new member - transitioning from ropinirole to gabapentin

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Polar Bear
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Re: new member - transitioning from ropinirole to gabapentin

Post by Polar Bear »

Please do be careful of your ropinerole dose. The max is considered to be 1 mg daily. You recently went from 1mg to 1.25mg and are now at 1.5mg you are at 50% over max - and still suffering RLS symptoms. I think you need to reconsider whether you should be taking ropinerole.
Bearing in mind that you have already previously augmented on 1mg ropinerole.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stjohnh
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Re: new member - transitioning from ropinirole to gabapentin

Post by stjohnh »

Polar Bear wrote:
Wed Mar 24, 2021 12:01 pm
Please do be careful of your ropinerole dose. The max is considered to be 1 mg daily. You recently went from 1mg to 1.25mg and are now at 1.5mg you are at 50% over max - and still suffering RLS symptoms. I think you need to reconsider whether you should be taking ropinerole.
Bearing in mind that you have already previously augmented on 1mg ropinerole.
I agree with Betty (Polar Bear). Sounds like you are already augmenting again. Time to get off the ropinerole.
Blessings,
Holland

ViewsAskew
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Re: new member - transitioning from ropinirole to gabapentin

Post by ViewsAskew »

Agreed with both of the above. That is a high dose of ropinerole given what we know today (vs 15 yrs ago when it was approved).
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.

bhud
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Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

I took 1.5 mg of Ropinirole again tonight. I got about 5 hours sleep last night. I’ll drop back to 1 mg tomorrow, Saturday night. Doctor appt on March 30 so just doing what I can to get sleep so I can function. Getting busy with work so I don’t have option to sleep at odd times like 6 am to 10am. Back in November and December I could do that when I was reducing dosage of Ropinirole.

badnights
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Re: new member - transitioning from ropinirole to gabapentin

Post by badnights »

Getting off of ropinirole will consume all your time and energy for a number of days. It is best to clear your schedule, prepare some meals ahead, and expect nothing of yourself during the time your body is getting used to having no ropinirole fed to it. It can be a brutal adjustment - basically, going without any sleep at all for one to three nights, and very little sleep for a few days after that, all the while experiencing pronounced symptoms (and you know what that's like!).

Despite that, it will be the best thing you've ever done for yourself if you do it. Best is if your doctor will give you a prescription for a couple of weeks of a potent opioid to get you through it humanely.
Beth - Wishing you a restful sleep tonight
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bhud
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Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Once again it has been several months since my last post. It is helpful for me to capture my thoughts and current status. I welcome any input but I don't have a question in this post just an update. Thanks again to RLS Foundation for providing this forum and to everyone who has given me advice along this continuing journey.

In April I started taking 1.25 mg of ropinirole with .5 mg of clonazepam. Through trial and error I have found that taking all the meds at the same time and at the same time each night is the most effective approach for me. I take them at 9 pm and then lay down around 9:30 to read or play a word game until I get so tried I cannot continue. This takes between 30 minutes to 1 hour most nights. Most nights I am able to sleep until 6 to 7 am giving me at least 7 hours of sleep. I also try to avoid sitting for more than 45 minutes. We drove to Florida for a vacation and I drove over 10 hours with just one stop. That was a Big mistake and it took me almost a week to recover and get back on a good sleeping routine.

I meet with my neurologist every 3 months to touch base but can request appointment sooner if meds stop working. If I start having afternoon symptoms or am unable to sleep on these meds, the next step is using opioids. My doctor is comfortable using them if necessary and has several patients who have been using them for years. I am surprised the 1.25 mg of ropinirole with .5 mg of clonazepam is working but thankful for the relief. This summer I may try to reduce dosage of ropinirole to 1 mg but hesitant to try it now as my work/travel schedule is busy.

I am also meeting with a counselor today. Not really expecting this to resolve my rls. I have put off meeting with a counselor for several years but I know I need to improve the way I communicate with my wife and the way I deal with stress. We just celebrated our 31st wedding anniversary and I don't want to coast into our next 30 years together. 8)

badnights
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Re: new member - transitioning from ropinirole to gabapentin

Post by badnights »

Thanks for the update! It's always good to hear how people are doing.

Counselling can work wonders, especially if you go into it with a wide open mind (and your counsellor is a good fit for you). Good luck and enjoy what you get out of it :)
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

bhud
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Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Sharing an update for my benefit as well as anyone who may glean some hope or direction from my journey with RLS. The counseling did help with my communication with my wife and uncovered some of my wrong assumptions. It turned into marriage counseling, and we attended the counseling sessions together.

