Augmentation- Cold Turkey

Use this forum to discuss any issues associated with Augmentation
Borzoibabe
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Joined: Wed May 23, 2018 6:23 pm

Augmentation- Cold Turkey

Postby Borzoibabe » Sun May 27, 2018 2:30 am

I was taking Requip 3 times a day, then started to have augmentation so my doctor switched me to Neupro patch which I used for over a year even though I was allergic and I had these awful raw red patches all over my body from where the patch was. Then finally I couldn't stand the raw skin and no places left to put a patch that wasn't raw and RLS symptoms in the morning so she put me on extended release Requip which worked well for about 6 months. I guess in total I have been taking DA for around 5 years. Then things got really bad and I had such awful RLS all the time I wasn't able to sleep or sit any time. My neurologist never called me back after repeated calls so finally I called my family doctor and she gave me a RX for clonzapam and Mirapex. I have been afraid to try the Mirapex because it's another DA and the clonzapam doesn't stop the jumpy legs it just makes me fall on my face when I try to get up and walk around making my life even worse. So I went off all of the drugs cold turkey and I'm pretty miserable right now. I've slept maybe an hour a night on some night, some nights not even 10 minutes according to my Fitbit. It's been 5 nights so far and I'm incredibly irritable but afraid of being addicted to things like oxycodone even more than what I am going through. I guess I don't know why I am posting, just feeling sorry for myself here and know that someone out there reading this understands. I feel all of you have better advice and don't trust my doctors to do the right thing. BTW, I tried gabapentin for a few months for my Fibro and it made my brain mush- couldn't remember how to get home and my husband said at one point that he saw me feed the dogs twice in a row and I didn't even know it and was starting to feed them a third time because my brain had been so messed up. Don't want to go back there again even though it was the best Fibro drug I ever took. I feel kind of without options here and jumping out of my skin.

stjohnh
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Location: Palo Alto, California

Re: Augmentation- Cold Turkey

Postby stjohnh » Sun May 27, 2018 2:37 am

Borzoibabe, welcome to the RLS Forum Community. You'll find lots of folks here who understand your situation exactly. Many of us have been in exactly the situation that you're in.

I augmented on Mirapex a couple of years ago, took Neupro patches for several months but stopped because of augmentation and rashes.
Anyway, with the help of lots of folks here and learning a lot more about RLS, I am now in an
infinitely better situation than I was previously.
If it has been five nights since you've taken any RLS medication, you are probably just about ready to turn the corner. Probably tonight and the next couple of nights you will get a bit more sleep, still not a lot but better.

You absolutely did the right thing by stopping the dopamine agonist (Requip). You have definitely augmented and the only way to solve that problem is to stop the medication.

Congratulations on making it for five nights, this withdrawal from dopamine agonists like Requip is probably the worst experience you have had in your life. Keep up the good work. It will get better.
If you have any opioids at home they can make the withdrawal quite a bit better, it is very rare for patients with RLS to become addicted to opioids. The doses needed to treat RLS are considerably lower than those people who have chronic pain problems and need higher doses.
Last edited by stjohnh on Sun May 27, 2018 3:01 am, edited 2 times in total.
Blessings,
Holland

Rustsmith
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Re: Augmentation- Cold Turkey

Postby Rustsmith » Sun May 27, 2018 2:54 am

To expand on Holland's comments about addiction. In a paper on the use of opioids to treat RLS that written by many of the RLS earlier this year. They reported on a Blue Cross study of their patients who were placed on opioids for various reasons. True addiction occurred at a rate of 8 per 1000 patients (0.8%) when the patients were pre-screened for prior addictions (such as alcohol and gambling). The authors pointed out that the opioid doses in the Blue Cross study were much higher than those typically used to treat RLS. So they concluded that the chance of addiction when opioids are used to treat RLS will be lower, they just could not quantify how much lower it would be than 0.8%.

So, there is a 99.2% probability that addiction will not be a problem if you end up having to take a low dose opioid. You will become dependent upon them, but then you have already experienced and even worse dependency to dopamine agonists. Besides, there are lots of people who are dependent upon various meds to maintain a reasonable quality of life. No one is going to blame a diabetic for being dependent upon insulin, or heart patients on they blood thinners, etc. It is just that our fallback med is one that is abused by some (just like alcohol).
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.

legsbestill
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Location: Dublin Ireland

Re: Augmentation- Cold Turkey

Postby legsbestill » Sun May 27, 2018 9:14 am

I really feel your pain. Huge kudos for getting so far all on your own. I reckon Holland is right and the worst is behind you. Like many on here I have been where you are and can verify that it is one of the hardest things I have done. I did it without opioids but if I were to do it again and I could access opioids I would take them to get through it. I ended up taking OxyContin for a while to help get me settled down but not until about 3 months after I finished the dopamine agonists. I don’t take an opioid at the moment.

