Broken ankle second night on methadone

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erinmaryuhoh
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Broken ankle second night on methadone

Postby erinmaryuhoh » Mon Feb 26, 2018 3:36 pm

Hi RLS community! My mom has had RLS for 4 decades, in the past few years has suffered from some severe augmentation (she was on max Mirapex and 6mg of Neupro in addition to 5 other meds for RLS), saw a doctor at Hopkins in November and finally after a lot of pain and suffering managed on Friday to get off all DAs and the Norco she was on. Per Hopkins' doc's recommendation, Saturday night was her first night on methadone at 2.5mg. Sunday night (last night) was her second and she did not sleep at all during the night (which was happening consistently as she was tapering off the DAs and Norco). Early this morning she fell asleep standing up, hit her head (which is thank goodness fine) and fractured her ankle in two places. Doctors are recommending ankle fracture surgery (read: ankle will need to be immobilized for a few weeks after surgery). Does anyone have any experience with managing severe RLS while starting a new med like methadone and while recovering from such an injury? Or any ideas of resources we could consult? As you can imagine, the local docs have no sense of what RLS actually is and how it is impossible to sit when her legs are out of control. Any suggestions are greatly appreciated!

stjohnh
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Re: Broken ankle second night on methadone

Postby stjohnh » Mon Feb 26, 2018 4:31 pm

I fractured my ankle a couple of years ago in 3 places, had surgery with screws and plates and so forth. Recovery was uneventful as I was given Percocet for pain. My RLS was not as severe at the time and I was not on opioids for RLS, so the Percocet managed the pain fairly well and the RLS just fine.

If they give her a short-acting opioid for pain, she will likely tolerate the RLS without too much trouble. Methadone does require considerable time for titration and that may have been part of the trouble
Blessings,
Holland

Rustsmith
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Re: Broken ankle second night on methadone

Postby Rustsmith » Mon Feb 26, 2018 4:38 pm

erinmaryuhoh, every person is different. But 2 yrs ago, I made the same sort of transition from Neupro and then 1g/day of Mirapex to methadone, my doctor started me out at 5mg with the instructions to move up to 10mg after 5 to 7 days. I made that transition and found that it was too much, so I cut it back to 5 with an occasional bump up to 7.5 when things get consistently bad for a few days. Since that time, I had a neurologist familiar with RLS (not my doctor) tell me that the "normal" dose for methadone is 10mg and that he was surprised that I was getting by with 5. And in case you think, yeah, but I am a male so I am larger than your mother, I am a runner so although I am 5'10", I only weight 130 lbs.

I will add to what Holland said, methadone has a half life of around 2 days, so it takes a while for it to build up in your system to the "normal" level. Your mother was probably still in that buildup. However, when I started out, I could feel the effects of the methadone immediately. The difference is that I did not go through the DA washout that the docs at Hopkins make their patients go through. I simply transitioned from one to the other.
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.

ViewsAskew
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Re: Broken ankle second night on methadone

Postby ViewsAskew » Tue Feb 27, 2018 10:07 pm

It takes me about five days to get to a reasonable level of methadone when I reduce it and need to restart it. For those five days, I never have good control. 2.5 mg is a teeny amount, but could be enough - just too early for it to work as well as it will when it builds up.
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: Broken ankle second night on methadone

Postby badnights » Wed Feb 28, 2018 5:37 am

I don't have anything to add about the methadone, but I have things to say about the surgery. It is important that all doctors and nurses who will be involved with the surgery be aware that she has WED/RLS and what that means. The anesthesiologist, especially, should know which substances will make her symptoms worse (see the list on the Medical Alert Card - instructions below). The surgeon should know what her symptoms are, what medication she's on now, the augmentation & withdrawal that I imagine she is still recovering from. Each person who meets with her before the surgery needs to be told - - don't assume they will read it on the chart and understand what it means.

The Foundation has a brochure and checklist for WED/RLS patients about to have surgery. They are very good, and combined with all the other publications about WED/RLS you can get from the Foundation, well worth the membership fee of (25? 35 dollars? I forget. Something like that). The surgery brochure, hospitalization checklist, and the Medical Alert Card are on the Publications page at https://www.rls.org/member-portal/publications - the Card is near the top, the Surgery and Hostpitalization ones are farther down. At the very bottom is a section for healthcare providers; you should also grab a copy of Surgery and RLS from there and print a copy for each of the doctors and nurses.

