Seeking sleep months after going off Mirapex

Use this forum to discuss any issues associated with Augmentation
Penelope2017
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Joined: Mon Jul 03, 2017 9:56 pm

Seeking sleep months after going off Mirapex

Postby Penelope2017 » Fri Sep 08, 2017 4:44 am

In April of 2017 I went off of Mirapex due to extreme augmentation. Since that time, with my Doctor's guidance, I have tried many medications but haven't found a combination that works for me. I tried the relaxis machine. At first it seemed to help and then it made my rls worse so I returned it.
The company appears to be a good one. As promised, they returned my money. I wish the relaxis had worked. I would love to find help that isn't pharmaceutical.
For a short period Methadone combined with Lyrica worked. Then it stopped working and Methadone became completely useless. I'm also not convinced that Lyrica helps me but my doctor seems to think it does. I'm taking 375mg of Lyrica. I also take gabapentin and now have added oxycodone. Because I get so little sleep, I'm constantly exhausted. Needless to say this has affected my daily life in a negative way. I feel like I get nothing done. Fortunately I'm retired so my days of going to work exhausted are over.
After many months I finally have an appointment at John Hopkins in October. I'll be traveling fairly far as I live in NW Ohio. I'm concerned that this appointment will be a waste of my time but I don't know where else to turn. I'd love to hear from anyone who's gone there for help with their rls.

ViewsAskew
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Re: Seeking sleep months after going off Mirapex

Postby ViewsAskew » Fri Sep 08, 2017 5:48 am

Sounds like a miserable place! Not sure how many of our member go there. Several over the years, but only 2 or 3 I can think of right now. Hope they reply.

I can say that if that was the closest RLS Quality Care Center that I would absolutely go there.

What seems to keep you from sleeping - is it the urge to move, actual movements, insomnia, (all of the above) or something else? Is there any time of day that is better where you can grab even a few minutes?
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: Seeking sleep months after going off Mirapex

Postby badnights » Sat Sep 09, 2017 4:08 am

A number of our members have gone there. One in particular suffers from severe WED/RLS and had tried almost every medication; they managed to help him. I would go there in a heartbeat if I was in the US. I doubt it will be a waste but I can see how you fear it would be, after all you've been through lately.

How much methadone were you using and in what way did it stop working? did the symptoms begin to overwhelm it? And when were you taking it in relation to stopping Mirapex? If you were still augmented it might have been ineffective at lower doses; but I don't know how to explain that it worked and then it didn't.
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

Penelope2017
Posts: 3
Joined: Mon Jul 03, 2017 9:56 pm

Re: Seeking sleep months after going off Mirapex

Postby Penelope2017 » Mon Sep 11, 2017 3:28 pm

ViewsAskew wrote:Sounds like a miserable place! Not sure how many of our member go there. Several over the years, but only 2 or 3 I can think of right now. Hope they reply.

I can say that if that was the closest RLS Quality Care Center that I would absolutely go there.

What seems to keep you from sleeping - is it the urge to move, actual movements, insomnia, (all of the above) or something else? Is there any time of day that is better where you can grab even a few minutes?


I hope this is the correct way to reply. Usually the urge to move keeps me from sleeping. This has gotten worse after having some relief. Also on occasion insomnia plays a role. Sometimes I can nap during the day. That helps a lot with my mood.

pamhb
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Re: Seeking sleep months after going off Mirapex

Postby pamhb » Mon Sep 11, 2017 4:57 pm

Hey there. I have been in a similar position for the past year. I was on dopamine agents for about 18 years, and augmented to the point where I was experiencing continuous jack knife spasms when I attempted to transition to a new medication. I ended up on a cocktail of Neupro, gabapentin, and clonazepam while local doctors tried to sort out what was wrong with me (they had trouble believing it was augmentation, because they didn't have enough experience with the disease). I was then referred to a local sleep specialist -- we both agreed I needed to come off of current medications and see what was then left. I went through a washout period where I was put onto a small dose of oxycodone, and taken off the rest of my medications.

At the end of the washout, my jack knife spasms had disappeared, but I was still left with severe refractory RLS. My local sleep specialist was hoping that I could manage on 10 mg a day of oxycodone, supplemented by pneumatic leg pumps as a non-prescription therapy. It wasn't enough. My sleep just kept getting worse. He then decided to refer me out to the Mayo Clinic. Because I'm Canadian, it meant I had to do it entirely on my own dime. I too wondered if it was going to be worth the trip.

It was. The specialist that I saw had tons of experience, and has seen it all. He was able to tell me that I was under-medicated, and I needed to be on a higher dose of the oxycodone. Should I build up a tolerance to the oxycodone, then the next step will be methadone. What you will get by your visit to John Hopkins is a realistic assessment, with some final answers for this point in time. You will get recommendations for pharmaceutical treatment. What you are not likely to get is recommendations for non-pharmaceutical options, although he might be able to answer any questions you have based on patient experience. Non-pharmaceutical options you have to explore on your own, with help from this forum. If you sign up as a member to this site, and explore the webinar section, you will find various options discussed there. I use pneumatic leg pumps, which control the RLS fairly successfully in my lower legs, but not in my thighs and shoulder. The Relaxis pad did not work for me either. Dry-needling trigger points in my shoulder is helping to control RLS in my shoulder. If ultimately that doesn't work, I'll most likely move on to light therapy.