I would just like to let you know that in spite of the misery it was completely worthwhile. I felt myself for the first time in years when I finally quit dopamine agonists.

Good luck and keep posting

Belsheart
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Joined: Thu May 10, 2018 2:29 am

Re: Augmentation- Cold Turkey

Postby Belsheart » Sun May 27, 2018 11:20 am

I am on day 3 of tapering off of mirapex. I'm down to half a pill at night. Doctor started me on lyrica. Can't take opiods due to need for oxygen at night and opoid use could be a respiratory suppressant. Allergy to tramadol. This is rough, but I'm determined to get off. I'm concerned about taking lyrica. Any thoughts?

stjohnh
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Location: Palo Alto, California

Re: Augmentation- Cold Turkey

Postby stjohnh » Sun May 27, 2018 1:52 pm

Belsheart wrote:I am on day 3 of tapering off of mirapex. I'm down to half a pill at night. Doctor started me on lyrica. Can't take opiods due to need for oxygen at night and opoid use could be a respiratory suppressant. Allergy to tramadol. This is rough, but I'm determined to get off. I'm concerned about taking lyrica. Any thoughts?


Welcome Belsheart. It doesn't look like you were properly welcomed to the RLS Forum when you made your first post a few weeks ago. I'm glad you found this forum, there are lots of people here that can help.

My first comment coming from your first post back on May 9th, are you on iron? You absolutely need to get your ferritin up, your doctors and other people that have been advising you that your ferritin is fine is absolutely not correct. You should try to get it above 75 and preferably above 100.

What dose of Mirapex are you currently taking, and exactly why are you trying to get off it? Did you augment? Some other problem with it?

The inability to take opioids due to night time oxygen and the possibility of respiratory suppression certainly increases the difficulty of dealing with your problem. If the reason you're trying to get off the Mirapex is because of augmentation, then Lyrica has a very low likelihood of helping much. It's just not strong enough.

Another thought is the possibility of using kratom. The respiratory depression problems associated with traditional opioids are caused by the opioid stimulating beta arrestin pathways. Kratom is an herb, used by quite a number of people with RLS. It has some effects similar to traditional opioids, however, in distinction to traditional opioids, it does not stimulate beta arrestin pathways.
Blessings,
Holland

legsbestill
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Location: Dublin Ireland

Re: Augmentation- Cold Turkey

Postby legsbestill » Mon May 28, 2018 7:44 am

Belsheart, it is difficult to know what to say. Holland has given all the advice I would but just wanted to wish you all the best. I got off mirapexin without opioids. It is hard but I have no regrets. I felt so much better once I got the drug out of my symptom. In your shoes I would give Kratom a try. I would also focus on iron. Thinking of you and sending you best wishes for the next few days. Good luck.

badnights
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Re: Augmentation- Cold Turkey

Postby badnights » Wed May 30, 2018 3:59 am

Borzoibabe wrote:. It's been 5 nights so far and I'm incredibly irritable but afraid of being addicted to things like oxycodone even more than what I am going through. I guess I don't know why I am posting
There doesn't need to be a specific question for you to post here, lots of us post just because we need to tell someone what's going on and no one else in our worlds understands.

I hope you've made it through the worst of your withdrawal by now. I greatly admire your courage and conviction and hope you are OK.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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

badnights
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Re: Augmentation- Cold Turkey

Postby badnights » Wed May 30, 2018 4:13 am

Hi Belsheart - - ditto what Holland and Legsbe said. How much is your current Mirapex? I think from your other post you meant that you would be finished the taper in one week total, is that correct?

I would find a doctor who knows more about WED/RLS, or first try bringing the Foundations Medical Bulletin for Healthcare Practitioners to your doctor. Print it out and read it yourself, first. Highlight the parts about ferritin, and about augmentation (is that why you're stopping the Mirapex?).

Try taking the iron with some food in your stomach, if it causes pain. Your body will not absorb as much, but it will still absorb some, and you might be able to increase the dose. Take vitamin C at the same time as the iron, because that helps absorption. If it's not pain but constipation that's the problem, that can be dealt with by changing your diet to include lots of vegetables, and if necessary eating raw beet, taking a tablespoon of oil, etc. (there are a number of remedies if you google it). It['s better to take the iron and deal with the issues than not to take it.

