if your neurologist absolutely won't prescribe opioids no matter what the situation, you might start thinking about looking around for a different neurologist.
Blessings,
Holland

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Re: Augmentation - Delaying the Inevitable?

Postby badnights » Tue Aug 01, 2017 6:14 pm

Hi veldon, long time no hear! I am sorry to hear things have gotten this bad for you.

I second what holland has said - - you need to think of looking for a different neurologist, or you need to honestly try what she suggests. If you've been on a "megadose" of gabapentin before, and had problems, then it's reasonable to refuse to try it again. But you have to be very specific when you give your reasons why, for example, "I was on 1200 mg for 4 weeks back in 2009. I gained 20 lbs, and my symptoms were still preventing me from sleeping more than 4 or 5 hours a night. I emphasize: it was not effective in stopping my symptoms."

If you haven't taken the dose she recommends, or if she is convinced that it's been a long time and your body might react differently now, you may choose to be the guinea pig that she learns on. You know the gabapentin won't help and will cause problems, but you can't convince her that you know this - so you take it for a while, then describe for her how you feel on it (e.g. "my symptoms are still keeping me awake at night, the sensations aren't as strong but I still have the urge to move so I still can't sleep right; also I've gained 10 lbs in 3 weeks, and my mood is mercurial, ...." - whatever it is you might be feeling). THEN the doctor will realize - "this medication is not doing what needs to be done, and it is causing unacceptable side effects" - and she will try something else.

OR you can expend the energy to look for another doctor - preferably someone from one of the RLS Foundation certified Quality Care Centers.

What else has this neuro recommended in the past? How long have you been seeing her?
Beth - Wishing you all restful sleep tonight
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Aipulu
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Re: Augmentation - Delaying the Inevitable?

Postby Aipulu » Sat Aug 26, 2017 11:27 pm

I may be repeating my story but I would love to have someone with severe augmentation try Naltrexone. Over 2 years ago I was augmenting badly as well as having impulse control issues. I would have gone on an opioid if I could have found a doctor willing to prescribe it. After struggling for 6 months to eliminate or reduce my dose of Mirapex with no success, I went on the drug Contrave for diet purposes. And almost immediately my augmentation cleared up and I was able to reduce my dose of Mirapex from 1.0 to 0.5, which also cleared up the impulse control issue.

Contrave is composed of the antidepressant Wellbutrin and Naltrexone, used by addicts to help them from falling off the wagon. Nalrexone occupies opioid receptors in the brain, which reduces the high one would get from drinking alcohol or taking opioids, as examples. I was already taking Wellbutrin so I have attributed the effect to Naltrexone. Why Naltrexone did this is a mystery. A year or so later I did increase Mirapex to 0.75 but have not increased it since. Not only am I augmentation free, if I forget to take my WED meds I won't have any symptoms until 1 am or later. I am ecstatic over this and I hope others might give it a try to avoid opioids. Naltrexone is considered to be quite safe.

I don't know the optimal dose of Naltrexone for WED. I take a relatively high dose, the level used by addicts. I recently experimented with lowering the dose. I was able to take only 1/4 of the dose with no noticeable impact. Over a year ago I stopped Contrave and to save money purchased Wellbutrin and Naltrexone separately. I have been taking 25 mg of Naltrexone twice a day. I reduced this dose to 12.5 mg once a day. I don't know how much lower I could go before my WED symptoms increased. 3 mg is considered a low dose. I would have to get a prescription for smaller pills to be able to go that low.

Getting back to why this works, I see that low dose (3 mg) Naltrexone is being used to strengthen the immune system. It has been shown to moderate the effects of Krohn's disease and HIV and has cleared up or moderated multiple sclerosis, lupus, some types of cancer. I don't know the mechanism but Naltrexone helps with neurological issues. Therefore I strongly encourage WED sufferers, especially those considering going on opioids to try this safe drug. I am a scientist, albeit a social scientist, so I am quite aware of placebo effects. My success is not a placebo effect. And I noticed the impact almost immediately so you may not have to wait long to determine if it is helping you. Would love to hear from anyone who had tried it.

Aipulu
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Re: Augmentation - Delaying the Inevitable?

Postby Aipulu » Thu Sep 21, 2017 7:47 am

This is a follow up to my discussion of using Naltrexone to relieve augmentation from Mirapex. I am still doing fine, with no augmentation in two years. I am taking Mirapex at 0.75 mg and Nalttexone at 50 mg. I am taking Naltrexone at the level used by addicts because that is the level used for weight loss. A month ago I tried reducing my Naltrexone doseage to see if low dose Naltrexone was more effective. I cut the dose in half, to 25 mg, and taking the half dose in the morning. Two things happened. I started eating more and gaining weight and I fell back into sex addiction, which I previously experienced undiagnosed for 9 years. Both my control over eating and sex came back when I went back to my normal 50 mg dose. What that experience tells me is that Mirapex is likely impacting my opioid neurotransmitter system, causing reduced impulse control; in my case over food and sex. Naltrexone occupies opioid receptors, reducing the high addicts get from alcohol or drugs. In my case it reduced the high I get from get from eating and from sex. I previously thought that Naltrexone allowed me to take Mirapex at a lower level, and that was why my impulse control improved. This is just a new insight for me on what Naltrexone is doing for me. I continue to encourage RLS patients to try Nalrexone (high dose not low dose) when they augment and face the prospect of going on opioids. Naltrexone is considered to be a safe drug, and is certainly safer that opioids.


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