I have reduced to 1 mg of ropinirole combined with .5mg of Clonazepam. I have found taking a .25mg dose of ropinirole around 7 pm and the remaining .75 mg around 9 pm to be effective. Although, the last two nights I have had a harder time falling asleep and staying asleep. It seems the symptoms are starting earlier so I may move my dose of .25 mg ropinirole to 6:30 pm.

I meet with my neurologist in a few weeks and the plan is to add a low dose opioid while gradually coming off ropinirole and Clonazepam. If this is effective, I am probably looking at ongoing use of opioid to control my RLS. I wish I could get off all the meds.

I am starting training for a 1/2 marathon in late May. I have dropped off my exercise routine and need a goal to get me going again. I am also taking these steps to naturally boost my dopamine.

1. Continuing to get more educated on RLS and treatment options.

2. Taking personal responsibility and looking for creative solutions. I am resisting the feelings of victimhood. It is uncomfortable, but taking personal responsibility helps me feel a greater sense of freedom in the long run.

3. Engaging in meaningful and pleasurable activities by focusing of parts of my work that I love, exercising regularly, and having fun with my family.
4. Bonding with a group of friends gives me the brain-boosting power of social connection. Spending time in a positive community of like-minded people is a wonderful way to boost my bliss hormones, such as oxytocin. I consider this forum as one part of my friend group.

ViewsAskew
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Re: new member - transitioning from ropinirole to gabapentin

Post by ViewsAskew »

Your post made my day. Thanks.
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.

bhud
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Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Glad to hear my post encouraged you. You have helped so many of us on this forum with your advice.

bhud
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Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

Here are my current meds for my RLS: 7.5mg hydrocodone, .5 mg ropinirole, 1 mg clozapine. Sleep varies from 4 hours up to the occasional 7 hours. Napping during day is not possible due to RLS but thankfully my legs are usually calm during day unless I get sleepy.

Just had blood work and my iron levels have dropped to 55. My family doctor is open to trying an iron infusion. I am seeing my neurologist this week and expect him to agree with the iron infusion idea. I have also been experiencing depression. Not sure if this is due to my combination of meds, the RLS or other reasons.

I had backed off clozapine but my sleep suffered greatly so I am back on it.

I have reached out to a counselor for a consultation. No questions just sharing update for my benefit and anyone else who may benefit from reading about my journey.

Polar Bear
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Re: new member - transitioning from ropinirole to gabapentin

Post by Polar Bear »

You are being proactive and this is good. I hope your appointment with your neurologist is positive regarding the iron infusion.
Please do keep an eye on your depression.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

bhud
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Joined: Tue Oct 20, 2020 9:43 pm

Re: new member - transitioning from ropinirole to gabapentin

Post by bhud »

When I met with Neurologist on Thursday, he suggested dropping .5mg of Ropinirole and see if the dosage of hydrocodone is sufficient. He wants to test that before going with an iron infusion.

I made it through Thursday, Friday and Saturday night with no sleep. I bumped up my dosage of hydrocodone from 7.5 mg to 10 mg Sunday night, and got over 9 hours of sleep.

I am hopeful that a dosage of 7.5 mg to 10 mg without any ropinirole will be sufficient. Going to try to drop back to 7.5 mg of hydrocodone tonight as a test. Fingers crossed! I would love to get completely off ropinirole and determine my baseline RLS symptoms.

Fly007
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Re: new member - transitioning from ropinirole to gabapentin

Post by Fly007 »

Thank you for sharing the updates bhud, I too am going through the same process. Was on 3.75mg of Pramapexole ER for years and have been weening off since early June this year. As seems to be the case for just about everyone getting off of the AD's we have been trying all kinds of different med approaches, Gabapetin, Neupro Patch, Horizant, etc... trying to find relief. Currently taking 1200mg of Horizant and .50 mg Tramadol on day 4 of no Pramapexole and sleep has been very sparse and spotty. Keep hoping that the light at the end of the tunnel will eventually be bright enough to blind me, but who knows how long that will take.

Polar Bear
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Re: new member - transitioning from ropinirole to gabapentin

Post by Polar Bear »

Fly007 - Well done so far. To be honest I had many's an attempt before I made it past day 4.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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