People with WED/RLS seem unable to keep iron stores in the body, or in parts of the body, especially the brain, and that lack of iron is directly related to symptom severity (though the details still aren't known). So - we need to keep taking iron, and it's worth it to try to find a way that we can tolerate it.

Lyrica is not likely to be much use if you've augmented on Mirapex, as Holland has said, at least not until your body has "re-set" a week or so after you finish your taper. But it can be a useful medication for some of us. If you are prone to depression, be aware of your mood while taking it; it causes or exacerbates depression in some people.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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

Belsheart
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Joined: Thu May 10, 2018 2:29 am

Re: Augmentation- Cold Turkey

Postby Belsheart » Sat Jun 02, 2018 4:01 am

I am thankful for these thoughtful and encouraging posts. I have followed up with the doctors at Emory sleep center, and i will be starting iron infusion soon. Thank goodness. I am down to .125 of pramipexole. I began tapering off due to augmentation. I will stay at this dose for another week and then cut it in half again for weeks. I've been reading up on krakom and also edible cannabis. Also the FDA approved foot wrap restiffic.
I take several hot baths a night and usually manage to sleep from about 6 am until 10 am.... it's a grueling time, but worth it to get off of pramipexole.

badnights
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Re: Augmentation- Cold Turkey

Postby badnights » Mon Jun 04, 2018 5:52 am

Belsheart wrote: it's a grueling time, but worth it to get off of pramipexole.
It sounds like you're on the right road. A rough one, to be sure, but you sound like the kind of person who will see it through. You'll finally get back some of the quality of life you've been missing out on.

The worst part will probably be after your next dose decrease. At that point, it might be wise to stop the taper and quit altogether to get it over with. if you're not getting any sleep at all, you're definitely at that point.

When things are dreadful, it's hard to think clearly. You might forget why you're doing this in the confusion of extreme torture and sleep loss, so be sure to keep reminding yourself. And remind yourself that it ENDS. The bad part only lasts a number of days. And when it's over, everything will be better than before.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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

Belsheart
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Joined: Thu May 10, 2018 2:29 am

Re: Augmentation- Cold Turkey

Postby Belsheart » Mon Jun 04, 2018 3:19 pm

I was just wondering if i should stop completely. I guess I've adjusted to the lower dose because i slept last night!! Perhaps the lyrica has kicked in. I just feel low level tingles in arms and legs. I'm sure once i stop the last dose, symptoms will return. I'm babysitting my granddaughter this week. Will wait until after that to decrease again or stop.
Thank you for such a thoughtful and kind message. I will re-read it when the going gets tough.

badnights
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Re: Augmentation- Cold Turkey

Postby badnights » Thu Jun 07, 2018 4:32 am

How much Lyrica are you taking?
It's nice that you're getting some sleep. You could decide to keep the slow taper so as not to rock the boat. Or you could stop cold turkey and weather the storm to get it over with. As long as you;re getting a reasonable sleep, no need to stop more quickly.
Good luck :)
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION & IRON:
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

Belsheart
Posts: 9
Joined: Thu May 10, 2018 2:29 am

Re: Augmentation- Cold Turkey

Postby Belsheart » Thu Jun 07, 2018 1:24 pm

Im on 200 of lyrica (doc substituted that for 600 gabapentin). I'm thinking Monday i will stop the rest of the miripex. Oy!

Borzoibabe
Posts: 3
Joined: Wed May 23, 2018 6:23 pm

Re: Augmentation- Cold Turkey

Postby Borzoibabe » Sat Jun 09, 2018 3:52 pm

Hi and thanks for the welcome. An update. RLS is pretty severe and went back to my neurologist that I have always adored and she annoyed me pretty bad. I asked her for a referral to a doctor in the same big teaching hospital that she works in that is supposed to be an RLS specialist. She told me that he can't do anything that she doesn't do and the wait is 3 months or more. It's true about the wait and he won't see me without a referral. But I didn't like her attitude and she had no sympathy for my going of DA and what I have been going through. She says it's my agitation that is causing my RLS and no sleep. I said it's the augmentation and lack of sleep day after day that is causing my agitation. She wouldn't listen and I was tired of trying to get her to see my point of view and gave up.
The good news is that I started on medical marijuana and it's been pretty good so far. Not perfect but about an 80% improvement in symptoms and I can sleep about 5 or 6 hours at a time until the RLS wakes me and I can't stay in bed any more. If I take more MM then I can get back to sleep but usually I don't. It's all new so I'm just trying to figure out what product and how much at this point. Now I'm hoping I can afford it and trying to figure out what I do when I leave my state because apparently it's not legal for me to take it across state lines or on a plane or cruise ship. I find that interesting in itself.


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