I also discussed medical marijuana with my Mayo Clinic specialist. He had no personal experience, as Minnesota doesn't permit medical marijuana use, but said that he had a colleague in California who was using it with successfully with certain patients. I'm going to try it next, as part of my journey.

I am now on 15 mg of oxycodone, which is allowing me to get 6 hours of sleep a night (albeit disrupted). Based on the experience of forum users, I hope at the very least be able to improve my sleep architecture with medical marijuana. I am grateful for the advice of my Mayo Clinic specialist, as I feel like I have been given my life back, with what was a fairly simple fix.

Do lots of reading about RLS before you go, and bring your list of questions. This is your one chance to have the sole and undivided attention of someone who is most likely to be able to answer them. Good luck!

Penelope2017
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Joined: Mon Jul 03, 2017 9:56 pm

Re: Seeking sleep months after going off Mirapex

Postby Penelope2017 » Mon Sep 11, 2017 5:23 pm

Thanks for sharing your experience with me. I am also going to ask about Medical Marijuana. Not sure how that would work since Ohio is behind the curve on this. Have you stayed in touch with your doctor from the Mayo Clinic?

pamhb
Posts: 97
Joined: Tue May 01, 2007 1:11 am
Location: Canada

Re: Seeking sleep months after going off Mirapex

Postby pamhb » Mon Sep 11, 2017 6:01 pm

I just saw him last month. I asked what my status would be with him; he said he was simply a medical consult for me, and that I wouldn't see him again unless some further advice was required. So I don't anticipate talking to him again unless his original advice quits working.

Sorry to hear that Ohio has not yet licensed medical marijuana. It is helpful for so many conditions. Failing to recognize its benefits forces too many people with legitimate medical problems to rely on street vendors. Much better to control its legitimate use, as we do with other medications. You might want to check to see if Sativex has been licensed in the US yet by the FDA; it is a pharmaceutical preparation of anti-spasmodic cannabis extracts, which can be prescribed by your regular physician.

Cheers!

Rustsmith
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Re: Seeking sleep months after going off Mirapex

Postby Rustsmith » Mon Sep 11, 2017 6:26 pm

Penelope2017, although I live in Colorado, I am an adjunct professor at Ohio Univ so I make a couple of trips to Ohio each year. I had such high hopes for the marijuana initiative at recent election. I guess they managed to muddy up the ballot question with all the strange commercial restrictions last time. Hopefully it can pass the next time around since it seemed like the rest of discussion was so positive.

Pamhb - As for Sativex, it is not currently approved in the US. Marijuana (and hemp) in any form is still technically against federal law in the US, but Congress passed a funding law that prevents enforcement in states where it has been legalized. As such, importing or even transporting Sativex across state lines will still VERY illegal. Maybe this Congress will eventually fix that as well, but they have too many higher priority things to argue about these days. :roll:
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.

pamhb
Posts: 97
Joined: Tue May 01, 2007 1:11 am
Location: Canada

Re: Seeking sleep months after going off Mirapex

Postby pamhb » Mon Sep 11, 2017 6:49 pm

That makes sense about the Sativex. If it's a product that consists of cannabis extracts rather than a synthetic derivative, it would need to be removed from the controlled substances list in order for the FDA to give its approval. It's approved by Health Canada here in Canada, but likely because we have a national program for medical marijuana. And yes, Congress is indeed busy with other things! The rest of the world is watching with a great deal of fascination...

Rustsmith
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Re: Seeking sleep months after going off Mirapex

Postby Rustsmith » Mon Sep 11, 2017 7:45 pm

Part of the reason why we moved to Colorado was so that both my wife and I could get access to MMJ. She has MS and we had been closely watching all of the research in the UK that involved the evaluation of Sativex for MS patients. When we came for a visit the first time, one of our first stops was a recreational marijuana dispensary. She insisted that I had to try it for my RLS. I tried a THC candy and slept past sunrise for the first time in several years. But I could not get her to try it on that trip. But since that time she has become a regular user of CBD tinctures and says that they are more effective for her spasticity than any prescription med that she has ever been given.

As for Congress, I did a lot of international travel before I retired and frequently had to explain the political process in the US. The electoral college process for electing the president was especially difficult. But I am grateful that I am not traveling like that anymore because there is no way that I would ever be able to explain US politics today (as if anyone can :) ).
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.

badnights
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Re: Seeking sleep months after going off Mirapex

Postby badnights » Wed Sep 13, 2017 4:50 am

A quick clarification to a small part of pamhb's post:
Non-pharmaceutical options you have to explore on your own, with help from this forum. If you sign up as a member to this site, and explore the webinar section, you will find various options discussed there.
It's not clear from pam's wording that she is referring to becoming a member of the RLS Foundation, which costs a small amount and gives you access to the webinars and publications. Becoming a member of this discussion board is a separate thing; it's free and does not give you access to the full RLS Foundation website. It's potentially confusing because the RLS Foundation does host this board.
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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