If you can't become a member for financial reasons, enquire about a scholarship membership at info@rls.org. I am not sure if they still do it, but they used to. And if that doesn't help you, ask on here again and one of us will type the most important information for you, like the substances they must not give her in the IV (many anti-nausea drugs, for instance, and anti-histamines).

managed on Friday to get off all DAs and the Norco she was on. Per Hopkins' doc's recommendation, Saturday night was her first night on methadone

Are you saying that your mom's last night taking any DAs was only last week? I imagine there was a long taper, but she could still be feeling the effects of withdrawal (that is, worsened symptoms). In common experience it takes a couple of weeks minimum, but longer for many people, and many months for a few. I don't know how an extended taper would affect that withdrawal period, but a shorter taper over a couple of weeks doesn't seem to shorten it. (This is just the impression I get from talking to other people on this board.)
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

erinmaryuhoh
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Re: Broken ankle second night on methadone

Postby erinmaryuhoh » Wed Mar 07, 2018 2:07 pm

badnights wrote:I don't have anything to add about the methadone, but I have things to say about the surgery. It is important that all doctors and nurses who will be involved with the surgery be aware that she has WED/RLS and what that means.

Are you saying that your mom's last night taking any DAs was only last week? I imagine there was a long taper, but she could still be feeling the effects of withdrawal (that is, worsened symptoms). In common experience it takes a couple of weeks minimum, but longer for many people, and many months for a few. I don't know how an extended taper would affect that withdrawal period, but a shorter taper over a couple of weeks doesn't seem to shorten it. (This is just the impression I get from talking to other people on this board.)


Thank you so much for your response, Beth. You are definitely right, re: surgery. When she first got to the hospital, doctors were asking RL-what? It took a lot of advocacy to get them to take it seriously and to restart the methadone (it took 4 days!). Re: DAs, that Friday had been 3 weeks off the DAs, and 2 days off Norco. Knowing that the withdrawal symptoms may last much longer is very helpful and she struggles to get some consistent sleep.

Update is she had the surgery, and is now on day 6 after restarting methadone, which is happening alongside short-acting opioids for surgery pain. It was really helpful to hear from everyone here that methadone doesn't work immediately (thank you, Holland, Steve and Ann!!) and that it is possible to get through surgery recovery while having RLS (thank you, Holland!)! Last night was the first "good" night on methadone without her RLS keeping her up too much. Here's to hoping frantic RLS has not impeded her ankle from healing!

ViewsAskew
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Re: Broken ankle second night on methadone

Postby ViewsAskew » Thu Mar 08, 2018 8:25 am

That is good news!

Sounds like she is in good hands with you helping - doing research, advocating for her. It saddens (and angers) me, but doesn't surprise me, to hear that people still need to do such advocacy with the nurses, doctors, and other staff. I hate to think of what would have happened to your mom without you there.
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: Broken ankle second night on methadone

Postby badnights » Fri Mar 09, 2018 8:54 am

I hate to think of what would have happened to your mom without you there.
Indeed.
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

TiredGrammy
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Joined: Sat Jan 27, 2018 3:04 am
Location: Near Chicago, Il

Re: Broken ankle second night on methadone

Postby TiredGrammy » Tue May 01, 2018 8:11 pm

Hi All - I am the mom discussed in the conversation thread above. I can't thank you enough for your support - through my amazing daughter - as I struggled to make it through each day of recovery. At first it felt as though my leg was having frequent seizures. But I was in too much pain or on too much pain medication to advocate for myself. If it wasn't for the information and support and information my daughter received and the advocacy she and my equally amazing husband provided, my recovery would have been quite different. (She's right by the way - the VAST majority of the medical folks I encountered had no idea.)

9 weeks post accident, I am finally free of both the cast (7 weeks) and the boot (2 weeks)....and I am sleeping pretty consistently. I am only taking Methadone (10 mg) and Gabapentin (1500 mg). I love the sleep, don't get me wrong. But I want to sleep all day. If I ever sit down, my eyes want to slam shut. When I tried cutting back to 7.5 mg Methadone one night, I had a lot of RLS symptoms.

I welcome your thoughts, and I thank you.

Rustsmith
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Re: Broken ankle second night on methadone

Postby Rustsmith » Tue May 01, 2018 8:19 pm

Glad that we could be of help following your accident.

As for your current sleep issues, it is probably the gabapentin rather than the methadone that is causing you to want to sleep. The methadone helps with your RLS movement issues and the gabapentin's primary role is to allow you to sleep more normally than is usual for us. Therefore, you should talk to your doctor about first cutting back on the gabapentin and if that helps with your daytime sleepiness, then you can consider cutting back on the methadone. Eventually, you will need to find that happy borderline where your RLS is almost, but not totally under control. The experience for many of us is that you want to strive to control your RLS about 95% of the time. 100% control means that you are taking more medicine that is necessary and that increases the chances that you will develop some sort of tolerance.
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.

ViewsAskew
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Re: Broken ankle second night on methadone

Postby ViewsAskew » Wed May 02, 2018 7:24 pm

Welcome, TiredGrammy. So heartening to hear about your amazing family.

Per the sleeping all day - I have taken both meds...and both make me want to sleep all day. I honestly haven't had a perfect solution. Many people say you get used to gabapentin (and most seem to), but some of us seem not to.

Steve's idea to cut the gabapentin - always with doctor's blessing - is a good one. And his point about how much to take is an important one. Another option is to try a shorter acting opioid.
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.


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